Table 3.

Patient benefit index.

		n	Median (IQR)	Range (Min–Max)	PBI ≥ 1 * (%)
(a) PBI	Global	68	1.34 (0.68–2.58)	0.00–4.00	60.3
	EBS	29	0.96 (0.59–2.20)	0.00–3.92	48.3
	RDEB	6	1.35 (0.43–2.34)	0.31–3.52	66.7
	DDEB	23	1.61 (0.80–2.93)	0.00–4.00	60.9
	JEB	10	2.28 (0.84–2.79)	0.32–3.81	80.0
	Male	30	1.41 (0.83–2.86)	0.00–4.00	60.0
	Female	38	1.31 (0.61–2.38)	0.00–4.00	60.5
(b) PBI subscales	Reducing Social Impairments	45	1.43 (0.37–2.67)	0.00–4.00	60.0
	Reducing Psychological Impairments	45	2.00 (0.79–3.00)	0.00–4.00	73.3
	Reducing Impairments due to Therapy	39	1.00 (0.50–3.00)	0.00–4.00	53.8
	Reducing Physical Impairments	63	1.55 (0.63–3.00)	0.00–4.00	71.4
	To have Confidence in Healing	41	1.33 (1.00–3.00)	0.00–4.00	82.9

Results are presented as median values, interquartile ranges and proportion of participants achieving a score ≥ 1. (a) PBI is stratified by subtype and sex. (b) PBI subscale scores are represented similarly. IQR: Interquartile range (25th and 75th percentiles). Additional information can be found in the supporting information available online (Table S2, Figure S1). * A PBI score ≥1 meant that a minimal clinically important difference (MCID) could be assumed.