Table 1.
Patients' demographic and clinical data (n=107).
| Total cohort | Missing (n) | |
|---|---|---|
| Gender, n (%) | — | |
| Men | 62 (58%) | |
| Women | 45 (42%) | |
| Age (years), median (q1–q3) | 78 (73–84) | — |
| Age at onset (years), median (q1–q3) | 63 (55–71) | — |
| PD duration (years), median (q1–q3) | 15 (11–19) | — |
| Dwelling place, n (%) | — | |
| Home | 67 (63%) | |
| Nursing home | 40 (37%)∗ | |
| HY stage, median (q1–q3) | 4 (4-5) | — |
| HY stage, n (%) | — | |
| IV | 79 (74%) | |
| V | 28 (26%) | |
| Partner, n (%) | — | |
| Yes | 65 (60%) | |
| No | 42 (39%) | |
| Professional home health care in home/nursing home, n (%) | — | |
| Yes | 89 (83%) | |
| No | 18 (17%) | |
| Professional health-care contact | ||
| MDS and/or PD nurse (past year), n (%) | — | |
| Yes | 69 (64%) | |
| No | 38 (36%) | |
| PT and/or OT and/or SLT (past 3 months), n (%) | — | |
| Yes | 51 (48%) | |
| No | 56 (52%) | |
| Independence in ADL (Katz ADL index), median (q1–q3) | 2 (1–4) | 2 |
| Dependent (severe functional impairment; ≤2), n (%) | 59 (56%) | |
| Clinical assessments | ||
| Motor function (UPDRS III), median (q1–q3) | 40 (29–53) | — |
| Nonmotor symptoms (NMSS), median (q1–q3) | 91 (55–128) | 2 |
| Cognitive function (MMSE), median (q1–q3) | 22 (18–27) | 4 |
| Cognitive impairment (proportion ≤ 23), n (%) | 60 (58%) | |
| Depressive symptoms (GDS-30), median (q1–q3) | 11 (8–16) | 7 |
| Depression (GDS ≥ 10), n (%) | 62 (62%) | |
| Health and quality of life related assessments | ||
| Generic health status (EQ-5D), median (q1–q3) | 0.19 (0.02–0.53) | 5 |
| VAS, median (q1–q3) | 50 (30–60) | 9 |
| Individual QoL (SEIQoL-Q), median (q1–q3) | 55 (43–70) | 26 |
| Self-rated health status (NHP), median (q1–q3) | ||
| Emotional reactions | 22 (11–56) | 12 |
| Sleep | 20 (0–60) | 8 |
| Energy | 67 (33–100) | 9 |
| Pain | 38 (13–75) | 11 |
| Physical mobility | 75 (50–88) | 9 |
| Social isolation | 20 (0–40) | 9 |
| NHP index of distress 0–100 | 33 (17–54) | 12 |
| Life satisfaction (LiSat-11), median (q1–q3) | ||
| Life as a whole high/low, n (%) | 22 (23%)/74 (77%) | 11 |
| Life as a whole | 4 (3-4) | 11 |
| Vocational situation | 3 (2–4) | 14 |
| Financial situation | 5 (4-5) | 12 |
| Leisure | 3 (2–4) | 12 |
| Contacts with friends/acquaintances | 4 (3–5) | 12 |
| Sexual life | 1 (1–3) | 12 |
| Self-care management | 3 (2-3) | 12 |
| Family life | 4 (3–5) | 12 |
| Partner relationship | 4 (1–5) | 14 |
| Somatic health | 3 (2–4) | 12 |
| Psychological health | 4 (3–5) | 12 |
| Satisfaction with care, n (%) | 8 | |
| Satisfied | 58 (59%) | |
| Not satisfied | 41 (41%) | |
q1–q3, first and third quartiles; HY, Hoehn and Yahr Staging Scale (score range I–V, higher = worse); MDS, movement disorder specialist contact during the past year; PD-nurse, Parkinson nurse contact during the past year; physiotherapist/occupational therapist/speech and language therapist, contact during the past three months; Katz ADL, Katz index of independence in activities of daily living (score range 0–6, higher = better); UPDRS, Unified PD Rating Scale, part III = motor examination (score range 0–108, higher = worse); NMSS, Nonmotor Symptoms Scale (0–360, higher = worse); MMSE, Mini-Mental State Examination (score range 0–30, higher = better); GDS-30, Geriatric Depression Scale (score range 0––30, higher = worse), depression = scores ≥ 10. EQ-5D-3L, EuroQol 5 Dimensions Index (score range 0-1, higher = better), VAS, visual analogue scale (score range 0–100, higher = better); SEIQoL-Q, Schedule for the Evaluation of Individual Quality of Life (score range 0–100, higher = better); NHP, the Nottingham Health Profile (score range 0–100 in each section, higher = worse); LiSat-11, Life Satisfaction Questionnaire (each item score range 1–6, higher = better); satisfaction with care (study-specific question), satisfied = patients reporting alternative 1 or 2 on the question satisfaction with care (score range 1–5, higher = worse; 1 = very satisfied, 2 = satisfied, 3 = neutral, 4 = unsatisfied, 5 = very unsatisfied), not satisfied = patients reporting alternative 3, 4 or 5 on the question satisfaction with care. ∗in HY IV 23 (29%) lived in nursing home, in HY V 17 (61%) lived in nursing home.