Evidence map›Paper›PMID 38967869›Full record

Observational studyQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2024

Demonstrating responsiveness of the pediatric cardiac quality of life inventory in children and adolescents undergoing arrhythmia ablation, heart transplantation, and valve surgery.

Amy M O'Connor, Amy Cassedy, Mitchell Cohen, Caren Goldberg, Jacqueline Lamour, William Mahle, Lynn Mahony, Kathleen Mussatto, Jane Newburger, Marc E Richmond and 6 more

Erratum issuedAbstract readMulticenter StudyObservational Study
PubMed Publisher
In one paragraph

Observational study in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Article
  2. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

16 authors.

Amy M O'ConnorDivisions of a Cardiology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago, 225 East Chicago Avenue, Box 21, Chicago, IL, 60611-2991, USA. amoconnor@luriechildrens.org.
Amy CassedyDivisions of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Mitchell CohenDivision of Cardiology, Department of Pediatrics, Phoenix Children's Hospital, Phoenix, AZ, USA.
Caren GoldbergDivision of Cardiology, Department of Pediatrics, C.S. Mott Children's Hospital, Ann Arbor, MI, USA.
Jacqueline LamourDivision of Cardiology, Department of Pediatrics, Mount Sinai Kravis Children's Hospital, New York, NY, USA.
William MahleDivision of Cardiology, Department of Pediatrics, Children's Healthcare of Atlanta, Atlanta, Georgia.
Lynn MahonyDivision of Cardiology, Department of Pediatrics, University of Texas Southwestern Medical Center, Dallas, TX, USA.
Kathleen MussattoDivision of Cardiology, Department of Pediatrics, Children's Hospital of Wisconsin, Milwaukee, WI, USA.
Jane NewburgerDivision of Cardiology, Department of Pediatrics, Boston Children's Hospital, Boston, MA, USA.
Marc E RichmondDivision of Cardiology, Department of Pediatrics, New York-Presbyterian Morgan Stanley Children's Hospital, New York, NY, USA.
Maully ShahDivision of Cardiology, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Kiona AllenDivisions of a Cardiology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago, 225 East Chicago Avenue, Box 21, Chicago, IL, 60611-2991, USA.
Brian WolfeDivisions of a Cardiology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago, 225 East Chicago Avenue, Box 21, Chicago, IL, 60611-2991, USA.
Gil WernovskyDivision of Cardiology, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Jo WrayDepartment of Pediatric Cardiology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
Bradley S MarinoDepartment of Pediatric Cardiology, Pediatric Institute, Cleveland Clinic Children's, Cleveland, OH, USA.

Funding

Testing the Pediatric Cardiac Quality of Life InventoryK23HD048637 · NICHD · CINCINNATI CHILDRENS HOSP MED CTR · PI MARINO, BRADLEY SCOTT · 2005 to 2009
$801k
American Heart Association 0465467Cincinnati Children's Hospital Medical Center 31-554000-355514National Institute of Child Health and Human Development 5-K23-HD048637-05
6 · The paper itself

Abstract

purposePediatric Cardiac Quality of Life Inventory (PCQLI) is a disease-specific pediatric cardiac health-related quality of life (HRQOL) instrument that is reliable, valid, and generalizable. We aim to demonstrate PCQLI responsiveness in children undergoing arrhythmia ablation, heart transplantation, and valve surgery before and after cardiac intervention.

methodsPediatric cardiac patients 8-18 years of age from 11 centers undergoing arrhythmia ablation, heart transplantation, or valve surgery were enrolled. Patient and parent-proxy PCQLI Total, Disease Impact and Psychosocial Impact subscale scores were assessed pre- and 3-12 months follow-up. Patient clinical status was assessed by a clinician post-procedure and dichotomized into markedly improved/improved and no change/worse/much worse. Paired t-tests examined change over time.

resultsWe included 195 patient/parent-proxies: 12.6 ± 3.0 years of age; median follow-up time 6.7 (IQR = 5.3-8.2) months; procedural groups - 79 (41%) ablation, 28 (14%) heart transplantation, 88 (45%) valve surgery; clinical status - 164 (84%) markedly improved/improved, 31 (16%) no change/worse/much worse. PCQLI patient and parent-proxies Total scores increased (p ≤ 0.013) in each intervention group. All PCQLI scores were higher (p < 0.001) in the markedly improved/improved group and there were no clinically significant differences in the PCQLI scores in the no difference/worse/much worse group.

conclusionThe PCQLI is responsive in the pediatric cardiac population. Patients with improved clinical status and their parent-proxies reported increased HRQOL after the procedure. Patients with no improvement in clinical status and their parent-proxies reported no change in HRQOL. PCQLI may be used as a patient-reported outcome measure for longitudinal follow-up and interventional trials to assess HRQOL impact from patient and parent-proxy perspectives.

Indexed as

Heart TransplantationQuality of LifeAdolescentArrhythmias, CardiacCatheter AblationChildFemaleHeart ValvesHumansMaleParentsPsychometricsSurveys and QuestionnairesCongenital heart diseaseHealth-related quality of lifeResponsiveness

Identifiers

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.