Quality-of-life of patients with Parkinson's disease.
OBJECTIVE
To describe factors influencing the QoL of patients with Parkinson's disease (PD), as experienced by patients themselves.


METHODS
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
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).


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.
VU University Medical Centre, Department of Medical Humanities, EMGO+ Institute for Health and Care Research , Amsterdam , The Netherlands and.
Linda
L
Dauwerse
Annette
A
Hendrikx
Karen
K
Schipper
Chris
C
Struiksma
Tineke A
TA
Abma
D000328:Adult; D017028:Caregivers / Q000523:psychology; D003142:Communication; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands / Q000453:epidemiology; D010300:Parkinson Disease / Q000453:epidemiology / Q000523:psychology*; D036301:Qualitative Research; D011787:Quality of Health Care; D011788:Quality of Life / Q000523:psychology*; D012944:Social Support; D011795:Surveys and Questionnaires
Parkinson’s disease; patient involvement; quality-of-life