JMIR Publications

ABSTRACT

Background:

Current literature indicates that the disease progression harms the quality of life (QoL) of patients with lung cancer (LC). While the LC treatment landscape has rapidly evolved in recent years, easing symptom burden and treatment side effects remains a central consideration in disease control.

Objective:

The study aimed to assess the relative importance of dimensions of LC care to patients and caregivers and to explore the disease burden including economic aspects not commonly covered in patient-reported outcomes.

Methods:

A questionnaire was sent to LC patients and caregivers to assess how they value quality of life dimensions in care, assess communication between health care professionals and patients/caregivers, and evaluate economic impact on respondents. The questionnaire was based on commonly used patient­reported outcomes instruments for Quality of life evaluation (FACT-L, EQ5D, QLQ-C30 and QLQ-LC13), as well as the ICHOM standard set of patient-centred outcomes for lung cancer. The survey’s respondents were participants on Carenity’s platform living in either France, UK, Germany, Italy, or Spain.

Results:

The survey included 150 respondents (77% patients, 33% caregivers). “Physical well-being” and “End-of-life care” (median score of 9.6 [7.7-10] and 9.7 [8.0-10]) were the most important dimension for the patients. “Physical well-being and functioning” was the dimension most frequently discussed with health care professionals (55%), while only 17% reported discussing “End­of-life care.” Among patients younger than 65 years, 43% stopped working after diagnosis. Among respondents that indicated their monthly household income before and after diagnosis, 55% reported a loss of income.

Conclusions:

This study underscores the importance of Quality-of-life priorities for LC patients care. It confirms LC care must consider patients’ psychological distress, desire to maintain independence, and ability to remain physically functional. It highlights the need for enhanced communication between patients and health care providers around healthcare priority and End­of-life care. It also highlights the disease’s considerable socio-economic impact on patients and caregivers, despite insurance coverage of direct costs.