Abstract A39: Health care barriers for rural and urban adult survivors of child and adolescent cancer.
Authors: Kirchhoff Anne C. , Warner Echo L. , Park Elyse R. , Montenegro Roberto E. , Wright Jennifer , Stroup Antoinette M. , Fluchel Mark , Kinney Anita Y. 
Published: August 2014

Introduction: By 30 years after diagnosis, 73% of child and adolescent cancer survivors develop at least one chronic health condition. However, there is little information on the health care needs of rural adults treated for child and adolescent cancer and whether they lack access to care to identify and manage chronic health problems. We explored health care barriers of rural and urban adult survivors of childhood and adolescent cancer.

Methods: We performed semi-structured interviews with 36 adult survivors (currently ages 19-56; mean=41.3 years) identified by Utah Cancer SEER Registry. Eligible survivors were diagnosed before age 21 from 1973-2005. We randomly selected participants from gender, age (18-29, 30-45, and 46-60), and rural/urban strata (rural defined as living in a county with less than 75% of population in an urban area [population ≥2,500]). Interviews were performed from April-June 2012. We asked survivors questions about their health insurance coverage, current use of health care, and barriers to accessing care, and whether they discussed their cancer history with their current provider. Interviews were recorded, transcribed, and analyzed for themes using NVivo 9. Themes were compared by urban and rural status.

Results: Half of participants were male and 90% (N=34) were white. The average age at diagnosis was 12.6 years (SD=6.7). The most common cancers were gonad/germ cell (N=8; 22%), leukemia (N=7; 19%), and lymphoma (N=6, 17%). A total of 15 survivors were rural and 21 urban. The majority of both urban and rural survivors were insured.

Common themes among both rural and urban survivors included: general satisfaction about the services covered by their health insurers, concern about increasing insurance costs, and a history of being denied insurance in the past due to their cancer. Most survivors had a primary health care provider; however, urban survivors described seeing specialty providers more often than rural survivors. About half of survivors discussed their cancer diagnosis and treatment with their current primary care provider. Barriers to discussing their cancer history with providers included a belief that their cancer was in the past so there was no need to discuss it with providers, an impression that their providers did not think their cancer history was worth discussing, and a belief that health problems would have already emerged because their cancer diagnosis and treatment occurred years ago.

Health care barriers described only by rural survivors included: difficulty finding quality health care for specific health problems, limitations in finding providers that were familiar with cancer survivors, and having to drive long distances to see providers. Interestingly, most rural survivors were willing to travel long distances to get the care they needed.

Conclusions: Survivors were generally satisfied with their health insurance, but were concerned about future coverage. Despite access to primary care providers, many survivors are unaware of their health risks and do not discuss their cancer history with their providers. Rural survivors lack access to providers who are knowledgeable about cancer and specialty care to screen for specific health conditions. Both rural and urban child and adolescent cancer survivors and their health care providers require education about the risk of late effects from childhood cancer.

Citation Format: Anne C. Kirchhoff, Echo L. Warner, Elyse R. Park, Roberto E. Montenegro, Jennifer Wright, Antoinette M. Stroup, Mark Fluchel, Anita Y. Kinney. Health care barriers for rural and urban adult survivors of child and adolescent cancer. [abstract]. In: Proceedings of the Fifth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2012 Oct 27-30; San Diego, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2012;21(10 Suppl):Abstract nr A39.