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Digital solutions have been reported to provide positive psychological and social outcomes to childhood critical illness survivors, a group with an increased risk for long-term adverse psychosocial effects.

Purpose: Long-term follow-up (LTFU) care for childhood cancer survivors (CCSs) is essential to improve and maintain their quality of life. The Survivorship Passport (SurPass) is a digital tool which can aid in the delivery of adequate LTFU care. During the European PanCareSurPass (PCSP) project, the SurPass v2.0 will be implemented and evaluated at six LTFU care clinics in Austria, Belgium, Germany, Italy, Lithuania and Spain. We aimed to identify barriers and facilitators to the implementation of the SurPass v2.0 with regard to the care process as well as ethical, legal, social and economical aspects. Methods: An online, semi-structured survey was distributed to 75 stakeholders (LTFU care providers, LTFU care program managers and CCSs) affiliated with one of the six centres. Barriers and facilitators identified in four centres or more were defined as main contextual factors influencing implementation of SurPass v2.0. Results: Fifty-four barriers and 50 facilitators were identified. Among the main barriers were a lack of time and (financial) resources, gaps in knowledge concerning ethical and legal issues and a potential increase in health-related anxiety in CCSs upon receiving a SurPass. Main facilitators included institutions' access to electronic medical records, as well as previous experience with SurPass or similar tools. Conclusions: We provided an overview of contextual factors that may influence SurPass implementation. Solutions should be found to overcome barriers and ensure effective implementation of SurPass v2.0 into routine clinical care. Implications for Cancer Survivors: These findings will be used to inform on an implementation strategy tailored for the six centres. [ABSTRACT FROM AUTHOR]

Purpose: Childhood cancer affects approximately 2000 children annually in Germany, and there is an increasing number of long‐term childhood cancer survivors. Due to developmental tasks, adolescent survivors in long‐term follow‐up (LTFU) care may face specific challenges and perceive different burden due to their disease. The current study explored (a) the impact of cancer and burden regarding survivorship and (b) supportive needs of adolescent childhood cancer survivors in LTFU care. Methods: Semistructured qualitative interviews were conducted with 18 adolescent childhood cancer survivors in LTFU care aged 14–18 years (average age 16.4 years). Interviews were transcribed verbatim and analysed using content analysis. Results: Based on the exploratory research questions, two key categories were generated: (1) The impact and burden on survivors' lives during LTFU care and (2) support needs of adolescent childhood cancer survivors in LTFU care. The four subcategories that emerged regarding the impact and burden on survivors' lives during LTFU care were (1) physical consequences, (2) cognitive impairments, (3) difficulties in social interactions, and (4) psychosocial burden. Additionally, two subcategories, (1) practical and (2) emotional support needs of adolescent childhood cancer survivors were identified. Conclusions: Our results indicate that childhood cancer influences adolescent survivors' life in a negative way even many years after the end of treatment. Furthermore, parents seem to play a crucial role in the survivorship experience of childhood cancer survivors, as they remain keep responsible for most cancer‐related concerns even during LTFU care, causing adolescents to persist in the child role. A family systemic approach to care is suggested to facilitate development‐specific tasks and to enable adolescents to become autonomous adults. Still, the question remains as to who in the health care system could take over the family systemic tasks. [ABSTRACT FROM AUTHOR]

Background: Having sufficient knowledge of cancer diagnosis, treatment and late effects in survivors of childhood, adolescent, and young adult (CAYA) cancer is important for effective self-management and optimising health outcomes. Therefore, in collaboration with different stakeholders, the PanCare PLAIN Information Group converted the PanCareFollowUp Recommendations for late effects surveillance into information summaries that are Person-centred, written in Lay language, Accessible, Internationally relevant, and Navigable (PLAIN). Methods: The PanCare PLAIN Information Group, comprising 21 stakeholders from seven European countries, collaborated to provide concise information for survivors and their families. The aim was to deliver PLAIN summaries that are clear and accessible for the majority of survivors, while providing links to additional sources of information. The PLAIN summaries were drafted by the PanCare PLAIN Information Group and subjected to two internal and one external consultation round, the latter involving experts, CAYA cancer survivors and parents/caregivers. Results: In total, 45 PLAIN summaries were developed, each corresponding to one of the PanCareFollowUp Recommendations for late effects surveillance. The summaries provide information about late effects, personal health risks, important symptoms and signs, recommended surveillance strategies, possible referral and treatment options, and self-care. Conclusions: The PLAIN summaries are meant to increase knowledge in survivors and their families, while they may also inform healthcare professionals. Along with their translations, the PLAIN summaries will be made freely available on the PanCare website, with a link provided on the European Network of Youth Cancer Survivors information platform. In addition, they will become and integral part of the Survivorship Passport.

