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Keywords:

  • survivors of adolescent and young adult cancer;
  • health care access;
  • health insurance;
  • cost of medical care

Abstract

  1. Top of page
  2. Abstract
  3. MATERIALS AND METHODS
  4. RESULTS
  5. DISCUSSION
  6. FUNDING SOURCES
  7. REFERENCES

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 = 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 = 1.67, 95% CI = 1.44-1.94). 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 insufficient without adequate strategies to reduce their medical cost burdens. Cancer 2012. © 2012 American Cancer Society.

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 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

  1. Top of page
  2. Abstract
  3. MATERIALS AND METHODS
  4. RESULTS
  5. DISCUSSION
  6. FUNDING SOURCES
  7. REFERENCES

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 = 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 = 67,216 eligible participants as controls and N = 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 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 = 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 = 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.

Other Measures

We examined sex (male or female), current age (grouped as 20-29 and 30-39 years), and race/ethnicity (non-Hispanic white, non-Hispanic black, Hispanic/Latino, and other/mixed). Other demographic variables included marital status, highest educational attainment, household income, and current employment status, categorized as in Table 1.

Table 1. Characteristics of BRFSS AYA Survivors and Controls (Ages 20-39 y)
CharacteristicAYA Survivors N = 979Controls N = 67,216P
NWeighted %NWeighted %
  • AYA indicates adolescent and young adult; BRFSS, Behavioral Risk Factor Surveillance System.

  • a

    Race/ethnicity missing for N = 4 survivors; N = 412 controls.

  • b

    Education missing for N = 61 controls.

  • c

    Marital status missing for N = 1 survivor; N = 153 controls.

  • d

    Household income missing for N = 65 survivors; N = 6000 controls.

  • e

    Employment status missing for N = 2 survivors; N = 154 controls.

  • f

    General health status missing for N = 3 survivors; N = 238 controls; Physical distress missing for N = 8 survivors; N = 506 controls; Mental distress missing for N = 10 survivors; N = 588 controls.

Sex     
 Female8568041,72550<.001
 Male1232025,49150 
Age, y     
 20-291692421,96245<.001
 30-398107645,25455 
Race/ethnicitya     
 Non-Hispanic white7337546,18661<.001
 Non-Hispanic black6986,71911 
 Hispanic/Latino70108,46320 
 Other/mixed10385,4368 
Highest completed educationb
 ≤High school education3393721,52134.16
 Some college/vocational3383219,55629 
 ≥College3023126,07836 
Marital statusc     
 Married5476339,60654<.001
 Unmarried couple3833,7277 
 Single1561417,12332 
 Divorced or separated227196,2787 
 Widowed10<1329<1 
Household incomed     
 <$20,000233229,92618.25
 $20,000-$49,9991971911,81319 
 ≥$50,0004845939,47763 
Employment statuse     
 Employed5966147,24167<.001
 Out of work105116,24612 
 Unable to work11292,0193 
 Not in labor force1641911,55618 
General health statusf     
 Excellent/very good/good7017360,89791<.001
 Fair/poor275276,0819 
Frequent physical distressf
 <15 d/mo7487962,35294<.001
 ≥15 d/mo223214,3586 
Frequent mental distressf
 <15 d/mo6947259,01289<.001
 ≥15 d/mo275287,61611 

We also used measures from the Centers for Disease Control and Prevention's health-related quality-of-life measure (CDC-HRQOL-4, known as the “Healthy Days Measures”) to assess self-rated general health and number of healthy days in the past month. The CDC-HRQOL-4 has been validated in several noninstitutionalized US populations, and performs well in populations with chronic conditions.16 We used the HRQOL-4 general health status measure, where respondents indicated their health as excellent, very good, good, fair, or poor (dichotomized as excellent/very good/good, or fair/poor), and summary measures of unhealthy physical and mental health days in the past month (Frequent Physical or Mental Distress = physical or mental health was not good for 15 or more days in the past 30 days).17

Statistical Analysis

We generated demographic estimates for the cancer and control samples and examined cancer-specific variables by sex for the cancer survivors. We then assessed the relationship of survivor status with the 4 binary indicators of access to and utilization of health care (having no health insurance coverage, having no personal health care provider, having no routine check-up in the past year, and not seeing a doctor in the past year due to cost). Using multivariable generalized linear models with logit link and binomial family, we generated relative risks (RR) and 95% confidence intervals (95% CIs) to examine the association for these measures of interest.18 These models were run with the full cancer sample and then as secondary analyses using only the restricted cancer sample.

