94 results on '"Allan Ben Smith"'
Search Results
2. Codesigning consumer engagement strategies with ethnic minority consumers in Australian cancer services: the CanEngage Project protocol
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Reema Harrison, Elizabeth Manias, Afaf Girgis, Merrilyn Walton, Carlene Wilson, Holly Seale, Allan Ben Smith, Melvin Chin, Desiree Leone, Ashfaq Chauhan, Bronwyn Newman, Kathryn Joseph, Jiadai Li, Monika Latanik, Ramesh Walpola, Éidín Ní Shé, and Thit Tieu
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Medicine - Abstract
Introduction Consumer engagement is central to high-quality cancer service delivery and is a recognised strategy to minimise healthcare-associated harm. Strategies developed to enhance consumer engagement specifically in relation to preventing healthcare harm include questioning health professionals, raising concerns about possible mistakes or risks in care and encouraging patients and caregivers to report suspected errors. Patients from ethnic minority backgrounds are particularly vulnerable to unsafe care, but current engagement strategies have not been developed specifically for (and with) this population. Using an adapted approach to experience-based codesign (EBCD) to support the target population, the aim of the project is to codesign consumer engagement interventions to increase consumer engagement and safety in New South Wales and Victorian cancer inpatient, outpatient and day procedure services.Methods and analysis A mixed-method project will be undertaken at six study sites. Our EBCD approach includes a preparatory phase in which we will provide training and support to the codesign participants, in addition to recruiting and training consumer cofacilitators for the codesign workshops. The project will follow the EBCD process of gathering and synthesising observational data from each cancer service, with interview data from consumers and staff. With the resulting in-depth understanding of the safety threats commonly experienced by ethnic minority consumers in each site, we will work through feedback events and codesign groups with consumers and staff to determine how they can be more involved with their care to minimise the potential for patient harm. Consumer engagement interventions will be coproduced in each of the six participating services that are tailored to the ethnic minority populations served.Ethics and dissemination Ethics approval has been obtained from the Western Sydney Local Health District Human Research Ethics Committee. The project will provide strategies for ethnic minority consumers to engage with cancer services to minimise healthcare-associated harm that may be applied to diverse healthcare settings.
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- 2021
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3. Setting an International Research Agenda for Fear of Cancer Recurrence: An Online Delphi Consensus Study
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Joanne Shaw, Helen Kamphuis, Louise Sharpe, Sophie Lebel, Allan Ben Smith, Nicholas Hulbert-Williams, Haryana Mary Dhillon, and Phyllis Butow
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cancer ,fear of cancer recurrence ,Delphi method ,research priorities ,international ,Psychology ,BF1-990 - Abstract
BackgroundFear of cancer recurrence (FCR) is common amongst cancer survivors. There is rapidly growing research interest in FCR but a need to prioritize research to address the most pressing clinical issues and reduce duplication and fragmentation of effort. This study aimed to establish international consensus among clinical and academic FCR experts regarding priorities for FCR research.MethodsMembers of the International Psycho-oncology Society (IPOS) Fear of Cancer Recurrence Special Interest Group (FORwards) were invited to participate in an online Delphi study. Research domains identified in Round 1 were presented and discussed at a focus group (Round 2) to consolidate the domains and items prior to presentation in further survey rounds (Round 3) aimed at gaining consensus on research priorities of international significance.ResultsThirty four research items were identified in Round 1 and 33 of the items were consolidated into six overarching themes through a focus group discussion with FCR experts. The 33 research items were presented in subsequent rounds of the delphi technique. Twenty one participants contributed to delphi round 1, 16 in round 2, and 25 and 29 participants for subsequent delphi rounds. Consensus was reached for 27 items in round 3.1. A further four research items were identified by panelists and included in round 3.2. After round 3.2, 35 individual research items were ratified by the panelists. Given the high levels of consensus and stability between rounds, no further rounds were conducted. Overall intervention research was considered the most important focus for FCR research. Panelists identified models of care that facilitate greater access to FCR treatment and evaluation of the effectiveness of FCR interventions in real world settings as the two research items of highest priority. Defining the mechanisms of action and active components across FCR/P interventions was the third highest priority identified.ConclusionThe findings of this study outline a research agenda for international FCR research. Intervention research to identify models of care that increase access to treatment are based on a flexible approach based on symptom severity and can be delivered within routine clinical care were identified as research areas to prioritize. Greater understanding of the active components and mechanisms of action of existing FCR interventions will facilitate increased tailoring of interventions to meet patient need.
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- 2021
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4. Is a Brief Online Booklet Sufficient to Reduce Fear of Cancer Recurrence or Progression in Women With Ovarian Cancer?
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Poorva Pradhan, Louise Sharpe, Phyllis N. Butow, Allan Ben Smith, and Hayley Russell
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cancer ,oncology ,neoplasm ,fear of cancer recurrence ,fear of cancer progression ,ovarian cancer ,Psychology ,BF1-990 - Abstract
Background: Fear of cancer recurrence or progression (FCR/P) is a common challenge experienced by people living with and beyond cancer and is frequently endorsed as the highest unmet psychosocial need amongst survivors. This has prompted many cancer organizations to develop self-help resources for survivors to better manage these fears through psychoeducation, but little is known about whether they help reduce FCR/P.Method: We recruited 62 women with ovarian cancer. Women reported on their medical history and demographic characteristics and completed the Fear of Progression Questionnaire-Short Form (FoP-Q-SF). They then read a booklet on FCR specifically created for Ovarian Cancer Australia by two of the authors (ABS and PB). One week after reading the booklet, 50/62 women (81%) completed the FoP-Q-SF and answered questions about their satisfaction with the booklet.Results: More than half of the women (35/62; 56.5%) scored in the clinical range for FCR/P at baseline. Of the completers, 93% said that they would recommend the booklet to other women. Satisfaction with the booklet was relatively high (75.3/100) and more than two-thirds of women rated it as moderately helpful or better. However, FCR/P did not change significantly over the week following reading the booklet [t(49) = 1.71, p = 0.09]. There was also no difference in change in FCR/P between women in the clinical vs. non-clinical range on the FoP-Q. Women high in FCR/P rated the booklet as less helpful in managing FCR/P (r = −0.316, p = 0.03), but overall satisfaction with the booklet was not associated with degree of FCR/P (r = −0.24, p = 0.10).Conclusions: These results suggest that a simple online FCR booklet is acceptable to women with ovarian cancer and they are satisfied with the booklet, but, it was insufficient to change in FCR/P levels. These results suggest that such resources are valued by women with ovarian cancer, but more potent interventions are necessary to reduce FCR in this population.
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- 2021
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5. A protocol for an updated and expanded systematic mixed studies review of fear of cancer recurrence in families and caregivers of adults diagnosed with cancer
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Stuart Leske, Allan Ben Smith, Sylvie D. Lambert, and Afaf Girgis
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Systematic review ,Fear of cancer recurrence ,Anxiety ,Concern ,Worry ,Recurrence ,Medicine - Abstract
Abstract Background Fear of cancer recurrence (FCR) is reportedly common, persistent, associated with significant morbidity and often higher in cancer caregivers than cancer patients. This review will summarise empirical research on FCR to understand its prevalence, severity, correlates, course and impact in families and caregivers of adults diagnosed with cancer, and identify tested interventions that reduce its effects. Methods This review will include peer-reviewed, empirical, qualitative and/or quantitative studies on fear, worry or concern of patients’ cancer returning or progressing among adult family members or caregivers of the cancer patient. It will exclude records reporting no original empirical research on FCR. We will search CINAHL, Embase, PubMed, PsycINFO, ProQuest Dissertations and Theses GLOBAL from 1997 onwards. Pairs of reviewers will conduct independent screening, data extraction and risk of bias assessment. Risk of bias will be assessed with the Cochrane Risk of Bias tool for randomised studies, the Risk of Bias Assessment tool for Nonrandomized Studies and the questions for qualitative studies in the mixed methods appraisal tool. We will conduct a narrative synthesis of quantitative studies and a thematic synthesis of qualitative studies. Discussion This review will provide further clarity on the prevalence and severity of FCR in families and caregivers and differences by caregiver and care recipient demographic and medical characteristics. Any intervention studies located may indicate therapies or treatments that could reduce FCR in families and caregivers. Findings are expected to provide guidance for individuals and organisations working to manage FCR in families and caregivers of those with cancer. Systematic review registration This protocol will be registered with PROSPERO after peer-review.
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- 2018
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6. Missingness mechanisms and generalizability of patient reported outcome measures in colorectal cancer survivors – assessing the reasonableness of the 'missing completely at random' assumption
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Johanne Dam Lyhne, Allan ‘Ben’ Smith, Lars Henrik Jensen, Torben Frøstrup Hansen, Lisbeth Frostholm, and Signe Timm
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Patient reported Outcome ,Colorectal cancer ,Registries ,Survivors ,Missing data ,Non-responders ,Medicine (General) ,R5-920 - Abstract
Abstract Background Patient-Reported Outcome Measures (PROM) provide important information, however, missing PROM data threaten the interpretability and generalizability of findings by introducing potential bias. This study aims to provide insight into missingness mechanisms and inform future researchers on generalizability and possible methodological solutions to overcome missing PROM data problems during data collection and statistical analyses. Methods We identified 10,236 colorectal cancer survivors (CRCs) above 18y, diagnosed between 2014 and 2018 through the Danish Clinical Registries. We invited a random 20% (2,097) to participate in a national survey in May 2023. We distributed reminder e-mails at day 10 and day 20, and compared Initial Responders (response day 0–9), Subsequent Responders (response day 10–28) and Non-responders (no response after 28 days) in demographic and cancer-related characteristics and PROM-scores using linear regression. Results Of the 2,097 CRCs, 1,188 responded (57%). Of these, 142 (7%) were excluded leaving 1,955 eligible CRCs. 628 (32%) were categorized as initial responders, 418 (21%) as subsequent responders, and 909 (47%) as non-responders. Differences in demographic and cancer-related characteristics between the three groups were minor and PROM-scores only marginally differed between initial and subsequent responders. Conclusion In this study of long-term colorectal cancer survivors, we showed that initial responders, subsequent responders, and non-responders exhibit comparable demographic and cancer-related characteristics. Among respondents, Patient-Reported Outcome Measures were also similar, indicating generalizability. Assuming Patient-Reported Outcome Measures of subsequent responders represent answers by the non-responders (would they be available), it may be reasonable to judge the missingness mechanism as Missing Completely At Random.
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- 2024
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7. The Evaluation of the Suitability, Quality, and Readability of Publicly Available Online Resources for the Self-Management of Fear of Cancer Recurrence
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Verena Shuwen Wu, Tiyasha Sabud, Allan ‘Ben’ Smith, Sylvie D. Lambert, Joseph Descallar, Sophie Lebel, and Adeola Bamgboje-Ayodele
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fear of cancer recurrence ,self-management ,cancer ,oncology ,health resources ,internet ,Neoplasms. Tumors. Oncology. Including cancer and carcinogens ,RC254-282 - Abstract
Cancer survivors often rely on the internet for health information, which has varying levels of readability, suitability, and quality. There is a need for high-quality online self-management resources for cancer survivors with fear of cancer recurrence (FCR). This study evaluated the readability, suitability, and quality of publicly available online FCR self-management resources. A Google search using FCR-related keywords identified freely available FCR self-management resources for cancer survivors in English. Resource readability (reading grade level), suitability, and quality were evaluated using relevant assessment tools. Descriptive statistics and cluster analysis identified resources with higher suitability and quality scores. Mean resource (n = 23) readability score was grade 11 (SD = 1.6, Range = 9–14). The mean suitability score was 56.0% (SD = 11.4%, Range = 31.0–76.3%), indicating average suitability and the mean quality score was 53% (SD = 11.7%, Range = 27–80%), indicating fair quality. A cluster of 15 (65%) resources with higher suitability and quality scores was identified. There were no significant associations between suitability or quality scores and the type of organisation that published the resources. Online FCR self-management resources varied in readability, suitability and quality. Resources with higher quality and suitability scores relative to other resources are identified for use by healthcare professionals and cancer survivors. Resources that are more culturally appropriate, with lower reading grade levels and detailed self-management strategies are needed.
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- 2023
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8. Encouraging Patients to Ask Questions: Development and Pilot Testing of a Question Prompt List for Patients Undergoing a Biopsy for Suspected Prostate Cancer
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Orlando Rincones, Allan ‘Ben’ Smith, Peter Chong, Pascal Mancuso, Verena Shuwen Wu, Mark Sidhom, Karen Wong, Diana Ngo, Paul Gassner, and Afaf Girgis
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prostate biopsy ,prostate cancer ,question prompt list ,treatment decision-making ,Neoplasms. Tumors. Oncology. Including cancer and carcinogens ,RC254-282 - Abstract
This study assessed the acceptability and feasibility of a question prompt list (QPL) to facilitate informed treatment decision-making in men with suspected localised prostate cancer, which involves values-based choices between options with similar efficacy but different side effects. The QPL was developed through iterative consultation with consumers, clinicians and researchers. Acceptability was assessed using study-specific questions regarding QPL satisfaction and usefulness and qualitative interviews. Feasibility was determined via the proportion of men given the QPL according to medical records and the completion of standardised measures of decisional outcomes. Quantitative data were analysed using descriptive and univariate statistics. Qualitative data were thematically analysed. Fifty-two men consented; 34 provided data for analysis. The QPL recipients reported moderate–high content satisfaction (70.6%) and perceived usefulness in guiding appointments when receiving biopsy results (64.7%). Two main qualitative themes also indicated the QPL acceptability: (1) the freedom to ask—acceptable timing, flexible usage and usefulness of the QPL, and (2) satisfaction with the QPL content. However, only 18.4% of eligible men received the QPL, indicating limited feasibility. The QPL is safe and acceptable, but further research is needed regarding how to facilitate the uptake of the question prompt list in clinical practice.
