Assessment of carer health status and quality of life in Parkinson’s disease

Development, validation and application of a new measure

Across Europe, millions of people act as carers with many doing so in a full time capacity. Their role is a vital part of the provision of health care and is one that is often invisible and underappreciated. Many carers provide 24 hours a day care and experience great hardship including declining physical health and emotional distress. For those carers of people with neurological conditions, this process can be incredibly arduous as they have to cope with both the increasing dependency of their charge as well as all the strains that full time caring brings.

In recent years, far more concern has been given to the views of patients by health services. This has led to the development of patient reported outcome measures designed to evaluate the impact of illnesses, such as Parkinson’s disease (PD), on quality of life and well-being; however, to date, no PD specific carer quality of life measure has been developed. The aim of this study is to develop and validate a quality of life questionnaire for PD carers, with the same rigour as given to the patient questionnaires, thus creating a carer equivalent of the PDQ-39: the most widely used patient reported outcome measure in PD. It is intended that the new measure will provide important information on carers that will inform health policy and future research.