Experiences of Heart Failure and the Treatment Journey: A Mixed-Methods Study Among Patients with Heart Failure in Sweden

Figures & data

Table 1 Self-Reported Demography, Heart Failure Subgroup, Medical Treatments, Comorbidities, and NYHA Class Reported by Survey Respondents

	NYHA^a	NYHA	Total
	Class II	Class III/IV
	n=49	n=52	N=101
Demographics
Age: Mean (SD)	68.7 (12.0)	71.4 (10.8)	70.1 (11.4)
Female, n (%)	24 (49)	33 (63)	57 (56)
Heart failure subgroup
HFpEF, n (%)	3 (6)	5 (10)	8 (8)
HFrEF, n (%)	15 (31)	10 (19)	25 (25)
Do not know, n (%)	31 (63)	37 (71)	68 (67)
Comorbidities
Diabetes, n (%)	6 (12)	9 (17)	15 (15)
Chronic kidney disease, n (%)	3 (6)	1 (2)	4 (4)
Anemia or iron deficiency, n (%)	2 (4)	1 (2)	3 (3)
Chronic obstructive pulmonary disease, n (%)	2 (4)	7 (13)	9 (9)
Hypertension, n (%)	22 (45)	21 (40)	43 (43)
Previous myocardial infarction, n (%)	10 (20)	11 (21)	21 (21)
None of the above, n (%)	16 (33)	14 (27)	30 (30)
Current treatments
Diuretics, n (%)	23 (47)	30 (58)	53 (52)
ACEI, n (%)	17 (35)	19 (36)	36 (36)
ARB, n (%)	17 (35)	13 (25)	30 (30)
Beta-blockers, n (%)	42 (86)	41 (79)	83 (82)
MRA, n (%)	24 (49)	24 (46)	48 (48)
ARNI, n (%)	12 (24)	10 (19)	22 (22)
SGLT2i, n (%)	3 (6)	2 (4)	5 (5)

Notes: ^aPatients were classified according to NYHA class via their responses to the following screener item: “Please indicate how much you have been limited by heart failure (shortness of breath, fatigue, palpitations, or chest pain) over the past 2 weeks”. Response options: “Not limited at all: ordinary physical activity does not cause symptoms of HF” (non-eligible); “Slightly limited: comfortable at rest, but ordinary physical activity (eg running, climbing stairs) results in symptoms of HF” (NYHA II); “Quite limited: comfortable at rest, but less than ordinary activity (eg walking uphill, dressing and undressing) causes symptoms of HF” (NYHA III); and, “Extremely limited: symptoms of HF even at rest” (NYHA IV).

Abbreviations: ACEI, angiotensin converting enzyme inhibitors; ARB, angiotensin receptor blockers; ARNI, angiotensin receptor-neprilysin inhibitors; HFpEF, heart failure with preserved ejection fraction; HF, heart failure; HFrEF, HF with reduced ejection fraction; MRA, mineralocorticoid receptor antagonists; NYHA, New York Heart Association; SGLT2i, sodium-glucose cotransporter-2 inhibitors; SD, standard deviation.

Table 2 Frequencies of Current, Main Heart Failure Symptoms and Severity of Shortness of Breath (Dyspnea) Experienced by Survey Respondents by Self-Reported Disease Stage

	NYHA	NYHA	Total
	Class II	Class III/IV
	n=49	n=52	N=101
Heart failure symptoms
Fatigue, n (%)	38 (78)	49 (94)	87 (86)
Shortness of breath, n (%)	26 (53)	40 (77)	66 (65)
Swollen ankles and legs, n (%)	18 (37)	31 (60)	49 (49)
Palpitations, n (%)	20 (41)	22 (42)	42 (42)
Chest pain, n (%)	8 (16)	11 (21)	18 (18)
Severity of shortness of breath
How much shortness of breath have you experienced during the last 4 weeks?
None – (I have almost not experienced any), n (%)	3 (6)	0 (0)	3 (3)
Very little – (eg when climbing stairs), n (%)	27 (55)	4 (8)	31 (31)
Moderate – (eg when walking on even ground), n (%)	17 (35)	25 (48)	42 (42)
Severe – (eg when showering/dressing), n (%)	2 (4)	22 (42)	24 (24)
Very severe – (also at rest), n (%)	0 (0)	1 (2)	1 (1)

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

Table 3 Survey Respondents’ Adopted Lifestyle Changes to Adapt to Heart Failure by Self-Reported Disease Stage and Age

	Disease Stage		Age Group		Total
	NYHA	NYHA	<70	>70
	Class II	Class III/IV	years	years
	n=49	n=52	n=41	n=60	N=101
Lifestyle changes
Control weight, n (%)	31 (63)	33 (63)	32 (78)	32 (53)	64 (63)
Increase physical exercise, n (%)	29 (59)	25 (48)	27 (66)	27 (45)	54 (53)
Change diet, n (%)	13 (27)	11 (21)	17 (41)	7 (12)	24 (24)
Reduce alcohol consumption, n (%)	7 (14)	8 (15)	10 (24)	5 (8)	15 (15)
Stop smoking, n (%)	8 (16)	6 (12)	8 (19)	6 (10)	14 (14)
Others, n (%)	10 (20)	15 (29)	15 (37)	10 (17)	25 (25)
Do not need to change anything, n (%)	6 (12)	7 (13)	1 (2)	12 (20)	13 (13)
Frequency of checking weight
How often do you check your body weight?
Never, n (%)	2 (4)	2 (4)	3 (7)	1 (2)	4 (4)
Once per month of less, n (%)	12 (24)	15 (29)	13 (32)	14 (23)	27 (27)
About 2‒3 times per month, n (%)	6 (12)	6 (11)	3 (7)	9 (15)	12 (12)
About once per week, n (%)	12 (24)	8 (15)	8 (19)	12 (20)	20 (20)
At least 2‒3 times per week, n (%)	17 (35)	21 (40)	14 (34)	24 (40)	38 (38)

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

Figure 1 RAND-36 mean subscale scores of the study sample compared to the Swedish normal population: survey results for HRQoL (assessed by the RAND-36 subscales) are displayed by NYHA class and compared to the Swedish general population.

Note: For all subscales, a higher score indicates better patient status.

Abbreviation: NYHA, New York Heart Association.

Table 4 Frequencies of Heart Failure Impacts on Patients’ Lives as Reported in Interviews

Impacts Mentioned	Number of Patients (n=35)	% of patients
Fatigue	28	80
Changes in diet	18	51
On walking	12	34
On sports/physical fitness/physical exertion	11	31
On relationships with friends and family	10	28
Depression	7	20
On travel	6	17
On work	5	14
On carrying or lift things	4	11
On cleaning	4	11
Heaviness/overwhelm	4	11
Anger/irritation	4	11
On using stairs	3	8
Difficulty sleeping	3	8
On intimate relationships	3	8
Heat/cold sensitivity	2	6
Anxiety/worry	2	6
Lack of concentration	2	6
Need for frequent naps	1	3
Cannot use sauna anymore	1	3