Original Article
Limitations in Health Care Access and Utilization Among Long-Term Survivors of Adolescent and Young Adult Cancer Anne C. Kirchhoff, PhD, MPH1,2,3; Courtney R. Lyles, PhD4; Mark Fluchel, MD1,2,3; Jennifer Wright, MD1,3; and Wendy Leisenring, ScD5,6
BACKGROUND: Health care outcomes for long-term survivors of adolescent and young adult (AYA) cancer were compared with young adults without a cancer history, using the 2009 Behavioral Risk Factor Surveillance System data. METHODS: Eligible participants were 20 to 39 years of age. There were N ¼ 979 who self-reported a cancer diagnosis between the ages of 15 to 34 years and were at least 5 years from diagnosis (excluding nonmelanoma skin cancer). The remaining 67,216 participants with no cancer history were used as controls. Using multivariable regressions, relative risks and 95% confidence intervals were generated to examine the relationship of survivor status on indicators of poor health care (uninsured, no personal health care provider, no routine care, and avoiding seeing a doctor due to cost). Adjusted proportions were calculated by demographic groups. Results are weighted by Behavioral Risk Factor Surveillance System survey design. RESULTS: Although the proportion uninsured did not differ (21% of survivors vs 23% of controls), AYA survivors reported forgoing care due to cost at higher levels than controls (relative risk ¼ 1.67, 95% CI ¼ 1.441.94). Cost barriers were particularly high for survivors aged 20 to 29 years (44% vs 16% of controls; P < .001) and female survivors (35% vs 18% of controls; P < .001). Survivors reporting poorer health had more cost barriers. Moreover, uninsured survivors tended to report lower use of health care than did controls. CONCLUSIONS: AYA cancer survivors may forgo health care due to cost barriers, potentially inhibiting the early detection of late effects. Expanding health insurance coverage for young cancer survivors may be C 2012 American Cancer insufficient without adequate strategies to reduce their medical cost burdens. Cancer 2012;000:000–000. V Society. KEYWORDS: survivors of adolescent and young adult cancer, health care access, health insurance, cost of medical care.
More than 69,000 adolescent and young adults (AYA) aged 15 to 39 years are diagnosed with cancer each year in the United States, and the majority will transition to long-term survivorship.1 AYAs are often diagnosed with different cancers than those traditionally seen in adult oncology clinics, with germ cell tumors, sarcomas, leukemias, lymphomas, melanomas, and thyroid cancers comprising the majority of cancers in this age cohort.2,3 Although 80% of AYA patients with cancer survive at least 5 years after diagnosis, many are at risk for developing chronic health conditions from the chemotherapy, radiation, and surgery received during treatment.2,4 Medical care in the years following cancer therapy is particularly important to screen survivors for late effects, such as secondary cancers, infertility, and cardiac conditions. Although adolescent cancer patients have often been included in studies of childhood cancer survivors, young adult cancer survivors aged 20 to 39 years are underrepresented in the survivorship literature.5 Specific to health care access, this age group is often included in aggregate analyses of survivors under age 65 years,6,7 but few studies have examined the unique health care needs of AYAs. Studies of younger survivor populations, such as pediatric and adolescent cancer survivors, have found that survivors under age 35 are more likely to be on public insurance and in general, are more likely to be uninsured than their siblings.8 This is of particular concern because uninsured survivors report lower use of medical care and cancer-specific follow-up care.9,10 In the general population, insurance coverage can be particularly unstable for young adults due to school and job transitions. Younger adults in their 20s, who are often less financially stable and more likely to be employed in jobs that do not offer health insurance benefits, are uninsured more often compared with adults in their 30s.11,12 For AYA cancer survivors, a cancer diagnosis during adolescence and young adulthood could have substantial effects on their health care by impacting their education and labor force outcomes, further limiting their access to important resources such as employer-sponsored health insurance coverage.13 Although AYA cancer survivors report that adequate health insurance coverage is one of their most important health care needs,14 we are aware of no population-level studies Corresponding author: Anne C. Kirchhoff, PhD, MPH, Huntsman Cancer Institute, 2000 Circle of Hope, Salt Lake City, UT 84112; Fax: (801) 585-0900;
[email protected] 1 Center for Children’s Cancer Research, Huntsman Cancer Institute, Salt Lake City, Utah; 2Cancer Control and Population Sciences Research Program, Huntsman Cancer Institute, Salt Lake City, Utah; 3Department of Pediatrics, University of Utah, Salt Lake City, Utah; 4University of California San Francisco, Division of General Internal Medicine at San Francisco General Hospital, San Francisco, California; 5Fred Hutchinson Cancer Research Center, Seattle, Washington; 6Department of Biostatistics, University of Washington, Seattle, Washington
DOI: 10.1002/cncr.27537, Received: December 12, 2011; Revised: February 2, 2012; Accepted: February 21, 2012, Published online in Wiley Online Library (wileyonlinelibrary.com)
