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

Figures & data

Figure 1 Levesque framework.

Notes: Reproduced from Levesque JF, Harris MF, Russell G. Patient-centred access to health care: conceptualising access at the interface of health systems and populations. International Journal for Equity in Health. 2013;12(1):18. Creative Commons.³²

Figure 2 PRISMA flow diagram of studies identified for inclusion.

Table 1 Key Findings Summarized According to Levesque’s Five Dimensions of Accessing Healthcare³²

Author, (Year) Country	Participant Type, Number of Participants	Outcome Measure	Care Type	Dimension 1: Approachability/Ability to Perceive	Dimension 2: Acceptability/Ability to Seek	Dimension 3: Availability and Accommodation/Ability to Reach	Dimension 4: Affordability/Ability to Pay	Dimension 5: Appropriateness/Ability to Engage
Berg et al^Citation24 (2016) USA	106 survivors, diagnosed <18, 18–34 at survey	Survivor reported barriers, correlation of insurance with attendance	Survivorship clinics and annual health provider visit		Negative emotional reaction around doctors (7.6%)	Attending college so time is an issue (34.3%) Relocated (12.4%) Parents not around to prompt (4.8%)	Insufficient insurance coverage (10.5%) Lack of insurance positively associated with non-attendance (OR = 0.04, CI 0.01, 0.03, p = 0.02)
Bowers et al^Citation37 (2009) USA	145 COG institutions	Institution reported barriers	Overall follow-up				Lack of funding or dedicated time for survivors (22.9%)	Inability to locate adult survivors (3.8%)
Christen et al^Citation38 (2016) Switzerland	160 AYA survivors, diagnosed 16–25	AYA survivor reported facilitators [measured by Likert scale of importance, 0–3, where 0 is not important and 3 is very important]	Overall follow-up	Be taken seriously (2–3)			Paid by insurance (2–3)	Competent staff (2–3) Same doctor (2–3) Same nurse (1–2) Regular appointments (2–3) Relationship quality (2–3)
Cousineau et al^Citation39 (2019) USA	235 survivors, diagnosed 5–15	Correlation between insurance coverage and attendance	Overall follow-up				Uninsured survivors were more likely to have received no cancer care compared with those with coverage (60% vs 29%, P < 0.0001).
DiNofia et al^Citation40 (2017) USA	41 parents of survivors diagnosed <21 years	Parent reported facilitators [Percentages represent the proportion of parents who perceive facilitators as (very important, important or very important)]	Transition to adult based care	Perceiving provider to be knowledgeable in childhood cancer (85%, 97%)	Networking opportunities (28%, 77%) Survivor “readiness” (35%, 70%) Parent “readiness” (29%, 63%)	• Flexible scheduling (58%, 95%)	Insurance acceptability (85%, 100%) Opportunity to get insurance counselling (73%, 97%)	Offer comprehensive care (80%, 100%) Address both health and lifestyle issues (73%, 98%) Access to other subspecialists (75%, 100%) A known pediatric provider as part of the team (75%, 95%) Access to necessary follow-up tests (73%, 100%) Access to mental health providers (62%, 90%) Access to vocational training (35%, 70%) A single identified contact person for transition (62%, 95%) Gradual transition (35%, 78%) Promote independence/personal responsibility (78%, 100%) Includes parents (83%, 100%)
Effinger et al^Citation41 (2022) USA	153 COG institutions	Institution reported barriers	Overall follow-up		Lack of perceived need or support for late effects services by other oncologists (13.1%)		Not enough funding for support of program (40.9%)	Lack of dedicated time for late effects program development (57.7%)
Ernst et al^Citation42 (2022) Germany	633 childhood cancer survivors, diagnosed <15 years	Survivor reported barriers	Overall follow-up	Lack of information about medical follow-up and/or its purpose (66.2%)	Emotional/motivational reasons (6.3%)	Structural barriers (7.8%)		Medical follow-up was terminated by healthcare provider (19.7%)
Eshelman-Kent et al^Citation43 (2011) USA	179 COG institutions	Institution reported barriers	Transition to adult based care		Lack of perceived need or support for late effects services by other oncologists (7%) Lack of oncology provider desire to “let go” of survivors (4.2%) Perceived lack of interest from adult-oriented providers in caring for survivors (1.6%)		Not enough funding for support of program (20%)	Lack of dedicated time for late effects program development (29%) Perceived lack of knowledge about late effects on the part of the clinician being referred to (28.5%)
