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Introduction: Adolescent and young adult (AYA; 13 to 39 years) survivors of childhood cancer may be especially vulnerable to physical health and mental health concerns during the pandemic. We investigated the impact of COVID-19 on the mental health status of AYA survivors (Aim 1) and shared tailored, evidence-based health-related information on COVID-19 (Aim 2). Methods: Between May and June 2020, participants completed a cross-sectional online survey assessing their cancer history, current mental health status, and their COVID-19 information needs Results: Ninety-four participants (78 females, 13 males, 2 non-binary) with a mean age of 26.9 years (SD = 6.2) were included in the final sample. Participants reported residing from 10 countries and 94% identified as White. Nearly half of the participants (49%) described their mental health status as worse now than before the pandemic. Thirty-nine participants (41%) that indicated their current mental health status was tied to fears/worries about their past cancer and treatment experienced a higher level of anxiety and PTSS than those who did not report the same. Most participants (77%) had not received any information related to the potential risks of COVID-19 and expressed an interest in receiving this information. In response, an infographic detailing recommended strategies for coping with mental health in the pandemic, along with preliminary study findings, was developed. Discussion: AYA survivors reporting their mental health status was linked to their past cancer experienced poorer mental health. There is a value to educating survivors on their potential health risks, but accounting for their perceived mental health vulnerabilities should be considered when disseminating knowledge. The use of an infographic is a unique contribution towards the development of innovative and personalized means of sharing health education to this vulnerable yet resilient group. This research on the mental health status of AYA survivors very early in the pandemic informs continued initiatives investigating the rapidly changing nature of how COVID-19 may impact AYA survivors today and in the future., + ID der Publikation: unilu_59488 + Sprache: Englisch + Letzte Aktualisierung: 2022-06-27 15:03:13

Xiomara Skrabal Ross,1,2 Kate M Gunn,1,3 Pandora Patterson,4,5 Ian Olver6 1Cancer Research Institute, University of South Australia, Adelaide, South Australia, Australia; 2School of Health Sciences, University of South Australia, Adelaide, South Australia, Australia; 3Department of Rural Health, University of South Australia, Adelaide, South Australia, Australia; 4Faculty of Nursing, Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia; 5Research and Youth Cancer Services, CanTeen Australia, Sydney, New South Wales, Australia; 6Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, South Australia, AustraliaCorrespondence: Kate M GunnUniversity of South Australia, City West Campus, HB Building, 8-25, Adelaide, South Australia, AustraliaTel +61 8 830 22137Email kate.gunn@unisa.edu.auPurpose: To describe the theoretical, evidence-based and consumer-informed development of a smartphone self-management program aiming to support adherence to oral chemotherapy in adolescents and adults diagnosed with cancer.Methods: The design of the program followed two frameworks for the development and evaluation of mHealth interventions and was conducted in three steps: 1) conceptualization, which involved an extensive literature review and a scoping review that led to the identification of the behavioral change strategies in the program; 2) definition of features and structure, based on a formative study with end-users to explore their preferences about the structure and elements of the program; and 3) selection of program delivery technology, whereby available technology platforms were examined and the most suitable tool to deliver the program was selected.Results: Three main reasons for oral chemotherapy non-adherence were identified: forgetfulness, side-effects and poor knowledge about oral chemotherapy. Key behavior change strategies were also identified, namely, medication intake reminders and information about oral chemotherapy and managing side-effects. Based upon end-user feedback the method of delivery of these behavioral strategies that was deemed most appropriate was conventional text messages. The reminders were standard, short, text-only messages sent when each oral chemotherapy dose was due, one way (no need to reply) and addressed the end-users using their first name. Delivery of information about oral chemotherapy and side-effects was tailored to each individual’s preferred frequency.Conclusion: The careful design process described in this paper may serve to inform the development of future mobile phone-based medication adherence-enhancing interventions for people with cancer. A trial to explore end-users acceptability of and satisfaction with the intervention is currently underway.Trial Registration: ACTRN12618001987257p.Keywords: oral chemotherapy, medication adherence, mobile phone, smartphone, text messages, cancer

