Plain English Summary
Background
Objective
Methods
Care of late-stage parkinsonism (CLaSP) study
Participants
Assessments
Domain | Assessment | Notes |
---|---|---|
Demographic | Gender | |
Age | ||
Years of education | ||
Marital Status | ||
Clinical – General | Diagnoses | Includes year of onset of Parkinsonism |
Medication | Levodopa Equivalent Daily Doses (LEDD) were calculated from reported medication [59] | |
Clinical Measures | Hoehn and Yahr Stage [36] | Higher stage indicates more advanced Parkinson’s |
UPDRS [60] | Part-I mentation, behaviour and mood; Part-II ADLs; Part-III motor examination; and Part-IV complications of therapy. Higher scores indicate more severe Parkinson’s | |
MMSE [61] | Lower scores indicate greater cognitive impairment | |
Non-Motor Symptom Scale (NMSS) [62] | Higher scores indicate greater burden of non-motor symptoms comprising severity and frequency | |
Care Measures | A resource utilisation questionnaire [63] | Completed by the person with PD and/or their caregiver. It covers multidisciplinary primary and secondary healthcare use as well as social care (professional and informal homecare and other services) |
Schwab & England scale [64] | To assess functional dependence. Range from 0–100% where higher scores indicate greater independence with daily functioning | |
Zarit Burden Interview [65] | To assess impact on caregivers: higher scores indicate greater burden | |
Self-rated Health | EuroQoL (EQ-5D-3L) [27] | This assesses 5-dimensions each with 3 response levels: Mobility- No problems in walking about; some problems walking about; confined to bed Self-care- No problems with self-care; some problems washing or dressing myself; unable to wash or dress myself Usual Activities (e.g. work, study, housework, family or leisure activities): no problems with performing my usual activities; some problems with performing my usual activities; unable to perform my usual activities Pain/discomfort- no pain or discomfort; moderate pain or discomfort; extreme pain or discomfort Anxiety/depression- not anxious or depressed; moderately anxious or depressed; extremely anxious or depressed It also uses a Visual Analogue Scale (VAS) to assess overall perceived health status between the limits of 0 (worst imaginable health status) and 100 (best imaginable health status) |
Analysis
Results
Sample
Variable | N (missing) | Mean (sd) | Median (IQR) |
---|---|---|---|
Age (years) | 277 (0) | 77.98 (6.94) | 78 (74–83) |
Disease duration (years) | 272 (5) | 16.32 (7.99) | 15 (10–21) |
UPDRS: | |||
Part-I Mentation, Behaviour and Mood | 273 (4) | 7.21 (3.03) | 7 (5–9) |
Part-II Activities of Daily Living | 266 (11) | 29.12 (7.39) | 29 (24–34) |
Part-III Motor Examination | 258 (19) | 50.84 (15.76) | 50 (40–61) |
Part-IV Complications of Therapy | 269 (8) | 5.02 (3.39) | 4 (2–7) |
Schwab & England | 277 (0) | (Ordinal) | 30 (20–40) |
Mini Mental State Examination (MMSE) | 255 (22) | 18.82 (5.19) | 20 (16–22) |
NMSS Total | 229 (48) | 126.25 (51.65) | 127 (86–161) |
NMSS Domains | |||
Cardiovascular | 259 (18) | 3.88 (5.44) | 2 (0–6) |
Sleep & Fatigue | 257 (20) | 14.83 (10.23) | 13 (6–21) |
Mood & Cognition | 261 (16) | 23.26 (17.64) | 20 (9–34) |
Perception | 258 (19) | 7.62 (8.79) | 4 (0–12) |
Attention & Memory | 258 (19) | 20.10 (11.93) | 21 (10–30) |
Gastrointestinal | 260 (17) | 12.60 (8.54) | 12 (6–18) |
Urinary | 256 (21) | 19.44 (13.28) | 18 (8–36) |
Sexual Function | 244 (33) | 11.32 (10.20) | 12 (0–24) |
Miscellaneous | 256 (21) | 12.5 (10.09) | 12 (4–18) |
Medication (LEDD) | 272 (5) | 830.53 (488.72) | 752 (495–1051) |
Zarit Burden Score | 200 (77) | 33.62 (15.66) | 34 (20–46) |
Professional carea (hours per week) | 132 (57) | 7.77 (22.87) | 0 (0–7) |
Informal carea in last 30days (hours) | 120 (69) | 240.54 (204.14) | 180 (81–360) |
Variable | Total n (missing) | N (%) | |
---|---|---|---|
Healthcare Utilisation for PD in last 3 months | |||
Inpatient Hospital admission | 205 (72) | 62 (30.24) | |
Primary Care Physician Consultation | 199 (78) | 113 (56.78) | |
Neurologist/Geriatrician Consultation | 200 (77) | 92 (46.00) | |
PD Nurse Consultation | 212 (65) | 26 (12.26) | |
Therapyb Consultation | 206 (71) | 150 (72.82) | |
Gender – Male | 277 (0) | 166 (59.93) | |
Marital Status | 275 (2) | ||