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- 2023
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9. Validation of the French version of the Functional, Communicative and Critical Health Literacy scale (FCCHL)
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Youssoufa M. Ousseine, Alexandra Rouquette, Anne-Déborah Bouhnik, Laurent Rigal, Virginie Ringa, Allan ‘Ben’ Smith, and Julien Mancini
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Health literacy ,Measurement ,Validation studies ,Psychometrics ,Cancer ,France ,Public aspects of medicine ,RA1-1270 - Abstract
Abstract Background Health literacy is a key asset, defined as the capacity to acquire, understand and use information in ways which promote and maintain good health. Objectives To assess the reliability and validity of the French translation of the Functional, Communicative and Critical Health Literacy (FCCHL) scale. Methods/participants A cross-sectional survey using an online questionnaire was proposed to all members of Seintinelles association. Exploratory and confirmatory factorial analyses were conducted. Results Data from 2342 respondents (45.8% had cancer history) were analysed. The FCCHL scale was well-accepted (missing value by item ≤0.7%). Factor analysis revealed an acceptable fit of three-factor model (comparative fit index = 0.922, root mean square error of approximation = 0.065 and standardized root mean square residual = 0.052). The FCCHL showed satisfactory reliability (α = 0.77) and scalar invariance was reached for education and deprivation, but not for age. Known group validity was verified as mean scale scores differed according to education, deprivation and age, as expected. Conclusion The French version of the FCCHL provides a brief reliable and valid measure to explore the dimensions of health literacy. It could be used by health professionals to screen for health literacy level in order to develop this skill and to tailor health communication.
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- 2018
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10. Exploring cancer patients’, caregivers’, and clinicians’ utilisation and experiences of telehealth services during COVID-19: A qualitative study
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Sarah J, Smith, Allan Ben, Smith, William, Kennett, and Shalini K, Vinod
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Adult ,Caregivers ,Neoplasms ,Australia ,COVID-19 ,Humans ,General Medicine ,Pandemics ,Telemedicine - Abstract
The COVID-19 pandemic has significantly impacted oncology. With pandemic restrictions limiting close contact between individuals, telehealth (the use of teleconferencing/videoconferencing to conduct real-time medical consultations) has been increasingly utilised. This qualitative study aimed to explore adult cancer patient, caregiver, and clinician (doctor, nurse, allied health) telehealth experiences during COVID-19 in urban and rural Australian settings and identify potential enablers and barriers to sustained telehealth implementation.English-speaking participants completed semi-structured interviews regarding their telehealth experiences since March 2020. Interviews ceased when data saturation occurred. Iterative thematic analysis was conducted using NVivo 12 Pro.Thirty-four interviews (clinician=14, patient=13, caregiver=7) were conducted from April to August 2021. Analysis generated seven themes relating to telehealth use: 1) Acceptability as a form of consultation, 2) Impacts on healthcare provision, 3) Communicationrelationships, 4) Efficient form of consultation, 5) Comfort of conducting telehealth in different environments, 6) Technological barriers and 7) Future preferences.The rapid uptake of telehealth during the pandemic has mostly been well-received, and telehealth can be appropriately used in oncology.Barriers including providing appropriate facilities, technology, and telehealth training; and selecting appropriate patients must be addressed to enable sustained telehealth use in future cancer care.
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- 2022
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11. Evaluation of the validity and screening performance of a revised single‐item fear of cancer recurrence screening measure (FCR‐1r)
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Allan ‘Ben’ Smith, Mingbo Gao, Mei Tran, Maria Ftanou, Sharuja Jegathees, Verena Wu, Michael Jefford, Fiona Lynch, Haryana M. Dhillon, Joanne Shaw, Lachlan McDowell, Alan White, Clare Halloran, David Wiesenfeld, and Adeola Bamgboje‐Ayodele
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Psychiatry and Mental health ,Oncology ,Experimental and Cognitive Psychology - Published
- 2023
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12. A systematic mixed studies review of fear of cancer recurrence in families and caregivers of adults diagnosed with cancer
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Allan Ben Smith, Stuart Leske, Verena Shuwen Wu, Jani Lamarche, Sophie Lebel, Sylvie D. Lambert, and Afaf Girgis
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Gerontology ,medicine.medical_specialty ,Oncology (nursing) ,business.industry ,Public health ,Psychological intervention ,Cancer ,chemical and pharmacologic phenomena ,medicine.disease ,Cancer recurrence ,humanities ,Oncology ,Quality of life ,Survivorship curve ,medicine ,Thematic synthesis ,business ,Qualitative research - Abstract
Fear of cancer recurrence (FCR) may be equally prevalent, persistent and burdensome in cancer caregivers as in survivors. This systematic review evaluated FCR prevalence, severity, correlates, course, impact and interventions in cancer caregivers. Electronic databases were searched from 1997 to May 2021. Two reviewers identified eligible peer-reviewed qualitative or quantitative studies on FCR in adult caregivers or family members of adult cancer survivors. The risk of bias was assessed using the Cochrane Risk of Bias tools for randomised and non-randomised studies and the Mixed-Methods Appraisal Tool. A narrative synthesis and thematic synthesis occurred on quantitative and qualitative studies, respectively. Of 2418 papers identified, 70 reports (59 peer-reviewed articles, 11 postgraduate theses) from 63 studies were included. Approximately 50% of caregivers experienced FCR. Younger caregivers and those caring for survivors with worse FCR or overall health reported higher FCR. Most studies found caregivers’ FCR levels were equal to or greater than survivors’. Caregivers’ FCR was persistently elevated but peaked approaching survivor follow-up appointments. Caregivers’ FCR was associated with poorer quality of life in caregivers and survivors. Three studies found couple-based FCR interventions were acceptable, but had limited efficacy. FCR in caregivers is prevalent, persistent and burdensome. Younger caregivers of survivors with worse overall health or FCR are at the greatest risk. Further research on identifying and treating caregivers’ FCR is required. Caregiver and survivor FCR are similarly impactful and appear interrelated. Addressing FCR may improve outcomes for both cancer caregivers and survivors.
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- 2021
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13. How do health services engage culturally and linguistically diverse consumers? An analysis of consumer engagement frameworks in Australia
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Jiadai Li, Holly Seale, Ramesh L Walpola, Allan Ben Smith, Carlene Wilson, Elizabeth Manias, Merrilyn Walton, Ashfaq Chauhan, and Reema Harrison
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Medicine (General) ,ethnic minority ,engagement frameworks ,Health Services Accessibility ,R5-920 ,Health care ,Humans ,Narrative ,Sociology ,Patient participation ,Health policy ,Reimbursement ,Language ,consumer engagement ,Government ,business.industry ,Australia ,Public Health, Environmental and Occupational Health ,health policy ,Cultural Diversity ,Original Articles ,Health Services ,Public relations ,Project team ,document analysis ,Original Article ,patient participation ,Public aspects of medicine ,RA1-1270 ,business ,Health department - Abstract
Background Engagement frameworks provide the conceptual structure for consumer engagement in healthcare decision making, but the level to which these frameworks support culturally and linguistically diverse (CALD) consumer engagement is not known. Objective This study aimed to investigate how consumer engagement is conceptualised and operationalized and to determine the implications of current consumer engagement frameworks for engagement with CALD consumers. Method Altheide's document analysis approach was used to guide a systematic search, selection and analytic process. Australian Government health department websites were searched for eligible publicly available engagement frameworks. A narrative synthesis was conducted. Results Eleven engagement frameworks published between 2007 and 2019 were identified and analysed. Only four frameworks discussed engagement with CALD consumers distinctly. Organisational prerequisites to enhance engagement opportunities and approaches to enable activities of engagement were highlighted to improve CALD consumers' active participation in decision making; however, these largely focused on language, with limited exploration of culturally sensitive services. Conclusion There is limited discussion of what culturally sensitive services look like and what resources are needed to enhance CALD consumer engagement in high‐level decision making. Health services and policy makers can enhance opportunities for engagement with CALD consumers by being flexible in their approach, implementing policies for reimbursement for participation and evaluating and adapting the activities of engagement in collaboration with CALD consumers. Patient/Public Contribution This study is part of a wider ‘CanEngage’ project, which includes a consumer investigator, and is supported by a consumer advisory group. The study was conceived with inputs from the consumer advisory group, which continued to meet regularly with the project team to discuss the methodology and emerging findings.
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- 2021
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14. Information overload in the context of COVID-19 pandemic: A repeated cross-sectional study
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Martin Breyton, Émilien Schultz, Allan 'Ben' Smith, Alexandra Rouquette, Julien Mancini, Institut des sciences de la santé publique [Marseille] (ISSPAM), Sciences Economiques et Sociales de la Santé & Traitement de l'Information Médicale (SESSTIM - U1252 INSERM - Aix Marseille Univ - UMR 259 IRD), Institut de Recherche pour le Développement (IRD)-Aix Marseille Université (AMU)-Institut National de la Santé et de la Recherche Médicale (INSERM), Assistance Publique - Hôpitaux de Marseille (APHM), Centre population et développement (CEPED - UMR_D 196), Institut de Recherche pour le Développement (IRD)-Université Paris Cité (UPCité), The University of Sydney, Centre de recherche en épidémiologie et santé des populations (CESP), Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Paul Brousse-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris-Saclay, Hôpital de la Timone [CHU - APHM] (TIMONE), This work benefited from the support of La Ligue Contre le Cancer (France) through the accreditation (LIGUE 2019) of the CANBIOS team. The sponsors had no role in study design, in the collection, analysis and interpretation of data, in the writing of the report, and and in the decision to submit the paper for publication.
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Cancer information overload ,Coronavirus information overload ,Psychometrics ,Validation studies ,[SDV]Life Sciences [q-bio] ,Health behaviour ,Health literacy ,General Medicine - Abstract
International audience; Objectives: To assess the psychometric properties of the Coronavirus Information Overload scale (CovIO) and explore relationships between CovIO, its predictors and several health behaviours related to the COVID-19 pandemic, using Cancer Information Overload (CIO) scale results as a reference for comparison. Methods: 2003 participants representative of the French adult population answered a self-administered questionnaire over two waves of polling (N1(June 2020)= 1003, N2(January 2021)= 1000). Respondents were randomized to fill CovIO or CIO scale. Psychometric properties of scales were evaluated with Confirmatory Factor Analysis (CFA). Predictors were assessed using multivariate linear regression. Results: CovIO scale showed satisfactory psychometric properties (α=0.86, ω=0.86, RMSEA=0.050) without any measurement invariance issue. CovIO increased between waves of sampling and was significantly linked to education, health literacy and trust in institutions among other variables. A negative relationship between information overload and preventive behaviours was also observed. Conclusion: The CovIO scale is a valid tool for assessing COVID-19 information overload. The dynamical formation of information overload and links with theorised predictors, especially, health literacy are confirmed. Practice implications: Longitudinal designs could help better understand the potential detrimental effect of information overload and improving public health campaigns. Interventions to reduce the degree of overload are needed.
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- 2023
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15. Feasibility and preliminary efficacy of iConquerFear: a self-guided digital intervention for fear of cancer recurrence
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Allan ‘Ben’ Smith, Adeola Bamgboje‐Ayodele, Sharuja Jegathees, Phyllis Butow, Britt Klein, Marj Salter, Jane Turner, Joanna Fardell, Belinda Thewes, Louise Sharpe, Lisa Beatty, Alison Pearce, Jane Beith, Daniel Costa, Orlando Rincones, Verena S. Wu, Frances L. Garden, Belinda E. Kiely, Karen Lim, Lisa Morstyn, Brigid Hanley, Rosemerry Hodgkin, Annette Beattie, and Afaf Girgis
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Oncology ,Oncology (nursing) - Abstract
Purpose Approximately 50% of cancer survivors experience moderate-severe fear of cancer recurrence (FCR). Self-guided digital interventions have potential to address the high level of FCR-related unmet needs at scale, but existing digital interventions have demonstrated variable engagement and efficacy. This study aimed to evaluate the feasibility and preliminary efficacy of iConquerFear, a five-module self-guided digital FCR intervention. Methods Eligible curatively treated breast cancer survivors were recruited. Participants reporting clinically significant FCR (≥ 13 on the Fear of Cancer Recurrence Inventory-Short Form; FCRI-SF) were given access to iConquerFear. Feasibility was indicated by > 50% of eligible participants enrolling in iConquerFear and recording moderate (≥ 120 min) or greater usage. Preliminary efficacy was evaluated via changes in self-reported FCR severity, anxiety, depression, intrusions and metacognitions from baseline to immediately and 3 months post-intervention. Results Fifty-four (83%) of 65 eligible participants enrolled in iConquerFear; six subsequently withdrew. Thirty-nine (83%) participants recorded moderate (n = 24; 120–599 min) or high (n = 15; ≥ 600 min) usage. Engagement levels increased with participant age (p = 0.043), but were lower in participants with higher baseline FCR (p = 0.028). Qualitative feedback indicated engagement was sometimes limited by difficulties with navigation and relating to featured survivors. Participants reported significantly improved FCR (mean reduction (95%CI): baseline to post-intervention − 3.44 (− 5.18, − 1.71), baseline to 3-month follow-up − 4.52 (− 6.25, − 2.78), p = Conclusion iConquerFear is a feasible and potentially efficacious intervention for reducing FCR in breast cancer survivors. Easier navigation and more relatable examples may enhance engagement. Implications for Cancer Survivors iConquerFear may help address moderate but burdensome FCR levels in cancer survivors.
