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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