Evidence map›Paper›PMID 37126503›Full record

SynthesisPloS one2023

Quality of life in adults with Down syndrome: A mixed methods systematic review.

Ogochukwu Ann Ijezie, Jane Healy, Philip Davies, Emili Balaguer-Ballester, Vanessa Heaslip

Erratum issuedOpen access · goldAbstract readSystematic Review
In one paragraph

Synthesis in PloS one, 2023. 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 10 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
10citing papers in PubMed, 1 pooled it
8.7field-weighted citation impact, top 2% 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

10 citing papers in PubMed, 1 synthesis or guideline pooled it, 30 citations in OpenAlex.

  1. Pooled it
  2. Review
  3. Adaptive and Maladaptive Behaviours and Their Cognitive Correlates in Aging Adults With Down Syndrome.Journal of applied research in intellectual disabilities : JARID · 2026
    Article
  4. Article
  5. Review
  6. Article
  7. Article
  8. Review
  9. Article
  10. (In)Fertility in the Down syndrome.Revista da Associacao Medica Brasileira (1992) · 2024
    Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

5 authors at 3 institutions in 3 countries.

Ogochukwu Ann IjezieDepartment of Computing and Informatics, Bournemouth University, Poole, United Kingdom.ORCID 0000-0002-8523-1486
Jane HealyDepartment of Social Science and Social Work, Bournemouth University, Lansdowne, United Kingdom.ORCID 0000-0002-3646-0565
Philip DaviesDepartment of Computing and Informatics, Bournemouth University, Poole, United Kingdom.
Emili Balaguer-BallesterDepartment of Computing and Informatics, Bournemouth University, Poole, United Kingdom.ORCID 0000-0002-0695-7191
Vanessa HeaslipSchool of Health and Society, University of Salford, Manchester, United Kingdom.ORCID 0000-0003-2037-4002
Bournemouth University · GBHeidelberg University · DEUniversity of Salford · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundAs the life expectancy of adults (aged ≥ 18 years) with Down syndrome increases for a plethora of reasons including recognition of rights, access, and technological and medical advances, there is a need to collate evidence about their quality of life.

objectiveUsing Schalock and Verdugo's multidimensional quality of life assessment model, this systematic review aimed to identify, synthesise and integrate the quantitative and qualitative evidence on quality of life in adults with Down syndrome via self-and proxy-reporting.

methodsFive databases were systematically searched: MEDLINE, CINAHL, PsycINFO, Scopus, and Web of Science to identify relevant articles published between 1980 and 2022 along with grey literature and reference lists from relevant studies. A mixed methods systematic review was performed according to the Joanna Briggs Institute methodology using the convergent integrated approach. The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.

resultsThirty-nine studies were included: 20 quantitative, 17 qualitative, and 2 mixed methods studies. The synthesised findings were grouped into the 8 core domains of quality of life: personal development, self-determination, interpersonal relations, social inclusion, rights, emotional, physical and material well-being. Of the 39 studies, 30 (76.92%) reported on emotional well-being and 10 (25.64%) on rights. Only 7 (17.94%) studies reported that adults with Down syndrome have a good quality of life centred around self-determination and interpersonal relations. Most adults with Down syndrome wanted to become more independent, have relationships, participate in the community, and exercise their human rights. Self-reported quality of life from adults with Down syndrome was rated higher than proxy reported quality of life. Discrepancies in quality of life instruments were discovered.

conclusionThis review highlighted the need for a better systematic approach to improving the quality of life in adults with Down syndrome in targeted areas. Future research is required to evaluate self-and proxy-reporting methods and culture-specific quality of life instruments that are more appropriate for adults with Down syndrome. In addition, further studies should consider including digital assistive technologies to obtain self-reported quality of life data in adults with Down syndrome. INTERNATIONAL PROSPECTIVE REGISTER OF SYSTEMATIC REVIEWS REGISTRATION NUMBER: CRD42019140056.

Indexed as

Down SyndromeQuality of LifeAdultExerciseHumans

Identifiers

PMID37126503
PMCPMC10150991
OpenAlexW4367597896

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.