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- 2022
16. What is the prevalence of fear of cancer recurrence in cancer survivors and patients?:A systematic review and individual participant data meta-analysis
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Yvonne L. Luigjes‐Huizer, Nina M. Tauber, Gerry Humphris, Nadine A. Kasparian, Wendy W. T. Lam, Sophie Lebel, Sébastien Simard, Allan Ben Smith, Robert Zachariae, Yati Afiyanti, Katy J. L. Bell, José A. E. Custers, Niek J. de Wit, Peter L. Fisher, Jacqueline Galica, Sheila N. Garland, Charles W. Helsper, Mette M. Jeppesen, Jianlin Liu, Roxana Mititelu, Evelyn M. Monninkhof, Lahiru Russell, Josée Savard, Anne E. M. Speckens, Sanne J. van Helmondt, Sina Vatandoust, Nicholas Zdenkowski, Marije L. van der Lee, and Medical and Clinical Psychology
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Male ,Adult ,FEASIBILITY ,prevalence ,Stress-related disorders Donders Center for Medical Neuroscience [Radboudumc 13] ,INVENTORY ,Experimental and Cognitive Psychology ,chemical and pharmacologic phenomena ,MELANOMA ,PROGRESSION ,VALIDATION ,1117 Public Health and Health Services ,Cancer Survivors ,QUALITY-OF-LIFE ,BREAST-CANCER ,cancer ,Humans ,VERSION ,Neoplasm Recurrence, Local/epidemiology ,correlates ,Fear ,COGNITIVE-BEHAVIOR THERAPY ,Women's cancers Radboud Institute for Health Sciences [Radboudumc 17] ,Psychiatry and Mental health ,fear of recurrence ,Phobic Disorders ,oncology ,CLINICAL-LEVELS ,Female ,Neoplasm Recurrence, Local - Abstract
Contains fulltext : 288352.pdf (Publisher’s version ) (Open Access) OBJECTIVE: Care for fear of cancer recurrence (FCR) is considered the most common unmet need among cancer survivors. Yet the prevalence of FCR and predisposing factors remain inconclusive. To support targeted care, we provide a comprehensive overview of the prevalence and severity of FCR among cancer survivors and patients, as measured using the short form of the validated Fear of Cancer Recurrence Inventory (FCRI-SF). We also report on associations between FCR and clinical and demographic characteristics. METHODS: This is a systematic review and individual participant data (IPD) meta-analysis on the prevalence of FCR. In the review, we included all studies that used the FCRI-SF with adult (≥18 years) cancer survivors and patients. Date of search: 7 February 2020. Risk of bias was assessed using the Joanna Briggs Institute critical appraisal tool. RESULTS: IPD were requested from 87 unique studies and provided for 46 studies comprising 11,226 participants from 13 countries. 9311 respondents were included for the main analyses. On the FCRI-SF (range 0-36), 58.8% of respondents scored ≥13, 45.1% scored ≥16 and 19.2% scored ≥22. FCR decreased with age and women reported more FCR than men. FCR was found across cancer types and continents and for all time periods since cancer diagnosis. CONCLUSIONS: FCR affects a considerable number of cancer survivors and patients. It is therefore important that healthcare providers discuss this issue with their patients and provide treatment when needed. Further research is needed to investigate how best to prevent and treat FCR and to identify other factors associated with FCR. The protocol was prospectively registered (PROSPERO CRD42020142185).
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- 2022
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17. Fear of Cancer Recurrence in Patients With Localized Renal Cell Carcinoma
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Pavlos Msaouel, Michael Staehler, Errol J. Philip, Sumanta K. Pal, Dena Battle, Cristiane Decat Bergerot, Eric Jonasch, Adeola Esther Bamgboje, Ithaar Derweesh, Brian Shuch, Paulo Gustavo Bergerot, Allan Ben Smith, and Adam P. Stern
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Male ,0301 basic medicine ,Oncology ,medicine.medical_specialty ,Cancer recurrence ,03 medical and health sciences ,0302 clinical medicine ,Quality of life ,Renal cell carcinoma ,Internal medicine ,medicine ,Humans ,In patient ,Child ,Carcinoma, Renal Cell ,Oncology (nursing) ,business.industry ,Health Policy ,Cancer ,Fear ,medicine.disease ,Kidney Neoplasms ,Distress ,030104 developmental biology ,Child, Preschool ,030220 oncology & carcinogenesis ,Quality of Life ,Female ,Neoplasm Recurrence, Local ,business - Abstract
PURPOSE: Patients with cancer commonly report distress and fear of cancer recurrence (FCR) impacting quality of life and clinical outcomes. This study aims to test the association between emotional well-being and clinical characteristics of survivors with localized renal cell carcinoma (RCC). MATERIALS AND METHODS: Survivors with localized RCC were invited to participate in this study through social media by the Kidney Cancer Research Alliance. Participants self-reported clinical characteristics, distress (Distress Thermometer), and FCR (Fear of Cancer Recurrence-7). Ordinal regression was used to test the association between emotional well-being and patient characteristics. RESULTS: A total of 412 survivors were included in this analysis. Participants were mostly female (79.4%) and well educated (58.3%), with a median age of 54 years (range, 30-80 years) and median time since diagnosis of 17.5 months. More than one half were diagnosed with stage I disease (56.1%). Most patients (62.3%) had a clear understanding of their diagnosis. A high prevalence of moderate to severe distress (67.0%) and FCR (54.9%) was reported across all survivors of RCC. Higher FCR was associated with female gender, younger age, and lack of understanding of their diagnosis ( P = .001), whereas more recent diagnosis was associated with higher distress levels ( P = .01). CONCLUSION: Our findings suggest that FCR is a common problem that is persistent after therapy and that certain individuals, including female and younger patients, may be at particular risk of experiencing clinically relevant FCR.
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- 2020
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18. Integrating fear of cancer recurrence screening into routine care: opportunities and challenges
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Allan Ben Smith
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medicine.medical_specialty ,business.industry ,Psycho-oncology ,Cancer ,Experimental and Cognitive Psychology ,medicine.disease ,Cancer recurrence ,Psychiatry and Mental health ,Oncology ,Family medicine ,Survivorship curve ,medicine ,business ,Routine care - Published
- 2020
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19. Stepping into the real world: a mixed-methods evaluation of the implementation of electronic patient reported outcomes in routine lung cancer care
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Afaf, Girgis, Adeola, Bamgboje-Ayodele, Orlando, Rincones, Shalini K, Vinod, Sandra, Avery, Joseph, Descallar, Allan 'Ben', Smith, Belinda, Arnold, Anthony, Arnold, Victoria, Bray, Ivana, Durcinoska, Nicole M, Rankin, and Jennifer, Wiltshire
- Abstract
To realize the broader benefits of electronic patient-reported outcome measures (ePROMs) in routine care, we used the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework to inform the translation of a clinically effective ePROM system (hereafter referred to as the PRM system) into practice. The study aimed to evaluate the processes and success of implementing the PRM system in the routine care of patients diagnosed with lung cancer.A controlled before-and-after mixed-methods study was undertaken. Data sources included a self-report questionnaire and interviews with healthcare providers, electronic health record data for PRMs patients and historical controls, and field notes. Descriptive statistics, logistic regression modelling, negative binomial models, generalized estimating equations and repeated measures ANOVA were used to analyze quantitative data. Qualitative data was thematically analyzed.A total of 48/79 eligible people diagnosed with lung cancer completed 90 assessments during the 5-month implementation period (RE-AIM reach). Every assessment breached the pre-defined threshold and care coordinators reviewed and actioned 95.6% of breaches, resulting in 146 referrals to allied health services, most frequently for social work (25.3%), dietetics (18.5%), physiotherapy (18.5%) and occupational therapy (17.1%). PRMs patients had significantly fewer visits to the cancer assessment unit for problematic symptoms (M = 0.23 vs. M = 0.43; p = 0.035), and were significantly more likely to be offered referrals (71% vs. 29%, p 0.0001) than historical controls (RE-AIM effect). The levels of 'organizational readiness for implementing change' (ORIC) did not show much differences between baseline and follow-up, though this was already high at baseline; but significantly more staff reported improved confidence when asking patients to complete assessments (64.7% at baseline vs. 88.2% at follow-up, p = 0.0046), and when describing the assessment tool to patients (64.7% at baseline vs. 76.47% at follow-up, p = 0.0018) (RE-AIM adoption). A total of 78 staff received PRM system training, and 95.6% of the PRM system alerts were actioned (RE-AIM implementation); and all lung cancer care coordinators were engaged with the PRM system beyond the end of the study period (RE-AIM maintenance).This study demonstrates the potential of the PRM system in enhancing the routine care of lung cancer patients, through leveraging the capabilities of automated web-based care options. Research has shown the clear benefits of using electronically collected patient-reported outcome measures (ePROMs) for cancer patients and health services. However, we need to better understand how to implement ePROMs as part of routine care. This study evaluated the processes and outcomes of implementing an ePROMs system in the routine care of patients diagnosed with lung cancer. Key findings included: (a) a majority of eligible patients completed the scheduled assessments; (b) patient concerns were identified in every assessment, and care coordinators reviewed and actioned almost all of these, including making significantly more referrals to allied health services; (c) patients completing assessments regularly were less likely to present to the cancer assessment unit with problematic symptoms, suggesting that ePROMs identified patient concerns early and this led to a timely response to concerns; (d) staff training and engagement was high, and staff reporting increased confidence when asking patients to complete assessments and when describing the assessment tool to patients at the end of the implementation period. This study shows that implementing ePROMs in routine care is feasible and can lead to improvements in patient care.
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- 2022
20. Efficacy and cost-effectiveness of an online mindfulness program (MindOnLine) to reduce fear of recurrence among people with cancer: study protocol for a randomised controlled trial
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Patricia M Livingston, Lahiru Russell, Liliana Orellana, Natalie Winter, Michael Jefford, Afaf Girgis, David Austin, Eric O, Cathrine Mihalopoulos, Anna Ugalde, Richard Chambers, Jo Phipps-Nelson, Dishan Herath, Mari Botti, Bodil Rasmussen, Kathryn Whitfield, Maria Ftanou, Allan Ben Smith, Kirsten Pilatti, Sally Sara, Addie Wootten, Kate Gillan, Madhu Singh, David Campbell, Brindha Pillay, and Victoria White
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Male ,Victoria ,Cost-Benefit Analysis ,Fear ,General Medicine ,world wide web technology ,Oncology ,Neoplasms ,Quality of Life ,health economics ,Humans ,Medicine ,Single-Blind Method ,Mindfulness ,Randomized Controlled Trials as Topic - Abstract
IntroductionFear of cancer recurrence (FCR) is a common condition among cancer survivors that can lead to significant levels of distress, anxiety and depression. Online mindfulness programmes may provide the mechanism to support cancer survivors manage FCR and distress, and improve people’s well-being over the short, medium and long term. The primary aim of this study is to determine the potential efficacy of MindOnLine, a 9 session mindfulness-based programme for survivors of breast, prostate and colorectal cancer. A formal economic programme will also be conducted.Methods and analysisA single-blind randomised controlled trial to determine the efficacy and cost-efficacy of a MindOnLine programme for cancer survivors. A total of 400 people living with cancer will be recruited via online advertisements on social media platforms, peak consumer advocacy groups or through outpatient services at healthcare providers across Victoria, Australia. People will be randomly allocated to either the MindOnLine programme (n=200) or waitlist control (n=200). Participant assessments will occur at baseline, at 9 weeks and 9-month follow-up. The primary outcome is change in Fear of Recurrence Index Score total score between baseline and 9 weeks; secondary outcomes are changes in depression and anxiety, quality of life and mindfulness. The economic analysis comprises a cost-consequences analysis where all outcomes will be compared with costs.Ethics and disseminationEthics approval was obtained from the Peter MacCallum Cancer Centre (20-53) and Deakin University (2020-284). All participants will be required to provide written informed consent. Findings will be disseminated in peer reviewed journals and among key stakeholder organisations including hospitals, cancer and community organisations and Government. If successful the project will be rolled out nationally with a formal implementation plan.Trial registration numberAustralian New Zealand Clinical Trials Registry (12620000645954); Pre-results. Registered 6 June 2020, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=379520&isReview=true.
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- 2022
21. Fear of cancer recurrence among Brazilian patients with cancer: Translation and cultural adaptation of FCR4/7 and FCRI-SF measures
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Cristiane Decat, Bergerot, Leticia Norata, Ferreira, Lorena Nascimento Manrique, Molina, Larissa Bessert, Pagung, Bianca da Silva, Pedersen, Thais Gonçalves, de Andrade, Raquel Helena Iinuma, Machado, Alici Natalia de Sousa, Freitas, Lucia Helena Cavalcanti Toscano, Barreto, Luciana Lima, de Araujo, Isabella Barros Rabelo Gontijo, Tumeh, Natalia Barros Salgado, Vieira, David, Lee, Errol J, Philip, João Nunes Matos, Neto, Marco Murilo, Buso, Sebastien, Simard, Gozde, Ozakinci, Gerald, Humphris, Paulo Gustavo, Bergerot, and Allan Ben, Smith
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Psychiatry and Mental health ,Clinical Psychology - Abstract
Fear of cancer recurrence or progression (FCR) is considered one of the most common unmet needs among patients with cancer. This study sought to translate and evaluate the psychometric properties of the Fear of Cancer Recurrence scale (FCR4/7) and Fear of Cancer Recurrence Inventory-Short Form (FCRI-SF).This study involved three phases: (1) translation and cultural adaptation of the FCR4/7 and FCRI-SF measures, (2) validity and reliability testing of the Portuguese version of these measures, and (3) examining patient's perceptions of these measures. Eligible patients were diagnosed with localized breast cancer, and patients with metastatic cancer. Descriptive analyses were collated, and psychometric analysis were conducted (confirmatory factor analysis).A total of 200 patients were recruited (100 patients with localized and 100 patients with metastatic cancer). A significant proportion of patients reported moderate to severe FCR (FCR7: 32.0% and FCRI-SF: 43.0%). Female gender, younger age and metastatic cancer were associated with higher levels of FCR. Psychometric analyses suggested that the Portuguese versions of the FCR4/7 and FCRI-SF were valid, unidimensional in nature, with acceptable reliability coefficients across all scales. In a sub-sample qualitative analysis (n = 75), most patients were satisfied with the relevance of both measures.Our findings suggest the Portuguese versions of the FCR4/7 and FCRI-SF are valid tools to assess FCR among patients with localized and metastatic cancer. Future research can now extend our understanding of FCR and assess this construct among Portuguese speaking patients, to guide the development of effective and targeted interventions for patients globally.
