Socioeconomic Factors and Adherence to Health Care Recommendations in Adolescent and Young Adult Cancer Survivors

Abstract

Purpose:

The majority of adolescent and young adult (AYA) cancer survivors do not receive recommended health care surveillance after therapy. We used cross-sectional survey data to evaluate the impact of income, education, marital status, and insurance on health care adherence among AYA survivors.

Methods:

Eligible survivors were 18–39 years at diagnosis with invasive malignancy, 1–5 years from therapy completion. Online surveys assessed sociodemographic factors and self-report of completion of recommended health care services. Diagnosis and treatment data were abstracted from medical records. Multivariable logistic regression calculated odds ratios (ORs) and 95% confidence intervals (CIs) for adherence in relation to socioeconomic status and support.

Results:

Of 344 participants, 36% were adherent to at least 80% of recommendations. Adherence varied by cancer type: 34% for breast cancer, 52% for leukemia/lymphoma, 23% for other tumors. Adherence rates were similar among White, Asian, and Hispanic/Latinx patients. Lower adherence was associated with lower education (OR: 0.43; 95% CI: 0.23–0.80 for <4-year college degree) and lower annual income (OR: 0.51; 95% CI: 0.28–0.95 for $41,000–$80,000; OR: 0.40; 95% CI: 0.19–0.86 for ≤$40,000). Adherence decreased with decreasing income levels among those who were 1 to less than 3 years after diagnosis (OR: 0.25; 95% CI: 0.07–0.93 for $81,000–$120,000; OR: 0.24; 95% CI: 0.07–0.84 for $41,000–$80,000; OR: 0.13; 95% CI: 0.03–0.60 for ≤$40,000).

Conclusion:

Risk of nonadherence to health care guidelines was associated with lower income and lower education among AYA cancer survivors. Identification of these risks and related barriers to adherence in AYA survivors will inform interventions designed to meet needs of these high-risk groups, particularly during the first years after diagnosis. Trial Registration: NCT02192333.

Introduction

Nearly 90,000 new malignancies are diagnosed annually in adolescent and young adults (AYA) in the United States.¹ Historically, this population has not benefited from the same improved survival compared with younger pediatric or older adult cohorts. Research efforts to address this disparity have led to improved AYA survival and a growing population of AYA cancer survivors.² Unfortunately, AYA survivors also have greater rates of heart disease, diabetes, asthma, and high blood pressure compared with peers,³ and ensuring their continued participation in recommended health care surveillance is important to reduce subsequent cancer treatment- and disease-related morbidity and mortality. Risk-based health care, with tailored recommendations for screening and surveillance based on cancer treatment and history, is recommended for all survivors⁴; adherence to tailored recommendations is a critical component in risk-based health care.

However, the majority of AYA survivors do not receive recommended health care surveillance after completing therapy.^5,6 Among nearly 1000 AYA survivors, ∼40% reported no routine medical visits in the prior year.⁶ Inadequate survivorship care also occurs in adult survivors of childhood cancer. In one survey of >8500 patients, only 28% of survivors with increased cardiomyopathy risk had recommended echocardiograms, and 41% with increased breast cancer risk received recommended mammograms within a 2-year period.⁵

Low socioeconomic status (SES) and lack of social support are associated with decreased survival and quality of life in AYA cancer survivors, possibly due in part to poor adherence to recommended health care guidelines.^7–11 Factors such as income, education, insurance status, and marital status are of particular interest in AYAs given the challenges surrounding re-entry into school and the workforce after treatment, as well as the challenges of financial independence during transitional years into adulthood. Furthermore, young adults 19–34 years of age comprise the greatest percentage (14%) of uninsured Americans by age group.¹² Cancer-related financial concerns may affect health care utilization in AYA survivors, including screening for cancer and other conditions like hypertension, as well as basic preventive care such as dental and vision exams.

Although prior research has described the importance of SES and social support, the impact of specific factors such as income, education, insurance, marital status, race, and ethnicity on adherence to health care recommendations among AYA cancer survivors has not been well described. To evaluate this, we used patient-reported outcomes (PRO) and treatment data from four national comprehensive cancer centers participating in the Survivorship Centers of Excellence Network (SCOEN).¹³ Our primary objective was to measure the relationship of self-reported indicators of SES and social support on adherence to recommended health care surveillance among AYA cancer survivors. We also evaluated these relationships by cancer diagnosis categories, sex, and time since diagnosis to obtain a more nuanced understanding of which factors are associated with adherence.

