Patient Perspectives on Value Dimensions of Lung Cancer Care: Cross-sectional Web-Based Survey

Pasquale Varriale; Borna Müller; Grégory Katz; Lorraine Dallas; Alfonso Aguaron; Marion Azoulai; Nicolas Girard

doi:10.2196/37190

Patient Perspectives on Value Dimensions of Lung Cancer Care: Cross-sectional Web-Based Survey

JMIR Form Res. 2023 Jan 26:7:e37190. doi: 10.2196/37190.

Authors

Pasquale Varriale^#¹, Borna Müller^#², Grégory Katz^{3

4}, Lorraine Dallas⁵, Alfonso Aguaron⁶, Marion Azoulai¹, Nicolas Girard^{7

8}

Affiliations

¹ Carenity part of EvidentIQ group, Paris, France.
² Global Access, F Hoffmann-La Roche Ltd, Basel, Switzerland.
³ Université Paris-Cité Medical School, Paris, France.
⁴ PromTime, Paris, France.
⁵ Roy Castle Lung Cancer Foundation, London, United Kingdom.
⁶ Lung Cancer Europe, Madrid, Spain.
⁷ Institut du Thorax Montsouris, Institut Curie, Paris, France.
⁸ Paris Saclay University, Université Versailles Saint Quentin, Paris, France.

^# Contributed equally.

PMID: 36416499
PMCID: PMC9912155
DOI: 10.2196/37190

Abstract

Background: While the lung cancer (LC) treatment landscape has rapidly evolved in recent years, easing symptom burden and treatment side effects remain central considerations in disease control.

Objective: The aim of this study was to assess the relative importance of dimensions of LC care to patients, and to explore the disease burden, including socioeconomic aspects not commonly covered in patient-reported outcomes instruments.

Methods: A questionnaire was sent to patients with LC and their caregivers to rate the value of a diverse set of quality of life dimensions in care, to evaluate communication between health care professionals (HCPs) and patients, and to explore the economic impact on respondents. The survey included questions on the dimensions of care covered by patient-reported outcomes instruments for quality-of-life evaluation (Functional Assessment of Cancer Therapy-Lung scale, EQ-5D, the European Organization for Research and Treatment of Cancer's Core Quality of Life questionnaire, and the European Organization for Research and Treatment of Cancer's Core Quality of Life in lung cancer 13-item questionnaire), as well as the International Consortium for Health Outcomes Measurement (ICHOM) standard set of patient-centered outcomes for LC. The survey respondents were participants on Carenity's patient community platform, living either in France, the United Kingdom, Germany, Italy, or Spain.

Results: The survey included 150 respondents (115 patients and 35 caregivers). "Physical well-being" and "end-of-life care" (median scores of 9.6, IQR 7.7-10, and 9.7, IQR 8.0-10, on a 10-point scale) were rated highest among the different value dimensions assessed. "Physical well-being and functioning" was the dimension most frequently discussed with health care professionals (82/150, 55%), while only (17/100, 17%) reported discussing "end-of-life care." After diagnosis, 43% (49/112) of patients younger than 65 years stopped working. Among respondents who indicated their monthly household income before and after diagnosis, 55% (38/69) reported a loss of income.

Conclusions: Our results showed the relevance of a broad range of aspects of care for the quality of life of patients with LC. End-of-life care was the dimension of care rated highest by patients with LC, irrespective of stage at diagnosis; however, this aspect is least frequently discussed with HCPs. The results also highlight the considerable socioeconomic impact of the disease, despite insurance coverage of direct costs.

Keywords: PROM; QoL; burden; cancer; caregiver; caregiving; cost; distress; economic; economic burden; end of life; health quality of life; independence; lung; palliative; patient reported outcome; perspective; physical function; physical well-being; quality of life; questionnaire; survey.

©Pasquale Varriale, Borna Müller, Grégory Katz, Lorraine Dallas, Alfonso Aguaron, Marion Azoulai, Nicolas Girard. Originally published in JMIR Formative Research (https://formative.jmir.org), 26.01.2023.