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- 2023
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22. Fear of cancer recurrence in young women 5 years after diagnosis with a good-prognosis cancer: the VICAN-5 national survey
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Clément Magnani, Allan Ben Smith, Dominique Rey, Aline Sarradon-Eck, Marie Préau, Marc-Karim Bendiane, Anne-Déborah Bouhnik, and Julien Mancini
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Oncology ,Oncology (nursing) - Abstract
Fear of cancer recurrence (FCR) is frequent in survivors, but less is known about FCR in long-term survivors with very low risk of relapse. Our aim was to estimate the prevalence and clinical and socio-behavioural factors associated with FCR in young women 5 years after diagnosis of a good-prognosis cancer.Using data from the VICAN-5 survey, conducted in 2015-2016 amongst a national representative French sample of cancer survivors, we included women with non-metastatic melanoma, breast, or thyroid cancer, aged 55 years or under at diagnosis, who experienced no disease progression in the 5 years post-diagnosis. Multinomial logistic regression was used to identify factors associated with FCR, characterised using a three-level indicator: no, mild, and moderate/severe FCR.Amongst the 1153 women included, mean age was 44 years at diagnosis, and 81.8% had breast cancer, 12.5% thyroid cancer, and 5.8% melanoma. Five years after diagnosis, 35.4% reported no FCR, 46.0% mild FCR, and 18.6% moderate/severe FCR. Women with thyroid cancer were less likely to suffer from mild or moderate/severe FCR, while cancer-related treatment sequelae, fatigue, and anxiety were more likely. Limited health literacy was associated with mild FCR. Women who reported only occasionally consulting a general practitioner (GP) for the management of their cancer had a higher probability of FCR.Moderate/severe FCR affected nearly 20% of young female long-term survivors diagnosed with a good-prognosis cancer, particularly those reporting cancer-related sequelae, suffering from fatigue or anxiety, with breast cancer or melanoma (versus thyroid cancer), and consulting a GP only occasionally for cancer management.Given the recognised impact of FCR on quality of life, it is essential to detect it as early as possible, and to implement targeted interventions in routine care.
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- 2021
23. Optimising implementation of telehealth in oncology: A systematic review examining barriers and enablers using the RE-AIM planning and evaluation framework
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Stella, Bu, Allan 'Ben', Smith, Anna, Janssen, Candice, Donnelly, Ann, Dadich, Lisa J, Mackenzie, Andrea L, Smith, Alison L, Young, Verena S, Wu, Sarah J, Smith, and Ursula M, Sansom-Daly
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Oncology ,Humans ,COVID-19 ,Hematology ,Medical Oncology ,Pandemics ,Telemedicine - Abstract
Telehealth facilitates access to cancer care for patients unable to attend in-person consultations, as in COVID-19. This systematic review used the reach, effectiveness, adoption, implementation, and maintenance (RE-AIM) framework to evaluate telehealth implementation and examine enablers and barriers to optimal implementation in oncology. MEDLINE, PubMed, CINAHL, and the Cochrane Database of Systematic Reviews were searched between January 2011-June 2022. Eighty-two articles representing 73 studies were included. One study explicitly used the RE-AIM framework to guide study design, conduct, or reporting. Reach (44%) and implementation (38%) were most commonly reported, maintenance (5%) least commonly. Key telehealth implementation enablers included professional-led delivery, patient-centred approaches, and positive patient perceptions. Key barriers included patient discomfort with technology, limited supporting clinic infrastructure, and poor access to reliable internet connection and videoconferencing. While a patient-centred and professional-supported approach enables telehealth implementation, technology and infrastructure constraints need surmounting for sustained implementation beyond the COVID-19 pandemic.
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- 2022
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24. Juggling cancer and life in survivorship: The role of general practitioners
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Allan Ben Smith, Louisa G. Gordon, Nicolas H. Hart, Megan Crichton, Kim Hobbs, Carla Thamm, and Raymond J. Chan
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Biopsychosocial model ,Cancer survivorship ,Referral ,business.industry ,media_common.quotation_subject ,MEDLINE ,Australia ,Cancer ,Survivorship ,medicine.disease ,Health services ,Nursing ,Cancer Survivors ,General Practitioners ,Survivorship curve ,Neoplasms ,medicine ,Quality of Life ,Humans ,Quality (business) ,Family Practice ,business ,media_common - Abstract
BackgroundThe number of cancer survivors in Australia is growing. General practitioners (GPs) have a key role in providing holistic care to people experiencing a cancer diagnosis, receiving treatment or enduring long-term effects of cancer and its treatment. Cancer survivors experience a range of unique biopsychosocial issues, requiring significant and coordinated care to optimise their quality of life.ObjectiveThe aim of this article is to provide an overview of management strategies for GPs in addressing three highly distressing cancer-related issues: fear of cancer recurrence, financial toxicity and management of relationships.DiscussionRecommendations are provided for effective screening and monitoring of cancer-related issues, with management strategies outlined to facilitate GP-initiated discussions and referral to credible resources and other health services. Useful materials relevant to the Australian primary care setting are presented together with an overview of information to support GP provision of cancer survivorship care for fear of cancer recurrence, financial toxicity and relationship issues.
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- 2021
25. 'We Have to Be Strong Ourselves': Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer
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Adam J. Masa, Joan Cunningham, Kate Anderson, Allan Ben Smith, Gail Garvey, Samar M. Aoun, Daniel Lindsay, Shaouli Shahid, Claire E. Wakefield, Lorraine Bell, Afaf Girgis, and Abbey Diaz
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Adult ,Native Hawaiian or Other Pacific Islander ,Health, Toxicology and Mutagenesis ,health care facilities, manpower, and services ,unmet needs ,Article ,Indigenous ,03 medical and health sciences ,0302 clinical medicine ,Nursing ,Neoplasms ,Health Services, Indigenous ,Humans ,cancer ,030212 general & internal medicine ,Sociology ,Qualitative Research ,health care economics and organizations ,Cancer mortality ,Interpretative phenomenological analysis ,Qualitative interviews ,Australia ,Public Health, Environmental and Occupational Health ,cultural needs ,social sciences ,Focus group ,humanities ,Torres strait ,Caregivers ,030220 oncology & carcinogenesis ,qualitative ,family carers ,Medicine ,Thematic analysis ,human activities ,Qualitative research - Abstract
Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer. This article explored these needs through a qualitative study. Twenty-two semi-structured qualitative interviews and one focus group were conducted with carers of Aboriginal and Torres Strait Islander adults with cancer (n = 12) and Aboriginal and Torres Strait Islander cancer survivors (n = 15) from Queensland, Australia. Half of the carers interviewed were Aboriginal or Torres Strait Islander Australians. Interviews were transcribed, coded and thematically analysed following an interpretive phenomenological approach. Thematic analysis of carer and survivor interviews revealed four key themes relating to carers’ needs: managing multiple responsibilities, maintaining the carer’s own health and wellbeing, accessing practical support and information, and engaging with the health system. Within these overarching themes, multiple needs were identified including specific needs relevant for carers of Aboriginal and Torres Strait Islander peoples, such as advocating for the patient, accessing Indigenous support services and health workers, and ensuring that the cultural needs of the person are recognised and respected. Identifying the needs of informal carers of Aboriginal and Torres Strait Islander cancer patients will enable greater understanding of the support that carers require and inform the development of strategies to meet these areas of need.
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- 2021
26. Effect of Psychological Intervention on Fear of Cancer Recurrence: A Systematic Review and Meta-Analysis
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Sophie Lebel, Nina M Tauber, Sébastien Simard, Allan Ben Smith, Jacqueline Galica, Belinda Thewes, Mia Skytte O'Toole, Robert Zachariae, Judith B. Prins, Andreas Dinkel, Gerry Humphris, Louise Sharpe, Gozde Ozakinci, and Christine Maheu
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Adult ,Male ,Oncology ,Cancer Research ,medicine.medical_specialty ,medicine.medical_treatment ,Treatment outcome ,MEDLINE ,Psychological intervention ,Cancer recurrence ,03 medical and health sciences ,0302 clinical medicine ,Neoplasm Recurrence ,Cancer Survivors ,Risk Factors ,Neoplasms ,Internal medicine ,Adaptation, Psychological ,medicine ,Humans ,030212 general & internal medicine ,Review Articles ,Aged ,Randomized Controlled Trials as Topic ,Cognitive Behavioral Therapy ,business.industry ,Cancer ,Fear ,Middle Aged ,medicine.disease ,Women's cancers Radboud Institute for Health Sciences [Radboudumc 17] ,ddc ,Cognitive behavioral therapy ,Treatment Outcome ,Phobic Disorders ,030220 oncology & carcinogenesis ,Meta-analysis ,Female ,Neoplasm Recurrence, Local ,business - Abstract
PURPOSE Fear of cancer recurrence (FCR) is a significantly distressing problem that affects a substantial number of patients with and survivors of cancer; however, the overall efficacy of available psychological interventions on FCR remains unknown. We therefore evaluated this in the present systematic review and meta-analysis. METHODS We searched key electronic databases to identify trials that evaluated the effect of psychological interventions on FCR among patients with and survivors of cancer. Controlled trials were subjected to meta-analysis, and the moderating influence of study characteristics on the effect were examined. Overall quality of evidence was evaluated using the GRADE system. Open trials were narratively reviewed to explore ongoing developments in the field (PROSPERO registration no.: CRD42017076514). RESULTS A total of 23 controlled trials (21 randomized controlled trials) and nine open trials were included. Small effects (Hedges’s g) were found both at postintervention ( g = 0.33; 95% CI, 0.20 to 0.46; P < .001) and at follow-up ( g = 0.28; 95% CI, 0.17 to 0.40; P < .001). Effects at postintervention of contemporary cognitive behavioral therapies (CBTs; g = 0.42) were larger than those of traditional CBTs ( g = 0.24; β = .22; 95% CI, .04 to .41; P = .018). At follow-up, larger effects were associated with shorter time to follow-up (β = −.01; 95% CI, −.01 to −.00; P = .027) and group-based formats (β = .18; 95% CI, .01 to .36; P = .041). A GRADE evaluation indicated evidence of moderate strength for effects of psychological intervention for FCR. CONCLUSION Psychological interventions for FCR revealed a small but robust effect at postintervention, which was largely maintained at follow-up. Larger postintervention effects were found for contemporary CBTs that were focused on processes of cognition—for example, worry, rumination, and attentional bias—rather than the content, and aimed to change the way in which the individual relates to his or her inner experiences. Future trials could investigate how to further optimize and tailor interventions to individual patients’ FCR presentation.
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- 2019
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27. Psychological intervention (ConquerFear) for treating fear of cancer recurrence: mediators and moderators of treatment efficacy
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Phyllis Butow, K Grunewald, Stephanie Tesson, Jane Beith, Belinda Thewes, Joanna E. Fardell, Afaf Girgis, S Day, Allan Ben Smith, Louise Sharpe, Jane Turner, and Jemma Gilchrist
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Adult ,Male ,Mediation (statistics) ,media_common.quotation_subject ,Psychological intervention ,chemical and pharmacologic phenomena ,Anxiety ,Relaxation Therapy ,Acceptance and commitment therapy ,law.invention ,Treatment and control groups ,03 medical and health sciences ,Metacognitive therapy ,Cognition ,0302 clinical medicine ,Cancer Survivors ,Randomized controlled trial ,Risk Factors ,law ,Humans ,Medicine ,Attention ,030212 general & internal medicine ,Acceptance and Commitment Therapy ,media_common ,Relaxation (psychology) ,Oncology (nursing) ,business.industry ,Fear ,Middle Aged ,Emotional Regulation ,Psychotherapy ,Treatment Outcome ,Phobic Disorders ,Oncology ,030220 oncology & carcinogenesis ,Female ,Neoplasm Recurrence, Local ,Worry ,Metacognition ,business ,Follow-Up Studies ,Clinical psychology - Abstract
ConquerFear is an efficacious intervention for fear of cancer recurrence (FCR) that demonstrated greater improvements than an attention control (relaxation training) in a randomized controlled trial. This study aimed to determine mediators and moderators of the relative treatment efficacy of ConquerFear versus relaxation. One hundred and fifty-two cancer survivors completed 5 therapy sessions and outcome measures before and after intervention and at 6 months’ follow-up. We examined theoretically relevant variables as potential mediators and moderators of treatment outcome. We hypothesized that metacognitions and intrusions would moderate and mediate the relationship between treatment group and FCR level at follow-up. Only total FCR score at baseline moderated treatment outcome. Participants with higher levels of FCR benefited more from ConquerFear relative to relaxation on the primary outcome. Changes in metacognitions and intrusive thoughts about cancer during treatment partially mediated the relationship between treatment group and FCR. These results show that ConquerFear is relatively more effective than relaxation for those with overall higher levels of FCR. The mediation analyses confirmed that the most likely mechanism of treatment efficacy was the reduction in unhelpful metacognitions and intrusive thoughts during treatment, consistent with the theoretical framework underpinning ConquerFear. ConquerFear is a brief, effective treatment for FCR in cancer survivors with early-stage disease. The treatment works by reducing intrusive thoughts about cancer and changing beliefs about worry and is particularly helpful for people with moderate to severe FCR.
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- 2019
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28. Robot or radiation? A qualitative study of the decision support needs of men with localised prostate cancer choosing between robotic prostatectomy and radiotherapy treatment
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Allan Ben Smith, Pascal Mancuso, Megan Berry, Afaf Girgis, Karen Wong, Leslie Bokey, Dion Forstner, Orlando Rincones, and Mark Sidhom
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Male ,medicine.medical_specialty ,Decision support system ,Referral ,medicine.medical_treatment ,Interviews as Topic ,03 medical and health sciences ,Prostate cancer ,0302 clinical medicine ,Robotic Surgical Procedures ,medicine ,Humans ,Medical physics ,030212 general & internal medicine ,Robotic prostatectomy ,Qualitative Research ,Radiation oncologist ,Aged ,Prostatectomy ,business.industry ,030503 health policy & services ,Prostatic Neoplasms ,Patient Preference ,General Medicine ,Middle Aged ,medicine.disease ,Radiation therapy ,Thematic analysis ,0305 other medical science ,business ,Decision Making, Shared ,Qualitative research - Abstract
Objective To understand how best to support men diagnosed with localised prostate cancer to decide which treatment option best suits their needs, when robotic prostatectomy and radiotherapy are equally appropriate to offer them. Methods Twenty-five men recently diagnosed with localised prostate cancer completed semi-structured interviews asking about information/decision-making needs before and/or after attending a combined clinic in which they consulted a urologist and a radiation oncologist regarding treatment options. Data was transcribed verbatim and thematically analysed. Results Most men preferred robotic prostatectomy pre-combined clinic and chose it afterwards. The thematic analysis revealed four themes: 1) trust in clinicians and the information they provide is critical for treatment choice, 2) perceived fit between treatment characteristics and personal circumstances, 3) additional considerations: specific side effects, socio-emotional and financial factors, and 4) need for tailored information delivery. Robotic prostatectomy was mistakenly believed to provide a more definitive cure than radiotherapy, which was seen as having a lesser lifestyle impact. Conclusions Treatment choice is largely dependent on clinicians’ (mainly urologists’) recommendations. Practice implications Patients need more balanced information about alternatives to robotic prostatectomy earlier in the treatment decision-making process. Referral to a radiation oncologist or combined clinic shortly after diagnosis is recommended.
