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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
  1. D Grosset1,
  2. L Taurah2,
  3. D J Burn3,
  4. D MacMahon4,
  5. A Forbes5,
  6. K Turner6,
  7. A Bowron7,
  8. R Walker7,
  9. L Findley6,
  10. O Foster8,
  11. K Patel9,
  12. C Clough10,
  13. B Castleton11,
  14. S Smith8,
  15. G Carey11,
  16. T Murphy1,
  17. J Hill6,
  18. U Brechany12,
  19. P McGee12,
  20. S Reading12,
  21. G Brand10,
  22. L Kelly13,
  23. K Breen13,
  24. S Ford13,
  25. M Baker14,
  26. A Williams15,
  27. J Hearne15,
  28. N Qizilbash16,
  29. K Ray Chaudhuri17
  1. 1Institute of Neurological Sciences, Glasgow, UK
  2. 2The London Metropolitan University, London, UK
  3. 3Newcastle-upon-Tyne Hospital NHS Trust, Newcastle-upon-Tyne, UK
  4. 4Royal Cornwall Hospitals NHS Trust, Cornwall, UK
  5. 5Kings College Hospital, London, UK
  6. 6Havering Primary Care Trust, Romford, UK
  7. 7Northumbria Healthcare NHS Trust, Northumbria, UK
  8. 8St George’s Healthcare Trust, London, UK
  9. 9University Hospital of North Staffordshire, North Staffordshire, UK
  10. 10Kings College Hospital, London, UK
  11. 11North Surrey Primary Care Trust, UK
  12. 12Newcastle-upon-Tyne Hospital NHS Trust, Newcastle-upon-Tyne, UK
  13. 13Parkinson’s Disease Society, UK
  14. 14European Parkinson’s Disease Association (EPDA), Kent, UK
  15. 15University Hospital Birmingham NHS Foundation Trust, Birmingham, UK
  16. 16Oxon Clinical Epidemiology Services, Madrid, Spain and London, UK
  17. 17National Parkinson Foundation Centre of Excellence at Kings College Hospital, Guy’s, Kings, St Thomas’ School of Medicine, London, UK
  1. 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

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 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.

  • 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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Footnotes

  • Published Online First 10 November 2006

  • Funding: The study was supported by the UK Parkinson’s Disease Society and we also acknowledge an initial educational grant from GSK Pharmaceuticals in 1999 made to the UK Parkinson’s Disease Society to set up the software used for data analysis for this study. Dendrite Corporation helped with the statistical software at the conception of the study.

  • Competing interests: None.

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