Search

Background: Patient-reported outcome and experience measures (PROMs and PREMs, respectively) are evidence-based, standardized questionnaires that can be used to capture patients' perspectives of their health and health care. While substantial investments have been made in the implementation of PROMs and PREMs, their use remains fragmented and limited in many settings. Analysis of multi-level barriers and enablers to the implementation of PROMs and PREMs has been hampered by the lack of use of state-of-the-art implementation science frameworks. This umbrella review aims to consolidate available evidence from existing quantitative, qualitative, and mixed-methods systematic and scoping reviews covering factors that influence the implementation of PROMs and PREMs in healthcare settings. Methods: An umbrella review of systematic and scoping reviews will be conducted following the guidelines of the Joanna Briggs Institute (JBI). Qualitative, quantitative, and mixed methods reviews of studies focusing on the implementation of PROMs and/or PREMs in all healthcare settings will be considered for inclusion. Eight bibliographical databases will be searched. All review steps will be conducted by two reviewers independently. Included reviews will be appraised and data will be extracted in four steps: (1) assessing the methodological quality of reviews using the JBI Critical Appraisal Checklist; (2) extracting data from included reviews; (3) theory-based coding of barriers and enablers using the Consolidated Framework for Implementation Research (CFIR) 2.0; and (4) identifying the barriers and enablers best supported by reviews using the Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach. Findings will be presented in diagrammatic and tabular forms in a manner that aligns with the objective and scope of this umbrella review, along with a narrative summary. Discussion: This umbrella review of quantitative, qualitative, and mixed-methods systematic and scoping reviews will inform policymakers, researchers, managers, and clinicians regarding which factors hamper or enable the adoption and sustained use of PROMs and PREMs in healthcare settings, and the level of confidence in the evidence supporting these factors. Findings will orient the selection and adaptation of implementation strategies tailored to the factors identified. Systematic review registration: PROSPERO CRD42023421845. [ABSTRACT FROM AUTHOR]

An individualised treatment rule (ITR) is a decision rule that aims to improve individuals' health outcomes by recommending treatments according to subject-specific information. In observational studies, collected data may contain many variables that are irrelevant to treatment decisions. Including all variables in an ITR could yield low efficiency and a complicated treatment rule that is difficult to implement. Thus, selecting variables to improve the treatment rule is crucial. We propose a doubly robust variable selection method for ITRs, and show that it compares favourably with competing approaches. We illustrate the proposed method on data from an adaptive, web-based stress management tool. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic has required family physicians to rapidly address increasing mental health problems with limited resources. Vulnerable home-based seniors with chronic physical conditions and commonly undermanaged symptoms of anxiety and depression were recruited in this pilot study to compare two brief self-care intervention strategies for the management of symptoms of depression and/or anxiety. Methods: We conducted a pilot RCT to compare two tele-health strategies to address mental health symptoms either with 1) validated CBT self-care tools plus up to three telephone calls from a trained lay coach vs. 2) the CBT self-guided tools alone. The interventions were abbreviated from those previously trialed by our team, to enable their completion in 2 months. Objectives were to assess the feasibility of delivering the interventions during a pandemic (recruitment and retention); and assess the comparative acceptability of the interventions across the two groups (satisfaction and tool use); and estimate preliminary comparative effectiveness of the interventions on severity of depression and anxiety symptoms. Because we were interested in whether the interventions were acceptable to a wide range of older adults, no mental health screening for eligibility was performed. Results: 90 eligible patients were randomized. 93% of study completers consulted the self-care tools and 84% of those in the coached arm received at least some coaching support. Satisfaction scores were high among participants in both groups. No difference in depression and anxiety outcomes between the coached and non-coached participants was observed, but coaching was found to have a significant effect on participants' use and perceived helpfulness of the tools. Conclusion: Both interventions were feasible and acceptable to patients. Trained lay coaching increased patients' engagement with the tools. Self-care tools offer a low cost and acceptable remote activity that can be targeted to those with immediate needs. While effectiveness results were inconclusive, this may be due to the lack of eligibility screening for mental health symptoms, abbreviated toolkit, and fewer coaching sessions than those used in our previous effective interventions. Trial registration: ClinicalTrials.gov Identifier: NCT0460937. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

In the management of most chronic conditions characterized by the lack of universally effective treatments, adaptive treatment strategies (ATSs) have grown in popularity as they offer a more individualized approach. As a result, sequential multiple assignment randomized trials (SMARTs) have gained attention as the most suitable clinical trial design to formalize the study of these strategies. While the number of SMARTs has increased in recent years, sample size and design considerations have generally been carried out in frequentist settings. However, standard frequentist formulae require assumptions on interim response rates and variance components. Misspecifying these can lead to incorrect sample size calculations and correspondingly inadequate levels of power. The Bayesian framework offers a straightforward path to alleviate some of these concerns. In this paper, we provide calculations in a Bayesian setting to allow more realistic and robust estimates that account for uncertainty in inputs through the 'two priors' approach. Additionally, compared to the standard frequentist formulae, this methodology allows us to rely on fewer assumptions, integrate pre‐trial knowledge, and switch the focus from the standardized effect size to the MDD. The proposed methodology is evaluated in a thorough simulation study and is implemented to estimate the sample size for a full‐scale SMART of an internet‐based adaptive stress management intervention on cardiovascular disease patients using data from its pilot study conducted in two Canadian provinces. [ABSTRACT FROM AUTHOR]

This study evaluated the quality and usefulness of interactive mobile health (mHealth) applications (apps) for adults with cancer. The PRISMA guidelines were followed to add rigor to the search, as well as to the data collection and analysis. The apps available in the most used app stores (Google Play and Apple) with interactive tailored features were identified. To supplement this, a Google web search was also conducted. The apps were evaluated for their quality using the validated Mobile App Rating Scale (MARS) and for their usefulness using a checklist of end users' desired features derived from the literature. The searches returned 3046 apps and 17 were retained for evaluation. The average quality score of the apps across the sample was 3.62/5 (SD 0.26, range: 3.14–4.06), with Outcomes4me scoring the highest. On average, the apps scored 50% (SD 2.5, range: 31–88%) on the usefulness checklist, with Cancer.net scoring the highest. The lowest-scoring categories were communications features on the usefulness checklist and "information" on the MARS, indicating areas for future work. The findings identified the apps of an acceptable quality and usefulness that could be recommended to those with cancer. [ABSTRACT FROM AUTHOR]

Purpose: An identification card facilitates access to municipal services for migrants with precarious status (MPS) in Montreal. The purpose of this study was to explore from MPS' perspective the utility of the identity (ID) card and its influence on social inclusion for MPS. Design/methodology/approach: A sequential explanatory mixed methods design was used. First, a descriptive phone survey was administered (n = 119). Associations between ID card use and levels of social inclusion were assessed using ordinal logistic regression. Second, semi-structured interviews (n = 12) were done with purposely selected participants. Results were mixed using a statistics-by-theme approach. Findings: Results showed that ID card users compared to nonusers reported higher levels of participation in society and more control/independence in daily life. No statistical associations were found between card use and sense of belonging nor sense of safety. Interviews highlighted that the ID card enabled participation in socio-recreational activities and perceived empowerment. A heightened sense of belonging was also found. Interview participants expressed fear of police despite owning the ID card. Practical implications: Overall, although the municipal ID card promoted social inclusion for MPS, there is a need to render the ID card official to fully achieve this goal. Findings can inform the creation of public policies that foster inclusion and health of MPS in cities around the world. Originality/value: Evaluation from MPS' perspectives of the first ID card program of its kind in Canada. [ABSTRACT FROM AUTHOR]