Pneumococcal diseases are one of the most important infectious complications in the late period following allogeneic hematopoietic stem cell transplantation (allo-HSCT). The importance of long-term follow-up care is increasing, as the number of long-term survivors following allo-HSCT increases, but there has been a dearth of research specifically focusing on pneumococcal diseases during the late post-transplant period (day >100). Using a transplant registry database between January 1, 2001 and December 31, 2011, we aimed to assess the clinical spectrum and risk factors for pneumococcal diseases in the late post-transplant period. Among the 22,514 recipients who received allo-HSCT over an 11-year period and could be followed for ≥100 days, 43 patients developed 49 episodes of pneumococcal diseases. Six of the 43 patients died from pneumococcal diseases, and four of these six patients died within a week, despite having undergone allo-HSCT two or more years ago. A history of chronic graft-versus-host disease (odds ratio [OR], 2.31; 95% confidence interval [CI], 1.15–4.66; P = 0.02), viral infection (OR, 3.38; 95% CI, 1.70–6.72; P < 0.01), and complete remission of the underlying disease at the time of transplantation (OR, 2.38; 95%CI, 1.10–5.14; P = 0.03) were identified as risk factors. Given the risk of sudden death and the high mortality rate, attention should be paid to pneumococcal diseases in providing long-term follow-up care, even several years after allo-HSCT. [ABSTRACT FROM AUTHOR]

Purpose: Long-term follow-up (LTFU) care is essential to optimise health outcomes in childhood cancer survivors (CCS). We aimed to assess the impact of the COVID-19 pandemic on LTFU services and providers.Methods: A COVID-19 working group within the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) distributed a questionnaire to LTFU service providers in 37 countries across Europe, Asia, North America, Central/South America, and Australia. The questionnaire assessed how care delivery methods changed during the pandemic and respondents' level of worry about the pandemic's impact on LTFU care delivery, their finances, their health, and that of their family and friends.Results: Among 226 institutions, providers from 178 (79%) responded. Shortly after the initial outbreak, 42% of LTFU clinics closed. Restrictions during the pandemic resulted in fewer in-person consultations and an increased use of telemedicine, telephone, and email consultations. The use of a risk assessment to prioritise the method of LTFU consultation for individual CCS increased from 12 to 47%. While respondents anticipated in-person consultations to remain the primary method for LTFU service delivery, they expected significantly increased use of telemedicine and telephone consultations after the pandemic. On average, respondents reported highest levels of worry about psychosocial well-being of survivors.Conclusions: The pandemic necessitated changes in LTFU service delivery, including greater use of virtual LTFU care and risk-stratification to identify CCS that need in-person evaluations.Implications For Cancer Survivors: Increased utilisation of virtual LTFU care and risk stratification is likely to persist post-pandemic. [ABSTRACT FROM AUTHOR]

Objective: The aim of this study was to explore adolescent survivors' views and expectations about long‐term follow‐up care. Methods: Semi‐structured, in‐depth interviews were conducted with 16 adolescent survivors of childhood acute lymphoblastic leukaemia. Survivors who had completed treatment at least 2 years ago were involved in the study. Interviews were audio‐recorded and transcribed verbatim. An inductive thematic approach was used to analyse the data. Results: Four main themes and sub‐themes were identified from the analysis as follows: information needs with three sub‐themes 'long‐term follow‐up, healthy life and social life', support needs with three sub‐themes 'psychosocial (peer relations etc.), school related and social–emotional (fear of relapse, body image, self‐esteem, etc.)', perceived benefits with two sub‐themes 'social–emotional and related to long‐term follow‐up' and perceived barriers 'medical‐hospital related and social life'. Conclusions: Adolescent survivors mainly need support in terms of psychosocial aspects: self‐esteem–body image, school, peer relations and social activities during follow‐up. Identified barriers related to follow‐up were school absence and not able to participate social activities. Adolescents specify health promotion approaches as benefits aspects of follow‐up. The findings of this study will guide nurses in the long‐term follow‐up care of adolescent survivors of acute lymphoblastic leukaemia and provide an opportunity to plan individualised follow‐up care. [ABSTRACT FROM AUTHOR]

