Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Nov 16, 2020
Date Accepted: Oct 26, 2021
Integrating quality of life in the care pathway of cancer patients undergoing immunotherapy treatment: experience and expectations from a study of an online patient community
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. While long term monitoring of HRQoL has been shown to improve survival, integration of HRQoL into everyday practice remains poorly documented.
Objective:
To describe experiences and expectations of patients treated with ICIs regarding discussion HRQoL with healthcare professionals (HCPs) in cancer management.
Methods:
This cross-sectional study was conducted in an online patient community (Carenity) in France. Patients treated with ICI for cancer, included between September 2018 and January 2019 completed a questionnaire to assess involvement of HCP in discussion of HRQoL, and when and what was discussed.
Results:
Of 82 patients included (median age: 59 years; 56% male; 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%). Half of the patients (45/82; 55%) 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 patients (66%) 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 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 be extended to dimensions that are currently rarely addressed.
Citation
Request queued. Please wait while the file is being generated. It may take some time.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.