Objective. (1) Examine QoL of caregivers of patients with brain tumours compared to population norms and other cancer caregiver groups, (2) appraise the content of quantitative QoL outcome measures utilised, and (3) assess to what extent QoL measures used in research align with caregivers' priorities. Methods. Systematic literature search of studies including caregivers of brain tumour patients using self-completed assessments of QoL. Extracted data from included studies included quantitative QoL outcome data, QoL outcome measures utilised, and the included QoL domains. The impact of brain tumour patient caregiving was assessed by summarising included data comparing brain tumour caregivers to other cancer caregivers and normative population data. QoL measures utilised by the studies and their domains were extracted, coded, and analysed by themes. The rates of investigation by theme were then compared to existing data on caregiver-own preference in relation to QoL. Results. 49 studies, including 57 outcome measures, incorporating a combined 124 QoL domains. Brain tumour caregivers reported lower QoL outcomes than population norms but similar to other cancer caregiver groups. Thematic analysis of QoL domains generated 7 themes: caregiving burden and adaptation, existential and self, family and social support, finances, information needs, physical symptoms and functioning, and psychological symptoms and wellbeing. The most investigated themes were physical and psychological symptoms, the most important for caregivers themselves were family and social support. Conclusions. Caregiving for brain tumour patients is shown to negatively affect QoL, particularly mental health, burden, and social life. Existing QoL research in caregivers of brain tumour patients predominantly utilises generic QoL measures designed for use in patients and draws a medicalised view of QoL priorities. The few studies using caregiver-specific QoL measures demonstrated closer alignment to caregiver preferences such as family and social support. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study was to evaluate the quality, readability, suitability, and usefulness of resources publicly available to adult cancer survivors (aged 18 +) who have completed primary treatment. Methods: Resources were identified in July 2021 through Google. Search completeness was verified using Yahoo, Bing, and MedlinePlus. Retrieved resources were assessed for quality using the DISCERN, readability, suitability using the Suitability Assessment Measure (SAM), and usefulness based on a list of unmet needs and self-management skills derived from the literature. Descriptive analyses were conducted, and a cluster analysis identified the highest-scoring resources. Results: Forty-five resources were included. The mean DISCERN score was fair at 63.3% (SD 13.7%) with low-rated items being sources, publication date, and risks and mechanisms of treatment. The mean reading grade level was 11.19 (SD 1.61, range 8–16) with only one resource scoring an 8. The mean SAM score was in the adequate range at 48.2% (SD 10.6%), with graphics being the lowest-rated section. On average, included resources addressed 57.7% (SD 27.3%) of the unmet needs and 48.4% (SD 20.9%) of the self-management skills, the least addressed being problem-solving. Conclusion: Quality and suitability were fair, whereas readability exceeded recommended levels. Only one resource had a superior score in both quality and suitability. Implications for Cancer Survivors: The most pressing need is to develop resources for cancer survivors that address their unmet needs and are accessible in terms of literacy. Study findings outline the highest-scoring resources currently available to survivors, families, and clinicians. [ABSTRACT FROM AUTHOR]

Purpose: This international study aimed to compare healthcare professionals’ perspectives on the unmet needs of their cancer patients with those of family caregivers and to investigate the degree to which patients’ age group moderates the associations. Methods: Healthcare professionals involved in the care for cancer patients and their family caregivers were invited to participate in the International Psycho-Oncology Society (IPOS) Survivorship Online Survey. A total of 397 healthcare professionals from 34 countries provided valid study data. The participants evaluated whether the unmet need was the same for all age groups of patients and the degree of their patients’ needs not being met per patients’ age group. They evaluated the same questions for family caregivers. Results: Patients’ unmet needs in medical care were evaluated as greater than those of caregivers across all age groups. On the other hand, pediatric patients’ unmet needs for spiritual concerns, sexuality/intimacy, and insomnia/fatigue were evaluated as greater than those of caregivers, whereas adolescent and young adult patients’ unmet needs for symptom management were greater than those of caregivers. Patients’ other unmet needs were evaluated as comparable with those of caregivers regardless of age groups. Conclusion: The findings provide insights how best healthcare providers stratify resources to address the unmet needs of patients and caregivers by the patients’ age. Development of systematic assessment of unmet needs and provision of interventions tailored for patients’ lifespan to address the unmet needs of cancer patients, and caregivers are warranted. [ABSTRACT FROM AUTHOR]

Background: Psychometrically sound measures of chronic disease self-management tasks are needed to improve identification of patient needs and to tailor self-management programs. This study aimed to develop and conduct a preliminary psychometric analysis of the CanSMART questionnaire among a diverse, multimorbid Canadian population. Methods: The data were drawn from a cross-sectional online survey to examine self-management needs and support preferences. Participants were 306 Canadian adults with one or more physical and/or emotional chronic conditions. The questionnaire on frequency of self-management tasks was developed with substantial patient partner input. We conducted Exploratory Factor Analysis (EFA) and Confirmatory Factor Analysis (CFA) of the 11 self-management tasks comprising the scale in two randomly selected subsamples, followed by Rasch analysis. Associations between patient characteristics and the self-management task subscales and individual items were explored. Results: The factor analyses identified two self-management task subscales that were labelled Coping tasks (6 items) and Physical tasks (3 items), with Cronbach's alpha of 0.70 and 0.67, respectively. Rasch analysis suggested that participants had difficulty discriminating between response options "mostly" and "always". In analyses of independent associations with patient characteristics, both Coping and Physical tasks were associated with reporting more than one chronic disease and employment disability. The Coping tasks subscale was associated with female sex. Two items, on medication use and monitoring biological parameters, did not load on either scale. Both were associated with specific diagnoses. Conclusions: In this preliminary analysis, two self-management tasks subscales exhibit good psychometric properties. Two items that did not load on either scale may represent additional dimensions of self-management. This work provides the basis for further scale development and use in research and clinical practice. [ABSTRACT FROM AUTHOR]

Background: The Identification of Seniors at Risk (ISAR) screening tool is a widely-used risk stratification tool for older adults in the emergency department (ED). Few studies have investigated the use of ISAR to predict outcomes of hospitalized patients. To improve usability a revised version of ISAR (ISAR-R), was developed in a quality improvement project. The ISAR-R is also widely used, although never formally validated. To address these two gaps in knowledge, we aimed to assess the ability of the ISAR-R to predict readmission in a cohort of older adults who were hospitalized (admitted from the ED) and discharged home.Methods: This was a secondary analysis of data collected in a pre-post evaluation of a patient discharge education tool. Participants were patients aged 65 and older, admitted to hospital via the ED of two general community hospitals, and discharged home from the medical and geriatric units of these hospitals. Patients (or family caregivers for patients with mental or physical impairment) were recruited during their admission. The ISAR-R was administered as part of a short in-hospital interview. Providers were blinded to ISAR-R scores. Among patients discharged home, 90-day readmissions were extracted from hospital administrative data. The primary metrics of interest were sensitivity and negative predictive value. The Area Under the Curve (AUC) was also computed as an overall measure of performance.Results: Of 711 attempted recruitments, 496 accepted, and ISAR-R was completed for 485. Of these 386 patients were discharged home with a complete ISAR-R, the 90-day readmission rate was 24.9%; the AUC was 0.63 (95% CI 0.57,0.69). Sensitivity and negative predictive value at the recommended cut-point of 2 + were 81% and 87%, respectively. Specificity was low (40%).Conclusions: The ISAR-R tool is a potentially useful risk stratification tool to predict patients at increased risk of readmission. Its high values of sensitivity and negative predictive value at a cut-point of 2 + make it suitable for rapid screening of patients to identify those suitable for assessment by a clinical geriatric team, who can identify those with geriatric problems requiring further treatment, education, and follow-up to reduce the risk of readmission. [ABSTRACT FROM AUTHOR]

Background: Detecting anxiety in oncology patients is important, requiring valid yet brief measures. One increasingly popular approach is the Patient Reported Outcomes Measurement Information System (PROMIS); however, its validity is not well established in oncology. We assessed the convergent and criterion validity of PROMIS anxiety measures in an oncology sample. Methods: 132 oncology/haematology outpatients completed the PROMIS Anxiety Computer Adaptive Test (PROMIS-A-CAT) and the 7 item (original) PROMIS Anxiety Short Form (PROMIS-A-SF) along with six well-established measures: Hospital Anxiety and Depression Scale-Anxiety (HADS-A); Generalised Anxiety Disorder-7 (GAD-7); Depression, Anxiety and Stress Scale-Anxiety (DASS-A) and Stress (DASS-S); Distress Thermometer (DT) and PSYCH-6. Correlations, area under the curve (AUC) and diagnostic accuracy statistics were calculated with Structured Clinical Interview as the reference standard. Results: Both PROMIS measures correlated with all legacy measures at p <.001 (Rho =.56–.83). AUCs (>.80) were good for both PROMIS measures and comparable to or better than all legacy measures. At the recommended mild cut-point (55), PROMIS-A-SF had sensitivity (.67) comparable to or better than all the legacy measures, whereas PROMIS-A-CAT sensitivity (.59) was lower than GAD-7 (.67) and HADS-A (.62), but comparable to PSYCH-6 and higher than DASS-A, DASS-S and DT. Sensitivity for both was.79. A reduced cut-point of 51 on both PROMIS measures improved sensitivity (.83–.84) although specificity was only adequate (.61–.62). Conclusions: The convergent and criterion validity of the PROMIS anxiety measures in cancer populations was confirmed as equivalent, but not superior to, established measures (GAD-7 and HADS-A). The PROMIS-A-CAT did not demonstrate clear advantages over PROMIS-A-SF. [ABSTRACT FROM AUTHOR]