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- 2019
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29. A Systematic Review of Fear of Cancer Recurrence Among Indigenous and Minority Peoples
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Kate Anderson, Allan ‘Ben' Smith, Abbey Diaz, Joanne Shaw, Phyllis Butow, Louise Sharpe, Afaf Girgis, Sophie Lebel, Haryana Dhillon, Linda Burhansstipanov, Boden Tighe, and Gail Garvey
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review—systematic ,Inclusion (disability rights) ,Population ,Ethnic group ,fear of cancer recurrence ,chemical and pharmacologic phenomena ,Indigenous ,03 medical and health sciences ,0302 clinical medicine ,medicine ,Psychology ,cancer ,030212 general & internal medicine ,education ,General Psychology ,education.field_of_study ,Indigenous people ,minority ,Cancer ,medicine.disease ,BF1-990 ,Systematic review ,030220 oncology & carcinogenesis ,oncology ,Anxiety ,Systematic Review ,medicine.symptom ,Psychosocial ,Demography - Abstract
While cancer survivors commonly experience fear and anxiety, a substantial minority experience an enduring and debilitating fear that their cancer will return; a condition commonly referred to as fear of cancer recurrence (FCR). Despite recent advances in this area, little is known about FCR among people from Indigenous or other ethnic and racial minority populations. Given the high prevalence and poor outcomes of cancer among people from these populations, a robust understanding of FCR among people from these groups is critical. The current review identified and aggregated existing literature on FCR amongst adult cancer survivors from Indigenous and minority populations. The protocol of this review was registered with PROSPERO in July 2020 (Registration number: CRD42020161655). A systematic search of bibliographic databases was conducted for relevant articles published from 1997 to November 2019. Data from eligible articles were extracted and appraised for quality by two independent reviewers. Nineteen articles from four countries (United States of America, Canada, Australia and the United Kingdom) met the inclusion criteria, including 14 quantitative, 4 qualitative and 1 mixed-methods study. Only one article reported on an Indigenous population. Few studies reported on FCR prevalence (n = 3) or severity (n = 9). While the variation in tools used to measure FCR hindered a robust estimate of severity, results suggested some differences in FCR severity between minority and dominant populations, although these may have been due to study metholodological differences. Few factors were reported as being associated with FCR in minorities across multiple studies. The qualitative synthesis found five themes associated with the lived experience of FCR: (i) variations in the lived experience of FCR; (ii) spirituality and worldview impacting on FCR; (iii) the importance of staying positive; (iv) complexities around support; and (v) increasing cancer knowledge. The findings of this review highlight differences in FCR across cultures and contexts, which reinforces the need for culturally-specific approaches to this condition. The dearth of research in this area is of concern given the significant burden of cancer in these populations. A deeper understanding of this condition among Indigenous and minority populations is critical to developing and delivering appropriate and effective psychosocial care for cancer survivors from these groups. Systematic Review Registration: identifier [CRD42020161655].
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- 2021
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30. An Updated Systematic Review of Quantitative Studies Assessing Anxiety, Depression, Fear of Cancer Recurrence or Psychological Distress in Testicular Cancer Survivors
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Orlando Rincones, Allan Ben Smith, Martin R. Stockler, Sayeda Naher, and Rebecca Mercieca-Bebber
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0301 basic medicine ,Psychological intervention ,MEDLINE ,fear of cancer recurrence ,PsycINFO ,Review ,03 medical and health sciences ,0302 clinical medicine ,Medicine ,cancer survivors ,Depression (differential diagnoses) ,business.industry ,distress ,testicular neoplasms ,anxiety ,Distress ,030104 developmental biology ,Systematic review ,Oncology ,030220 oncology & carcinogenesis ,depression ,Anxiety ,medicine.symptom ,Sexual function ,business ,Clinical psychology - Abstract
Purpose A diagnosis of testicular cancer (TC) at a relatively young age can have a dramatic impact on the psychological well-being of those affected. The aim of this review was to synthesize recent evidence to provide an updated account of the prevalence, severity and correlates of anxiety, depression, fear of cancer recurrence (FCR) and distress in TC survivors. Patients and methods A systematic literature review was conducted from September 2017 until June 2020 using electronic databases including Embase, MEDLINE, PsycINFO, Scopus and Web of Science. Study eligibility and quality were independently assessed by two reviewers. Narrative synthesis was used to depict the severity (mean/median scores), prevalence (proportions above standard clinical thresholds) and correlates of study outcomes. Results A total of 988 articles were identified for screening after duplicate removal. Fifty-six full-text articles were screened, and eight articles met the inclusion criteria. The reported prevalence of the outcomes varied across studies (clinical levels of anxiety ranged from 6.9% to 21.1%, depression varied from 4.7% to 7%, distress was found between 25% and 41.4%, prevalence of FCR was not reported). Few studies compared TC survivors with other populations. Correlates of poorer psychological outcomes included younger age, relationship status, employment status, poorer sexual functioning, impaired masculinity and coping strategies. Conclusion Anxiety seems to be the most common issue for TC survivors. Men who are single or unemployed appear most at risk of poorer psychological outcomes, which seem associated with impaired masculinity and sexual function. More research is needed to identify TC survivors most likely to need one of the increasing number of psychological interventions being developed for TC survivors.
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- 2021
31. Patient-Reported Outcomes Associated with Treatments for Testicular Cancer: A Systematic Review
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Allan Ben Smith, Rebecca Mercieca-Bebber, Orlando Rincones, Sayeda Naher, and Martin R. Stockler
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Chemotherapy ,medicine.medical_specialty ,business.industry ,Sexual functioning ,030503 health policy & services ,medicine.medical_treatment ,MEDLINE ,CINAHL ,Review ,medicine.disease ,testicular cancer ,Radiation therapy ,cancer survivorship ,03 medical and health sciences ,0302 clinical medicine ,Quality of life ,quality of life ,patient-reported outcomes ,030220 oncology & carcinogenesis ,Medicine ,0305 other medical science ,business ,Intensive care medicine ,Psychosocial ,Testicular cancer - Abstract
Background Testicular cancer and its treatment can have major short- and long-term effects on the health-related quality of life of those affected. This systematic review aims to summarise patient-reported outcome (PRO) data concerning health-related quality of life, functional impacts and common side-effects of treatments for testicular cancer. Methods We systematically searched Medline OVID, CINAHL, PubMed, Embase and the Patient-Reported Outcomes Over Time In Oncology (PROMOTION) databases from inception to 25 March 2020, using "testicular cancer" and "PRO" search terms developed in conjunction with a medical librarian. Two authors screened abstracts and full-text articles for studies that reported primary PRO data related to the treatment of testicular cancer including at least 50 participants. We excluded psychosocial data as this was included in our companion review. Data were extracted by three reviewers, and quality was assessed by two reviewers using QUAL-SYST. Studies with a quality of score over 65% were included in our narrative synthesis. Results A total of 1831 records were identified via our database searches and 41 met inclusion criteria. Of these, 35 included participants who had chemotherapy. Twenty-eight different PRO measures were used across the 41 studies. Of the 41 studies, 29 had quality scores over 65% and were included in our narrative synthesis. We found that chemotherapy was generally associated with a higher side-effect burden than other treatments, and higher burden was associated with higher doses of chemotherapy. Hearing problems, peripheral neuropathy, and Raynaud's phenomena were particularly common side-effects. Problems with sexual functioning were associated with chemotherapy, radiotherapy and surgery. Discussion While many studies found that between-treatment differences resolved within the first 12 months since diagnosis, there were many long-term and dose-dependent impacts associated with chemotherapy and radiotherapy across PRO domains. Offering information about these aspects, and information about expected survival outcomes, will help inform, prepare, and empower patients to make decisions about treatment aligned with their preferences and personal situations.
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- 2021
32. Low conflict and high satisfaction: Decisional outcomes after attending a combined clinic to choose between robotic prostatectomy and radiotherapy for prostate cancer
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Allan Ben Smith, Karen Wong, Mark Sidhom, Afaf Girgis, Diana Ngo, Orlando Rincones, Pascal Mancuso, Lesley Bokey, Megan Berry, and Dion Forstner
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Male ,medicine.medical_specialty ,Urology ,medicine.medical_treatment ,Decision Making ,Emotions ,030232 urology & nephrology ,Decisional conflict ,03 medical and health sciences ,Prostate cancer ,0302 clinical medicine ,McNemar's test ,Robotic Surgical Procedures ,medicine ,Humans ,Radiation oncologist ,Aged ,Prostatectomy ,business.industry ,Public health ,Prostatic Neoplasms ,Regret ,Middle Aged ,medicine.disease ,Radiation therapy ,Oncology ,Patient Satisfaction ,030220 oncology & carcinogenesis ,Physical therapy ,Self Report ,business - Abstract
Decisional conflict and post-treatment decisional regret have been documented in men with localised prostate cancer (LPC). However, there is limited evidence regarding decisional outcomes associated with the choice between robotic-assisted radical prostatectomy (RARP) and radiotherapy, when both treatment options are available in the public health system. There is increasing support for multidisciplinary approaches to guide men with LPC in their decision-making process. This study assessed decisional outcomes in men deciding between RARP or radiotherapy treatment before and after attending a LPC combined clinic (CC).Quantitative longitudinal data were collected from 52 men who attended a LPC CC, where they saw both a urologist and radiation oncologist. Patients completed questionnaires assessing involvement in decision-making, decisional conflict, satisfaction and regret before and after the CC, three months, six months and 12 months post-treatment. Urologists and radiation oncologists also reported their perceptions regarding patients' suitability for, openness to, perceived preferences and appropriateness for each treatment. Data was analysed using paired/independent samples t-tests and McNemar's tests.Most participants (n = 37, 71%) opted for RARP over radiotherapy (n = 14, 27%); one participant deferred treatment (2%). Urologists and radiation oncologists reported low agreement (κ = 0.26) regarding the most appropriate treatment for each patient. Participants reported a desire for high levels of control over their decision-making process (77.5% patient-led, 22.5% shared) and high levels of decisional satisfaction (M = 4.4, SD = 0.47) after the CC. Decisional conflict levels were significantly reduced (baseline: M = 29.3, SD = 16.9, post-CC: M = 16.3, SD = 11.5; t = 5.37, P0.001) after the CC. Mean decisional regret scores were 'mild' at three-months (M = 16.0, SD = 17.5), six-months (M = 18.8, SD = 18.7) and 12-months (M = 18.2, SD = 15.1) post-treatment completion.This is the first Australian study to assess decisional outcomes when patients are offered the choice between RARP and radiotherapy in the public health system. A CC seems to support decision-making in men with LPC and positively impact some decisional outcomes. However, larger-scale controlled studies are needed to confirm these findings.
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- 2021
33. A systematic review of fear of cancer recurrence related healthcare use and intervention cost-effectiveness
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Allan Ben Smith, Jake Thomas Warton Williams, and Alison Pearce
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Adult ,medicine.medical_specialty ,Cost effectiveness ,Cost-Benefit Analysis ,MEDLINE ,chemical and pharmacologic phenomena ,Experimental and Cognitive Psychology ,CINAHL ,03 medical and health sciences ,0302 clinical medicine ,Quality of life (healthcare) ,Health care ,medicine ,Humans ,030212 general & internal medicine ,Intensive care medicine ,business.industry ,Australia ,Fear ,Checklist ,Psychiatry and Mental health ,Critical appraisal ,Oncology ,030220 oncology & carcinogenesis ,Economic evaluation ,Quality of Life ,Neoplasm Recurrence, Local ,business ,Delivery of Health Care - Abstract
Objective Fear of cancer recurrence (FCR) is a common and burdensome psychological condition affecting cancer survivors. This systematic review aims to synthesise current evidence regarding: (1) FCR-related healthcare usage and costs and (2) the cost-effectiveness of FCR treatments. Methods We searched MEDLINE, CINAHL, Cochrane and other electronic databases using MeSH headings and keywords for cancer, FCR and costs from their inception to September 2019. Identified studies were screened for eligibility. Original, peer-reviewed journal articles reporting quantitative data from samples of adults treated for cancer written in English were included. Quality was appraised using the Drummond checklist for economic evaluations or the relevant Joanna Briggs Institute Critical Appraisal Tool. Results Data from 11 studies were extracted and synthesised. Seven studies addressed the costs of FCR and suggested an increase in the use of primary and secondary healthcare. Four studies addressed the cost-effectiveness of different FCR treatments and suggest that some treatments may cost-effectively reduce FCR and improve quality of life. Reviewed treatments had an incremental cost-effectiveness ratio between AU$3,233 and AU$152,050 per quality-adjusted life year gained when adjusted to 2019 Australian dollars. All studies were of sufficient quality to be synthesised in this review. Conclusions FCR appears to be associated with greater use of certain healthcare resources, and FCR may be treated cost-effectively. Thus, appropriate FCR treatments may not only reduce the individual burden, but also the strain on the healthcare system. Further high-quality research is needed to confirm this and ensure the future implementation of efficient and sustainable FCR treatments.
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- 2021
34. Is a Brief Online Booklet Sufficient to Reduce Fear of Cancer Recurrence or Progression in Women With Ovarian Cancer?
