Survivorship Care After Childhood Cancer: A Systematic Review of Reported Barriers and Facilitators

Erin M Mobley; Xu Ji; Joel Milam; Kimberly Miller; David R Freyer; Carla L Fisher; Raymond B Mailhot Vega; Julia Stal; Carol Y Ochoa-Dominguez; Maria Bolshakova; Naghmeh Aminzadeh; Jennifer Dinalo; Aneesa Motala; Susanne Hempel

doi:10.1177/10732748251401263

. 2025 Dec 26;32:10732748251401263. doi: 10.1177/10732748251401263

Survivorship Care After Childhood Cancer: A Systematic Review of Reported Barriers and Facilitators

Erin M Mobley ^1,^✉, Xu Ji ^2,³, Joel Milam ^4,⁵, Kimberly Miller ^4,⁶, David R Freyer ^4,^6,^7,⁸, Carla L Fisher ⁹, Raymond B Mailhot Vega ¹⁰, Julia Stal ¹¹, Carol Y Ochoa-Dominguez ¹², Maria Bolshakova ¹³, Naghmeh Aminzadeh ¹³, Jennifer Dinalo ¹³, Aneesa Motala ¹³, Susanne Hempel ¹³

PMCID: PMC12745552 PMID: 41450098

Abstract

Introduction

Methods

As part of a larger project on CCS, this systematic review followed a detailed protocol (CRD42021227965) and searched PubMed, CINAHL, and PsycINFO for studies on survivorship care for CCS without date restriction, and abstracted reported barriers and facilitators. Searches identified 8585 citations and 2 independent reviewers screened 2934 publications at full text. We evaluated the risk of bias for individual studies and quality of evidence (QoE) across barriers and facilitators.

Results

A total of 49 studies reported barriers and facilitators (survivors N = 33, clinicians N = 19, family members N = 8, and health system leaders N = 7) addressing knowledge (beliefs, autonomy, culture), prioritization (active avoidance, trust, communication), and infrastructure (health system resources, transitions). We found high QoE of barriers including lack of knowledge and inaccurate beliefs (survivorship care not needed or redundant), active avoidance and lack of trust (high level of emotional trauma and anxiety, lack of confidence in care team, no local providers with experience in survivorship care), and gaps in infrastructure (financial toxicity/hardship, lack of insurance coverage, difficulty scheduling appointments, and lack of stable housing). Conversely, knowledge (providing a survivorship care plan or treatment summary, supporting patient autonomy) and prioritization (close relationships with clinicians, enhanced care coordination, communication) can also facilitate survivorship care engagement, documented with high QoE.

Conclusions

We found strong empirical evidence of barriers to and facilitators of survivorship care, including potentially modifiable factors surrounding knowledge, prioritization, and infrastructure survivorship care. Prospective, multilevel approaches are needed to improve the receipt of guideline-concordant survivorship care among CCS.

Keywords: cancer survivors, health services accessibility, health equity, care engagement, barriers, facilitators

Plain Language Summary

Childhood cancer survivors (CCS) experience many long-term health problems that can be alleviated by receiving guideline-concordant survivorship care. However, many CCS encounter barriers to accessing care and do not receive recommended survivorship care. We reviewed the empirical evidence of barriers to and facilitators of survivorship care for CCS. We found strong empirical evidence of barriers to and facilitators of survivorship care, including financial, insurance, scheduling, transportation, local availability of services, and resources needed to deliver survivorship care. Prospective, multilevel approaches are likely needed to improve the receipt of guideline-concordant survivorship care among CCS.

Introduction

Survival rates for childhood cancer have improved markedly over the past 5 decades in the United States (U.S.), with 5-year survival increasing from approximately 58% in the 1970s to 85% today.^1-3 This progress reflects advances in risk-adapted therapies—including surgery, chemotherapy, radiation therapy, immunotherapy, and stem cell transplantation—combined with significant enhancements in supportive care. As a result, there are currently over half a million survivors of childhood cancer diagnosed before age 21, a number expected to grow to approximately 580 000 by 2040.⁴

However, improved survival has led to the emergence of a distinct population facing long-term health challenges. Childhood cancer survivors (CCS) are at elevated risk for a wide range of chronic late effects which may develop shortly after therapy or many years later.^5-7 These conditions may include subsequent malignant neoplasms, cardiovascular and pulmonary complications, endocrine and reproductive dysfunction, neurocognitive impairments, and skeletal health issues such as osteopenia and osteoporosis, among others.^5-7 By 20 years post-diagnosis, nearly one-third of CCS develop severe, life-threatening, or fatal health problems.⁸ Additionally, mortality rates among survivors remain significantly higher than those observed in the general population, with deaths from late effects increasing over time.^9,10 The cumulative burden of late effects affects survivors’ physical health, psychological well-being, functional status, and life opportunities.¹¹ Survivors often encounter barriers to achieving desired educational, occupational, and social outcomes, which may further complicate their ability to maintain continuous healthcare engagement.¹²

Recognizing these risks, national organizations emphasize the importance of lifelong, exposure-based follow-up care. Survivorship care aims to detect late effects early, manage emerging health conditions, and promote overall wellness through tailored surveillance and intervention strategies.¹³ In 2003, the Children’s Oncology Group (COG) introduced the Long-Term Follow-Up (LTFU) Guidelines, offering evidence-based recommendations for risk-based screening and health maintenance among survivors of pediatric and young adult cancers.¹⁴ Despite these guidelines and increasing awareness of the need for lifelong care among clinicians, many CCS fail to consistently engage with recommended follow-up services, particularly during and following the transition into adult healthcare settings.^5,15-17 While much effort has been directed toward designing survivorship care models, less is known about the real-world factors that facilitate or impede survivors’ participation in these programs.

To address this critical knowledge gap, we systematically reviewed the empirical literature to identify and synthesize existing evidence on the barriers to and facilitators of survivorship care engagement among childhood cancer survivors. This review was guided by the central question: What factors hinder or promote survivorship care for individuals treated for childhood cancer? If we have a better understanding of factors that serve as barriers and facilitators to successful survivorship care, we can design studies to precisely intervene in a way that may improve effective and efficient survivorship care resources. This will be particularly needed in the future, as survival rates continue to improve and there are more cancer survivors alive who need to access lifelong care.

Methods

This systematic review was registered in PROSPERO (CRD42021227965), followed a detailed protocol, and reporting adhered to PRISMA guidelines.^18-20

The work builds on a larger body of work on disparities and barriers to care among CCS and interventions to support CCS.^16,21,22 The review is focused on reported barriers of and facilitators to survivorship care engagement among CCS. These were perceived barriers or facilitators reported by patients, their caregivers, providers, or health system representatives; elicited in quantitative or qualitative analyses. Analytically derived barriers or facilitators in studies evaluating sample composition of patients receiving survivorship care were the topic of a systematic review on care disparities reported elsewhere.¹⁶ The review was determined to be exempt by the Institutional Review Board at the University of Southern California (HS-20-00 483).

Sources and Searches

A research librarian who specializes in systematic reviews designed, completed, and documented the search strategy (see Supplemental Material). We searched the research databases PubMed, CINAHL, and PsycINFO in September 2025 for published research on survivorship care barriers or facilitators to survivorship care engagement. We identified studies through 2 search strategies: 1) publications that focused on barriers or facilitators directly (eg, addressed barriers or facilitators in the title, abstract, or key word), and 2) searched for empirical studies on CCS (ie, which did not address barriers or facilitators in the title, abstract, or key word). In addition, we reference-mined relevant reviews and included studies.

Screening and Abstraction

Table S-1 in the Supplemental Material documents the eligibility criteria. We included all studies that evaluated potential barriers or facilitators to pediatric survivorship care, defined as studies reporting factors either positively or negatively associated with survivorship care. Studies had to report empirical data on CCS (diagnosed before age 21 years with any cancer, not receiving cancer treatment during the study period, and receiving or eligible to receive survivorship care at the time of study). We used systematic review software for both literature screening and data abstraction. All identified citations were screened by 2 independent literature reviewers familiar with the CCS literature. Those determined to be potentially relevant by at least one reviewer were obtained as full text. Initially excluded citations were screened with a machine learning algorithm to avoid reviewer errors and bias. Two reviewers independently screened publications against the pre-specified eligibility criteria. Discrepancies were resolved by group discussion and consensus.

One reviewer abstracted applicable data using detailed and pilot-tested data extraction forms, and a content expert checked the data for accuracy. All available publications identified for a study were consolidated into one study record (a study was defined by the included participants) to avoid counting the same study multiple times. We recorded the study design, country of origin, study participant characteristics (ie, cancer type, proportion of CCS), and type of analysis. We abstracted the results of assessments of CCS, caregivers, and healthcare providers and the statistical significance of results.

Critical Appraisal and Synthesis

We used the Quality In Prognostic Studies (QUIPS)²³ domains study participation, study attrition, prognostic factor measurement, outcome measurement, study confounding, and statistical analysis and reporting to assess risk of bias in included studies. Scoring details are documented in the Supplemental Material. Comprehensive evidence and risk of bias tables document the presence and absence of barriers and facilitators for each content category and report the risk of bias for the included studies.

The evidence was further synthesized by grouping the overarching themes of reported facilitators or barriers together into groups with similarly themed constructs. The quality of evidence (QoE) across studies was assessed using a framework for prognostic research.²⁴ Briefly, we did not use low QoE as the starting point to avoid floor effects; instead, we started at high and downgraded studies based on consistency and replication of results across studies. We downgraded findings for inconsistency of results across studies or lack of replication, indirectness of outcome measures, lack of precision of reported results, and potential reporting bias. We formulated evidence statements from the identified literature and differentiated high (consistent results across studies, body of evidence includes at least one low risk of bias study reporting on a large-scale, multi-institutional, or population-based/representative sample), moderate (consistent results across a small body of evidence of at least moderate risk of bias studies), and low (inconsistent results or lack of replication) evidence. The categories correspond to the level of uncertainty associated with the summary.

Results

We screened 8585 citations, 2934 full-text publications were reviewed against the pre-specified eligibility criteria, and a total of 49 studies reported in 75 publications reporting on barriers to or facilitators of survivorship care for.^25-99 Figure 1 presents the literature flow diagram and the reasons for exclusion.

The identified studies included CCS in the U.S. (N = 25), Canada (N = 5), Germany (N = 4), United Kingdom (N = 3), Australia (N = 1), China (N = 1), France (N = 1), Japan (N = 1), Korea (N = 1), New Zealand (N = 1), Switzerland (N = 1), and multiple countries (N = 5). Across all included studies (N = 49), potential barriers or facilitators to survivorship care were reported that were pertinent to survivors (N = 38), providers (N = 23), caregivers or family members (N = 11), and health system leaders (N = 7). The comprehensive evidence table documents the included studies in detail (Table S-4).

Figure 2 depicts identified barriers and facilitators mapped to whom the barrier or facilitator is pertinent. Figure 3 displays the risk of bias in the included studies. Table S-5 documents the results of the risk of bias assessment for each included study, the scoring criteria, and results for each domain. The most frequently identified risk of bias was derived from prognostic factor measurement, which 9 studies had high risk of bias. The overall risk of bias was high in one study, moderate in 33 studies, and low in 14 studies.

Evidence statements with high or moderate QoE are documented in Table 1. The table is organized by whom the barrier or facilitator is pertinent and documents the details of the reported factors in all studies. We identified 3 overarching areas of barriers and facilitators due to similar themes:

(1) Knowledge, autonomy, and cultural factors
(2) Prioritization, active avoidance, trust, and communication
(3) Health care system infrastructure and transition in care

Table 1.

