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Room: Congress Hall B
Time: Fri 10:15 AM-11:30 AM

Informal Care & Economic Evaluations

Chair: Job van Exel (Erasmus University Rotterdam)

Session Description

A large part of the total care for people with health problems is provided by family or friends. These informal caregivers often provide care for several years and for many hours per week, and care tasks may be burdensome and unpleasant to perform. Providing informal care to a loved one can therefore be straining and have a profound impact on the caregiver’s life. Consequently, informal care should be included in economic evaluations of health care interventions adopting a societal perspective. This is supported by theory and several national guidelines for these evaluations. Nevertheless, in practice informal care is often ignored in economic evaluations. This is problematic since considering informal care a 'zero cost' substitute for formal care may result in non-optimal decisions from a societal perspective, at the cost of informal carers.
In this session we will present different instruments to measure and value informal care, and consequently include it in economic evaluations. The construct of caring will be the topic of the first presentation. The focus will be on the difference of this construct and health-related quality of life. Further, the validity of the Caregiver Experience Scale instrument to measure this construct will be discussed.
The second and third paper presented in this session will focus on another instrument to measure care effects; the CarerQol instrument, based on Dutch and US experiences with the scale. This instrument provides a description of the caring state and a valuation of general quality of life. In the second paper, based on a US study, the CarerQol will be related to different validated measures, such as the HUI and SF36 for caregivers of children with craniofacial birth defects and autism spectrum disorders. While chronic conditions of childhood can result in additional caregiving needs (informal care) that may affect the health and well-being of caregivers, the recently developed CarerQol instrument has not been evaluated in caregivers of children with chronic conditions.
The third paper will present results on psychometric properties (construct, clinical validity, test-retest reliability) of the CarerQol among a heterogeneous population of carers and a sample of carers of institutionalised elderly from the Netherlands. Overall, the papers presented in this session show that conventional measures of effects used in economic evaluations are not suitable for caregivers and provide validated instruments to measure the effects of informal care giving.

Session Organizer: Werner Brouwer (Erasmus University Rotterdam)

Presentations

1. The construct of the caring experience

   Presenter: Hareth Al-Janabi (University of Birmingham)

2. The CarerQol instrument in relation to measures of health utilities and quality of life outcomes in caregivers of children with craniofacial birth defects

   Presenter: J. Mick Tilford (University of Arkansas for Medical Sciences)

3. Measuring ‘care-related quality of life’ of informal caregivers for use in economic evaluations: psychometric properties of the CarerQol instrument

   Presenter: Renske Hoefman (Erasmus University Rotterdam)