Patient-reported outcomes measures of X-linked hypophosphataemia participants: findings from a prospective cohort study in the UK

Table 4 Longitudinal summary statistics

Instrument	Issue 1				Issue 2				Issue 3				Issue 4
Instrument	n	Mean	Median	SD	n	Mean	Median	SD	n	Mean	Median	SD	n	Mean	Median	SD
Health related quality of life
EQ-5D-5L Index score (VT)	47	0.650	0.738	0.273	23	0.729	0.801	0.176	25	0.689	0.733	0.189	27	0.700	0.751	0.238
EQ5D VAS score	47	63.17	70	25.56	23	70.13	70	18.88	25	65.24	70	21.80	27	67.37	72	22.95
EQ5D-3L Index score (CW)	47	0.552	0.654	0.303	23	0.630	0.706	0.218	25	0.601	0.642	0.201	27	0.603	0.679	0.269
SF-36- physical component score	42	33.32	32.91	14.1	22	36.59	35.53	10.41	26	31.37	30.26	11.57	26	36.29	35.18	14.72
SF-36- mental component score	42	48.72	49.99	10.54	22	48.82	51.84	10.03	26	50.86	54.62	11.47	26	47.71	49.59	11.80
Fatigue
FACIT-F score	24	105.26	109.5	29.10	25	108.93	106	26.81	26	105.62	112.5	28.50	27	106.38	106	27.00
FACIT-F- physical well-being	24	18.96	19.5	6.48	25	19.16	20	5.84	26	18.73	19.5	5.70	27	19.78	21	5.58
FACIT-F- social well-being	24	20.89	21.5	5.25	25	20.29	19.83	5.10	26	19.69	20.5	5.60	27	19.3	21	5.69
FACIT-F- emotional well-being	24	16.75	17	4.12	25	16.28	17	4.87	26	16.42	18	5.25	27	16.74	18	4.34
FACIT-F- functional well-being	24	18.42	18.5	5.51	25	18.80	19	5.39	26	17.38	17.5	5.42	27	17.44	18	5.56
FACIT-F- fatigue subscale	24	30.25	33.5	13.87	25	34.40	34	10.81	26	33.38	34.5	12.23	27	33.11	30	12.60
Pain
McGill pain score	43	1.89	1.68	1.47	22	1.83	1.48	1.47	24	1.82	1.61	1.29	26	1.76	1.09	1.50
Pain detect score	40	9.33	9	6.32	21	10.90	10	8.32	24	10.38	8.5	7.72	25	9.56	9	6.06
Sleep
PSQI score	41	8.88	9	4.12	23	8.48	8	4.05	24	8.42	8	4.21	26	7.92	8	3.55
Mental wellbeing
HADS anxiety score	24	6.17	6	3.51	22	5.64	5	4.04	25	6.92	6	3.95	25	6.28	6	3.84
HADS depression score	24	4.58	4	3.13	22	4.45	4	3.43	25	4.92	4	3.12	25	4.56	4	2.71

The sample is all submitted questionnaires from the first four submissions
EQ-5D-5L (3L), EuroQol 5 dimensions-5 levels (3 levels); VAS, Visual analogue scale; SF-36, Short-form 36; PCS, Physical Component Score; MCS, Mental Component Score; FSS, Fatigue Severity Scale; ESS, Epworth Sleepiness scale; PSQI, Pittsburgh sleep quality index; FACIT-F, Functional assessment of chronic illness therapy-fatigue; SF-MPQ-2, Short form McGill pain questionnaire version 2; HADS, Hospital anxiety and depression scale

ISSN: 1750-1172