Satisfaction with Care in Late Stage Parkinson’s Disease

Table 1

Patients’ demographic and clinical data ().

	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.