BackgroundAdherence to oral chemotherapy is crucial to maximize treatment outcomes and avoid health complications in cancer patients. Mobile phones are widely available worldwide, and evidence that this technology can be successfully employed to increase medication adherence for the treatment of other chronic diseases (eg, diabetes) is well established. However, the extent to which there is evidence that mobile phone–based interventions improve adherence to oral chemotherapy is unknown. ObjectiveThis scoping review aims to explore what is known about mobile phone–delivered interventions designed to enhance adherence to oral chemotherapy, to examine the reported findings on the utility of these interventions in increasing oral chemotherapy adherence, and to identify opportunities for development of future interventions. MethodsThis study followed Arksey and O’Malley’s scoping review methodological framework. ResultsThe review search yielded 5 studies reporting on 4 interventions with adults (aged >18 years) diagnosed with diverse cancer types. All interventions were considered acceptable, useful, and feasible. The following themes were evident: text messages and mobile apps were the main methods of delivering these interventions, the 2 most commonly employed oral chemotherapy adherence–enhancing strategies were management and reporting of drug-related symptoms and reminders to take medication, the importance of stakeholders’ engagement in intervention design, and the overall positive perceptions of delivery features. Areas for future research identified by this review include the need for further studies to evaluate the impact of mobile phone–delivered interventions on adherence to oral chemotherapy as well as the relevance for future studies to incorporate design frameworks and economic evaluations and to explore the moderator effect of high anxiety, poor baseline adherence, and longer time taking prescribed drug on adherence to oral chemotherapy. ConclusionsDespite the increasing body of evidence on the use of mobile phones to deliver medication adherence–enhancing interventions in chronic diseases, literature on the oral chemotherapy context is lacking. This review showed that existing interventions are highly acceptable and useful to cancer patients. The engagement of stakeholders as well as the use of a design framework are important elements in the development of mobile phone–delivered interventions that can be translated into oncology settings.

Claire E Wakefield,1,2 Pandora Patterson,3 Fiona E J McDonald,3 Helen L Wilson,1,2 Esther Davis,3 Ursula M Sansom-Daly2,41School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; 2Centre for Children's Cancer and Blood Disorders, Sydney Children's Hospital, Sydney, NSW, Australia; 3CanTeen, Sydney, NSW, Australia; 4School of Psychology, University of New South Wales, Sydney, NSW, AustraliaPurpose: Given the burgeoning body of research relating to the psychosocial needs of adolescents and young adults (AYAs) with cancer, this review aimed to evaluate the psychometric properties and appropriateness of the instruments available for use in this unique population. Specifically, we reviewed published instruments developed to assess psychological distress (depression, anxiety, stress, and fear of recurrence), psychological growth (resilience, posttraumatic growth, and benefit finding), unmet needs, coping, quality of life, identity, and mindfulness-based practices and skills in AYAs with cancer. Given the dearth of validated instruments targeting AYAs with cancer, this review also provides a summary of promising measures yet to be formally validated in this population.Methods: Five electronic databases were searched by a team of six researchers, and studies involving AYAs (who have or have had cancer) aged 15–30 years, and published between 1982 and 2012 were reviewed. Of 410 abstracts, 7 instruments were identified as validated in this population, with a further 19 identified as promising.Results: While there are numerous scales to assess psychosocial outcomes in cancer, few have been specifically validated for AYAs affected by cancer, particularly in the domains of psychological distress, psychological growth, coping, unmet needs, and identity. There are relatively more instruments validated, or promising, for assessment of quality of life than scales for other domains.Conclusion: In the AYA context, scale selection should be undertaken with thought directed towards the characteristics of this sample (eg, developmental maturity, literacy, and social context), the practicalities of the setting (eg, available funding and resources, time restrictions, and researcher expertise), and the science underlying the scale (eg, theoretical framework and psychometric properties). While multiple measures of psychosocial outcomes are frequently used in AYAs, further research is clearly needed to provide rigorous evidence of the reliability and validity of these tools in young people affected by cancer.Keywords: adolescents, young adults, psychometric outcomes, psychological outcomes, distress, resilience, coping, quality of life, unmet needs, identity, mindfulness

