There are more than 13.7 million cancer survivors in the United States and this number is expected to grow to 18 million by 2020 because of improved outcomes from care and the aging of the population. Although cancer health disparities are well-described for incidence, diagnosis, and treatment, little is known about qualitative disparities among long-term survivors. At Vanderbilt-Ingram Cancer Center (VICC), an NCI-designated comprehensive cancer center, and Meharry Medical College, a minority serving institutional partner, we conducted focus groups with cancer survivors as part of formative research for reducing disparities in cancer survivorship.

Methods: Adult cancer survivors were recruited from the institutional tumor registry lists at VICC (n=21) and MMC (n=20). Eligibility for participation included a primary breast (female), colorectal, lung or prostate cancer (male) diagnosed during 1995-2010 with survival for a least one year since diagnosis; age >35 years at the time of diagnosis; and English speaking.

Four focus groups at MMC and at VICC, one for each cancer site at both institutions, included 15/20 African Americans at MCC and 1/21 African Americans at VICC. The responses of 41 survivors to questions about their sources of information and support, stressors, coping strategies, caregiver concerns, and unmet needs were audio-recorded. Transcriptions were analyzed using Atlas.ti and narrative methodology to identify psychosocial needs and assets.

Results: Information about cancer and cancer treatment was obtained from physicians and/or and family members by almost half of focus group participants, followed by the internet and print materials. The number of sources of information reported by focus group participants ranged from 0 to 5, with MCC survivors reporting they used slightly more sources of information than those from VICC. Family and friends were identified most often by survivors from both settings as sources of support during cancer treatment, followed by healthcare providers, mentioned more often by VICC focus group participants. God was mentioned more frequently at MMC as a source of support, while survivors from VICC were more likely to say they were supported by church friends. Almost half of focus group participants at both sites described a variety of lingering thoughts associated with psychosocial difficulties at diagnosis and treatment. While changes in functioning were mentioned by more than half of the focus group participants, several individuals described those changes as resolving or not stressful.

Current stressors identified by focus group participants included neuropathy, incontinence or excessive urination, memory loss, hot flashes, heat and cold sensitivity, pain secondary to medication, fatigue, impotence, and respiratory difficulty. Fear of recurrence or second cancers were indicated as current stressors by just under half of the focus group participants. Next most frequently mentioned stressors were concerns about the well-being and health of partners and children, and difficult emotions, followed by financial worries (including lack of or uncertainty about insurance coverage) and stress associated with work. One survivor at MCC and four at VICC indicated they are experiencing no significant stress associated with cancer treatment or other aspects of their lives.

Discussion: Given the small number of study participants, the results are useful primarily for generating hypotheses to be examined with a larger sample. They suggest that populations served in the two settings may differ in the sources of information and support they access, and the kinds of stressors they face following the end of treatment for cancer. Outcomes from this study and a needs survey study are being used to design nurse navigation interventions to improve health outcomes among survivors.

Citation Format: Rebecca Selove, Maya Foster, Debra Wujcik, Maureen Sanderson, Pamela C. Hull, Dira R. Ashworth, Amaka Okafor, David Shen-Miller, Steven Wolff, Debra L. Friedman. Psychosocial resources and needs of cancer survivors treated at a comprehensive cancer center or a minority-serving institution. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr A62.