Understanding Patient Engagement in Breast Cancer Survivorship Care

Abstract

BACKGROUND: Breast cancer survivors experience a range of needs in the post-treatment phase as they transition into survivorship and beyond. The transition to survivorship requires breast cancer survivors to actively engage in self-managing their care, but little is known about patient engagement into survivorship care and what factors may contribute to this. Information is needed to further explore patient engagement into survivorship care, what factors may contribute to it and which patients are more likely to engage in their care and thus be better equipped to self-manage during survivorship. PURPOSE: The purpose of this study was to explore how demographic/personal factors and survivorship outcomes are related to and may contribute to patient engagement in early stage breast cancer survivors. METHODS: A cross-sectional, web-based self-report national survey was conducted using measures assessing personal/demographic factors, survivorship outcomes: health-related quality of life (HRQOL), fear of cancer recurrence (FCR), cancer health literacy (CHL) and two measures of patient engagement (patient activation (PA) and knowing participation in change (KPC). There was one open-ended question regarding additional survivorship concerns, not addressed in the previous survey items. Participants were recruited using Dr. Susan Love’s Army of Women Research Foundation and Craigslist. Data were analyzed via bivariate associations and backwards linear regression modeling in SPSS. RESULTS: The final sample included 303 participants (301 females and 2 males) with a mean age of 50.70 years. The sample was predominantly White, non-Hispanic and equally dispersed across the United States. Patient engagement, as represented by PA and KPC, was significantly correlated with 13 predictor variables and there were 10 predictor variables that resulted in significant ANOVA relationships with PA and KPC. In both the KPC and PA regression models, HRQOL significantly predicted for patient engagement. In the KPC regression model, social support and level of education also significantly predicted for patient engagement and receipt of a survivorship care plan contributed unique variance to the model. The open-ended question response categories included: physical concerns, mental health concerns, financial toxicity, social support, body image concerns, other concerns or no concerns/none. CONCLUSIONS: This study provides preliminary evidence that personal/demographic factors and survivorship outcomes may contribute to patient engagement in breast cancer survivors. Using assessment tools that measure factors such as HRQOL, social support, education level and patient engagement may give providers some insight as to which survivors may be ready to engage in survivorship care and those that may need more resources and/or support. Additional studies are needed to replicate and validate these results. More research is needed aimed at maximizing patient-centered care, patient engagement and ultimately improving SC. Keywords: breast cancer survivor, survivorship, patient engagement, health-related quality of life, social support.