Follow-up Care Education and Information: Identifying Cancer Survivors in Need of More Guidance

Abstract

Background Cancer survivors engage in cancer screenings and protective health behaviors at suboptimal rates despite their increased risk for future illness. Survivorship care plans and other educational strategies to prepare cancer survivors to adopt engaged roles in managing long-term follow-up care and health risks are needed. In a sample of cancer survivors, we identified patient characteristics and psychosocial predictors associated with increased follow-up care informational needs. Methods Cross-sectional surveys were administered to early stage breast and prostate survivors (N=278; 68% breast) at least two years post-treatment from four community hospital programs in New Jersey between May 2012-July 2013. Patient demographics, medical history, psychosocial characteristics (i.e., worries about the future, fear of disease recurrence, and patient activation) and perceptions of oncology and primary care were assessed. Results African American survivors (AOR =2.69, 95% confidence interval [CI] 1.27–5.68) and survivors with higher comorbidity (AOR=1.16, CI 1.01–1.33) were more likely to want additional information to guide follow-up care. Adjusting for race and comorbidities, survivors who wanted more information to guide their follow-up care reported greater worries about the future (p<0.05) and fears about disease recurrence (p<0.05) compared to those who did not want additional information. Conclusions Results emphasize the need to develop cancer survivorship educational strategies that are both responsive to the needs of specific populations (e.g., African American survivors and patients with multiple comorbidities) and the psychosocial profiles that motivate requests for more extensive follow-up guidance.

Survivorship Care Plan Information Needs: Perspectives of Safety-Net Breast Cancer Patients

“…The American Society of Clinical Oncology’s (ASCO) breast cancer survivorship care plan in use at the time of the study was viewed as too technical and lacked detailed information on side effects and self-care [14]. Other research with minority breast cancer survivors reports that SCP templates are too generic [13,14,28]. In a focus group study where male and female cancer survivors reviewed an SCP template for colorectal cancer, Hewitt et al reported that participants preferred SCPs that were more personalized, tailoring the treatment plan to the individual, and were written in layman’s terms [28].…”

“…In addition, cancer survivors have expressed enthusiastic support for SCPs [28,29]. However, the promise of an SCP as a quality improvement tool is dependent in large part on system level issues [13,14]. Oncologists often do not have the time to create individualized SCPs or to discuss the content with their patients.…”

“…Oncologists often do not have the time to create individualized SCPs or to discuss the content with their patients. Despite research reporting the need to develop cancer survivorship educational strategies that are responsive to the needs of specific populations, such as those included in this study, and the psychosocial profiles that motivate requests for extensive follow up guidance [13], adoption of SCPs and development of processes for their delivery have been slow. This is likely due to the resources required for their development, lack of provider buy-in for their utility, and reimbursement issues [13].…”

“…A growing literature is applying these understandings to the development and implementation of SCPs with the aim of infusing SCPs with the perspectives of patients [11–13]. To date, this research suggests that existing SCP templates fail to address the information needs of specific population groups or to be particularly useful to patients as they transition from oncology to primary care [11–14].…”

Health information needs and preferences in relation to survivorship care plans of long-term cancer survivors in the American Cancer Society’s Study of Cancer Survivors-I

“…Minority ethnic groups that do search for health information are more likely to specifically seek support service information and psychosocial support compared with non-Hispanic whites [37, 71]. A recent cross-sectional survey of breast and prostate cancer survivors (>2 years post-treatment) showed that African Americans reported greater informational needs compared with other races [76]. The National Cancer Institute's 2003 HINTS Survey similarly found that cancer information seekers were younger, female, had higher income, and a regular health care provider [73].…”