A multicentre longitudinal observational study of changes in quality of life in people with Parkinson’s disease left untreated at diagnosis

Abstract

Background: The issue of when to start treatment in Parkinson’s disease (PD) remains controversial. Some favour treatment at diagnosis while others opt for a “wait and watch” policy. The effect of the latter policy on the self reported health status of people with PD is unknown.

Aims: To record self reported health status through longitudinal use of a validated PD specific questionnaire (PDQ-39) in untreated PD patients in multiple United Kingdom centres. To compare patients who are left untreated with those who are offered treatment during follow-up.

Methods: A multicentre, prospective “real life” observational audit-based study addressing patient reported outcomes in relation to self reported health status and other socio-demographic details.

Results: 198 untreated PD were assessed over a mean period of 18 months. During two follow up assessments, the self reported health status scores in all 8 domains of PDQ-39 and the overall PDQ-39 summary index worsened significantly (p < 0.01) in patients left untreated. In a comparative group in whom treatment was initiated at or soon after diagnosis, there was a trend towards improvement in self reported health status scores after treatment was started.

Conclusions: This study addresses self reported health status; an indicator of health related quality of life, in untreated PD for the first time and may strengthen the call for re-evaluation of the policy to delay treatment in newly diagnosed patients with PD.