Summary of Findings of Reported Facilitators and Barriers to Survivorship Care Engagement Supported by Moderate and High Quality of Evidence

Factors		Survivors [QoE]	Caregivers [QoE]	Providers [QoE]	Health system [QoE]
Knowledge, autonomy, and cultural, factors	Facilitators	• Having a survivorship care plan/treatment summary (provided to patient and caregiver regularly, serving as a reminder).^{46,47,52,56,71}[High]	• Include caregivers/parents in conversations to ensure they are knowledgable and understand the importance of survivorship care.^45,72[Moderate]
		• High levels of health care self-efficacy and achieved maturity and responsibility.^33,52[Moderate]
		• Fear of cancer recurrence.^41,69[Moderate]
	Barriers	• Lack of knowledge or understanding of cancer (disease and treatment), late effects, and available resources.^{31,34,35,39-41,47,69,70,72}[High]		• Perceived survivor knowledge deficit.^36,45,51[High]
				• PCPs reported having incomplete or unclear survivorship care plans and treatment history.^44,67,71[High]
		• Inaccurate beliefs regarding survivorship care (eg, not needed, redundant).^31,37,41,50[High]		• PCPs lack of experience and confidence in treating survivors experiencing late effects.^43,51,71[High]
		• Dependence on parents/caregivers, particularly when transitioning survivorship care from pediatric to adult-based care.^33,39,62[Moderate]		• Providers’ lack of knowledge of late effects and lack of familiarity with survivorship guidelines.^29,31,49[High]
		• Parents struggle to allow their child to be independent.^39,72[Moderate]		• PCPs indicated survivors should receive care from a specialty clinic.^44,51[Moderate]
		• Stigma associated with cancer and not wanting to feel different from peers.^32,72[Moderate]		• Perceived lack of survivor desire for survivorship care or to be followed by survivorship/specialist team.^36,45[Moderate]
		• Did not receive a survivorship care plan.^47,53[Moderate]		• Patient communication and compliance.^45,67[Moderate]
	Prioritization, active avoidance, trust, and communication	Facilitators	• Expectation for close relationships with providers, care coordination, and communication.^39,41,65,71[High]	• Communication regarding late effects symptoms in an ongoing manner.^25,32[Moderate]	• Need for preparation and ongoing communication to facilitate transition from pediatric to adult survivorship care (suggested formal visit during treatment with pediatric provider to facilitate the transition).^39,62[Moderate]
• Being taken seriously, positive relationship with care team members, and having confidence and continuity in their care team.^{51,53,56,59,65,71}[High]
• Being engaged in care with PCP.^40,52,56[High]
• Reassurance regarding cancer disease status and late effects.^55,59[Moderate]
• Receipt of a detailed surveillance timeline or survivorship care plan and a recent recommendation for surveillance from a care team member.^45,56[Moderate]
• Information provided by survivorship care specialist or provider with insight into medical history of the patient.^34,47,71[Moderate]
• Discussion about cancer with PCP and shared decision making/communication with PCP regarding surveillance/screening recommendations and insurance coverage.^39,46[Moderate]
Barriers		• High level of emotional trauma and anxiety associated with cancer.^32,47,72[High]	• Lack of parent perceived benefit of survivorship care for their child.^31,51[Moderate]	• Lack of survivor motivation to transition care.^31,48[Moderate]
		• Lack of trust or confidence in care team (survivorship or PCP).^{37,41,43,45,71,73}[High]
		• No local PCPs with experience in caring for cancer survivors to provide survivorship care.^38,62,72,73[High]
				• Perceived lack of survivor desire to leave the comfort of the treating institution or oncologist.^36,51[Moderate]
		• Not willing to take time needed, lack of motivation or patient preference, reluctance to travel, and not prioritizing survivorship care.^31,38,41,73[Moderate]
		• Competing scheduling demands for the survivor (eg, not wanting survivor to miss school).^31,48[Moderate]
		• Do not want information about cancer recurrence.^41,69[Moderate]
		• Overdue and insufficient late effects communication.^41,43[Moderate]
Health care system infrastructure and transition from pediatric to adult care		Facilitators	• Flexible scheduling.^47,63[Moderate]		• Clinic-level resource utilization (eg, satellite clinic, local clinic for lab work, funding from government organizations, social worker, space for support group).^29,48[Moderate]
	• Wide range of comprehensive supportive and survivorship care services offered to survivors.^63,65[Moderate]		• Efficient workflow and defined processes, including scheduling technology, flexible scheduling, and electronic personal methods of communication.^29,48[Moderate]
			• Multidisciplinary team with low turnover, who use structured and coordinated processes dedicated to survivorship care.^33,34,48[Moderate]
	Barriers	• Financial hardship due to associated medical expenses and financial long-term consequences.^{31,37,52,59,62,66,73}[High]	• Long waiting lists.^55,57[Moderate]	• Lack of survivor access to a PCP or appropriate adult services; lack of PCP involvement.^{31,36,53,64,71}[High]	• Inadequate resources, lack of recurrent funding, and missing infrastructure for survivorship care.^26,30,53,71[High]
		• Insurance status/coverage and worry.^{27,28,30,37,40,53,56,62,73}[High]	• Lack of continuity of the care provided and insufficient organization of appointments by healthcare providers.^34,45[Moderate]	• Difficult and abrupt transition from pediatric to adult care; inconsistent transition practices and inadequate coordination between systems.^31,34,43,71[High]	• Lack of infrastructure and resources to identify and communicate with PCPs, and gaps in coordination across departments and health systems.^26,31,33 [High]
		• Difficulty scheduling appointments.^{34,40,41,53,56,59}[High]	• Financial or insurance limitations.^55,57[Moderate]	• Lack of funding support for survivorship programs and staff.^{29,31,33,36,43,48,51}[High]	• Missing organizational structure for communication and collaboration across departments within the health system.^33,53[Moderate]
		• Travel large distances or transportation.^{27,31,34,35,40,41,47,59,66,73} [high]	• Transportation and travel (eg, from remote areas).^55,57[Moderate]	• Lack of provider time.^29,33,43,67[High]	• Lack of or insufficient local availability of services.^53,66[Moderate]
		• Lack of stable or continuous housing.^{52,56,59,62,73}[High]		• Insurance coverage of recommended screening for late effects.^38,67,72[High]
		• Difficult and abrupt transition to adult health care system.^43,47,72[High]		• Distance/transportation.^48,53[Moderate]
		• Poor communication and collaboration between care teams.^43,51,62,71[High]
		• Long wait times accessing supportive care services, including mental health services.^58,62[Moderate]
		• Loss of continuity of care when transitioning from pediatric to adult survivorship care.^27,43[Moderate]
		• Lack of coordination of care/difficulty navigating complex adult health system to schedule appointments.^41,72[Moderate]
		• Inconvenience.^43,59,62[Moderate]
		• Time off work/away from home.^27,47,53[Moderate]

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Abbreviations: QoE, quality of evidence; PCP, primary care provider.

QoE was upgraded or downgraded based on consistency in GRADE across studies: Low QoE, inconsistent results or lack of replication; Moderate QoE, consistent results across a small body of evidence of at least moderate risk of bias studies; High QoE, consistent results across studies, body of evidence includes at least one low risk of bias study reporting on a large-scale, multi-institutional, or population-based/representative sample.

The findings are briefly summarized below. The synthesis focuses on high and moderate QoE. The full summary of findings table, including studies with low QoE, is shown in Supplemental File Tables S-2 and S-3.

Knowledge, Autonomy, and Cultural Factors

We found high QoE in patient reports that having a survivorship care plan or treatment summary provided to the patient and caregiver, serving as a reminder, can facilitate survivorship care engagement.^{46,47,52,56,71} Similarly, primary care providers (PCPs) reported that having incomplete or unclear survivorship care plans and treatment history were consistent barriers.^44,67,71 PCPs also indicated that their own lack of knowledge and training in survivorship care and late effects,^44,45,51,71 coupled with inexperience and confidence in treating survivors^43,51,71 and lack of familiarity with the survivorship care guidelines^29,31,49 were barriers (high QoE). Survivors also endorsed barriers to survivorship care including a lack of knowledge or understanding of cancer (disease and treatment), late effects, and available resources, in addition to inaccurate beliefs about survivorship care (eg, not needed, redundant; all high QoE).^{31,34,35,39-41,47,69,70,72}

We found moderate QoE pertaining to knowledge regarding the need for life-long survivorship care. Fear of cancer recurrence was identified as a facilitator to survivorship care.^41,69 PCPs reported a perceived lack or desire of providing survivorship care generally, survivors’ preferences to be followed by a survivorship or specialist team, and a lack of communication and compliance with recommendations as barriers to care.^36,44,45,67 Survivors reported not receiving a survivorship care plan as a barrier to care engagement^47,53 (all moderate QoE).

Furthermore, achieving autonomy facilitates survivorship care engagement (moderate QoE). For survivors, dependence on parents or caregivers^33,39,62 and parents struggling to allow their child to be independent^39,72 were identified as barriers to care. Further, survivors identified high levels of health care self-efficacy and achieving maturity and responsibility (eg, “adulting”) as facilitators to survivorship care engagement^33,52; however, the stigma associated with cancer and not wanting to feel different from their peers served as barriers to survivorship care engagement.^32,72 Including caregivers or parents in conversations to ensure they are knowledgeable and understand the importance of survivorship care was demonstrated to facilitate survivorship care engagement in caregiver assessments.^45,72

Supplemental File Tables S-2 and S-3 document the large number of potential barriers and facilitators that have been identified in individual studies or for which conflicting evidence precluded stronger evidence statements captured in the knowledge theme. Select facilitators include access to clear information and resources about survivorship care options and the importance of continued care,³⁴ information provided in the early stages of survivorship and before acute cancer treatment,³⁴ caregiver involvement and enhanced education about the need for survivorship care, particularly during transitions in care,³⁴ belief that they did not need to know about future health issues and are too young to have complications from treatment that were a long time ago,⁶¹ having cancer with a “good prognosis” or minimal rates of recurrence and late effects,⁴¹ not understanding potential late effects,⁵⁵ care providers not having the necessary skills to share information, motivate, and reinforce CCS,²⁹ respectively.

Prioritization, Active Avoidance, Trust, and Communication

Survivors reported the following as facilitators to survivorship care engagement (high QoE): 1) close relationships with clinicians, enhanced care coordination, and communication^39,41,65,71; 2) being taken seriously, positive relationship with care team members, and having confidence and continuity in their care team^{51,53,56,59,65,71}; and 3) being engaged in care with a PCP.^40,52,56 From the perspective of survivors, the following were identified as barriers to survivorship care engagement resulting in active avoidance and lack of trust, with high QoE: 1) experiencing a high level of emotional trauma and anxiety associated with their cancer experience^32,47,72; 2) lack of confidence in the care team^{37,41,43,45,71,73}; and 3) no local PCPs with experience in caring for cancer survivors to provide survivorship care.^38,62,72,73

Ongoing communication with and reassurance from clinicians regarding cancer disease status and late effects facilitates survivorship care engagement by supporting prioritization and trust for survivors and caregivers^25,32,55,59 were identified as facilitators for surviorship care based on moderate QoE. This included discussion about cancer, shared decision making, and open and ongoing communication with the survivor’s PCP regarding surveillance and screening recommendations.^39,46,62 The following were also identified as facilitators to survivorship care engagement with moderate QoE: 1) receipt of a detailed surveillance timeline or survivorship care plan and a recent recommendation for surveillance from a care team member^45,56; 2) information provided by survivorship care specialist or provider with insight into medical history of the patient.^34,47,71 Finally, to facilitate successful survivorship care, clinicians emphasized the need for preparation and ongoing communication with moderate QoE.^39,62

Survivors’ lack of motivation or perceived benefit, not wanting to take time needed, reluctance to travel, competing scheduling demands for the survivor (eg, not wanting survivor to miss school), and generally not prioritizing survivorship care were cited as barriers by survivors, caregivers, and care providers (moderate QoE).^{31,38,41,48,51,73} We also found moderate QoE pertinent to survivors’ preferences regarding communication: 1) some survivors do not want information about their cancer recurrence and 2) other survivors felt the information that was provided was overdue or insufficient.^41,43

Low QoE is documented in Supplemental File Tables S-2 and S-3 indicating that from the perspective of survivors having a painful memory of the cancer or treatment⁵⁶ or being laughed at or their concerns dismissed, leading to frustration and loss of faith in their PCP’s willingess and ability to provide care⁴³ can be barriers to survivorship care. Caregivers or family members repored that low confidence in PCPs’ knowledge and ability to deliver survivorship care served as a barrier to care.⁷¹ For clinicians, barriers included conflict between COG recommendations for risk-based care and adult provider recommendations³⁶ while health system leaders, for example, reported the inability to locate and communicate with survivors.³⁰

Health Care System Infrastructure and Transition

Survivors indicated that financial hardship due to associated medical expenses and long-term financial consequences,^{31,37,52,59,62,66,73} insurance status or coverage and the associated worry,^{27,28,30,37,40,53,56,62,73} difficulty scheduling appointments,^{34,40,41,53,56,59} traveling long distances or transportation,^{27,31,34,35,40,41,47,59,66,73} and lack of stable or continuous housing^{52,56,59,62,73} were reported barriers to survivorship care (high QoE). Survivors also reported difficult and abrupt transitions to the adult health care system,^43,47,72 as well as poor communication and collaboration across care teams^43,51,62,71 and the as barriers with high QoE. From the perspective of clinicians and health system leaders, lack of funding support for survivorship programs and staff,^{29,31,33,36,43,48,51} lack of provider time,^29,33,43,67 unknown insurance coverage of late effects screening^38,67,72 and inadequate resources, lack of recurrent funding, and missing infrastructure for survivorship care^26,30,53,71 were all consistently cited as significant barriers to survivorship care engagement (high QoE). Clinicians also reported that lack of survivor access to a PCP or appropriate adult services,^{31,36,53,64,71} along with a difficult and abrupt transition from pediatric to adult care and inadequate coordination between systems^31,34,43,71 were barriers (high QoE). Finally, health system leaders indicated that lack of infrastructure and resources to identify and communicate with PCPs and gaps in coordination across departments and health systems were also barriers with high QoE.^26,31,33

Survivors indicated that long wait times to access supportive care services, (including mental health services),^58,62 loss of continuity of care when transitioning from pediatric to adult survivorship care,^27,43 inconvenient appointments,^43,59,62 needing time off work or away from home,^27,47,53 and lack of coordination of care or difficulty navigating complex adult health system to schedule appointments^41,72 were barriers to survivorship care documented (all moderate QoE). Caregivers reported that long waiting lists, lack of cotinuity of care and funding, coupled with challenges regarding transportation and travel from remote areas were barriers (all moderate QoE).^55,57 Clinicians reported that distance and transportation^48,53 were constraints in survivorship care engagement, while health system leaders reported that insufficient local availability of services,^53,66 lack of organizational structure for communication and collaboration,^33,53 lack of appointment availability outside of normal business hours, lack of telehealth availability, and fragmented care delivery^53,66 were barriers to consistent survivorship care engagement (moderate QoE).

