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Jordana K McLoone,1,2 Ursula M Sansom-Daly,1,2 Alexia Paglia,1,2 Jessica Chia,1,2 Hanne Bækgaard Larsen,3 Lorna A Fern,4 Richard J Cohn,1,2 Christina Signorelli1,2 1Behavioural Sciences Unit, Discipline of Paediatrics & Child Health, School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, UNSW Sydney, Sydney, NSW, Australia; 2Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia; 3Department for Pediatric and Adolescent Medicine, The Juliane Marie Center, Copenhagen University Hospital–Rigshospitalet, Copenhagen, Denmark & Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark; 4Cancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, London, NW1 2PG, UKCorrespondence: Jordana K McLoone, Discipline of Paediatrics & Child Health, UNSW Medicine & Health, Randwick Clinical Campus, UNSW, Sydney, NSW, Australia, Email J.McLoone@unsw.edu.auAbstract: 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.Keywords: pediatric, adolescent and young adult, cancer, survivorship care, barriers, access to care

Joseph Elliot Alchin,1,2 Christina Signorelli,1,2 Jordana Kathleen McLoone,1,2 Claire Elizabeth Wakefield,1,2 Joanna Elizabeth Fardell,1,2 Karen Johnston,1 Richard J Cohn1,2 1Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia; 2School of Women’s and Children’s Health,UNSW Medicine, University of New South Wales, Sydney, NSW, AustraliaCorrespondence: Christina Signorelli, Kids Cancer Centre, Level 1 South, Sydney Children’s Hospital, High St, Randwick, NSW, 2031, Australia, Tel +61 431 547 350, Fax +61-2-9382-1789, Email c.signorelli@unsw.edu.auPurpose: Ongoing survivorship care allows childhood cancer survivors the opportunity to address treatment-related health problems and improve their quality of life. However, many survivors do not adhere to their healthcare professionals’ recommendations and the factors supporting their adherence remain unclear.Patients and Methods: Long-term childhood cancer survivors completed the “Re-engage” program, which assessed survivors’ heath needs and provided individualised recommendations for health interventions and surveillance developed by an expert multi-disciplinary team (MDT). We measured survivors’ recall of, and adherence to, their individualised healthcare recommendations at one and six months post-intervention. We conducted a series of univariate negative binomial regressions to investigate factors associated with the total number of recommendations that were correctly recalled and adhered to.Results: We analysed the data of 25 childhood cancer survivors who participated in Re-engage (mean age = 31.9 years). On average, survivors were provided with 6.6 recommendations (range = 1– 11). Survivors accurately recalled receiving 3.0 recommendations at one month post-intervention and 1.9 at six months. Survivors had adhered to an average of 1.3 recommendations by six-month follow-up. In total, 56% of participants reported that they did not adhere to any recommendations. By six-month follow-up, greater adherence to MDT recommendations was associated with having a history of a second cancer (B = 1.391; 95% confidence interval [CI], 0.686 to 2.097; p

Primary prevention and early detection continue to be of paramount importance in addressing the public health threat of skin cancer. The aim of this systematic review was to provide a comprehensive overview of the prevalence and correlates of skin cancer-related health behaviors in the general population. To achieve this aim, 91 studies published in international peer-reviewed journals over the past three decades were reviewed and synthesized. Reported estimates of sunscreen use varied considerably across studies, ranging from 7 to 90%. According to self-report, between 23 and 61% of individuals engage in skin self-examination at least once per year, and the documented prevalence of annual clinical skin examination ranges from 8 to 21%. Adherence to sun protection and screening recommendations is associated with a range of factors, including: female gender, sun-sensitive phenotype, greater perceived risk of skin cancer, greater perceived benefits of sun protection or screening, and doctor recommendation for screening. The literature suggests that a large proportion of the general population engage in suboptimal levels of sun protection, although there is substantial variability in findings. The strongest recommendation to emerge from this review is a call for the development and widespread use of standardized measurement scales in future research, in addition to more studies with a population-based, multivariate design. It is also recommended that specific targeted interventions are developed to increase the prevalence of preventative and early intervention behaviors for the control of skin cancer. [ABSTRACT FROM AUTHOR]

