From: Supporting sexuality for people living with epidermolysis bullosa: clinical practice guidelines
Domains and outcomes | Number of articles allocated | Total participants with EB | Gender Numbersλ | 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 EBα 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 | |
(B) Interventions such as: a. age-appropriate b. family education c. self-esteem d. body image e. self-advocacy f. transition | 20 | 1301* 852 EBα 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 |