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

Bell, Jill A.; Galaznik, Aaron; Pompilus, Farrah; Strzok, Sara; Bejar, Rafael; Scipione, Fatima; Fram, Robert J.; Faller, Douglas V.; Cano, Stefan; Marquis, Patrick

doi:10.1186/s41687-019-0123-4

Journal of Patient-Reported Outcomes

Table 5 EORTC QLQ-C30 and supplemental items: Item-level endorsement frequencies (n = 18) from Stage 2

From: 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

EORTC QLQ-C30
		Not at all %		A little %		Quite a bit %		Very much %
1	Strenuous activities	0.0		38.9		44.4		16.7
2	Long walk	0.0		22.2		33.3		44.4
3	Short walk	27.8		55.6		11.1		5.6
4	Stay in bed/chair	27.8		44.4		27.8		0.0
5	Need help eating, dressing, washing^a	77.8		16.7		5.6^a		0.0^a
6	Limited work or daily activities	11.1		44.4		33.3		11.1
7	Hobbies	33.3		33.3		27.8		5.6
8	Short of breath	27.8		38.9		22.2		11.1
9	Pain	27.8		16.7		27.8		27.8
10	Need to rest	16.7		27.8		33.3		22.2
11	Trouble sleeping	33.3		22.2		27.8		16.7
12	Felt weak	16.7		38.9		16.7		27.8
13	Lacked appetite	61.1		16.7		16.7		5.6
14	Nauseated	77.8		5.6		11.1		5.6
15	Vomited^a	88.9^a		5.6^a		5.6^a		0.0^a
16	Constipated	22.2		33.3		33.3		11.1
17	Diarrhea	66.7		22.2		5.6		5.6
18	Tired	11.1		44.4		22.2		22.2
19	Pain interfere daily activities	33.3		27.8		16.7		22.2
20	Difficulty concentrating	50.0		27.8		22.2		0.0
21	Feel tense^a	33.3		61.1		5.6^a		0.0^a
22	Worry	22.2		61.1		5.6		11.1
23	Irritable	22.2		61.1		11.1		5.6
24	Depressed^a	33.3		61.1		0.0^a		5.6^a
25	Remembering things	44.4		44.4		11.1		0.0
26	Family life	33.3		44.4		11.1		11.1
27	Social activities	22.2		27.8		33.3		16.7
28	Financial difficulties	38.9		38.9		16.7		5.6
		1 Very poor %	2%	3%	4%	5%	6%	7 Excellent %
29	Overall health	0.0	0.0	33.3	27.8	22.2	11.1	5.6
30	Overall quality of life	0.0	0.0	16.7	27.8	22.2	11.1	22.2
Supplemental items
		Not at all %		A little %		Quite a bit %		Very much %
1	Bone aches or pains	38.9		27.8		16.7		16.7
2	Arms/legs weak	27.8		16.7		33.3		22.2
3	Slowed down	11.1		27.8		44.4		16.7
4	Easily tired	11.1		33.3		38.9		16.7
5	Lacked energy	16.7		22.2		44.4		16.7
6	Bruise	44.4		38.9		11.1		5.6
7	Dizzy	66.7		22.2		0.0		11.1
8	Exertion shortness of breath	22.2		22.2		44.4		11.1
9	Stop for breath when walking	33.3		27.8		27.8		11.1
10	Stairs/getting up from chair	27.8		27.8		27.8		16.7
11	Travel ability limitations	66.7		16.7		16.7		0.0
12	Heavy housework	11.1		16.7		27.8		44.4
13	Shopping exhausting	27.8		11.1		33.3		27.8

^aItem falls short of the WHOQOL criteria

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