Background: Survivors of childhood neuroblastoma are at risk of multiple treatment-related health problems (late effects), impacting their quality of life. While late effects and quality of life among Australia and New Zealand (ANZ) childhood cancer survivors have been reported, the outcomes of neuroblastoma survivors specifically have not been reported, limiting critical information to inform treatment and care., Methods: Young neuroblastoma survivors or their parents (as proxy for survivors <16 years) were invited to complete a survey and optional telephone interview. Survivors' late effects, risk perceptions, health-care use, and health-related quality of life were surveyed and analyzed using descriptive statistics and linear regression analyses. In-depth interviews explored participants' experiences, knowledge, and perception of late effects and information needs. Thematic content analysis was used to summarize the data., Results: Thirty-nine neuroblastoma survivors or parents completed questionnaires (median age = 16 years, 39% male), with 13 also completing interviews. Thirty-two participants (82%) reported experiencing at least 1 late effect, most commonly dental problems (56%), vision/hearing problems (47%), and fatigue (44%). Participants reported high overall quality of life (index = 0.9, range = 0.2-1.0); however, more participants experienced anxiety/depression compared to the population norm (50% met criteria versus 25%, χ 2  = 13, p  < 0.001). Approximately half of participants (53%) believed they were at risk of developing further late effects. Qualitatively, participants reported knowledge gaps in understanding their risk of developing late effects., Conclusion: Many neuroblastoma survivors appear to experience late effects, anxiety/depression and have unmet cancer-related information needs. This study highlights important areas for intervention to reduce the impact of neuroblastoma and its treatment in childhood and young adulthood.

Objectives: Childhood cancer survivors are at risk of developing primary recurrences and new second cancers. Experiencing a recurrence and/or second cancer can be highly distressing for survivors and families. We aimed to understand the psychological impacts of experiencing a recurrence or second cancer and how this potentially influences survivors' engagement with survivorship care., Methods: We invited childhood cancer survivors or their parents if survivors were ≤16 years of age from 11 tertiary pediatric oncology hospitals across Australia and New Zealand to complete interviews. We conducted a thematic analysis facilitated by NVivo12., Results: We interviewed 21 participants of whom 16 had experienced a recurrence, 3 had a second cancer, and 2 had both a recurrence and second cancer. Participants reported that a recurrence/second cancer was a stressful sudden disruption to life, accompanied by strong feelings of uncertainty. Participants tended to be less aware of their second cancer risk than recurrence risk. Some participants reported feelings of anxiousness and despair, describing varying responses such as gratitude or avoidance. Participants shared that the fear of cancer recurrence either motivated them to adopt protective health behaviors or to avoid information and disengage from survivorship care., Significance of Results: Some survivors and their parents have a poor understanding and expressed reluctance to receive information about their risk of second cancer and other treatment-related late effects. Improving the delivery of information about late effects to families may improve their engagement with survivorship care and surveillance, although care must be taken to balance information provision and survivors' anxieties about their future health.

Background: Childhood cancer survivors are vulnerable to long-term treatment-related health conditions, which can lead to poor quality of life. Little data exist on the overall health of long-term Australian and New Zealand childhood cancer survivors or on survivors' motivations for attending survivorship clinics., Methods: This study administers a cross-sectional questionnaire to long-term survivors ≥5 years from their primary diagnosis. We compared participant-reported number of late effects by a cancer diagnosis, and identified clinical (eg, treatment) and demographic (eg, age) factors that were associated with late effects burden and engagement in cancer survivorship care., Results: A total of 634 participants completed questionnaires (48% male, mean age = 21.7 years). Most participants (79%) reported at least one cancer-related late effect, most commonly fatigue (40%) and memory/learning difficulties (34%). Brain tumor survivors reported a higher total number of late effects than survivors with other diagnoses (mean = 5.7 vs. 3.2, P < .001). Participants' most commonly reported motivators for engaging in care were to understand problems that may occur later in life because of their cancer and/or treatment (98.5%) and to get reassurance about one's health (97.4%). The proportion of survivors endorsing each motivating factor was similar across cancer diagnoses, with the exception of learning more about insurance and pensions (highest in brain tumor survivors = 80%). In multivariable analyses, survivors were more likely to report being engaged in survivorship care if they were younger (P < .001), less time had elapsed since their diagnosis (P < .001), or they reported a higher number of motivating factors (P = .016)., Conclusion: Survivors report a range of health problems decades after treatment completion. Understanding the burden of late effects, and motivators for seeking survivorship care to manage these health problems, is important for ensuring that tailored interventions or services are available to meet the needs of this growing population and to design effective models of survivorship care., (© The Author(s) 2023. Published by Oxford University Press.)

