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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