The CareGiver Oncology Quality of Life questionnaire (CarGOQoL): Development and validation of an instrument to measure the quality of life of the caregivers of patients with cancer

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Abstract

Purpose

The study objective was to validate a specific quality of life (QoL) questionnaire for caregivers of cancer patients, the CareGiver Oncology Quality of Life questionnaire (CarGOQoL), based on the exclusive points of view of the caregivers.

Materials and methods

A 75-item questionnaire generated from content analysis of interviews with caregivers was self-completed by 837 caregivers of cancer patients. In addition to sociodemographic data and patient characteristics, self-reported questionnaires assessing QoL, burden, coping and social support were collected. Psychometric properties combined methods relying on both classical test theory and item response theory.

Results

The final 29 items selected assessed 10 dimensions: psychological well-being, burden, relationship with health care, administration and finances, coping, physical well-being, self-esteem, leisure time, social support and private life; they were isolated from principal component analysis explaining 73% of the total variance. The missing data and the floor effects were low. Some ceiling effects were found for B (34%). Cronbach’s alpha coefficients ranged from 0.72 to 0.89, except private life (PL) (0.55). Unidimensionality of the scales was confirmed by Rasch analyses. Correlations with other instruments confirmed the isolated content and significant links were found with respect to patient’s characteristics. Reproducibility and sensitivity to change were found satisfactory.

Conclusion

The CarGOQoL could provide a reliable and valid measure of caregivers of cancer patients’ QoL which are key-actors in the provision of health care.

Introduction

Cancer is a chronic disease that not only has an impact on patients but also considerably affects the quality of life (QoL) of these patients’ caregivers.1, 2 Researchers have recognised that family caregiving, although having positive aspects for the caregiver, is often responsible of an emotional, physical, social and at time, financial burden.3, 4, 5, 6, 7, 8 Caregivers have been highlighted as key-actors in the provision of health care.9 Caregivers contribute to the patients’ adherence to and acceptance of treatments.10

Most previous studies focused on one or a few specific facets of the impact of cancer (social, psychological, etc.) and used instruments with weak psychometric properties.11, 12

Mancini et al. reported primarily two QoL questionnaires developed for caregiver’ populations.13 The Caregiver Quality of Life Index (CQLI) is a straightforward questionnaire validated using a sample of five subjects.14 The Caregiver Quality of Life Index-Cancer Scale (CQOLC)15, 16 which has been more thoroughly developed,10 was based on a mixed approach combining interviews with cancer patient–caregiver dyads and experts’ points of view,11 validated using a homogeneous sample, with 20 spouses of 22 caregivers interviewed,10 the items generated may not capture all of the domains of interest.13

We report the development and validation of a multidimensional QoL questionnaire for natural caregivers (NCG) of patients with cancer, assessing the impact on the caregivers’ QoL, based on the exclusive caregivers’ points of view, the CareGiver Oncology Quality of Life questionnaire (CarGOQoL).

Section snippets

Population

The sample was composed of caregivers of cancer patients from different oncology departments. Inclusion criteria for cancer patients were in- and out-patients; with a diagnosis of primary cancer; with a localised/regional or distant cancer. Inclusion criteria for caregivers were: 18 years of age or older; designated as the main NCG by the patient; able to speak/read French and free from cancer comorbidity.

Study design

Research assistants invited the caregivers to participate, explaining the purpose of the

Sample characteristics

The study sample included 837 caregivers, aged 18–85 years, 34.6% of whom were men. Caregivers’ and patients’ characteristics are summarised in Table 1.

Scoring

The negatively worded item scores were reversed so that higher scores indicated a higher QoL. For each individual, scores of the dimensions were computed if at least half of its contributive items were answered. The score of each dimension was obtained by computing the mean of the items scores for that dimension. An index was computed as the mean

Discussion

We have designed, developed and validated a self-administered instrument comprising 29 items to assess the impact of cancer and its treatment on caregivers’ QoL.

Our sample size was much larger than that used in other studies that have developed and validated caregivers’ QoL instruments.11 While in other studies, it was difficult to obtain a diverse group of male and female caregivers and caregivers who were partners, parents and children,11 a diverse group of caregivers participated in our

Conflict of interest statement

There are no financial disclosures from any authors, neither personal nor other relationships with other people or organisations within that could inappropriately influence this work.

Funding

This work was supported by two grants from the French National Institute of Cancer (INCa ACI 2004, INCa AOQV 2006) and one from the French Institute for Public Health Research (IReSP).

Financial disclosures

There are no financial disclosures from any authors.

Acknowledgements

The authors thank all patients and caregivers that participated to the study and Zemmour C, Robitail S and Loundou A for their contribution.

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