Objective: This study reports People with Parkinson’s (PWP) perception on their illness, its meaning to them and their view of the interactions they have with health professionals.

Background: investigations with PWP focus upon the outcome of clinical, physical or pharmaceutical interventions. The opinions of patients and carers are often not recorded, or are lost in a plethora of outcome scales and clinical interventions. Qualitative studies aim to address these shortfalls by trying to describe the patient experience, but often result in a quite complex philosophic small sample descriptions that many readers find difficult to equate with their clinical practice.

Method: This study invited 166 PWP to describe how their Parkinson’s disease (PD) affects them and to give their view on the delivery of care from health professionals. We also recorded their clinical, demographic, disease specific measures (Hoehn & Yahr) and health related quality of life (HRQoL).

Results: Loss of independence (47%) was most frequently reported, followed by loss of social contacts (25%), and isolation (17%). Loss of independence, isolation and social contacts were significantly associated with disease severity, low mood and poorer HRQoL (p < 0.05). Upon their initial diagnosis, 12% reported that PD was adequately explained in a lay person’s language, whereas 40% had little or no explanation of the diagnosis or its possible progression. Over 25% of the sample also reported being given patient information sheets at their initial and subsequent visits which they felt were inappropriate, difficult to read*, and often confusing. In addition, over 45% reported that they did not feel confident enough to ask questions during clinical appointments. Although over 90% of the PWP in this study were in receipt of antiparkinsonian drugs, only 17% reported that the positive or negative effects of treatment were adequately explained to them.

Conclusion: Patient perceptions are very important in the development and delivery of appropriate interventions and as a source of information on the quality of care delivered. Although this study is cross sectional, it does nevertheless highlight the importance of asking, listening and supporting our patients and carers. Collecting this information is one step, the next is to use this information to enrich our learning of patient experiences to influence clinical practice and policy more directly.

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