The adaptation of a survivorship care plan for low-income colorectal cancer survivors

Abstract

Introduction: Great progress has been made to understand how cancer survivors transition from treatment to survivorship. However, few studies include the experiences of under-served populations who often face significant disparities in cancer, primarily low-income Black and Hispanic survivors who encounter sub-optimal treatment and inadequate follow-up care. This dissertation sought to address this gap by: 1) Exploring the transition experiences of low-income Black and Hispanic cancer survivors, 2) Using the data to adapt a care coordination tool, called a survivorship care plan (SCP), and 3) Evaluating the usability ofthe SCP among colorectal cancer (CRC) survivors and healthcare providers. Methods: A qualitative interview study was conducted with 26 low-income Black and Hispanic cancer survivors recruited from Boston Medical Center and Boston Public Housing Developments. Interview topics discussed included perceptions of life after cancer treatment, difficulties and challenges, coping mechanisms, post-treatment resources and information, and communication with healthcare providers. Interviews were audiotaped, transcribed verbatim and analyzed using framework analysis. Findings: Survivors reported several challenges to a successful transition, including poor relationships with primary care physicians, family obligations, cost of prescription medications and healthy foods, burden of follow-up appointments, and unaddressed mental health needs. Engagement in spiritual activities and social support were viewed as critical in transitioning to survivorship. Survivors reported wanting survivorship programs that reinforced the importance of follow-up visits, addressed their mental health, were delivered in their native language, and involved the family. Intervention: These findings were used to adapt an SCP for low-income CRC survivors. Eight CRC survivors, five primary care physicians, and 13 oncology providers participated in a Quality Improvement project. All thought the adapted SCP had the potential to be a valuable tool but expressed that the care plan needed improvements by providing concise clinical information, including more patient friendly medical terms, and focusing more on mental health. A final SCP was developed to reflect these changes. Conclusion: These fmdings illustrate that low-income Black and Hispanic cancer survivors have various unmet needs. The adapted SCP template for low-income colorectal cancer survivors attempted to address these needs by incorporating cultural and social factors important to this group.