Abstract
BackgroundNew 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.ObjectiveThis study describes experiences and expectations of patients treated with ICIs regarding a discussion of HRQoL with health care professionals (HCPs) in cancer management.MethodsThis 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.ResultsOf 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.ConclusionsWith 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.
Highlights
Health-related quality of life (HRQoL) is a critical feature of the life of patients with cancer, and a number of instruments have been developed for evaluating this over the past 40 years
62 of 82 (76%) patients had discussed their health-related quality of life (HRQoL) with an health care professional HRQoL (HCP), and only these patients completed the set of questions about their experience
62 of 82 patients (76%) patients had discussed their HRQoL with an HCP at least once
Summary
Health-related quality of life (HRQoL) is a critical feature of the life of patients with cancer, and a number of instruments have been developed for evaluating this over the past 40 years. Systematic monitoring of the patient’s perceptions of HRQoL has been shown to be of benefit in terms of symptom management [7], satisfaction with their care [7], a greater use of supportive care [7], improvement in clinician-patient communication [8,9], and improved overall survival [10,11,12,13], since it allows, among other potential advantages, timely adaptation of treatment in the case of symptom progression or emergence of treatment side effects New cancer treatments, such as immune checkpoint inhibitors (ICIs), can improve survival and health-related quality of life (HRQoL) in patients with cancer. 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
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