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Louise Sharpe, Allan Ben Smith, Hayley Russell, Poorva Pradhan, and Phyllis Butow
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medicine.medical_specialty ,medicine.medical_treatment ,Population ,lcsh:BF1-990 ,Psychological intervention ,fear of cancer recurrence ,chemical and pharmacologic phenomena ,Cancer recurrence ,03 medical and health sciences ,0302 clinical medicine ,Internal medicine ,medicine ,Psychoeducation ,Psychology ,cancer ,Medical history ,030212 general & internal medicine ,education ,General Psychology ,Original Research ,education.field_of_study ,Cancer ,fear of cancer progression ,medicine.disease ,ovarian cancer ,lcsh:Psychology ,030220 oncology & carcinogenesis ,psychoeducation ,oncology ,Ovarian cancer ,Psychosocial ,neoplasm - Abstract
Background: Fear of cancer recurrence or progression (FCR/P) is a common challenge experienced by people living with and beyond cancer and is frequently endorsed as the highest unmet psychosocial need amongst survivors. This has prompted many cancer organizations to develop self-help resources for survivors to better manage these fears through psychoeducation, but little is known about whether they help reduce FCR/P.Method: We recruited 62 women with ovarian cancer. Women reported on their medical history and demographic characteristics and completed the Fear of Progression Questionnaire-Short Form (FoP-Q-SF). They then read a booklet on FCR specifically created for Ovarian Cancer Australia by two of the authors (ABS and PB). One week after reading the booklet, 50/62 women (81%) completed the FoP-Q-SF and answered questions about their satisfaction with the booklet.Results: More than half of the women (35/62; 56.5%) scored in the clinical range for FCR/P at baseline. Of the completers, 93% said that they would recommend the booklet to other women. Satisfaction with the booklet was relatively high (75.3/100) and more than two-thirds of women rated it as moderately helpful or better. However, FCR/P did not change significantly over the week following reading the booklet [t(49) = 1.71, p = 0.09]. There was also no difference in change in FCR/P between women in the clinical vs. non-clinical range on the FoP-Q. Women high in FCR/P rated the booklet as less helpful in managing FCR/P (r = −0.316, p = 0.03), but overall satisfaction with the booklet was not associated with degree of FCR/P (r = −0.24, p = 0.10).Conclusions: These results suggest that a simple online FCR booklet is acceptable to women with ovarian cancer and they are satisfied with the booklet, but, it was insufficient to change in FCR/P levels. These results suggest that such resources are valued by women with ovarian cancer, but more potent interventions are necessary to reduce FCR in this population.
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- 2021
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35. The experiences of caregivers of Indigenous cancer survivors in Australia, Canada, New Zealand, and the United States: a systematic review
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Helena Martinez-Bredeck, Afaf Girgis, Allan Ben Smith, Tamara L. Butler, Kate Anderson, Adam J. Masa, Gail Garvey, Joan Cunningham, Samar M. Aoun, Claire E. Wakefield, and Shaouli Shahid
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Cancer survivor ,business.industry ,Scopus ,Cancer ,PsycINFO ,CINAHL ,social sciences ,medicine.disease ,Indigenous ,humanities ,Nursing ,Health care ,medicine ,population characteristics ,business ,Psychology ,human activities ,Qualitative research ,Uncategorized - Abstract
Background: Caregivers of Indigenous cancer survivors provide critical unpaid support to survivors, yet they rarely receive information or training for this role and may themselves benefit from support services. Little is documented about the experiences of caregivers of Indigenous cancer survivors. The aim of this systematic review was to identify and aggregate qualitative research describing the experiences of caregivers of Indigenous cancer survivors in Australia, New Zealand, Canada and the United States.Methods: We systematically searched PsycINFO, PubMed, CINAHL, Embase, Scopus and Web of Science using keywords relating to Indigenous populations; caregivers; and cancer. Data were extracted from original qualitative research articles published up to March 2020.Results: From 24 full-text articles, 14 articles from 13 studies were analyzed using meta-aggregation. This highlighted key caregiver experiences relating to: the need for information about cancer and services; providing and receiving support; communication challenges and responsibilities; balancing caregiver roles and emotions; and culturally unsafe health systems and settings. Caregivers of Indigenous cancer survivors often act as mediator between Western biomedical approaches to cancer care and Indigenous peoples’ holistic and family-focused views of health and wellbeing, aiming to ensure that both health professionals and the cancer survivors understand each other's perspectives and preferences for care. Caregivers expressed preferences for family-focussed rather than patient-focussed care. Culturally unsafe health care systems created barriers to optimal care.Conclusions: The findings reveal caregivers’ unique experiences of caring for an Indigenous cancer survivor, and identifies several unmet needs which should be appropriately and systematically addressed. Caregivers should be regarded as co-clients with their own needs as well as co-workers with health professionals providing cancer care. Ultimately supporting caregivers will contribute to improving health outcomes for Indigenous cancer survivors.
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- 2021
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36. Cancer information overload: Association between a brief version of the CIO scale and multiple cancer risk management behaviours
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Alexandra Rouquette, Julien Mancini, Allan Ben Smith, Martin Breyton, Dupuis, Christine, Sciences Economiques et Sociales de la Santé & Traitement de l'Information Médicale (SESSTIM - U1252 INSERM - Aix Marseille Univ - UMR 259 IRD), Institut de Recherche pour le Développement (IRD)-Aix Marseille Université (AMU)-Institut National de la Santé et de la Recherche Médicale (INSERM), Centre for Oncology Education and Research Translation [Liverpool, NSW, Australia] (CONCERT), University of New South Wales [Sydney] (UNSW)-Ingham Institute for Applied Medical Research [Liverpool, NSW, Australia]-South Western Sydney Clinical School [Liverpool, NSW, Australia], Psycho-Oncology Co-operative Research Group [Sydney, Australia] (School of Psychology - PoCoG), The University of Sydney, Departement d'épidémiologie, AP-HP Hôpital Bicêtre (Le Kremlin-Bicêtre), Service de santé publique [CHU Bicêtre], Centre de recherche en épidémiologie et santé des populations (CESP), Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Paul Brousse-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris-Saclay, Service Biostatistique et Technologies de l’Information et de la Communication [AP-HM Hôpital de la Timone] (BioSTIC), Hôpital de la Timone [CHU - APHM] (TIMONE), Biostatistique et technologies de l'information et de la communication (BioSTIC) - [Hôpital de la Timone - APHM] (BiosTIC ), Assistance Publique - Hôpitaux de Marseille (APHM)- Hôpital de la Timone [CHU - APHM] (TIMONE), and Ingham Institute for Applied Medical Research [Liverpool, NSW, Australia]-University of New South Wales [Sydney] (UNSW)-South Western Sydney Clinical School [Liverpool, NSW, Australia]
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Psychometrics ,[SDV]Life Sciences [q-bio] ,Logistic regression ,Cancer prevention ,Validation studies ,03 medical and health sciences ,0302 clinical medicine ,Neoplasms ,Surveys and Questionnaires ,Humans ,Measurement invariance ,030212 general & internal medicine ,Risk management ,Risk Management ,Cancer survivor ,Cancer information overload ,business.industry ,030503 health policy & services ,Australia ,Reproducibility of Results ,General Medicine ,Confirmatory factor analysis ,3. Good health ,[SDV] Life Sciences [q-bio] ,Scale (social sciences) ,Health behaviour ,France ,Factor Analysis, Statistical ,0305 other medical science ,business ,Psychology ,Clinical psychology - Abstract
Objectives To demonstrate the best psychometric properties of the revised 5-item Cancer Information Overload (CIO) scale over the 10- and 8-item versions, for both English and French native speakers, and to explore the relationships between CIO and several cancer risk management behaviours in a large sample of caregivers, cancer survivors and healthy subjects. Methods 2809 participants (2568 from France, 241 from Australia) from two cancer survivor networks answered a self-administered questionnaire. After assessing the psychometric properties we studied the impact of CIO on health behaviours using multivariate logistic regression. Results Internal consistency assessment and Confirmatory Factor Analysis (CFA) showed satisfactory results ( α = 0.87 and 0.83, ω = 0.87 and 0.83, RMSEA = 0.078 and 0.081 for the 8-item and 5-item versions respectively), as well as multi-group CFA where measurement invariance was partial for one item only in each version. CIO was independently associated with smoking, sunburns, and rare skin checks, but not with alcohol misuse. Conclusion The 5-item version of the CIO scale showed adequate psychometric properties and discriminant association with multiple prevention behaviours. Practice implications The 5-item CIO scale is valid and can help push research forward in the domain of disease prevention and message acceptance. Its role in clinical practice remains to be determined.
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- 2021
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37. Barriers and facilitators to the availability of efficacious self-directed digital health tools for adults living with cancer and their caregivers: A systematic literature review and author survey study
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Kristen S. Higgins, Christine T. Chambers, Adeola Bamgboje-Ayodele, Lisa Beatty, Camille E. Short, Joanna E. Fardell, Joanne Shaw, Afaf Girgis, Perri R. Tutelman, and Allan Ben Smith
- Subjects
Adult ,Government ,Medical education ,Self-management ,Process (engineering) ,030503 health policy & services ,Timeline ,Survey research ,General Medicine ,Digital health ,03 medical and health sciences ,0302 clinical medicine ,Systematic review ,Caregivers ,Neoplasms ,Surveys and Questionnaires ,Humans ,030212 general & internal medicine ,0305 other medical science ,Psychology ,Inclusion (education) ,Delivery of Health Care - Abstract
Objective This study aimed to examine barriers and facilitators to the dissemination of efficacious self-directed digital health tools for adults affected by cancer, and quantify funding used to develop and evaluate these digital health tools. Methods We conducted: (1) a systematic literature review to identify efficacious self-directed digital health tools for adults affected by cancer, published between 2009 and 2019 and (2) an author survey to identify barriers and facilitators to dissemination of those tools, grant funding and the user centredness of their design (UCD) process. Results Of 1314 screened articles, 29 articles describing 26 tools met the inclusion criteria. From 26 surveys sent, 12 were completed, 6 of which described disseminated tools. Whilst researchers’ motivation and infrastructure support facilitate tool dissemination, limited funds, lack of infrastructure and limited research timelines are the most common barriers. A median of AUD$250,000 was spent on tools not disseminated to end-users. Conclusion Although incorporating UCD processes in the development of digital health tools is important, it is imperative to integrate implementation processes into the planning stages of tool development to ensure dissemination. Practice Implications Researchers, academic institutions, funding agencies and government and non-government organisations all have roles to play to support long-term implementation.
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- 2020
38. Cancer information overload and multiple prevention behaviors
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Martin Breyton, Allan Ben Smith, Julien Mancini, Alexandra Rouquette, Sciences Economiques et Sociales de la Santé & Traitement de l'Information Médicale (SESSTIM - U1252 INSERM - Aix Marseille Univ - UMR 259 IRD), Institut de Recherche pour le Développement (IRD)-Aix Marseille Université (AMU)-Institut National de la Santé et de la Recherche Médicale (INSERM), University of New South Wales [Sydney] (UNSW), Psycho-Oncology Co-operative Research Group [Sydney, Australia] (School of Psychology - PoCoG), The University of Sydney, Centre for Oncology Education and Research Translation [Liverpool, NSW, Australia] (CONCERT), Ingham Institute for Applied Medical Research [Liverpool, NSW, Australia]-University of New South Wales [Sydney] (UNSW)-South Western Sydney Clinical School [Liverpool, NSW, Australia], Centre de recherche en épidémiologie et santé des populations (CESP), Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Paul Brousse-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris-Saclay, University of New South Wales [Sydney] (UNSW)-Ingham Institute for Applied Medical Research [Liverpool, NSW, Australia]-South Western Sydney Clinical School [Liverpool, NSW, Australia], and Dupuis, Christine
- Subjects
Oncology ,medicine.medical_specialty ,business.industry ,[SDV]Life Sciences [q-bio] ,030503 health policy & services ,Public Health, Environmental and Occupational Health ,Cancer ,medicine.disease ,Information overload ,3. Good health ,[SDV] Life Sciences [q-bio] ,03 medical and health sciences ,0302 clinical medicine ,Internal medicine ,medicine ,030212 general & internal medicine ,0305 other medical science ,business - Abstract
Background Many people feel overwhelmed by the increasing amount of cancer-related material available in the information environment. Our aims was to evaluate the psychometric properties of the brief version of the cancer information overload (CIO) scale and to examine the association between CIO and multiple cancer prevention behaviors. Methods A large survey using a self-administered online questionnaire was proposed to all adult members of the Seintinelles, a French national non-profit organization. The psychometric properties of the CIO scale were evaluated. Measurement invariance across French and English languages was studied using an additional sample of 224 Australian cancer survivors from Register4. We also collected functional, communicative, and critical health literacy (FCCHL), deprivation (EPICES index), current smoking, alcohol misuse, frequent sunburns, and rare skin self-examination. Results Between June 16th and 30th 2016, 2 363 French participants answered the online questionnaire. The five-item CIO scale demonstrated the best balance between psychometric properties and number of items. It showed satisfactory internal consistency and adequate fit. No measurement invariance issue was found across age, gender, education level, and language groups. CIO was increased among people with higher deprivation, lower education and a cancer information avoidant profile. In multivariate analyses, CIO was associated with tobacco use (OR = 1.05, 95%CI [1.00-1.10]), rare skin checks (OR = 1.05 [1.01-1.08]) and frequent sunburns (OR = 1.04 [1.01-1.07]), but not with alcohol misuse. Conclusions The 5-item CIO scale is ready to be used in French and English-speaking countries. The links observed between CIO and multiple prevention behaviors encourage further research in order to better characterize the psycho-cognitive and environmental phenomena at play. Efforts are needed to communicate adequately and empower citizens to limit the growing burden of cancer. Key messages The 5-item CIO scale is ready to be used in French and English-speaking countries. Efforts are needed to communicate adequately and empower citizens to limit the growing burden of cancer.