Methods

Study setting and participants

For this analysis, we used cross-sectional baseline PRO data collected as part of an earlier SCOEN multicenter randomized controlled trial evaluating the effect of providing AYA cancer survivors a focused survivorship care intervention.¹⁴ The study was approved by the Institutional Review Boards at each participating institution: Fred Hutchinson Cancer Center, Abramson Cancer Center at the University of Pennsylvania, Dana Farber Cancer Institute, and the Jonsson Comprehensive Cancer Center at the University of California Los Angeles.

Participants were required to be 18–39 years at diagnosis with an invasive malignancy; have received treatment that included surgery, cytotoxic chemotherapy, biological or targeted agents, and/or radiation therapy; be 1–5 years from completion of active cancer-directed therapy and in active follow-up, defined as being seen for a routine follow-up visit in the participating center at least once in the 2 years before enrollment and/or scheduled to be seen for routine follow-up in the upcoming 6 months; and be able to read and speak English adequately to complete the PRO assessment. As the primary aim of the parent study was to evaluate a focused survivorship care intervention to improve survivorship outcomes, patients who previously visited a survivorship clinic or who had already received a treatment summary and a survivorship care plan (elements of the focused intervention in the parent study) were excluded.

Potentially eligible survivors were identified from SCOEN tumor registries as previously described.¹⁴ All eligible participants were contacted through mail and/or telephone by their respective care centers, with information describing the study and requesting they visit the study website to register, return a response form requesting follow-up information, or opt out of the study. Registered participants were directed to a secure online portal to complete an online consent before receiving a unique link to the baseline PRO. Participants received $50 gift cards for baseline survey completion.

Assessment of health care adherence

The health care adherence (HCA) PRO measure assessed adherence to recommended guidelines for AYA survivors, accounting for sex, age, and treatment/disease exposures in defining expected tests or exams. The HCA has been standardized in >1000 hematopoietic stem cell transplant and other cancer survivors.^15,16 Each item (e.g., blood pressure check, lipid tests, mammogram, skin exam, colonoscopy) queried when the test was last completed during the past 10 years; response options also included “never” and “do not know.” Responses were converted to dichotomous measures of 0 (nonadherent) or 1 (adherent) scores, with each cut point based on guideline standards for test frequency by age, sex, and treatment received. Responses of “don't know” or “never” were scored as nonadherent, since a goal of survivorship care is that patients understand what tests are needed for their own health maintenance.

National Comprehensive Cancer Network (NCCN) AYA guidelines were used to define survivor-specific surveillance adherence cut points as published at study onset.¹⁷ The NCCN Adult Survivorship Guidelines were used if AYA guidelines did not include a specific surveillance recommendation.^18–20 When guidelines were not specific for survivors, standard adult recommendations based on United States Preventive Services Taskforce or other relevant U.S. national guidelines were used to determine the age at which surveillance testing should be initiated and testing frequency. In the absence of specific NCCN or USPSTF guidelines, Children's Oncology Group guidelines were reviewed, and an adherence cut point was decided by consensus based on standard practice by the study survivorship clinician investigators. No major changes occurred in guidelines that impacted adherence scoring during the study period. When participants did not meet recommended age or treatment criteria, items were scored as adherent regardless of response.

Composite scores were transformed to the proportion of recommended tests completed within the recommended time frame (range 0.0–1.0). Based on standards determined in prior research, subjects were classified as adherent with a minimum composite score of 0.8 (met ≥80% of recommendations).²¹

Clinical data, demographics, and factors associated with SES

Study coordinators at each site abstracted diagnosis and treatment data from medical records into a secure central online database using a standardized protocol. Data included: diagnosis (breast cancer, leukemia/lymphoma, other solid tumors), sex, time since diagnosis (1 to <3 years, 3+ years), diagnosis age (continuous), and age at survey (continuous). The PRO survey queried highest education level, annual household income, marital status, and available medical insurance and type. Participants reported their race and ethnicity.