Background Online technologies may reduce barriers to evidence-based mental health care, yet they also create numerous ethical challenges. Recently, numerous professional organizations and expert groups have produced best-practice guidelines to assist mental health professionals in delivering online interventions in an ethically and clinically sound manner. However, there has been little critical examination of these international best-practice guidelines regarding appropriate electronic mental health (e-mental health) service delivery via technologies such as videoconferencing (including Skype), particularly for specific, vulnerable populations. Further, the extent to which concordance exists between these guidelines remains unclear. Synthesizing this literature to provide clear guidance to both mental health professionals and researchers is critical to ensure continued progress in the field of e-mental health. Objective This study aims to review all currently available ethical and best-practice guidelines relating to videoconferencing-delivered mental health treatments in order to ascertain the recommendations for which international consensus could be found. Additionally, this review examines the extent to which each set of guidance addresses several key special populations, including children and young people, and populations living with illness. Methods This systematic review examined guidelines using a two-armed search strategy, examining (1) professional organizations’ published guidance; and (2) MEDLINE, PsycINFO, and EMBASE for the past ten years. In order to determine consensus for best-practice, a recommendation was considered "firm" if 50% or more of the reviewed guidelines endorsed it and "tentative" if recommended by fewer guidelines than these. The professional guidelines were also scored by two raters using the Appraisal of Guidelines for Research and Evaluation II (AGREE-II) criteria. Results In the study, 19 guidelines were included, yielding 11 specific "firm" and a further 123 "tentative-level" recommendations regarding the appropriateness of e-mental health, competence, legal and regulatory issues, confidentiality, consent, professional boundaries, and crisis management. International consensus yielded firm guidance across almost all areas except professional boundaries and some aspects of determining the appropriateness of e-mental health. Few guidelines specifically addressed special populations. Overall guideline quality varied; however, 42% (8/19) of the guidelines scored at least 5 out of 7. Conclusions This synthesis of guidelines provides a foundation for clinicians and researchers utilizing e-mental health worldwide. The lack of specific guidance relating to special populations is an area warranting further attention in order to strengthen mental health professionals’ and researchers’ capacity to ethically and effectively tailor e-mental health interventions to these groups.

Refereed/Peer-reviewed Not monitoring adherence to oral anticancer therapies (OAT) can lead to poor clinical outcomes, including premature death as reported by Foulon et al. (Acta Clin Belg 66(2):85–96, 2011) and Greer et al. (Oncologist 21(3):354–76, 2016). Barriers to the implementation of supportive cancer care interventions in medication adherence occur with multiple hospital sites, cancer diagnoses, and numerous healthcare professionals. This commentary describes challenges and strategies from two OAT adherence trials in Australia and Switzerland to assist researchers in the design and implementation of future interprofessional trials.

Refereed/Peer-reviewed Objective: To evaluate the psychometric properties of the Perceptions of Parental Illness Questionnaire for Cancer (PPIQ-C) among adolescents and young adults (AYAs). Methods: A sample of 372 AYAs (aged 12–24 years) who had a parent diagnosed with cancer completed the PPIQ-C and the Kessler Psychological Distress Scale (K10). Exploratory factor analyses were conducted to examine the dimensional structure of the PPIQ-C. Scale reliability was evaluated using Cronbach's alpha (α) and McDonald's omega (ω). Pearson correlation analyses were conducted to assess construct validity by examining correlations between PPIQ-C subscale scores and K10 total scores. Results: The PPIQ-C is organised into three sections, each with a separate factor structure for items representing identity, core (emotional representations, coherence, timeline, consequences, and controllability), and cause dimensions of the Common-Sense Model of Self-Regulation. Exploratory factor analyses determined the structure of each section: identity items comprised two subscales (12 items), core items comprised 10 subscales (38 items), and cause items comprised three subscales (11 items). Scale reliability was acceptable for all subscales, except the cause subscale chance or luck attributions (α = 0.665). Correlations between PPIQ-C subscale scores and K10 total scores provided support for construct validity. Conclusions: Preliminary evidence suggests that the PPIQ-C is a reliable, valid, and useful tool for assessing illness perceptions among AYAs with a parent with cancer. The PPIQ-C may be a useful addition to both clinical practice and future research, however further evaluation work is needed to confirm its structure and robustness prior to use.

Purpose Given the large number of adolescents and young adults (AYAs) impacted by parental cancer and the potential for negative psychosocial outcomes in this vulnerable population, this study examined the mediating role of offspring unmet needs with regard to parental cancer and the relation between AYAs psychosocial adjustment and perceived illness unpredictability. Methods A total of 113 AYAs (aged 11–24 years) living with a parent diagnosed with cancer completed a questionnaire assessing illness unpredictability, offspring unmet needs, and psychosocial adjustment (i.e., health-related quality of life and internalizing problems). Results Higher offspring unmet needs were associated with lower health-related quality of life (r = –0.24**) and higher internalizing problems (r = 0.21*). Offspring unmet needs mediated the relation between illness unpredictability and health-related quality of life (standardized indirect effect = –0.100* [–0.183, –0.018]) but not internalizing problems (standardized indirect effect = 0.067 [–0.015, 0.148]). In particular, higher illness unpredictability was related to higher unmet needs (β = 0.351**) which, in turn, predicted lower health-related quality of life (β = –0.286**). Conclusion These findings identify offspring unmet needs and illness unpredictability as implicated in AYAs positive psychosocial adjustment to parental cancer. Given that AYAs are at greater risk of elevated psychosocial difficulties, interventions should target offspring unmet needs and perception of illness unpredictability to mitigate the adverse effects of parental cancer.