We also calculated adjusted proportions reporting the health care outcomes by age, race, and sex and, as relevant, insurance status, allowing for an interaction between survivor/control status and the measure of interest. Finally, in multivariable generalized linear models, we examined the association of health status with the health care measures among survivors, adjusting for time since diagnosis. Because BRFSS uses a complex sampling design, all results are reported weighted by BRFSS survey design and for nonresponse. We used the unconditional subpopulation approach available as part of the SVY command in Stata, release 12 (StataCorp, College Station, Tex) to correctly calculate the standard errors for our sample of interest.19 Statistical significance was α = 0.05. All results are based on the full sample unless otherwise reported.

RESULTS

  1. Top of page
  2. Abstract
  3. MATERIALS AND METHODS
  4. RESULTS
  5. DISCUSSION
  6. FUNDING SOURCES
  7. REFERENCES

AYA survivors, on average, were older than the control sample (33.1 years [standard deviation = 3.6 years] vs 30.0 years [standard deviation = 3.9 years]; P < .001). In Table 1, compared to controls, more AYA survivors were female (80% vs 50%; P < .001) and non-Hispanic white (75% vs 61%; P < .001). Survivors tended to be married more often and employed less often than the control sample. A total of 27% of survivors reported poor or fair health compared to 9% of the controls, and significantly greater proportions of survivors reported frequent physical or mental health distress compared with controls.

Among female survivors, the most common cancer was cervical (52.2%) followed by ovarian (9.2%) and melanoma (8.7%), whereas male survivors were more likely to report non-Hodgkin disease (21%), testicular (19.5%), and Hodgkin disease (13.2%) (Table 2). Although more women reported more than 1 cancer (9.8% vs 3.0% of men), men tended to be within 5 to 10 years of diagnosis at a higher proportion than females (68.4% vs 56.9%).

Table 2. Cancer-Related Variables for AYA Survivors by Sex
VariableFemale AYA SurvivorsMale AYA Survivors
N = 856N = 123
 NWeighted %NWeighted %
  • AYA indicates adolescent and young adult; NA, not applicable.

  • a

    Other cancers include cancers reported by <1% of both female and male survivors (stomach, bladder, pancreatic, colon/rectum, esophageal, and lung), as well as cancers only coded as “Other” by BRFSS.

Most recent diagnosis    
 Cervical44452.2NA 
 TesticularNA 2819.5
 Ovarian829.2NA 
 Melanoma848.7219.0
 Endometrial445.2NA 
 Hodgkin disease234.21113.2
 Thyroid424.141.3
 Breast383.7NA 
 Bone41.363.9
 Leukemia101.343.3
 Brain61.151.2
 Non-Hodgkin disease100.9821.0
 Oral10.414.8
 Head/neck20.421.8
 Liver1<0.122.3
 Renal0031.7
 Othera657.22817.5
Number of cancers    
 176790.211797.0
 2 or more899.863.0
Age at first diagnosis    
 15-2452768.27159.7
 25-3432931.85240.3
Years since first diagnosis    
  5-1044856.97168.4
 11-1525229.62721.6
 16-2415613.52510.0

AYA Cancer Survivors Compared With Controls

Table 3 displays the proportions reporting barriers to health care and the multivariable regression estimates for the survivors compared with controls. The proportion reporting being uninsured was similar in unadjusted comparisons (21% of survivors vs 23% of those without cancer) and did not differ after adjustment in multivariable regressions. A total of 22% of the AYA survivors did not have a medical provider and 40% reported having no routine medical visits in the past year. Although somewhat lower than the controls (31% and 42%, respectively), these estimates were not statistically different and were not modified substantially in the adjusted regression analyses. However, in both the full and restricted sample regression models, survivors were more likely than the control group to report forgoing medical care due to costs in the past year (full sample RR = 1.67, 95% CI = 1.44-1.94; restricted sample RR = 1.55, 95% CI = 1.18-2.06).