Statistical analysis

We described demographics, disease characteristics, SES factors, and support as indicated by marital status among those who were and were not adherent to survivorship plan guidelines. Adherence was assessed by levels of each SES and support indicator using multivariable logistic regression to estimate odds ratios (ORs) and Wald-based 95% confidence intervals (CIs). We adjusted a priori for cancer center and then used directed acyclic graphs to identify potential confounders. We evaluated diagnosis category, sex, and age at survey for possible confounding using the change in estimate approach²²; only age at survey completion altered results by >10%. All ORs presented are adjusted for cancer center and age at survey completion.²²

The likelihood ratio test for trend was used to evaluate possible linear trends in ordinal factors with three or more levels. Analyses were conducted for all subjects and by diagnosis category, time since diagnosis (1 to <3 years/3+ years), and sex to assess possible differences in adherence, as surveillance strategies vary by cancer type, and behaviors may vary by sex and time since diagnosis. Race and ethnicity were not evaluated in subanalyses due to small numbers. Analyses were performed in RStudio (Version 1.2.5019; RStudio, Inc., Boston, MA).²³

Results

In total, 344 AYA cancer survivors completed the survey (Fig. 1); 64% were nonadherent to health care guidelines (Table 1). Participants were most adherent to guidelines involving blood pressure screening, dental exams, and eye exams, and least adherent to bone density tests, thyroid bloodwork, and mammograms. Adherent and nonadherent participants had similar proportions of females (∼70%) and similar distributions of age at survey completion (range 20–45 years). Among participants 1 to less than 3 years from cancer diagnosis, 43% were adherent, compared with 33% of participants 3+ years from cancer diagnosis. A majority of participants self-identified as White (79%), 11% Asian, 4% Black, and <1% American Indian, Alaskan Native, Native Hawaiian, and Pacific Islander; 10% of participants identified as Hispanic or Latinx.

FIG. 1.

Eligibility, participation, and completion of baseline patient-reported outcomes survey.

Table 1.

Personal and Cancer-Related Characteristics of 344 Adolescent and Young Adult Cancer Survivors by Adherence to Survivorship Care Plan Guidelines

	Overall	Adherent to survivorship guidelines
Characteristic	(N = 344)	No (N = 219)		Yes (N = 125)
		n	%	n	%
Time from diagnosis (years)^a
1–<3	101	58	26.5	43	34.4
3+	236	157	71.7	79	63.2
Age at time of survey (years)
<25	22	19	8.7	3	2.4
25 to <30	40	19	8.7	21	16.8
30 to <35	68	39	17.8	29	23.2
35 to <40	110	74	33.8	36	28.8
40+	104	68	31.0	36	28.8
Sex
Female	242	153	69.9	89	71.2
Male	102	66	64.7	36	35.3
Cancer diagnosis
Bones and joints	9	7	3.2	2	1.6
Breast cancer	140	93	42.5	47	37.6
Digestive system	13	11	5.0	2	1.6
Genital system, female	19	13	5.9	6	4.8
Genital system, male	40	31	14.2	9	7.2
Leukemia/bone marrow	42	18	8.2	24	19.2
Lymphoma	66	34	15.5	32	25.6
Soft tissue	13	11	5.0	2	1.6
Other	2	1	0.5	1	0.8
Race^a
White	272	173	79.0	99	79.2
Asian	39	23	10.5	16	12.8
Black	15	12	5.5	3	2.4
Other^b	3	2	0.9	1	0.8
Ethnicity^a
Hispanic or Latinx	33	20	9.1	13	10.4
Not Hispanic or Latinx	308	197	90.0	111	88.8
Insurance
Private	268	167	76.3	101	80.8
Medicaid or medicare	47	30	13.7	17	13.6
None or self-pay	29	22	10.0	7	5.6
Education
Postgraduate degree	132	74	33.8	58	46.4
4-year college degree	124	80	36.5	44	35.2
2-year college degree, trade degree	41	29	13.2	12	9.6
Some vocational or college credit	26	20	9.1	6	4.8
High school degree or GED^c	20	16	7.3	4	3.2
Less than high school	1	0	0.0	1	0.8
Marital status
Married or partnered	239	149	68.0	90	72.0
Single, divorced, widowed, separated	105	70	32.0	35	28.0
Income ($)^a
≥121,000	123	69	31.5	54	43.2
101,000–120,000	30	19	8.7	11	8.8
81,000–100,000	39	24	11.0	15	12.0
61,000–80,000	43	27	12.3	16	12.8
41,000–60,000	40	30	13.7	10	8.0
21,000–40,000	33	24	11.0	9	7.2
≤20,000	29	20	9.1	9	7.2
Participating cancer center
Site 1	108	63	28.8	45	36.0
Site 2	123	82	37.4	41	32.8
Site 3	60	39	17.8	21	16.8
Site 4	53	35	16.0	18	14.4

