Satisfaction with Care in Late Stage Parkinson’s Disease

Table 3

Univariate associations with informal caregivers’ satisfaction with support ().

	Satisfied, (59%)	Not satisfied, (41%)	value	Missing (n)
Patient demographics and clinical data
Patient gender, n (%)			0.839	—
Men	28 (58%)	20 (42%)
Women	17 (61%)	11 (39%)
Patient age, median (q1–q3)	80 (76–85)	75 (71–80)	0.009	—
Patient dwelling place, n (%)			0.054	—
Home	25 (51%)	24 (49%)
Nursing home	20 (74%)	7 (26%)
HY stage, n (%)			0.004	—
IV	27 (48%)	29 (52%)
V	18 (90%)	2 (10%)
Patient has professional home health care in home/nursing home, n (%)			0.251	—
Yes	37 (63%)	22 (37%)
No	8 (47%)	9 (53%)
Professional health-care contact
MDS and/or PD-nurse (past year), n (%)			0.086	—
Yes	23 (51%)	22 (49%)
No	22 (71%)	9 (29%)
PT and/or OT and/or SLT (past 3 months), n (%)			0.828	—
Yes	20 (61%)	13 (39%)		—
No	25 (58%)	18 (42%)		—
Patient independence in ADL (Katz ADL index), median (q1–q3)	2 (1–5)	1.5 (0.75–4)	0.449	1/1
Dependent (severe functional impairment; ≤2), n (%)	23 (56%)	18 (44%)	0.512
Patient clinical assessments
Motor function (UPDRS III), median (q1–q3)	41 (33–57)	33 (26–42)	0.015	—
Nonmotor symptoms (NMSS), median (q1–q3)	100 (49–138)	105 (61–139)	0.831	2/-
Cognitive function (MMSE), median (q1–q3)	21 (18–25)	22 (19–26)	0.223	4/-
Depressive symptoms (GDS–30), median (q1–q3)	11 (8–15)	12 (8–19)	0.328	6/1
Depression (GDS ≥ 10), n (%)	25 (56%)	20 (44%)	0.825
Patient health and quality of life related assessments
Generic health status (EQ–5D), median (q1–q3)	0.19 (0.08–0.52)	0.39 (0.07–0.62)	0.118	3/1
VAS, median (q1–q3)	50 (40–60)	50 (30–60)	0.743	6/2
Individual QoL (SEIQoL), median (q1–q3)	0.57 (0.41–0.75)	0.55 (0.51–0.62)	0.623	15/6
Life satisfaction (LiSat-11), median (q1–q3)
Life as a whole, n (%)			0.589	7/1
Satisfied	17 (55%)	14 (45%)
Not satisfied	15 (52%)	14 (48%)
Patient satisfaction with care, n (%)			0.142	5/1
Satisfied	27 (64%)	15 (36%)
Not satisfied	13 (46%)	15 (54%)
Caregiver quality of life
ACQLI total score, median (q1–q3)	7 (3–12)	13 (7–19)	0.036	2/1

Satisfaction with support (study-specific question), satisfied = informal caregivers 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 = informal caregivers reporting alternative 3, 4, or 5 on the question satisfaction with care. 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 index (score range 0–100, higher = better); LiSat-11, Life Satisfaction Questionnaire (item 1, score range 1–6; dichotomized as not satisfied = 0, satisfied = 1) ACQLI, Alzheimer’s Carer’s Quality of Life Inventory (score range 0–30, higher = worse). 30 missing (primarily due to nonapplicable). HY IV , HY V ; 6 (21%) of the patients living in nursing home; 10 (56%) of the patients living in nursing home. values based on simple logistic regression analyses. Bold values statistically significant at .