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Supportive Care in Cancer

, Volume 27, Issue 5, pp 1709–1719 | Cite as

The humanistic burden associated with caring for patients with advanced non-small cell lung cancer (NSCLC) in three European countries—a real-world survey of caregivers

  • R. WoodEmail author
  • G. Taylor-Stokes
  • M. Lees
Original Article

Abstract

Purpose

This study evaluated the humanistic burden on caregivers of patients with advanced non-small cell lung cancer (aNSCLC) as the disease progresses.

Methods

Data were drawn from a cross-sectional study of patients with aNSCLC and their caregivers conducted in France, Germany, and Italy between 2015 and 2016. Data were collected by medical chart review and patient and caregiver questionnaires. The EuroQol five-dimension three-level (EQ-5D-3L) was used to evaluate patient and caregiver health status. Caregivers also completed the Work Productivity and Activity Impairment (WPAI) questionnaire and Zarit Burden Interview (ZBI).

Results

The population for the analysis consisted of 427 caregivers (mean age 53.5 years; 72.6% female; 54.9% spouse; 36.2% in full-time employment) and 427 matched patients (mean age 66.2 years; 68.6% male). Most (69.5%) patients were receiving first-line therapy for advanced disease. Patients’ caregivers provided a mean of 29.5 h of support per week. Significant differences in EQ-5D-3L scores were observed between caregivers of patients receiving first and later lines of therapy in France (0.87 vs. 0.78; p = 0.0055). Among employed caregivers, overall work impairment was considerable and ranged from 21.1% in Germany to 30.4% in France and 29.7% in Italy. Caregivers of patients receiving later lines of therapy in France rated their own health status as significantly worse than did those caring for patients receiving first-line therapy (82.7 vs. 72.9; p = 0.0039).

Conclusions

Informal caregivers provided the majority of support for patients with advanced NSCLC and their caregiving activities impose a significant humanistic burden.

Keywords

Caregiver burden Lung cancer Quality of life Work productivity Anxiety Depression 

Notes

Acknowledgements

Editorial support was provided by Dr. Tracey Lonergan (High Peak Communications) funded by Bristol-Myers Squibb.

Financial support

This research was funded by Bristol-Myers Squibb.

Compliance with ethical standards

The study protocol was approved by a central Institutional Review Board (Freiburg Ethics Commission International—Ref 015/1196).

Conflict of interest

Robert Wood and Gavin Taylor-Stokes are employees of Adelphi Real World, a consultancy to the health insurance and life science industries. Michael Lees was an employee of Bristol Myers Squibb, the sponsor of this research and a global biopharmaceutical company that researches and develops medicines for NSCLC, at the time the study was conducted.

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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Adelphi Real WorldBollingtonUK
  2. 2.Bristol-Myers SquibbParisFrance

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