Missing data among those adherent or nonadherent to at least 80% of recommendations, respectively: Time from diagnosis (2.4%, 1.8%), Race (4.8%, 4.1%), Ethnicity (0.8%, 0.9%), and Income (0.8%, 2.7%).

Other race includes American Indian, Alaskan Native, Native Hawaiian, Pacific Islander.

General Education Development.

Lower adherence was associated with education level of <4-year college degree (OR: 0.43; 95% CI: 0.23–0.80) relative to having a postgraduate degree (Table 2). We observed decreasing adherence with lower levels of education (trend test p = 0.01). Lower income levels of $41,000–$80,000 or ≤$40,000 were also associated with lower adherence (OR: 0.51; 95% CI: 0.28–0.95, and OR: 0.40; 95% CI: 0.19–0.86, respectively) relative to highest income level, with decreasing adherence observed with decreasing annual household income level (trend test p < 0.01). Although the OR for adherence among Black patients was 0.45 (95% CI: 0.12–1.65), our numbers were quite small and the difference was not statistically significant. Adherence levels did not significantly differ by time since diagnosis (OR: 0.66, 95% CI: 0.40–1.09).

Table 2.

Logistic Regression of Self-Reported Indicators of Socioeconomic and Support Status with Adherence to Recommended Health Care Guidelines Among 344 Adolescent and Young Adult Cancer Survivors

	Adherent to guidelines
	No (N = 219)		Yes (N = 125)		OR ^a	95% CI
	n	%	n	%
Insurance
Private	167	76.3	101	80.8	1.00	Referent
Medicaid/medicare	30	13.7	17	13.6	0.90	0.46–1.76
None or self-pay	22	10.0	7	5.6	0.54	0.22–1.34
Education^b
Postgraduate degree	74	33.8	58	46.4	1.00	Referent
4-year college degree	80	36.5	44	35.2	0.69	0.41–1.17
<4-year college degree	65	29.7	23	18.4	0.43	0.23–0.80
Marital status
Married or partnered	149	68.0	90	72.0	1.00	Referent
Not married or partnered	70	32.0	35	28.0	0.76	0.45–1.28
Income ($)^c
≥121k	69	31.5	54	43.2	1.00	Referent
80–120k	43	19.6	26	20.8	0.71	0.38–1.33
41–80k	57	26.0	26	20.8	0.51	0.28–0.95
≤40k	44	20.1	18	14.4	0.40	0.19–0.86
Race
White	173	79.0	99	79.2	1.00	Referent
Asian	23	10.5	16	12.8	1.18	0.58–2.40
Black	12	5.5	3	2.4	0.45	0.12–1.65
Ethnicity
Not Hispanic or Latinx	197	90.0	111	88.8	1.00	Referent
Hispanic or Latinx	20	9.1	13	10.4	1.08	0.50–2.34
Time from diagnosis (years)
1 to <3	58	26.5	43	34.4	1.00	Referent
3+	157	71.7	79	63.2	0.66	0.40–1.09

Bold font indicates p < 0.05.

Adjusted for cancer center and age at time of survey.

Education trend test p-value: 0.01.

Income trend test p-value: <0.01.

CI, confidence interval; OR, odds ratio.

