Integrating Quality of Life in the Care Pathway of Cancer Patients Undergoing Immunotherapy Treatment: Descriptive, Cross-sectional Survey of an Online Patient Community's Experiences and Expectations

Abstract

Background New cancer treatments, such as immune checkpoint inhibitors (ICIs), can improve survival and health-related quality of life (HRQoL) in patients with cancer. Although long-term monitoring of HRQoL has been shown to improve survival, integration of HRQoL into everyday practice remains poorly documented. Objective This study describes experiences and expectations of patients treated with ICIs regarding a discussion of HRQoL with health care professionals (HCPs) in cancer management. Methods This cross-sectional study was conducted in an online patient community (Carenity) in France. Patients treated with ICIs for cancer, included between September 2018 and January 2019, completed a questionnaire to assess the involvement of HCP in a discussion of HRQoL and when and what was discussed. Results Of 82 patients included (mean age: 56.9 years, 95% CI 54.2-59.6; 46 [56%] male; 34 [41%] with lung cancer), 62 (76%) reported discussing HRQoL at least once with HCPs, mainly general practitioners (54/82, 66%), oncologists (53/82, 65%), and hospital nurses (50/82, 61%). Around half (45/82, 55%) of the patients were satisfied with these discussions. Discussions with the oncologist were at the patient’s initiative (34/53, 64%). Discussions occurred primarily during follow-up visits (40/62, 65%), when adverse events occurred (30/62, 48%), and at treatment initiation (27/62, 32%). The most discussed dimensions were symptoms (48/62, 77%) and physical well-being (43/62, 69%). With respect to expectations, 54/82 (66%) patients considered oncologists as the most important HCPs for discussing HRQoL. These discussions were desirable throughout the care pathway, particularly at diagnosis (63/82, 77%) and when treatment was initiated (75/82, 92%) or changed (68/82, 83%). All HRQoL dimensions were considered important to discuss. Conclusions With only around half of the patients satisfied with HRQoL discussions, impactful HRQoL integration in clinical practice is critical. According to patients, this integration should involve mainly oncologists and general practitioners, should happen at every step of the care pathway, and should be extended to dimensions that are currently rarely addressed.

Digital solutions supporting the quality of life of European cancer patients and their caregivers: a systematic literature review

“…Beutter et al 49 developed and tested a smartphone app called the Lion-App, through which patients with various type of cancer can autonomously measure the QoL with an iterative, user-centered approach, suitable for a daily use. Wilczynski et al 51 focused on the Carenity online patient community in which patients and caregivers can share their experiences, exchange information and advice and also participate in online surveys concerning various aspects of disease perceptions. This platform allowed patients’ to discuss HRQoL with practitioners starting from diagnosis, and not only when side effects arise.…”