Background: An increasing number of children diagnosed with both low- and high-risk neuroblastoma are surviving. Yet, treatment can be intensive and often multimodal, especially for high-risk neuroblastoma, resulting in significant long-term health problems. We aimed to describe neuroblastoma survivors' pediatric hospitalizations, readmissions, and their associated costs., Method: We conducted a population-based study of all children (<18 years) residing in New South Wales (NSW), Australia, and hospitalized with a recorded diagnosis of neuroblastoma during 2001-2020. We used linked NSW Admitted Patient Data Collection and death registration data to examine the frequency, length of stay, and readmissions following the first admission when neuroblastoma was diagnosed (i.e., the index admission), and the associated hospitalization costs by age and timing postindex admission discharge., Results: In total, 300 children (64% aged <3 years) were hospitalized for neuroblastoma over the study period. The median number of readmissions and length of stay within 2 years postdischarge were 17 (interquartile range IQR: 5.5-25) and 45.5 (IQR: 10-125) days, and median cost per child was AUD$124,058 (IQR $34,217-$264,627). Following discharge from the index admission, there were 7088 readmissions (median: 20 per child, IQR: 7-29). Fifty-eight percent of readmissions occurred within 1-year postdischarge, primarily due to fever, nausea, abdominal pain, and respiratory conditions., Conclusion: The burden of health problems requiring hospitalization among neuroblastoma survivors results in significant associated healthcare costs, warranting further efforts to optimize health care for neuroblastoma survivors that focuses on early intervention and long-term monitoring., (© 2023 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Objective: Many survivors are disengaged from follow-up, mandating alternative models of survivorship-focused care for late effects surveillance. We explored survivors' barriers to accessing, and preferences for survivorship care., Methods: We invited Australian and New Zealand survivors of childhood cancer from three age groups: <16 years (represented by parents), 16-25 years (adolescent and young adults (AYAs)) and >25 years ('older survivors'). Participants completed questionnaires and optional interviews., Results: 633 survivors/parents completed questionnaires: 187 parents of young survivors (mean age: 12.4 years), 251 AYAs (mean age: 20.6 years) and 195 older survivors (mean age: 32.5 years). Quantitative data were complemented by 151 in-depth interviews. Most participants, across all age groups, preferred specialised follow-up (ie, involving oncologists, nurses or a multidisciplinary team; 86%-97%). Many (36%-58%) were unwilling to receive community-based follow-up. More parents (75%) than AYAs (58%) and older survivors (30%) were engaged in specialised follow-up. While follow-up engagement was significantly lower in older survivors, survivors' prevalence of late effects increased. Of those attending a follow-up clinic, 34%-56% were satisfied with their care, compared with 14%-15% of those not receiving cancer-focused care (p<0.001). Commonly reported barriers included lack of awareness about follow-up availability (67%), followed by logistical (65%), care-related beliefs (59%) and financial reasons (57%). Older survivors (p<0.001), living outside major cities (p=0.008), and who were further from diagnosis (p=0.014) reported a higher number of barriers., Conclusions: Understanding patient-reported barriers, and tailoring care to survivors' follow-up preferences, may improve engagement with care and ensure that the survivorship needs of this population are met., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: Childhood cancer survivorship care is a complex specialty, though it is increasingly being integrated into the general practitioner's (GP) remit. Establishing the essential components of tertiary- and primary-led care, to maximize the benefits and overcome the challenges inherent to each, is essential to inform the development of survivor-centered, sustainable care models., Methods: We used the qualitative principles of semi-structured interviewing, verbatim transcription, coding (supported by NVivo12) and thematic analysis, to collect and evaluate the views and preferences of pediatric oncologists, survivorship nurse coordinators, and GPs currently caring for childhood cancer survivors., Results: Seventy healthcare providers (19 oncology staff and 51 GPs) from 11 tertiary hospitals and 51 primary practices across Australia and New Zealand participated. Participants reported specialist expertise and holistic family-centered care as the key benefits of tertiary and primary care respectively. Participants reported that tertiary-led survivorship care was significantly challenged by a lack of dedicated funding and costs/travel burden incurred by the survivor, whereas primary-led survivorship care was challenged by insufficient GP training and GPs' reliance on oncologist-developed action plans to deliver guideline-based care. GPs also reported a need for ongoing access to survivorship expertise/consultants to support care decisions at critical times. The discharge of survivors into primary care limited late-effects data collection and the rapid implementation of novel research findings., Conclusions: Healthcare professionals report that while a risk-stratified, collaborative model of survivor-centered care is optimal, to be implemented successfully, greater provisions for the ongoing engagement of GPs and further access to GP education/training are needed., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 McLoone, Chen, Wakefield, Johnston, Bell, Thornton-Benko, Cohn and Signorelli.)

