Evidence map›Paper›PMID 34282509›Full record

ArticleThe patient2022

Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey.

Andrea J Chow, Michael Pugliese, Laure A Tessier, Pranesh Chakraborty, Ryan Iverson, Doug Coyle, Jonathan B Kronick, Kumanan Wilson, Robin Hayeems, Walla Al-Hertani and 14 more

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

Article in The patient, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
0.6field-weighted citation impact, top 28% 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

0 citing papers in PubMed, 2 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

24 authors at 13 institutions in 2 countries.

Andrea J ChowSchool of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Cres, Office 207C, Ottawa, ON, K1G 5Z3, Canada.
Michael PuglieseSchool of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Cres, Office 207C, Ottawa, ON, K1G 5Z3, Canada.
Laure A TessierChildren's Hospital of Eastern Ontario, Ottawa, ON, Canada.
Pranesh ChakrabortyChildren's Hospital of Eastern Ontario, Ottawa, ON, Canada.
Ryan IversonSchool of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Cres, Office 207C, Ottawa, ON, K1G 5Z3, Canada.
Doug CoyleSchool of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Cres, Office 207C, Ottawa, ON, K1G 5Z3, Canada.
Jonathan B KronickDivision of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON, Canada.
Kumanan WilsonDepartment of Medicine, University of Ottawa and Ottawa Hospital Research Institute, Ottawa, ON, Canada.
Robin HayeemsProgram in Child Health Evaluative Sciences, The Hospital for Sick Children and University of Toronto, Toronto, ON, Canada.
Walla Al-HertaniDivision of Genetics and Genomics, Boston Children's Hospital and Harvard Medical School, Boston, MA, USA.
Michal Inbar-FeigenbergDivision of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON, Canada.
Shailly Jain-GhaiUniversity of Alberta, Stollery Children's Hospital, Edmonton, AB, Canada.
Anne-Marie LabergeMedical Genetics, Department of Pediatrics, CHU Sainte-Justine and Université de Montréal, Montreal, QC, Canada.
Julian LittleSchool of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Cres, Office 207C, Ottawa, ON, K1G 5Z3, Canada.
John J MitchellMcGill University Health Centre, The Montreal Children's Hospital, Montreal, QC, Canada.
Chitra PrasadGenetics, Metabolism and Paediatrics, London Health Sciences Centre, Western University, London, ON, Canada.
Komudi SiriwardenaUniversity of Alberta, Stollery Children's Hospital, Edmonton, AB, Canada.
Rebecca SparkesUniversity of Calgary, Alberta Children's Hospital, Calgary, AB, Canada.
Kathy N SpeechleyDepartment of Paediatrics, Western University, London, ON, Canada.
Sylvia StocklerUniversity of British Columbia, BC Children's Hospital, Vancouver, BC, Canada.
Yannis TrakadisMcGill University Health Centre, The Montreal Children's Hospital, Montreal, QC, Canada.
Jagdeep S WaliaMedical Genetics, Department of Pediatrics, Kingston Health Sciences Centre and Queen's University, Kingston, ON, Canada.
Brenda J WilsonDivision of Community Health and Humanities, Memorial University, St. John's, NL, Canada.
Beth K PotterSchool of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Cres, Office 207C, Ottawa, ON, K1G 5Z3, Canada. bpotter@uottawa.ca.ORCID 0000-0001-8374-6542
University of Ottawa · CAHospital for Sick Children · CAMontreal Children's Hospital · CAUniversity of Alberta · CAWestern University · CABoston Children's Hospital · USCentre Hospitalier Universitaire Sainte-Justine · CAChildren's Hospital of Eastern Ontario · CAMemorial University of Newfoundland · CAQueen's University · CAUniversity of British Columbia · CAUniversity of Calgary · CAUniversity of Toronto · CA

Funding

CIHR TR3–119195
6 · The paper itself

Abstract

BACKGROUND AND

objectiveChildren with inherited metabolic diseases often require complex and highly specialized care. Patient and family-centered care can improve health outcomes that are important to families. This study aimed to examine experiences of family caregivers (parents/guardians) of children diagnosed with inherited metabolic diseases with healthcare to inform strategies to improve those experiences.

methodsA cross-sectional mailed survey was conducted of family caregivers recruited from an ongoing cohort study. Participants rated their healthcare experiences during their child's visits to five types of healthcare settings common for inherited metabolic diseases: the metabolic clinic, the emergency department, hospital inpatient units, the blood laboratory, and the pharmacy. Participants provided narrative descriptions of any memorable negative or positive experiences.

resultsThere were 248 respondents (response rate 49%). Caregivers were generally very or somewhat satisfied with the care provided at each care setting. Appropriate treatment, provider knowledge, provider communication, and care coordination were deemed essential aspects of satisfaction with care by the majority of participants across many settings. Memorable negative experiences were reported by 8-22% of participants, varying by setting. Among participants who reported memorable negative experiences, contributing factors included providers' demeanor, lack of communication, lack of involvement of the family, and disregard of an emergency protocol letter provided by the family.

conclusionsWhile caregivers' satisfaction with care for children with inherited metabolic diseases was high, we identified gaps in family-centered care and factors contributing to negative experiences that are important to consider in the future development of strategies to improve pediatric care for inherited metabolic diseases.

Indexed as

CaregiversMetabolic DiseasesChildCohort StudiesCross-Sectional StudiesFamilyHumansParents

Identifiers

PMID34282509
PMCPMC8289623
OpenAlexW3184816908

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.