A pragmatic patient-reported outcome strategy for rare disease clinical trials: application of the EORTC item library to myelodysplastic syndromes, chronic myelomonocytic leukemia, and acute myeloid leukemia

Journal of Patient-Reported Outcomes

Table 4 EORTC QLQ-C30: Item-level endorsement frequencies (n = 14) from Stage 1

EORTC QLQ-C30
		Not at all %		A little %		Quite a bit %		Very much %
1	Strenuous activities	7.1		28.6		42.9		21.4
2	Long walk	7.1		14.3		42.9		35.7
3	Short walk	35.7		50.0		14.3		0.0
4	Stay in bed/chair	57.1		21.4		14.3		7.1
5	Need help eating, dressing, washing^a	85.7		14.3		0.0^a		0.0^a
6	Limited work or daily activities	14.3		57.1		28.6		0.0
7	Hobbies	35.7		28.6		14.3		21.4
8	Shortness of breath	14.3		64.3		14.3		7.1
9	Pain	50.0		21.4		21.4		7.1
10	Need to rest	7.1		35.7		35.7		21.4
11	Trouble sleeping	42.9		35.7		7.1		14.3
12	Feeling weak	7.1		57.1		14.3		21.4
13	Lack of appetite	28.6		50.0		42.9		7.1
14	Nausea^a	50.0		42.9		7.1^a		0.0^a
15	Vomiting^a	71.4		28.6		0.0^a		0.0^a
16	Constipation	28.6		28.6		28.6		14.3
17	Diarrhea^a	71.4		21.4		0.0^a		7.1^a
18	Tiredness	0.0		50.0		28.6		21.4
19	Pain interfere daily activities	42.9		28.6		14.3		14.3
20	Difficulty concentrating	50.0		35.7		14.3		0.0
21	Feeling tense	35.7		50.0		14.3		0.0
22	Worry	14.3		57.1		21.4		7.1
23	Irritable mood	14.3		71.4		14.3		0.0
24	Depressed mood	42.9		42.9		7.1		7.1
25	Remembering things	42.9		35.7		21.4		0.0
26	Family life	35.7		28.6		21.4		14.3
27	Social activities	14.3		28.6		50.0		7.1
28	Financial difficulties	57.1		28.6		7.1		7.1
		1 Very poor %	2%	3%	4%	5%	6%	7 Excellent %
29	Overall health	0.0	7.1	14.3	14.3	35.7	28.6	0.0
30	Overall quality of life	0.0	0.0	28.6	21.4	21.4	14.3	14.3