Caregivers of Patients with Heart Failure: Burden and the Determinants of Health-Related Quality of Life

Figures & data

Figure 1 Study participants flow chart.

Table 1 Caregiver Demographics

	Overall (N=361)	By NYHA Class^#
		NYHA I (n=41)	NYHA II (n=212)	NYHA III–IV (n=108)	P-value
Age (years), mean (SD)	58.8 (14.4)	59.1 (13.0)	60.8 (13.5)	54.6 (15.7)	0.0029
Female gender, n (%)	264 (73.1)	29 (70.7)	159 (75.0)	76 (70.4)	0.6326
Marital status, n (%)	N=356	n=40	n=208	n=108	0.503
Married	292 (82.0)	35 (87.5)	170 (81.7)	87 (80.6)
Single	44 (12.4)	4 (10.0)	24 (11.5)	16 (14.8)
Divorced	11 (3.1)	1 (2.5)	9 (4.3)	1 (0.9)
Widowed	9 (2.5)	0	5 (2.4)	4 (3.7)
Relationship to the patient, n (%)	N=359	n=41	n=210	n=108	0.0015
Husband/wife/partner	209 (58.2)	28 (68.3)	134 (63.8)	47 (43.5)
Son/daughter	84 (23.4)	6 (14.6)	43 (20.5)	35 (32.4)
Professional caregiver	16 (4.5)	3 (7.3)	5 (2.4)	8 (7.4)
Grandson/granddaughter	15 (4.2)	2 (4.9)	4 (1.9)	9 (8.3)
Friend/neighbour	10 (2.8)	0	5 (2.4)	5 (4.6)
Brother/sister	6 (1.7)	1 (2.4)	3 (1.4)	2 (1.9)
Other relative	19 (5.3)	1 (2.4)	16 (7.6)	2 (1.9)
Employment status, n (%)					0.2052
Retired	154 (42.7)	20 (48.8)	98 (46.2)	36 (33.3)
Working full time	81 (22.4)	9 (22.0)	39 (18.4)	33 (30.6)
Homemaker	54 (15.0)	5 (12.2)	37 (17.5)	12 (11.1)
Working part time	44 (12.2)	4 (9.8)	21 (9.9)	19 (17.6)
Unemployed	23 (6.4)	3 (7.3)	14 (6.6)	6 (5.56)
Student	4 (1.1)	0	2 (0.9)	2 (1.9)
On long-term sick leave	1 (0.3)	0	1 (0.5)	0
Is patient’s main caregiver, n (%)	N=338	n=38	n=199	n=101	0.0036
Yes	317 (93.8)	36 (94.7)	193 (97.0)	88 (87.1)

Note: ^#NYHA class is based on PRF data.

Abbreviations: NYHA, New York Heart Association; PRF, patient record form; SD, standard deviation.

Figure 2 Caregivers reported: (A) Top 10 caregiving activities. (B) Top 10 most troublesome/inconvenient caregiving activities.

Figure 3 Caregivers reported scores to indicate: (A) Disruption in caregivers’ everyday life. (B) Impact on caregivers’ own health.

Figure 4 Caregivers reported health problems experienced or exacerbated due to HF caregiving.

Table 2 Health-Related Quality of Life of Caregivers of Patients with HF

Scale	Overall (N=361)	NYHA I (n=41)	NYHA II (n=212)	NYHA III–IV (n=108)	P-value
FAMQOL scale^#
Overall score	N=342	n=38	n=204	n=100	0.0069
Mean	55.3 (11.4)	58.1 (13.8)	56.3 (10.8)	52.2 (11.0)
Physical score	N=351	n=40	n=206	n=105	0.0007
Mean	14.6 (3.2)	15.6 (3.1)	14.8 (3.2)	13.7 (3.1)
Emotional score	N=354	n=40	n=209	n=105	0.012
Mean	13.4 (4.1)	15.0 (4.6)	13.4 (4.0)	12.8 (4.1)
Social score	N=349	n=38	n=209	n=102	0.0003
Mean	14.7 (3.7)	15.0 (3.9)	15.2 (3.6)	13.5 (3.5)
EQ-5D-5L scale
Utility score*	N=360	n=40	n=212	n=108	0.8578
Mean (SD)	0.90 (0.12)	0.89 (0.13)	0.90 (0.12)	0.89 (0.12)
VAS score**	N=359	n=40	n=211	n=108	0.5058
Mean	76.6 (14.7)	79.8 (13.7)	76.4 (14.1)	75.9 (16.0)

