Supporting sexuality for people living with epidermolysis bullosa: clinical practice guidelines

Table 3 Overview of evidence for the psychosocial factors impacting sexuality domain

Domains and outcomes	Number of articles allocated	Total participants with EB	Gender Numbers^λ	Age in years Range	Study type	References
Domain addressing Psychosocial factors impacting sexuality
(A) Factors such as: a. quality of life b. life span c. stigmas d. vulnerabilities e. access to social participation	16	1153* 700 EB^α 143 EBS 121 DDEB 105 RDEB 24 DEB 25 JEB 9 KEB 7 Unknown	83 Male 83 Female	0 to 89	6 Qualitative 4 Systematic literature review 2 Cross sectional observational 2 Symposium report 1 Book chapter 1 Validation study	[7,8,9,10,11,12,13,14,15,16,17,18,19,20,21,22] [7, 10, 12, 22]^β
(B) Interventions such as: a. age-appropriate b. family education c. self-esteem d. body image e. self-advocacy f. transition	20	1301* 852 EB^α 168 EBS 122 RDEB 121 DDEB 74 DEB 25 JEB 9 KEB 7 Unknown	97 Male 109 Female	0 to 89	8 Qualitative 4 Systematic literature review 2 Cross sectional observational 2 Symposium report 1 Book chapter 1 Validation study 1 Quantitative 1 Retrospective study	[7,8,9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26] [7, 10, 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

ISSN: 1750-1172