Evidence map›Paper›PMID 35193919›Full record

ArticleBMJ open2022

Families' healthcare experiences for children with inherited metabolic diseases: protocol for a mixed methods cohort study.

Andrea J Chow, Ryan Iverson, Monica Lamoureux, Kylie Tingley, Isabel Jordan, Nicole Pallone, Maureen Smith, Zobaida Al-Baldawi, Pranesh Chakraborty, Jamie Brehaut and 33 more

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMJ open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
0.4field-weighted citation impact, top 40% 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

1 citing paper in PubMed, 1 citations in OpenAlex.

  1. 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

43 authors at 19 institutions in 3 countries.

Andrea J ChowSchool of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.ORCID 0000-0003-1683-2912
Ryan IversonChildren's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
Monica LamoureuxChildren's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
Kylie TingleySchool of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
Isabel JordanPatient Partner, Squamish, British Columbia, Canada.
Nicole PallonePatient Partner, Canadian PKU & Allied Disorders Inc, Toronto, Ontario, Canada.
Maureen SmithPatient Partner, Canadian Organization for Rare Disorders, Toronto, Ontario, Canada.
Zobaida Al-BaldawiSchool of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
Pranesh ChakrabortyChildren's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
Jamie BrehautSchool of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
Alicia ChanDepartment of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada.
Eyal CohenDepartment of Pediatrics, University of Toronto, Toronto, Ontario, Canada.ORCID 0000-0003-0112-7188
Sarah DyackDivision of Medical Genetics, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
Lisa Jane GillisDepartment of Medicine, Johns Hopkins All Children's Hospital, St Petersburg, Florida, USA.
Sharan GoobieDivision of Medical Genetics, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
Ian D GrahamSchool of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
Cheryl R GreenbergRady Faculty of Health Sciences, Max Rady College of Medicine, Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Manitoba, Canada.
Jeremy M GrimshawClinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
Robin Z HayeemsChild Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada.ORCID 0000-0003-3269-8004
Shailly Jain-GhaiDepartment of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada.
Ann JollySchool of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
Sara KhanguraSchool of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
Jennifer J MacKenzieHamilton Health Sciences, McMaster Children's Hospital, Hamilton, Ontario, Canada.
Nathalie MajorChildren's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
John J MitchellDivision of Pediatric Endocrinology, Department of Pediatrics, Montreal Children's Hospital, Montreal, Quebec, Canada.
Stuart G NichollsClinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
Amy PenderHamilton Health Sciences, McMaster Children's Hospital, Hamilton, Ontario, Canada.
Murray PotterHamilton Health Sciences, McMaster Children's Hospital, Hamilton, Ontario, Canada.
Chitra PrasadDepartment of Pediatrics, Western University, London, Ontario, Canada.
Lisa A ProsserDepartment of Pediatrics, Susan B. Meister Child Health Evaluation and Research Center, University of Michigan, Ann Arbor, Michigan, USA.
Andreas SchulzeDepartment of Pediatrics, University of Toronto, Toronto, Ontario, Canada.
Komudi SiriwardenaDepartment of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada.
Rebecca SparkesDepartments of Medical Genetics and Pediatrics, Alberta Children's Hospital, Calgary, Alberta, Canada.
Kathy SpeechleyDepartment of Pediatrics, Western University, London, Ontario, Canada.
Sylvia StocklerDepartment of Pediatrics, BC Children's Hospital, Vancouver, British Columbia, Canada.
Monica TaljaardSchool of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.ORCID 0000-0002-3978-8961
Mari TeitelbaumChildren's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
Yannis TrakadisDepartment of Specialized Medicine, Division of Medical Genetics, McGill University Health Centre, Montreal, Quebec, Canada.
Clara van KarnebeekDepartment of Pediatrics, Radboud University Medical Center, Nijmegen, Gelderland, The Netherlands.
Jagdeep S WaliaMedical Genetics, Department of Pediatrics, Kingston Health Sciences Centre, Kingston, Ontario, Canada.
Brenda J WilsonFaculty of Medicine Division of Community Health and Humanities, Memorial University of Newfoundland, St. John's, Newfoundland, Canada.
Kumanan WilsonSchool of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
Beth K PotterSchool of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada Beth.potter@uottawa.ca.
University of Ottawa · CAChildren's Hospital of Eastern Ontario · CAMcMaster Children's Hospital · CAUniversity of Alberta · CAUniversity of Toronto · CADalhousie University · CAWestern University · CAAlberta Children's Hospital · CABC Children's Hospital · CAChildren's Hospital Research Institute of Manitoba · CAJohns Hopkins University · USMcGill University Health Centre · CAMemorial University of Newfoundland · CAMontreal Children's Hospital · CAOttawa Hospital · CAQueen's University · CARadboud University Nijmegen · NLSquamish Nation · CAUniversity of Michigan · US

Funding

CIHR PJT-153230
6 · The paper itself

Abstract

introductionChildren with inherited metabolic diseases (IMDs) often have complex and intensive healthcare needs and their families face challenges in receiving high-quality, family centred health services. Improvement in care requires complex interventions involving multiple components and stakeholders, customised to specific care contexts. This study aims to comprehensively understand the healthcare experiences of children with IMDs and their families across Canada. METHODS AND ANALYSIS: A two-stage explanatory sequential mixed methods design will be used. ETHICS AND DISSEMINATION: The study protocol and procedures were approved by the Children's Hospital of Eastern Ontario's Research Ethics Board, the University of Ottawa Research Ethics Board and the research ethics boards of each participating study centre. Findings will be published in peer-reviewed journals and presented at scientific conferences.

Indexed as

Delivery of Health CareMetabolic DiseasesChildCohort StudiesHealth FacilitiesHumansParentsepidemiologygeneticspaediatricsquality in health carestatistics & research methods

Identifiers

PMID35193919
PMCPMC8867352
OpenAlexW4213002216

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.