Background: Childhood cancer survivors require lifelong risk-based follow-up care. It should be noted that less than one-third of adult survivors of childhood cancer report any survivor-focused care, and fewer than 1 in 5 obtain risk-based follow-up care. It is thought that this may be due to inadequate transition readiness, including low levels of knowledge, skills, motivation, and resources to make the transition to independent self-management of follow-up care. Interventions that focus specifically on improving the transition from parent-managed to self-managed care are needed. Theory and prior research suggest that targeting self-management skills and using peer mentoring may be innovative strategies to improve transition readiness. Objective: This study aims to identify the content of a self-management intervention to improve transition readiness among adolescent and young adult (AYA) survivors. Methods: Intervention development occurred in 3 stages: formative research with AYA survivors to identify barriers and facilitators to obtaining risk-based survivorship care, content development using feedback from multiple stakeholders (AYA survivors, parents, and providers), and content refinement (usability testing) of the initial proposed educational modules for the program. Content analysis, guided by the social-ecological model of AYA readiness for transition, was used to identify themes and develop and refine the content for the intervention. Results: A total of 19 AYA survivors participated in the formative research stage, and 10 AYA survivors, parents, and health care providers participated in the content development and refinement stages. The major barrier and facilitator themes identified included knowledge of cancer history and risks; relationships with health care providers; relationships with family members involved in care; emotions about health, follow-up care, and transfer of care; and lifestyle behaviors and life transitions. These themes were translated into 5 self-management modules: understanding treatment history and the survivorship care plan, managing health care logistics and insurance, communicating with health care providers and family members involved in care, dealing with emotions, and staying healthy in the context of life transitions. Feedback from the key stakeholders indicated that the content was relevant but should include participative elements (videos and tailored feedback) to make the intervention more engaging. The AYA survivors were receptive to the idea of working with a peer mentor and expressed a preference for using SMS text messaging, telephone calls, or videoconference to communicate with their mentor. Conclusions: Incorporating AYA survivors, parents, and providers in the design was essential to developing the content of a self-management and peer-mentoring intervention. AYA survivors confirmed the important targets for the intervention and facilitated design decisions in line with our target users' preferences. The next step will be to conduct a single-arm trial to determine the feasibility and acceptability of the proposed intervention among AYA survivors of childhood cancer. [ABSTRACT FROM AUTHOR]

Purpose: The main objective of this study was to identify the facilitators of and barriers to the transition from pediatric to adult care for adolescents and young adults (AYAs) with cancer according to physicians and nurses working in oncology. The secondary objectives were (1) to explore the viewpoints of health care professionals (HCPs) on this transition and (2) to discover HCP's needs and the needs they perceive among AYAs and their parents. Methods: Semistructured interviews were conducted with 19 HCPs to discover their experiences with pediatric to adult care transitions. Thematic analysis was then conducted. Results: Participants reported that transitioning is a complex process influenced by numerous barriers and facilitators, which can be classified into four themes: (1) balancing the needs and relationships of the three actors involved in the transition process, (2) factors that enable HCPs to determine the ideal time for transitions, (3) institutional and organizational barriers and facilitators that challenge HCPs, and (4) HCPs' reflections on defining and improving the transition process. Conclusion: Beyond the lack of human and financial resources, which hinders the structuring of transitions, our results suggest the need for a paradigm shift. That is, the position given to AYAs in pediatrics before the transition needs to evolve so that they are gradually positioned at the center of the relationship with HCPs and, therefore, are the focus of care and the transition process. This will enable them to acquire the skills, knowledge, and autonomy needed for a successful transition to adult care.

Purpose: With increasing numbers of childhood cancer survivors (CCS), it is important to identify the impact of cancer and CCS' needs for support services that can mitigate the long-term impact on psychosocial wellbeing, including health-related quality of life (HRQOL). We aimed (1) to describe survivors' wellbeing, impact of cancer, and supportive care needs and (2) to determine how socio-demographic or clinical characteristics and impact of cancer relate to survivors' unmet needs. Method: In this mixed methods study, a quantitative survey was used to assess HRQOL, psychological distress, impact of cancer, and supportive care needs. Qualitative interviews were conducted to explore the meaning of wellbeing, health, and impact of cancer. Results: Overall, 69 CCS participated in the survey of which 28 participated in qualitative interviews (aged ≥ 18 years, diagnosed with cancer ≤ 18 years). Few CCS (13%) reported poor physical HRQOL, but almost half reported poor mental HRQOL (49%) and psychological distress (42%). Health was considered to encompass both: physical and emotional aspects of wellbeing. Cancer positively impacted CCS' ability to care and attitude towards life, whereas relationships and insurance were negatively impacted. Risks for unmet needs increased in CCS with self-reported low health status, late effects, psychological distress, with older age at study or longer time since end of treatment. Conclusion: In our study, many CCS experienced various psychosocial, psychological and informational unmet needs, indicating that survivors' needs are currently not duly addressed. Current efforts to provide supportive psychosocial care in Switzerland should be further operationalized to provide adequate support. [ABSTRACT FROM AUTHOR]

