Caregiver burden, productivity loss, and indirect costs associated with caring for patients with poststroke spasticity

Figures & data

Table 1 Descriptive statistics of caregivers of stroke survivors with spasticity

Characteristics	Caregivers (N=153)
Mean (SD) age, years	51.6 (12.6)
Sex, n (%)
Women	108 (70.6)
Race/ethnicity, n (%)
White/Caucasian	118 (77.1)
Black/African–American	11 (7.2)
Asian/Pacific Islander	5 (3.3)
Other	19 (12.4)
Marital status, n (%)
Married/living with partner	102 (66.7)
Employment status, n (%)
Full-time	48 (31.4)
Part-time	15 (9.8)
Self-employed	12 (7.8)
Homemaker	16 (10.5)
Unemployed	15 (9.8)
Disabled	14 (9.2)
Student	3 (2.0)
Retired	30 (19.6)
Education, n (%)
≤ High school diploma	22 (14.4)
Some college, no degree	59 (38.6)
Bachelor’s degree	39 (25.5)
Graduate degree	31 (20.3)
Unknown	2 (1.3)
Total annual household income, n (%)
<$25,000	13 (8.5)
$25,000–$49,999	40 (26.1)
$50,000–$74,999	36 (23.5)
≥$75,000	56 (36.6)
Decline to answer	8 (5.2)
Patient’s relationship to caregiver, n (%)
Spouse/significant other	27 (17.7)
Mother/father	91 (59.5)
Mother-in-law/father-in-law	14 (9.2)
Sister/brother	2 (1.3)
Grandparent	8 (5.2)
Other family member	6 (3.9)
Friend/neighbor	3 (2.0)
Other	2 (1.3)
Symptoms experienced, n (%)
Headache	98 (64.1)
Difficulty falling or staying asleep	96 (62.8)
Nervousness or anxiety	75 (49.0)
Stomach pain	45 (29.4)
Lightheadedness	45 (29.4)
None of the above	21 (13.7)
Mean (SD) health outcomes
PHQ-9	7.4 (6.7)
SF-12v2: MCS	42.4 (12.2)
SF-12v2: PCS	47.7 (10.9)
SF-12v2: health utilities	0.7 (0.1)

Note: Income is reported in 2012 US dollars.

Abbreviations: MCS, mental component summary; PCS, physical component summary; PHQ, patient health questionnaire; SF-12v2, Short Form-12, Version 2; SD, standard deviation.

Table 2 Descriptive statistics of stroke survivors with spasticity

Characteristics	Stroke survivors with spasticity (N=153)
Mean (SD) age, years	75.0 (13.4)
Sex, n (%)
Women	87 (56.9)
Race/ethnicity, n (%)
Other	5 (3.3)
White/Caucasian	133 (86.9)
Black/African–American	11 (7.2)
Asian/Pacific Islander	4 (2.6)
Marital status, n (%)
Married/living with partner	102 (66.7)
Employment status, n (%)
Full-time	7 (4.6)
Part-time	2 (1.2)
Self-employed	1 (0.7)
Homemaker	7 (4.6)
Unemployed	5 (3.3)
Disabled	40 (26.1)
Student	0 (0)
Retired	91 (59.5)
Type of health insurance,a n (%)
Insurance coverage through a current or former	32 (20.9)
employer
Insurance coverage through spouse’s employer	12 (7.8)
Individual/family insurance plans	22 (14.4)
Medicaid (MediCal for California residents)	29 (19.0)
Medicare	116 (75.8)
Veterans administration	8 (5.2)
TRICARE	3 (2.0)
Other	12 (7.8)
Spasticity symptoms experienced, n (%)
Abnormal posture	58 (37.9)
Difficulty sleeping	57 (37.3)
Limitations in activities of daily living (eg, bathing, getting dressed)	108 (70.6)
Limitations in mobility (eg, transfers from bed to chair)	106 (69.3)
Limitations in locomotion (eg, walking, going up/down stairs)	131 (85.6)
Pain	104 (68.0)
Stiffness or limited range of motion in the	124 (81.1)
affected muscles
Other	6 (3.9)
Parts of body affected by spasticity, n (%)
Shoulder	63 (41.2)
Arm	84 (54.9)
Elbow	40 (26.1)
Fingers	61 (39.9)
Wrist	49 (32.0)
Knee	77 (50.3)
Leg	118 (77.1)
Ankle	57 (37.3)
Foot	82 (53.6)
Toes	44 (28.8)
Mean (SD) DAS
Hygiene	1.8 (1.0)
Pain	1.8 (0.9)
Dressing	1.9 (1.0)
Limb posture	2.0 (0.9)

Notes:

a Individual/family insurance plans are purchased directly by the stroke survivor or a family member; TRICARE is the health care program for uniformed service members (ie, active, guard/reserve, retired) and their families.

Abbreviations: DAS, Disability Assessment Scale (score range, 0–12); SD, standard deviation.

