Evidence map›Paper›PMID 41764674›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2026

Quality of life surveys developed or validated in children or youth with special healthcare needs: a scoping review.

Stefanie G Ames, Margaret Comeau, Christie Piper, Bethlynn Vergo Houlihan, Kirk Bjella, Hannah Friedman, Steph Lomangino, Isabel K Taylor, Charlene Shelton, Christopher J Stille

Abstract readScoping Review
PubMed Publisher
In one paragraph

Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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0cells of the map it votes in
0citing papers in PubMed
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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

10 authors.

Stefanie G AmesDepartment of Pediatrics, University of Utah School of Medicine, MS30 N Mario Capecchi Drive, Salt Lake City, UT, 84112, USA. Stefanie.ames@hsc.utah.edu.ORCID http://orcid.org/0000-0002-4972-4777
Margaret ComeauCenter for Innovation in Social Work and Health, Boston University School of Social Work, Boston, MA, USA.
Christie PiperStrauss Health Sciences Library, University of Colorado Anschutz Medical Campus, Aurora, CO, USA.
Bethlynn Vergo HoulihanCenter for Innovation in Social Work and Health, Boston University School of Social Work, Boston, MA, USA.
Kirk BjellaDepartment of Pediatrics, University of Utah School of Medicine, MS30 N Mario Capecchi Drive, Salt Lake City, UT, 84112, USA.
Hannah FriedmanDepartment of Pediatrics, University of Colorado School of Medicine and Children's Hospital Colorado, Aurora, CO, USA.
Steph LomanginoFamily Voices, Concord, MA, USA.
Isabel K TaylorDepartment of Pediatrics, University of Utah School of Medicine, MS30 N Mario Capecchi Drive, Salt Lake City, UT, 84112, USA.
Charlene SheltonDepartment of Pediatrics, University of Colorado School of Medicine and Children's Hospital Colorado, Aurora, CO, USA.
Christopher J StilleDepartment of Pediatrics, University of Colorado School of Medicine and Children's Hospital Colorado, Aurora, CO, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeCurrent survey measures of quality of life (QoL) may not be sufficient to describe domains that are important to children and youth with special healthcare needs (CYSHCN) and their families. A better understanding of current QoL surveys for CYSHCN is needed.

methodsA scoping review of the literature was conducted utilizing the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. A comprehensive search strategy was developed and performed across multiple electronic databases (Ovid Medline, Embase, CINAHL, and Web of Science) to identify studies published between 1/1/2000 and 2/27/2023. Two independent reviewers screened abstracts for inclusion, followed by full-text reviews with discrepancies resolved by a third party when necessary. Articles included focused on the development or validation of a measure of QoL in CYSHCN. Data extraction was performed to capture key information. Surveys were obtained when able for item review.

resultsOut of an initial 11,212 abstracts screened for inclusion, a final 305 articles were included. These articles represented 47 distinct surveys of QoL. Surveys were developed in a variety of health care conditions and available in multiple languages and forms. Of the 41 surveys available for item review, 61% (n = 25/41) included a domain of physical function as a key component of QoL.

conclusionA scoping review of measures of QoL in CYSHCN identified a large volume of literature incorporating 47 unique surveys. However, few surveys considered CYSHCN directly in their initial development and validation, leading to concerns about the ability of these surveys to accurately assess QoL in CYSHCN.

Indexed as

Children with DisabilitiesQuality of LifeAdolescentChildHumansPsychometricsReproducibility of ResultsSurveys and QuestionnairesChildren and youth with special healthcare needsDisabilityMeasurementQuality of life

Identifiers

PMID41764674

What OpenQuestion holds

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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.