Childhood cancer survivors (CCS), of whom there are about 500,000 living in Europe, are at an increased risk of developing health problems [1–6] and require lifelong Survivorship Care. There are information and knowledge gaps among CCS and healthcare providers (HCPs) about requirements for Survivorship Care [7–9] that can be addressed by the Survivorship Passport (SurPass), a digital tool providing CCS and HCPs with a comprehensive summary of past treatment and tailored recommendations for Survivorship Care. The potential of the SurPass to improve person-centred Survivorship Care has been demonstrated previously [10,11]. The EU-funded PanCareSurPass project will develop an updated version (v2.0) of the SurPass allowing for semi-automated data entry and implement it in six European countries (Austria, Belgium, Germany, Italy, Lithuania and Spain), representative of three infrastructure healthcare scenarios typically found in Europe. The implementation study will investigate the impact on person-centred care, as well as costs and processes of scaling up the SurPass. Interoperability between electronic health record systems and SurPass v2.0 will be addressed using the Health Level Seven (HL7) International interoperability standards. PanCareSurPass will deliver an interoperable digital SurPass with comprehensive evidence on person-centred outcomes, technical feasibility and health economics impacts. An Implementation Toolkit will be developed and freely shared to promote and support the future implementation of SurPass across Europe. PanCareSurPass is a novel European collaboration that will improve person-centred Survivorship Care for CCS across Europe through a robust assessment of the implementation of SurPass v2.0 in different healthcare settings. • SurPass addressing knowledge gaps regarding Survivorship Care requirements. • SurPass v2.0 will improve person-centred Survivorship Care for CCS across Europe. • SurPass v2.0 as an interoperable digital tool. • Generating evidence on person-centred outcomes, feasibility and health economics. • Promoting uptake of the SurPass via freely available Implementation Toolkit. [ABSTRACT FROM AUTHOR]

Long-term follow-up (LTFU) care, although endorsed, is not available for the majority of adult survivors of childhood, adolescence and young adult (CAYA) cancer. Barriers to implementation include lack of time, knowledge, personnel and funding. Sustainable solutions are urgently needed to address the needs of CAYA cancer survivors to improve the quality of life and reduce the burden of late effects on survivors, health care systems and society. The European Union–funded PanCareFollowUp project, initiated by the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer, was established to facilitate the implementation of person-centred survivorship care across Europe. The PanCareFollowUp Care Intervention was co-developed with survivors as part of the PanCareFollowUp project. It is a person-centred approach to survivorship care, supported by guidelines and with flexibility to adapt to local health care settings. The Care Intervention consists of three steps: (1) previsit completion of a Survivor Questionnaire (by the survivor) and Treatment Summary (by the health care provider [HCP]), (2) a clinic visit including shared decision-making, and (3) a follow-up call to finalise the individualised Survivorship Care Plan. We developed the key components of the PanCareFollowUp Care Intervention : a PanCareFollowUp Survivor Questionnaire , Treatment Summary template, Survivorship Care Plan template, and educational materials for HCPs and survivors. Wide implementation of the PanCareFollowUp Care Intervention will be supported with a freely distributed Replication Manual on completion of the PanCareFollowUp project. The PanCareFollowUp Care Intervention will support the implementation of person-centred, guideline-based LTFU care in different health care settings across Europe to improve survivors' health and well-being. • Long-term follow-up care is essential for the health of childhood cancer survivors. • PanCareFollowUp Care Intervention is suitable for all health care systems. • Treatment summary, Survivorship Care Plan, recommendations and health information. • Evaluation of feasibility and effectiveness of Care Intervention in four European countries. • Replication manual for implementation at institutions will be available postproject. [ABSTRACT FROM AUTHOR]

Purpose: The successful transition of childhood cancer survivors from pediatric- to adult-focused long-term follow-up care is crucial and can be a critical period. Knowledge of current transition practices, especially regarding barriers and facilitators perceived by survivors and health care professionals, is important to develop sustainable transition processes and implement them into daily clinical practice. We performed a systematic review with the aim of assessing transition practices, readiness tools, and barriers and facilitators. Methods: We searched three databases (PubMed, Embase/Ovid, CINAHL) and included studies published between January 2000 and January 2020. We performed this review according to the PRISMA guidelines and registered the study protocol on PROSPERO; two reviewers independently extracted the content of the included studies. Results: We included 26 studies: six studies described current transition practices, six assessed transition readiness tools, and 15 assessed barriers and facilitators to transition. Conclusion: The current literature describing transition practices is limited and overlooks adherence to follow-up care as a surrogate marker of transition success. However, the literature provides deep insight into barriers and facilitators to transition and theoretical considerations for the assessment of transition readiness. We showed that knowledge and education are key facilitators to transition that should be integrated into transition practices tailored to the individual needs of each survivor and the possibilities and limitations of each country's health care system. Implications for Cancer Survivors: The current knowledge on barriers and facilitators on transition should be implemented in clinical practice to support sustainable transition processes. [ABSTRACT FROM AUTHOR]