Table 3. Relative Risks (RR) and 95% Confidence Intervals (CI) of Health Care Access and Utilization Measures for AYA Cancer Survivors Compared With Controlsa
 UninsuredNot Having a Personal Medical ProviderNot Having Routine Medical Visit in Past YearForgoing Medical Care Due to Cost in Past Year
 Unadjusted %RR95% CIUnadjusted %RR95% CIUnadjusted %RR95% CIUnadjusted %RR95% CI
  • AYA indicates adolescent and young adult; BRFSS, Behavioral Risk Factor Surveillance System.

  • a

    All estimates incorporate weighting for BRFSS sample design. We report unadjusted percents for each outcome, along with multivariable regression estimates that are adjusted for current age, sex, and race. The provider, medical visit, and cost regression models are also adjusted for health insurance coverage.

  • b

    Restricted sample excludes cervical, thyroid, and testicular cancers and cancers indicated as “Other” in BRFSS.

All AYA Cancer Survivors (N = 979) vs Controls (N = 67,216)
 Controls (reference)23%1 31%1 42%1 20%1 
 AYA survivor21%1.210.97-1.5122%0.950.76-1.1940%1.040.90-1.2034%1.671.44-1.94
Restricted sampleb: AYA Cancer Survivors (N = 396) vs Controls (N = 67,216)
 Controls (reference)23%1 31%1 42%1 20%1 
 AYA survivor16%0.910.61-1.3921%0.940.64-1.3833%0.870.69-1.1027%1.551.18-2.06

Differences in Health Care Barriers by Insurance Coverage and Demographic Characteristics

Outcomes of having no provider, no routine care, and avoiding care due to cost are shown in Figure 1 by insurance status for the full sample. In adjusted proportions, more uninsured survivors compared to uninsured controls reported not having a medical provider (63% vs 56%, P = .01) or medical visit in the past year (73% vs 63%, P = .007). Moreover, 76% of uninsured survivors compared to 48% of the uninsured controls reported avoiding medical care in the past year due to costs (P < .001). Insured survivors also reported forgoing medical care more often than controls, but at much lower levels than the uninsured (21% of insured AYAs vs 11% of insured controls; P < .001).

thumbnail image

Figure 1. Adjusted proportions of health care access and utilization for survivors of AYA cancer compared with controls are shown by insurance status. Proportions were adjusted for race, age, and sex, and an interaction by survivor versus control/insurance status. ns, non-significant.

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We next compared adjusted proportions of insurance status within demographic groups to examine if barriers were more evident among specific survivor subgroups for the full sample (results not shown). Female survivors were uninsured more often (23%) than female controls (17%; P = .01), whereas the proportion uninsured did not differ significantly for males (22% vs 17%; P = .82). White survivors tended to be uninsured at higher levels than controls (22% vs 15%, P = .003). Black and other race survivors were uninsured at similar levels as white survivors (20% and 19%, respectively) and did not differ significantly from the controls, whereas Hispanic survivors had higher levels of being uninsured in both the survivor and control groups (31% and 36% respectively; nonsignificant).

There were no significant differences in not having a personal provider or routine visit by sex, age, or race, except that Hispanic survivors were less likely to have routine care than the Hispanic control group (66% vs 34%, P = .008; not shown). However, the AYA survivors differed substantially from controls by these demographic factors in forgoing care due to cost, even when results were adjusted for demographics and insurance status (Fig. 2). Specifically, 44% of AYAs aged 20 to 29 years and 26% of those aged 30 to 39 years reported avoiding care compared to 16% of controls in each of their respective age groups (P < .001 for each). A total of 22% of male survivors reported avoiding care due to costs, compared with 12% of controls, although this was not significantly different, whereas female AYAs did differ significantly as compared with controls (35% vs 18% of controls, P < .001). Thirty-three percent of white survivors versus 15% of the controls had cost barriers (P < .001). Although there were no significant differences for the other race/ethnicity categories, approximately 25% of black and other race survivors reported cost barriers, compared with <20% of the controls.

thumbnail image

Figure 2. Adjusted proportions of survivors of AYA cancer compared to controls who reported forgoing care due to costs are shown by current age, sex, and race/ethnicity. Proportions were adjusted for insurance status, and race/ethnicity, age, and sex as relevant, and for an interaction by survivor versus control and the factor of interest. Tests of significance for race and ethnicity were calculated in stratified models. ns, non-significant.

