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Medium-term Prognosis of Parkinson's Incident Cohort and Their Carers

This study aims to establish the medium-term prognosis of Parkinson's disease (PD) and other parkinsonism conditions, including survival, disability, motor progression, quality of life, and complications. It will compare these aspects with a control group and identify factors that predict worse outcomes in PD. Additionally, it will document the prognosis of carers in terms of quality of life, burden of care, and mood.

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Medium-term Prognosis of Parkinson's Incident Cohort and Their Carers

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  1. Medium-term prognosis of an incident cohort of people with Parkinson’s and their carers vs a community-based control group Carl Counsell Clinical Reader & Hon Consultant in Neurology Chronic Disease Research Group Division of Applied Health Sciences

  2. Overview • Aims of current grant • Brief overview of PINE • Results • Implications / impact on patients and carers • Future plans

  3. Aims of the grant • establish the medium-term prognosis of PD + other park: • survival, disability, motor progression, quality of life, motor and non-motor complications. • compare some of these aspects of prognosis with an age-gender matched control group. • identify factors that predict worse outcome in PD • document the prognosis of carers with regards to quality of life, burden of care, and mood.

  4. PINE Study Methods 1: Incidence period / population: Pilot: 18 months Nov 2002 – April 2004 (149,000 in 18 GPs) Main: 36 months April 2006 – March 2009 (317,000 in 37 GPs) Ascertainment: • Referrals from GPs • Referrals from hospital consultants • Hand-searching referral letters (neurology & DOME) • Electronic searching (GP, hospital discharge data) • Screening over 65 and over 75’s Inclusion Criteria • Parkinsonism ( 2 of tremor, bradykinesia, rigidity, instability) • First suspicion during incident period • Not drug-induced

  5. Methods 2: assessments Baseline assessment 1: ? eligible • standard history and examination including motor UPDRS • clinical diagnosis If eligible  given study info & offered consent (a) None (b) Notes review (c) Survival (d) Full Baseline assessment 2: • Risk factors • Complete UPDRS and timed tests • Cognitive function (MMSE, MMP) • Disability (Schwab & England, Barthel ADL index) • Quality of life (Euroquol, PDQ-39) • Mood (GDS-15)

  6. Methods 3: carers and controls Carers • Each patient was asked to nominate a carer • Regular assessment of the carer’s own QoL, mood and carer burden (as well as proxy assessment of the patient’s QoL and disability) Controls • Matched for general practice, age and sex • Undergo the same assessments as the patients

  7. Methods 4: follow-up All patients were invited to undergo long-term follow-up: • Notes based • Survival tagging • Yearly assessment (at home if reqd) • Interim assessments as required At each contact, the diagnosis is reviewed Discuss issue of PM / brain donation if appropriate Carers and controls also undergo annual follow-up

  8. Patient Results (as of 31/3/13, all 3 yrs FU, median 5 yrs FU) • Baseline characteristics • Survival vs controls • Disease progression vs controls • institutionalisation • dementia • dead or dependent • motor function, quality of life, mental health • Motor complications • Predictors of survival and independent survival in PD

  9. Study Flow chart: latest diagnosis 377 patients 266 controls Withdrew 4 (1.5%) Parkinsonian 2 No consent 2 No consent 16 (4%) 361 pts Parkinson’s disease 203 (56%) Dementia with lewy bodies 43 (12%) Parkinson’s plus 43 (12%) Vascular park 39 (11%) Non-eligible 33 (9%) 262 controls Lost to follow-up n=3

  10. Baseline characteristics

  11. Baseline characteristics

  12. Patient survival by diagnosis PD vs control adjusted HR 2.0 (95% CI 1.3, 3.1)

  13. PD patient survival by age

  14. Institutionalisation by diagnosis

  15. Dementia in PD vs controls PD vs control adjusted HR 6.4 (95% CI 3.1, 13.5)

  16. Death or dependency by diagnosis At 3 yrs: PD vs control adjusted OR = 2.3 (95% CI 1.2, 4.4)

  17. Motor function in PD survivors vs controls Slight worsening over 3 yrs but no different from controls

  18. GDS-15 in PD survivors vs controls Greater deterioration in PD patients vs controls over 3 yrs

  19. MMSE in PD survivors vs controls Greater deterioration in PD patients vs controls over 3 yrs

  20. EQ-5D in PD survivors vs controls

  21. PDQ-39 in PD survivors

  22. Motor complications Motor fluctuations Dyskinesias

  23. Predictors of poor outcomes in PD patients • Greater likelihood of death • older age, ever smoked, no tremor, [Rx in 1st yr ?] • NOT gender, Depcat, living alone, vascular disease, baseline GDS/motor UPDRS/MMSE/H-Y • Greater likelihood of death or dependency at 3 yrs • baseline disability (S&E) or UPDRS • NOT age, gender, Depcat, living alone, smoking, vascular disease, tremor, baseline GDS/MMSE/H-Y • Greater likelihood of dementia • older age, baseline cognitive function, lack of tremor

  24. Carers in the PINE study: Aims • describe the impact (burden) of caring for someone with Parkinson’s over time • identify factors (patient and carer) that predict carerprognosis

  25. Annual carer assessments Update on any health problems Current medication Employment status/hours per week Any care/help given to patient (hours per day) and for how long Carer’s quality of life and health state (Euroquol-5D & VAS) Mood (GDS15) Impact of caring (Crossroads ABC scale)

  26. Baseline carer characteristics 1

  27. Change in time spent caring

  28. EQ5D Utility score over time

  29. EQ5D VAS over time

  30. GDS15 over time

  31. CROSSROADS ABC SCALE Measures carer strain/burden “Living with or caring for someone with a condition like Parkinson’s may cause stress or disruption to your life” 13 items

  32. Carer burden-”not at all” at 3 years

  33. Predictors of burden at baseline

  34. Carer burden over time

  35. Benefits to people with PD? Better understanding of prognosis → better treatment of patients and carers Higher level of death and dependency than previously thought esp atypical park and older onset PD despite best medical Rx Slight decline in non-motor aspects of disease over first 3yrs Carer outcomes relatively stable over 3 yrs Need for allied health input (?) and care (resources) Maximise QoL early in elderly

  36. Future plans for PINE study • Further follow-up of cohort (funded to Feb 2016) • Further analysis • Systematic reviews of prognosis • Prognostic modelling • Importance of co-morbidity • Carer/proxy outcomes • Collaborative data pooling project

  37. Research Team Doctors • Carl Counsell (PI), Angus Macleod, Kate Taylor, David McGhee Research nurses • Clare Harris, Hazel Forbes, Anne Hayman, Joanne Gordon Secretary • Pam Rebecca, Susan Kilpatrick, Aileen Sylvester Information technology • Katie Wilde, David Dawson, Alasdair McDougal, Val Angus Statistician • Shona Fielding, Neil Scott Co-investigators • Amanda Lee

  38. Thank you to our funders Parkinson’s UK CSO NIHR RS Macdonald Trust BMA Doris Hillier BUPA Foundation NHS Grampian Endowments SPRING/local Park UK University of Aberdeen

  39. Any questions?

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