Ford et al^Citation44 (2020) USA	975 survivors, diagnosed <21	Correlation of survivor reported factors with attendance	Overall follow-up	Belief that cancer-related problem is likely (RR = 1.5, 95% CI1.4–1.6) Confidence in doctors (RR = 1.2, 95% CI 1.1–1.3) Difficulty finding a doctor (RR = 0.9, 95% CI 0.8–1)	Interest in routine medical visit (RR = 1.3, 95% CI 1.2–1.4) Perceived importance of cancer-related visit (RR = 1.4, 95% CI 1.3–1.6) Health concerns and worries (RR = 1.6, 95% CI 1.4–1.8) Painful memory of cancer treatment (RR = 1.2, CI = 1.1–1.3)	Transportation problems (RR = 1.4, 1.0–1.8)	Health insurance problems (RR = 1.4, 95% CI 0.9–1.1)
Kenney et al^Citation45 (2016) USA	347 pediatric oncologists	Oncologist reported barriers	Overall follow-up	Provider attachment to family/patient (85.2%)		Lack of adult providers with cancer survivor expertise (86%)
Klosky et al^Citation46 (2008) USA	941 survivors diagnosed <16 years	Survivor reported non-attendance reasons, correlation between insurance coverage and attendance	Clinic attendance			Work/school conflicts (19.3%) Personal/family health problem (12.2%) Poor clinic contact/rescheduling (6.4%) Transportation problems (1.4%)	Survivors who were not insured were more likely to be non-attenders than those privately insured (p < 0.001, odds ratio 2.36)
Lupatsch et al^Citation47 (2015) Switzerland	410 survivors, diagnosed <16, 16–21 at survey	Correlation of health beliefs and attendance	Overall follow-up	Belief that survivorship care is unnecessary associated with less likely attendance (OR = 0.70, 95% CI: 0.50–1.00) Belief that follow-up care is suitable is associated with greater attendance (OR = 1.56, 95% CI: 1.07–2.27)
Maeda et al^Citation48 (2010) Japan	114 survivors, diagnosed <16	Survivor reported reasons for non-attendance	Any medical follow-up	Belief that “I am in good health” (26/56) The physician in charge said I did not need to visit anymore (33/56)		Moved away (1/56)	Cessation of public financial support (2/56)	Changes in the physician in charge (2/56)
Mertens et al^Citation49 (2004) USA	17 healthcare policy experts	Healthcare policy expert reported barriers [Measures of importance, 1–7, where 7 is critically important]	Transition to adult based care			Lack of healthcare personnel interested in providing follow-up care Lack of healthcare personnel trained in providing follow-up care (5.29) Few organized programs providing follow-up for survivors (5.85)	• Lack of insurance due to pre-existing condition (5.77) • Insurance does not adequately cover preventative healthcare (5.69) • Expense of screening tests (5.15)	PCPs are unfamiliar with late effects of childhood cancer and their management Disjuncture between pediatric and adult care (6.29) Plan for follow-up not provided by oncologist (5.71) Lack of communication between PCPs and cancer specialists (5.64) Medical records may be difficult to track down (5.50) Lack of uniform guidelines for follow-up (5.46)
Milam et al^Citation50 (2021) USA	1106 survivors, diagnosed <19	Correlation of facilitators with attendance	Overall follow-up	Knowledge of the need for follow-up care (OR = 3.57, 95% CI 2.90–4.39)	Healthcare self-efficacy (OR = 1.23, 95% CI 1.09–1.39)		Health insurance (OR = 2.06, 95% CI 1.28–3.32)
Michel et al^Citation51 (2011) Switzerland	1075 survivors, diagnosed <16	Correlation between health beliefs and attendance	Overall follow-up	Belief that regular follow-up is unnecessary is associated with non-attendance (OR = 0.47, 95% CI 0.36–0.61, p < 0.001)
Michel et al^Citation52 (2016) Switzerland	314 survivors, diagnosed <16	Survivor reported facilitators [Likert scale]	Overall follow-up	Be taken seriously (2.70)			Insurance reimbursement (2.5)	Competent staff (2.74) Relationship quality (2.5) Doctor continuity (2–2.5) Nurse Continuity (1–2)
Miller et al^Citation53 (2016) USA	193 survivors, diagnosed 5–18	Correlation of healthcare self-efficacy with attendance	Overall follow-up		Healthcare self-efficacy
Mobley et al^Citation54 (2021) USA	1106 survivors, diagnosed <20	Correlation between insurance change and attendance	Overall follow-up				Any insurance coverage change associated with decreased probability of recent cancer related follow-up care (−5 ppt, SE 0.02 for those who gained coverage; −15 ppt, SE 0.04 for those who lost coverage)
Sadak et al^Citation55 (2019) USA	97 medical institutions	Institution reported barriers	Overall follow-up	Provider not willing to “let go” of survivor (11%)		• Lack of available adult providers to partner with (55%)		Available adult providers lack knowledge in childhood cancer survivorship (58%) Adult models of care cannot accommodate influx of new patients (11%)
