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A multicentre longitudinal observational study of changes in quality of life in people with Parkinson’s disease left untreated at diagnosis
  1. D Grosset
  1. Institute of Neurological Sciences, Glasgow, UK, United Kingdom
    1. L Taurah
    1. London Metropolitan University, Parkinson’s Disease Society, United Kingdom
      1. D J Burn
      1. Newcastle-upon-Tyne Hospital NHS Trust, United Kingdom
        1. D MacMahon
        1. Royal Cornwall Hospitals NHS Trust, Cornwall, United Kingdom
          1. A Forbes
          1. University Hospital Lewisham, United Kingdom
            1. K Turner
            1. Essex Neurosciences Centre, Old Church Hospital, Romford, Havering Primary Care Trust, Romford, United Kingdom
              1. A Bowron
              1. Northumbria Healthcare NHS Trust, United Kingdom
                1. R Walker
                1. Northumbria Healthcare NHS Trust, United Kingdom
                  1. L Findley
                  1. Essex Neurosciences Centre, Oldchurch Hospital, Romford, Havering Primary Care Trust, Romford, United Kingdom
                    1. O Foster
                    1. St George’s Healthcare Trust, London, United Kingdom
                      1. K Patel
                      1. University Hospital of North Staffordshire, United Kingdom
                        1. C G Clough
                        1. Kings College Hospital, United Kingdom
                          1. B Castleton
                          1. North Surrey Primary Care Trust, United Kingdom
                            1. S Smith
                            1. St George’s Healthcare Trust, London, United Kingdom
                              1. G Carey
                              1. North Surrey Primary Care Trust, United Kingdom
                                1. T Murphy
                                1. . Institute of Neurological Sciences, Glasgow, United Kingdom
                                  1. J Hill
                                  1. Essex Neurosciences Centre, Oldchurch Hospital, Romford, United Kingdom
                                    1. U Brechany
                                    1. Newcastle-upon-Tyne Hospital NHS Trust, United Kingdom
                                      1. P MacGee
                                      1. Newcastle-upon-Tyne Hospital NHS Trust, United Kingdom
                                        1. S Reading
                                        1. Newcastle-upon-Tyne Hospital NHS Trust, United Kingdom
                                          1. G Brand
                                          1. Kings College Hospital, London, United Kingdom
                                            1. L Kelly
                                            1. Parkinson’s Disease Society, United Kingdom
                                              1. K Breen
                                              1. Parkinson’s Disease Society, United Kingdom
                                                1. S Ford
                                                1. Parkinson’s Disease Society, United Kingdom
                                                  1. M Baker
                                                  1. European Parkinson's Disease Association, United Kingdom
                                                    1. A Williams
                                                    1. Queen Elizabeth Hospital, Birmingham, United Kingdom
                                                      1. J Hearne
                                                      1. Queen Elizabeth Hospital, Birmingham, United Kingdom
                                                        1. N Quizilbash
                                                        1. Oxon Clinical Epidemiology Services, Madrid, Spain and London, United Kingdom
                                                          1. K R Chaudhuri (chaudhuriray{at}hotmail.com)
                                                          1. Kings College Hospital, Guy’s, Kings, St.Thomas’ School of Medicine, University Hospital of Lewisham, United Kingdom

                                                            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.

                                                            • PDQ 39
                                                            • parkinson’s disease
                                                            • quality of life
                                                            • self reported health
                                                            • untreated

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