Evidence map›Paper›PMID 31860639›Full record

ArticlePloS one2019

Assessing gastro-intestinal related quality of life in cystic fibrosis: Validation of PedsQL GI in children and their parents.

Mieke Boon, Ine Claes, Trudy Havermans, Victoria Fornés-Ferrer, Joaquim Calvo-Lerma, Inês Asseiceira, Anna Bulfamante, María Garriga, Etna Masip, Sandra Woodcock and 14 more

Open access · goldAbstract readValidation Study
In one paragraph

Article in PloS one, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
17citing papers in PubMed, 1 pooled it
3.7field-weighted citation impact, top 6% of its field
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

17 citing papers in PubMed, 1 synthesis or guideline pooled it, 41 citations in OpenAlex.

  1. The measurement properties of tests and tools used in cystic fibrosis studies: a systematic review.European respiratory review : an official journal of the European Respiratory Society · 2021
    Pooled it
  2. Article
  3. Article
  4. Article
  5. Article
  6. Article
  7. Review
  8. Update on Cystic Fibrosis in Pediatric Patients.Current gastroenterology reports · 2023
    Review
  9. Article
  10. Multicenter prospective study showing a high gastrointestinal symptom burden in cystic fibrosis.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2023
    Article
  11. Article
  12. Changes in fecal microbiota with CFTR modulator therapy: A pilot study.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2021
    Article
  13. Testing measurement properties of two EQ-5D youth versions and KIDSCREEN-10 in China.The European journal of health economics : HEPAC : health economics in prevention and care · 2021
    Article
  14. Review
  15. Designing the GALAXY study: Partnering with the cystic fibrosis community to optimize assessment of gastrointestinal symptoms.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2021
    Observational
  16. Utilization of electronic patient-reported outcome measures in cystic fibrosis research: Application to the GALAXY study.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2021
    Article
  17. Review
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

24 authors at 4 institutions in 3 countries.

Mieke BoonCystic Fibrosis Center, Department of Pediatrics, University Hospital Gasthuisberg, Leuven, Belgium.ORCID 0000-0001-8138-5405
Ine ClaesCystic Fibrosis Center, Department of Pediatrics, University Hospital Gasthuisberg, Leuven, Belgium.
Trudy HavermansCystic Fibrosis Center, Department of Pediatrics, University Hospital Gasthuisberg, Leuven, Belgium.
Victoria Fornés-FerrerInstituto de Investigación Sanitaria La Fe de Valencia, Spain.
Joaquim Calvo-LermaInstituto de Investigación Sanitaria La Fe de Valencia, Spain.ORCID 0000-0001-7818-0652
Inês AsseiceiraAssociação para a Investigação e Desenvolvimento da Faculdade de Medicina, Lisbon, Portugal.
Anna BulfamanteUniversità degli Studi di Milano, Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Milan, Italy.
María GarrigaHospital Universitario Ramón y Cajal, Madrid, Spain.
Etna MasipInstituto de Investigación Sanitaria La Fe de Valencia, Spain.
Sandra WoodcockErasmus Medical Center, Sophia Children's Hospital, Rotterdam, Netherlands.ORCID 0000-0002-5702-2564
Sylvia WaletErasmus Medical Center, Sophia Children's Hospital, Rotterdam, Netherlands.
Celeste BarretoAssociação para a Investigação e Desenvolvimento da Faculdade de Medicina, Lisbon, Portugal.
Carla ColomboUniversità degli Studi di Milano, Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Milan, Italy.
Paula CrespoInstituto de Investigación Sanitaria La Fe de Valencia, Spain.
Els Van der WielErasmus Medical Center, Sophia Children's Hospital, Rotterdam, Netherlands.
Jessie HulstErasmus Medical Center, Sophia Children's Hospital, Rotterdam, Netherlands.
Sandra Martinez-BaronaInstituto de Investigación Sanitaria La Fe de Valencia, Spain.
Rita NobiliUniversità degli Studi di Milano, Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Milan, Italy.
Luisa PereiraAssociação para a Investigação e Desenvolvimento da Faculdade de Medicina, Lisbon, Portugal.
Mar RupertoHospital Universitario Ramón y Cajal, Madrid, Spain.
Saioa VicenteHospital Universitario Ramón y Cajal, Madrid, Spain.
Kris De BoeckCystic Fibrosis Center, Department of Pediatrics, University Hospital Gasthuisberg, Leuven, Belgium.
Carmen Ribes-KoninckxInstituto de Investigación Sanitaria La Fe de Valencia, Spain.
MyCyFAPP consortium
Instituto de Investigación Sanitaria La Fe · ESErasmus MC - Sophia Children’s Hospital · NLHospital Universitario Ramón y Cajal · ESUniversity of Milan · IT

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundMost patients with cystic fibrosis (CF) suffer from pancreatic insufficiency, leading to fat malabsorption, malnutrition and abdominal discomfort. Until recently, no specific tool was available for assessing gastro-intestinal related quality of life (GI QOL) in patients with CF. As the Horizon2020 project MyCyFAPP aims to improve GI QOL by using a newly designed mobile application, a sensitive and reliable outcome measure was needed. We aimed to study the applicability of the existing child-specific Pediatric Quality of Life Inventory, Gastrointestinal Symptoms Scales and Module (PedsQL GI) in children with CF.

methodsA multicenter, prospective observational study was performed in 6 European centers to validate the PedsQL GI in children with CF during 3 months.

resultsIn total, 248 children and their parents were included. Within-patient variability of PedsQL GI was low (24.11), and there was reasonable agreement between children and parents (ICC 0.681). Nine of 14 subscales were informative (no ceiling effect). The PedsQL GI and the median scores for 4 subscales were significantly lower in patients compared to healthy controls. Positive associations were found between PedsQL GI and age (OR = 1.044, p = 0.004) and between PedsQL GI and BMI z-score (OR = 1.127, p = 0.036). PedsQL GI correlated with most CFQ-R subscales (r 0.268 to 0.623) and with a Visual Analogue Scale (r = 0.20).

conclusionsPedsQL GI is a valid and applicable instrument to assess GI QOL in children with CF. Future research efforts should examine the responsiveness of the CF PedsQL GI to change in the context of clinical interventions and trials.

Indexed as

ParentsQuality of LifeAdolescentAdultChildChild, PreschoolCystic FibrosisFemaleGastrointestinal DiseasesHealth StatusHumansMaleProspective StudiesPsychometricsSurveys and Questionnaires

Identifiers

PMID31860639
PMCPMC6924691
OpenAlexW2994943786

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.