Quality-of-life of patients with Parkinson’s disease

Abstract

Primary objective: To describe factors influencing the QoL of patients with Parkinson’s Disease (PD), as experienced by patients themselves.

Research design: A qualitative design was used to investigate which factors influence the QoL of patients with PD as this design allows one to focus sufficiently on (reporting) the experiences of patients and their perspectives.

Methods and procedures: Interviews with patients (n = 27) were organized which formed the input for four focus groups and participants were selected by the Dutch Parkinson Association (PV).

Main outcomes and results: The results illustrate that patients mentioned a broad array of issues related to their QoL, including intra- and interpersonal factors, quality of care, societal pressure and communication. Participants developed a model symbolizing a radar wheel to illuminate the complex and dynamic inter-relations between the themes affecting their QoL. How the set of factors actually influences a person’s life differs per patient and per situation.

Conclusions: The QoL of patients with PD is influenced by many interacting factors related to their health, personal relations, care, communication and society. To improve the QoL and care for persons with PD, all factors should be taken into account. Person-centred care recognizes the uniqueness and capabilities of patients with PD.

• Parkinson’s disease
• patient involvement
• quality-of-life

Acknowledgements

We want to thank all participants in the research project for their openness and effort. We thank the PV for making this research possible. Special thanks go to the research partners, the other experiential researchers, the participants in the voice-over group and on the advisory committee.