Aim: Nonadherence to oral chemotherapy (OC) can lead to health complications, including premature death. Mobile phones are increasingly used to deliver medication adherence interventions. However, there is limited evidence about mobile phone-based interventions to increase adherence to OC, specifically. This study explores the proof-of-concept of a smartphone program to support adherence to OC in people with cancer. Methods: This was a 10-week, nonrandomized, multisite trial. The outcomes assessed were acceptability, satisfaction with the intervention, adherence to OC, knowledge about OC, and side-effects presence and severity. The program consisted of short message service (SMS) reminders to take OC, as well as information about OC, including the management of side-effects. Results: Twenty-two participants (17-74 y/o, median age 60 y/o) were recruited at six hospitals. The sample included 10 different cancer diagnoses (predominance of breast cancer) and 11 OC medications. Acceptability of the intervention was high, with 95% of the enrolled participants completing postintervention measures, and 81% reporting high satisfaction with the program. The intervention was found to have no effect on supporting adherence to OC (assessed by self-report and medication event monitoring system) in this sample. An increase in knowledge about OC was observed at postintervention (p = 0.010). Conclusions: This study demonstrated proof-of-concept of the smartphone program and highlighted the need for intervention and trial design-related refinements. Future work should evaluate the effect of the program on adherence to OC with nonadherent patients. Refereed/Peer-reviewed

Although illness perceptions have significant implications for psychological morbidity in those diagnosed with a physical illness, the strength of this relationship in their family members remains understudied. The validity of findings is dependent on the quality of the instruments used; therefore, it is essential that psychometrically robust measures of illness perceptions are available. The purpose of this systematic review was to identify, assess and compare the psychometric properties of instruments designed to measure illness perceptions in family members of individuals with chronic physical illnesses. A systematic search was conducted using MEDLINE, PubMed, CINAHL, Scopus and PsycINFO databases, and supplemented with forward and backward searches. Studies were included in the review if they described the development, adaptation or psychometric evaluation of an instrument designed to measure illness perceptions in family members of an individual with a chronic physical illness. The methodological quality of included studies was assessed using the COSMIN Risk of Bias checklist. The psychometric quality of instruments was evaluated using published quality assessment criteria. Eleven articles describing nine different instruments were included in the review. Almost all instruments were designed for parents of a child with a chronic illness. There was wide variation in the quality of methods used to develop, adapt or evaluate the instruments, and missing information restricted the evaluation of psychometric properties. Further validation is needed for all instruments before meaningful conclusions can be drawn. Findings indicate that measurement of illness perceptions in children or siblings of an individual with a chronic physical illness has been largely ignored. Future research addressing this gap would be an important addition to the current body of work examining illness perceptions in family members Refereed/Peer-reviewed

Purpose: Adherence to oral antineoplastic drugs is a complex phenomenon, and knowledge about the reasons that people with cancer do not adhere to their prescriptions is essential to inform adherence-related support in clinical and research contexts. This study aims to provide an up-to-date summary of the key reasons for non-adherence to oral antineoplatic drugs (OAD) in people with cancer. Methods: Electronic databases Medline, Embase, Emcare, and PsychINFO were searched for systematic reviews and studies published between January 2010 and March 2018. Data was analyzed and extracted by two independent reviewers. Results: Three systematic reviews and two studies were included in the review. Key factors for non-adherence were classified as either modifiable or non-modifiable factors. Side effects, forgetfulness, and poor knowledge about OAD were identified as modifiable factors while co-payment, age, regimen complexity. and time since diagnosis were identified as non-modifiable factors. Most of the included studies focused on breast cancer and chronic myeloid leukemia (CML) patients. Low methodological quality and different adherence cut-off rates were observed in the included literature. Conclusions: More research with rigorous methodology and diverse cancer types is needed to increase evidence on the reasons for OAD non-adherence. However, findings from this study may serve to aid in drafting guidelines and suitable interventions for adherence-related support to OAD users. Refereed/Peer-reviewed

