Evidence map›Paper›PMID 42144239›Full record

ArticleHospital pediatrics2026

Parent Experiences Accessing Inpatient Clinical Notes on a Pediatric Oncology Service.

Madeline Q Kieren, Cathy Lee-Miller, Catherine Arnott Smith, Roger Brown, Jamie J Limjoco, Kristin McArdle, Anna Uhing, Anne Veit, Michelle M Kelly

Abstract read
In one paragraph

Article in Hospital pediatrics, 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

9 authors.

Madeline Q KierenDepartment of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin.
Cathy Lee-MillerDepartment of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin.
Catherine Arnott SmithThe Information School, University of Wisconsin-Madison, Madison, Wisconsin.
Roger BrownDepartment of Biostatistics, University of Wisconsin-Madison, Madison, Wisconsin.
Jamie J LimjocoDepartment of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin.
Kristin McArdleUW Health, University of Wisconsin-Madison, Madison, Wisconsin.
Anna UhingDepartment of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin.
Anne VeitPatient and Family Advisory Council, UW Health, University of Wisconsin-Madison, Madison, Wisconsin.
Michelle M KellyDepartment of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin.

Funding

University of Wisconsin Institute for Clinical and Translational ResearchUL1TR002373 · NCATS · UNIVERSITY OF WISCONSIN-MADISON · PI ELIZABETH S BURNSIDE, Allan R. Brasier · 2017 to 2026
$75.9M
AHRQ HHS R21 HS027894NCATS NIH HHS UL1 TR002373
6 · The paper itself

Abstract

backgroundDespite the 21st Century Cures Act mandating open access to clinical notes, parent engagement remains low, with less than 10% accessing notes during their child's hospitalization at our children's hospital across all services. Parents play a critical role in patient safety but often experience challenges staying informed due to limited access to written clinical information.

objectiveEvaluate parent access to and experiences with clinical notes using a bedside tablet during their child's oncology hospitalization.

methodsIn this mixed methods study, parents of children younger than 12 years admitted to an oncology service from August 2022 to June 2023 received real-time note access via a 4-digit login to the patient portal application on a bedside tablet. Note access was electronically tracked. Parent experiences were assessed using OpenNotes survey items and semistructured interviews analyzed using conventional content analysis.

resultsAll 25 parents accessed at least 1 note, with a mean of 31 notes per parent (range: 1-134). Of 1599 notes written, 1594 (99.7%) were shared to the portal, and 781 (49.0%) were accessed. Most parents found notes understandable (92%) and useful for tracking daily plans and discharge goals (80%). Five parents (20%) identified possible inaccuracies; 60% were confirmed safety concerns (eg, medication error). Note access increased parent self-efficacy in understanding their child's care, evoked a spectrum of emotions, and required management of complex medical information.

conclusionAlthough most parents found notes beneficial, efforts are needed to support parent navigation of complex information and systematically address parent-identified safety concerns.

Indexed as

Electronic Health RecordsOncology Service, HospitalParentsAdultChildChild, PreschoolFemaleHospitals, PediatricHumansInfantInpatientsMalePatient Portals

Identifiers

PMID42144239
PMCPMC13500043

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.