Both survivors^47,63 and clinicians^29,48 highlighted flexible scheduling (moderate QoE). Providers emphasized that scheduling technology and electronic personal methods of communication to facilitate survivorship care engagement.^29,33,48 Use of efficient workflows with defined processes,^29,48 having a multidisciplinary team with low turnover (who use structured and coordinated processes dedicated to survivorship care),^33,34,48 and clinic-level resources (eg, satellite clinic, local clinic for lab work, funding to support a social worker or space for support group)^29,48 were also identified as supporting survivorship care engagement (moderate QoE). Survivors also mentioned that offering a wide range of comprehensive supportive and survivorship care services to survivors will help facilitate and maintain engagement (moderate QoE).^63,65

Facilitators to survivorship care involving infrastructure were documented with low QoE by survivors and were not reported by caregivers or family members. Survivors indicated that working across departments to collaboratively schedule appointments,⁴⁷ insurance acceptability,⁶³ and availability of a patient navigator or insurance counselor⁶³ should improve survivorship care engagement. Conversely, survivors indicated that under-resourced survivorship clinics,⁴³ lack of time with clinicians,⁴³ decentralized care,⁵¹ and having their care terminated by a provider³⁵ were barriers, in addition to these being compounded by for survivors of lower socioeconomic status.³⁴

Further, low QoE identified across health system leaders included available high-quality psychosocial support services that are accessible to and inclusive of CCS at the health system level should facilitate enhanced survivorship care engagement.⁵³ However, health system leaders also indicated that limited reimbursement from payers (despite survivorship services being cost-effective) results in staff stress due to uncertainty in long-term employment and planning,²⁶ patients or family members being un- or under-insured,³⁰ lack of a database to support and track survivor health outcomes,³¹ and inaccessible medical records all serve as barriers to care engagement at the health system level.⁵³

Discussion

In this systematic review, we identified that financial, insurance, or scheduling logistics, transportation, local availability of services, and resources needed to deliver survivorship care serve as barriers to care. In contrast, we found that trust in healthcare providers or the medical community or the transition from pediatric to adult care serve as facilitators to survivorship care engagement for CCS. We identified a large quantity of empirical literature that provides insights into barriers and facilitators of survivorship care. The review documents the current state of the survivorship care engagement literature for CCS internationally, opportunities for interventions to alleviate inequities or disparities at multiple levels, and areas for future investigation.

Survival rates for pediatric cancer have increased but survivorship care continues to be suboptimal.^21,100 Although some studies have evaluated different models of survivorship care, there are still many gaps and it is critical that we understand barriers to recommended care better in this complex patient group.¹⁰¹ This review encompassed a broad search designed to identify studies that have tried to elicit potential barriers or facilitators to survivorship care engagement internationally. Prior work has shown that there is also ample evidence of disparities in survivorship care for CCS, in particular those associated with race, ethnicity, and insurance status.¹⁶ The review aimed to objectively document the presence and the absence of barriers and facilitators in relation to care, regardless of the setting of the study or the model of survivorship care used. In doing so, the collective results provide multiple directions for future intervention research and implementation at all levels of care that can help to alleviate health inequities and promote engagement in survivorship care.

To date, many strategies have been proposed to address barriers and disparities to care, that are endorsed by professional organizations. Guidelines suggest a life-long plan for CCS that addresses screening and preventive intervention of late effects as well as detection of potential subsequent cancer incidence. However, prior research has also shown a lack of evaluated interventions and a lack of alignment of the few existing interventions to address barriers and disparities with recommended strategies, particularly in diverse care settings (eg, internationally across different types of health systems).²² Transitioning from pediatrics into adult care can be disruptive for all children, but is of particular importance for CCS. While specialized multidisciplinary survivorship clinics for CCS are likely the gold standard for survivorship care, we also know that primary care will need to be meaningfully engaged, in particular in the fragmented U.S. healthcare system¹⁰² and different models have been suggested.^101,103 Similarly, not all health systems will have access to highly specialized survivorship care providers, and therefore, models of survivorship care should be examined to ensure scalability and sustainability in different types of health systems.

Interventions should be mapped to theoretical frameworks to validate their utilization and approach, for example, using the Capability, Opportunity, Motivation (COM-B) model of behavior change (see Table 2).¹⁰⁴ At the survivor level, interventions that build self-management capacity—such as peer mentorship programs or digital survivorship care plans—may be especially beneficial, given the evidence linking autonomy and confidence to care engagement. Additionally, interventions supporting shared decision-making to ensure high-quality decision-making may be used to coach or guide survivors on the best choice regarding their survivorship care.¹⁰⁵ At the caregiver level, information exchange is critical and also tied to trust. In particular, education among caregivers should include information about late effects to promote caregivers’ understanding and value of survivorship care, which has been shown to be a feasible and acceptable approach among caregivers and patients.¹⁰⁶ At the health care provider level, findings demonstrate that training about survivorship care is imperative to promote their understanding of and implementation of survivorship care plans, which is supported by NCI’s recommendations and development of the National Cancer Survivorship Standards.¹⁰⁷ Interventions targeting providers to promote healthy behaviors is another route to improve health outcomes for survivors and maintain care engagement.¹⁰⁸ Additionally, to facilitate the successful transition from pediatric to adult care settings for survivorship care, it is paramount to consider transition readiness of the survivor, which has been shown to be facilitated by the provider sharing knowledge and education in a tailored manner for each survivor.¹⁰⁹ And at the system level, infrastructure investments are critically needed to ensure continuity of care and support the delivery of survivorship settings. Findings also highlight the urgent need for policy efforts to standardize survivorship care reimbursement, integrate electronic care plans into EHRs, and fund navigator roles to bridge pediatric and adult care.

Table 2.

Application of Capability, Opportunity, Motivation (COM-B) Model of Behavior Change to Potential Intervention Opportunities Targeting Barriers to Survivorship Care

COM-B	Factor	Survivors, caregivers, and family	Providers, health system leaders, payers	Potential intervention and function (examples)
Capability	Psychological (knowledge)	• Survivor autonomy and independence	• PCPs lack of experience and confidence in treating survivors experiencing late effects	• Education (eg, promoting information on the importance of survivorship care)
		• Survivor emotional trauma and anxiety		• Training (eg, offering opportunity for continuing medical education)
		• Survivor emotional trauma and anxiety	• Inconsistent patient communication and compliance
		• Lack of knowledge or understanding of cancer (disease and treatment), late effects, and available resources	• Inconsistent patient communication and compliance
			• PCPs reported lack of knowledge or training
		• No local PCPs with experience in caring for cancer survivors to provide survivorship care	• PCPs reported lack of knowledge or training
	Physical (skills)	• Lack of coordination of care and difficulty navigating complex adult health system to schedule appointments	• PCPs reported having incomplete or unclear survivorship care plans and treatment history	• Environmental restructuring (eg, implementing a coordination of care model)
				• Incentivisation (eg, reimbursement mechanism to reward timely survivorship)
			• Difficult and abrupt transition from pediatric to adult care; inconsistent transition practices
		• Overdue and insufficient late effects communication
		• Loss of continuity of care when transitioning from pediatric to adult survivorship care
Opportunity	Physical (environmental resources)	• Travel large distances or transportation	• Lack of provider time	• Enablement (eg, adequate provider scheduled time)
			• Insurance coverage of recommended screening for late effects	• Enablement (eg, adequate provider scheduled time)
				• Fiscal (eg, standardize survivorship care reimbursement, integration of electronic care plans into EHRs, fund navigator roles to bridge pediatric and adult care)
		• Financial hardship/toxicity (eg, high out-of-pocket costs)
			• Lack of funding support for survivorship programs and staff
			• Inadequate resources, lack of recurrent funding, and missing infrastructure for survivorship care
		• Insurance status/coverage (eg, being uninsured, lack of coverage, need for support to manage anxiety regarding insurance)
			• Lack of survivor access to a PCP or appropriate adult services; lack of PCP involvement
		• Difficulty scheduling appointments
		• Inconvenience
		• Lack of stable or continuous housing
		• Time off work/away from home
	Social (societal influences)	• Perceived stigma	• Perceived survivor or caregiver knowledge deficit	• Environmental restructuring (eg, building self-management capacity using peer mentorship programs or digital survivorship care plans)
Motivation	Reflective (beliefs, intentions)	• Inaccurate beliefs regarding survivorship care (eg, not needed, redundant)	• PCPs indicated survivors should receive care from a specialty clinic	• Persuasion (eg, work on overcoming individual barriers)
	Automatic (emotion)	• Poor communication between care teams	• Perceived lack of survivor desire for survivorship care or to be followed by survivorship/specialist team	• Environmental restructuring (eg, making infrastructure investments in technology to ensure automated continuity of care and communication)
		• Lack of trust or confidence in care team (survivorship or PCP)
			• Perceived lack of survivor desire to leave the comfort of the treating institution or oncologist
		• Difficult and abrupt transition

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This comprehensive review is nonetheless limited by the small number of studies that have assessed reported barriers of or facilitators to survivorship care engagement among CCS, our reliance on the methodological rigor of identified studies to detect and report barriers or facilitators (eg, lack of information reported in survey studies), and the restriction to studies reported in English. Although our search strategy was intentionally broad and retrieved over eight thousand citations and built on a series of literature reviews regarding childhood cancer survivors, the topic of barriers to survivorship care is difficult to search and it is possible that some relevant studies were not retrieved. This reflects inherent challenges in systematic searching, including variations in terminology and indexing practices. In addition, we included quantitative and qualitative data eliciting the reported reasons for missing survivorship care from CCS, care givers, and healthcare providers. However, our review did not encompass predictor studies analyzing factors that are associated with attendance of survivorship care services as our prior review on disparities in pediatric cancer survivorship care.¹⁶ The review is documented in comprehensive figures and tables, but we acknowledge that due to the nature of the identified studies, no statistical pooling was possible.

There are notable limitations in the evidence base that can be addressed through future investigations. Future research should specifically prioritize addressing potential barriers and facilitators to facilitate care engagement among CCS. Furthermore, we focused on reported barriers and facilitators, rather than speculations of interest holders regarding what would be potentially helpful in the future. Nonetheless, all barriers and facilitators are those perceived by the surveyed individuals and it remains to be seen in future research studies whether minimizing or removing these barriers will result in improved adherence to recommended survivorship care. More research is needed to improve our understanding of the survivorship experience of CCS.

Conclusion

In reviewing the factors that have been identified as barriers or facilitators to engaging in survivorship care, we believe that there are numerous possible targets for interventions. Most likely, multilevel approaches are needed to intervene to alleviate barriers and enhance facilitators to improve inequities and alleviate disparities in the receipt of guideline-concordant survivorship care among CCS. Unlike previous work that primarily document disparities or interventions in isolation, this study provides a comprehensive synthesis of empirical evidence across stakeholder groups, using a QoE-based framework to prioritize intervention targets to facilitate survivorship care engagement with different models of care in a sustainable and scalable manner.

Supplemental Material

Supplemental Material - Survivorship Care After Childhood Cancer: A Systematic Review of Reported Barriers and Facilitators

sj-pdf-1-ccx-10.1177_10732748251401263.pdf^{(855.3KB, pdf)}

Supplemental Material for Survivorship Care After Childhood Cancer: A Systematic Review of Reported Barriers and Facilitators by Erin M. Mobley, Xu Ji, Joel Milam, Kimberly Miller, David R. Freyer, Carla L. Fisher, Raymond B. Mailhot Vega, Julia Stal, Carol Y. Ochoa-Dominguez, Maria Bolshakova, Naghmeh Aminzadeh, Jennifer Dinalo, Aneesa Motala, Susanne Hempel in Cancer Control.

Appendix.

Abbreviations

CCS: Childhood Cancer Survivors
QoE: Quality of Evidence
U.S.: United States
COG: Children’s Oncology Group
QUIPS: Quality In Prognostic Studies
PCPs: Primary Care Providers
COM-B: Capability, Opportunity, Motivation

Funding: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This manuscript builds on work supported by the Agency for Healthcare Research and Quality (AHRQ), U.S. Department of Health and Human Services (HHS) under Contract No. 75Q80120D00009/Task Order 75Q80120F32001. The authors of this document are responsible for its content, and the content does not necessarily represent the official views of or imply endorsement by AHRQ or HHS.

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Supplemental Material: Supplemental material for this article is available online.

ORCID iDs

Erin M. Mobley https://orcid.org/0000-0002-6278-6593

Joel Milam https://orcid.org/0000-0001-9489-8015

Julia Stal https://orcid.org/0000-0002-7911-7388

Susanne Hempel https://orcid.org/0000-0003-1597-5110

Ethical Considerations

Determined to be exempt by the Institutional Review Board at the University of Southern California (HS-20-00483).

Data Availability Statement

The data are available in the Appendix.

