Health-related quality of life and symptom burden of epithelioid hemangioendothelioma patients: a global patient-driven Facebook study in a very rare malignancy

Figures & data

Table 1. Patient characteristics.

Variable	EHE patients N = 115 N (%)	Cluster 1 (low symptomatology) N = 31 (27%) N (%)	Cluster 2 (intermediate) N = 46 (40%) N (%)	Cluster 3 (high) N = 38 (33%) N (%)	p Value
Gender
Women	88 (77)	23 (74)	36 (78)	29 (76)	0.918
Age
Mean (range)	47 ± 15 (17-81)	45 ± 14 (17-69)	48 ± 16 (19-81)	48 ± 15 (22-75)	0.545
Age (diagnosis)
Mean (range)	43 ± 15 (13-77)	38 ± 14 (13-64)	44 ± 16 (15-77)	44 ± 15 (18-72)	0.206
Time since diagnosis
Mean (years, range)	4.5 ± 4.3 (0-21)	6.2 ± 5.1 (0-17)	4.0 ± 4.1 (0-21)	3.8 ± 3.4 (0-12)	0.044
Comorbidities
Mean no. (range)	2.0 ± 1.7 (0-8)	1.4 ± 1.1 (0-4)	1.6 ± 1.2 (0-5)	2.9 ± 2.1 (0-8)	0.000^a,b
Partner
Yes	95 (83)	27 (87)	42 (91)	26 (68)	0.017
Level of education					0.571
Low	12 (10)	4 (13)	4 (9)	4 (11)
Middle	38 (33)	9 (29)	13 (28)	16 (42)
High	54 (47)	13 (42)	25 (54)	16 (42)
Other	11 (10)	5 (16)	4 (9)	2 (5)
Sick leave because of EHE
Yes	7 (6)	–	–	7 (18)	0.000
Current state of disease
No evidence of disease	23 (20)	9 (29)	7 (15)	7 (18)	0.002
Indolent (stable/slowly growing)	70 (61)	20 (65)	31 (67)	19 (50)
Aggressive	8 (7)	–	–	8 (21)
Not sure/unknown	14 (12)	2 (7)	8 (17)	4 (11)

^aLow vs. high.

^bIntermediate vs high.

Table 2. EORTC-QLQ-C30 scores.

Variable	EHE patients N = 115	EORTC norm N = 2185	p Value	Cluster 1 (low) N = 31	Cluster 2 (intermediate) N = 46	Cluster 3 (high) N = 38	p Value
Global health/QoL	74 ± 21	65 ± 22	0.000	92 ± 8	76 ± 18	56 ± 19	0.000^a†,b†, c†
Functioning scales
Physical functioning	86 ± 19	84 ± 19	0.414	98 ± 5	92 ± 12	68 ± 21	0.000^b†,c†
Role functioning	81 ± 28	84 ± 25	0.155	99 ± 4	84 ± 22	61 ± 33	0.000^a#,b†,c*
Emotional functioning	75 ± 23	72 ± 25	0.200	91 ± 13	73 ± 23	64 ± 21	0.000^a,b
Cognitive functioning	82 ± 20	83 ± 22	0.590	94 ± 10	85 ± 18	69 ± 22	0.000^b†,c#
Social functioning	76 ± 30	85 ± 25	0.000	97 ± 12	85 ± 18	47 ± 30	0.000^a*,b†,c†
Summary score	82 ± 16	82 ± 17	0.892	98 ± 3	86 ± 7	64 ± 14	0.000^a,b,c

QoL: quality of life.

^aLow vs. intermediate.

^bLow vs. high.

^cIntermediate vs high.

All scores indicate mean ± standard deviation.

^#Small clinical difference, *medium clinical difference, ^†large clinical difference [16].

Figure 1. EORTC-QLQ-C30 functioning scores per symptom cluster and normative population. Bar charts showing EORTC-QLQ-C30 global QoL and functioning scores for (a) the low symptomatic cluster and its normative population, (b) for the intermediate symptom burden cluster and its normative population and (c) for the highly symptomatic cluster and its normative population. *p < 0.05, **p < 0.01, ***p < 0.001, ^#normative population for that particular symptom cluster.

Figure 2. EORTC-QLQ-C30 symptom scores. Spider plot showing EORTC-QLQ-C30 symptom scores of the low, intermediate and highly symptomatic cluster on a 0-100 scale, with higher scores indicating more complaints.

Table 3. Psychological distress.

Variable	EHE patients N = 115	Cluster 1 (low) N = 31	Cluster 2 (intermediate) N = 46	Cluster 3 (high) N = 38	p Value
HADS
Depression score	5.0 ± 3.6	2.6 ± 2.3	4.7 ± 3.3	7.3 ± 3.3	0.000^a†,b†,c†
Anxiety score	5.6 ± 3.9	3.0 ± 2.4	5.6 ± 3.8	7.6 ± 3.3	0.000^a†,b†,c†
Total score	10.6 ± 7.2	5.7 ± 4.4	10.3 ± 6.9	14.9 ± 6.9	0.000^a†,b†,c†

^aLow vs. intermediate.

^bLow vs high.

^cIntermediate vs. high.

All scores indicate mean ± standard deviation. ^†Clinically relevant difference according to Norman’s rule of thumb [21].

Cocks K, King MT, Velikova G, et al. Evidence-based guidelines for determination of sample size and interpretation of the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30. J Clin Oncol. 2011;29(1):89–96.

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