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- 2020
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39. Feasibility and Acceptability of Fear-Less: A Stepped-Care Program to Manage Fear of Cancer Recurrence in People with Metastatic Melanoma
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Fiona A Lynch, Justine Diggens, Mark Shackleton, Haryana M. Dhillon, Hayley Burridge, Maria Ftanou, Lynda J Katona, Jane A. Elliott, Julia Lai-Kwon, Jo Phipps-Nelson, Allan Ben Smith, Victoria Dax, Michael Jefford, Joanne Shaw, Holly Kent, Donna Milne, Alison Button-Sloan, Steve Ellen, and Lahiru Russell
- Subjects
Oncology ,medicine.medical_specialty ,Metastatic melanoma ,medicine.medical_treatment ,Psychological intervention ,fear of cancer recurrence ,lcsh:Medicine ,chemical and pharmacologic phenomena ,Disease ,Cancer recurrence ,stepped care ,Targeted therapy ,03 medical and health sciences ,0302 clinical medicine ,Internal medicine ,Intervention (counseling) ,Medicine ,Stepped care ,030212 general & internal medicine ,Uncategorized ,business.industry ,lcsh:R ,General Medicine ,Immunotherapy ,030220 oncology & carcinogenesis ,business ,metastatic melanoma - Abstract
Immunotherapies and targeted therapies have revolutionised treatment of metastatic melanoma and improved survival rates. However, survivors treated with novel therapies are vulnerable to high levels of fear of cancer recurrence or progression (FCR). Existing FCR interventions have rarely been trialled in people with advanced cancer. The current study aimed to evaluate the acceptability and feasibility of Fear-Less: a stepped-care model to treat FCR in people with metastatic melanoma treated with immunotherapy or targeted therapy. Sixty-one outpatients with metastatic melanoma were screened using the Fear of Cancer Recurrence Inventory Short Form (FCRI-SF) and Fear of Progression Questionnaire Short Form (FoP-Q-SF). Survivors with subthreshold FCR were stratified to a self-management intervention while those with clinical levels of FCR were provided with an individual therapy, Conquer Fear. Survivor experience surveys and rescreening were administered post-intervention completion. Results indicated that Fear-Less was an acceptable and feasible FCR intervention. Results provided preliminary support for the potential impact of Fear-Less in reducing FCR. Fear-Less is a promising first step in providing an acceptable and feasible stepped-care model to treat FCR in survivors with metastatic disease.
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- 2020
40. Clinical trials knowledge and attitudes of Vietnamese‐ and Anglo‐Australian cancer patients: A cross‐sectional study
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Allan Ben Smith, Afaf Girgis, Anita Y. Niu, Geoff P. Delaney, Joseph Descallar, Meera Agar, and Verena S. Wu
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Male ,Cross-sectional study ,Vietnamese ,Health literacy ,03 medical and health sciences ,0302 clinical medicine ,Neoplasms ,Humans ,Medicine ,Generalizability theory ,030212 general & internal medicine ,Aged ,Multinomial logistic regression ,business.industry ,Australia ,General Medicine ,Odds ratio ,Middle Aged ,language.human_language ,Confidence interval ,Clinical trial ,Cross-Sectional Studies ,Attitude ,Vietnam ,Oncology ,030220 oncology & carcinogenesis ,language ,Female ,Patient Participation ,business ,Demography - Abstract
AIM Low participation in cancer clinical trials by culturally and linguistically diverse (CALD) patients limits access to cutting-edge treatments and generalizability of results. This is the first study exploring trials knowledge/attitudes and their association with trial participation in Vietnamese- and Anglo-Australian cancer patients. METHODS Eligible patients diagnosed with cancer in the past 10 years were invited to complete a self-report questionnaire comprising validated measures of: trials knowledge and attitudes, preferred information amount, preferred decision-making involvement, health literacy, and past and future (i.e. hypothetical) trial participation. Multivariable linear regression evaluated correlates of trials knowledge/attitudes. Multinomial logistic regression estimated the relationship between trials knowledge/attitudes and possible future trial participation. RESULTS Vietnamese-Australian participants (n = 50) had more negative attitudes regarding trials than Anglo-Australians (n = 100; B = -9.28; 95% confidence interval [CI], -17.60 to -0.97; P = 0.029), but similar knowledge (B = -0.91; 95% CI, -2.27 to 0.44; P = 0.18). Future trial participation was associated with positive attitudes (odds ratio [OR] = 1.08; 95% CI, 1.04-1.12; P
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- 2020
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41. Measurements of human tolerance to horizontal rotation within an MRI scanner: Towards gantry-free radiation therapy
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Mark Sidhom, Lois Holloway, Jason Dowling, Jarryd G. Buckley, Gary P Liney, Peter E Metcalfe, Allan Ben Smith, Paul J. Keall, and Robba Rai
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Scanner ,Rotation ,medicine.medical_treatment ,0299 Other Physical Sciences ,Soft tissue deformation ,radiation therapy ,030218 nuclear medicine & medical imaging ,03 medical and health sciences ,0302 clinical medicine ,patient rotation ,medicine ,Humans ,Radiology, Nuclear Medicine and imaging ,Adaptive radiotherapy ,Image guidance ,business.industry ,Phantoms, Imaging ,Radiotherapy Planning, Computer-Assisted ,medicine.disease ,Magnetic Resonance Imaging ,Radiation therapy ,Motion sickness ,Oncology ,030220 oncology & carcinogenesis ,Anxiety ,Radiotherapy, Intensity-Modulated ,medicine.symptom ,Nuclear medicine ,business - Abstract
Introduction: Recent advances in image guidance and adaptive radiotherapy could enable gantry-free radiotherapy using patient rotation. Gantry-free radiotherapy could substantially reduce the cost of radiotherapy systems and facilities. MRI guidance complements a gantry-free approach because of its ability to visualise soft tissue deformation during rotation. A potential barrier to gantry-free radiotherapy is patient acceptability, especially when combined with MRI. This study investigates human experiences of horizontal rotation within an MRI scanner. Methods: Ten healthy human participants and nine participants previously treated with radiotherapy were rotated within an MRI scanner. Participants' anxiety and motion sickness was assessed before being rotated in 45-degree increments and paused, representing a multi-field intensity-modulated radiotherapy treatment. An MR image was acquired at each 45-degree angle. Following imaging, anxiety and motion sickness were re-assessed, followed by a comfort questionnaire and exit interview. The significance of the differences in anxiety and motion sickness pre- versus post-imaging was assessed using Wilcoxon signed-rank tests. Content analysis was performed on exit interview transcripts. Results: Eight of ten healthy and eight of nine patient participants completed the imaging session. Mean anxiety scores before and after imaging were 7.9/100 and 11.8/100, respectively (P = 0.26), and mean motion sickness scores were 5.3/100 and 13.7/100, respectively (P = 0.02). Most participants indicated likely acceptance of rotation if MRI were to be used in a hypothetical treatment. Physical discomfort was reported to be the biggest concern. Conclusions: Horizontal rotation within an MRI scanner was acceptable for most (17/19) participants.
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- 2020
42. Study protocol: a randomized controlled trial comparing the efficacy of therapist guided internet-delivered cognitive therapy (TG-iConquerFear) with augmented treatment as usual in reducing fear of cancer recurrence in Danish colorectal cancer survivors
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Johanne Dam Lyhne, Per Fink, Lisbeth Frostholm, Allan Ben Smith, and Lars Henrik Jensen
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Cancer Research ,Cost-Benefit Analysis ,Denmark ,medicine.medical_treatment ,Anxiety ,law.invention ,Study Protocol ,Fear of cancer recurrence ,0302 clinical medicine ,Cancer Survivors ,Quality of life ,Randomized controlled trial ,law ,Medicine ,030212 general & internal medicine ,Randomized Controlled Trials as Topic ,education.field_of_study ,Depression ,Internet-based ,Fear ,lcsh:Neoplasms. Tumors. Oncology. Including cancer and carcinogens ,Distress ,Phobic Disorders ,Oncology ,030220 oncology & carcinogenesis ,medicine.symptom ,Colorectal Neoplasms ,Digital health ,medicine.medical_specialty ,Visual analogue scale ,Population ,Cognitive therapy ,lcsh:RC254-282 ,03 medical and health sciences ,Breast cancer ,Genetics ,Humans ,education ,Internet ,Cognitive Behavioral Therapy ,business.industry ,medicine.disease ,Colorectal cancer ,Quality of Life ,Physical therapy ,Neoplasm Recurrence, Local ,business - Abstract
Background Cognitive therapy has been shown to reduce fear of cancer recurrence (FCR), mainly in breast cancer survivors. The accessibility of cognitive behavioural interventions could be further improved by Internet delivery, but self-guided interventions have shown limited efficacy. The aim of this study is to test the efficacy of a therapist guided internet-delivered intervention (TG-iConquerFear) vs. augmented treatment as usual (aTAU) in Danish colorectal cancer survivors. Methods/design A population-based randomized controlled trial (RCT) comparing TG-iConquerFear with aTAU (1:1) in n = 246 colorectal cancer survivors who suffer from clinically significant FCR (Fear of Cancer Recurrence Inventory Short Form (FCRI-SF) ≥ 22 and semi-structured interview). Evaluation will be conducted at 2 weeks, 3 and 6 months post-treatment and between-group differences will be evaluated. Long-term effects will be evaluated after one year. Primary outcome will be post-treatment FCR (FCRI-SF). Secondary outcomes are global overall health and global quality of life (Visual Analogue Scales 0–100), bodily distress syndrome (BDS checklist), health anxiety (Whiteley-6), anxiety (SCL4-anx), depression (SCL6-dep) and sickness absence and health expenditure (register data). Explanatory outcomes include: Uncertainty in illness (Mishels uncertainty of illness scale, short form, MUIS), metacognitions (MCQ-30 negative beliefs about worry subscale), and perceived risk of cancer recurrence (Visual analogue Scale 1–100). Discussion This RCT will provide valuable information on the clinical and cost-effectiveness of TG-iConquerFear vs. aTAU for CRC survivors with clinical FCR, as well as explanatory variables that may act as outcome moderators or mediators. Trial registration ClinicalTrials.gov; NCT04287218, registered 25.02.2020. https://clinicaltrials.gov/ct2/results?cond=&term=NCT04287218&cntry=&state=&city=&dist=.
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- 2020
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43. Spotlight on the fear of cancer recurrence inventory (Fcri)
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Allan Ben Smith, Nina M Tauber, Jacqueline Galica, Sophie Lebel, Robert Zachariae, Sanne Jasperine van Helmondt, and Daniel S.J. Costa
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Coping (psychology) ,Younger age ,Population ,chemical and pharmacologic phenomena ,Review ,Survivorship ,Cancer recurrence ,050105 experimental psychology ,03 medical and health sciences ,0302 clinical medicine ,Survivorship curve ,Fear of recurrence ,Medicine ,cancer ,self-report measure ,0501 psychology and cognitive sciences ,030212 general & internal medicine ,education ,General Psychology ,Cancer ,education.field_of_study ,business.industry ,Questionnaire ,questionnaire ,05 social sciences ,Self-report measure ,Intervention studies ,Clinical Practice ,Psychiatry and Mental health ,fear of recurrence ,Oncology ,oncology ,Observational study ,business ,survivorship ,Clinical psychology - Abstract
Fear of cancer recurrence (FCR) is a pervasive concern for people living with cancer. The rapidly expanding FCR literature has been weakened somewhat by use of miscellaneous FCR measures of varying quality. The Fear of Cancer Recurrence Inventory (FCRI) has been widely used in observational and intervention studies and the FCRI severity subscale, also known as the FCRI-Short Form (FCRI-SF), is often used to identify potential cases of clinically significant FCR. Given the FCRI’s increasing use in research and clinical practice, we aimed to provide an overview, critique, and suggested improvements of the FCRI. Studies citing the original FCRI validation paper were identified and synthesised using narrative and meta-analytic methods. The 42-item FCRI has demonstrated a reasonably robust 7-factor structure across evaluations in multiple languages, although certain subscales (eg, Coping) demonstrate sub-optimal reliability. Confirmation of the cross-cultural equivalence of several FCRI translations is needed. Meta-analysis of FCRI-SF scores revealed a combined weighted mean score of 15.7/36, a little above the lowest proposed cut-off score (≥13) for clinical FCR. Depending on the FCRI-SF cut-off used, between 30.0% and 53.9% of the cancer population (ie, patients and survivors) appear to experience sub-clinical or clinical FCR. Higher FCRI scores were associated with younger age and female gender, pain/physical symptoms and psychological morbidity, consistent with the FCR literature generally. Issues regarding the application and interpretation of the FCRI remain. Whether the FCRI is well suited to assessing fear of progression as well as recurrence is unclear, the meaningfulness of the FCRI total score is debatable, and the use of the FCRI-SF to screen for clinical FCR is problematic, as items do not reflect established characteristics of clinical FCR. Refinement of the FCRI is needed for it to remain a key FCR assessment tool in future research and clinical practice.
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- 2020
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44. 'It sort of hit me like a baseball bat between the eyes': a qualitative study of the psychosocial experiences of mesothelioma patients and carers
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Allan Ben Smith, Afaf Girgis, Amy Waller, Shenouda Girgis, and Sylvie D. Lambert
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Male ,Mesothelioma ,medicine.medical_specialty ,Pain medicine ,sports ,Psychological intervention ,Disease ,Baseball bat ,03 medical and health sciences ,0302 clinical medicine ,Adaptation, Psychological ,sports.equipment ,medicine ,Humans ,030212 general & internal medicine ,Qualitative Research ,business.industry ,Nursing research ,Social Support ,Middle Aged ,Focus group ,Caregivers ,Oncology ,030220 oncology & carcinogenesis ,Family medicine ,Female ,business ,Psychosocial ,Qualitative research - Abstract
Mesothelioma is an insidious disease with a generally poor prognosis even after invasive treatment. This qualitative study aimed to explore the experiences of patients suffering from mesothelioma and their carers and their perceptions of how their needs may be addressed. Eligible patients and carers were identified by a lung cancer care coordinator at each participating site, and invited to participate in one-on-one semi-structured telephone interviews (n = 5 patients, n = 3 carers), or in one of two focus groups (n = 3 patients, n = 3 carers). Discussions focusing on participants’ experiences relating to physical, psychological, social, information and carer domains were audio-recorded, transcribed verbatim and thematically analysed. The five major themes identified were (1) time of diagnosis is a particularly difficult period; (2) the timeliness, accuracy and balance of mesothelioma information is problematic; (3) coping strategies ranged from antagonism to acceptance; (4) the emotional and physical load of caring for the patient is significant and (5) carers need one-on-one support. Mesothelioma patients and their carers face significant challenges, particularly around the time of diagnosis and in the physical, psychological and social/practical domains. There is a clear need for additional information, delivered in a timely and psychologically sensitive manner, as well as for practical and emotional support. Quantitative research may shed greater light on the prevalence and severity of challenges and needs reported by participants, and determine the usefulness of resources such as case workers and dyadic coping interventions in addressing these.