Objective: We assessed the acceptability of, and perceived benefits/barriers to, using Electronic health (eHealth) technology for childhood cancer survivorship care., Methods: We interviewed survivors, their parents, and their nominated GP. We described a hypothetical eHealth tool to manage survivorship care and asked their likely use of, and perceived benefits/concerns for, the use of the tool., Results: 31 survivors (mean age = 27.0), 29 parents (survivors' mean age = 12.6), and 51 GPs (mean years practising = 28.2) participated. Most survivors/parents (85%) and GPs (75%) indicated that they would be willing to use an eHealth tool. Survivors/parents reported that an eHealth tool would increase their confidence in their ability, and their GP's ability, to manage their survivorship care. GPs agreed that an eHealth tool would provide easier access to survivors' medical information and increase their capacity to provide support during survivorship. Some GPs (7%) and survivors (43%) reported being hesitant to use eHealth tools due to privacy/security concerns., Conclusion: Overall, eHealth tools appear acceptable and may help to improve the management of late effects for childhood cancer survivors and assist their GPs to coordinate their care., Innovation: Concerns raised by key stakeholders should be addressed in the design of eHealth technologies to optimise their uptake and effectiveness., Competing Interests: No author has any conflicts of interest to disclose in relation to this manuscript., (© 2021 The Author(s).)

Maximizing participation in cancer research is important to improve the validity and generalizability of research findings. We conducted a four-arm randomized controlled trial to test the impact of a novel video invitation on participant response. We invited childhood cancer survivors and parents of survivors <16 years to complete questionnaires. We compared response rates to an invitation letter (control) vs receiving the letter plus a video invitation on a flash drive presented by a childhood cancer survivor, a pediatric oncologist or a researcher. We explored factors associated with viewing the video and examined the impact of enclosing the USB on study costs. Overall 54% (634/1176) of questionnaires were returned. Participants who received a video invitation on a USB were more likely to return the questionnaire than those who did not (58% vs 47%, P < .001). Participation rate did not significantly differ by video presenter. Forty-seven percent of participants who received a USB reported watching the video, of whom 48% reported that the video influenced their decision to participate. Participants with a lower income (OR = 0.43, 95% CI = 0.25-0.74, P = .002) were more likely to report watching the video. Participants who received a video invitation required significantly fewer reminder calls than those who only received a written invitation (mean = 1.6 vs 1.1 calls, P < .001), resulting in a 25% recruitment cost-saving for the study. Adding a USB with a video study invitation to recruitment packages is a cost-effective way of improving study participation. This is important in an era of declining study participation and underrepresentation of vulnerable populations in research., (© 2020 Union for International Cancer Control.)

Background: Survivors of childhood cancer often experience treatment-related chronic health conditions. Survivorship care improves survivors' physical and mental health, yet many are disengaged from care. Innovative models of care are necessary to overcome patient-reported barriers to accessing survivorship care and to maximize survivors' health., Methods: We piloted a novel survivorship program, called "Re-engage," a distance-delivered, nurse-led intervention aiming to engage, educate, and empower survivors not receiving any cancer-related care. Re-engage involves a nurse-led consultation delivered via telephone/online to establish survivors' medical history and needs. Participants completed questionnaires at baseline, 1 month postintervention, and 6-month follow-up., Results: A total of 27 survivors who had not accessed survivorship care in the last 2 years participated (median age, 31 years; interquartile range [IQR], 27-39 years); of which, 82% were at high-risk for treatment-related complications. Participation in Re-engage was high (75%) and there was no attrition once survivors enrolled. At 1 month postintervention, 92% of survivors reported that Re-engage was "beneficial," which all survivors reported at 6-month follow-up. Survivors' overall satisfaction with their care increased from 52% before Re-engage to 84% at 1 month postintervention. Survivors' mean self-efficacy scores remained similar from baseline to 1 month postintervention (b = -0.33, 95% CI, -1.31 to 0.65), but increased significantly from baseline to 6-month follow-up (b = 1.64, 95% CI, 0.28-3.00). At 6-month follow-up, 73% of survivors showed an increase in health-related self-efficacy compared with baseline., Conclusions: Re-engage is a highly acceptable and feasible intervention and promotes health-related self-efficacy, which is integral to survivors being advocates for their own health. Further empirical work is needed to evaluate the long-term efficacy of Re-engage., Trial Registration: ACTRN12618000194268.

