Patient and provider preferences for survivorship care plans.

PURPOSE: Survivorship care plans (SCPs) are tools used to assist in the transition from treatment to surveillance cancer care. However, few studies have investigated survivor and provider preferences regarding SCPs. Our purpose was to explore survivor and primary care provider preferences regarding content, format, and delivery of SCPs. METHODS: Focus groups and provider interviews were performed in 2010. Five different templates were presented to study participants for their feedback. Each SCP included a treatment summary, surveillance schedule, and care plan for the same fictitious patient. Sessions were transcribed, and field notes taken. RESULTS: Four focus groups (n = 29 survivors) and five primary care providers participated. No cancer survivors had ever received a written SCP. We found clear preferences for the Journey Forward format (with some modifications) and face-to-face delivery (print or electronic) to the survivor by his or her oncologist just before or soon after completion of treatment. Primary care providers preferred an abbreviated version. CONCLUSION: Written SCPs were endorsed by all patients and primary care providers as helpful communication tools. However, if used alone, the SCP would be insufficient to ease the transition to follow-up care. Improved communication and care coordination were identified as important for survivorship care that went beyond what this document might provide.

Self-care recommendations of middle-aged and older adults with sickle cell disease.

Self-care management is an important part of living with a chronic illness. Sickle cell disease (SCD) is a chronic disease with acute, painful exacerbations that often results in a shortened life expectancy. Some middle-aged and older adults with SCD lived with the disease prior to having a diagnosis and without modern advances. The purpose of this study is to share the self-care recommendations of middle-aged and older adults with SCD. Using descriptive qualitative methods, data were gathered through semistructured interviews from 11 individuals living with SCD, including 6 women and 5 men. Self-care recommendations themes included physiological, psychological, and provider-related. The self-care recommendations may be seen as an additional resource or "words of wisdom" for younger adults with SCD who can use the recommendations to better manage their own disease. Additionally, providers may be able to use these recommendations to inform their practice.

Life stories of older adults with sickle cell disease.

Sickle cell disease (SCD) is a chronic disease with acute, painful exacerbations that often results in a shortened life expectancy. We explored the life stories of middle-age and older adults with SCD to ascertain how they explain their longevity and how they see the place of SCD in their lives. Data were gathered using semi-structured interviews with 12 individuals living with SCD--seven women and five men. Respondents offered four main reasons for their longevity: self-care, supportive family/friends, a higher power, and medical care. Respondents reported life satisfactions of family, employment/education, and religious activities. The life stories reflect challenges of often living with a disease prior to diagnosis and without modern advances and the unpredictable nature of the disease. Their stories provide healthcare providers with insight into the supports SCD patients need to improve their health outcomes as they move through the life course.