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

Authors

Andrea J. Chow, University of Ottawa
Michael Pugliese, University of Ottawa
Laure A. Tessier, Children's Hospital of Eastern Ontario, Ottawa
Pranesh Chakraborty, Children's Hospital of Eastern Ontario, Ottawa
Ryan Iverson, University of Ottawa
Doug Coyle, University of Ottawa
Jonathan B. Kronick, Hospital for Sick Children University of Toronto
Kumanan Wilson, Ottawa Hospital Research Institute
Robin Hayeems, Hospital for Sick Children University of Toronto
Walla Al-Hertani, Children's Hospital Boston
Michal Inbar-Feigenberg, Hospital for Sick Children University of Toronto
Shailly Jain-Ghai, University of Alberta
Anne Marie Laberge, CHU Sainte-Justine - Le Centre Hospitalier Universitaire Mère-Enfant
Julian Little, University of Ottawa
John J. Mitchell, Centre Universitaire de Santé McGill, Hôpital de Montreal Pour Enfants
Chitra Prasad, Western UniversityFollow
Komudi Siriwardena, University of Alberta
Rebecca Sparkes, University of Calgary
Kathy N. Speechley, Western UniversityFollow
Sylvia Stockler, The University of British Columbia
Yannis Trakadis, Centre Universitaire de Santé McGill, Hôpital de Montreal Pour Enfants
Jagdeep S. Walia, Queen’s University
Brenda J. Wilson, Memorial University of Newfoundland
Beth K. Potter, University of Ottawa

Document Type

Article

Publication Date

3-1-2022

Journal

Patient

Volume

15

Issue

2

First Page

171

Last Page

185

URL with Digital Object Identifier

10.1007/s40271-021-00538-8

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.