Purpose: Survivors of pediatric cancer are prone to late effects which require ongoing medical care. Young adult survivors often transition from specialist pediatric care to adult-oriented or community-based healthcare. This study aims to describe the attitudes and experiences of survivors and their parents towards transition barriers and enablers., Methods: Long-term survivors and parents (of survivors < 16 years) were recruited from 11 hospitals in Australia and New Zealand to participate in a semi-structured telephone interview regarding their transition experiences. Transcribed interviews were coded and content analysis was used to number participants within themes., Results: Thirty-three participants were interviewed, of which 18 were survivors (mean age 26 years, SD = 6.3; mean time since treatment completion 13.3 years, SD = 6.1) and 15 were parents (mean survivor age 15 years, SD = 1.9; mean time since treatment completion 8.4 years, SD = 2.8). Participants described their transition attitudes as positive (55%), neutral (15%), or negative (30%). Key barriers to transition included dependence on pediatric healthcare providers, less confidence in primary care physicians (PCPs), inadequate communication, and cognitive difficulty. Enablers included confidence in and proximity to physicians, good communication, information, independence, and age., Conclusions: Many survivors face barriers to their transition out of pediatric care. Early introduction to transition, greater collaboration between healthcare professionals, and better information provision to survivors may improve the transition process. Future research of survivors' experience of barriers/enablers to transition is needed. Development of interventions, such as those that address self-management skills, is required to facilitate transition and encourage long-term engagement.

Background: Primary care physicians (PCPs) are essential for healthcare delivery but can be difficult to recruit to health research. Low response rates may impact the quality and value of data collected. This paper outlines participant and study design factors associated with increased response rates among PCPs invited to participate in a qualitative study at Sydney Children's Hospital, Australia., Procedure: We invited 160 PCPs by post, who were nominated by their childhood cancer patients in a survey study. We followed-up by telephone, email, or fax 2 weeks later., Results: Without any follow-up, 32 PCPs opted in to the study. With follow-up, a further 42 PCPs opted in, with email appearing to be the most effective method, yielding a total of 74 PCPs opting in (46.3%). We reached data saturation after 51 interviews. On average, it took 34.6 days from mail-out to interview completion. Nonrespondents were more likely to be male (P = 0.013). No survivor-related factors significantly influenced PCPs' likelihood of participating. Almost double the number of interviews were successfully completed if scheduled via email versus phone. Those requiring no follow-up did not differ significantly to late respondents in demographic/survivor-related characteristics., Conclusion: PCP factors associated with higher opt in rates, and early responses, may be of interest to others considering engaging PCPs and/or their patients in cancer-related research, particularly qualitative or mixed-methods studies. Study resources may be best allocated to email follow-up, incentives, and personalization of study documents linking PCPs to patients. These efforts may improve PCP participation and the representativeness of study findings., (© 2017 Wiley Periodicals, Inc.)

Aim: Childhood cancer survivors remain at risk of developing life-altering and/or life-threatening health conditions following the completion of curative treatment. However, no uniform model of care for childhood cancer survivors exists in Australia and New Zealand (ANZ). This study reports on current childhood cancer survivorship care in ANZ, highlighting the challenges childhood cancer survivor long-term follow-up (LTFU) clinics face., Methods: We conducted semistructured, telephone interviews with the pediatric medical director and clinical nurse consultant from all 11 LTFU clinics at tertiary referral pediatric oncology units across ANZ (n = 19; 100% response rate). Data were analyzed using NVivo10., Results: Participants unanimously identified limited options for transitioning older survivors out of pediatrics and inadequate funding as central challenges to the provision of best-practice LTFU care. There is duplication of resource development between clinics (e.g. survivorship care plan templates and clinic systems). Although participants recognized an overly prescriptive model of LTFU care as potentially unfeasible, the majority endorsed a national, or even bi-national, model of care that could be tailored to meet the needs of their local environment., Conclusion: The lack of an accepted model of optimal childhood cancer survivorship care across ANZ prevents the synergistic development of survivorship guidelines, survivorship care plans, transition pathways, information technology solutions, funding streams and late effects data consortiums. Sufficient resources to facilitate growth may be difficult to secure if approached by individual centers rather than via a national, cooperative effort. Improved solutions are urgently needed for transitioning survivors to appropriate care beyond the pediatric age., (© 2017 John Wiley & Sons Australia, Ltd.)