Summary: Purpose: Good news: Survival rates in childhood cancer have increased from 20% up to over 80% in Europe, depending on cancer type and country. Not so good news: This great success comes with the price that up to 60 to 70% of childhood cancer survivors suffer from cancer- and treatment-related long-term effects that need life-long follow-up care. Bad news: transition from paediatric health care to adult health care still poses a great problem for childhood cancer survivors due to the lack of adequate long-term care structures for adult survivors of childhood cancer. Patients and methods: Ongoing initiatives and projects driven forward jointly by survivors, parents and health care professionals tackle this gap: Childhood Cancer International Europe (CCI-E) and its Survivors Network (CCI-ESN), the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer (PanCare) and the European Society for Paediatric Oncology (SIOP Europe) are working on and advocating for better long-term follow-up care structures across Europe. Results: Three ongoing best practice projects are presented—each reflecting one important element in the delivery and provision of comprehensive long-term follow-up care: The PanCareFollowUp Project, the Survivorship-Passport and the ZONE-project. Conclusion: The Childhood Cancer International Europe Survivors Network call for action: We need the support of politicians and our health care systems to make sure that every single survivor gets the long-term care that they need. So #RaiseYourHands4Survivors and help us close the gap! [ABSTRACT FROM AUTHOR]

Purpose: This study aimed to elucidate experiences and preferences for survivorship care delivery among adolescent and young adult (AYA) childhood cancer survivors who experienced healthcare transitions.Methods: Eight focus groups were conducted with two groups of AYA survivors and their parents: (1) those who recently completed cancer treatment and are beginning follow-up care and (2) those who disengaged in follow-up care after the transition from pediatric to adult survivorship clinics. Interviewers used a structured interview guide that contained questions about perceptions and preferences for survivorship care models, resources, and tools (e.g., a survivorship care plan). We employed directed content analysis techniques to identify and organize relevant themes.Results: Results of this study support six primary themes for optimizing survivorship care models for AYA: (1) improve knowledge of late effects and need for LTFU; (2) provide supportive services that help to address fear and uncertainty about health; (3) adapt survivorship care to be consistent with AYA developmental factors; (4) increase support surrounding healthcare transitions; (5) improve survivorship care communication and coordination between patients and families, and between providers; and (6) incorporate digital health tools.Conclusions: These groups represent vulnerable patient populations in AYA survivorship care and their perspectives highlight potential clinical and research priorities for enhancing long-term care models.Implications For Cancer Survivors: Elucidating AYA and parent recommendations for survivorship care delivery can help to promote continuous engagement in care, target unmet needs, and promote health through survivorship models that are deemed acceptable to both patients and families. [ABSTRACT FROM AUTHOR]

Purpose: Childhood cancer survivors need regular, risk-adapted, long-term survivor care. This retrospective study describes the proportion of survivors seen for an initial survivor clinic visit within a large pediatric oncology program.Methods: Patients diagnosed with non-central nervous system childhood malignancies from 2007 to 2012 were followed from the time of survivor clinic eligibility (2 years following completion of therapy) through their initial survivor clinic visit or end of study. Demographic, cancer-related, and logistical factors related to clinic attendance were examined using Kaplan-Meier curves and Cox proportional regressions.Results: Eligible survivors were 53.0% male, 51.5% non-Hispanic white, and 30.9% survivors of leukemia. Among the 866 eligible survivors for this study, 610 (70.4%) completed their initial visit. After controlling for sex and time eligible, survivors who received surgery only (aHR 0.04 (0.02, 0.08)) or radiation only (0.24 (0.15, 0.39)) and who had Medicaid (0.77 (0.64, 0.92)) were significantly less likely to have an initial visit as were those of black or other/mixed race and those who lived > 25 mi from the clinic (p < 0.01). Survivors aged 6-11 years or 12-17 years at eligibility were significantly more likely to complete an initial visit as compared to those aged 2-5 years (1.55 (1.24, 1.93) and 1.44 (1.14, 1.83), respectively).Conclusions: Nearly a third of survivors were not seen in a pediatric survivor clinic despite the importance of survivor care. These results identify populations at risk for not pursuing long-term survivorship care.Implications For Cancer Survivors: Failure to transition to pediatric survivor care may lead to lifelong non-engagement and incorrect perceptions about future health. [ABSTRACT FROM AUTHOR]

