A multicentre longitudinal observational study of changes in self reported health status in people with Parkinson's disease left untreated at diagnosis

Grosset, D.; Taurah, L.; Burn, D. J.; MacMahon, D.; Forbes, A.; Turner, K.; Bowron, A.; Walker, R.; Findley, L.; Foster, O.; Patel, K.; Clough, C.; Castleton, B.; Smith, S.; Carey, G.; Murphy, T.; Hill, J.; Brechany, U.; McGee, P.; Reading, S.
May 2007
Journal of Neurology, Neurosurgery & Psychiatry;May2007, Vol. 78 Issue 5, p465
Academic Journal
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 centres in the UK. To compare patients who were left untreated with those who were 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 sociodemographic 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 eight domains of the 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 for the first time self reported health status, an indicator of health related quality of life, in untreated PD. The findings may strengthen the call for re-evaluation of the policy to delay treatment in newly diagnosed patients with PD.


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