Diagnosis category

Guideline adherence varied by cancer type, with 34% adherent among 140 participants with breast cancer, 52% among 108 with leukemia/lymphoma, and 23% among 95 with solid tumors (Supplementary Table S1). Adherence among breast cancer survivors was associated with education level (OR: 0.26; 95% CI: 0.08–0.88 for <4-year college degree) (Table 3). Breast cancer survivors with annual income $41,000–$80,000 were also less likely to be adherent (OR: 0.14; 95% CI: 0.03–0.72) relative to survivors with annual income ≥$121,000. Adherence was not associated with insurance type or marital status in this group. Among participants with leukemia/lymphoma or solid tumors, adherence was not associated with indicators of SES and support, although smaller numbers likely reduced our ability to examine these associations.

Table 3.

Logistic Regression of Indicators of Socioeconomic and Support Status with Adherence to Recommended Health Care Guidelines Among 344 Adolescent and Young Adult Cancer Survivors, by Diagnosis Category

	Diagnosis category
	Breast cancer (N = 140)		Leukemia/lymphoma (N = 108)		Solid tumors (N = 96)
	OR ^a	95% CI	OR ^a	95% CI	OR ^a	95% CI
Insurance
Private	1.00	Referent	1.00	Referent	1.00	Referent
Medicaid/medicare	0.28	0.05–1.52	1.16	0.41–3.28	0.80	0.14–4.73
None or self-pay	0.53	0.09–3.03	0.37	0.07–1.89	0.97	0.15–6.29
Education
Postgraduate degree	1.00	Referent	1.00	Referent	1.00	Referent
4-year college degree	0.73	0.31–1.73	0.68	0.24–1.93	0.61	0.19–1.90
<4-year college degree	0.26	0.08–0.88	0.48	0.16–1.40	0.41	0.10–1.79
Marital status
Married or partnered	1.00	Referent	1.00	Referent	1.00	Referent
Not married or partnered	0.59	0.21–1.65	0.77	0.31–1.90	0.76	0.22–2.62
Income ($)
≥121k	1.00	Referent	1.00	Referent	1.00	Referent
81–120k	0.86	0.36–2.08	0.50	0.14–1.78	0.52	0.08–3.27
41–80k	0.14	0.03–0.72	0.88	0.26–3.00	0.78	0.23–2.65
≤40k	0.33	0.07–1.54	0.48	0.12–1.88	0.46	0.08–2.60

Bold font indicates p < 0.05.

Adjusted for cancer center and age at time of survey.

Time since diagnosis

In total, 101 participants completed the survey “early” or between 1 and <3 years after diagnosis, and 236 completed the survey “late” or at least 3 years after diagnosis (Supplementary Table S2). Among early respondents, adherence decreased with decreasing annual household income (OR: 0.25; 95% CI: 0.07–0.93 for income $81,000–$120,000, OR: 0.24; 95% CI: 0.07–0.84 for $41,000–$80,000, OR: 0.13; 95% CI: 0.03–0.60 for ≤$40,000) relative to those with annual income ≥$121,000 (Table 4). Among late respondents, adherence decreased with lower levels of education (OR: 0.40; 95% CI: 0.19–0.85 for <4-year college degree).

Table 4.

Logistic Regressions of Indicators of Socioeconomic and Support Status with Adherence to Recommended Health Care Guidelines Among Adolescent and Young Adult Cancer Survivors, By Time Since Diagnosis and By Sex

	Characteristic
	Time since diagnosis				Sex
	1 to <3 years (N = 101)		3+ years (N = 236)		Females (N = 242)		Males (N = 102)
	OR ^a	95% CI	OR ^a	95% CI	OR ^a	95% CI	OR ^a	95% CI
Insurance
Private	1.00	Referent	1.00	Referent	1.00	Referent	1.00	Referent
Medicaid/medicare	0.24	0.05–1.25	1.51	0.68–3.33	0.57	0.24–1.35	2.26	0.67–7.64
None or self-pay	0.57	0.12–2.76	0.52	0.16–1.72	0.68	0.22–2.13	0.43	0.08–2.42
Education
Postgraduate degree	1.00	Referent	1.00	Referent	1.00	Referent	1.00	Referent
4-year college degree	1.22	0.45–3.27	0.61	0.31–1.18	0.90	0.48–1.66	0.35	0.12–0.99
<4-year college degree	0.76	0.25–2.28	0.41	0.19–0.89	0.37	0.17–0.82	0.49	0.16–1.52
Marital status
Married or partnered	1.00	Referent	1.00	Referent	1.00	Referent	1.00	Referent
Not married or partnered	0.91	0.34–2.43	0.87	0.45–1.69	0.86	0.46–1.61	0.76	0.25–2.29
Income ($)
≥121k	1.00	Referent	1.00	Referent	1.00	Referent	1.00	Referent
81–120k	0.25	0.07–0.93	1.08	0.50–2.35	0.87	0.41–1.82	0.42	0.11–1.65
41–80k	0.24	0.07–0.84	0.65	0.30–1.42	0.34	0.16–0.74	1.19	0.36–3.92
≤40k	0.13	0.03–0.60	0.71	0.29–1.75	0.25	0.09–0.69	1.23	0.30–4.99