Cancer
Month 00, 2012
1
Original Article
for this age group that have assessed insurance coverage and other markers of health care access, such as having a primary care provider and the ability to afford health care. Because the majority of AYA cancer survivors will transition back into the primary care setting following their cancer treatment, assessing limitations in health care access for this population will have important implications for improving their quality of care. The aim of the current study was to determine whether survivors of AYA cancer have poorer health care access and utilization than the general population. Using a population-based sample from the 2009 Behavioral Risk Factor Surveillance System (BRFSS) data, we examined whether survivors of AYA cancer are at a higher risk of being uninsured, having no medical provider, having no routine care in the past year, and forgoing care due to cost in the past year, compared to similarly aged adults without a cancer history. We then assessed whether certain subgroups of AYA survivors, including younger survivors, those lacking health insurance, and those with health limitations, may be at particular risk for health care disparities. MATERIALS AND METHODS Participants
We used the 2009 BRFSS data, an annual, nationally representative survey implemented in the United States, the District of Columbia, Puerto Rico, Guam, and the US Virgin Islands. BRFSS uses random-digit telephone dialing methods to sample noninstitutionalized adults aged 18 years or older. There were 432,607 adults who participated in the 2009 BRFSS, which was the first year that cancer survivorship questions were asked of the full sample. Participants were asked ‘‘Have you ever been told by a doctor, nurse, or other health professional that you had cancer?’’ The test–retest reliability for this question is adequate at k ¼ 0.91.15 The BRFSS survey design, sample characteristics, and questionnaires are available at www.cdc.gov/brfss. We limited our sample eligibility to participants who were aged 20 to 39 years at interview. Of the 74,433 respondents meeting this age range, 5161 did not know whether they had a cancer history, refused to answer the question, or were missing. This left N ¼ 67,216 eligible participants as controls and N ¼ 2056 who self-reported having a history of cancer. Of those with a cancer history, 1616 reported being diagnosed with cancer between the ages of 15 and 34 years. Because we were interested in long-term survivors of AYA cancer (that is, the majority had completed their cancer treatment), we excluded 516 2
who were less than 5 years after diagnosis. We also excluded 97 who reported a history of nonmelanoma skin cancer, because these cancers are typically noninvasive and are treated with minimal outpatient procedures. An additional 24 patients were excluded who did not know their cancer diagnosis or refused to answer the question. With these exclusions, we had N ¼ 979 AYA cancer survivors available for analysis. In addition, we performed secondary analyses using a restricted cancer sample that excluded participants who reported a history of cervical, thyroid, or testicular cancer, as well as cancers grouped as ‘‘other.’’ Because treatment information is not available in BRFSS, this secondary analysis was run to exclude cancers that often present as in situ and those which often only require surgical resection without chemotherapy or radiation. We had N ¼ 396 cancer survivors in the restricted sample. Measures Cancer-Related Measures
Participants indicating a cancer history were asked the age at diagnosis for their first primary cancer and whether they had multiple cancers. Survivors were asked to report the type of cancer for their most recent diagnosis. For diagnosis type, respondents were provided with a list of cancers only if they needed prompting. Using participants’ current age and age at first diagnosis, we calculated the years since diagnosis. Health Care Access and Utilization Outcomes
All BRFSS participants responded to several questions about their health care access and use. Health insurance coverage was asked as ‘‘Do you have any kind of health care coverage, including health insurance, prepaid plans such as health maintenance organizations, or government plans such as Medicare?’’; we classified those who said ‘‘yes’’ as insured. Participants who responded as having 1 or more provider to the question ‘‘Do you have one person you think of as your personal doctor or health care provider?’’ were indicated as having a personal medical provider. Use of routine medical services was asked as ‘‘About how long has it been since you last visited a doctor for a routine checkup?’’ This question specified a routine checkup as a general physical exam, not an exam for a specific injury, illness, or condition. Participants indicating a visit within the past year were designated as having routine care. Inability to access care due to cost was determined by the question ‘‘Was there a time in the past 12 months when you needed to see a doctor but could not because of cost?’’ All participants indicating ‘‘yes’’ were designated as having cost barriers to medical care. Cancer
Month 00, 2012
AYA Cancer Survivors Health Care Access/Kirchhoff et al
Table 1. Characteristics of BRFSS AYA Survivors and Controls (Ages 20-39 y)
Characteristic
AYA Survivors N 5 979
Controls N 5 67,216
P
N
Weighted %
N
Weighted %
856 123
80 20
41,725 25,491
50 50
