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Table 4 Overview of evidence for the mechanical 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
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, 22,23,24,25,26,27,28,29,30]
[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, 21,22,23,24,25,26,27,28,29,30]
[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