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Table 3 Psychosocial management recommendations for professional working with EB

From: Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines

RecommendationsPopulationGrade strengthQuality of evidence (Average)Quality of evidenceKey references
i. We strongly recommend psychosocial expertise to help people to cope with living with EB
Access to EB specialised care
 • Nurturing a good relationship between professionals, family and person with EB
 • Training for non-EB professionals
Children 10–14 years old (n = 11) EBS (autosomal recessive)
Children (n = 11/82)
Children (n = 24)
ii. We strongly recommend a collaborative patient-professional relationship
 • Training for professionals in working collaboratively with patients.HCPs (N = 33)C2-2-[56]
iii. We strongly recommend offering support for professionals working in EB
 • To promote well-being for the healthcare professional
 • Emotional support is necessary: Personal support but also on an organisational level.
 • Importance of Professionals self-care: awareness, support to do this and access to clinical supervision.
 • Important to not work in isolation: the need to link in with an MDT and to feel equipped through information and education to help with psychosocial needs.
Key Stakeholders (N = 30)
Key Stakeholders (N = 30)
Adults (N = 6) JEB, DDEB
Key: EB: Epidermolysis Bullosa; RDEB: Recessive Dystrophic Epidermolysis Bullosa; JEB: Junctional Epidermolysis Bullosa; DDEB: Dominant Dystrophic Epidermolysis Bullosa; EBS: Epidermolysis Bullosa Simplex EBS-I: Localised form of EBS; KS Kindler Syndrome; HCPs: Health care professionals; MDT: multidisciplinary team; n: number of; α: gray literature; this is an EB guideline
GradesDescriptions in accordance to SIGN [22]
 CA body of evidence including studies rated as 2+, directly applicable to the target population and demonstrating overall consistency of results; or Extrapolated evidence from studies rated as 2++
RatingsDescriptions in accordance to SIGN [22]
 2-Case control or cohort studies with a high risk of confounding or bias and a significant risk