Purpose: Cancer is a significant health concern for adolescents and young adults (AYAs; aged 15-24 years). Monitoring population-level changes in incidence, mortality, and survival is complicated by the lack of published data presenting statistics separately for AYAs. This study synthesizes and reviews data on AYA cancers in Australia, including trends in incidence and mortality. Methods: National data were extracted for 1980-2012, primarily from the Australian Cancer Database and Australian National Mortality Database. Incidence, mortality, and survival trends are described, and incidence and mortality projections are reported. Results: In 2000-2009, the annual all-cancer incidence was 31.7 cases per 100,000 population, and the mortality rate was 4.1 per 100,000. Incidence, mortality, and survival varied widely, indicating areas of concern. Melanoma was the most common cancer, and bone cancer had the highest mortality and poorest survival rates. All-cancer incidence rates peaked in the late 1990s, but then declined, largely due to melanoma. All-cancer mortality decreased throughout the study period, but showed no improvements for some common sites (i.e., brain, bone, soft tissue). Further reductions in all-cancer incidence and mortality are projected for the next decade, although specific cancers (colorectal cancers and lymphomas) were projected to increase in incidence. Conclusions: Observed Australian cancer trends are largely consistent with trends for other high-income populations. While overall decreases in incidence and mortality are encouraging, consistently high mortality and poor survival for some cancers remain concerning. Planned data initiatives for AYAs with cancer will aid in resolving whether trends continue and projections are realized in the future. Refereed/Peer-reviewed

Background Individuals construct beliefs about an illness based on their own perceptions, interpretation, and understanding of the illness and its treatment. These beliefs (collectively referred to as "illness cognitions" or "representations") can have implications for psychological outcomes in family members and carers of an individual with an illness. The aim of this study was to explore young people’s perceptions of their parent’s cancer using the Common-Sense Model of Self-Regulation as a theoretical framework.Methods Semi-structured, one-on-one interviews were conducted with young people who had a parent diagnosed with cancer.Interview transcripts were analysed using deductive thematic analysis techniques.Results Eleven young people aged 15–24 years participated in the study. Major themes aligned with the dimensions of the Common-Sense Model of Self-Regulation. Young people described their experiences with parental cancer with reference to cognitive representations (beliefs about the illness identity, their understanding or coherence of the illness, and consequences,curability or controllability, timeline, and cause of the illness) and emotional representations (emotional beliefs and subjective feelings about the illness). Conclusions Findings indicate that young people’s perceptions of their parent’s cancer can be usefully described within the framework of the Common-Sense Model of Self-Regulation. Future research should investigate the relationships between young people’s illness cognitions, coping strategies, and psychological adjustment following their parent’s cancer diagnosis. This will provide valuable insights for the development of interventions that target specific types of illness cognitions associated with maladaptive coping strategies and poor adjustment. Refereed/Peer-reviewed

Purpose: To describe the theoretical, evidence-based and consumer-informed development of a smartphone self-management program aiming to support adherence to oral chemotherapy in adolescents and adults diagnosed with cancer.Methods: The design of the program followed two frameworks for the development and evaluation of mHealth interventions and was conducted in three steps: 1) conceptualization, which involved an extensive literature review and a scoping review that led to the identification of the behavioral change strategies in the program; 2) definition of features and structure, based on a formative study with end-users to explore their preferences about the structure and elements of the program; and 3) selection of program delivery technology, whereby available technology platforms were examined and the most suitable tool to deliver the program was selected.Results: Three main reasons for oral chemotherapy non-adherence were identified: forgetfulness, side-effects and poor knowledge about oral chemotherapy. Key behavior change strategies were also identified, namely, medication intake reminders and information about oral chemotherapy and managing side-effects. Based upon end-user feedback the method of delivery of these behavioral strategies that was deemed most appropriate was conventional text messages. The reminders were standard, short, text-only messages sent when each oral chemotherapy dose was due, one way (no need to reply) and addressed the end-users using their first name. Delivery of information about oral chemotherapy and side-effects was tailored to each individual's preferred frequency.Conclusion: The careful design process described in this paper may serve to inform the development of future mobile phone-based medication adherence-enhancing interventions for people with cancer. A trial to explore end-users acceptability of and satisfaction with the intervention is currently underway. Refereed/Peer-reviewed