A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways?

Childhood, adolescent, and young adult (CAYA) cancer survivors are at risk of developing late effects associated with their cancer and its treatment. Survivors' engagement with recommended follow-up care to minimize these risks is suboptimal, with many barriers commonly reported. This scoping review aims to summarize the barriers to accessing follow-up care, using the dimensions of Levesque's framework for accessing healthcare. We retrieved quantitative studies addressing barriers and facilitators to accessing survivorship care in CAYA survivors from PubMed, EMBASE and CINAHL. Data was categorized into the five healthcare access dimensions outlined in Levesque's framework: i) approachability, ii) acceptability, iii) availability and accommodation, iv) affordability, and v) appropriateness. We identified 27 quantitative studies in our review. Commonly reported barriers to accessing care included a lack of survivor and provider knowledge of cancer survivorship, poor health beliefs, low personal salience to engage in follow-up care, high out-of-pocket costs and survivors living long distances from clinical services. Many studies reported increased barriers to care during the transition from paediatric to adult-oriented healthcare services, including a lack of developmentally appropriate services, lack of appointment reminders, and a poorly defined transition process. Healthcare-related self-efficacy was identified as an important facilitator to accessing follow-up care. The transition from pediatric to adult-oriented healthcare services is a challenging time for childhood, adolescent, and young adult cancer survivors. Optimizing CAYAs' ability to access high-quality survivorship care thus requires careful consideration of the quality and acceptability of services, alongside financial and physical/practical barriers (eg distance from available services, appointment-booking mechanisms). Levesque's model highlighted several areas where evidence is well established (eg financial barriers) or lacking (eg factors associated with engagement in follow-up care) which are useful to understand barriers and facilitators that impact access to survivorship for CAYA cancer survivors, as well as guiding areas for further evaluation

Comparison of an anxiety management program for children implemented at home and school : lessons learned

The feasibility of delivering an early intervention program for the management of child anxiety in either a school- or home setting, relative to a waitlist-control condition, was investigated in this study. Two thousand eight hundred and eighteen Australian children in grades 2–6 were screened for anxiety, and a high-anxious sample of 325 (those scoring in the 90–100th percentile relative to their age-mates) were invited to participate. Of these, 152 consented to participate in the anxiety program. Measures were collected from participating children, their parents, teachers and school counselors. Children participating in the active conditions (home-based and school-based interventions) showed significantly greater reductions in anxiety and anxiety-related interference in daily life, compared to the waitlist-control group according to parents’ reports. In contrast, reports from children and teachers failed to show significant group differences on measures of anxiety. Although these preliminary results show some promise, their replication in future research is necessary given current study limitations. Consideration of feasibility issues, implementation challenges and directions for future research is discussed along with key recommendations for the translation of evidence-based programs to settings beyond the psychology clinic, such as the school and home environments.12 page(s

Returning to school after adolescent cancer : a qualitative examination of Australian survivors' and their families' perspectives

Purpose: To examine key factors related to adolescent cancer survivors’ return to school after cancer treatment completion, which can be a time of complex transition. Patients and Methods: Seventy semi-structured interviews were conducted with 19 adolescent cancer survivors (mean age 16.1 years), 21 mothers, 15 fathers, and 15 siblings from 22 Australian families. The conceptual framework of Miles and Huberman (1994) was employed to analyze interview data and emergent themes were organized using the software package QSR NVivo 8.0. Results: Barriers to successful school re-entry included symptoms of fatigue, anxiety (particularly regarding examinations), and poor communication between families and the broader school community. Changing grade or school typically extinguished pre-existing support networks and was perceived by parents as a period of unmet need. Support from friends, teachers, tutors, and the hospital outreach nurse were seen as instrumental in creating a positive school re-entry experience. However, the majority of participants reported that support from the school counselor was minimal. Siblings reported this period as relatively non-impactful regarding their own education. Conclusions: Additional support is needed to help parents navigate the education system and to advocate effectively for their child’s academic needs beyond the immediate re-entry period. There is strong potential for school counselors to increase the level of support they provide adolescents and their parents during the school reentry period. The impact of this period on siblings’ education is under-studied and warrants further research

Perceptions of melanoma risk among Australian adolescents: barriers to sun protection and recommendations for improvement

Abstract Objectives: To explore adolescents’ perceptions of melanoma risk, sun protection intervention preferences and perceived barriers to sun protection recommendations. Methods: Semi‐structured focus groups were held in school classes, stratified by location (coastal, inland) and sector (public, private); discussions were transcribed verbatim and data were analysed using NVivo8 software. Results: 100 students (mean age=14.4 years, SD=0.5; range=14–16 years) from six high schools participated. Students demonstrated a high level of sun protection knowledge and understanding of sun exposure as a primary risk factor for the development of melanoma. There was, however, an under‐estimation of melanoma prevalence and mortality rates among youth, and poor understanding of the increased risk associated with sunburn during childhood/adolescence. Adolescents’ preferences for intervention focused on first‐person accounts of receiving a melanoma diagnosis, communicated by young melanoma survivors. Interventions modelled on youth marketing campaigns or utilising social media were rated poorly. Conclusions: Despite young Australians’ adequate knowledge of melanoma and related health recommendations, poor adherence continues to place young people at risk. Study findings suggest that social media interventions developed to influence behaviour change, are not necessarily preferred by adolescents