Table 3 Caregiver burden and work productivity loss among caregivers of stroke survivors with spasticity

	N	Mean (SD)
Time spent caregiving in a typical week, hours	75	27.4 (29.4)
OCBS: time subscalea	153	46.1 (12.8)
OCBS: difficulty subscalea	153	32.4 (13.5)
BCOSb	153	49.4 (13.1)
WPAI: absenteeismc	71	0.09 (0.15)
WPAI: presenteeismc	71	0.27 (0.26)
WPAI: overall work restrictionc	71	0.32 (0.29)
WPAI: activity limitationc	153	0.40 (0.28)

Notes:

a OCBS is a 15-item instrument that rates different types of caregiving tasks on two dimensions: time spent (1= none, 5= a great amount) and difficulty of task (1= not difficult, 5= extremely difficult). Time and difficulty subscale scores are calculated by summing the 15 items of each subscale (range, 15–75; higher scores indicate greater caregiver burden).

b BCOS is a 15-item instrument that measures life changes as a consequence of caregiving, with each item scored on a 7-point response scale (1= changed for the worst, 7= changed for the best); scores are calculated by summing the 15 items (total score range, 15–105; lower scores indicate greater caregiver burden).

c Only employed caregivers were able to provide data about absenteeism, presenteeism, and overall work restriction. All caregivers provided activity limitation data. To avoid confusion, WPAI variables are expressed in the form of proportions of work time missed (eg, 0.09=9% of the work week was missed due to caregiving responsibilities) as opposed to percent (the latter may cause one to believe that it is the percentage of caregivers experiencing absenteeism/presenteeism, which is inaccurate).

Abbreviations: BCOS, Bakas Caregiving Outcomes Scale; OCBS, Oberst Caregiving Burden Scale; WPAI, Work Productivity and Activity Impairment questionnaire; SD, standard deviation.

Table 4 Average marginal effects of caregiver and patient characteristics on productivity loss (proportion of work hours missed, presenteeism, and proportion of overall work restriction) among employed caregivers

Characteristics	Absenteeism		Presenteeism		Overall work restriction
	Marginal effects (SE)	P-value	Marginal effects (SE)	P-value	Marginal effects (SE)	P-value
Caregiver characteristics
Age	−0.008 (0.002)	<0.0001	−0.004 (0.002)	0.073	−0.01 (0.003)	0.004
Male	0.021 (0.028)	0.458	-0.10 (0.06)	0.134	-0.06 (0.07)	0.321
Income <$25,000a	0.12 (0.05)	0.02	−0.31 (0.12)	0.011	−0.10 (0.13)	0.432
Income $25,000–$49,999a	−0.060 (0.034)	0.041	0.03 (0.07)	0.596	0.007 (0.07)	0.925
Income $50,000–$74,999a	−0.03 (0.039)	0.377	−0.09 (0.07)	0.243	−0.07 (0.07)	0.351
Income not declareda	−0.05 (0.008)	0.482	−0.07 (0.19)	0.706	−0.12 (0.21)	0.650
Part-time	0.056 (0.031)	0.07	0.09 (0.06)	0.163	0.13 (0.07)	0.158
Self-employed	0.03 (0.05)	0.533	0.04 (0.08)	0.679	0.03 (0.10)	0.737
Number of comorbidities	−0.001 (0.005)	0.785	−0.002 (0.02)	0.919	−0.002 (0.02)	0.888
Number of children <18 years of age	0.039 (0.01)	0.006	0.08 (0.05)	0.099	0.12 (0.04)	0.017
Stroke survivor with spasticity characteristics
Age	−0.0004 (0.001)	0.968	0.004 (0.002)	0.145	0.003 (0.002)	0.207
DAS	0.01 (0.007)	0.106	0.02 (0.01)	0.172	0.023 (0.015)	0.140
Lack of supplemental insurance	−0.015 (0.027)	0.672	−0.006 (0.07)	0.925	−0.02 (0.07)	0.779
Lack of nursing home coverage	0.14 (0.04)	<0.0001	0.26 (0.06)	<0.0001	0.32 (0.08)	<0.0001
Had paid caregiver (yes =1/no =0)	0.06 (0.024)	0.06	−0.02 (0.06)	0.754	−0.02 (0.06)	0.762
Had no other caregivers (yes =1/no =0)	0.10 (0.03)	0.015	0.10 (0.09)	0.363	0.17 (0.13)	0.182

Notes:

Marginal effects are predicted proportions calculated at mean values of explanatory variables. Bold values are significant at P<0.05.

a Compared with income ≥$75,000. Income is reported in 2012 US dollars.

Abbreviations: DAS, Disability Assessment Scale (score, 0–12); SE, standard error.

Figure 1 Work productivity relative to disability.

Notes: Predicted proportion of (A) absenteeism, (B) presenteeism, and (C) overall work restriction for 1-unit increase in Disability Assessment Scale scores (with 95% CIs). Abbreviations: PSS, poststroke spasticity; CI, confidence interval.

Figure 2 Monthly caregiver productivity losses.

Note: Monthly per-employed caregiver productivity losses due to caregiving responsibilities (2012 US dollars).