Objectives: Childhood cancer survivors are at risk of developing late treatment-related complications. In response, many hospitals worldwide have established follow-up clinics to monitor survivors as they age. However, there is limited evidence of the efficacy of these clinics in meeting the lifelong healthcare needs of survivors. In this review we collated evidence of the measurable impact of engagement in specialized survivorship care, on survivors' medical and psychosocial outcomes., Design: We conducted a systematic review according to PRISMA guidelines, and assessed the quality of included studies using 'QualSyst'., Data Sources: We screened 641 abstracts in Medline, Embase and CINAHL, yielding 9 eligible articles (N=5135 survivors)., Eligibility Criteria for Selecting Studies: Articles were eligible if: participants were diagnosed with cancer prior to the age of 21; participants were classified as 'survivors' of childhood or adolescent cancer, usually defined as 5 years from diagnosis or 2 years from the end of treatment; studies evaluated the impact of engagement in long term follow-up (LTFU) care on medical, psychosocial or other outcomes in pediatric cancer survivors., Results: One article evaluated primary care physician-led follow-up and the remainder evaluated specialized survivorship clinics. Survivors attending follow-up care tended to demonstrate higher knowledge about their treatment and diagnosis (n=2), and had more accurate late effects risk perception (n=3). Attendees also engaged in increased more regular surveillance, had fewer emergency department visits/hospitalizations (n=1), and more late effects detected (n=3), than non-attendees., Conclusions: There is a dearth of literature systematically evaluating the medical and psychosocial impact of follow-up care. Research suggests however, survivors engaged in follow-up care have better health and educational outcomes, highlighting the need for lifelong survivorship care and ongoing late effects education for survivors. Recalling survivors who become disengaged with follow-up care is also valuable, as their risk of treatment-related complications rises with age. Further systematic evaluation is urgently needed., (Copyright © 2017 Elsevier B.V. All rights reserved.)

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., (Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.)

Background: As survival rates improve, cancer is increasingly considered a chronic illness associated with significant long-term burden and sequelae, both physical and psychological. Various models of cancer care, including primary care physician (PCP)-led and shared-care, have been proposed, though a systematic review of PCPs' perspectives of their role and challenges in providing cancer care remains lacking. This systematic review summarises available literature on PCPs' perspectives of their role in cancer care., Methods: Five databases (MEDLINE, MEDLINE In-Process, EMBASE, PsycINFO and CINAHL) were systematically searched using keywords and MeSH headings for articles from 1993-2015 exploring PCPs' views of their role in the care of patients/survivors of both child and adult cancers. Two independent reviewers screened abstracts for full-text review, abstracted data and performed a quality assessment., Results: Thirty-five articles representing the perspectives of 10,941 PCPs were captured. PCPs' confidence to provide care varied according to cancer phase (e.g. treatment versus survivorship), care domain (e.g. acute medical care versus psychological late effects), and disease prevalence (e.g. breast malignancies versus childhood cancers), with preferences for shared- versus independent-care models varying accordingly. Barriers included a lack of timely and specific information/communication from oncologists and limited knowledge/lack of guidelines, as well as lack of time, remuneration and patient trust., Limitations: The data was limited by a lack of consideration of the preferences of patients and oncologists, leading to uncertainty about the acceptability and feasibility of suggested changes to cancer care., Discussion: PCPs appear willing to provide cancer care for patients/survivors; however, they report barriers and unmet needs related to providing such care. Future research/interventions should take into account the preferences and needs of PCPs., Competing Interests: Compliance with Ethical Standards Funding This study was funded by the Kids Cancer Alliance, which is supported by a translational research grant from the Cancer Institute of NSW. Claire Wakefield is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1067501). The Behavioural Sciences Unit is supported by the Kids with Cancer Foundation. Study sponsors did not have any input into the study design, data collection or analysis, report composition or editing, or publication decisions. Conflict of interest statement The authors declare that they do not have a conflict of interest.

Cancer diagnoses and treatment may have long-term effects on fertility. Semistructured interviews were administered to young cancer survivors (<20 years) and their parents (n = 97). Fertility related concerns were reported by 45 participants (46.4%). Themes included: distress regarding potential infertility; the effect of infertility on future relationships, self-esteem, and miscommunications/confusion about fertility status; access to fertility testing; and preservation options. Parents also reported challenges regarding how and when it was developmentally appropriate to talk to their children about fertility. The development of comprehensive consumer-driven approaches to managing the fertility concerns of young survivors and their families is essential.