References

1.American Cancer Society . Childhood Cancer. American Cancer Society. https://www.cancer.org/cancer/childhood-cancer.html. Accessed 8 May 2025. [Google Scholar]
2.Siegel RL, Kratzer TB, Giaquinto AN, Sung H, Jemal A. Cancer statistics, 2025. CA Cancer J Clin. 2025;75(1):10-45. doi: 10.3322/caac.21871 [DOI] [PMC free article] [PubMed] [Google Scholar]
3.Botta L, Gatta G, Capocaccia R, et al. Long-term survival and cure fraction estimates for childhood cancer in Europe (EUROCARE-6): results from a population-based study. Lancet Oncol. 2022;23(12):1525-1536. doi: 10.1016/s1470-2045(22)00637-4 [DOI] [PubMed] [Google Scholar]
4.Ehrhardt MJ, Krull KR, Bhakta N, et al. Improving quality and quantity of life for childhood cancer survivors globally in the twenty-first century. Nat Rev Clin Oncol. 2023;20(10):678-696. doi: 10.1038/s41571-023-00802-w [DOI] [PubMed] [Google Scholar]
5.National Research Council . Childhood Cancer Survivorship: Improving Care and Quality of Life. The National Academies Press; 2003. [PubMed] [Google Scholar]
6.Erdmann F, Frederiksen LE, Bonaventure A, et al. Childhood cancer: survival, treatment modalities, late effects and improvements over time. Cancer Epidemiol. 2020;71:101733. doi: 10.1016/j.canep.2020.101733 [DOI] [PubMed] [Google Scholar]
7.Blaauwbroek R, Groenier KH, Kamps WA, Meyboom-de Jong B, Postma A. Late effects in adult survivors of childhood cancer: the need for life-long follow-up. Ann Oncol. 2007;18(11):1898-1902. doi: 10.1093/annonc/mdm336 [DOI] [PubMed] [Google Scholar]
8.Bhakta N, Liu Q, Ness KK, et al. The cumulative burden of surviving childhood cancer: an initial report from the St Jude Lifetime Cohort Study (SJLIFE). Lancet. 2017;390(10112):2569-2582. doi: 10.1016/S0140-6736(17)31610-0 [DOI] [PMC free article] [PubMed] [Google Scholar]
9.Mertens AC, Yasui Y, Neglia JP, et al. Late mortality experience in five-year survivors of childhood and adolescent cancer: the childhood cancer survivor study. J Clin Oncol. 2001;19(13):3163-3172. doi: 10.1200/JCO.2001.19.13.3163 [DOI] [PubMed] [Google Scholar]
10.Armstrong GT, Liu Q, Yasui Y, et al. Late mortality among 5-Year survivors of childhood cancer: a summary from the childhood cancer survivor study. J Clin Oncol. 2009;27(14):2328-2338. doi: 10.1200/jco.2008.21.1425 [DOI] [PMC free article] [PubMed] [Google Scholar]
11.Gurney JG, Krull KR, Kadan-Lottick NS, et al. Social outcomes in the childhood cancer survivor study cohort. J Clin Oncol. 2009;27(14):2390-2395. [DOI] [PMC free article] [PubMed] [Google Scholar]
12.Kirchhoff A, Leisenring W, Krull K, et al. Unemployment among adult survivors of childhood cancer: a report from the childhood cancer survivor study. Med Care. 2010;48(11):1015-1025. [DOI] [PMC free article] [PubMed] [Google Scholar]
13.Children's Oncology Group . Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers. Version 6.0 (October 2023). Children's Oncology Group. http://www.survivorshipguidelines.org. Accessed 14 October 2025. [DOI] [PMC free article] [PubMed]
14.Children's Oncology Group . Late effects screening guidelines. Version 1.0 (March 2003). Children's Oncology Group. https://survivorshipguidelines.org/pdf/COG20LTFU20Guidelines20Archive/Version201.0/COG_LTFU_Guidelines20and20Appendix_v1.020(secured).pdf. Accessed August 7, 2020.
15.Cox CL, Hudson MM, Mertens A, et al. Medical screening participation in the childhood cancer survivor study. Arch Intern Med. 2009;169(5):454-462. doi: 10.1001/archinternmed.2008.588 [DOI] [PMC free article] [PubMed] [Google Scholar]
16.Mobley EM, Moke DJ, Milam J, et al. Disparities in pediatric cancer survivorship care: a systematic review. Cancer Med. 2023;12(17):18281-18305. doi: 10.1002/cam4.6426 [DOI] [PMC free article] [PubMed] [Google Scholar]
17.Robison LL, Hudson MM. Survivors of childhood and adolescent cancer: life-long risks and responsibilities. Nat Rev Cancer. 2014;14(1):61-70. doi: 10.1038/nrc3634 [DOI] [PMC free article] [PubMed] [Google Scholar]
18.Mobley E, Moke D, Milam J, et al. Disparities and barriers to pediatric cancer survivorship care: a systematic review. https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021227965ID=CRD42021227965. Accessed 31 May 2023. [PubMed]
19.Technical Brief . Disparities and barriers to pediatric cancer survivorship care. In: Effective Health Care Program. Agency for Healthcare Research and Quality. https://effectivehealthcare.ahrq.gov/products/pediatric-cancer-survivorship/research. Accessed 14 October 2025. [PubMed] [Google Scholar]
20.PRISMA . PRISMA website. https://www.prisma-statement.org/. Accessed 14 October 2025.
21.Mobley EM, Moke DJ, Milam JE, et al. Disparities and barriers to pediatric cancer survivorship care. In: AHRQ Methods for Effective Health Care; 2021. doi: 10.17605/OSF.IO/D8Q7Y [DOI] [PubMed] [Google Scholar]
22.Mobley EM, Moke DJ, Milam J, et al. Interventions to address disparities and barriers to pediatric cancer survivorship care: a scoping review. J Cancer Surviv. 2022;16(3):667-676. doi: 10.1007/s11764-021-01060-4 [DOI] [PMC free article] [PubMed] [Google Scholar]
23.Hayden JA, van Der Windt DA, Cartwright JL, Côté P, Bombardier C. Assessing bias in studies of prognostic factors. Ann Intern Med. 2013;158(4):280-286. [DOI] [PubMed] [Google Scholar]
24.Huguet A, Hayden JA, Stinson J, et al. Judging the quality of evidence in reviews of prognostic factor research: adapting the GRADE framework. Syst Rev. 2013;2:71. doi: 10.1186/2046-4053-2-71 [DOI] [PMC free article] [PubMed] [Google Scholar]
25.Ahn E, Park HJ, Baek HJ, et al. Awareness about past diagnosis and treatment history: nationwide survey of childhood cancer survivors and their parents. Jpn J Clin Oncol. 2017;47(10):962-968. doi: 10.1093/jjco/hyx102 [DOI] [PubMed] [Google Scholar]
26.Aziz NM, Oeffinger KC, Brooks S, Turoff AJ. Comprehensive long-term follow-up programs for pediatric cancer survivors. Cancer. 2006;107(4):841-848. doi: 10.1002/cncr.22096 [DOI] [PubMed] [Google Scholar]
27.Berg CJ, Stratton E, Esiashvili N, Mertens A. Young adult cancer survivors' experience with cancer treatment and follow-up care and perceptions of barriers to engaging in recommended care. J Cancer Educ. 2016;31(3):430-442. doi: 10.1007/s13187-015-0853-9 [DOI] [PMC free article] [PubMed] [Google Scholar]
28.Berkman JM, Dallas J, Lim J, et al. Social determinants of health affecting treatment of pediatric brain tumors. J Neurosurg Pediatr. 2019;24:1-7. doi: 10.3171/2019.4.Peds18594 [DOI] [PMC free article] [PubMed] [Google Scholar]
29.Bouwman E, Pluijm SMF, Stollman I, et al. Healthcare professionals' perceived barriers and facilitators of health behavior support provision: a qualitative study. Cancer Med. 2023;12(6):7414-7426. doi: 10.1002/cam4.5445 [DOI] [PMC free article] [PubMed] [Google Scholar]
30.Bowers DC, Adhikari S, El-Khashab YM, Gargan L, Oeffinger KC. Survey of long-term follow-up programs in the United States for survivors of childhood brain tumors. Pediatr Blood Cancer. 2009;53(7):1295-1301. doi: 10.1002/pbc.22240 [DOI] [PubMed] [Google Scholar]
31.Cai J, Malone S, Bhakta N, et al. Accessibility of and barriers to long-term Follow-Up care for childhood cancer survivors. JAMA Netw Open. 2024;7(10):e2440258. doi: 10.1001/jamanetworkopen.2024.40258 [DOI] [PMC free article] [PubMed] [Google Scholar]
32.Casillas J, Kahn KL, Doose M, et al. Transitioning childhood cancer survivors to adult-centered healthcare: insights from parents, adolescent, and young adult survivors. Psychooncology. 2010;19(9):982-990. doi: 10.1002/pon.1650 [DOI] [PubMed] [Google Scholar]
33.Caton L, Duprez C, Flahault C, et al. A qualitative study on the transition from pediatric to adult care in oncology: how health care professionals can adapt their practice? J Adolesc Young Adult Oncol. 2024;14:43-52. doi: 10.1089/jayao.2024.0071 [DOI] [PubMed] [Google Scholar]
34.Ekaterina A, Thorsten L, Gabriele C, et al. Follow-up care needs and motivational factors for childhood cancer survivors and their parents in Germany. Sci Rep. 2025;15(1):972. doi: 10.1038/s41598-024-84156-y [DOI] [PMC free article] [PubMed] [Google Scholar]
35.Ernst M, Brähler E, Faber J, Wild PS, Merzenich H, Beutel ME. A mixed-methods investigation of medical Follow-Up in long-term childhood cancer survivors: what are the reasons for Non-attendance? Front Psychol. 2022;13:846671. doi: 10.3389/fpsyg.2022.846671 [DOI] [PMC free article] [PubMed] [Google Scholar]
36.Eshelman-Kent D, Kinahan KE, Hobbie W, et al. Cancer survivorship practices, services, and delivery: a report from the Children's Oncology Group (COG) nursing discipline, adolescent/young adult, and late effects committees. J Cancer Surviv. 2011;5(4):345-357. doi: 10.1007/s11764-011-0192-8 [DOI] [PMC free article] [PubMed] [Google Scholar]
37.Fisher AP, Patronick J, Moscato EL, et al. Barriers to care and perceived need for mental health services among adolescent and emerging adult survivors of pediatric brain tumors. J Adolesc Young Adult Oncol. 2024;13(3):469-480. doi: 10.1089/jayao.2023.0119 [DOI] [PMC free article] [PubMed] [Google Scholar]
38.Flores DN, Moerdler S, Palmisiano N, Parsons SK, Roth ME, Devine KA. Transition to survivorship care for Adolescents and Young Adults (AYAs) with acute leukemia: provider perspectives. J Adolesc Young Adult Oncol. 2025;14:434-441. doi: 10.1089/jayao.2024.0139 [DOI] [PubMed] [Google Scholar]
39.Frederick NN, Bober SL, Berwick L, Tower M, Kenney LB. Preparing childhood cancer survivors for transition to adult care: the young adult perspective. Pediatr Blood Cancer. 2017;64(10):e26544. doi: 10.1002/pbc.26544 [DOI] [PubMed] [Google Scholar]
40.Gardner MH, Barnes MJ, Bopanna S, et al. Barriers to the use of psychosocial support services among adolescent and young adult survivors of pediatric cancer. J Adolesc Young Adult Oncol. 2014;3(3):112-116. doi: 10.1089/jayao.2013.0036 [DOI] [PMC free article] [PubMed] [Google Scholar]
41.Granek L, Nathan PC, Rosenberg-Yunger ZR, et al. Psychological factors impacting transition from paediatric to adult care by childhood cancer survivors. J Cancer Surviv. 2012;6(3):260-269. doi: 10.1007/s11764-012-0223-0 [DOI] [PubMed] [Google Scholar]
42.Henderson TO, Hlubocky FJ, Wroblewski KE, Diller L, Daugherty CK. Physician preferences and knowledge gaps regarding the care of childhood cancer survivors: a mailed survey of pediatric oncologists. J Clin Oncol. 2010;28(5):878-883. doi: 10.1200/JCO.2009.25.6107 [DOI] [PMC free article] [PubMed] [Google Scholar]
43.Howard AF, Kazanjian A, Pritchard S, et al. Healthcare system barriers to long-term follow-up for adult survivors of childhood cancer in British Columbia, Canada: a qualitative study. J Cancer Surviv. 2018;12(3):277-290. doi: 10.1007/s11764-017-0667-3 [DOI] [PMC free article] [PubMed] [Google Scholar]
44.Iyer NS, Mitchell HR, Zheng DJ, Ross WL, Kadan-Lottick NS. Experiences with the survivorship care plan in primary care providers of childhood cancer survivors: a mixed methods approach. Support Care Cancer. 2017;25(5):1547-1555. doi: 10.1007/s00520-016-3544-0 [DOI] [PubMed] [Google Scholar]
45.Keats MR, Shea K, Parker L, Stewart SA, Flanders A, Bernstein M. After childhood cancer: a qualitative study of family physician, parent/guardian, and survivor information needs and perspectives on long-term Follow-up and survivorship care plans. J Cancer Educ. 2019;34(4):638-646. doi: 10.1007/s13187-018-1349-1 [DOI] [PubMed] [Google Scholar]
46.Kirchhoff AC, Montenegro RE, Warner EL, et al. Childhood cancer survivors' primary care and follow-up experiences. Support Care Cancer. 2014;22(6):1629-1635. doi: 10.1007/s00520-014-2130-6 [DOI] [PMC free article] [PubMed] [Google Scholar]
47.Knighting K, Kirton JA, Thorp N, Hayden J, Appleton L, Bray L. A study of childhood cancer survivors' engagement with long-term follow-up care: ‘to attend or not to attend, that is the question. Eur J Oncol Nurs. 2020;45:101728. doi: 10.1016/j.ejon.2020.101728 [DOI] [PubMed] [Google Scholar]
48.Krauss V, Mertens A, Marchak JG, et al. Clinic reported facilitators and barriers to pediatric cancer survivor care delivery among survivorship clinics: a fishbone analysis. Pediatr Blood Cancer. 2023;70(8):e30480. doi: 10.1002/pbc.30480 [DOI] [PMC free article] [PubMed] [Google Scholar]
49.Luckett T, DiGiacomo M, Heneka N, et al. A qualitative study of specialist multidisciplinary clinician perspectives on barriers/facilitators to care for children with brain cancer and their families: “We’re a little bit different to our adult counterparts”. Palliat Support Care. 2024;22(6):2096-2101. doi: 10.1017/s1478951524001421 [DOI] [PubMed] [Google Scholar]
50.Maeda N, Horibe K, Kato K, Kojima S, Tsurusawa M. Survey of childhood cancer survivors who stopped follow-up physician visits. Pediatr Int. 2010;52(5):806-812. doi: 10.1111/j.1442-200X.2010.03158.x [DOI] [PubMed] [Google Scholar]
51.Michel G, Kuehni CE, Rebholz CE, et al. Can health beliefs help in explaining attendance to follow-up care? The Swiss childhood cancer survivor study. Psychooncology. 2011;20(10):1034. doi: 10.1002/pon.1823 [DOI] [PubMed] [Google Scholar]
52.Milam JE, Meeske K, Slaughter RI, et al. Cancer-related follow-up care among Hispanic and Non-Hispanic childhood cancer survivors: the project forward study. Cancer. 2015;121(4):605-613. doi: 10.1002/cncr.29105 [DOI] [PMC free article] [PubMed] [Google Scholar]
53.Miller BM, Yockel MR, Appel BE, et al. Multilevel facilitators and barriers to healthcare organization and delivery among childhood cancer survivors. Pediatr Blood Cancer. 2025;72(2):e31435. doi: 10.1002/pbc.31435 [DOI] [PubMed] [Google Scholar]
54.Mouw MS, Wertman EA, Barrington C, Earp JA. Care transitions in childhood cancer survivorship: providers' perspectives. J Adolesc Young Adult Oncol. 2017;6(1):111-119. doi: 10.1089/jayao.2016.0035 [DOI] [PMC free article] [PubMed] [Google Scholar]
55.Nicklin E, Pointon L, Glaser A, et al. Unmet support needs in teenage and young adult childhood brain tumour survivors and their caregivers: “it's all the aftermath, and then you're forgotten about”. Support Care Cancer. 2021;29(11):6315-6324. doi: 10.1007/s00520-021-06193-x [DOI] [PMC free article] [PubMed] [Google Scholar]
56.Oeffinger KC, Mertens AC, Hudson MM, et al. Health care of young adult survivors of childhood cancer: a report from the childhood cancer survivor study. Ann Fam Med. 2004;2(1):61-70. [DOI] [PMC free article] [PubMed] [Google Scholar]
57.Paul V, Inhestern L, Sigmund D, et al. Addressing gaps and enhancing experiences in support services for families of pediatric cancer survivors. Pediatr Res. 2025;98(1):168-173. doi: 10.1038/s41390-024-03320-2 [DOI] [PMC free article] [PubMed] [Google Scholar]