Background: Data on the status of long-term follow-up (LTFU) care for childhood cancer survivors (CCSs) in Korea is lacking. This study was conducted to evaluate the current status of LTFU care for CCSs and relevant physicians' perspectives., Methods: A nationwide online survey of pediatric hematologists/oncologists in the Republic of Korea was undertaken., Results: Overall, 47 of the 74 board-certified Korean pediatric hematologists/oncologists currently providing pediatric hematology/oncology care participated in the survey (response rate = 63.5%). Forty-five of the 47 respondents provided LTFU care for CCSs five years after the completion of primary cancer treatment. However, some of the 45 respondents provided LTFU care only for CCS with late complications or CCSs who requested LTFU care. Twenty of the 45 respondents oversaw LTFU care for adult CCSs, although pediatric hematologists/oncologists experienced more difficulties managing adult CCSs. Many pediatric hematologists/oncologists did not perform the necessary screening test, although CCSs had risk factors for late complications, mostly because of insurance coverage issues and the lack of Korean LTFU guidelines. Regarding a desirable LTFU care system for CCSs in Korea, 27 of the 46 respondents (58.7%) answered that it is desirable to establish a multidisciplinary CCSs care system in which pediatric hematologists/oncologists and adult physicians cooperate., Conclusion: The LTFU care system for CCS is underdeveloped in the Republic of Korea. It is urgent to establish an LTFU care system to meet the growing needs of Korean CCSs, which should include Korean CCSs care guidelines, provider education plans, the establishment of multidisciplinary care systems, and a supportive national healthcare policy., Competing Interests: The authors have no potential conflicts of interest to disclose., (© 2023 The Korean Academy of Medical Sciences.)

Purpose: Childhood cancer patients report low physical activity levels despite the risk for long-term complications that may benefit from exercise. Research is lacking regarding exercise barriers, preferences, and beliefs among patients (1) on- and off-therapy and (2) across the age spectrum.Methods: Cross-sectional study in the Yale Pediatric Hematology-Oncology Clinic (October 2013-October 2014). Participants were ≥ 4 years old, > 1 month after cancer diagnosis at < 20 years, not acutely ill, expected to live > 6 months, and received chemotherapy and/or radiation. Participants (or parents if < 13 years) completed a survey.Results: The 162 patients (99% participated) were 34% children (4.0-12.9 years), 31% adolescents (13.0-17.9 years), and 35% adults (≥ 18 years). Most had leukemia/lymphoma (66%); 32% were on-therapy. On-therapy patients were more likely than off-therapy patients (73 vs. 48%; p = 0.003) to report ≥ 1 barrier related to physical complaints, such as "just too tired" (46 vs. 28%; p = 0.021) or "afraid" of injury (22 vs. 9%; p = 0.027). The majority preferred walking (73%), exercising at home (91%), exercising in the afternoon (79%), and a maximum travel time of 10-20 min (54%); preferences did not vary significantly by therapy status or age. Most respondents (94%) recognized the benefits of exercise after cancer, but 50% of on- vs. 12% of off-therapy patients believed "their cancer diagnosis made it unsafe to exercise regularly" (p < 0.001).Conclusions: Physical activity barriers pertaining to physical complaints and safety concerns were more pronounced in on-therapy childhood cancer patients but persisted off-therapy. Preferences and beliefs were relatively consistent. Our data can inform interventions in different patient subgroups. [ABSTRACT FROM AUTHOR]

Purpose: Given childhood cancer survivors' risk of treatment-induced late effects, long-term follow-up care is recommended. We explored experiences with late effects-related care and preferences for long-term follow-up care among adult survivors of childhood malignant lymphoma in Norway.Methods: We conducted five focus group interviews with 34 survivors (19 females; 21 Hodgkin/13 non-Hodgkin lymphoma survivors; mean age 39 years; mean time from diagnosis 26 years). Data was analyzed using principles of thematic analysis.Results: Two main themes were identified: (1) the survivors' experiences with late effects-related care and (2) their preferences for long-term follow-up care. Most of the survivors were dissatisfied with their late effects-related care due to perceptions of poor coordination of healthcare needs in a fragmented system, combined with a perceived lack of knowledge of late effects among themselves and general practitioners (GPs). All survivors valued long-term follow-up care. Oncologists were the preferred care providers, but GPs were considered acceptable providers if they had sufficient knowledge of late effects and routine examinations, short waiting times, and improved GP-oncologist collaboration.Conclusions: Our results suggest that a shared care model of long-term follow-up care involving specialists, GPs, and the survivors themselves is likely to fulfill several of the currently unmet needs among adult survivors of childhood cancers. Improved patient education about late effects and follow-up care would aid self-management. The survivors' concerns regarding lack of sufficient knowledge of late effects among GPs suggest a need for improving access to, and dissemination of, information of late effects. [ABSTRACT FROM AUTHOR]