A range of anxiety measures is used in oncology but their comparability is unknown. We examined variations in measurement across three commonly used instruments: Hospital Anxiety and Depression-Anxiety subscale (HADS-A); Depression, Anxiety, Stress Scale - Anxiety subscale (DASS-A); and Generalised Anxiety Disorder scale (GAD-7). Participants (n = 164) completed the self-report measures and the Generalised Anxiety Disorder module of the Structured Clinical Interview for DSM-IV (SCID). We performed Rasch analysis and calculated diagnostic accuracy statistics. Instruments measured similar constructs of anxiety, but had different ranges of measurement, with the HADS-A including lower severity symptoms than the other two measures. Anxiety severity was similar for GAD-7 'mild' and HADS-A 'possible' categories, but 'mild' anxiety on the DASS-A represented more severe symptoms. Conversely, DASS-A 'severe' anxiety represented less intense symptoms than GAD-7 'severe' anxiety. Co-calibration indicated a score of eight on the HADS-A was equivalent in anxiety severity to scores of three on the DASS-A and six on the GAD-7. Area under the curve (AUC) was just acceptable for HADS-A and GAD-7 but not DASS-A. The HADS-A, DASS-A and GAD-7 displayed important differences in how they measured anxiety. In particular, categorical classifications of anxiety severity (mild/moderate/severe) were not equivalent across instruments. Thus, prevalence estimates of anxiety symptoms will vary as a consequence of the instrument used. The GAD-7 and HADS-A obtained more similar results and better AUC than the DASS-A. Our co-calibration could be used in future studies and meta-analyses of individual participant data to set cut-off points that provide more consistent classification of anxiety severity. [ABSTRACT FROM AUTHOR]

Background: Prostate cancer is the most common cancer diagnosis among men. Family caregivers (often female spouses) play a key role in ensuring patients' needs are met, frequently assuming their role with no formal training, which can contribute to a high burden. The purpose of this study was to pilot TEMPO—the first dyadic, Tailored, wEb-based, psychosocial and physical activity self-Management PrOgram for men with prostate cancer and their caregivers. Methods: 49 men with prostate cancer and their caregivers were randomized to TEMPO or usual care. Baseline and follow-up questionnaires were completed to assess feasibility, acceptability, and clinical significance. A priori benchmarks for these outcomes were set. Thirteen exit interviews were conducted to further explore acceptability. Results: Feasibility benchmarks were met with the exception for recruitment with on average 6.1 dyads recruited/month (benchmark: 8 dyads/month). Benchmarks of acceptability focused on attrition (<25%) and system usability, which were met. Using the strict criteria for adherence of 100% of the module viewed and participants spending at least 15 min on the module, 45% of participants were adherent. The clinical significance on anxiety and quality of life was supported for caregivers, and mostly supported for the men with prostate cancer. Conclusion: This pilot trial was successful, with minor modifications needed prior to a large trial. [ABSTRACT FROM AUTHOR]

Background: Chronic diseases are the leading cause of death worldwide. It is estimated that 20% of adults with chronic physical diseases experience concomitant depression, increasing their risk of morbidity and mortality. Low intensity psychosocial interventions, such as self-management, are part of recommended treatment; however, no systematic review has evaluated the effects of depression self-management interventions for this population. The primary objective was to examine the effect of self-management interventions on reducing depressive symptomatology in adults with chronic disease(s) and co-occurring depressive symptoms. Secondary objectives were to evaluate the effect of these interventions on improving other psychosocial and physiological outcomes (e.g., anxiety, glycemic control) and to assess potential differential effect based on key participant and intervention characteristics (e.g., chronic disease, provider). Methods: Studies comparing depression self-management interventions to a control group were identified through a) systematic searches of databases to June 2018 [MEDLINE (1946 -), EMBASE (1996 -), PsycINFO (1967 -), CINAHL (1984 -)] and b) secondary 'snowball' search strategies. The methodological quality of included studies was critically reviewed. Screening of all titles, abstracts, and full texts for eligibility was assessed independently by two authors. Data were extracted by one author and verified by a second. Results: Fifteen studies were retained: 12 for meta-analysis and three for descriptive review. In total, these trials included 2064 participants and most commonly evaluated interventions for people with cancer (n = 7) or diabetes (n = 4). From baseline to < 6-months (T1), the pooled mean effect size was − 0.47 [95% CI −0.73, − 0.21] as compared to control groups for the primary outcome of depression and − 0.53 [95% CI −0.91, − 0.15] at ≥ 6-months (T2). Results were also significant for anxiety (T1) and glycemic control (T2). Self-management skills of decision-making and taking action were significant moderators of depression at T1. Conclusion: Self-management interventions show promise in improving depression and anxiety in those with concomitant chronic physical disease. The findings may contribute to the development of future Self-management interventions and delivering evidence-based care to this population. Further high-quality RCTs are needed to identify sources of heterogeneity and investigate key intervention components. [ABSTRACT FROM AUTHOR]

Purpose: Opal is a new patient-centered mobile application that gives cancer patients access to their real time medical data in conjunction with disease- and treatment-specific patient education material. Few studies have focused on patients' experiences with such mobile applications. This study's objectives were to (1) explore cancer patients' perceptions of accessing the educational materials through Opal and (2) explore their experiences using these educational materials. Methods: A qualitative descriptive design was used. Patients were invited to participate in the study via Opal itself. Semi-structured individual interviews were done in person or over the phone, transcribed verbatim and analyzed using qualitative content analysis. Results: Nine women were interviewed. Three themes were identified as participants spoke about their perceptions of and experiences with Opal. First, Opal makes me feel like I have more control, conveying how learning more about their diagnosis and treatments allowed patients to advocate for themselves and plan their care. Second, Opal tends to reassure me, illustrating that having access to information was reassuring. Lastly, Opal is just starting to have information which could help meet my needs, reflecting patients' belief Opal is on the right track but could provide more of their medical record, treating team contact information and education material. Conclusion: Patients can feel more empowered when using patient-centered mobile applications, and mobile applications have potential for improving collaboration with healthcare professionals and care coordination. Healthcare professionals, including oncologists and nurses, should support patients' use of mobile applications and integrate them in their patient interactions. [ABSTRACT FROM AUTHOR]

Background: Prostate cancer predisposes patients and caregivers to a wide range of complex physical and psychosocial challenges, and interventions must incorporate a wide range of self-management strategies to help patients and their caregivers effectively cope with cancer challenges. To palliate this need, our team recently developed and evaluated the initial acceptability of a dyadic, Tailored, wEb-based, psychosocial, and physical activity self-Management PrOgram (TEMPO). TEMPO is a 10-week, interactive, web-based intervention consisting of five modules designed to help dyads manage their physical and psychosocial needs. It aims to teach dyads new self-management strategies and encourages them to increase their physical activity (PA) levels, mainly through walking and strength-based exercises. Initial acceptability evaluation of TEMPO revealed high user satisfaction, in addition to having a number of potential benefits for participants. After integrating suggested changes to TEMPO, the proposed pilot study aims to further test the acceptability and feasibility of TEMPO. Methods: This study is a multicenter, stratified, parallel, two-group, pilot randomized control trial (RCT), where patient–caregiver dyads are randomized (stratified by anxiety level) to receive (a) TEMPO or (b) usual care. Participants (n goal = 40) are recruited across Canada at participating cancer centers and through self-referral (e.g., online recruitment). Patient inclusion criteria are (a) having received prostate cancer treatment within the past 2 years or scheduled to receive treatment, (b) identified a primary caregiver willing to participate in the study, and (c) has access to the Internet. Eligible caregivers are those identified by the patient as his primary source of support. Dyads complete a baseline questionnaire (T1) and another one 3 months later (T2) assessing various aspects of physical and emotional functioning (e.g., the Medical Outcomes Study (MOS) 12-item Short Form Health Survey (SF-12), the Hospital Anxiety and Depression Scale (HADS), and the Perceived Stress Scale (PSS)), self-management behaviors (e.g., the Health Education Impact Questionnaire (heiQ)), physical activity (the International Physical Activity Questionnaires (IPAQ) and the Multidimensional Self-efficacy for Exercise Scale (MSES)), and dyadic coping (the Dyadic Coping Inventory (DCI)). Dyads that used TEMPO are also asked to participate in a semi-structured exit interview exploring their overall experience with the program. Discussion: This feasibility analysis will begin to develop the knowledge base on TEMPO's value for men with prostate cancer and their caregivers to inform a larger trial. Trial registration: NCT04304196 [ABSTRACT FROM AUTHOR]

