Evidence map›Paper›PMID 37196396›Full record

ArticleSleep medicine2023

Caregiver experiences helping children with Down syndrome use positive airway pressure to treat obstructive sleep apnea.

Melissa S Xanthopoulos, Maria N Nelson, Whitney Eriksen, Frances K Barg, Kelly C Byars, Stacey L Ishman, Anna J Esbensen, Jareen Meinzen-Derr, Christine H Heubi, Neepa S Gurbani and 3 more

Open access · greenAbstract read
In one paragraph

Article in Sleep medicine, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed
1.2field-weighted citation impact, top 21% 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

7 citing papers in PubMed, 7 citations in OpenAlex.

  1. Article
  2. Article
  3. Review
  4. Article
  5. Caregivers' outcome prioritization for home positive airway pressure in children: a mixed-methods study.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2025
    Article
  6. Adults with Down syndrome and obstructive sleep apnea treated with hypoglossal nerve stimulation.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2025
    Article
  7. Adherence to positive airway pressure therapy in patients with Down syndrome: assessing cloud-based monitoring data.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2025
    Article
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

13 authors at 3 institutions in 1 country.

Melissa S XanthopoulosSleep Center, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA. Electronic address: xanthop@chop.edu.
Maria N NelsonMixed Methods Research Lab, Department of Family Medicine and Community Health, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Whitney EriksenMixed Methods Research Lab, Department of Family Medicine and Community Health, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Frances K BargMixed Methods Research Lab, Department of Family Medicine and Community Health, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Kelly C ByarsDepartment of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Behavioral Medicine and Clinical Psychology/Pulmonary Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Stacey L IshmanDepartment of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Pediatric Otolaryngology-Head and Neck Surgery, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA; Department of Otolaryngology-Head and Neck Surgery, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Pulmonary and Sleep Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Anna J EsbensenDepartment of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Jareen Meinzen-DerrDepartment of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Christine H HeubiDepartment of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Pediatric Otolaryngology-Head and Neck Surgery, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA; Department of Otolaryngology-Head and Neck Surgery, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Pulmonary and Sleep Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Neepa S GurbaniDepartment of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Pulmonary and Sleep Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Ruth BradfordSleep Center, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Suzanna HicksDivision of Pulmonary and Sleep Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Ignacio E TapiaSleep Center, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Cincinnati Children's Hospital Medical Center · USChildren's Hospital of Philadelphia · USUniversity of Pennsylvania · US

