ReviewOrphanet journal of rare diseases2019
Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines.
Review in Orphanet journal of rare diseases, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 44 papers, 4 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
44 citing papers in PubMed, 4 syntheses or guidelines pooled it, 86 citations in OpenAlex.
- Diagnosis and management of cystinosis: systematic review for a clinical practice guideline.Orphanet journal of rare diseases · 2025Pooled it
- Consensus-based guidelines for the provision of palliative and end-of-life care for people living with epidermolysis bullosa.Orphanet journal of rare diseases · 2023Guideline
- Hand surgery and hand therapy clinical practice guideline for epidermolysis bullosa.Orphanet journal of rare diseases · 2022Guideline
- Clinical practice guidelines: Oral health care for children and adults living with epidermolysis bullosa.Special care in dentistry : official publication of the American Association of Hospital Dentists, the Academy of Dentistry for the Handicapped, and the American Society for Geriatric Dentistry · 2020Pooled it
- Updates in the Treatment of Pain and Pruritus in Epidermolysis Bullosa.Pediatric dermatology · 2026Review
- Social participation of patients with epidermolysis bullosa: barriers and facilitators in education, employment, and economic life - a biographic interview study.Orphanet journal of rare diseases · 2026Article
- Interdisciplinary Approach in Pediatric Patients With Recessive Dystrophic Epidermolysis Bullosa: Experience From the Dermatology Service and the Palliative Care and Complex Chronic Patient Team at Sant Joan de Déu Hospital (Barcelona, Spain).Journal of evaluation in clinical practice · 2026Article
- The lived experience and supportive care needs of Australian parents caring for children with Epidermolysis Bullosa: a qualitative descriptive analysis.Orphanet journal of rare diseases · 2025Article
- Health-related quality-of-life evaluation in epidermolysis bullosa: a scoping review protocol.Systematic reviews · 2025Article
- "It's like nursing a butterfly-so delicate, difficult, and unpredictable" - challenges of nurses in caring for patients with epidermolysis bullosa: a qualitative study.Orphanet journal of rare diseases · 2025Article
- Non-Herlitz junctional epidermolysis bullosa in a Native American newborn.Journal of osteopathic medicine · 2025Article
- Parental Caregiving Experiences in Epidermolysis Bullosa: A Phenomenological Study.International journal of community based nursing and midwifery · 2025Article
- Taking care of patients with recessive dystrophic epidermolysis bullosa from birth to adulthood: a multidisciplinary Italian Delphi consensus.Orphanet journal of rare diseases · 2025Article
- The physical, emotional, social, and functional dimensions of epidermolysis bullosa. An interview study on burdens and helpful aspects from a patients' perspective.Orphanet journal of rare diseases · 2025Article
- Addressing the Unmet Educational Needs of Students with Epidermolysis Bullosa in Saudi Arabia.Risk management and healthcare policy · 2025Article
- Mesenchymal stromal cell therapy in epidermolysis bullosa: current perspectives and future directions.Frontiers in cell and developmental biology · 2025Review
- The Saudi National Policy and Protocol for Epidermolysis Bullosa.Risk management and healthcare policy · 2025Article
- Consensus statements for the biopsychosocial care of patients with epidermolysis bullosa South Africa: Part 2.Health SA = SA Gesondheid · 2025Article
- When care hurts: parents' experiences of caring for a child with epidermolysis bullosa.Orphanet journal of rare diseases · 2024Article
- Rare Disease Focused Antenatal Education and Diagnosis Support: Two Case Studies of Epidermolysis Bullosa Simplex.Orphanet journal of rare diseases · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors at 8 institutions in 7 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Epidermolysis Bullosa (EB) is a group of rare genetic disorders resulting in skin fragility and other symptoms. Commissioned by DEBRA International and funded by DEBRA Norway, this evidence-bases guideline provides recommendations to optimise psychosocial wellbeing in EB.An international multidisciplinary panel of social and health care professionals (HCP) and people living with EB was formed. A systematic international literature review was conducted by the panel following the Scottish Intercollegiate Guidelines Network (SIGN) methodology. The resulting papers underwent systematic selection and critique processes. Included papers were allocated to 6 different outcome groups to allow data synthesis and exploration: quality of life, coping, family, wellbeing, access to HCP and pain. Based on the evidence in those papers, recommendations were made for individuals living with EB, family and caregivers and HCP working in the field.Few studies have investigated interventions and which factors lead to better outcomes, but general recommendations can be made. EB is a complex disease impacting enormously on every aspect of psychosocial life. People and families living with EB need access to multidisciplinary support, including psychological guidance, in order to improve quality of life and psychosocial wellbeing. Interventions should stimulate social participation to prevent isolation. People with EB and their families should be able to access a supportive network. HCP should be well supported and educated about the complexity of EB. They should work collaboratively with those around the individual with EB (e.g. schools, employers etc.) to provide psychosocial opportunity and care.Attention should be paid to the psychosocial impact of EB as well as physical needs. Directions for research are indicated.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.