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Health Status and Health Care Access Among AYA Survivors

The final set of models examined the relationship of health status (fair/poor health) and unhealthy days (≥15 days of poor physical or mental health per month) with the 4 health care access measures among survivors (Table 4). There were no significant associations with being uninsured or having no routine visits. In the fully adjusted model, survivors with 15 or more days of poor mental health were at greater risk for not having a health care provider (RR = 1.87, 95% CI = 1.09-3.24).

Table 4. Association of Health Status/Healthy Days and Health Care Access and Utilization Among AYA Cancer Survivorsa
N = 979UninsuredNot Having a Personal Medical ProviderNot Having Routine Medical Visit in Past YearForegoing Medical Care Due to Cost in Past Year
 RR95% CIRR95% CIRR95% CIRR95% CI
  • AYA indicates adolescent and young adult; BRFSS, Behavioral Risk Factor Surveillance System; CI, confidence interval; RR, relative risk.

  • a

    All estimates incorporate weighting for BRFSS sample design. All models adjusted for age, race, sex, and years since diagnosis, and insurance status as relevant.

  • b

    Independent models include each health status/healthy days individually in a regression model, adjusted for the covariates of interest.

  • c

    Full model includes general health, poor physical health, and poor mental health in the same regression model, adjusted for the covariates of interest.

Independent modelsb
 General health    
  Excellent/very good/good (reference)1 1 1 1 
  Fair/poor1.220.79-1.900.950.64-1.381.160.91-1.491.551.21-1.99
 Days poor physical health        
  <15 days per month (reference)1 1 1 1 
  ≥15 days per month0.920.56-1.510.690.42-1.141.100.84-1.451.491.17-1.91
 Days poor mental health        
  <15 days per month (reference)1 1 1 1 
  ≥15 days per month1.240.80-1.921.640.99-2.711.010.77-1.331.491.14-1.94
Full modelc
 General health    
  Excellent/very good/good (reference)1 1 1 1 
  Fair/poor1.190.70-2.200.940.57-1.541.180.89-1.581.370.99-1.90
 Days poor physical health        
  <15 days per month (reference)1 1 1 1 
  ≥15 days per month0.790.45-1.370.580.31-1.050.990.73-1.361.160.83-1.62
 Days poor mental health        
  <15 days per month (reference)1 1 1 1 
  ≥15 days per month1.230.77-1.971.871.09-3.240.970.73-1.291.311.00-1.73

AYA survivors reporting poor health were approximately 50% to 55% more likely to forgo care due to cost in the past year in models examining each measure independently. When the 3 factors were examined together in the full multivariable regression model, having 15 or more days of poor mental health per month remained marginally significant (RR = 1.31, 95% CI = 1.00-1.73), although the association was attenuated.

DISCUSSION

  1. Top of page
  2. Abstract
  3. MATERIALS AND METHODS
  4. RESULTS
  5. DISCUSSION
  6. FUNDING SOURCES
  7. REFERENCES

Young adult survivors of AYA cancers require consistent medical surveillance due to the long-term effects from cancer treatment. In our population-based assessment using national data from the 2009 BRFSS, we found that long-term AYA cancer survivors report substantial access- and cost-related barriers to utilizing health care, despite having comparable levels of health insurance coverage as similarly-aged adults without cancer. To our knowledge, this study is the first to examine general health care access and use among long-term survivors of AYA cancers, and suggests that improvements in posttreatment health care access must be prioritized for this population.