Priorities for cancer caregiver intervention research: A three-round modified Delphi study to inform priorities for participants, interventions, outcomes, and study design characteristics Keywords: cancer; caregiver; carer; Delphi; experts EN cancer caregiver carer Delphi experts 2091 2096 6 01/07/21 20201201 NES 201201 Key Points A three-round modified Delphi study, guided by the PICO Framework, was conducted to ascertain cancer caregiver priorities in the areas of participants, interventions, outcomes, and study designs. A systematic review has shown these are appropriate and acceptable for caregivers,17 however, other studies suggest that interest in such interventions can vary.18 The need for sustainable interventions has been acknowledged in psycho-oncology.19-21 There are some cancer caregiver interventions that are implemented and in practice,22 and further research should consider sustainability during the early stages of intervention development. CONCLUSIONS Cancer caregiver intervention priorities include people who are from minority groups or are disadvantaged, those who are isolated and those identified as needing support; interventions that are sustainable and tailored; outcomes that are important to caregivers and assess the long-term impact of interventions. [Extracted from the article]

Informal caregivers are the primary source of support for cancer patients, providing assistance with household tasks, medical care and emotional support. These responsibilities often result in high levels of emotional, physical, social and financial burden for the caregiver. The aim of this study was to perform a scoping review exploring what is known regarding the financial costs experienced by caregivers and identify gaps in the literature. Seven databases were searched for articles published between May 2008 and May 2018 related to direct and indirect costs of informal cancer care. Included articles reported on the costs incurred by cancer caregivers as a dollar value, relied on caregiver‐reported costs and were peer reviewed. A total of 19 studies met the inclusion criteria. These studies reported out of pocket costs‚ opportunity costs of informal care time and caregiver time loss from paid employment. Care time was the largest source of cancer caregiver costs, averaging $4,809 per month when valued using the proxy good method or $2,877 per month when the opportunity cost approach was used. Caregiver costs were highest when the care recipient was in the palliative phase of the disease. There was an absence of literature reporting costs for cancer caregivers in low and middle income countries and none of the included studies considered costs related to the caregivers' medical expenditures. There were many challenges when comparing the costs across studies due to variations in the type of expenses reported and the methods used to value expenses. Quantifying the financial costs associated with being an informal caregiver can facilitate the communication of the financial burden caregivers experience, potentially spurring the development of policies and programs to reduce their financial burden and better support cancer caregivers. [ABSTRACT FROM AUTHOR]

Purpose: With an increased investment in psychosocial caregiving research, it becomes critical to establish the need for data of key stakeholders and future strategic directions. The purpose of this international Delphi study was to engage caregivers, clinicians, researchers, and managers to identify priority topics for caregiver research in cancer care.Methods: A three-round, online Delphi survey took place. In round 1, stakeholders generated caregiver research topics by answering an open-ended question. Content analysis of stakeholders' answers identified topics to be included in the round 2 survey to rate their importance. The round 3 survey included topics with less than 80% agreement for stakeholders to reconsider in light of other participants' responses.Results: In round 1, eighty-six topics were generated by 103 clinicians, 63 researchers, 61 caregivers, and 22 managers and grouped into 10 content areas: impact of cancer, support programs, vulnerable caregivers, technology, role in health care, caregiver-centered care, knowledge translation, environmental scan, financial cost of caregiving, and policy. Across rounds 2 and 3, nine topics achieved consensus for all stakeholder panels (e.g., home care interventions), with three of these emphasizing more research needed on the financial impact of informal caregiving (e.g., financial impact of "burnout" for caregivers and society). Of note, vulnerable caregivers and use of technology were content areas prioritized particularly by managers and researchers, but not caregivers.Conclusion: By establishing a confluence of perspectives around research priorities, this study ensures the interests of key stakeholders are integrated in strategic directions, increasing the likelihood of research capable of influencing practice, education, and policy. [ABSTRACT FROM AUTHOR]

Introduction Cancer is often considered a chronic disease, and most people with cancer have a caregiver, often a family member or friend who provides a significant amount of care during the illness trajectory. Caregivers are frequently in need of support, and a range of interventions have been trialled to improve outcomes. Consensus for optimal ways to support caregivers is not known. The aim of this protocol paper is to describe procedures for a modified Delphi study to explore expert consensus about important factors when developing caregiver interventions. Methods and analysis Online modified Delphi methodology will be used to establish consensus for important caregiver intervention factors incorporating the Patient problem, Intervention, Comparison and Outcome framework. Round 1 will comprise a free-text questionnaire and invite the panel to contribute factors they deem important in the development and evaluation of caregiver interventions. Round 2 is designed to determine preliminary consensus of the importance of factors generated in round 1. The panel will be asked to rate each factor using a 4-point Likert-type scale. The option for panellists to state reasoning for their rating will be provided. Descriptive statistics (median scores and IQR) will be calculated to determine each item's relative importance. Levels of consensus will be assessed based on a predefined consensus rating matrix. In round 3, factors will be recirculated including aggregate group responses (statistics and comment summaries) and panellists' own round 2 scores. Panellists will be invited to reconsider their judgements and resubmit ratings using the same rating system as in round 2. This will result in priority lists based on the panel's total rating scores. Ethics and dissemination Ethics for this study has been gained from the Deakin University Human Ethics Advisory Group. It is anticipated that the results will be published in peer-reviewed journals and presented in a variety of forums. [ABSTRACT FROM AUTHOR]

Objective: To describe fertility-related informational needs and practices, and to examine if demographic characteristics are related to these needs and practices.Methods: A needs assessment survey was conducted at three Canadian cancer centres.Results: 192 male cancer patients (Mage = 33.6) completed the survey. Most patients (70%) recalled having had a discussion with a health care provider regarding their fertility and 44% banked their sperm. Patients reported not getting all the information that they wanted, eg, the risk that a future child may have the same type of cancer (78%), and what was covered by insurance plans (71%). Barriers to sperm preservation were urgency to begin cancer treatment (49%), not planning to have a child in the future (47%) and worries that cancer could be passed on to future children (38%). Participants' age and being the parent of a child were significantly associated with having had a discussion about fertility. Participants' age, province, being the parent of a child and the desire for future children were significantly associated with fertility preservation.Conclusions: Discussions with health care providers were more frequent, and fertility preservation rates were higher than in past studies, but still not all patients' questions were answered. Misconceptions about passing on cancer to one's child, and that sperm preservation will delay treatment, should be dispelled. Health care providers can ask patients if they have any desire to have children in the future as a way to initiate a discussion of fertility preservation. Key information gaps and psychosocial resource needs are suggested to fully meet male cancer patients' fertility-related concerns. [ABSTRACT FROM AUTHOR]

Abstract: While burden in cancer caregivers is high and associated with poor outcomes, little is known about significance of specific supportive care needs’ domains in determining survivors’ or caregivers’ perceived caregiver burden. This cross‐sectional study explored which domains of survivor‐ and caregiver‐reported supportive care needs were most associated with survivor‐ and caregiver‐reported caregiver burden, in breast cancer survivor–caregiver dyads. Cancer survivors (N = 55) and their caregivers (N = 44) completed measures of supportive care needs, anxiety, depression, functional well‐being and perceived caregiver burden. Correlation and linear regression analyses were used to determine relative significance of survivor and caregiver supportive care needs in accounting for variance in survivor and caregiver perceptions of burden. Higher survivor‐perceived caregiver burden and higher caregiver‐perceived difficulty of caregiving were associated with higher levels of survivor and caregiver supportive care needs. Survivors’ psychological needs uniquely contributed to survivors’ self‐perceived burden, and survivors’ sexual needs and caregivers’ work and social needs uniquely contributed to caregivers’ perceived difficulty of caregiving. Caregiver's perceived time spent caregiving was associated with access to services needs but not other needs. Survivor and caregiver supportive care needs and burden appear interdependent. Longitudinal research with larger samples is warranted to examine these relationships. [ABSTRACT FROM AUTHOR]

