Evidence map›Paper›PMID 34668664›Full record

ArticleMolecular genetics & genomic medicine2021

Predictors of empowerment in parents of children with autism and related neurodevelopmental disorders who are undergoing genetic testing.

Iskra Peltekova, Afiqah Yusuf, Jennifer Frei, Tal Savion-Lemieux, Ridha Joober, Jennifer Howe, Stephen W Scherer, Mayada Elsabbagh

Open access · goldAbstract readEvaluation Study
In one paragraph

Article in Molecular genetics & genomic medicine, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
0.3field-weighted citation impact, top 35% 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

3 citing papers in PubMed, 3 citations in OpenAlex.

  1. Article
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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

8 authors at 5 institutions in 1 country.

Iskra PeltekovaMcGill University Health Centre, Montreal, Quebec, Canada.ORCID 0000-0002-9434-5418
Afiqah YusufMcGill University Health Centre, Montreal, Quebec, Canada.ORCID 0000-0003-3092-3095
Jennifer FreiMcGill University Health Centre, Montreal, Quebec, Canada.
Tal Savion-LemieuxMcGill University Health Centre, Montreal, Quebec, Canada.
Ridha JooberDouglas Mental Health University Institute, Department of Psychiatry, McGill University, Montreal, Quebec, Canada.
Jennifer HoweThe Centre for Applied Genomics, The Hospital for Sick Children, Toronto, Ontario, Canada.
Stephen W SchererThe Centre for Applied Genomics, The Hospital for Sick Children, Toronto, Ontario, Canada.
Mayada ElsabbaghMcGill University Health Centre, Montreal, Quebec, Canada.
McGill University Health Centre · CAMontreal Neurological Institute and Hospital · CADouglas Mental Health University Institute · CAHospital for Sick Children · CAUniversity of Toronto · CA

Funding

CIHR
6 · The paper itself

Abstract

backgroundThere is limited empirical data quantifying the utility of genetic testing for families of children with autism spectrum disorder (ASD) or related neurodevelopmental disorders (NDD). We assessed the utility of clinical chromosomal microarray analysis (CMA), defined by diagnostic yield and parental empowerment, in population-based sample of parents of affected children; and explored child, family, and health services factors predictive of empowerment.

methodsParticipants were families of children undergoing diagnostic assessments, between 2016 and 2019. Diagnostic yield of CMA in affected children was determined. Parental empowerment was measured through adapted version of the Genetics Counseling Outcome Scale-24. Parents completed questionnaires to capture child, family, and health service factors.

resultsThe diagnostic yield of CMA was 2.8% for pathogenic variants. Parental empowerment was significantly correlated with family functioning and aspects of perceived family-centeredness of care. The model accounted for 49.8% of the variation in parental empowerment, F (10,37) = 3.67, p = 0.002. After accounting for other predictors, parental perception of the provision of general information remained significantly associated with empowerment.

conclusionThe informational needs of families play an important role in their empowerment during genetic testing. Meeting these needs and monitoring empowerment can aid genomic technologies integration in personalized healthcare for ASD/NDD.

Indexed as

EmpowermentAdolescentAutistic DisorderChildDevelopmental DisabilitiesFemaleGenetic CounselingGenetic TestingHumansMaleParentsPatient Participationautism spectrum disorderempowermentgenetic testingneurodevelopmental disorders

Identifiers

PMID34668664
PMCPMC8606197
OpenAlexW3207441619

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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.