Access to care was poor for many AYA survivors. More than one-fifth of long-term AYA survivors did not have a medical provider, and 40% reported having no routine medical visits in the past year. Although these estimates did not differ significantly from the control sample in multivariable analyses, these findings are cause for concern in light of the health problems faced by many AYA cancer survivors that necessitate ongoing surveillance and/or care, and demonstrate a lower level of access to medical care than other survivors.6

Cost barriers to medical care were particularly common for survivors, because they were 55% to 67% more likely to report avoiding medical care in the past year due to cost than the controls. Uninsured AYA survivors faced the largest cost barriers to care, with 74% reporting forgoing care due to cost in the past year, substantially higher than the 54% reported in an earlier population-based assessment of uninsured cancer survivors aged 18 to 65 years.6 Although insured AYA survivors reported fewer cost barriers to care than did uninsured survivors, they were still twice as likely as the control group to forgo care due to cost in the past year. The economic costs of receiving health care for many with cancer go beyond out-of-pocket medical costs, and include other costs such as transportation, childcare, and lost wages.20 Even with insurance, the copayments and other out-of-pocket costs may be burdensome to AYA survivors, particularly for those of low income or in poor health who are high users of medical care, and this demonstrates the need to examine how young cancer survivors interpret medical cost and make decisions about when to access medical care.

Although adolescents and young adults are less likely to be insured and more likely than older adults to avoid medical care services,21 our findings suggest that subgroups of AYA survivors may be at additional risk for experiencing health care barriers beyond these generational differences in care. More than two-thirds of uninsured survivors had no personal provider and no routine medical care. Both younger survivors and female survivors reported forgoing medical care in the past year due to cost concerns at a higher level than controls, even in estimates that adjusted for health insurance coverage. Hispanic survivors had the lowest level of insurance among the survivors, and two-thirds of this racial/ethnic group reported having no routine medical care in the past year. Moreover, survivors who reported their health status as fair or poor, or who stated they had 15 or more days of poor mental or physical health per month, reported cost barriers to getting medical care.

AYA survivors in the United States will benefit from the Patient Protection and Affordable Care Act (ACA), because it allows young adults to stay on their parents' health plans until the age of 26, provides insurance plans for those with preexisting conditions, eliminates limits on coverage, and prohibits rescissions of coverage.22 By 2014, state-run insurance exchanges and the Medicaid expansion should provide insurance access to many survivors with chronic health limitations.22, 23 However, the ACA may prove insufficient for at-risk populations such as AYA survivors who require a high level of care. Although the state-run exchanges will provide coverage for individuals with preexisting conditions without access to employer plans,22 the cost sharing required by these plans may be burdensome for survivors with high out-of-pocket costs.24 Furthermore, the Supreme Court's ruling that individual states have the option not to expand their Medicaid programs, jeopardizes health insurance options for the lowest income AYA survivors. Although BRFSS respondents were not asked to report their type of health insurance coverage, it is likely that more AYA survivors are on public health insurance compared to those without a cancer history, similar to other populations of younger cancer survivors.8

Although the ACA is a substantial step toward health insurance parity in the United States, the barriers for AYA survivors go beyond expanding insurance access. AYA populations with the biggest barriers to care, such as uninsured, younger, and nonwhite survivors, need additional support as they transition out of the oncology setting, such as information on community health centers and financial assistance programs, to improve their access to care in the years following their cancer treatment. Also, community providers are often unaware of the health risks associated with AYA cancer. Although we did not have information on whether AYA survivors are receiving survivor-specific medical services (eg, screening for secondary cancers), the low level of general medical use found among the BRFSS AYA survivors suggests that many AYA survivors may require education about their long-term health care needs.25

Certain limitations should be considered in the interpretation of the findings. The response rate for BRFSS in 2009 was 53%,26 potentially affecting the generalizability of our findings to the overall AYA survivor population. Some reports have found that BRFSS may underrepresent hard-to-reach populations, such as minority populations and younger adults,27 suggesting our findings may underestimate the health care barriers in this population. Assessing cancer history via self-report may risk misclassification of cancers and noncancers, although previous studies of BRFSS have found cancer self-report reasonably reliable.15 In addition, we were unable to examine cancer-related medical visits; although some survivors did not report routine care, we may be under-assessing medical care use if some are still seeing their oncology provider. However, long-term cancer survivors should still be receiving primary care services to screen for other conditions, and therefore, this low level of such services is of concern. Also, the controls in our sample may be under-reporting cost barriers to care if they are healthier and do not perceive the need to obtain primary care services.

