Young people with Parkinson's disease: Report of a pilot study to identify the research issues and approaches to data collection

Parkinson's disease (Pd) affects over 120,000 people in the UK. Onset usually begins in people over 50 but in a significant number of people symptoms first develop at a much earlier age without affecting life expectancy. A pilot study to explore quality of life, psychological adjustment and service use for this population initially foundered because of difficulties in contacting a sample of younger people with Pd and motivating them to participate. The pilot study was then extended to determine these people's perceptions of their condition and their needs through content analysis of a magazine circulated by their user group, and a website. Information was also sought from key informants working with young people with Pd. This eventually resulted in contact with the target sample and the collection of valuable data through participation in a conference held by the user group. Reasons for reluctance to become involved in traditional research studies related to denial of having Pd; a desire to conceal it from others, and tiredness associated with Pd, resulting in the need to prioritise activities. This unorthodox piloting proved invaluable in refining the original study questions and identifying more effective approaches to data collection and sampling. The experience of undertaking the pilot study may be of wider interest because it indicated that despite NHS reforms focusing on the user perspective, some health consumers were not enthusiastic about participating in research or informing government policy. The importance of thorough pilot work to the success of the eventual investigation is also demonstrated.