Evidence map›Paper›PMID 38638125›Full record

ArticleGlobal heart2024

Quality of Life in Ugandan Children and Young Adults After Surgery for Congenital Heart Disease: Mixed Methods Approach.

Chloe Searchinger, Hadija Nalubwama, Jafesi Pulle, Rittal Mehta, Hilda Tumwbaze, Rachel Kyarimpa, Rachel Mwima, Emily Atukunda, Bobson Bua, Rachel Sarnacki and 9 more

Open access · goldAbstract read
In one paragraph

Article in Global heart, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
1.2field-weighted citation impact, top 22% 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

2 citing papers in PubMed, 3 citations in OpenAlex.

  1. Review
  2. Assessment of the financial gaps in cardiothoracic surgery in Africa.Interdisciplinary cardiovascular and thoracic surgery · 2024
    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

19 authors at 5 institutions in 2 countries.

Chloe SearchingerPrinceton University, Princeton, NJ, USA.ORCID 0000-0002-3278-3404
Hadija NalubwamaUganda Heart Institute, Kampala, Uganda.ORCID 0000-0003-4824-8841
Jafesi PulleUganda Heart Institute, Kampala, Uganda.ORCID 0000-0001-7955-3481
Rittal MehtaDivision of Cardiology and Global Health Initiative, Children's National Hospital, Washington, DC, USA.
Hilda TumwbazeUganda Heart Institute, Kampala, Uganda.
Rachel KyarimpaUganda Heart Institute, Kampala, Uganda.
Rachel MwimaUganda Heart Institute, Kampala, Uganda.
Emily AtukundaUganda Heart Institute, Kampala, Uganda.
Bobson BuaUganda Heart Institute, Kampala, Uganda.ORCID 0000-0002-2716-6356
Rachel SarnackiDivision of Cardiology and Global Health Initiative, Children's National Hospital, Washington, DC, USA.ORCID 0000-0001-9137-7476
Meredith G ShermanDivision of Cardiology and Global Health Initiative, Children's National Hospital, Washington, DC, USA.ORCID 0000-0003-4792-6903
Michael OketchoUganda Heart Institute, Kampala, Uganda.ORCID 0000-0002-6595-795X
Meghan ZimmermanChildren's Hospital at Dartmouth-Hitchcock, NH, USA.ORCID 0000-0001-7311-8278
Miriam NakittoUganda Heart Institute, Kampala, Uganda.
Chris T LongeneckerDivision of Cardiology and Department of Global Health University of Washington School of Medicine, Seattle WA, USA.ORCID 0000-0002-9468-0179
Allison WebelUniversity of Washington School of Nursing, Seattle WA, USA.ORCID 0000-0002-7538-5780
Amy ScheelChildren's Hospital of Philadelphia, Philadelphia, PA, USA.ORCID 0000-0001-6871-1552
Peter S LwabiUganda Heart Institute, Kampala, Uganda.ORCID 0000-0002-2895-3626
Craig A SableDivision of Cardiology and Global Health Initiative, Children's National Hospital, Washington, DC, USA.ORCID 0000-0002-6798-2737
Uganda Management Institute · UGChildren's National · USUniversity of Washington · USChildren's Hospital at Dartmouth Hitchcock · USChildren's Hospital of Philadelphia · US

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: Health-related quality of life (HRQOL) is a critical issue for patients undergoing surgery for congenital heart disease (CHD) but has never been assessed in a low-income country. We conducted a cross-sectional mixed methods study with age-matched healthy siblings serving as controls at the Uganda Heart Institute. Methods: One-hundred fifteen CHD pediatric and young adult patients and sibling control participants were recruited. Health-related quality of life was assessed using the Pediatric Quality of Life Inventory Version 4.0 in participants ages 5-17 and 36-Item Short Form Survey for young adults aged 18-25. A subset of 27 participants completed face-to-face interviews to supplement quantitative findings. Results: Eighty-six pediatric (age 5-17) sibling and parent pairs completed Peds QOL surveys, and 29 young adult (age 18-25) sibling pairs completed SF-36 surveys. One third of patients had surgery in Uganda. Ventricular septal defects and tetralogy of Fallot were the most common diagnoses. Health-related quality of life scores in patients were lower across all domains compared to control participants in children. Reductions in physical and emotional domains of HRQOL were also statistically significant for young adults. Variables associated with lower HRQOL score on multivariate analysis in pediatric patients were younger age in the physical and emotional domains, greater number of surgeries in the physical domain and surgery outside Uganda in the school domain. The only predictor of lower HRQOL score in young adults was surgery outside Uganda in the social domain. Qualitative interviews identified a number of themes that correlated with survey results including abandonment by family, isolation from peers and community, financial hardship and social stigmatization. Conclusion: Health-related quality of life was lower in Ugandan patients after CHD surgery than siblings. Younger patients and those who had surgery outside of Uganda had lower HRQOL. These data have important implications for patients undergoing CHD surgery in LMIC and have potential to inform interventions.

Indexed as

Heart Defects, CongenitalQuality of LifeAdolescentAdultChildChild, PreschoolCross-Sectional StudiesHealth StatusHumansSurveys and QuestionnairesUgandaYoung Adultcongenital heart defectHealth-related quality of lifeLow-income country

Identifiers

PMID38638125
PMCPMC11025577
OpenAlexW4394880837

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.