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- 2018
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45. Lower trial participation by culturally and linguistically diverse (CALD) cancer patients is largely due to language barriers
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Allan Ben Smith, Melissa Grand, Pinky Patel, Jennifer Aung, Geoff P. Delaney, Kelsey Dobell-Brown, Afaf Girgis, Joseph Descallar, Meera Agar, and Nasreen Kaadan
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Male ,medicine.medical_specialty ,Language barrier ,Logistic regression ,03 medical and health sciences ,0302 clinical medicine ,Neoplasms ,medicine ,Humans ,030212 general & internal medicine ,Patient participation ,Aged ,Neoplasm Staging ,Retrospective Studies ,Clinical Trials as Topic ,business.industry ,Communication Barriers ,Retrospective cohort study ,Cultural Diversity ,General Medicine ,Odds ratio ,Middle Aged ,Health equity ,Clinical trial ,Oncology ,030220 oncology & carcinogenesis ,Family medicine ,Limited English proficiency ,Physical therapy ,Female ,New South Wales ,Patient Participation ,business - Abstract
Aim Clinical trials play a critical role in advancing cancer care, but international research shows that few cancer patients, particularly culturally and linguistically diverse (CALD) patients, participate in trials. This limits generalizability of trial results and increases health disparities. This study aimed to establish rates and correlates of trial participation among CALD patients in South Western Sydney Local Health District (SWSLHD), a highly culturally diverse area. Methods Data from all cancer patients diagnosed and/or treated in SWSLHD from January 2006 to July 2016 were analyzed retrospectively. The primary outcome was trial enrolment among patients born in non-English speaking countries (CALD) versus English speaking countries (non-CALD). Multivariable logistic regression evaluated CALD status as a predictor of trial participation. Moderators of trial participation by the different CALD groups, namely those whose preferred language was English (CALD-PLE) or was not English (CALD-PLNE), were examined by testing interactions between CALD status and other demographic and clinical variables. Results A total of 19 453 patients were analyzed (54.9% non-CALD, 16.5% CALD-PLE, 18.5% CALD-PLNE). Overall, 7.4% of patients were enrolled in a trial. Trial participation was significantly lower in CALD patients than non-CALD patients (5.7% vs 8.4%; odds ratio [OR] = 0.80; 95% confidence interval [CI], 0.69–0.91; P = 0.001). CALD-PLNE patients were less likely to participate in trials than non-CALD (OR = 0.45; 95% CI, 0.36–0.56; P
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- 2017
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46. The unmet supportive care needs of Chinese patients and caregivers affected by cancer: A systematic review
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Afaf Girgis, Allan Ben Smith, and Verena S. Wu
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medicine.medical_specialty ,China ,Adolescent ,Scopus ,Information needs ,CINAHL ,PsycINFO ,Anxiety ,Unmet needs ,03 medical and health sciences ,0302 clinical medicine ,Neoplasms ,Medicine ,Humans ,Health Services Needs and Demand ,business.industry ,Cancer ,Social Support ,medicine.disease ,Oncology ,Caregivers ,030220 oncology & carcinogenesis ,Family medicine ,medicine.symptom ,business ,Psychosocial - Abstract
Introduction Cancer patients and caregivers have myriad unmet needs which can have detrimental consequences on their psychosocial wellbeing. This systematic review aims to identify the unmet supportive care needs of immigrant and native Chinese cancer patients and caregivers. Methods We systematically searched various electronic databases (e.g. Scopus, CINAHL, PsycInfo, etc.) from the earliest date available until January 2018. Additional studies were identified through reference lists and citation tracking. Eligibility criteria included: (a) qualitative, quantitative and/or mixed methods studies published in English; (b) immigrant and native Chinese cancer patients and/or caregivers (age ≥18 years); (c) unmet needs and/or their correlates. Studies were assessed for their risk of bias, and a narrative synthesis of findings was performed. Results Forty-seven papers from 45 studies met eligibility criteria. The most prevalent area of unmet needs was health system and information. Patients most commonly desired one member of the hospital to talk to about all aspects of their care. Caregivers preferred information about the patient's prognosis and likely outcome. Anxiety was most commonly associated with higher levels of health system and information needs. Conclusion Chinese patients and caregivers experience a range of unmet health system and information needs, which differ depending on their stage along the cancer trajectory.
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- 2019
47. Multiple health literacy dimensions are associated with physicians' efforts to achieve shared decision-making
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Anne-Déborah Bouhnik, Marie-Anne Durand, Allan ʻBen’ Smith, Youssoufa M. Ousseine, Julien Mancini, 'Cancer, Biomedicine & Society' group (SESSTIM - U1252 INSERM - AMU - UMR 259 IRD), Sciences Economiques et Sociales de la Santé & Traitement de l'Information Médicale (SESSTIM - U1252 INSERM - Aix Marseille Univ - UMR 259 IRD), Institut de Recherche pour le Développement (IRD)-Aix Marseille Université (AMU)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Institut de Recherche pour le Développement (IRD)-Aix Marseille Université (AMU)-Institut National de la Santé et de la Recherche Médicale (INSERM), The Dartmouth Institute for Health Policy [Hanover, NH, USA] (Clinical Practice), Dartmouth College [Hanover], Centre for Oncology Education and Research Translation [Liverpool, NSW, Australia] (CONCERT), University of New South Wales [Sydney] (UNSW)-Ingham Institute for Applied Medical Research [Liverpool, NSW, Australia]-South Western Sydney Clinical School [Liverpool, NSW, Australia], and Dupuis, Christine
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Adult ,Male ,Psychometrics ,Health literacy ,[SDV.CAN]Life Sciences [q-bio]/Cancer ,Computer-assisted web interviewing ,03 medical and health sciences ,0302 clinical medicine ,[SDV.CAN] Life Sciences [q-bio]/Cancer ,Numeracy ,Surveys and Questionnaires ,Health care ,Humans ,CollaboRATE ,030212 general & internal medicine ,Association (psychology) ,Shared decision-making ,Aged ,Aged, 80 and over ,Medical education ,Physician-Patient Relations ,business.industry ,030503 health policy & services ,General Medicine ,Middle Aged ,3. Good health ,Measurement scales ,Cross-Sectional Studies ,Validation studies ,[SDV.SPEE] Life Sciences [q-bio]/Santé publique et épidémiologie ,Female ,[SDV.SPEE]Life Sciences [q-bio]/Santé publique et épidémiologie ,Health information ,France ,0305 other medical science ,business ,Psychology ,Decision Making, Shared - Abstract
International audience; Objectives: Shared decision-making (SDM) in health care is widely encouraged. However, for SDM to occur patients need to be able to obtain, understand and apply medical information. Our aim was to assess the relationship between health literacy (HL), numeracy and SDM (using French translations of validated measures). Methods: A cross-sectional survey using a self-administered online questionnaire was proposed to all members of the Seintinelles association. Several scales were used to measure HL (FCCHL and 3HLQ/SILS), numeracy (SNS-3), the SDM process (CollaboRATE) and explore their interrelationships. Results: Data from 2 299 respondents (96.7% women, 46.1% with a history of cancer) were analysed. All measurement scales showed adequate psychometric properties. Functional HL, communicative HL and numeracy were positively associated with SDM while no significant relation was observed between critical HL and SDM. Furthermore, perceived difficulties in asking physicians' questions and deprivation were negatively associated with SDM. Conclusion: Patient support to reach SDM requires high levels of HL, particularly in the functional and communicative domains. Efforts must be made to improve access and understanding of health information. Practice implications: Brief self-reported measures could be used to screen for low levels of health literacy, tailor information accordingly and improve patient involvement in healthcare decision-making.
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- 2019
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48. Identifying the key characteristics of clinical fear of cancer recurrence: An international Delphi study
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Gozde Ozakinci, Gerald Michael Humphris, Phyllis Butow, Allan Ben Smith, Brittany Mutsaers, Christine Maheu, Louise Sharpe, Andreas Dinkel, Sophie Lebel, Judith B. Prins, Belinda Thewes, University of St Andrews. Sir James Mackenzie Institute for Early Diagnosis, University of St Andrews. Population and Behavioural Science Division, University of St Andrews. WHO Collaborating Centre for International Child & Adolescent Health Policy, University of St Andrews. Health Psychology, University of St Andrews. St Andrews Sustainability Institute, and University of St Andrews. School of Medicine
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Male ,Delphi Technique ,Expert consensus ,Delphi method ,fear of cancer recurrence ,Somatic symptom disorder ,Anxiety ,Delphi ,0302 clinical medicine ,Cancer Survivors ,Medicine ,030212 general & internal medicine ,Medical diagnosis ,media_common ,Cancer ,expert consensus ,Fear ,Middle Aged ,Women's cancers Radboud Institute for Health Sciences [Radboudumc 17] ,Psychiatry and Mental health ,Oncology ,Phobic Disorders ,030220 oncology & carcinogenesis ,oncology ,Female ,medicine.symptom ,Worry ,RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry ,Clinical psychology ,Adult ,media_common.quotation_subject ,NDAS ,Illness anxiety disorder ,Experimental and Cognitive Psychology ,chemical and pharmacologic phenomena ,RC0254 ,03 medical and health sciences ,All institutes and research themes of the Radboud University Medical Center ,SDG 3 - Good Health and Well-being ,Intervention (counseling) ,cancer ,definition ,Humans ,business.industry ,RC0254 Neoplasms. Tumors. Oncology (including Cancer) ,Definition ,Fear of cancer recurrrence ,Hypervigilance ,medicine.disease ,RC0321 ,Neoplasm Recurrence, Local ,business - Abstract
Objective: Without an agreed‐upon set of characteristics that differentiate clinical from non‐clinical levels of fear of cancer recurrence (FCR), it is difficult to ensure that FCR severity is appropriately measured, and that those in need of intervention are identified. The objective of this study was to establish expert consensus on the defining features of clinical FCR. Method: A three‐round Delphi was used to reach consensus on the defining features of clinical FCR. Sixty‐five experts in FCR (researchers, psychologists, physicians, nurses, allied health professionals) were recruited to suggest and rate potential features of clinical FCR. Participants who indicated they could communicate diagnoses within their clinical role were also asked to consider the application of established DSM‐5 and proposed ICD‐11 diagnostic criteria (Health Anxiety, Illness Anxiety Disorder, Somatic Symptom Disorder) to clinical FCR. Results: Participants’ ratings suggested that the following 4 features are key characteristics of clinical FCR: 1) high levels of preoccupation; 2) high levels of worry; 3) that are persistent; and 4) hypervigilance to bodily symptoms. Of participants whose professional role allowed them to diagnose mental disorders 84% indicated it would be helpful to diagnose clinical FCR, but the use of established diagnostic criteria related to health anxiety or somatic‐related disorders to clinical FCR was not supported. This suggests that participants consider clinical FCR as a presentation that is specific to cancer survivors. Conclusion: Clinical FCR was conceptualized as a multi‐dimensional construct. Further research is needed to empirically validate the proposed defining features. Postprint
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- 2019
49. Development and usability evaluation of an online self-management intervention for fear of cancer recurrence (iConquerFear)
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Britt Klein, Jane Turner, Jane Beith, Adeola Bamgboje-Ayodele, Allan Ben Smith, Joanna E. Fardell, Phyllis Butow, Afaf Girgis, Lisa Beatty, Louise Sharpe, Alison Pearce, and Belinda Thewes
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Male ,Psychological intervention ,Psycho-oncology ,Experimental and Cognitive Psychology ,Breast Neoplasms ,03 medical and health sciences ,0302 clinical medicine ,Nursing ,Cancer Survivors ,eHealth ,Humans ,030212 general & internal medicine ,Self-management ,business.industry ,End user ,Self-Management ,Usability ,Middle Aged ,Focus group ,Psychiatry and Mental health ,Outcome and Process Assessment, Health Care ,Oncology ,Phobic Disorders ,030220 oncology & carcinogenesis ,Female ,Thematic analysis ,Neoplasm Recurrence, Local ,Psychology ,business ,Internet-Based Intervention - Abstract
To develop and evaluate the usability of iConquerFear, an online self-management adaptation of an efficacious face-to-face therapist-delivered treatment for fear of cancer recurrence (FCR). iConquerFear development was theory based and person based. Development was guided by Ritterband et al's behaviour change model for internet interventions. iConquerFear end users (cancer survivors) provided iterative feedback in accordance with Yardley et al's person-based approach to maximise engagement and usability. Online focus groups and cognitive interviews were conducted to evaluate the usability of iConquerFear. Discussions were recorded, transcribed verbatim, and thematically analysed. Five online FCR modules were developed. Twenty-three cancer survivors (47% of those eligible) participated; 11/23 (58%) were breast cancer survivors, and average age was 53 years (SD = 10.8). Thematic saturation was reached after six focus groups (n = 16) and seven individual think-aloud interviews. Thematic analysis produced five overarching themes: easy navigation essential; satisfaction and engagement with content; flexible access is key; normalising and empowering; and a useful first step. Online self-management interventions like iConquerFear have the potential to address the unmet supportive care needs reported by burgeoning numbers of cancer survivors. However, that potential may not be realised unless interventions are rigorously developed and user tested, as benefits are constrained by limited engagement. Themes from the usability testing of iConquerFear highlight the importance of developing flexible, tailored, interactive, and contextual online self-management interventions for people with cancer.
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- 2019
50. PD63-08 LOCALISED PROSTATE CANCER COMBINED CLINIC: A PROSPECTIVE MIXED METHODS PILOT STUDY OF MEN WITH LOCALISED PROSTATE CANCER CHOOSING BETWEEN ROBOTIC PROSTATECTOMY AND RADIOTHERAPY TREATMENT
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Allan Ben Smith, Karen Wong, Dion Forstner, Orlando Rincones, Leslie Bokey, Mark Sidhom, Megan Berry, Afaf Girgis, Pascal Mancuso, and Sunny Nalavenkata
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Oncology ,medicine.medical_specialty ,Prostate cancer ,business.industry ,Urology ,Internal medicine ,Medicine ,lipids (amino acids, peptides, and proteins) ,Radiotherapy treatment ,business ,Robotic prostatectomy ,medicine.disease - Abstract
INTRODUCTION AND OBJECTIVES:To understand the decision making process in men diagnosed with localised prostate cancer (LPC) who are attending a combined clinic (CC), deciding between robotic prosta...
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- 2019
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