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. While millions of people worldwide care for sick relatives or friends, their experiences are often overlooked.
There has been limited research on the experiences and quality of life of carers, especially in Parkinson’s Disease, although it is known that the demands of caring can be considerable and can lead to both physical and mental illness. EFNA is supporting researchers in the Health Services Research Unit at Oxford University to explore the impact of caring in Parkinson’s disease.
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.
A review of the existing literature in this field has shown that no validated carer measure of health status and quality of life exists. To this end, a questionnaire has been developed on the basis of in-depth interviews with carers, to assess both carer quality of life and self-reported health status. Recurring themes and aspects of concern for carers were identified, falling broadly within three main categories:
- Emotional well-being and mental health
- Physical health and physical demands
- Social factors
The questionnaire was used in a large-scale postal survey of 280 carers for people with Parkinson's Disease.
Established statistical procedures are being used in the data analysis and final development of the carer measure. The modified questionnaire, together with a generic health status measure will be used in a survey of 500 carers and patients in February 2011, to explore the impact of caring upon carers and provide a greater understanding of their needs and experiences.
Analyses of all data will be conducted and preparation of a web-site (for an on-line user manual) will begin, allowing findings to be reported on the health and wellbeing of carers, and the extent to which this is associated with patient health status.