BRFSS does not include cancer treatment or other cancer-related information; thus, we were limited in exploring aspects such as disease stage at diagnosis or whether survivors were undergoing current cancer-related treatment. However, by focusing on survivors at 5 or more years beyond their first primary diagnosis, the vast majority of our sample should have completed active cancer treatment. In addition, the large number of cervical cancers may be due to female survivors reporting cervical cancer if they had atypical cells or in situ abnormalities, which may have required minimal therapy. However, the subanalyses wherein cervical, thyroid, testicular, and other cancers were removed allows for some control of differences in cancer or treatment severity, and these models were generally similar to our analyses of the full sample. Finally, because we examined several outcomes of health care access, we advise that these results should be interpreted cautiously in light of the multiple comparisons made.

Survivors of AYA cancer are a growing population in the United States with unique, long-term health care needs. Research to improve outcomes for this population is a national priority.28 Although adolescents and young adults in the United States, in general, have lower levels of insurance coverage and health care access, this population-based study shows that many AYA cancer survivors are not receiving primary medical care services and report cost barriers to care at levels beyond these general age differences. Prospective studies are necessary to determine how a cancer diagnosis during adolescence and young adulthood affects education, employment, and other resources, all of which play a vital role in influencing survivors' access to health care services. Given the need to monitor AYA cancer survivors for recurrence and late effects of treatment, increasing the access to health care for this population is of public health importance. Although AYA survivors should be educated about their health risks following cancer treatment, expanding health insurance coverage for young survivors may prove insufficient to increasing their health care access without adequate strategies to reduce their medical cost burdens.

FUNDING SOURCES

  1. Top of page
  2. Abstract
  3. MATERIALS AND METHODS
  4. RESULTS
  5. DISCUSSION
  6. FUNDING SOURCES
  7. REFERENCES

Anne Kirchhoff is supported by the Huntsman Cancer Institute/Huntsman Cancer Foundation.

CONFLICT OF INTEREST DISCLOSURES

The authors made no disclosures.