Purpose: Focusing on primary care providers (PCPs) of known childhood cancer survivors, we used a mixed methods approach to understand providers' experiences with the survivorship care plan (SCP), as well as preferences and barriers regarding survivorship care.Methods: The SCP was sent to 202 eligible PCPs of patients attending a regional survivorship clinic. The PCPs then completed quantitative postal surveys. Sixteen PCPs underwent an additional qualitative interview. Provider characteristics were examined as potential predictors of experiences, preferences, and barriers regarding survivorship care. Grounded theory was utilized to analyze the qualitative data.Results: Respondents (n=134) included 55% pediatricians, 23% internists, 20% family practitioners, and 2% obstetricians/gynecologists. Only 8% of PCPs preferred to have primary responsibility for survivorship care; 46% favored a specialized clinic. A minority of PCPs reported that they felt "very comfortable" using the SCP to guide surveillance (31%) or deliver all survivorship care (3%). Endorsed barriers included lack of knowledge/training (74%), not recalling or understanding the contents of the SCP (69%), and uncertainty about who is responsible for providing care (58%). Two distinct themes emerged from the qualitative interviews: a preference not to be responsible for survivorship care, and uncertain utility of the SCP.Conclusions: Our study suggests that PCPs of childhood cancer survivors generally felt uncomfortable using the SCP and providing survivorship care. Even with the availability of the SCP, the biggest barrier was lack of knowledge. Our data suggests that including PCPs in survivorship care will require additional educational opportunities and evaluation of more collaborative models of care delivery. [ABSTRACT FROM AUTHOR]

Purpose: Because many survivors do not receive recommended follow-up, we sought to characterize patterns and predictors of survivorship clinic attendance in a population-based sample of childhood cancer survivors.Methods: Using the Connecticut Tumor Registry, we identified all patients diagnosed with cancer at age ≤ 18 years from March 1, 1998 to March 1, 2008, still in follow-up 5 years post-diagnosis, and living <100 miles from Yale. Survivorship clinic attendance, demographics, disease characteristics, and treatment exposures were ascertained. Vital status was confirmed with the National Death Index. The Kaplan-Meier curves and hazard ratios were calculated for survivorship clinic attendance.Results: Four hundred eighty-nine eligible survivors currently 19.1 ± 6.2 years old were diagnosed at a mean age of 9.1 ± 5.8 years with leukemias/lymphomas (47.2 %), central nervous system tumors (16.4 %), sarcomas (11.2 %), thyroid cancers or melanomas (7.8 %), and other solid tumors (17.4 %). The 10-year post-diagnosis clinic attendance probability was 27.8 % (SE = 2.3) overall, and 36.9 % (SE = 4.4) and 40.8 % (SE = 3.8), in patients with radiation and anthracycline exposure, respectively. In adjusted analysis, patients with insurance (HR = 2.90; p < 0.01 for private and HR = 2.05; p = 0.02 for public assistance), treated with anthracyclines (HR = 3.05; p < 0.01), and treated with radiation (HR = 1.90; p < 0.01) were significantly more likely to attend clinic.Conclusions: The majority of childhood cancer survivors in our population-based sample had not attended survivorship clinic, even among those with high-risk exposures. Health care access, as measured by insurance status, was an important predictor of clinic attendance.Implications For Cancer Survivors: More research is needed to clarify the link between insurance status and survivorship care to increase appropriate late effects surveillance in this population. [ABSTRACT FROM AUTHOR]

Evidence-based clinical practice guidelines are essential to ensure that childhood cancer survivors at risk of chronic health conditions receive effective long-term follow-up care. However, adult survivors of childhood cancer are not always engaged in recommended health promotion and follow-up practices, as many centres do not have a formal transition programme that prepares survivors and their families for successful transfer from child-centred to adult-oriented healthcare. The need for a specific pan-European guideline for the transition of care for childhood cancer survivors has been recognised. The first step is to define the concept of transition of care for survivors of childhood cancer based on existing evidence. [ABSTRACT FROM AUTHOR]

Purpose: Childhood cancer survivors require life-long care focused on the specific late effects that may arise from their cancer and its treatment. In many centers, survivors are required to transition from follow-up care in a paediatric cancer center, to care provided in an adult care setting. The purpose of this study was to identify the psychological factors involved in this transition to adult care long-term follow-up clinics.Methods: Qualitative interviews were conducted with ten paediatric survivors still in paediatric care, as well as 28 adult survivors of whom 11 had transitioned successfully to adult care (attended three long-term follow-up (LTFU) appointments consecutively); ten who failed to transition (attended at least one LTFU appointment as an adult, but were inconsistent with subsequent attendance); and seven who had never transitioned (did not attend any LTFU care as an adult). Line-by-line coding was used to establish categories and themes. Constant comparison was used to examine relationships within and across codes and categories.Results: Two overall categories and four subthemes were identified: (1) Identification with being a cancer survivor included the subthemes of 'cancer identity' and 'cancer a thing of the past' and; (2) Emotional components included the subthemes of 'fear and anxiety' and 'gratitude and gaining perspective'. The analysis revealed that the same factor could act as either a motivator or a hindrance to successful transition in different survivors (e.g., fear of recurrence of cancer might be a barrier or a facilitator depending on the survivor's life experience).Conclusions: Psychological factors are an important consideration when preparing cancer survivors for transition to adult long-term follow-up care. Identifying and addressing the individual psychological needs of childhood cancer survivors may improve the likelihood of their successful transition to adult care. [ABSTRACT FROM AUTHOR]

