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

D Grosset¹, L Taurah², D J Burn³, D MacMahon⁴, A Forbes⁵, K Turner⁶, A Bowron⁷, R Walker⁷, L Findley⁶, O Foster⁸, K Patel⁹, C Clough¹⁰, B Castleton¹¹, S Smith⁸, G Carey¹¹, T Murphy¹, J Hill⁶, U Brechany¹², P McGee¹², S Reading¹², G Brand¹⁰, L Kelly¹³, K Breen¹³, S Ford¹³, M Baker¹⁴, A Williams¹⁵, J Hearne¹⁵, N Qizilbash¹⁶, K Ray Chaudhuri¹⁷

¹ Institute of Neurological Sciences, Glasgow, UK
² The London Metropolitan University, London, UK
³ Newcastle-upon-Tyne Hospital NHS Trust, Newcastle-upon-Tyne, UK
⁴ Royal Cornwall Hospitals NHS Trust, Cornwall, UK
⁵ Kings College Hospital, London, UK
⁶ Havering Primary Care Trust, Romford, UK
⁷ Northumbria Healthcare NHS Trust, Northumbria, UK
⁸ St George’s Healthcare Trust, London, UK
⁹ University Hospital of North Staffordshire, North Staffordshire, UK
¹⁰ Kings College Hospital, London, UK
¹¹ North Surrey Primary Care Trust, UK
¹² Newcastle-upon-Tyne Hospital NHS Trust, Newcastle-upon-Tyne, UK
¹³ Parkinson’s Disease Society, UK
¹⁴ European Parkinson’s Disease Association (EPDA), Kent, UK
¹⁵ University Hospital Birmingham NHS Foundation Trust, Birmingham, UK
¹⁶ Oxon Clinical Epidemiology Services, Madrid, Spain and London, UK
¹⁷ National Parkinson Foundation Centre of Excellence at Kings College Hospital, Guy’s, Kings, St Thomas’ School of Medicine, London, UK

Correspondence to:
Dr K Ray Chaudhuri
Department of Neurology, 9th Floor Ruskin Wing, King’s College Hospital, Denmark Hill, London, SE5 9RS, UK; Ray.chaudhuri{at}uhl.nhs.uk

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.

Abbreviations: DNPD, drug naïve patient with Parkinson’s disease; HY stage, Hoehn and Yahr stage; MTPD, patient receiving monotherapy for Parkinson’s disease; PD, Parkinson’s disease; PDQ, Parkinson’s Disease Questionnaire; UPDRS, Unified Parkinson’s Disease Rating Scale

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