REFERENCES

  1. Top of page
  2. Abstract
  3. MATERIALS AND METHODS
  4. RESULTS
  5. DISCUSSION
  6. FUNDING SOURCES
  7. REFERENCES
  • 1
    National Cancer Institute. A Snapshot of Adolescent and Young Adult Cancers. http://nci.nih.gov/aboutnci/servingpeople/snapshots/AYA.pdf. Updated October 2011.
  • 2
    Canadian Cancer Society Steering Committee. Canadian Cancer Statistics 2009, Special Topic: Cancer in Adolescents and Young Adults. Toronto, Canada: Canadian Cancer Society; 2009.
  • 3
    Bleyer A, Budd T, Montello M. Adolescents and young adults with cancer: the scope of the problem and criticality of clinical trials. Cancer. 2006; 107(7 suppl): 1645-1655.
  • 4
    Bleyer A, O'Leary M, Barr R, Ries LAG, editors. Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, Including SEER Incidence and Survival: 1975–2000. NIH Publication No. 06-5767. Bethesda, MD: National Cancer Institute; 2006.
  • 5
    Tonorezos ES, Oeffinger KC. Research challenges in adolescent and young adult cancer survivor research. Cancer. 2011; 117(10 suppl): 2295-2300.
  • 6
    Sabatino SA, Coates RJ, Uhler RJ, Alley LG, Pollack LA. Health insurance coverage and cost barriers to needed medical care among U.S. adult cancer survivors age <65 years. Cancer. 2006; 106: 2466-2475.
  • 7
    Weaver KE, Rowland JH, Bellizzi KM, Aziz NM. Forgoing medical care because of cost: assessing disparities in healthcare access among cancer survivors living in the United States. Cancer. 2010; 116: 3493-3504.
  • 8
    Park ER, Li FP, Liu Y, et al. Health insurance coverage in survivors of childhood cancer: the Childhood Cancer Survivor Study. J Clin Oncol. 2005; 23: 9187-9197.
  • 9
    Casillas J, Castellino SM, Hudson MM, et al. Impact of insurance type on survivor-focused and general preventive health care utilization in adult survivors of childhood cancer: the Childhood Cancer Survivor Study (CCSS). Cancer. 2011; 117: 1966-1975.
  • 10
    Nathan PC, Greenberg ML, Ness KK, et al. Medical care in long-term survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol. 2008; 26: 4401-4409.
  • 11
    Nicholson JL, Collins SR, Mahato B, Gould E, Schoen C, Rustgi SD. Rite of Passage? Why Young Adults Become Uninsured and How New Policies Can Help, 2009 Update. New York, NY: The Commonwealth Fund; 2009.
  • 12
    Stanton MW. Employer-Sponsored Health Insurance: Trends in Cost and Access. AHRQ Publication No. 04-0085. Rockville, MD: Agency for Healthcare Research and Quality; 2004.
  • 13
    Short PF, Vargo MM. Responding to employment concerns of cancer survivors. J Clin Oncol. 2006; 24: 5138-5141.
  • 14
    Zebrack BJ, Mills J, Weitzman TS. Health and supportive care needs of young adult cancer patients and survivors. J Cancer Surviv. 2007; 1: 137-145.
  • 15
    Kapp JM, Jackson-Thompson J, Petroski GF, Schootman M. Reliability of health-related quality-of-life indicators in cancer survivors from a population-based sample, 2005, BRFSS. Public Health. 2009; 123: 321-325.
  • 16
    Moriarty DG, Zack MM, Kobau R. The Centers for Disease Control and Prevention's Healthy Days Measures – population tracking of perceived physical and mental health over time. Health Qual Life Outcomes. 2003; 1: 37.
  • 17
    Centers for Disease Control and Prevention. Measuring Healthy Days: Population Assessment of Health-Related Quality of Life. CDC: Atlanta, GA; 2000.
  • 18
    Hosmer DW, Lemeshow L. Applied Logistic Regression.2nd ed. New York, NY: John Wiley & Sons; 2000.
  • 19
    Heeringa SG, West BT, Berglund PA. Applied Survey Data Analysis. Boca Raton, FL: Chapman & Hall/CRC; 2010.
  • 20
    Brown ML, Yabroff KR. Economic impact of cancer in the United States. In: Schottenfeld D, Fraumeni JFJr, editors. Cancer Epidemiology and Prevention.3rd edition. New York, NY: Oxford Univ Press; 2006: 202-214.
  • 21
    Park MJ, Paul Mulye T, Adams SH, Brindis CD, Irwin CEJr. The health status of young adults in the United States. J Adolesc Health. 2006; 39: 305-317.
  • 22
    Moy B, Polite BN, Halpern MT, et al. American Society of Clinical Oncology policy statement: opportunities in the Patient Protection and Affordable Care Act to reduce cancer care disparities. J Clin Oncol. 2011; 29: 3816-3824.
  • 23
    Wolfson J, Ruccione K, Reaman GH. Health care reform 2010: expected favorable impact on childhood cancer patients and survivors. Cancer J. 2010; 16: 554-562.
  • 24
    Gruber J, Perry I. Realizing Health Reform's Potential: Will the Affordable Care Act Make Health Insurance Affordable? New York, NY: The Commonwealth Fund; 2011.
  • 25
    Nathan PC, Hayes-Lattin B, Sisler JJ, Hudson MM. Critical issues in transition and survivorship for adolescents and young adults with cancers. Cancer. 2011; 117(10 suppl): 2335-2341.
  • 26
    Centers for Disease Control and Prevention. Behavioral Risk Factor Surveillance System 2009 Summary Data Quality Report. CDC: Atlanta, GA; 2011.
  • 27
    Schneider KL, Clark MA, Rakowski W, Lapane KL. Evaluating the impact of non-response bias in the Behavioral Risk Factor Surveillance System (BRFSS). J Epidemiol Community Health. 2012; 66: 290-295.
  • 28
    National Cancer Institute. Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer. Report of the Adolescent and Young Adult Oncology Progress Review Group. Bethesda, MD: National Cancer Institute; 2006.