Single | 15 (5.42) | ||
Married | 180 (64.98) | ||
Divorced | 11 (3.97) | ||
Widowed | 62 (22.38) | ||
Living Apart from Spouse | 6 (2.17) | ||
Living in Stable Partnership without Marriage | 1 (0.36) | ||
Dementia Medicationc | 273 (4) | 115 (42.12) | |
Care Setting | 236 (41) | ||
Nursing Home | 88 (37.29) | ||
Own Home with Carer | 105 (44.49) | ||
Own Home without Carer | 43 (18.22) | ||
Carer Relationship | 215 (62) | ||
No participating informal carer | 46 (21.40) | ||
Spouse or Life Partner | 116 (53.95) | ||
Daughter or Son | 44 (20.47) | ||
Other informal carer | 9 (4.19) |
Comparison of completers and non-completers
Health status outcomes
Predictors of self-rated health
Variable | β | 95% confidence interval | Standard Error | p | |
---|---|---|---|---|---|
Outcome: EQ-5D Index (n = 172) | |||||
UPDRS Part-I Mentation, Behaviour and Mood (z) | 0.03 | − 0.03 | 0.09 | 0.03 | 0.33 |
UPDRS Part-II Activities of Daily Living (z) | − 0.10 | − 0.16 | − 0.03 | 0.03 | 0.003 |
UPDRS Part-III Motor Examination (z) | − 0.10 | − 0.15 | − 0.04 | 0.03 | 0.001 |
UPDRS Part-IV (z) | 0.02 | − 0.02 | 0.06 | 0.02 | 0.39 |
NMSS Mood domain (%) | − 0.004 | − 0.01 | − 0.003 | < 0.01 | < 0.001 |
NMSS Perception domain (%) | − 0.002 | − 0.004 | − 0.0001 | < 0.01 | 0.04 |
NMSS GI domain (%) | 0.002 | 0.001 | 0.004 | < 0.01 | 0.01 |
NMSS Sexual function domain (%) | − 0.001 | − 0.002 | − 0.0005 | < 0.01 | 0.003 |
PD Nurse Consultationa | 0.14 | 0.01 | 0.27 | 0.06 | 0.03 |
Constant | 0.30 | 0.20 | 0.40 | 0.05 | 0.00 |
Outcome: EQ Visual Analogue Scale (n = 123) | |||||
Gender: Male | − 0.08 | − 6.93 | 6.78 | 3.46 | 0.98 |
UPDRS Part-I Mentation, Behaviour and Mood (z) | − 4.39 | − 9.30 | 0.52 | 2.48 | 0.08 |
UPDRS Part-II Activities of Daily Living (z) | 1.89 | − 3.10 | 6.87 | 2.51 | 0.46 |
UPDRS Part-III Motor Examination (z) | − 5.19 | − 9.87 | − 0.51 | 2.36 | 0.03 |
NMSS Urinary domain (%) | 0.07 | − 0.02 | 0.16 | 0.05 | 0.15 |
NMSS Miscellaneous domain (%) | − 0.19 | − 0.36 | − 0.02 | 0.09 | 0.03 |
Zarit Carer Burden Score (z) | − 3.01 | − 6.39 | 0.36 | 1.70 | 0.08 |
PD Nurse Consultationa | 7.11 | − 2.77 | 16.99 | 4.99 | 0.16 |
Parkinson’s Medication (LEDD) | 0.01 | 0.001 | 0.02 | < 0.01 | 0.02 |
Constant | 40.71 | 32.17 | 49.25 | 4.31 | < 0.001 |
Sensitivity analysis
Discussion
Summary of findings
Context of previous research
Present study | European general population [66] | PD sample [13] | Dementia sample [67] | Advanced PD sample [68] | Advanced PD sample [69] | |
---|---|---|---|---|---|---|
Countries | UK, Germany, Sweden, the Netherlands, Portugal, France | France, Germany, Italy, Spain, UK | Germany | UK | US, Germany, New Zealand | 16 countriesa |
Key sample information | n = 277 | n = 21,425 | n = 75 | N = 1547 | N = 37 | n = 354 |
Late stage: 90% Hoehn & Yahr Stage IV-V | Population-weighted | Predominantly mild-moderate disease (Hoehn & Yahr Stage I-III) 68% had MCI, none had dementia | Range of dementia pathologies, but 55% Alzheimer’s disease. Small proportion (2.8%) with PD dementia included | Participants were experiencing motor fluctuations despite optimized medical therapy | Participants were experiencing motor fluctuations despite optimized medical therapy | |
Cognitive impairment: MMSE < 24 or diagnosis of MCI or dementia | MMSE < 24 excluded | |||||
EQ-VAS | Mean 44.386 (SD 19.393) | Mean 78.3 (SD 20.4) | Mean 65.7 (SD 17.3) | Mean 71.9 (SD 18.6) | Mean 63.9 (SD 14.6) | Mean 50.2 (SD 21.0) |
Median 50 (IQR 30–55) | ||||||
EQ-5D-3L Dimension Responsesb | ||||||
Mobility | No problems 4% | No problems 87% | No problem 0% | No problems 58% | Not reported | |
Problems 96% | Problems 12% | Problems 100% | Problems 42% | |||
Self-Care | No problems 3% | No problems 96% | No problems 72% | No problems 83% | ||
Problems 97% | Problems 4% | Problems 28% | Problems 17% | |||
Usual Activities | No problems 3% | No problems 89% | No problems 62% | No problems 66% | ||
Problems 98% | Problems 11% | Problems 38% | Problems 34% | |||
Pain/Discomfort | No problems 23% | No problems 72% | No problems 27% | No problems 60% | ||
Problems 77% | Problems 28% | Problems 73% | Problems 40% | |||
Anxiety/Depression | No problems 24% | No problems 87% | No problems 72% | No problems 66% | ||
Problems 76% | Problems 13% | Problems 28% | Problems 34% |