Sleep disturbances in childhood cancer survivors [letter to the editor]

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"Forewarned and forearmed" : long-term childhood cancer survivors' and parents' information needs and implications for survivorship models of care

Objective: This mixed-method study assessed 1) survivors' and parents' information needs; and 2) associations between unmet information needs and clinical and socio-demographic characteristics. Methods: Stage 1: CCS and parents of CCS, >5years post-diagnosis completed a questionnaire on information needs, overall health and perceived risk. Predictors for unmet information needs were assessed by multivariable regression. Stage 2: participants were interviewed in-depth on these topics. Results: Questionnaires were completed by 485 participants comprising 322 survivors (mean age: 26.7years, SD = 7.9; time since diagnosis: 19.7years, SD = 8.8) and 163 parents (child age: 12.9years, SD = 2.4; time since diagnosis: 9.7years, SD = 2.3), and complemented by 70 interviews. Survivors reported unmet information needs about late effects (57.5%) and parents for fertility issues (62.5%). Survivors had more unmet needs for medical information whereas parents had significantly more regarding sexual issues and lifestyle. Being a parent (p = 0.001), dissatisfaction with follow-up care (p = 0.003), lower overall health (p = 0.014), higher perceived risk of late effects (p < 0.001), and greater anxiety/depression (p < 0.001) were significantly associated with more unmet needs. Conclusion: Unmet information needs were common for survivors and parents of CCS. Practice implications: Future efforts towards tailoring information on potential late effects, healthy lifestyles and follow-up care may help to address unmet information needs.9 page(s

Adolescent cancer and health-related decision-making : an Australian multi-perspective family analysis of appointment attendance and involvement in medical and lifestyle choices

Purpose: The aim of this study was to explore the decision-making experiences of adolescent cancer patients and their parents and siblings for medical and social decisions and appointment participation, both during and after cancer treatment. Patients and methods: Seventy semi-structured interviews were conducted with 19 adolescent cancer survivors (mean age at diagnosis = 13.3 years; average time since diagnosis = 48.6 months; mean age at interview = 16.1 years), 21 mothers, 15 fathers, and 15 siblings from 22 families. Interviews were analyzed inductively using qualitative research methodology. Emergent themes were cross-tabulated by participants’ characteristics. Results: Mothers were most likely to accompany adolescents to medical appointments, especially during the post-treatment period, although fathers were eager to attend when possible. In accordance with adolescent and parent preferences, oncologists typically made major medical decisions, while families took responsibility for social and less critical medical decisions. These less critical decisions were a potential source of family conflict, particularly in relation to risk-taking behavior post-treatment. Siblings reported adopting additional decisional responsibilities, especially during their brother’s or sister’s treatment. Conclusion: Health related decision-making within families can be difficult during adolescence, as young people assert their increasing independence. These challenges are exacerbated by a cancer diagnosis, which creates a unique paradox of legal entitlement versus parental responsibility. While adolescents and parents believe young people are entitled to be informed, they may be reluctant to assume responsibility for decisions that might affect prognosis, and report that maturity does not map well to chronological age. Attention to sibling needs is necessary to minimize the burden they carry during the family’s cancer journey

Adolescent Cancer and Health-Related Decision-Making: An Australian Multi-Perspective Family Analysis of Appointment Attendance and Involvement in Medical and Lifestyle Choices

Purpose: The aim of this study was to explore the decision-making experiences of adolescent cancer patients and their parents and siblings for medical and social decisions and appointment participation, both during and after cancer treatment. Patients and methods: Seventy semi-structured interviews were conducted with 19 adolescent cancer survivors (mean age at diagnosis = 13.3 years; average time since diagnosis = 48.6 months; mean age at interview = 16.1 years), 21 mothers, 15 fathers, and 15 siblings from 22 families. Interviews were analyzed inductively using qualitative research methodology. Emergent themes were cross-tabulated by participants’ characteristics. Results: Mothers were most likely to accompany adolescents to medical appointments, especially during the post-treatment period, although fathers were eager to attend when possible. In accordance with adolescent and parent preferences, oncologists typically made major medical decisions, while families took responsibility for social and less critical medical decisions. These less critical decisions were a potential source of family conflict, particularly in relation to risk-taking behavior post-treatment. Siblings reported adopting additional decisional responsibilities, especially during their brother’s or sister’s treatment. Conclusion: Health related decision-making within families can be difficult during adolescence, as young people assert their increasing independence. These challenges are exacerbated by a cancer diagnosis, which creates a unique paradox of legal entitlement versus parental responsibility. While adolescents and parents believe young people are entitled to be informed, they may be reluctant to assume responsibility for decisions that might affect prognosis, and report that maturity does not map well to chronological age. Attention to sibling needs is necessary to minimize the burden they carry during the family’s cancer journey