The subjective experience of Parkinson's disease: a qualitative study in 60 people with mild to moderate Parkinson's in 11 European countries

Objective: To describe the experience of being diagnosed and living with mild to moderate Parkinson’s disease (PD).

Method: Semi-structured in-depth interviews with people with Parkinson’s (PwP) in 11 European countries.

Results: Interviews with 60 PwP (52% male) with a mean age of 63 (SD 8.1) years and a disease duration of 9.6 (SD 6.9) years were analysed. PwP often delayed help-seeking due to lack of awareness of symptoms, and there was sometimes a delay in specialist referral. The diagnosis typically came as a “shock”, making PwP unable to absorb all the information, but having a diagnosis for the symptoms was sometimes described as a “relief”. Prompt referral to a specialist, a clear and sensitively communicated diagnosis with reassurance about life expectancy, and a follow-up appointment with a PD nurse or other health care professionals a short interval after diagnosis were all positively viewed. Many reported worries and negative experiences with medications and wished for more time and information before initiating these. Reactions from family, friends, and work colleagues when communicating the diagnosis were typically positive. During ongoing care, longer appointments with specialists and provision of information from health care professionals, patient organisations, and self-help groups were considered important to many PwPs and helped them feel as if they could “take control” and manage their disease more effectively.

Conclusions: Taking into account these findings has the potential to improve the experiences of PwP through improved communication, tailoring of appointments and information provision including self-help approaches.

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Introduction

The impact of Parkinson’s disease (PD) on patients health-related quality of life has been studied extensively, demonstrating that all aspects of physical and emotional functioning can be affected in PD even at the earliest stages of the disease (Schrag et al., 2000). Management of PD aims at improving quality of life in people with Parkinson’s (PwP) using pharmacological, surgical and non-pharmacological strategies (Ferreira, et al. 2013). In order to improve quality of life in PwP, research has primarily focussed on quantitative assessments of motor and non-motor symptoms to optimise their medical treatment and thereby PwP’ wellbeing (Nicoletti et al., 2017). However, relatively little is known on the experience of being diagnosed with and living with PD from the point of view of PwP. This is particularly relevant when advising health care providers and clinicians on the non-medical aspects of managing PwP in current health care systems.

We here report the results of a qualitative study in 60 individuals with a diagnosis of PD from 11 European countries on their experiences of being diagnosed and living with this disorder.

Methods

In 2014 and 2015, a qualitative research study was conducted as part of the “My PD Journey” project by the European Parkinson’s Disease Association (EPDA). Semi-structured interviews on the experiences of being diagnosed and living with PD were conducted with people with Parkinson’s (PwP) in 11 countries.

Principles of Grounded Theory were used to guide the sampling, data collection, and data analysis (Glaser & Strauss, 2009).