Qualitative study of patient and caregiver experiences during multimodality treatment for locally advanced rectal cancer.

Abstract

Background: Locally advanced rectal cancer (LARC) is treated with combined chemotherapy, radiation, and surgery to maximize the potential for cure. This multimodality treatment approach can result in substantial toxicity for patients, including life-altering changes in bowel, urinary, and sexual function as well as decrements in quality of life (QOL). We explored the lived experiences of patients and caregivers during multimodality treatment for LARC.

Methods: We conducted a qualitative study of patients undergoing multimodality treatment for LARC and their designated caregivers. Each participant completed an hour-long individual in-depth interview using a semistructured interview guide covering treatment experiences, coping strategies, and supportive care needs. We transcribed, coded, and analyzed interviews using a thematic analysis approach and constant comparison methods.

Results: We included 21 patients (median age 51 years, 11 women, 17 white, 10 post-surgical resection) and 10 caregivers (6 married/living with patients). We identified five themes among patients and caregivers: (1) the lengthy, complex, and unpredictable nature of multimodality therapy; (2) need to balance receiving detailed information with avoiding information overload; (3) the profound impact that multimodality therapy had on multiple QOL domains; (4) use of coping mechanisms to maintain control and preserve identity; and (5) desire for additional informational and supportive care resources.

Conclusion: Patients and caregivers face important challenges in navigating care for LARC due to the complicated and unpredictable nature of multimodality therapy. Findings from this study should inform the development of interventions to address the immense informational and supportive care needs of patients receiving multimodality treatment for LARC.