Purpose: This review assessed the psychological impact that acquiring personal and familial genetic information has on children. We also examined the concordance between the available empirical data and clinical guidance/perspectives articles., Methods: We screened 591 abstracts and identified 13 studies, representing 966 children. Ten studies assessed 386 children tested for familial adenomatous polyposis (n = 171), hereditary cardiac disease (n = 134), and other conditions (n = 81). Three studies addressed the impact of BRCA1/2 testing of a family member on 580 children., Results: Serious adverse psychological outcomes were uncommon. Most studies reported no significant increase in mean anxiety, depression, and distress scores (n = 8, 61.5%); however, some children experienced intrafamilial distress, discrimination, and guilt/regret. Some children were more concerned about their own health or their family members' health. There was limited consistency between anticipated adverse impact and empirical data., Conclusions: The review identified little conclusive evidence of deleterious psychological consequences for children acquiring genetic information. However, there is a lack of data regarding genetic testing for conditions that may not be treatable/modifiable, as well as a dearth of longitudinal studies. Therefore, clinical caution remains essential for the ethical integration of genetic testing into pediatrics. Further research assessing the potential positive and negative effects of genetic testing in childhood is warranted.Genet Med 18 8, 755-762.

Objective: There are few support programs with evidence-based practices which address the needs of cancer survivors from indigenous populations. This systematic review analysed the experiences and current support services for cancer survivors from indigenous populations following the cessation of cancer treatment., Methods: The data sourced for this article was identified from a systematic search of five databases (MEDLINE, MEDLINE In-Process, PyscINFO, CINAHL, and EMBASE). Studies were selected if they described the experiences of indigenous cancer survivors, their families, and/or clinicians primarily responsible for their care. In total 208 unique abstracts were screened, from which 17 studies were identified as having fulfilled all selection criteria., Results: Of the 17 articles reviewed, 12 described qualitative data and 5 provided quantitative data. Common themes identified included the importance of family support throughout the survivorship period, the negative effect of community stigmatization, fatalistic attitudes towards cancer, and the importance of spirituality in coping with, and understanding, the cancer experience. Potential barriers to accessing care included distance and difficulties revisiting the survivor's cancer experience due to an associated fear of cancer recurrence., Conclusions: Indigenous cancer survivors would benefit from survivorship programs more specifically tailored to their individual circumstances, such as personalized spiritual care, facilitation of increased involvement of family members, and connection to other indigenous cancer survivors., Implications for Cancer Survivors: The results from this review indicate that there is a need for survivorship care to be shaped specifically for the needs of indigenous cancer survivors.

Research exploring the needs of families of childhood cancer survivors is critical to improving the experiences of future families faced by this disease. However, there are numerous challenges in conducting research with this unique population, including a relatively high mortality rate. In recognition that research with cancer survivors is a relational activity, this article presents a series of cases of parents bereaved by childhood cancer who unintentionally received invitations to participate in survivorship research. We explore six ethical considerations, and compare our experiences with that described previously. Our considerations include the sharing of confidential information with external parties to confirm past patients' vital status and appropriate researcher responses to bereaved parents. The management of researchers' emotional safety when working with illness populations and the fact that study invitations can elicit grief responses in non-bereaved families are discussed. To conclude, we argue for the benefits of inviting bereaved parents whose children died after treatment completion in survivorship research. Such parents' early survivorship experiences will otherwise be systemically neglected. We argue that discussing complex cases can assist researchers to protect participants' and researchers' emotional well-being. We hope to contribute to the dearth of discussion about research operating procedures to address these issues.

Background: Diagnostic delays may not have significant prognostic implications in paediatric oncology, but psychological impacts remain understudied., Methods: Interviews exploring diagnostic experiences were conducted with childhood cancer survivors (n=19), parents (n=78) and siblings (n=15)., Results: Median diagnostic time was 3 weeks. Participants described a mixture of rapid diagnoses (28.9%), plus delayed appraisal intervals (that is, parent- or patient-associated diagnostic delays; 40.0%) and diagnostic intervals (that is, healthcare-associated delays; 46.7%). Families experiencing delays described guilt and anger and deleterious impacts on the family-clinician relationship. Some believed delays impacted on treatment and prognosis., Conclusions: The effect of the diagnostic experience can be considerable.