Objective: Caregiver research has relied on composite measures (eg, count) of unmet supportive care needs to determine relationships with anxiety and depression. Such composite measures assume that all unmet needs have a similar impact on outcomes. The purpose of this study is to identify individual unmet needs most associated with caregivers' anxiety and depression.Methods: Two hundred nineteen caregivers completed the 44-item Supportive Care Needs Survey and the Hospital Anxiety and Depression Scale (minimal clinically important difference = 1.5) at 6 to 8 months and 1, 2, 3.5, and 5 years following the patients' cancer diagnosis. The list of needs was reduced using partial least square regression, and those with a variance importance in projection >1 were analyzed using Bayesian model averaging.Results: Across time, 8 items remained in the top 10 based on prevalence and were labelled "core." Three additional ones were labelled "frequent," as they remained in the top 10 from 1 year onwards. Bayesian model averaging identified a maximum of 3 significant unmet needs per time point-all leading to a difference greater than the minimal clinically important difference. For depression, none of the core unmet needs were significant, rather significance was noted for frequent needs and needs that were not prevalent. For anxiety, 3/8 core and 3/3 frequent unmet needs were significant.Conclusions: Those unmet needs that are most prevalent are not necessarily the most significant ones, and findings provide an evidence-based framework to guide the development of caregiver interventions. A broader contribution is proposing a different approach to identify significant unmet needs. [ABSTRACT FROM AUTHOR]

Purpose: To assess the convergent validity of the Patient-Reported Outcomes Measurement Information System (PROMIS) depression measures relative to legacy measures and criterion validity against a structured diagnostic interview for depression in an oncology sample.Methods: 132 oncology/haematology outpatients completed the PROMIS Depression Computer Adaptive Test (PROMIS-D-CAT) and PROMIS Depression Short Form (PROMIS-D-SF) along with seven legacy measures: Beck Depression Inventory (BDI); Centre for Epidemiological Studies Depression (CES-D); Depression, Anxiety and Stress Scale; Hospital Anxiety and Depression Scale; Patient Health Questionnaire; Distress Thermometer and PSYCH-6. Correlations, area under the curve (AUC) and diagnostic accuracy statistics were calculated with Structured Clinical Interview as the gold standard.Results: Both PROMIS measures correlated with all legacy measures at p < .001 (ρ = 0.589-0.810) and all AUCs (> 0.800) were comparable. At the cut-off points for mild depression of 53, the PROMIS measures had sensitivity (0.83 for PROMIS-D-CAT and 0.80 for PROMIS-D-SF) similar to or better than 6/7 legacy measures with high negative predictive value (> 90%). At cut-off points of 60 for moderate depression, PROMIS measures had specificity > 90%, similar to or better than all legacy measures and positive predictive value ≥ 0.50 (similar to 5/7 legacy measures).Conclusions: The convergent and criterion validity of the PROMIS depression measures in cancer populations was confirmed, although the optimal cut-off points are not established. PROMIS measures were briefer than BDI-II and CES-D but do not offer any advance in terms of diagnostic accuracy, reduced response burden or cost over other legacy measures of depression in oncology patients. [ABSTRACT FROM AUTHOR]

Background: With the burden of chronic illness increasing globally, self-management is a crucial strategy in reducing healthcare costs and increasing patient quality of life. Low income and low health literacy are both associated with poorer health outcomes and higher rates of chronic disease. Thus, self-management represents an important healthcare strategy for these populations. The purpose of this study is to review self-management interventions in populations with low income or low health literacy and synthesize the efficacy of these interventions.Methods: A systematic review of trials evaluating the efficacy of self-management interventions in populations with low income or low health literacy diagnosed with a chronic illness was conducted. Electronic databases were primarily searched to identify eligible studies. Data were extracted and efficacy summarized by self-management skills, outcomes, and content tailoring.Results: 23 studies were reviewed, with ten reporting an overall positive effect on at least one primary outcome. Effective interventions most often included problem-solving as well as taking action and/or resource utilization. A wide range of health-related outcomes were considered, were efficacious empowerment and disease-specific quality of life were found to be significant. The efficacy of interventions did not seem to vary by duration, format, or mode of delivery or whether these included individuals with low health literacy and/or low income. Tailoring did not seem to impact on efficacy.Discussion: Findings suggest that self-management interventions in populations with low income or low health literacy are most effective when three to four self-management skills are utilized, particularly when problem-solving is targeted. Healthcare providers and researchers can use these findings to develop education strategies and tools for populations with low income or low health literacy to improve chronic illness self-management. [ABSTRACT FROM AUTHOR]

Objectives A high proportion of care stemming from chronic disease or disability in low-income and middle-income countries is provided by informal caregivers. The goal of this study was to determine the level of burden experienced by these caregivers, explore associated factors and assess whether caregivers' and non-caregivers' health differed. Participants Caregivers in Ghana (n=143), India (n=490) and Russia (n=270) completed the measures. Outcome measures Factors associated (ie, demographics and caregiving profile variables) with burden were explored among caregivers. Then, quality of life (QOL), perceived stress, depression, self-rated health (SRH) and health risk factors were compared between caregivers and matched noncaregivers (1:2). Results The largest caregiving subgroups were spouses and adult children. Caregivers mostly cared for one person and provided financial, social/emotional and/or physical support, but received little support themselves. Burden level ranged from 17.37 to 20.03. Variables associated with burden were mostly country-specific; however, some commonality for wealth, type of care and caregiving duration was noted. Caregivers with a moderate or high level of burden reported lower QOL and higher perceived stress than those experiencing low burden. Caregivers reported lower QOL and SRH than non-caregivers. Conclusion Given the lack of support received and consequences of the burden endured by caregivers, policy and programme initiatives are needed to ensure that caregivers in low- and middle-income countries can fulfil their role without compromising their own health. [ABSTRACT FROM AUTHOR]

Background: Sample selection can substantially affect the solutions generated using exploratory factor analysis. Validation studies of the 12-item World Health Organization (WHO) Disability Assessment Schedule 2.0 (WHODAS 2.0) have generally involved samples in which substantial proportions of people had no, or minimal, disability. With the WHODAS 2.0 oriented towards measuring disability across six life domains (cognition, mobility, self-care, getting along, life activities, and participation in society), performing factor analysis with samples of people with disability may be more appropriate. We determined the influence of the sampling strategy on (a) the number of factors extracted and (b) the factor structure of the WHODAS 2.0.Methods: Using data from adults aged 50+ from the six countries in Wave 1 of the WHO's longitudinal Study on global AGEing and adult health (SAGE), we repeatedly selected samples (n = 750) using two strategies: (1) simple random sampling that reproduced nationally representative distributions of WHODAS 2.0 summary scores for each country (i.e., positively skewed distributions with many zero scores indicating the absence of disability), and (2) stratified random sampling with weights designed to obtain approximately symmetric distributions of summary scores for each country (i.e. predominantly including people with varying degrees of disability).Results: Samples with skewed distributions typically produced one-factor solutions, except for the two countries with the lowest percentages of zero scores, in which the majority of samples produced two factors. Samples with approximately symmetric distributions, generally produced two- or three-factor solutions. In the two-factor solutions, the getting along domain items loaded on one factor (commonly with a cognition domain item), with remaining items loading on a second factor. In the three-factor solutions, the getting along and self-care domain items loaded separately on two factors and three other domains (mobility, life activities, and participation in society) on the third factor; the cognition domain items did not load together on any factor.Conclusions: High percentages of participants with no disability (i.e., zero scores) produce heavily censored data (i.e., floor effects), limiting data heterogeneity and reducing the numbers of factors retained. The WHODAS 2.0 appears to have multiple closely-related factors. Samples of convenience and those collected for other purposes (e.g., general population surveys) would usually be inadequate for validating measures using exploratory factor analysis. [ABSTRACT FROM AUTHOR]

