Table 4.

Overview of evidence for the mechanical factors impacting sexuality domain

Domains and outcomes	Number of articles allocated	Total participants with EB	Gender Numbersλ	Age in years Range	Study type	References
Domain addressing Mechanical factors impacting sexuality
(A) Mechanical factors: a. across lifespan b. systemic and physical function c. sexual involvement d. self-exploration e. sexual experiences f. sexual knowledge	13	3460 EBα 1688 EBS 457 RDEB 425 DDEB 236 JEB 50 DEB	27 Male 41 Female	1 to 86	3 Systematic literature review 3 Qualitative 2 Symposium report 1 Retrospective study 1 Quantitative 1 Book chapter 1 Registry 1 Case reports	[8, 9, 11, 17, 22–30] [22]β
(B) Intervention for mechanical factors affecting sexuality such as: a. condition-specific b. sexual/pubertal c. self-exploration d. medical interventions e. sexual knowledge f. family planning	15	4152* 3692 EBα 1685 EBS 457 RDEB 425 DDEB 236 JEB 50 DEB	27 Male 41 Female	1 to 86	3 Systematic literature review 4 Qualitative 2 Symposium report 1 Retrospective study 1 Quantitative 1 Book chapter 1 Validation study 1 Registry 1 Case reports	[8, 9, 11, 12, 17, 21–30] [12, 22]β

EBS EB simplex, JEB junctional EB, DEB dystrophic EB, DDEB dominant dystrophic EB, RDEB recessive dystrophic EB, KEB Kindler EB

*Indicates total number of participants, including those in articles not limited to EB

^αIndicates total number of participants identified with EB

^βIndicates articles with participants from a group of conditions including but not limited to EB

^λGender numbers represent the sum of demographics reported in the corresponding articles. Please note that very few included articles report gender nor do they indicate gender as self-identified or assigned-at-birth