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, Michal Inbar-Feigenberg, Shailly Jain-Ghai, Anne-Marie Laberge, Julian Little, John J. Mitchell, Chitra Prasad, Komudi Siriwardena, Rebecca Sparkes, Kathy N. Speechley, Sylvia Stockler, Yannis Trakadis, Jagdeep S. Walia, Brenda J. Wilson and Beth K. Potter ()
Additional contact information
Andrea J. Chow: University of Ottawa
Michael Pugliese: University of Ottawa
Laure A. Tessier: Children’s Hospital of Eastern Ontario
Pranesh Chakraborty: Children’s Hospital of Eastern Ontario
Ryan Iverson: University of Ottawa
Doug Coyle: University of Ottawa
Jonathan B. Kronick: The Hospital for Sick Children
Kumanan Wilson: University of Ottawa and Ottawa Hospital Research Institute
Robin Hayeems: The Hospital for Sick Children and University of Toronto
Walla Al-Hertani: Boston Children’s Hospital and Harvard Medical School
Michal Inbar-Feigenberg: The Hospital for Sick Children
Shailly Jain-Ghai: University of Alberta, Stollery Children’s Hospital
Anne-Marie Laberge: CHU Sainte-Justine and Université de Montréal
Julian Little: University of Ottawa
John J. Mitchell: McGill University Health Centre, The Montreal Children’s Hospital
Chitra Prasad: London Health Sciences Centre, Western University
Komudi Siriwardena: University of Alberta, Stollery Children’s Hospital
Rebecca Sparkes: University of Calgary, Alberta Children’s Hospital
Kathy N. Speechley: Western University
Sylvia Stockler: University of British Columbia, BC Children’s Hospital
Yannis Trakadis: McGill University Health Centre, The Montreal Children’s Hospital
Jagdeep S. Walia: Kingston Health Sciences Centre and Queen’s University
Brenda J. Wilson: Memorial University
Beth K. Potter: University of Ottawa

The Patient: Patient-Centered Outcomes Research, 2022, vol. 15, issue 2, No 4, 185 pages

Abstract: Abstract Background and Objective Children 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. Methods A 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. Results There 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. Conclusions While 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.

Date: 2022
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DOI: 10.1007/s40271-021-00538-8

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