Objectives. In a sample of primary care participants with chronic physical conditions and comorbid depressive symptoms: to describe the cross-sectional and longitudinal associations of activation and self-efficacy with demographic, physical and mental health status, health behaviors, depression self-care, health care utilization, and use of self-care tools; and to examine the effects of a depression self-care coaching intervention on these two outcomes. Design/Study Setting. A secondary analysis of activation and self-efficacy data collected as part of a randomized trial to compare the effects of a telephone-based coached depression self-care intervention with a noncoached intervention. Activation (Patient Activation Measure) was measured at baseline and 6 months. Depression self-care self-efficacy was assessed at baseline, at 3 months, and at 6 months. Principal Findings. In multivariable cross-sectional analyses (n = 215), activation and/or self-efficacy were associated with language, birthplace, better physical and mental health, individual exercise, specialist visits, and antidepressant nonuse. In longitudinal analyses (n = 158), an increase in activation was associated with increased medication adherence; an increase in self-efficacy was associated with use of cognitive self-care strategies and increases in social and solitary activities. There were significant improvements from baseline to 6 months in activation and self-efficacy scores both among coached and noncoached groups. The self-care coaching intervention did not affect 6-month activation or self-efficacy but was associated with quicker improvement in self-efficacy. Conclusions. Overall, the results for activation and self-efficacy were similar, although self-efficacy correlated more consistently than activation with depression-specific behaviors and was responsive to a depression self-care coaching intervention. [ABSTRACT FROM AUTHOR]

Background: Caregiving can adversely impact individuals' psychosocial and physical well-being. An important task in health research is to find effective ways to enhance caregivers' health and functioning.Purpose: To provide a systematic review of the efficacy of physical activity (PA) interventions for caregivers on their and the care recipients' psychosocial outcomes, PA levels, and physical health.Methods: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist, a descriptive systematic review of studies examining the effects of PA interventions for caregivers on their outcomes and those of the care recipients was conducted. Studies were primarily identified through searching electronic databases.Results: Fourteen studies were reviewed. PA interventions significantly decreased caregivers' distress and increased their well-being, quality of life, sleep quality, PA levels, self-efficacy for caregiving or exercise, and readiness for exercise. Most PA interventions targeted the caregiver alone. Two studies examined the impact of the intervention on the care recipient and found no significant effect.Conclusions: PA interventions hold promise in improving caregivers' outcomes. However, more high quality trials are needed before definitive conclusions can be drawn. [ABSTRACT FROM AUTHOR]

Purpose: To examine the acceptability of the methods used to evaluate Coping-Together, one of the first self-directed coping skill intervention for couples facing cancer, and to collect preliminary efficacy data.Methods: Forty-two couples, randomized to a minimal ethical care (MEC) condition or to Coping-Together, completed a survey at baseline and 2 months after, a cost diary, and a process evaluation phone interview.Results: One hundred seventy patients were referred to the study. However, 57 couples did not meet all eligibility criteria, and 51 refused study participation. On average, two to three couples were randomized per month, and on average it took 26 days to enrol a couple in the study. Two couples withdrew from MEC, none from Coping-Together. Only 44 % of the cost diaries were completed, and 55 % of patients and 60 % of partners found the surveys too long, and this despite the follow-up survey being five pages shorter than the baseline one. Trends in favor of Coping-Together were noted for both patients and their partners.Conclusions: This study identified the challenges of conducting dyadic research, and a number of suggestions were put forward for future studies, including to question whether distress screening was necessary and what kind of control group might be more appropriate in future studies. [ABSTRACT FROM AUTHOR]

Objective: A diagnosis of cancer and subsequent treatment are distressing not only for the person directly affected, but also for their intimate partner. The aim of this review is to (a) identify the main theoretical frameworks underpinning research addressing dyadic coping among couples affected by cancer, (b) summarise the evidence supporting the concepts described in these theoretical frameworks, and (c) examine the similarities and differences between these theoretical perspectives. Methods: A literature search was undertaken to identify descriptive studies published between 1990 and 2013 (English and French) that examined the interdependence of patients' and partners' coping, and the impact of coping on psychosocial outcomes. Data were extracted using a standardised form and reviewed by three of the authors. Results: Twenty-three peer-reviewed manuscripts were identified, from which seven theoretical perspectives were derived: Relationship-Focused Coping, Transactional Model of Stress and Coping, Systemic-Transactional Model (STM) of dyadic coping, Collaborative Coping, Relationship Intimacy model, Communication models, and Coping Congruence. Although these theoretical perspectives emphasised different aspects of coping, a number of conceptual commonalities were noted. Conclusion: This review identified key theoretical frameworks of dyadic coping used in cancer. Evidence indicates that responses within the couple that inhibit open communication between partner and patient are likely to have an adverse impact on psychosocial outcomes. Models that incorporate the interdependence of emotional responses and coping behaviours within couples have an emerging evidence base in psycho-oncology and may have greatest validity and clinical utility in this setting. [ABSTRACT FROM AUTHOR]

Background: Although it is known both patients' and partners' reactions to a prostate cancer diagnosis include fear, uncertainty, anxiety and depression with patients' partners' reactions mutually determining how they cope with and adjust to the illness, few psychosocial interventions target couples. Those that are available tend to be led by highly trained professionals, limiting their accessibility and long-term sustainability. In addition, it is recognised that patients who might benefit from conventional face-to-face psychosocial interventions do not access these, either by preference or because of geographical or mobility barriers. Self-directed interventions can overcome some of these limitations and have been shown to contribute to patient well-being. This study will examine the feasibility of a self-directed, coping skills intervention for couples affected by cancer, called Coping-Together, and begin to explore its potential impact on couples' illness adjustment. The pilot version of Coping-Together includes a series of four booklets, a DVD, and a relaxation audio CD. Methods/design: In this double-blind, two-group, parallel, randomized controlled trial, 70 couples will be recruited within 4 months of a prostate cancer diagnosis through urology private practices and randomized to: 1) Coping-Together or 2) a minimal ethical care condition. Minimal ethical care condition couples will be mailed information booklets available at the Cancer Council New South Wales and a brochure for the Cancer Council Helpline. The primary outcome (anxiety) and additional secondary outcomes (distress, depression, dyadic adjustment, quality of life, illness or caregiving appraisal, self-efficacy, and dyadic and individual coping) will be assessed at baseline (before receiving study material) and 2 months post-baseline. Intention-to-treat and per protocol analysis will be conducted. Discussion: As partners' distress rates exceed not only population norms, but also those reported by patients themselves, it is imperative that coping skills interventions target the couple as a unit and enhance both partners' ability to overcome cancer challenges. This pilot study will examine the feasibility and potential efficacy of Coping-Together in optimising couples' illness adjustment. This is one of the first feasibility studies to test this innovative coping intervention, which in turn will contribute to the larger literature advocating for psychosocial care of couples affected by prostate cancer. Trial registration: Australian New Zealand Clinical Trials Registry ACTRN12611000438954 [ABSTRACT FROM AUTHOR]

Introduction: There is growing evidence that cancer affects couples as an interdependent system and that couple-based psychosocial interventions are efficacious in reducing distress and improving coping skills. However, adoption of a couples-focused approach into cancer care is limited. Previous research has shown that patients and partners hold differing views from health care professionals (HCPs) regarding their psychosocial needs, and HCPs from different disciplines also hold divergent views regarding couples’ psychosocial needs. This study aimed to explore the perspectives of HCPs and couples on the provision of couple-focused psychosocial care in routine cancer services. Methods: A qualitative study using semi-structured interviews was undertaken with 20 HCPs (medical oncologists, nurses, psycho-oncology professionals) and 20 couples where one member had been diagnosed with cancer (breast, prostate, head/neck, bowel, multiple myeloma). Interviews were analysed using the framework approach. Results: Three core themes were identified: “How Do Couples Cope with Cancer?” emphasised the positive and negative coping strategies used by couples, and highlighted that partners perceived a lack of engagement by HCPs. “What Is Couple-focused Psychosocial Care for People with Cancer?” described varying perspectives regarding the value of couple-focused psychosocial care and variation in the types of support couples need among HCPs and couples. Whereas most couples did not perceive a need for specialist couple-focused support and interventions, most HCPs felt couple-focused psychosocial care was necessary. “How Can Couple-Focused Psychosocial Care be Improved?” described couples’ view of a need for better provision of information, and the importance of their relationship with oncology clinicians. HCPs identified a lack of confidence in responding to the emotional needs of couples, and barriers to providing psychosocial care, including challenges identifying distress (through screening) and referring distressed individuals/couples for specialist assessment. Conclusions: The three core themes revealed discrepancies about couple-focused psychosocial care between HCPs and couples, and HCPs from different professional backgrounds, and several barriers to the provision of psychosocial care for couples. Despite HCPs and couples acknowledging that a couple-focused approach to psycho-social support was potentially beneficial, the majority of couples did not feel they needed specific couple-focused interventions. These issues and recommendations for future research are discussed. [ABSTRACT FROM AUTHOR]