Notes: *EQ-5D-5L: Scores range from less than 0 (where 0 = health state equivalent to death; negative values valued as worse than death) to 1 (perfect health). **EQ-5D VAS: Scale of 0–100, where 0 = worst imaginable health and 100 = best imaginable health. ^#Family Caregiver-Specific Quality of Life Scale: Overall: Possible range of 16–80, with 80 representing higher family caregiver-specific QoL; Physical, Emotional, Social: Possible range of 4–20, with 20 representing higher well-being.

Abbreviations: NYHA, New York Heart Association; PRF, patient record form; SD, standard deviation.

Table 3 Impact of HF Caregiving on Employment and Financial Burden

	Overall (N=361)	NYHA I (n=41)	NYHA II (n=212)	NYHA III–IV (n=108)	P-value
Impact on employment
Impact on work as a result of caregiving activities (12 months), n (%)
Reduced the number of work hours/days	23 (6.4)	3 (7.3)	13 (6.1)	7 (6.5)	0.9589
Changed role/position in current job	4 (1.1)	1 (2.4)	2 (0.9)	1 (0.9)	0.688
Changed the job	1 (0.3)	0	0	1 (0.9)	0.309
None of the above	276 (76.5)	32 (78.1)	162 (76.4)	82 (75.9)	0.9633
Not stated	59 (16.3)	6 (14.6)	35 (16.5)	18 (16.7)	0.9512
Absence from work, n (%)	N=125	n=13	n=60	n=52
Paid days off due to caregiving responsibilities	92 (73.6)	(69.2)	43 (71.7)	40 (76.9)	0.7639
Unpaid days off due to caregiving responsibilities	76 (60.8)	8 (61.5)	34 (56.7)	34 (65.4)	0.6403
I have not worked in the last 3 months	9 (7.2)	1 (7.7)	4 (6.7)	4 (7.7)	0.9757
Not stated	14 (11.2)	3 (23.1)	8 (13.3)	3 (5.8)	0.1604
Had a drop in income, n (%)	N=25	n=2	n=15	n=8	0.5494
Yes	20 (80.0)	2 (100)	11 (73.3)	7 (87.5)
No	5 (20.0)	0	4 (26.7)	1 (12.5)
Financial burden
Receive financial assistance from the healthcare system or social services, n (%)	N=281	n=28	n=169	n=84	0.4731
Yes	44 (15.7)	4 (14.3)	30 (17.8)	10 (11.9)
No	237 (84.3)	24 (85.7)	139 (82.3)	74 (88.1)
Responsible for paying for patient’s HF medication, n (%)	N=348	n=40	n=206	n=102	0.43
No	291 (83.6)	37 (92.5)	167 (81.1)	87 (85.3)
Prescription medicine	16 (4.6)	1 (2.5)	10 (4.9)	5 (4.9)
Responsible for paying for patient’s HF-related rehabilitation costs, n (%)	N=349	n=40	n=207	n=102	0.6461
No	307 (88.0)	38 (95.0)	180 (87.0)	89 (87.3)
Yes, some of the cost	2 (0.6)	0	1 (0.5)	1 (1.0)
Responsible for paying for patient’s HF-related hospitalizations, n (%)	N=350	n=40	n=207	n=103	0.4957
No	303 (86.6)	37 (92.5)	175 (84.5)	91 (88.4)
Yes, all of the cost	1 (0.3)	0	0	1 (1.0)
Yes, some of the cost	1 (0.3)	0	1 (0.5)	0
Responsible for paying HF-related travel costs for self and/or the patient, n (%)	N=349	n=40	n=207	n=102	0.6884
No	306 (87.7)	35 (87.5)	183 (88.4)	88 (86.3)
Yes, all of the cost	35 (10.0)	4 (10.0)	18 (8.7)	13 (12.8)
Yes, some of the cost	8 (2.3)	1 (2.5)	6 (2.9)	1 (1.0)

Abbreviations: HF, heart failure; NYHA, New York Heart Association.