58.Pettit T, Proffit E, Reid J, et al. “I don't have to be sick to still be worthy”: the barriers experienced by adolescent and young adult cancer survivors in New Zealand. J Adolesc Young Adult Oncol. 2023;12(3):366-375. doi: 10.1089/jayao.2022.0051 [DOI] [PubMed] [Google Scholar]
59.Quillen J, Bradley H, Calamaro C. Identifying barriers among childhood cancer survivors transitioning to adult health care. J Pediatr Oncol Nurs. 2017;34(1):20-27. doi: 10.1177/1043454216631953 [DOI] [PubMed] [Google Scholar]
60.Racine S, Sanchez O, Lemonde M, Taccone MS, Schulte F. Unveiling perspectives on the psychosocial impacts of childhood cancer survival on young adult survivors' reassimilation journey: a qualitative exploration. Can Oncol Nurs J. 2024;34(2):179-195. doi: 10.5737/23688076342179 [DOI] [PMC free article] [PubMed] [Google Scholar]
61.Ross WL, Mitchell HR, Iyer NS, Santacroce SJ, Kadan-Lottick NS. Impact of survivorship care on young adult survivors of childhood cancer with post-traumatic stress symptoms. Oncol Nurs Forum. 2019;46(1):33-43. doi: 10.1188/19.Onf.33-43 [DOI] [PubMed] [Google Scholar]
62.Ryan D, Chafe R, Moorehead P. Transition from pediatric to adult aftercare for survivors of pediatric cancer in newfoundland and labrador: a qualitative study. CMAJ Open. 2021;9(2):E309-E316. doi: 10.9778/cmajo.20200134 [DOI] [PMC free article] [PubMed] [Google Scholar]
63.Sadak KT, Dinofia A, Reaman G. Patient-perceived facilitators in the transition of care for young adult survivors of childhood cancer. Pediatr Blood Cancer. 2013;60(8):1365-1368. doi: 10.1002/pbc.24494 [DOI] [PubMed] [Google Scholar]
64.Sadak KT, Neglia JP, Freyer DR, Harwood E. Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative study of survivorship providers. Pediatr Blood Cancer. 2017;64(11):e26587. doi: 10.1002/pbc.26587 [DOI] [PMC free article] [PubMed] [Google Scholar]
65.Sadak KT, Gemeda MT, Grafelman M, et al. Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative interview study of survivors. BMC Cancer. 2020;20(1):898. doi: 10.1186/s12885-020-07360-9 [DOI] [PMC free article] [PubMed] [Google Scholar]
66.Signorelli C, Høeg BL, Asuzu C, et al. International survey of psychosocial care for cancer survivors in Low-/Middle- and high-income countries: current practices, barriers, and facilitators to care. JCO Glob Oncol. 2024;10:e2300418. doi: 10.1200/go.23.00418 [DOI] [PubMed] [Google Scholar]
67.Sima JL, Perkins SM, Haggstrom DA. Primary care physician perceptions of adult survivors of childhood cancer. J Pediatr Hematol Oncol. 2014;36:118-124. doi: 10.1097/mph.0000000000000061 [DOI] [PMC free article] [PubMed] [Google Scholar]
68.Szalda D, Pierce L, Hobbie W, et al. Engagement and experience with cancer-related follow-up care among young adult survivors of childhood cancer after transfer to adult care. J Cancer Surviv. 2016;10(2):342-350. doi: 10.1007/s11764-015-0480-9 [DOI] [PubMed] [Google Scholar]
69.Toenne R, Baumeister R, Koch A, Lindhorst K, Reinhardt D, Kremeike K. Network oncolgy specialist advisory service - A survey of the psychosocial situation of long term cancer survivors during childhood or adolescents. Klin Padiatr. 2022;234(3):138-145. doi: 10.1055/a-1662-5336. Netzwerk für Onkologische Fachberatung – Fragebogenstudie zur Psychosozialen Situation von Survivorn einer Krebserkrankung im Kindes- oder Jugendalter. [DOI] [PubMed] [Google Scholar]
70.van Laar M, Glaser A, Phillips RS, Feltbower RG, Stark DP. The impact of a managed transition of care upon psychosocial characteristics and patient satisfaction in a cohort of adult survivors of childhood cancer. Psychooncology. 2013;22(9):2039-2045. doi: 10.1002/pon.3248 [DOI] [PubMed] [Google Scholar]
71.Vetsch J, Fardell JE, Wakefield CE, et al. “Forewarned and forearmed”: long-term childhood cancer survivors' and parents' information needs and implications for survivorship models of care. Patient Educ Couns. 2017;100(2):355-363. doi: 10.1016/j.pec.2016.09.013 [DOI] [PubMed] [Google Scholar]
72.Viola AS, Levonyan-Radloff K, Masterson M, Manne SL, Hudson SV, Devine KA. Development of a self-management and peer-mentoring intervention to improve transition readiness among young adult survivors of pediatric cancer: formative qualitative research study. JMIR Form Res. 2022;6(8):e36323. doi: 10.2196/36323 [DOI] [PMC free article] [PubMed] [Google Scholar]
73.Warner EL, Montenegro RE, Stroup A, Kinney AY, Kirchhoff AC. Health care concerns of rural childhood cancer survivors. J Health Care Poor Underserved. 2014;25(2):901-912. doi: 10.1353/hpu.2014.0095 [DOI] [PubMed] [Google Scholar]
74.Ekaterina A, Thorsten L, Gabriele C, Juliane G, Swart E, Baust K. Stepping into adulthood: pediatric cancer survivors and their parents' perspectives on the transition from pediatric to adult care. BMC Health Serv Res. 2025;25(1):204. doi: 10.1186/s12913-025-12326-3 [DOI] [PMC free article] [PubMed] [Google Scholar]
75.Aleshchenko E, Langer T, Calaminus G, Gebauer J, Swart E, Baust K. Organizing long-term follow-up care for pediatric cancer survivors: a socio-ecological approach. Front Public Health. 2025;13:1524310. doi: 10.3389/fpubh.2025.1524310 [DOI] [PMC free article] [PubMed] [Google Scholar]
76.Effinger KE, Haardörfer R, Marchak JG, et al. Current pediatric cancer survivorship practices: a report from the Children's Oncology Group. J Cancer Surviv. 2023;17(4):1139-1148. doi: 10.1007/s11764-021-01157-w [DOI] [PMC free article] [PubMed] [Google Scholar]
77.Rosenberg-Yunger ZR, Klassen AF, Amin L, et al. Barriers and facilitators of transition from pediatric to adult long-term Follow-Up care in childhood cancer survivors. J Adolesc Young Adult Oncol. 2013;2(3):104-111. doi: 10.1089/jayao.2013.0003 [DOI] [PubMed] [Google Scholar]
78.Michel G, Gianinazzi ME, Eiser C, et al. Preferences for long-term follow-up care in childhood cancer survivors. Eur J Cancer Care. 2016;25(6):1024-1033. doi: 10.1111/ecc.12560 [DOI] [PubMed] [Google Scholar]
79.Michel G, Gianinazzi ME, Vetsch J, et al. Physicians' experience with follow-up care of childhood cancer survivors - challenges and needs. Swiss Med Wkly. 2017;147:w14457. doi: 10.4414/smw.2017.14457 [DOI] [PubMed] [Google Scholar]
80.Hendriks MJ, Harju E, Roser K, Ienca M, Michel G. The long shadow of childhood cancer: a qualitative study on insurance hardship among survivors of childhood cancer. BMC Health Serv Res. 2021;21(1):503. doi: 10.1186/s12913-021-06543-9 [DOI] [PMC free article] [PubMed] [Google Scholar]
81.Vetsch J, Rueegg CS, Mader L, et al. Follow-up care of young childhood cancer survivors: attendance and parental involvement. Support Care Cancer. 2016;24(7):3127-3138. doi: 10.1007/s00520-016-3121-6 [DOI] [PubMed] [Google Scholar]
82.Baenziger J, Roser K, Mader L, et al. Can the theory of planned behavior help explain attendance to follow‐up care of childhood cancer survivors? Psychooncology. 2018;27(6):1501-1508. doi: 10.1002/pon.4680 [DOI] [PubMed] [Google Scholar]
83.Hendriks MJ, Harju E, Michel G. The unmet needs of childhood cancer survivors in long-term follow-up care: a qualitative study. Psychooncology. 2021;30(4):485-492. doi: 10.1002/pon.5593 [DOI] [PMC free article] [PubMed] [Google Scholar]
84.Wojcik KY, Miller KA, Wysong A, et al. Barriers to physician-based skin examinations for adolescent and young adult survivors of melanoma in the project forward study. JAMA Dermatol. 2021;157(7):874-876. doi: 10.1001/jamadermatol.2021.1850 [DOI] [PMC free article] [PubMed] [Google Scholar]
85.Milam J, Freyer DR, Miller KA, et al. Project forward: a population-based cohort among young adult survivors of childhood cancers. JNCI Cancer Spectr. 2021;5(5):pkab068. doi: 10.1093/jncics/pkab068 [DOI] [PMC free article] [PubMed] [Google Scholar]
86.Park ER, Kirchhoff AC, Zallen JP, et al. Childhood cancer survivor study participants' perceptions and knowledge of health insurance coverage: implications for the affordable care act. J Cancer Surviv. 2012;6(3):251-259. doi: 10.1007/s11764-012-0225-y [DOI] [PMC free article] [PubMed] [Google Scholar]
87.Park ER, Kirchhoff AC, Nipp RD, et al. Assessing health insurance coverage characteristics and impact on health care cost, worry, and access: a report from the childhood cancer survivor study. JAMA Intern Med. 2017;177(12):1855-1858. doi: 10.1001/jamainternmed.2017.5047 [DOI] [PMC free article] [PubMed] [Google Scholar]
88.Nathan PC, Ness KK, Mahoney MC, et al. Screening and surveillance for second malignant neoplasms in adult survivors of childhood cancer: a report from the childhood cancer survivor study. Ann Intern Med. 2010;153(7):442-451. doi: 10.7326/0003-4819-153-7-201010050-00007 [DOI] [PMC free article] [PubMed] [Google Scholar]
89.Geller AC, Keske RR, Haneuse S, et al. Skin cancer early detection practices among adult survivors of childhood cancer treated with radiation. J Invest Dermatol. 2019;139(9):1898-1905. doi: 10.1016/j.jid.2019.02.033 [DOI] [PMC free article] [PubMed] [Google Scholar]
90.Ford JS, Tonorezos ES, Mertens AC, et al. Barriers and facilitators of risk-based health care for adult survivors of childhood cancer: a report from the childhood cancer survivor study. Cancer. 2020;126(3):619-627. doi: 10.1002/cncr.32568 [DOI] [PMC free article] [PubMed] [Google Scholar]
91.Smith SM, Ford JS, Rakowski W, et al. Inconsistent mammography perceptions and practices among women at risk of breast cancer following a pediatric malignancy: a report from the childhood cancer survivor study. Cancer Causes Control. 2010;21(10):1585-1595. doi: 10.1007/s10552-010-9587-5 [DOI] [PMC free article] [PubMed] [Google Scholar]
92.Kirchhoff AC, Kuhlthau K, Pajolek H, et al. Employer-sponsored health insurance coverage limitations: results from the childhood cancer survivor study. Support Care Cancer. 2013;21(2):377-383. doi: 10.1007/s00520-012-1523-7 [DOI] [PMC free article] [PubMed] [Google Scholar]
93.Kang L, Kadan-Lottick NS, Rotatori J, et al. Patterns of physical therapy referral and subsequent attendance among childhood cancer survivors with chemotherapy-induced peripheral neuropathy at a regional childhood cancer survivorship Clinic. Semin Oncol Nurs. 2024;40(5):151716. doi: 10.1016/j.soncn.2024.151716 [DOI] [PubMed] [Google Scholar]
94.Szalda D, Piece L, Brumley L, et al. Associates of engagement in adult-oriented Follow-Up care for childhood cancer survivors. J Adolesc Health. 2017;60(2):147-153. doi: 10.1016/j.jadohealth.2016.08.018 [DOI] [PMC free article] [PubMed] [Google Scholar]
95.Signorelli C, Wakefield CE, Fardell JE, et al. The role of primary care physicians in childhood cancer survivorship care: multiperspective interviews. Oncologist. 2019;24(5):710-719. doi: 10.1634/theoncologist.2018-0103 [DOI] [PMC free article] [PubMed] [Google Scholar]
96.Nandakumar BS, Fardell JE, Wakefield CE, et al. Attitudes and experiences of childhood cancer survivors transitioning from pediatric care to adult care. Support Care Cancer. 2018;26(8):2743-2750. doi: 10.1007/s00520-018-4077-5 [DOI] [PubMed] [Google Scholar]
97.Signorelli C, Wakefield CE, McLoone JK, et al. Models of childhood cancer survivorship care in Australia and New Zealand: strengths and challenges. Asia Pac J Clin Oncol. 2017;13(6):407-415. doi: 10.1111/ajco.12700 [DOI] [PubMed] [Google Scholar]
98.Hill RE, Mercieca-Bebber R, Fardell JE, et al. Relationship between survivorship care plans and unmet information needs, quality of life, satisfaction with care, and propensity to engage with, and attend, follow-up care. Cancer. 2023;129(23):3820-3832. doi: 10.1002/cncr.34984 [DOI] [PMC free article] [PubMed] [Google Scholar]
99.Signorelli C, Wakefield CE, McLoone JK, et al. Childhood cancer survivors' reported late effects, motivations for seeking survivorship care, and patterns of attendance. Oncologist. 2023;28(5):e276-e286. doi: 10.1093/oncolo/oyad004 [DOI] [PMC free article] [PubMed] [Google Scholar]
100.Miller KD, Nogueira L, Devasia T, et al. Cancer treatment and survivorship statistics, 2022. CA Cancer J Clin. 2022;72(5):409-436. doi: 10.3322/caac.21731 [DOI] [PubMed] [Google Scholar]
101.Kagramanov D, Sutradhar R, Lau C, et al. Impact of the model of long-term follow-up care on adherence to guideline-recommended surveillance among survivors of adolescent and young adult cancers. Cancer Med. 2021;10(15):5078-5087. doi: 10.1002/cam4.4058 [DOI] [PMC free article] [PubMed] [Google Scholar]
102.Agency for Healthcare Research and Quality . Updating the Framework and Measurement Criteria for AHRQ'S National Healthcare Quality and Disparities Report. Agency for Healthcare Research and Quality. https://effectivehealthcare.ahrq.gov/products/collections/ahrq-nhqdr. Accessed 23 May 2025. [Google Scholar]
103.Stal J, Piombo SE, Kysh L, et al. The integration of primary care and childhood cancer survivorship care: a scoping review. J Cancer Surviv. 2022;18:635-650. doi: 10.1007/s11764-022-01296-8 [DOI] [PubMed] [Google Scholar]
104.Michie S, van Stralen MM, West R. The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implement Sci. 2011;6(1):42. doi: 10.1186/1748-5908-6-42 [DOI] [PMC free article] [PubMed] [Google Scholar]
105.Wu LM, Huang IC, Su HL, Lee SL. Interventions to support adolescents with cancer in decision-making: a systematic review and meta-analysis. Worldviews Evid Based Nurs. 2021;18(6):339-349. doi: 10.1111/wvn.12522 [DOI] [PubMed] [Google Scholar]
106.Bingen K, Karst J, Anderson L, et al. Evaluation of a transition to survivorship program for pediatric, adolescent, and young adult cancer patients and caregivers. Pediatr Blood Cancer. 2023;70(5):e30277. doi: 10.1002/pbc.30277 [DOI] [PubMed] [Google Scholar]
107.Mollica MA, McWhirter G, Tonorezos E, et al. Developing national cancer survivorship standards to inform quality of care in the United States using a consensus approach. J Cancer Surviv. 2024;18(4):1190-1199. doi: 10.1007/s11764-024-01602-6 [DOI] [PMC free article] [PubMed] [Google Scholar]
108.de Beijer IAE, Bouwman E, Mulder RL, et al. Barriers, facilitators, and other factors associated with health behaviors in childhood, adolescent, and young adult cancer survivors: a systematic review. Cancer Med. 2024;13(12):e7361. doi: 10.1002/cam4.7361 [DOI] [PMC free article] [PubMed] [Google Scholar]
109.Otth M, Denzler S, Koenig C, Koehler H, Scheinemann K. Transition from pediatric to adult follow-up care in childhood cancer survivors-a systematic review. J Cancer Surviv. 2021;15(1):151-162. doi: 10.1007/s11764-020-00920-9 [DOI] [PubMed] [Google Scholar]

Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Supplemental Material - Survivorship Care After Childhood Cancer: A Systematic Review of Reported Barriers and Facilitators

sj-pdf-1-ccx-10.1177_10732748251401263.pdf^{(855.3KB, pdf)}

Data Availability Statement

The data are available in the Appendix.

[bibr1-10732748251401263] 1.American Cancer Society . Childhood Cancer. American Cancer Society. https://www.cancer.org/cancer/childhood-cancer.html. Accessed 8 May 2025. [Google Scholar]

[bibr2-10732748251401263] 2.Siegel RL, Kratzer TB, Giaquinto AN, Sung H, Jemal A. Cancer statistics, 2025. CA Cancer J Clin. 2025;75(1):10-45. doi: 10.3322/caac.21871 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr3-10732748251401263] 3.Botta L, Gatta G, Capocaccia R, et al. Long-term survival and cure fraction estimates for childhood cancer in Europe (EUROCARE-6): results from a population-based study. Lancet Oncol. 2022;23(12):1525-1536. doi: 10.1016/s1470-2045(22)00637-4 [DOI] [PubMed] [Google Scholar]

[bibr4-10732748251401263] 4.Ehrhardt MJ, Krull KR, Bhakta N, et al. Improving quality and quantity of life for childhood cancer survivors globally in the twenty-first century. Nat Rev Clin Oncol. 2023;20(10):678-696. doi: 10.1038/s41571-023-00802-w [DOI] [PubMed] [Google Scholar]

[bibr5-10732748251401263] 5.National Research Council . Childhood Cancer Survivorship: Improving Care and Quality of Life. The National Academies Press; 2003. [PubMed] [Google Scholar]

[bibr6-10732748251401263] 6.Erdmann F, Frederiksen LE, Bonaventure A, et al. Childhood cancer: survival, treatment modalities, late effects and improvements over time. Cancer Epidemiol. 2020;71:101733. doi: 10.1016/j.canep.2020.101733 [DOI] [PubMed] [Google Scholar]

[bibr7-10732748251401263] 7.Blaauwbroek R, Groenier KH, Kamps WA, Meyboom-de Jong B, Postma A. Late effects in adult survivors of childhood cancer: the need for life-long follow-up. Ann Oncol. 2007;18(11):1898-1902. doi: 10.1093/annonc/mdm336 [DOI] [PubMed] [Google Scholar]

[bibr8-10732748251401263] 8.Bhakta N, Liu Q, Ness KK, et al. The cumulative burden of surviving childhood cancer: an initial report from the St Jude Lifetime Cohort Study (SJLIFE). Lancet. 2017;390(10112):2569-2582. doi: 10.1016/S0140-6736(17)31610-0 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr9-10732748251401263] 9.Mertens AC, Yasui Y, Neglia JP, et al. Late mortality experience in five-year survivors of childhood and adolescent cancer: the childhood cancer survivor study. J Clin Oncol. 2001;19(13):3163-3172. doi: 10.1200/JCO.2001.19.13.3163 [DOI] [PubMed] [Google Scholar]

[bibr10-10732748251401263] 10.Armstrong GT, Liu Q, Yasui Y, et al. Late mortality among 5-Year survivors of childhood cancer: a summary from the childhood cancer survivor study. J Clin Oncol. 2009;27(14):2328-2338. doi: 10.1200/jco.2008.21.1425 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr11-10732748251401263] 11.Gurney JG, Krull KR, Kadan-Lottick NS, et al. Social outcomes in the childhood cancer survivor study cohort. J Clin Oncol. 2009;27(14):2390-2395. [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr12-10732748251401263] 12.Kirchhoff A, Leisenring W, Krull K, et al. Unemployment among adult survivors of childhood cancer: a report from the childhood cancer survivor study. Med Care. 2010;48(11):1015-1025. [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr13-10732748251401263] 13.Children's Oncology Group . Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers. Version 6.0 (October 2023). Children's Oncology Group. http://www.survivorshipguidelines.org. Accessed 14 October 2025. [DOI] [PMC free article] [PubMed]

[bibr14-10732748251401263] 14.Children's Oncology Group . Late effects screening guidelines. Version 1.0 (March 2003). Children's Oncology Group. https://survivorshipguidelines.org/pdf/COG20LTFU20Guidelines20Archive/Version201.0/COG_LTFU_Guidelines20and20Appendix_v1.020(secured).pdf. Accessed August 7, 2020.

[bibr15-10732748251401263] 15.Cox CL, Hudson MM, Mertens A, et al. Medical screening participation in the childhood cancer survivor study. Arch Intern Med. 2009;169(5):454-462. doi: 10.1001/archinternmed.2008.588 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr16-10732748251401263] 16.Mobley EM, Moke DJ, Milam J, et al. Disparities in pediatric cancer survivorship care: a systematic review. Cancer Med. 2023;12(17):18281-18305. doi: 10.1002/cam4.6426 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr17-10732748251401263] 17.Robison LL, Hudson MM. Survivors of childhood and adolescent cancer: life-long risks and responsibilities. Nat Rev Cancer. 2014;14(1):61-70. doi: 10.1038/nrc3634 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr18-10732748251401263] 18.Mobley E, Moke D, Milam J, et al. Disparities and barriers to pediatric cancer survivorship care: a systematic review. https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021227965ID=CRD42021227965. Accessed 31 May 2023. [PubMed]

[bibr19-10732748251401263] 19.Technical Brief . Disparities and barriers to pediatric cancer survivorship care. In: Effective Health Care Program. Agency for Healthcare Research and Quality. https://effectivehealthcare.ahrq.gov/products/pediatric-cancer-survivorship/research. Accessed 14 October 2025. [PubMed] [Google Scholar]

[bibr20-10732748251401263] 20.PRISMA . PRISMA website. https://www.prisma-statement.org/. Accessed 14 October 2025.

[bibr21-10732748251401263] 21.Mobley EM, Moke DJ, Milam JE, et al. Disparities and barriers to pediatric cancer survivorship care. In: AHRQ Methods for Effective Health Care; 2021. doi: 10.17605/OSF.IO/D8Q7Y [DOI] [PubMed] [Google Scholar]

[bibr22-10732748251401263] 22.Mobley EM, Moke DJ, Milam J, et al. Interventions to address disparities and barriers to pediatric cancer survivorship care: a scoping review. J Cancer Surviv. 2022;16(3):667-676. doi: 10.1007/s11764-021-01060-4 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr23-10732748251401263] 23.Hayden JA, van Der Windt DA, Cartwright JL, Côté P, Bombardier C. Assessing bias in studies of prognostic factors. Ann Intern Med. 2013;158(4):280-286. [DOI] [PubMed] [Google Scholar]

[bibr24-10732748251401263] 24.Huguet A, Hayden JA, Stinson J, et al. Judging the quality of evidence in reviews of prognostic factor research: adapting the GRADE framework. Syst Rev. 2013;2:71. doi: 10.1186/2046-4053-2-71 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr25-10732748251401263] 25.Ahn E, Park HJ, Baek HJ, et al. Awareness about past diagnosis and treatment history: nationwide survey of childhood cancer survivors and their parents. Jpn J Clin Oncol. 2017;47(10):962-968. doi: 10.1093/jjco/hyx102 [DOI] [PubMed] [Google Scholar]

[bibr26-10732748251401263] 26.Aziz NM, Oeffinger KC, Brooks S, Turoff AJ. Comprehensive long-term follow-up programs for pediatric cancer survivors. Cancer. 2006;107(4):841-848. doi: 10.1002/cncr.22096 [DOI] [PubMed] [Google Scholar]

[bibr27-10732748251401263] 27.Berg CJ, Stratton E, Esiashvili N, Mertens A. Young adult cancer survivors' experience with cancer treatment and follow-up care and perceptions of barriers to engaging in recommended care. J Cancer Educ. 2016;31(3):430-442. doi: 10.1007/s13187-015-0853-9 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr28-10732748251401263] 28.Berkman JM, Dallas J, Lim J, et al. Social determinants of health affecting treatment of pediatric brain tumors. J Neurosurg Pediatr. 2019;24:1-7. doi: 10.3171/2019.4.Peds18594 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr29-10732748251401263] 29.Bouwman E, Pluijm SMF, Stollman I, et al. Healthcare professionals' perceived barriers and facilitators of health behavior support provision: a qualitative study. Cancer Med. 2023;12(6):7414-7426. doi: 10.1002/cam4.5445 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr30-10732748251401263] 30.Bowers DC, Adhikari S, El-Khashab YM, Gargan L, Oeffinger KC. Survey of long-term follow-up programs in the United States for survivors of childhood brain tumors. Pediatr Blood Cancer. 2009;53(7):1295-1301. doi: 10.1002/pbc.22240 [DOI] [PubMed] [Google Scholar]

