title: Challenges in measuring outcomes for caregivers of people with mental health problems.
abstract: Patient-reported outcomes (PROs) are increasingly important in health care and mental health research. Furthermore, caregivers become partners in care for patients with mental disorders, and health workers are more attentive to the expectations and needs of caregivers. A number of outcomes for caregivers are measured and used in daily practice in order to promote actions to improve health care systems and progress in research on the impact of mental disorders on their caregivers. This paper proposes an inventory of the different outcomes and different measurement tools used to assess the impact of disorders, raising a number of methodological and conceptual issues that limit the relevance of measurement tools and complicate their use. Finally, we propose some recommendations promoting the development of relevant outcome measures for caregivers and their integration into current systems of care.
authors.affiliation: Aix-Marseille University, EA 3279-Public Health, Chronic Diseases and Quality of Life-Research Unit, Marseille, France; Department of Psychiatry, La Conception University Hospital, Marseille, France.
authors.forename: Xavier Y
authors.initials: XY
authors.lastname: Zendjidjian
authors.affiliation: Aix-Marseille University, EA 3279-Public Health, Chronic Diseases and Quality of Life -Research Unit, Marseille, France.
authors.forename: Laurent
authors.initials: L
authors.lastname: Boyer
mesh_terms: D017028:Caregivers / Q000523:psychology*; D006801:Humans; D001523:Mental Disorders / Q000451:nursing* / Q000523:psychology*; D008603:Mental Health; D011788:Quality of Life; D057566:Self Report
keywords: burden; caregiver; clinical and social outcome; mental health; patient-reported outcome; psychometrics