Objective: For families under stress, positive grandparental relationships provide a valued 'safety net'. However, coping with family stressors can place a heavy burden on older individuals who may be experiencing declining health/energy themselves. This mixed-methods study assessed the prevalence of distress in grandparents of children with, and without, cancer, aiming to identify predictors of grandparental distress and quantify their barriers to care., Methods: Two hundred twenty-one grandparents [87 cancer group; 134 controls; mean age 65.47 years (SD = 6.97); 33.5% male] completed self-report questionnaires assessing distress, anxiety, depression, anger, 'need for help', support use, and barriers to psychosocial care., Results: A higher proportion of grandparents in the cancer group reported clinically relevant distress (32.9% vs. 12.7%; p < 0.001), anxiety (48.8% vs. 23.9%; p < 0.001), depression (24.4% vs. 6.0%; p < 0.001), and anger (23.5% vs. 6.8%; p = 0.001). In the cancer group, distress was higher in grandmothers and in families with fewer siblings. Grandparents rarely accessed evidence-based psychosocial support (<5% in both groups), although grandparents of children with cancer were more likely to seek religious/spiritual support. Barriers to help seeking included lack of knowledge and rurality. Grandparents of children with cancer qualitatively described undisclosed feelings of uncertainty and helplessness and provided advice to other grandparents to facilitate their coping., Conclusions: Grandparents of children with cancer were clearly more distressed than controls. Grandparents' capacity to support their families may be limited by their own, untreated, distress., (Copyright © 2014 John Wiley & Sons, Ltd.)

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., (© 2014 Public Health Association of Australia.)

Objective: To determine the information needs and preferences of grandparents of children with cancer, to identify clinically useful predictors of high information need, and to develop the first validated scale to assess grandparents' information needs regarding their grandchild's cancer., Methods: Grandparents of children with cancer completed a questionnaire, including a newly developed instrument to measure information needs., Results: Eighty-seven grandparents participated (mean age 65.02 years, range 46-81, 31% male). Grandparents' information needs were high, especially among young and paternal grandparents. Grandparents' greatest need was for information pertaining to their grandchild's chance of survival (81.6% reported "high need"), possible consequences of the child's cancer (81.6%), and phases of their treatment (72.4%). Ninety-three percent endorsed the development of a grandparents' booklet, distributed at diagnosis and available online., Conclusions: Grandparents of children with cancer desire more information for their own reassurance, to reduce their reliance on 'second-hand' information from their grandchild's parents and to improve the support they provide their families. Grandparents strongly endorse the development of grandparent-targeted educational resources., Practice Implications: Administration of this short, 15-item questionnaire can help staff identify the information needs of grandparents. Findings will inform the development of evidence-based resources for this important (but oft-neglected) population., (Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.)

Few studies have evaluated the impact of childhood cancer on parents' occupational/financial status. This study explored parents' occupational/financial experiences posttreatment. Semistructured interviews were administered to 78 parents (44 mothers) of childhood cancer survivors diagnosed in the preceding 5 years. Transcripts were organized into themes using QSR NVivo8. Parents reported familial, psychological, and practical factors affecting their ability to return to work. Prioritizing family, reinstigating career progression, and negative workplace attitudes were particularly challenging. Parents of children with cancer experience substantial work-family conflict after their child's physical recovery from cancer. Family friendly policies and further research are recommended.

Background: Providing ongoing clinical care that adequately addresses patients' medical, psychosocial and information needs is challenging, particularly for patient groups at increased risk of developing life-threatening disease such as malignant melanoma. This study examined a model of clinical care developed by the High Risk Clinic (HRC) of the Sydney Melanoma Diagnostic Centre in relation to patient satisfaction., Methods: Semi-structured telephone interviews were conducted and analyzed using the framework of Miles and Huberman, and themes were organized using the qualitative software package, QSR NVivo8., Results: Twenty HRC patients participated in the study (nine men, 11 women; mean age 57.6 years, age range 34-74 years; response rate 91%). Satisfaction with clinical care at the HRC was high. Factors contributing to patient satisfaction included: rapid and regular access to physicians who were perceived by participants as experts, the development of confidence and trust in one's treating doctor, and a sense of being cared about and understood by one's healthcare team. Although one-third of the participants reported some inconveniences in attending the clinic, these were viewed as minor difficulties and not significant barriers to care. Formal psychological support was not sought or expected by participants, although many expressed long-standing melanoma-related fears and concerns., Conclusions: Accessible, expert medical attention, delivered in a patient-centered manner was integral to melanoma survivors' satisfaction with clinical management. Appropriate referrals to psychological support may further increase satisfaction with clinical care., (Copyright © 2013 John Wiley & Sons, Ltd.)