Funding

LCenter for Clinical and Translational Science and TrainingUL1TR001425 · NCATS · UNIVERSITY OF CINCINNATI · PI HEUBI, JAMES E., KISSELA, BRETT M · 2015 to 2024
$37.5M
Penn Mental Health AIDS Research CenterP30MH097488 · NIMH · UNIVERSITY OF PENNSYLVANIA · PI Karine Dube · 2013 to 2026
$23.5M
Transforming mental health delivery through behavioral economics and implementation scienceP50MH113840 · NIMH · UNIVERSITY OF PENNSYLVANIA · PI BUTTENHEIM, ALISON MEREDITH · 2017 to 2020
$6.6M
INCLUDE19 – Evaluating outcome measures in young adults with Down syndromeR01HD093754 · NICHD · CINCINNATI CHILDRENS HOSP MED CTR · PI Anna J. Esbensen · 2018 to 2026
$6.2M
Executive Function Outcome Measures for Young Children with Down SyndromeR01HD099150 · NICHD · COLORADO STATE UNIVERSITY · PI DEBORAH J FIDLER · 2019 to 2026
$4.7M
Velopharyngeal insufficiency following cleft palate repair: a comparative effectiveness study of existing surgical procedures and identification of criteria to guide a personalized treatment approachU01DE029750 · NIDCR · PHOENIX CHILDREN'S HOSPITAL · PI SITZMAN, THOMAS JAMES · 2020 to 2024
$4.2M
Remote Supervision for Implementing Collaborative Care for Perinatal DepressionR01MH108548 · NIMH · UNIVERSITY OF WASHINGTON · PI BENNETT, IAN MOORE · 2016 to 2020
$3.9M
Early childhood communication outcome measures for DSR01HD093654 · NICHD · UNIVERSITY OF CALIFORNIA AT DAVIS · PI THURMAN, ANGELA JOHN · 2018 to 2022
$3.1M
Positive Airway Pressure For The Treatment Of The Obstructive Sleep Apnea Syndrome In Children With Down SyndromeR33HL151253 · NHLBI · UNIVERSITY OF MIAMI SCHOOL OF MEDICINE · PI TAPIA, IGNACIO ESTEBAN · 2021 to 2023
$3.0M
Impact of Well-Timed vs. Mis-timed Sleep Extension on Adolescents’ Dietary IntakeR01HL147915 · NHLBI · CINCINNATI CHILDRENS HOSP MED CTR · PI BEEBE, DEAN W. · 2020 to 2023
$2.8M
Investigating socio-ecological factors in pediatric sleep-related health disparitiesR01HL152454 · NHLBI · UNIVERSITY OF MIAMI SCHOOL OF MEDICINE · PI TAPIA, IGNACIO ESTEBAN · 2020 to 2024
$2.8M
Evaluating Assessment and Medication Treatment of ADHD in Children with Down SyndromeR61HD100934 · NICHD · CINCINNATI CHILDRENS HOSP MED CTR · PI ESBENSEN, ANNA J., FROEHLICH, TANYA E. · 2019 to 2021
$1.5M
ACL HHS U01DD001279NCATS NIH HHS UL1 TR001425NCBDD CDC HHS U01 DD001279NHLBI NIH HHS K01 HL130719NHLBI NIH HHS R01 HL147915NHLBI NIH HHS R01 HL152454NHLBI NIH HHS R33 HL151253NHLBI NIH HHS R61 HL151253NIAID NIH HHS K24 AI146137NICHD NIH HHS R01 HD093654NICHD NIH HHS R01 HD093754NICHD NIH HHS R01 HD099150NICHD NIH HHS R21 HD101003NICHD NIH HHS R61 HD100934NIDCR NIH HHS U01 DE029750NIMH NIH HHS P30 MH097488NIMH NIH HHS P50 MH113840NIMH NIH HHS R01 MH108548
6 · The paper itself

Abstract

BACKGROUND/

objectiveWhile positive airway pressure (PAP) is an efficacious intervention for the treatment of obstructive sleep apnea syndrome (OSAS) in children with Down syndrome (DS), implementation and consistent use can be difficult. Caregiver perspectives and experiences using PAP are described with the aim of informing clinical practice.

methodsQualitative semi-structured phone interviews were conducted with 40 caregivers (i.e., mothers) of children with DS and OSAS treated with PAP for at least 6 months. Content analysis was used to identify themes associated with adherence and non-adherence.

resultsRespondents indicated variability in caregiver experience with the adoption of PAP and observed benefits of PAP. Varied experiences were attributed to several themes including accessing supplies, interactions with the medical team and equipment company, and patients' unique needs and behaviors, including the child's willingness and ability to adapt to PAP, sensory sensitivities, keeping the mask on all night, and differences in daytime behavior. Many families reported that desensitization with a reward system and trust within the caregiver-patient relationship were helpful. Caregiver suggestions for improving PAP adherence for families of children with DS included improving communication with the medical team and medical equipment company, emphasizing patience, using visual supports, and social support and education for extended family.

conclusionsAlthough family experiences varied, several actionable strategies by both the medical team and families emerged for improving the experience of and adherence to PAP in children with DS.

Indexed as

Down SyndromeSleep Apnea, ObstructiveCaregiversChildContinuous Positive Airway PressureHumansPatient ComplianceAdherenceDown syndromeObstructive sleep apnea syndromePediatricPositive airway pressure

Identifiers

PMID37196396
PMCPMC10330846
OpenAlexW4367311074

What OpenQuestion holds

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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.