Aims This study describes alcohol consumption among adult survivors of pediatric cancer compared to sibling controls and a national sample of healthy peers. Risk factors for heavy drinking among survivors are described. Design, setting and participants Cross-sectional data were utilized from the Childhood Cancer Survivor Study including adult survivors of pediatric cancer ( n = 10 398) and a sibling cohort ( n = 3034). Comparison data were drawn from the National Alcohol Survey ( n = 4774). Measurement Alcohol consumption, demographic, cancer diagnosis, treatment and psychosocial factors were measured. Findings Compared to peers, survivors were slightly less likely to be risky [adjusted odds ratio (ORadj) = 0.9; confidence interval (CI) 0.8–1.0] and heavy drinkers (ORadj = 0.8; CI 0.7–0.9) and more likely to be current drinkers. Compared to siblings, survivors were less likely to be current, risky and heavy drinkers. Risk factors for survivors' heavy drinking included being age 18–21 years (ORadj = 2.0; 95% CI 1.5–2.6), male (ORadj = 2.1; 95% CI 1.8–2.6), having high school education or less (ORadj = 3.4; 95% CI 2.7–4.4) and drinking initiation before age 14 (ORadj = 6.9; 95% CI 4.4–10.8). Among survivors, symptoms of depression, anxiety or somatization, fair or poor self-assessed health, activity limitations and anxiety about cancer were associated with heavy drinking. Cognitively compromising treatment, brain tumors and older age at diagnosis were protective. Conclusions Adult survivors of childhood cancer show only a modest reduction in alcohol consumption compared to peers despite their more vulnerable health status. Distress and poorer health are associated with survivor heavy drinking. Screening for alcohol consumption should be instituted in long-term follow-up care and interventions among survivors and siblings should be established to reduce risk for early drinking. [ABSTRACT FROM AUTHOR]

Background: Most children and adolescents diagnosed with cancer become long-term survivors. For most of them, regular follow-up examinations to detect and treat late effects are necessary, especially in adulthood. The transition from pediatric to adult-focused follow-up care is a critical moment for childhood cancer survivors (CCSs); a substantial proportion of CCSs are lost to follow-up in this transition process and do not attend follow-up care in adulthood. This can have serious effects on survivors' health if late effects are not discovered in a timely fashion., Objective: In this study, we primarily assess the current follow-up situation, related needs, and knowledge of adolescent and young adult CCSs who have transitioned from pediatric to adult-focused follow-up care. As secondary objectives, we evaluate transition readiness, identify facilitating factors of transition and adherence to long-term follow-up (LTFU) care, and compare three different transition models., Methods: The Aftercare of Childhood Cancer Survivors (ACCS) Switzerland study is a prospective, multicenter, observational study that was approved by the ethics committee in February 2019. We are recruiting CCSs from three pediatric oncology centers and using questionnaires to answer the study questions., Results: To date, we have recruited 58 participants. The study is ongoing, and recruitment of participants will continue until January 2021., Conclusions: The ACCS study will provide information on CCSs' preferences and expectations for follow-up care and their transition into the adult setting. The results will help improve the LTFU care and cancer knowledge of CCSs and subsequently enhance adherence to follow-up care and reduce loss to follow-up in adulthood., Trial Registration: ClinicalTrials.gov NCT04284189; https://clinicaltrials.gov/ct2/show/NCT04284189?id=NCT04284189., International Registered Report Identifier (irrid): PRR1-10.2196/18898., (©Sibylle Denzler, Maria Otth, Katrin Scheinemann. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 26.08.2020.)

Childhood cancer survivors (CCS) have a high risk of medical late effects following cancer therapy. Psychosocial late effects are less often recognized. Many CCS do not receive long-term follow-up (LTFU) care, and those who do are rarely screened for psychosocial late effects. An interdisciplinary team conducted a systematic review of qualitative and quantitative studies to assess social, educational, vocational, psychological, and behavioral outcomes along with factors related to receipt of LTFU care. We propose that psychosocial screening be considered a standard of care in long-term follow-up care and that education be provided to promote the use LTFU care starting early in the treatment trajectory., Competing Interests: Nothing to declare., (© 2015 Wiley Periodicals, Inc.)