Evidence map›Paper›PMID 42696381›Full record

ArticlePediatric dermatology2026

Severe Junctional Epidermolysis Bullosa: Honoring Parental Values in Pediatric Palliative Decision-Making.

Mark P Popenhagen, Anna L Bruckner, James A Feinstein, Adam B Hill, Shelly Heinrichs, Amanda Stack, Catherine Doernbrack, Caroline Schober-Flores, Caitlin L Cacioppo, Devin M Godber and 1 more

Abstract readCase Reports
PubMed Full text at PMC Publisher
In one paragraph

Article in Pediatric dermatology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Mark P PopenhagenDepartment of Anesthesiology, University of Colorado School of Medicine, Aurora, USA.ORCID https://orcid.org/0000-0002-3467-6848
Anna L BrucknerChildren's Hospital Colorado, Colorado Springs, USA.
James A FeinsteinChildren's Hospital Colorado, Colorado Springs, USA.
Adam B HillChildren's Hospital Colorado, Colorado Springs, USA.
Shelly HeinrichsChildren's Hospital Colorado, Colorado Springs, USA.
Amanda StackChildren's Hospital Colorado, Colorado Springs, USA.
Catherine DoernbrackChildren's Hospital Colorado, Colorado Springs, USA.
Caroline Schober-FloresChildren's Hospital Colorado, Colorado Springs, USA.
Caitlin L CacioppoDepartment of Clinical Nutrition, Children's Hospital Colorado, Colorado Springs, USA.
Devin M GodberDepartment of Occupational Therapy, Children's Hospital Colorado, Colorado Springs, USA.
Emily S GorellDepartment of Dermatology, University of Colorado School of Medicine, Aurora, USA.ORCID https://orcid.org/0000-0002-2813-3089

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Severe junctional epidermolysis bullosa (JEB) is a rare, incurable, autosomal recessive blistering disorder with a uniformly poor prognosis. We present the case of a female infant diagnosed shortly after birth with genetically confirmed severe JEB, whose family prioritized comfort-focused care and memory-making over life-prolonging interventions. Her interdisciplinary care centered on symptom relief, bonding, and alignment with family values. This case underscores the importance of early diagnosis and values-based decision-making in managing rare, life-limiting conditions like severe JEB.

Indexed as

Decision MakingEpidermolysis Bullosa, JunctionalPalliative CareParentsFemaleHumansInfant, Newborndecision makingend‐of‐life careepidermolysis bullosajunctional epidermolysis bullosapalliative care

Identifiers

PMID42696381
PMCPMC13544515

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

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.