[bibr31-10732748251401263] 31.Cai J, Malone S, Bhakta N, et al. Accessibility of and barriers to long-term Follow-Up care for childhood cancer survivors. JAMA Netw Open. 2024;7(10):e2440258. doi: 10.1001/jamanetworkopen.2024.40258 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr32-10732748251401263] 32.Casillas J, Kahn KL, Doose M, et al. Transitioning childhood cancer survivors to adult-centered healthcare: insights from parents, adolescent, and young adult survivors. Psychooncology. 2010;19(9):982-990. doi: 10.1002/pon.1650 [DOI] [PubMed] [Google Scholar]

[bibr33-10732748251401263] 33.Caton L, Duprez C, Flahault C, et al. A qualitative study on the transition from pediatric to adult care in oncology: how health care professionals can adapt their practice? J Adolesc Young Adult Oncol. 2024;14:43-52. doi: 10.1089/jayao.2024.0071 [DOI] [PubMed] [Google Scholar]

[bibr34-10732748251401263] 34.Ekaterina A, Thorsten L, Gabriele C, et al. Follow-up care needs and motivational factors for childhood cancer survivors and their parents in Germany. Sci Rep. 2025;15(1):972. doi: 10.1038/s41598-024-84156-y [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr35-10732748251401263] 35.Ernst M, Brähler E, Faber J, Wild PS, Merzenich H, Beutel ME. A mixed-methods investigation of medical Follow-Up in long-term childhood cancer survivors: what are the reasons for Non-attendance? Front Psychol. 2022;13:846671. doi: 10.3389/fpsyg.2022.846671 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr36-10732748251401263] 36.Eshelman-Kent D, Kinahan KE, Hobbie W, et al. Cancer survivorship practices, services, and delivery: a report from the Children's Oncology Group (COG) nursing discipline, adolescent/young adult, and late effects committees. J Cancer Surviv. 2011;5(4):345-357. doi: 10.1007/s11764-011-0192-8 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr37-10732748251401263] 37.Fisher AP, Patronick J, Moscato EL, et al. Barriers to care and perceived need for mental health services among adolescent and emerging adult survivors of pediatric brain tumors. J Adolesc Young Adult Oncol. 2024;13(3):469-480. doi: 10.1089/jayao.2023.0119 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr38-10732748251401263] 38.Flores DN, Moerdler S, Palmisiano N, Parsons SK, Roth ME, Devine KA. Transition to survivorship care for Adolescents and Young Adults (AYAs) with acute leukemia: provider perspectives. J Adolesc Young Adult Oncol. 2025;14:434-441. doi: 10.1089/jayao.2024.0139 [DOI] [PubMed] [Google Scholar]

[bibr39-10732748251401263] 39.Frederick NN, Bober SL, Berwick L, Tower M, Kenney LB. Preparing childhood cancer survivors for transition to adult care: the young adult perspective. Pediatr Blood Cancer. 2017;64(10):e26544. doi: 10.1002/pbc.26544 [DOI] [PubMed] [Google Scholar]

[bibr40-10732748251401263] 40.Gardner MH, Barnes MJ, Bopanna S, et al. Barriers to the use of psychosocial support services among adolescent and young adult survivors of pediatric cancer. J Adolesc Young Adult Oncol. 2014;3(3):112-116. doi: 10.1089/jayao.2013.0036 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr41-10732748251401263] 41.Granek L, Nathan PC, Rosenberg-Yunger ZR, et al. Psychological factors impacting transition from paediatric to adult care by childhood cancer survivors. J Cancer Surviv. 2012;6(3):260-269. doi: 10.1007/s11764-012-0223-0 [DOI] [PubMed] [Google Scholar]

[bibr42-10732748251401263] 42.Henderson TO, Hlubocky FJ, Wroblewski KE, Diller L, Daugherty CK. Physician preferences and knowledge gaps regarding the care of childhood cancer survivors: a mailed survey of pediatric oncologists. J Clin Oncol. 2010;28(5):878-883. doi: 10.1200/JCO.2009.25.6107 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr43-10732748251401263] 43.Howard AF, Kazanjian A, Pritchard S, et al. Healthcare system barriers to long-term follow-up for adult survivors of childhood cancer in British Columbia, Canada: a qualitative study. J Cancer Surviv. 2018;12(3):277-290. doi: 10.1007/s11764-017-0667-3 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr44-10732748251401263] 44.Iyer NS, Mitchell HR, Zheng DJ, Ross WL, Kadan-Lottick NS. Experiences with the survivorship care plan in primary care providers of childhood cancer survivors: a mixed methods approach. Support Care Cancer. 2017;25(5):1547-1555. doi: 10.1007/s00520-016-3544-0 [DOI] [PubMed] [Google Scholar]

[bibr45-10732748251401263] 45.Keats MR, Shea K, Parker L, Stewart SA, Flanders A, Bernstein M. After childhood cancer: a qualitative study of family physician, parent/guardian, and survivor information needs and perspectives on long-term Follow-up and survivorship care plans. J Cancer Educ. 2019;34(4):638-646. doi: 10.1007/s13187-018-1349-1 [DOI] [PubMed] [Google Scholar]

[bibr46-10732748251401263] 46.Kirchhoff AC, Montenegro RE, Warner EL, et al. Childhood cancer survivors' primary care and follow-up experiences. Support Care Cancer. 2014;22(6):1629-1635. doi: 10.1007/s00520-014-2130-6 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr47-10732748251401263] 47.Knighting K, Kirton JA, Thorp N, Hayden J, Appleton L, Bray L. A study of childhood cancer survivors' engagement with long-term follow-up care: ‘to attend or not to attend, that is the question. Eur J Oncol Nurs. 2020;45:101728. doi: 10.1016/j.ejon.2020.101728 [DOI] [PubMed] [Google Scholar]

[bibr48-10732748251401263] 48.Krauss V, Mertens A, Marchak JG, et al. Clinic reported facilitators and barriers to pediatric cancer survivor care delivery among survivorship clinics: a fishbone analysis. Pediatr Blood Cancer. 2023;70(8):e30480. doi: 10.1002/pbc.30480 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr49-10732748251401263] 49.Luckett T, DiGiacomo M, Heneka N, et al. A qualitative study of specialist multidisciplinary clinician perspectives on barriers/facilitators to care for children with brain cancer and their families: “We’re a little bit different to our adult counterparts”. Palliat Support Care. 2024;22(6):2096-2101. doi: 10.1017/s1478951524001421 [DOI] [PubMed] [Google Scholar]

[bibr50-10732748251401263] 50.Maeda N, Horibe K, Kato K, Kojima S, Tsurusawa M. Survey of childhood cancer survivors who stopped follow-up physician visits. Pediatr Int. 2010;52(5):806-812. doi: 10.1111/j.1442-200X.2010.03158.x [DOI] [PubMed] [Google Scholar]

[bibr51-10732748251401263] 51.Michel G, Kuehni CE, Rebholz CE, et al. Can health beliefs help in explaining attendance to follow-up care? The Swiss childhood cancer survivor study. Psychooncology. 2011;20(10):1034. doi: 10.1002/pon.1823 [DOI] [PubMed] [Google Scholar]

[bibr52-10732748251401263] 52.Milam JE, Meeske K, Slaughter RI, et al. Cancer-related follow-up care among Hispanic and Non-Hispanic childhood cancer survivors: the project forward study. Cancer. 2015;121(4):605-613. doi: 10.1002/cncr.29105 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr53-10732748251401263] 53.Miller BM, Yockel MR, Appel BE, et al. Multilevel facilitators and barriers to healthcare organization and delivery among childhood cancer survivors. Pediatr Blood Cancer. 2025;72(2):e31435. doi: 10.1002/pbc.31435 [DOI] [PubMed] [Google Scholar]

[bibr54-10732748251401263] 54.Mouw MS, Wertman EA, Barrington C, Earp JA. Care transitions in childhood cancer survivorship: providers' perspectives. J Adolesc Young Adult Oncol. 2017;6(1):111-119. doi: 10.1089/jayao.2016.0035 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr55-10732748251401263] 55.Nicklin E, Pointon L, Glaser A, et al. Unmet support needs in teenage and young adult childhood brain tumour survivors and their caregivers: “it's all the aftermath, and then you're forgotten about”. Support Care Cancer. 2021;29(11):6315-6324. doi: 10.1007/s00520-021-06193-x [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr56-10732748251401263] 56.Oeffinger KC, Mertens AC, Hudson MM, et al. Health care of young adult survivors of childhood cancer: a report from the childhood cancer survivor study. Ann Fam Med. 2004;2(1):61-70. [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr57-10732748251401263] 57.Paul V, Inhestern L, Sigmund D, et al. Addressing gaps and enhancing experiences in support services for families of pediatric cancer survivors. Pediatr Res. 2025;98(1):168-173. doi: 10.1038/s41390-024-03320-2 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr58-10732748251401263] 58.Pettit T, Proffit E, Reid J, et al. “I don't have to be sick to still be worthy”: the barriers experienced by adolescent and young adult cancer survivors in New Zealand. J Adolesc Young Adult Oncol. 2023;12(3):366-375. doi: 10.1089/jayao.2022.0051 [DOI] [PubMed] [Google Scholar]

[bibr59-10732748251401263] 59.Quillen J, Bradley H, Calamaro C. Identifying barriers among childhood cancer survivors transitioning to adult health care. J Pediatr Oncol Nurs. 2017;34(1):20-27. doi: 10.1177/1043454216631953 [DOI] [PubMed] [Google Scholar]

[bibr60-10732748251401263] 60.Racine S, Sanchez O, Lemonde M, Taccone MS, Schulte F. Unveiling perspectives on the psychosocial impacts of childhood cancer survival on young adult survivors' reassimilation journey: a qualitative exploration. Can Oncol Nurs J. 2024;34(2):179-195. doi: 10.5737/23688076342179 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr61-10732748251401263] 61.Ross WL, Mitchell HR, Iyer NS, Santacroce SJ, Kadan-Lottick NS. Impact of survivorship care on young adult survivors of childhood cancer with post-traumatic stress symptoms. Oncol Nurs Forum. 2019;46(1):33-43. doi: 10.1188/19.Onf.33-43 [DOI] [PubMed] [Google Scholar]

[bibr62-10732748251401263] 62.Ryan D, Chafe R, Moorehead P. Transition from pediatric to adult aftercare for survivors of pediatric cancer in newfoundland and labrador: a qualitative study. CMAJ Open. 2021;9(2):E309-E316. doi: 10.9778/cmajo.20200134 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr63-10732748251401263] 63.Sadak KT, Dinofia A, Reaman G. Patient-perceived facilitators in the transition of care for young adult survivors of childhood cancer. Pediatr Blood Cancer. 2013;60(8):1365-1368. doi: 10.1002/pbc.24494 [DOI] [PubMed] [Google Scholar]

[bibr64-10732748251401263] 64.Sadak KT, Neglia JP, Freyer DR, Harwood E. Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative study of survivorship providers. Pediatr Blood Cancer. 2017;64(11):e26587. doi: 10.1002/pbc.26587 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr65-10732748251401263] 65.Sadak KT, Gemeda MT, Grafelman M, et al. Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative interview study of survivors. BMC Cancer. 2020;20(1):898. doi: 10.1186/s12885-020-07360-9 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr66-10732748251401263] 66.Signorelli C, Høeg BL, Asuzu C, et al. International survey of psychosocial care for cancer survivors in Low-/Middle- and high-income countries: current practices, barriers, and facilitators to care. JCO Glob Oncol. 2024;10:e2300418. doi: 10.1200/go.23.00418 [DOI] [PubMed] [Google Scholar]

[bibr67-10732748251401263] 67.Sima JL, Perkins SM, Haggstrom DA. Primary care physician perceptions of adult survivors of childhood cancer. J Pediatr Hematol Oncol. 2014;36:118-124. doi: 10.1097/mph.0000000000000061 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr68-10732748251401263] 68.Szalda D, Pierce L, Hobbie W, et al. Engagement and experience with cancer-related follow-up care among young adult survivors of childhood cancer after transfer to adult care. J Cancer Surviv. 2016;10(2):342-350. doi: 10.1007/s11764-015-0480-9 [DOI] [PubMed] [Google Scholar]

[bibr69-10732748251401263] 69.Toenne R, Baumeister R, Koch A, Lindhorst K, Reinhardt D, Kremeike K. Network oncolgy specialist advisory service - A survey of the psychosocial situation of long term cancer survivors during childhood or adolescents. Klin Padiatr. 2022;234(3):138-145. doi: 10.1055/a-1662-5336. Netzwerk für Onkologische Fachberatung – Fragebogenstudie zur Psychosozialen Situation von Survivorn einer Krebserkrankung im Kindes- oder Jugendalter. [DOI] [PubMed] [Google Scholar]

[bibr70-10732748251401263] 70.van Laar M, Glaser A, Phillips RS, Feltbower RG, Stark DP. The impact of a managed transition of care upon psychosocial characteristics and patient satisfaction in a cohort of adult survivors of childhood cancer. Psychooncology. 2013;22(9):2039-2045. doi: 10.1002/pon.3248 [DOI] [PubMed] [Google Scholar]