Objective Recognition that patients and partners are both affected by a cancer diagnosis has led to increased interest in couple-based interventions. Although these interventions show promise for enhancing both patients' and partners' illness adjustment, couples' acceptance of these interventions is not well documented. This review explores these issues as reflected in uptake and attrition rates in published trials. Methods A literature search identified 17 manuscripts reporting the uptake and attrition rates of couple-based interventions for couples facing cancer. The uptake (percentage of eligible couples randomised into a trial) and the attrition (percentage of couples who dropped out of a trial) rates were extracted by cancer type, cancer stage, intervention type, intervention focus and intervention delivery method. Results Uptake and attrition rates ranged from 13.6% to 94.2% and 0% to 49.4%, respectively. Low uptake rates were noted for communication-focused interventions and those requiring both the patient and the partner to participate in the intervention simultaneously. Attrition was also high in the latter group. Uptake rates appeared slightly lower than individual-based interventions (58%-76%), as were attrition rates, although only for late stage cancer (~30% couple-based vs. ~69% individual-based). Common barriers to uptake included accessibility, competing priorities and illness severity. Conclusions The couple-based interventions had slightly lower uptake rates than what has been previously reported for individual-based interventions; however, lower attrition suggests patients and partners may be more inclined to complete an intervention when they participate together. The findings support the need to develop strategies to improve the delivery and acceptability of couple-based interventions in clinical practice. Copyright © 2013 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Purpose: This study aims to report on the acceptability of a self-directed coping skills intervention, called Coping-Together, for patients affected by cancer and their partners, including the strengths and limitations of the intervention design.Methods: This initial version of Coping-Together included a series of four booklets, which aimed to provide practical coping strategies for the day-to-day management of common physical and psychosocial challenges. Thirty semi-structured interviews were conducted with 27 patients and/or 14 partners. Interviews were audiorecorded, transcribed verbatim, and analyzed for content.Results: Participants endorsed the self-directed format, and the focus of Coping-Together on practical information was a feature that set it apart from other resources. The majority of participants interviewed felt that the proposed coping strategies were "doable"; however, only half of the participants reported learning new coping skills after reading the booklets. Additional benefits of reading the booklets were increasing awareness of challenges to prepare for, giving hope that something can help you "pull through", providing a sense of normality, connecting patients and partners to people and services, and complementing support received from health professionals. Despite the general acceptability of the intervention, some aspects of its design were criticized, including the workbook-like exercises, expectations about using the resource together, level of guidance provided, and amount of information included. In general, most participants felt that too much negative information was included, whereas more experiential information was desired.Conclusions: Preliminary evaluation of Coping-Together supported its practical approach and highlighted improvements to enhance its contribution to patient and partner coping. [ABSTRACT FROM AUTHOR]

Objective The objective of this study was to identify caregivers' unmet needs and the psychosocial variables associated with unmet need count within the first 24 months post-survivor diagnosis. Methods Caregivers completed a comprehensive survey measuring the primary outcome, psychosocial variables, and demographics of interest at 6 ( n = 547), 12 ( n = 519), and 24 ( n = 443) months post-survivor diagnosis. Results Although prevalence of unmet needs significantly decreased over time, almost a third of caregivers still reported unmet needs at 24 months. Unmet needs were more prevalent among caregivers of lung cancer survivors, at 6 and 24 months. Top ranking unmet needs across time included ' managing concerns about cancer coming back', ' reducing stress in the person with cancer's life', ' understanding the experience of the person with cancer', and ' accessible hospital parking'. At 24 months, some of the top ranking unmet needs were related to caregivers' well-being and relationships. Increased interference in activities due to caregiving, anxiety, depression, avoidant and active coping, and out-of-pocket expenses was associated with reporting more unmet needs. Less involvement in caregiving roles and increased physical well-being and social support were associated with reporting less unmet needs. For some variables (e.g. anxiety and depression), association with unmet needs strengthened over time. Conclusions This is the first longitudinal analysis of caregivers' unmet needs as they enter early and extended survivorship. Findings provide valuable insights into caregiver's unmet needs over time and identified a sub-group of caregivers at risk of experiencing unmet needs, extending previous research and informing the timing and content of psychosocial services. Copyright © 2012 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Introduction: Coping skills training interventions have been found to be efficacious in helping both patients and their partners manage the physical and emotional challenges they face following a cancer diagnosis. However, many of these interventions are costly and not sustainable. To overcome these issues, a self- directed format is increasingly used. The efficacy of self-directed interventions for patients has been supported; however, no study has reported on the outcomes for their partners. This study will test the efficacy of --a multimedia, self-directed, coping skills training intervention for patients with cancer and their partners. Methods and analysis: The proposed three-group, parallel, randomised controlled trial will recruit patients diagnosed in the past 4 months with breast, prostate, colorectal cancer or melanoma through their treating clinician. Patients and their partners will be randomised to (1) a minimal ethical care (MEC) condition--selected Cancer Council New South Wales booklets and a brochure for the Cancer Council Helpline, (2) Coping-Together generic--MEC materials, the six Coping-Together booklets and DVD, the Cancer Council Queensland relaxation audio CD and login to the Coping-Together website or (3) Coping-Together tailored--MEC materials, the Coping-Together DVD, the login to the website and only those Coping-Together booklet sections that pertain to their direct concerns. Anxiety (primary outcome), distress, depression, dyadic adjustment, quality of life, illness or caregiving appraisal, self-efficacy and dyadic and individual coping will be assessed before receiving the study material (ie, baseline) and again at 3, 6 and 12 months postbaseline. Intention-to-treat and per protocol analysis will be conducted. Ethics and dissemination: This study has been approved by the relevant local area health and University ethics committees. Study findings will be disseminated not only through peer-reviewed publications and conference presentations but also through educational outreach visits, publication of lay research summaries in consumer newsletters and publications targeting clinicians. Trial registration: Australian New Zealand Clinical Trials Registry ACTRN12613000491763 (03/05/2013) [ABSTRACT FROM AUTHOR]

Objectives The recognition that a partner or caregiver is typically the patient's primary support person and is also deeply affected by the cancer diagnosis has prompted efforts to document their unmet supportive care needs. This review aimed to: (1) quantify the prevalence of unmet needs reported by partners and caregivers, (2) categorise their unmet needs by domain and (3) identify the main variables associated with reporting more unmet needs. Methods Manuscripts were identified through systematically searching electronic databases, checking the reference lists of retrieved publications, online searching of key journals and contacting researchers in this field. Results Unmet need items across 29 manuscripts were clustered into six domains: comprehensive cancer care (prevalence 1.1%-96%), emotional and psychological (3%-93.2%), partner or caregiver impact and daily activities (2.8%-79%), relationship (3.7% and 58%), information (2.2%-86%) and spiritual (2%-43%). Studies of caregivers of palliative care or terminal patients often reported a higher prevalence of unmet needs than studies of caregivers of cancer survivors. Variables associated with higher unmet needs included being female, not being the spouse of the patient, having lower social support or reporting distress. Conclusions Despite the ability to classify unmet needs within broad domains, quantification of unmet needs was challenging. This was mainly due to the diversity in methods used across studies (eg, different measures, variability in conceptualisation of unmet needs, etc). Rigorous, context-specific, longitudinal studies that use validated measures are needed to benefit future intervention research. [ABSTRACT FROM AUTHOR]

Background: Although it is known both patients' and partners' reactions to a prostate cancer diagnosis include fear, uncertainty, anxiety and depression with patients' partners' reactions mutually determining how they cope with and adjust to the illness, few psychosocial interventions target couples. Those that are available tend to be led by highly trained professionals, limiting their accessibility and long-term sustainability. In addition, it is recognised that patients who might benefit from conventional face-to-face psychosocial interventions do not access these, either by preference or because of geographical or mobility barriers. Self-directed interventions can overcome some of these limitations and have been shown to contribute to patient well-being. This study will examine the feasibility of a self-directed, coping skills intervention for couples affected by cancer, called Coping-Together, and begin to explore its potential impact on couples' illness adjustment. The pilot version of Coping-Together includes a series of four booklets, a DVD, and a relaxation audio CD. Methods/design: In this double-blind, two-group, parallel, randomized controlled trial, 70 couples will be recruited within 4 months of a prostate cancer diagnosis through urology private practices and randomized to: 1) Coping-Together or 2) a minimal ethical care condition. Minimal ethical care condition couples will be mailed information booklets available at the Cancer Council New South Wales and a brochure for the Cancer Council Helpline. The primary outcome (anxiety) and additional secondary outcomes (distress, depression, dyadic adjustment, quality of life, illness or caregiving appraisal, self-efficacy, and dyadic and individual coping) will be assessed at baseline (before receiving study material) and 2 months post-baseline. Intention-to-treat and per protocol analysis will be conducted. Discussion: As partners' distress rates exceed not only population norms, but also those reported by patients themselves, it is imperative that coping skills interventions target the couple as a unit and enhance both partners' ability to overcome cancer challenges. This pilot study will examine the feasibility and potential efficacy of Coping-Together in optimising couples' illness adjustment. This is one of the first feasibility studies to test this innovative coping intervention, which in turn will contribute to the larger literature advocating for psychosocial care of couples affected by prostate cancer. [ABSTRACT FROM AUTHOR]

