Table 3 Psychosocial management recommendations for professional working with EB
Recommendations | Population | Grade strength | Quality of evidence (Average) | Quality of evidence | Key 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) EBS; JEB; DDEB; RDEB Children (n = 24) EBS; JEB; DDEB; RDEB | C | 2- | 2+ 2- 2- | [34] [17] [46] |
ii. We strongly recommend a collaborative patient-professional relationship | |||||
• Training for professionals in working collaboratively with patients. | HCPs (N = 33) | C | 2- | 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 | C | 2- | 2- 2- 2- | [56] [49] [40] |
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 | |||||
Grades | Descriptions in accordance to SIGN [22] | ||||
C | A 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++ | ||||
Ratings | Descriptions in accordance to SIGN [22] | ||||
2- | Case control or cohort studies with a high risk of confounding or bias and a significant risk | ||||