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Cited by 50Cancer survivorship and careLung Cancer Diagnosis and TreatmentHealth Systems, Economic Evaluations, Quality of Life

The humanistic burden of advanced non-small cell lung cancer (NSCLC) in Europe: a real-world survey linking patient clinical factors to patient and caregiver burden

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Wood, Robert, Taylor-Stokes, Gavin, Smith, Fiona, Chaib, Carlos·2019·Quality of Life Research
DOI 10.1007/s11136-019-02152-6PMC PMC6571083
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Abstract

PURPOSE: Advanced non-small cell lung cancer (aNSCLC) impacts the lives of patients and their caregivers. This analysis examined the association between patient clinical characteristics and patient and caregiver humanistic burden. METHODS: Data for patients with aNSCLC and their informal caregivers in France, Germany and Italy, were collected between May 2015 and June 2016 via chart review and patient and caregiver surveys. Patients and caregivers completed validated instruments to evaluate their health state (EuroQol-5-dimensions-3-levels [EQ-5D-3L]), work and activity impairment (Work Productivity Activity Impairment [WPAI]) and health-related quality of life (HRQoL; European Organisation for Research and treatment of Cancer Quality of Life Questionnaire [EORTC QLQ-C30]). Caregivers also completed the Zarit Burden Interview (ZBI). Univariate and regression analyses were stratified by patient Eastern Cooperative Group Performance Status (ECOG-PS 0, 1, 2 or 3/4). RESULTS: In total, 1030 patients and 427 accompanying informal caregivers participated. Regression analyses indicated that patients reported lower EQ-5D-3L utility index, EQ-VAS and EORTC QLQ-C30 global health status and greater work and activity impairment with worsening ECOG-PS (all p < 0.05). Caregivers also reported greater activity impairment and higher ZBI scores with worsening ECOG-PS of the patient they were providing care for (all p < 0.05). CONCLUSIONS: As patients' functionality deteriorates as measured by the ECOG-PS, so do their outcomes related to health utility, work productivity, activity impairment and HRQoL. This deterioration is also reflected in increased caregiver burden and activity impairment. There is a need for interventions to maintain patients' physical function to relieve the humanistic burden of both patients and caregivers.

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  • Caregiver burden and poor mental health can adversely affect the caregiver's ability to provide quality care to the patient.

    “This contributes to caregiver burden18 and poor mental health,19 which can adversely affect the caregiver’s ability to provide quality care to the patient.”

    From Multisite Randomized Controlled Trial of CareSTEPS: A Supportive Care Intervention for the Family Caregivers of Patients With Advanced Lung Cancer (2024) · cites this paper as [18]

    The Results (Humanistic burden on caregivers; page unavailable) report greater caregiver burden, activity impairment, and risk of depression as patients’ functional status declines. The paper does not assess whether caregiver burden or poor mental health reduces the quality of care provided to patients. (LLM, conf=0.84)

    Experimental — accuracy not yet measured

  • The prevalence of caregiver burden among family caregivers of cancer patients in general using the ZBI-22 cutoff point of 21 ranged widely from 37 to 82% in other studies.

    “The prevalence of CB among FCs of cancer patients in general using the ZBI-22 cutoff point of 21 ranged widely from 37 to 82% in other studies [9, 20–25].”

    From Caregiver burden among family caregivers of incurable cancer patients in two eastern Mediterranean countries (2021) · cites this paper as [22]

    The Methods (Data collection; page unavailable) confirm that the paper used the 22-item ZBI to assess caregiver burden, and the Results (Humanistic burden on caregivers; page unavailable) report percentages for caregivers of patients with advanced NSCLC. But the paper uses a cutoff of ≥24 to identify risk of depression, not 21 to define caregiver burden, and does not report a 37–82% prevalence range for family caregivers of cancer patients generally. (LLM, conf=0.82)

    Experimental — accuracy not yet measured

  • Using the 10 outcome events per predictor variable rule and considering a 70% prevalence of caregiver burden using the ZBI-22 cutoff score of 21, at least 214 participants were needed for logistic regression analysis including 15 predictor variables.

    “Using the 10 outcome events per predictor variable (EPV) rule and considering a 70% prevalence of CB using the ZBI-22 cutoff score of 21 [20–24], at least 214 participants were needed for logistic regression analysis including 15 predictor variables.”

    From Caregiver burden among family caregivers of incurable cancer patients in two eastern Mediterranean countries (2021) · cites this paper as [22]

    The Methods (Data collection; page unavailable) identify the ZBI as a 22-item caregiver-burden scale, and the Results (Humanistic burden on caregivers; page unavailable) report proportions near 70% in some patient-functionality subgroups. But the paper uses a ZBI score of ≥24 to identify risk of depression, not a cutoff of 21 for caregiver burden. It does not give the 214-person sample-size calculation or a 10-events-per-predictor rule. (LLM, conf=0.86)

    Experimental — accuracy not yet measured

  • La disminución de la funcionalidad (ECOG-PS) del paciente se asocia al deterioro de su calidad de vida, mayor riesgo de depresión para los cuidadores, mayor carga para el cuidador que consecuentemente manifiesta un deterioro de la actividad y mayores puntuaciones ZBI (p < 0,05 para todos).

    “La disminución de la funcionalidad (ECOG-PS) del paciente se asocia al deterioro de su CdV, mayor riesgo de depresión para los cuidadores, mayor carga para el cuidador que consecuentemente manifiesta un deterioro de la actividad y mayores puntuaciones ZBI (p <0,05 para todos).”

    From Sobrecarga de trabajo en cuidadores de pacientes en cuidados paliativos oncológicos: Una revisión bibliográfica (2023) · cites this paper as Wood et al., 2019

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Authors
Wood, R., Taylor-Stokes, G., Smith, F., & Chaib, C.
Affiliations
Adelphi Group (United Kingdom) (GB)
Corresponding author
Wood, Robert
ORCID
Wood, Robert
Venue
Quality of Life Research
Publisher
Springer Science and Business Media LLC
Published
2019-03-02
Volume
28
Issue
7
Pages
1849-1861
ISSN
  • 0962-9343 (ISSN-L)
  • 1573-2649
DOI
10.1007/s11136-019-02152-6
PMC
PMC6571083
OpenAlex
W2919565973
Cited by
50
References
30
Citations by year
2026: 2 · 2025: 6 · 2024: 4 · 2023: 5 · 2022: 17 · 2021: 8 · 2020: 7 · 2019: 1
FWCI
3.45
Type
journal article
Language
en
Open access
Licence
Locations
  • Quality of Life Research (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
Funders
Bristol-Myers Squibb
Topics
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
  • Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Lung Cancer Diagnosis and Treatment
  • Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
Keywords
advanced non-small cell lung cancer, caregiver burden, patient burden, health-related quality of life, labor productivity, activity impairment, ECOG performance status, informal caregivers, Zarit Burden Interview, EQ-5D-3L, EORTC QLQ-C30, physical function
MeSH terms
Adaptation, Psychological, Aged, Carcinoma, Non-Small-Cell Lung, Cross-Sectional Studies, Europe, Female, France, Germany, Health Status, Humans, Italy, Lung Neoplasms, Male, Middle Aged, Quality of Life, Surveys and Questionnaires, Stress, Psychological, Caregivers, Cost of Illness

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