Perceptions of persons with Parkinson's disease, family and professionals on quality of life: an international focus group study

Abstract

Purpose. Parkinson's disease (PD) is a progressive neurodegenerative disorder. Motor and non-motor symptoms have an impact on persons' lives. To what extent this is effecting persons' quality of life (QOL) is not clear. Therefore, the aim of this qualitative study was to identify factors that persons perceive as eminently important for QOL.

Method. Focus groups were employed with persons with PD, caregivers and health professionals.

Results. The results, obtained through thematic and conceptual qualitative analysis, largely support the framework of domains and facets of the World Health Organization Quality of Life (WHOQOL) assessment instrument. Three new themes were identified, reflecting (i) practical adaptations to PD, (ii) personal adaptations to PD and (iii) the ability to communicate and the availability of communication supports.

Conclusion. This study demonstrated that focus groups are a valid and reliable way of eliciting views on QOL from persons with PD, caregivers and professionals. The focus group method confirmed the original WHOQOL parameters and also provided some new QOL themes. In addition, the results of this study pointed out that the impact of PD on QOL goes beyond the physical, social and emotional domains of health-related QOL (HRQOL).

Keywords:

• Focus groups
• Parkinson's disease
• quality of life
• WHOQOL instruments

Declaration of Interest:

The study was funded by the European Commission Sixth Framework, SP23 – CT – 2005 - 513723, and was carried out under the auspices of the World Health Organization Quality of Life Group (WHOQOL Group) as part of the DIS-QOL Project. The authors report no conflicts of interest.