Quality of life and other outcome measures in caregivers of patients with schizophrenia

Abstract

There is a growing concern about caregivers of individuals with schizophrenia who assume almost the totality of the patient care. This responsibility exposes them to an intense burden with negative consequences for them and indirectly for patients' health. The aim of this study was to provide an overview of the content and psychometric properties of instruments assessing the experience of caregivers of individuals with schizophrenia. Of the 460 articles screened from 1990 to 2013, 16 instruments were identified focusing on caregivers' burden (8), coping strategies (3), perception of need (3) and quality of life (2). These instruments were based primarily on experts' opinions, except two which were based exclusively on caregivers' view. The psychometric properties were poorly documented for a number of them and no information was published about responsiveness. Future works are needed to involve caregivers in the development of instruments and to explore psychometric properties of these instruments.

Keywords::

• burden
• caregivers
• coping
• family
• perception of need
• quality of life
• review
• schizophrenia

Acknowledgements

Conception and design: J Testart, R Richieri, A Caqueo-Urízar and L Boyer. Data collection and analysis of data: J Testart and L Boyer. Interpretation of data: J Testart, R Richieri, A Caqueo-Urízar, C Lancon, P Auqier and L Boyer. Drafting and writing the manuscript: J Testart, R Richiere, A Caqueo-Urízar and L Boyer.

Financial & competing interests disclosure

This work was supported by the Proyecto Mayor de Investigación Científica y Tecnológica Universidad de Tarapacá 3730-13 and Convenio de Desempeñx2o UTA-MINEDUC. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Key issues

• • Most of the instruments developed between 1990 and 2013 are focused on caregivers' burden.

• • These instruments were based primarily on experts' opinions, except two instruments which were based exclusively on caregivers' point of view (the Experience of Caregiving Inventory and the Caregiver Schizophrenia Quality of Life instrument).

• • Only one quality of life measurement scale has been specifically developed for use with this population.

• • The psychometric properties (validity, reliability) are poorly documented for a number of them and no information is published about responsiveness.

• • Future works are needed to involve caregivers in the development of instruments and explore psychometric properties of these instruments, especially responsiveness.