CLINICAL PRACTICE

GUIDELINES FOR EB 

EB is a highly complex condition requiring the involvement of a interdisciplinary team to address the various health and social aspects of care. To help ensure the best possible care for EB patients and their families worldwide, we are undertaking a long-term initiative to develop clinical practice guidelines (CPGs) for EB.

 

CPGs provide best practice information and recommendations that guide health and social care professionals as they care for people with EB. The guidelines are based on evidence gained from medical science and, when no evidence exists, on professional and patient expert opinion. In a condition as complex as EB, where approaches to care differ greatly, CPGs provide a very useful framework to support and improve clinical and social care decision-making. Below, you can find all the CPGs we have published as well as information on the ones we are currently developing.

 

Patient versions

For every newly published CPG, we are designing complementary patient version booklets for use by EB patients and carers. These booklets "translate" the information and recommendations from the CPGs into a language style and format that is more suitable for a lay audience. Please consider sharing these documents with your EB patients and their carers.

EB infographics

The EB infographics have been developed chiefly to support those living with EB in low-resource settings. Like the patient versions, the information contained within them is derived from the published CPGs. Unlike the patient versions, the information is adapted for situations where medical resources are limited and is primarily displayed using icons with supplementary written explanations. Although targeted at people living in low-resource settings, the information is still relevant to anyone living with or caring for someone with EB. ​Please consider sharing these documents with your EB patients and their carers.

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Management of cutaneous squamous cell carcinoma in patients with epidermolysis bullosa: best clinical practice guidelines

Published 2015

Topics covered in this CPG include:

  • surveillance and monitoring

  • tumour evaluation and staging

  • surgical treatment

  • nonsurgical treatment

  • prosthetics

  • prevention

  • end-of-life care

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Foot care in epidermolysis bullosa: evidence-based guideline

Published 2019 | Funded by DEBRA UK

Topics covered in this CPG include:

  • blistering and wound management

  • dystrophic nails

  • hyperkeratosis (callus)

  • footwear

  • mobility

  • pseudosyndactyly

  • podiatrist professional development

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Clinical practice guidelines for laboratory diagnosis of epidermolysis bullosa

 

Published 2019 | Funded by DEBRA Austria

Topics covered in this CPG include:

  • classification of EB with genes and causative variants

  • clinical features of EB

  • types of laboratory referral

  • EB laboratory diagnosis flowchart

  • genetic testing for EB

  • immunofluorescence mapping

  • electron microscopy

  • reporting scenarios

  • recommendations for laboratory diagnosis of EB

  • how does the guideline work in practice?

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Occupational therapy for epidermolysis bullosa: clinical practice guidelines

 

Published 2019 | Funded by DEBRA of America

Topics covered in this CPG include:

  • activities of daily living relating to self-care

  • instrumental activities of daily living

  • maximisation of hand function

  • fine motor development and retention of fine motor skills

  • oral feeding skills

  • how your/your child’s podiatrist can help

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Clinical practice guidelines: Oral health care for children and adults living with epidermolysis bullosa

 

Published 2020 | Funded by DEBRA UK

Topics covered in this CPG include:

  • general information on EB for the oral health care professional

  • oral manifestations of EB

  • oral health care and dental treatment for children and adults living with EB

  • dental implants in patients with recessive dystrophic EB

  • sedation and anesthesia for adults and children with EB undergoing dental treatment

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Pain care for patients with epidermolysis bullosa:
best care practice guidelines

Published 2014

Topics covered in this CPG include:

  • psychological and integrative approaches

  • acute pain care: postoperative pain management

  • chronic and recurrent pain care

    • skin and wound pain

    • bathing and dressing changes

    • pain related to the gastrointestinal tract

    • musculoskeletal pain

  • pain care in infants with EB

  • end of life pain care

  • pruritus

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

 

Published 2019 | Funded by DEBRA Norway

Topics covered in this CPG include:

  • psychosocial care for individuals living with EB

  • psychosocial care for family and care givers of people with EB

  • self-care for professionals working with those affected by EB

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Supporting sexuality for people living with epidermolysis bullosa: clinical practice guidelines

 

Published 2021 | Funded by DEBRA Norway

Topics covered in this CPG include:

  • current understanding of EB and sexuality

  • preliminary recommendations for assessment and intervention strategies

  • future research priorities within this domain

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International consensus best practice guidelines Skin and wound care in epidermolysis bullosa

Published 2017

Topics covered in this CPG include:

  • understanding EB

  • skin and wound management: general principles

    • management of blisters​

    • wound dressing considerations

  • general measures for end-of-life care

  • case studies

 
 
 
 
 
 
 
 
 
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