Health-related quality of life in persons with Parkinson's disease. Aspects of symptoms, caregiving and sense of coherence.

Abstract Aims: The aim of this thesis was to investigate how the impact of Parkinson’s disease, a chronic neurodegenerative disorder, influences the person’s health-related quality of life. The aim was also to investigate nursing assessment and management of Parkinson’s in elderly persons.

Methods: The study started in1998, one year later a follow-up was conducted. The sample contained in the first year 102 patients recruited from the neurology department at the Lund University Hospital.

The following instruments were used. The Geriatric Depression Scale rated the depressive symptoms and Livingston’s insomnia questionnaire was used to measure sleep disturbance. Parkinsonian symptoms were rated with specific Parkinson disease rating scales, the PDQ-8 and the PDQ-39. The specific scales were complemented with a generic health-related instrument, the SF-36. To capture global subjective states of coping with everyday life in relation to holistic notions of health and well-being the sense of coherence scale was used, and for the determination of functional change over the one-year follow-up the Hoehn and Yahr assessment was used. A caregiver scale assessed the caregiver’s burden and 6 questions from a social contact questionnaire were used to define the structural and qualitative aspects of the social support network. With 8 participants qualitative, informal, conversational interviewing was assessed. Personal interviews were conducted with all patients in their homes. For the statistical analyses SPSS was used.

Results: The results give some insights into what it means to live with Parkinson’s disease. There are many factors involved. The subjects have turned out to have a high prevalence of insomnia and depressive symptoms as well as pain and aches and a worsened ability to handle stress-related problems secondary to the progress of their chronic disease. Women with Parkinson’s disease experience such negative factors as feelings of loss of physical competence and of female competence, of perceived stigmatization and of not being accepted for the person she is, causing strain. Depressive symptoms and an impaired sense of coherence in the caregiver’s, and the patient’s functional status has been found to be strongly related to caregiver burden. Sense of coherence showed to be the best instrument to detect functional impairment during one year. Swedish patients generally had a better quality of life compared to British patients. Conclusion: Many factors influence the subjects negatively and decrease their health-related quality of life. The study has also revealed that not only the subjects suffering from Parkinson’s disease but also their caregivers are strongly influenced by the situation.