Bold font indicates p < 0.05.

Adjusted for cancer center and age at time of survey.

Sex

The majority (70%) of participants identified as female, with similar adherence by sex (37% females; 35% males, Supplementary Table S3). Among females, adherence was less likely among those with lower education level (OR: 0.37; 95% CI: 0.17–0.82 for <4-year college degree, Table 4) and lower income (OR: 0.34; 95% CI: 0.16–0.74 for $41,000–$80,000; OR: 0.25; 95% CI: 0.09–0.69 for <$40,000). Among males, there was a suggestion that adherence was less likely among those with lower education levels (OR: 0.35; 95% CI: 0.12–0.99 for 4-year college degree; OR: 0.49, 95% CI: 0.16–1.52 for <4-year college degree).

Discussion

In this cross-sectional study of AYA cancer survivors, adherence to health care recommendations was associated with higher levels of education and household income. In subgroup analyses, adherence was less likely among breast cancer survivors and females with lower levels of education and income. Within 1 to less than 3 years of diagnosis, adherence was positively associated with income; 3 or more years after diagnosis, adherence was lower than in earlier years and was positively associated with level of education.

AYA survivors are not only at risk for cancer recurrence, late effects of therapy, and secondary malignancies, but also have increased risk of other serious morbidities compared with peers without history of cancer. Increased cardiovascular disease, obesity, hypertension, asthma, disability, and poor mental and physical health have been observed among AYA survivors.³ Given these long-term comorbidity risks, lifelong follow-up care is recommended for AYA survivors, and improved adherence may lead to improved health outcomes and longer survival. However, education and income are not easily modifiable and thus, knowledge gained from this analysis is more relevant to understanding barriers to adherence and to identifying groups where more vigorous outreach efforts may be warranted. Health literacy may mediate the relationship between SES and health outcomes and may be a more modifiable factor suitable for targeted interventions.^24,25 Patient navigator programs are effective in improving access to cancer therapies and may also improve adherence to survivorship care plans, although there is a paucity of research in that area.²⁶

Our results are consistent with prior studies indicating that higher SES is associated with improved adherence to health care screening recommendations.^27,28 In a report of 128 AYA melanoma patients identified through the Los Angeles County cancer registry, higher SES (based on area-based indices) was positively associated with annual physician-conducted skin examination (PSE).²⁷ Our study builds on these findings by evaluating discrete and more nuanced SES indicators, and by identifying education level and income as important considerations in understanding nonadherence in AYA survivors. A preponderance of participants in our study reported having private insurance, limiting our ability to examine the source of health care coverage as a factor influencing adherence. Nonetheless, the salience of lower income as a risk factor for nonadherence emphasizes that access to health care depends on financial resources, and not solely on access to private insurance.

In that same study of AYA melanoma survivors, Hispanic ethnicity was negatively associated with annual PSE,²⁷ and previous studies in cancer survivors have also demonstrated that Black survivors are at increased risk of nonadherence.^29,30 We observed similar adherence in Asian, White, and Hispanic/Latinx survivors, but the small number of Black participants in our study limited our ability to assess adherence in this group.

AYA cancer survivors have increased disruptions in both work and education due to treatment and treatment sequelae, and report difficulties reintegrating into school and work after treatment, possibly due to fatigue, physical impairments, or concentration deficits.³¹ Compared with adults without a cancer history, AYA survivors are more likely to report increased missed workdays due to illness or injury, increased days in bed due to poor health, greater annual medical expenditures, and greater productivity losses.³² Similarly, adult survivors of childhood cancer report higher levels of unemployment or being between jobs more often than their siblings.³³ Derailment of education and employment opportunities during treatment may also contribute to lower income in AYA cancer survivors.