Background: The mini-Mental Adjustment to Cancer Scale (mini-MAC) is a well-recognised, popular measure of coping in psycho-oncology and assesses five cancer-specific coping strategies. It has been suggested that these five subscales could be grouped to form the over-arching adaptive and maladptive coping subscales to facilitate the interpretation and clinical application of the scale. Despite the popularity of the mini-MAC, few studies have examined its psychometric properties among long-term cancer survivors, and further validation of the mini-MAC is needed to substantiate its use with the growing population of survivors. Therefore, this study examined the psychometric properties and dimensionality of the mini-MAC in a sample of long-term cancer survivors using Rasch analysis. Methods: RUMM 2030 was used to analyse the mini-MAC data (n=851). Separate Rasch analyses were conducted for each of the original mini-MAC subscales as well as the over-arching adaptive and maladaptive coping subscales to examine summary and individual model fit statistics, person separation index (PSI), response format, local dependency, targeting, item bias (or differential item functioning -DIF), and dimensionality. Results: For the fighting spirit, fatalism, and helplessness-hopelessness subscales, a revised three-point response format seemed more optimal than the original four-point response. To achieve model fit, items were deleted from four of the five subscales - Anxious Preoccupation items 7, 25, and 29; Cognitive Avoidance items 11 and 17; Fighting Spirit item 18; and Helplessness-Hopelessness items 16 and 20. For those subscales with sufficient items, analyses supported unidimensionality. Combining items to form the adaptive and maladaptive subscales was partially supported. Conclusions: The original five subscales required item deletion and/or rescaling to improve goodness of fit to the Rasch model. While evidence was found for overarching subscales of adaptive and maladaptive coping, extensive modifications were necessary to achieve this result. Further exploration and validation of over-arching subscales assessing adaptive and maladaptive coping is necessary with cancer survivors. [ABSTRACT FROM AUTHOR]

Background: With the growing recognition that patients and partners react to a cancer diagnosis as an interdependent system and increasing evidence that psychosocial interventions can be beneficial to both patients and partners, there has been a recent increase in the attention given to interventions that target couples. The aim of this systematic review was to identify existing couple-based interventions for patients with cancer and their partners and explore the efficacy of these interventions (including whether there is added value to target the couple versus individuals), the content and delivery of couple-based interventions, and to identify the key elements of couple-based interventions that promote improvement in adjustment to cancer diagnosis. Method: A systematic review of the cancer literature was performed to identify experimental and quasi experimental couple-based interventions published between 1990 and 2011. To be considered for this review, studies had to test the efficacy of a psychosocial intervention for couples affected by cancer. Studies were excluded if they were published in a language other than English or French, focused on pharmacological, exercise, or dietary components combined with psychosocial components, or did not assess the impact of the intervention on psychological distress (e.g., depression, anxiety) or quality of life. Data were extracted using a standardised data collection form, and were analysed independently by three reviewers. Results: Of the 709 articles screened, 23 were included in this review. Couple-based interventions were most efficacious in improving couple communication, psychological distress, and relationship functioning. Interventions had a limited impact on physical distress and social adjustment. Most interventions focused on improving communication and increasing understanding of the cancer diagnosis within couples. Interventions were most often delivered by masters-level nurses or clinical psychologists. Although most were delivered in person, few were telephone-based. No difference in efficacy was noted based on mode of delivery. Factors associated with uptake and completion included symptom severity, available time and willingness to travel. Conclusion: Given effect sizes of couple-based interventions are similar to those reported in recent meta-analyses of patient-only and caregiver-only interventions (~d=.35-.45), it appears couple-based interventions for patients with cancer and their partners may be at least as efficacious as patient-only and caregiver-only interventions. Despite evidence that couple-based interventions enhance psycho-social adjustment for both patients and partners, these interventions have not yet been widely adopted. Although more work is needed to facilitate translation to routine practice, evidence reviewed is promising in reducing distress and improving coping and adjustment to a cancer diagnosis or to cancer symptoms. [ABSTRACT FROM AUTHOR]

Caregivers of men with prostate cancer report high burden, and there is a need to develop cost-effective programs to support them in their roles. This study reports on the acceptability of a dyadic, Tailored, wEb-based, psychosocial and physical activity (PA) self-Management PrOgram called TEMPO. TEMPO was accessed by a convenience sample of 19 men with prostate cancer and their caregivers (n = 18), as well as six health care professionals (HCPs). User feedback was gathered via semi-structured qualitative interviews. Data were analyzed using thematic analysis. Most dyads were satisfied with TEMPO, particularly with the dyadic feature of TEMPO, the focus on goal setting to integrate self-management, and the extensive health library. The patients and caregivers motivated each other as they worked through TEMPO. Most goals to achieve during TEMPO pertained to increasing PA, followed by learning physical symptom management. One unanticipated benefit of TEMPO for the dyads was improved communication. HCPs agreed that TEMPO was a novel approach to online cancer self-management and they echoed the benefits reported by dyads. Key suggestions for improving TEMPO were to reduce repetition, tailor content, add more exercise ideas, and have more printing options. This study provides a strong foundation on which to plan a larger trial. [ABSTRACT FROM AUTHOR]

Both men with prostate cancer and their caregivers report experiencing a number of challenges and health consequences, and require programs to help support the cancer patient–caregiver dyad. A tailored, web-based, psychosocial and physical activity self-management program (TEMPO), which implements behavior change techniques to help facilitate behavior change for the dyads was created and its acceptability was tested in a qualitative study. The purpose of this secondary analysis was to explore the dyads' experiences using behavior change techniques to change behavior and address current needs and challenges while enrolled in TEMPO. Multiple semi-structured interviews were conducted with 19 prostate cancer-caregiver dyads over the course of the program, resulting in 46 transcripts that were analyzed using an inductive thematic analysis. Results revealed four main themes: (1) learning new behavior change techniques, (2) engaging with behavior change techniques learned in the past, (3) resisting full engagement with behavior change techniques, and (4) experiencing positive outcomes from using behavior change techniques. The dyads' discussions of encountering behavior change techniques provided unique insight into the process of learning and implementing behavior change techniques through a web-based self-management program, and the positive outcomes that resulted from behavior changes. [ABSTRACT FROM AUTHOR]

Objective: To test the psychometric properties of the Dutch 45-item Supportive Care Needs Survey—Partners and Caregivers (SCNS-P&C45-D) among partners of women with breast cancer living in the Netherlands. Methods: In this cross-sectional validation study, partners of patients with breast cancer were invited to complete a survey on the patient's cancer and the caregiver's level of unmet needs (SCNS-P&C45-D), psychological distress (HADS) and burden (EDIZ). Results: 43% of the invited informal caregivers responded (n = 302). Flooring effects were identified for three items of the SCNS-P&C45-D,which were then deleted from further analysis. The original factor structure and loading pattern of the SCNS-P&C45-D was not replicated. Internal consistency of the SCNS-P&C45-D and all subscales' (emotional and relational needs, health care and illness related needs, practical needs, work and social needs) Cronbach's alpha coefficients exceeded 0.80, the entire measure's Cronbach's alpha is 0.98. Most SCNS-P&C45-D subscales showed moderate correlations with distress and burden from informal care which was in line with expectations based on validity. The domain 'Work and Social needs' showed a high correlation with burden from informal care. Participants reported significantly more or higher unmet needs if they were younger (25.5% vs. 20.3% in older patients, p = 0.004), if diagnosis was less than 1 year ago in one subscale (Health Care and Illness related needs; 19.5% and 18%, p = 0.029, and the total SCNS-P&C45-D; 23.2% vs. 22.4%, p = 0.018). Conclusions: The SCNS-P&C45-D is able to identify those partners of patients with breast cancer in need and those who are not. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]