Evidence map›Paper›PMID 26998310›Full record

ArticleCanadian journal of kidney health and disease2016

Parental attitudes to genetic testing differ by ethnicity and immigration in childhood nephrotic syndrome: a cross-sectional study.

Karlota Borges, Jovanka Vasilevska-Ristovska, Neesha Hussain-Shamsy, Viral Patel, Tonny Banh, Diane Hebert, Rachel J Pearl, Seetha Radhakrishnan, Tino D Piscione, Christoph P B Licht and 4 more

Registry-linked trialOpen access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Canadian journal of kidney health and disease, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT01605266 (INSIGHT), which is not on this map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact, top 99% 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.

NCT01605266 recruitingnot on this map

INSIGHT (Insight Into Nephrotic Syndrome: Investigating Genes, Health and Therapeutics)

TypeobservationalSponsorThe Hospital for Sick ChildrenRan2011 to 2032Enrolled1,000ConditionsNephrotic Syndrome
3 · Its place in the literature

Who cites it

0 citing papers in PubMed, 1 citations in OpenAlex.

No citing paper in PubMed yet.

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

14 authors at 4 institutions in 1 country.

Karlota BorgesChild Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada.
Jovanka Vasilevska-RistovskaChild Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada.
Neesha Hussain-ShamsyChild Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada.
Viral PatelChild Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada.
Tonny BanhChild Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada.
Diane HebertDivision of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada ; University of Toronto, Toronto, Canada.
Rachel J PearlDivision of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada ; University of Toronto, Toronto, Canada.
Seetha RadhakrishnanDivision of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada.
Tino D PiscioneDivision of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada ; University of Toronto, Toronto, Canada.
Christoph P B LichtDivision of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada ; University of Toronto, Toronto, Canada.
Valerie LangloisDivision of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada ; University of Toronto, Toronto, Canada.
Leo LevinDivision of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada.
Lisa StrugChild Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada ; Dalla Lana School of Public Health, Toronto, Canada.
Rulan S ParekhChild Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada ; Division of Nephrology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Canada ; University of Toronto, Toronto, Canada ; Dalla Lana School of Public Health, Toronto, Canada.
Hospital for Sick Children · CAUniversity of Toronto · CASickKids Foundation · CAInstitute for Clinical Evaluative Sciences · CA

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundStudies in the USA report differences in opinion among parents of different ethnic groups toward genetic testing for their child; however, there are no studies that address this issue in the diverse ethnic and immigrant population in Canada.

objectiveThis study aims to determine whether ethnicity and immigration status influences parental interest in clinical genetic testing for a potentially progressive kidney disease.

designThis is a cross-sectional study.

settingParticipants were recruited from the Greater Toronto Area, Canada.

participantsThe study included 320 parents of children ages 1-18 years with nephrotic syndrome enrolled in the Insight into Nephrotic Syndrome: Investigating Genes, Health and Therapeutics (INSIGHT) observational cohort study. MEASUREMENTS: Demographic, ethnicity, immigration, and child specific factors as well as interest in genetic testing were collected through self-reported questionnaires administered at baseline study visit.

methodsLogistic regression models were used to examine association of ethnicity and immigration status with interest in genetic testing.

resultsThe majority of parents (85 %) were interested in genetic testing for their child. South Asian and East/Southeast Asian parents had 74 and 76 % lower odds of agreeing to genetic testing when compared to Europeans (odds ratio (OR) 0.26, 95 % confidence interval (CI) 0.10-0.68; OR 0.24, 95 % CI 0.07-0.79, respectively) after controlling for age and sex of child, age and education level of parent, initial steroid resistance, and duration of time in Canada. Immigrants to Canada also had significantly lower odds (OR 0.29, 95 % CI 0.12-0.72) of agreeing to genetic testing after similar adjustment. Higher education level was not associated with greater interest in genetic testing (OR 1.24, 95 % CI 0.64-2.42). LIMITATIONS: Participants have already agreed to aggregate genetic testing for research purposes as part of enrolment in INSIGHT study.

conclusionWhile majority of parents were interested in genetic testing for their child, immigrants, particularly South Asians and East/Southeast Asians, were more likely to decline genetic testing. Genetic counseling needs to be tailored to address specific concerns in these parental groups to maximize informed decision-making in the clinical setting.

trial registrationClinicalTrials.gov, NCT01605266.

Indexed as

CaregiverDecision-makingGenetic testingNephrotic syndromePediatricSteroid resistant nephrotic syndrome

Identifiers

PMID26998310
PMCPMC4797354
OpenAlexW2300682580

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

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.