AYA survivors are thus at higher risk of socioeconomic adversity, which can subsequently affect adherence to health care guidelines. Compared with individuals without a cancer history, cancer survivors are more likely to delay and forgo recommended medication use due to cost. National Health Interview Survey data were used to evaluate ∼1000 AYA cancer survivors and comparison adults without a cancer history. Survivors were more likely to report cost-related medication noncompliance and that they could not afford medication. Uninsured survivors were also more likely to report medication noncompliance.³⁴

This is concordant with studies of income and adherence in other survivor populations and supports our findings that survivors with lower income were more likely to be nonadherent to health care recommendations.^35,36 Our results suggest this may be particularly relevant for survivors within 1 to less than 3 years of diagnosis, a critical period when income loss due to treatment or complications may be especially impactful. Importantly, the NCCN recommends that supportive care services and interventions for socioeconomic issues are included in survivorship care plans.³⁷

Our results should be interpreted in the context of several limitations. This was a cross-sectional study using data from a single time point. Subgroup sample sizes were small; it is possible we did not detect some associations. Although we included patients from four diverse metropolitan areas, the majority of participants were White, Non-Hispanic/Latinx, college educated, and privately insured. Participants living in urban areas near the primary site locations may have greater incomes or access to health care resources than survivors in rural areas. We enrolled only English-speaking participants, missing an important segment of AYA cancer survivors that may also be at increased risk of nonadherence to recommended health care guidelines due to language barriers. Race, ethnicity, and SES factors are intertwined, and the limited representation of minority races and ethnicities may have masked potential confounding and limited our ability to examine group-specific results. Another limitation is the possibility of selection bias, as nonrespondents may have differed from those who completed the survey with respect to some factors we examined.

Additionally, patients who had previously received focused survivorship care were excluded due to the original trial design and primary intervention; it is unknown how they may have differed from our respondents. However, studies evaluating the efficacy of survivorship care plans have not demonstrated a strong impact on adherence^38–40; therefore, exclusion of these patients may not have significantly altered adherence levels in our analyses. Finally, adherence scoring was based on self-report.²⁸ It is possible AYA survivors received recommended surveillance tests but were unaware or did not recall receipt, thereby underestimating the proportion of adherent subjects. However, knowledge of recommended health care screenings and increased comorbidity risks are crucial aspects of adherence; future studies should examine the extent to which survivors accurately recognize various aspects of recommended cancer follow-up care.

This is one of the first studies to describe associations between adherence to health care recommendations in relation to SES and social support in a multicenter cohort of AYA cancer survivors. Our results suggest strong associations with lower adherence across nearly all subgroups for those with lower levels of education and lower income. These findings indicate a need to target these at-risk AYA survivors to address access, knowledge, and other needs that are barriers to health care. Further research will help to identify barriers to care for AYA cancer survivors, and to improve outreach to assist all survivors achieve optimal follow-up care and prevent avoidable comorbidities.

Footnotes

Authors' Contributions

Conceptualization (A.G.H., K.L.S., P.A.G., L.A.J., S.C.P., A.P., B.A.M., and K.S.B.), Data curation (A.G.H., E.J.R., K.L.S., and K.S.B.), Formal analysis (A.G.H., B.A.M.), Methodology (A.G.H., K.L.S., B.A.M., and K.S.B.), Writing original draft (A.G.H., B.A.M., and K.S.B.), Writing review and editing (A.G.H., K.L.S., T.G.K., P.A.G., L.A.J., S.C.P., A.P., E.J.R., B.A.M., and K.S.B.).

Ethics Approval

The protocol was approved by the Institutional Review Boards of the Coordinating Center, Fred Hutchinson Cancer Research Center, and of each of the other participating sites.

Consent to Participate

Informed consent was obtained from all individual participants included in the study.

Funding Information

Funded by grants from the LIVESTRONG Foundation and the National Cancer Institute U01 CA246659 and R01 CA215134.

Supplementary Material

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Supplementary Material

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