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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.

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.

Keywords

cancer survivors health services accessibility health equity care engagement barriers facilitators

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.

Figure 1.

Literature Flow Diagram

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.

Figure 2.

Reported Facilitators (A) and Barriers (B) to Survivorship Care by Who It Is Pertinent to Among Studies With High and Moderate Quality of Evidence

Figure 3.

Risk of Bias

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]

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

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

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.

Footnotes

ORCID iDs

Erin M. Mobley

Joel Milam

Julia Stal

Susanne Hempel

Ethical Considerations

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

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.

Declaration of Conflicting Interests

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

Data Availability Statement

The data are available in the Appendix.

Supplemental Material

Supplemental material for this article is available online.

Appendix

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