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

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
[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 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
[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
  1. EBS EB simplex, JEB junctional EB, DEB dystrophic EB, DDEB dominant dystrophic EB, RDEB recessive dystrophic EB, KEB kindler EB
  2. *Indicates total number of participants, including those in articles not limited to EB
  3. αIndicates total number of participants identified with EB
  4. βIndicates articles with participants from a group of conditions including but not limited to EB
  5. 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