Sadak et al^Citation56 (2013) USA	103 survivors, diagnosed <16	Survivor reported facilitators [Percentages represent the proportion of survivors who perceive facilitators as (very important, important or very important)]	Transition to adult based care	Perceiving provider to be knowledgeable in childhood cancer (66%, 80%)	Networking opportunities (13%, 58%) Feeling of “readiness” (16%, 60%)	Flexible scheduling (58%, 99%)	Insurance acceptability (78%, 97%) Opportunity to get insurance counselling (53%, 89%)	Offer comprehensive care (58%, 98%) Address both health and lifestyle issues (43%, 88%) Access to other subspecialists (51%, 96%) Access to PCP (34%, 76%) Access to mental health providers (24%, 67%) Access to vocational training (18%, 54%) A single identified contact person for transition (54%, 94%) Gradual transition (13%, 60%) Promote independence/personal responsibility (42%, 97%) Include parents (43%, 80%) Include significant others (34%, 77%)
Signorelli et al^Citation57 (2019) Australia	57 survivors diagnosed <16 years, 63 parents, 51 primary care providers	Survivor, parent and PCP reported barriers	PCP-led follow-up	Low confidence in PCP ability to deliver survivorship care (48%) Low perceived PCP knowledge about cancer history and long-term survivorship needs (38%) Perceiving PCPs as too busy (18%)	Aversion to doctors after treatment (7%)		Out-of-pocket expenses (5%)	Unmet information needs about their patients’ risk of developing late effects (94%), recommended surveillance schedule (77%) and general CCS information (76%)
Signorelli et al^Citation58 (2020) Australia	27 survivors, diagnosed <16	Survivor reported barriers	Overall follow-up	Low perceived need to attend (30%) Unaware of clinic (10%)	Prefer not to return to treating hospital (7%) Prefer not to be seen in children’s Hospital (4%)	Distance to clinic (30%)		Lack of reminders to return (7%)
Signorelli et al^Citation59 (2017) Australia	19 pediatric medical directors and clinical nurse directors from all ANZ pediatric oncology units	Provider/Institution reported barriers	Overall follow-up		Lack of recognition of survivor needs in the adult sector (16%) Oncologist engagement and recognition (11%)	Staff shortages (37%) No dedicated patient PCPs (26%)	Limited space and resources (21%) Lack of funding (37%) Instability or loss of funding (42%)	Inadequacy of pediatric setting (42%) Lack of patient and referral feedback (32%) Lack of wider cooperation and support (16%) Lack of referral pathways (26%) Undefined transition process (84%)
Signorelli et al^Citation23 (2019) Australia	633 survivors, diagnosed <16, parents represented younger survivors (<16)	Survivor reported barriers	Overall follow-up	Unaware of follow-up clinic Do not like/trust health professionals Prefer PCP Low perceived control of cancer/late effects No perceived need for follow-up care	Returning to hospital brings up memories Would rather just get on with life	Unable to travel without assistance Clinic too far away Unable/reluctant to use leave Cannot miss work Difficult to find childcare Appointments are inconvenient	Cannot afford loss of wages Costs too much to attend	Did not have any reminders
Quillen et al^Citation60 (2016) USA	48 survivors, diagnosed <21	Survivor reported barriers	Transition to adult based care	Positive association between seeing an adult primary care provider on a yearly basis and believing in the importance of a yearly checkup (r = 0.35; P = 0.018)	Not “ready” for adult healthcare (10%)	Transportation (2/48) Location (1/48) Scheduling conflicts (1/48)	Medical costs (4/48)
Zebrack et al^Citation61 (2004) USA	19 CAYA survivors diagnosed under 30 years, 1 parent of deceased cancer patient	Survivor reported barriers [Measures of importance, 1–7, where 7 is critically important]	Overall follow-up	Survivors lack knowledge about late effects and risks (5.47) Survivors do not know details of their disease and treatments (5.47) Lack of information about appropriate follow-up programs (6.06)	Anxiety or fear of being diagnosed with cancer again (6.47) Survivor desire to “move on” (5.94) Anxiety or fear of being diagnosed with a late effect (5.94) Lack of medical community’s interest in providing survivorship care (5.25)	Limited number of adult providers equipped to deal with survivors (6.29) Lack of follow-up programs (6.18)	Lack of personal finances (5.35) Concerns about losing insurance if late effects are diagnosed (5.12) Lack of insurance (6.59)	Lack of training/education of PCPs about health problems of survivors (6.47) Lack of training/education of specialists about health problems of survivors (6.47) Physicians fail to differentiate if health issues are related to previous cancer (5.81) Lack of communication among specialists (5.71) Lack of support for transition (5.35) Lack of consensus about what tests and when they need to be done (5.18) Difficulty locating medical records (5.35)

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