[bibr71-10732748251401263] 71.Vetsch J, Fardell JE, Wakefield CE, et al. “Forewarned and forearmed”: long-term childhood cancer survivors' and parents' information needs and implications for survivorship models of care. Patient Educ Couns. 2017;100(2):355-363. doi: 10.1016/j.pec.2016.09.013 [DOI] [PubMed] [Google Scholar]

[bibr72-10732748251401263] 72.Viola AS, Levonyan-Radloff K, Masterson M, Manne SL, Hudson SV, Devine KA. Development of a self-management and peer-mentoring intervention to improve transition readiness among young adult survivors of pediatric cancer: formative qualitative research study. JMIR Form Res. 2022;6(8):e36323. doi: 10.2196/36323 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr73-10732748251401263] 73.Warner EL, Montenegro RE, Stroup A, Kinney AY, Kirchhoff AC. Health care concerns of rural childhood cancer survivors. J Health Care Poor Underserved. 2014;25(2):901-912. doi: 10.1353/hpu.2014.0095 [DOI] [PubMed] [Google Scholar]

[bibr74-10732748251401263] 74.Ekaterina A, Thorsten L, Gabriele C, Juliane G, Swart E, Baust K. Stepping into adulthood: pediatric cancer survivors and their parents' perspectives on the transition from pediatric to adult care. BMC Health Serv Res. 2025;25(1):204. doi: 10.1186/s12913-025-12326-3 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr75-10732748251401263] 75.Aleshchenko E, Langer T, Calaminus G, Gebauer J, Swart E, Baust K. Organizing long-term follow-up care for pediatric cancer survivors: a socio-ecological approach. Front Public Health. 2025;13:1524310. doi: 10.3389/fpubh.2025.1524310 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr76-10732748251401263] 76.Effinger KE, Haardörfer R, Marchak JG, et al. Current pediatric cancer survivorship practices: a report from the Children's Oncology Group. J Cancer Surviv. 2023;17(4):1139-1148. doi: 10.1007/s11764-021-01157-w [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr77-10732748251401263] 77.Rosenberg-Yunger ZR, Klassen AF, Amin L, et al. Barriers and facilitators of transition from pediatric to adult long-term Follow-Up care in childhood cancer survivors. J Adolesc Young Adult Oncol. 2013;2(3):104-111. doi: 10.1089/jayao.2013.0003 [DOI] [PubMed] [Google Scholar]

[bibr78-10732748251401263] 78.Michel G, Gianinazzi ME, Eiser C, et al. Preferences for long-term follow-up care in childhood cancer survivors. Eur J Cancer Care. 2016;25(6):1024-1033. doi: 10.1111/ecc.12560 [DOI] [PubMed] [Google Scholar]

[bibr79-10732748251401263] 79.Michel G, Gianinazzi ME, Vetsch J, et al. Physicians' experience with follow-up care of childhood cancer survivors - challenges and needs. Swiss Med Wkly. 2017;147:w14457. doi: 10.4414/smw.2017.14457 [DOI] [PubMed] [Google Scholar]

[bibr80-10732748251401263] 80.Hendriks MJ, Harju E, Roser K, Ienca M, Michel G. The long shadow of childhood cancer: a qualitative study on insurance hardship among survivors of childhood cancer. BMC Health Serv Res. 2021;21(1):503. doi: 10.1186/s12913-021-06543-9 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr81-10732748251401263] 81.Vetsch J, Rueegg CS, Mader L, et al. Follow-up care of young childhood cancer survivors: attendance and parental involvement. Support Care Cancer. 2016;24(7):3127-3138. doi: 10.1007/s00520-016-3121-6 [DOI] [PubMed] [Google Scholar]

[bibr82-10732748251401263] 82.Baenziger J, Roser K, Mader L, et al. Can the theory of planned behavior help explain attendance to follow‐up care of childhood cancer survivors? Psychooncology. 2018;27(6):1501-1508. doi: 10.1002/pon.4680 [DOI] [PubMed] [Google Scholar]

[bibr83-10732748251401263] 83.Hendriks MJ, Harju E, Michel G. The unmet needs of childhood cancer survivors in long-term follow-up care: a qualitative study. Psychooncology. 2021;30(4):485-492. doi: 10.1002/pon.5593 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr84-10732748251401263] 84.Wojcik KY, Miller KA, Wysong A, et al. Barriers to physician-based skin examinations for adolescent and young adult survivors of melanoma in the project forward study. JAMA Dermatol. 2021;157(7):874-876. doi: 10.1001/jamadermatol.2021.1850 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr85-10732748251401263] 85.Milam J, Freyer DR, Miller KA, et al. Project forward: a population-based cohort among young adult survivors of childhood cancers. JNCI Cancer Spectr. 2021;5(5):pkab068. doi: 10.1093/jncics/pkab068 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr86-10732748251401263] 86.Park ER, Kirchhoff AC, Zallen JP, et al. Childhood cancer survivor study participants' perceptions and knowledge of health insurance coverage: implications for the affordable care act. J Cancer Surviv. 2012;6(3):251-259. doi: 10.1007/s11764-012-0225-y [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr87-10732748251401263] 87.Park ER, Kirchhoff AC, Nipp RD, et al. Assessing health insurance coverage characteristics and impact on health care cost, worry, and access: a report from the childhood cancer survivor study. JAMA Intern Med. 2017;177(12):1855-1858. doi: 10.1001/jamainternmed.2017.5047 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr88-10732748251401263] 88.Nathan PC, Ness KK, Mahoney MC, et al. Screening and surveillance for second malignant neoplasms in adult survivors of childhood cancer: a report from the childhood cancer survivor study. Ann Intern Med. 2010;153(7):442-451. doi: 10.7326/0003-4819-153-7-201010050-00007 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr89-10732748251401263] 89.Geller AC, Keske RR, Haneuse S, et al. Skin cancer early detection practices among adult survivors of childhood cancer treated with radiation. J Invest Dermatol. 2019;139(9):1898-1905. doi: 10.1016/j.jid.2019.02.033 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr90-10732748251401263] 90.Ford JS, Tonorezos ES, Mertens AC, et al. Barriers and facilitators of risk-based health care for adult survivors of childhood cancer: a report from the childhood cancer survivor study. Cancer. 2020;126(3):619-627. doi: 10.1002/cncr.32568 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr91-10732748251401263] 91.Smith SM, Ford JS, Rakowski W, et al. Inconsistent mammography perceptions and practices among women at risk of breast cancer following a pediatric malignancy: a report from the childhood cancer survivor study. Cancer Causes Control. 2010;21(10):1585-1595. doi: 10.1007/s10552-010-9587-5 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr92-10732748251401263] 92.Kirchhoff AC, Kuhlthau K, Pajolek H, et al. Employer-sponsored health insurance coverage limitations: results from the childhood cancer survivor study. Support Care Cancer. 2013;21(2):377-383. doi: 10.1007/s00520-012-1523-7 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr93-10732748251401263] 93.Kang L, Kadan-Lottick NS, Rotatori J, et al. Patterns of physical therapy referral and subsequent attendance among childhood cancer survivors with chemotherapy-induced peripheral neuropathy at a regional childhood cancer survivorship Clinic. Semin Oncol Nurs. 2024;40(5):151716. doi: 10.1016/j.soncn.2024.151716 [DOI] [PubMed] [Google Scholar]

[bibr94-10732748251401263] 94.Szalda D, Piece L, Brumley L, et al. Associates of engagement in adult-oriented Follow-Up care for childhood cancer survivors. J Adolesc Health. 2017;60(2):147-153. doi: 10.1016/j.jadohealth.2016.08.018 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr95-10732748251401263] 95.Signorelli C, Wakefield CE, Fardell JE, et al. The role of primary care physicians in childhood cancer survivorship care: multiperspective interviews. Oncologist. 2019;24(5):710-719. doi: 10.1634/theoncologist.2018-0103 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr96-10732748251401263] 96.Nandakumar BS, Fardell JE, Wakefield CE, et al. Attitudes and experiences of childhood cancer survivors transitioning from pediatric care to adult care. Support Care Cancer. 2018;26(8):2743-2750. doi: 10.1007/s00520-018-4077-5 [DOI] [PubMed] [Google Scholar]

[bibr97-10732748251401263] 97.Signorelli C, Wakefield CE, McLoone JK, et al. Models of childhood cancer survivorship care in Australia and New Zealand: strengths and challenges. Asia Pac J Clin Oncol. 2017;13(6):407-415. doi: 10.1111/ajco.12700 [DOI] [PubMed] [Google Scholar]

[bibr98-10732748251401263] 98.Hill RE, Mercieca-Bebber R, Fardell JE, et al. Relationship between survivorship care plans and unmet information needs, quality of life, satisfaction with care, and propensity to engage with, and attend, follow-up care. Cancer. 2023;129(23):3820-3832. doi: 10.1002/cncr.34984 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr99-10732748251401263] 99.Signorelli C, Wakefield CE, McLoone JK, et al. Childhood cancer survivors' reported late effects, motivations for seeking survivorship care, and patterns of attendance. Oncologist. 2023;28(5):e276-e286. doi: 10.1093/oncolo/oyad004 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr100-10732748251401263] 100.Miller KD, Nogueira L, Devasia T, et al. Cancer treatment and survivorship statistics, 2022. CA Cancer J Clin. 2022;72(5):409-436. doi: 10.3322/caac.21731 [DOI] [PubMed] [Google Scholar]

[bibr101-10732748251401263] 101.Kagramanov D, Sutradhar R, Lau C, et al. Impact of the model of long-term follow-up care on adherence to guideline-recommended surveillance among survivors of adolescent and young adult cancers. Cancer Med. 2021;10(15):5078-5087. doi: 10.1002/cam4.4058 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr102-10732748251401263] 102.Agency for Healthcare Research and Quality . Updating the Framework and Measurement Criteria for AHRQ'S National Healthcare Quality and Disparities Report. Agency for Healthcare Research and Quality. https://effectivehealthcare.ahrq.gov/products/collections/ahrq-nhqdr. Accessed 23 May 2025. [Google Scholar]

[bibr103-10732748251401263] 103.Stal J, Piombo SE, Kysh L, et al. The integration of primary care and childhood cancer survivorship care: a scoping review. J Cancer Surviv. 2022;18:635-650. doi: 10.1007/s11764-022-01296-8 [DOI] [PubMed] [Google Scholar]

[bibr104-10732748251401263] 104.Michie S, van Stralen MM, West R. The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implement Sci. 2011;6(1):42. doi: 10.1186/1748-5908-6-42 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr105-10732748251401263] 105.Wu LM, Huang IC, Su HL, Lee SL. Interventions to support adolescents with cancer in decision-making: a systematic review and meta-analysis. Worldviews Evid Based Nurs. 2021;18(6):339-349. doi: 10.1111/wvn.12522 [DOI] [PubMed] [Google Scholar]

[bibr106-10732748251401263] 106.Bingen K, Karst J, Anderson L, et al. Evaluation of a transition to survivorship program for pediatric, adolescent, and young adult cancer patients and caregivers. Pediatr Blood Cancer. 2023;70(5):e30277. doi: 10.1002/pbc.30277 [DOI] [PubMed] [Google Scholar]

[bibr107-10732748251401263] 107.Mollica MA, McWhirter G, Tonorezos E, et al. Developing national cancer survivorship standards to inform quality of care in the United States using a consensus approach. J Cancer Surviv. 2024;18(4):1190-1199. doi: 10.1007/s11764-024-01602-6 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr108-10732748251401263] 108.de Beijer IAE, Bouwman E, Mulder RL, et al. Barriers, facilitators, and other factors associated with health behaviors in childhood, adolescent, and young adult cancer survivors: a systematic review. Cancer Med. 2024;13(12):e7361. doi: 10.1002/cam4.7361 [DOI] [PMC free article] [PubMed] [Google Scholar]

[bibr109-10732748251401263] 109.Otth M, Denzler S, Koenig C, Koehler H, Scheinemann K. Transition from pediatric to adult follow-up care in childhood cancer survivors-a systematic review. J Cancer Surviv. 2021;15(1):151-162. doi: 10.1007/s11764-020-00920-9 [DOI] [PubMed] [Google Scholar]

PERMALINK

Survivorship Care After Childhood Cancer: A Systematic Review of Reported Barriers and Facilitators

Erin M Mobley, PhD, MPH

Xu Ji, PhD, MSPH

Joel Milam, PhD

Kimberly Miller, PhD, MPH

David R Freyer, MD, MS

Carla L Fisher, PhD, MSW

Raymond B Mailhot Vega, MD, MPH

Julia Stal, PhD

Carol Y Ochoa-Dominguez, PhD, MPH

Maria Bolshakova, PhD

Naghmeh Aminzadeh, DMD, MPH

Jennifer Dinalo, PhD

Aneesa Motala, MSW

Susanne Hempel, PhD

Abstract

Introduction

Methods

Results

Conclusions

Plain Language Summary

Introduction

Methods

Sources and Searches

Screening and Abstraction

Critical Appraisal and Synthesis

Results

Figure 1.

Figure 2.

Figure 3.

Table 1.

Knowledge, Autonomy, and Cultural Factors

Prioritization, Active Avoidance, Trust, and Communication

Health Care System Infrastructure and Transition

Discussion

Table 2.

Conclusion

Supplemental Material

Appendix.

Abbreviations

ORCID iDs

Ethical Considerations

Data Availability Statement

References

Associated Data

Supplementary Materials

Data Availability Statement

ACTIONS

PERMALINK

RESOURCES

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