ArticleHealth expectations : an international journal of public participation in health care and health policy2020
Living with epidermolysis bullosa: Daily challenges and health-care needs.
Article in Health expectations : an international journal of public participation in health care and health policy, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis 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
19 citing papers in PubMed, 1 synthesis or guideline pooled it, 38 citations in OpenAlex.
- 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
- 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
- The segmentation of the Argentine healthcare system in the care of patients with epidermolysis bullosa: challenges and proposals for a comprehensive model.Journal of community genetics · 2025Article
- Parental Caregiving Experiences in Epidermolysis Bullosa: A Phenomenological Study.International journal of community based nursing and midwifery · 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
- 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
- Pyloric Atresia in a Neonate With Epidermolysis Bullosa: A Case Report.Clinical case reports · 2024Article
- Parents' perception of challenges of caring of children with Epidermolysis bullosa: a qualitative study.BMC research notes · 2024Article
- The dental needs of children with Epidermolysis Bullosa and service delivery: a scoping review.BMC oral health · 2024Article
- Epidermolysis Bullosa in Spain: A Qualitative Analysis of Its Social Impact on Families With Diagnosed Minors.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- The impact, perceptions and needs of parents of children with epidermolysis bullosa.South African family practice : official journal of the South African Academy of Family Practice/Primary Care · 2024Article
- Lived experiences of patients with epidermolysis bullosa: A rare genetic skin disease.Health SA = SA Gesondheid · 2024Article
- Exploring the Impact of Epidermolysis Bullosa on Parents and Caregivers: A Cross-Cultural Validation of the Epidermolysis Bullosa Burden of Disease Questionnaire.Clinical, cosmetic and investigational dermatology · 2024Article
- 'It breaks my heart': Healthcare practitioners' caring for families with epidermolysis bullosa.Health SA = SA Gesondheid · 2023Article
- It's more than just lubrication of the skin: parents' experiences of caring for a child with ichthyosis.Health psychology and behavioral medicine · 2022Article
- Identifying Epidermolysis Bullosa Patient Needs and Perceived Treatment Benefits: An Explorative Study Using the Patient Benefit Index.Journal of clinical medicine · 2021Article
- Living with epidermolysis bullosa: Daily challenges and health-care needs.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Health care professionals' experiences of caring for children with severe epidermolysis bullosa.Health psychology openArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
BACKGROUND &
objectiveEpidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health-care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. SETTING AND
participantsInterviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region.
resultsParticipants' needs were grouped into five themes: support managing physical health-care issues; access to community/home-based services; EB-specific information and psychosocial support; effective interaction with health-care professionals; and advice regarding benefits and entitlements. DISCUSSION AND
conclusionsThis article represents the health-care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition.
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What OpenQuestion holds
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.