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Chow AJ, Pugliese M, Tessier LA, et al. Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey. Patient. 2021;doi: 10.1007/s40271-021-00538-8.
Chow, A. J., Pugliese, M., Tessier, L. A., Chakraborty, P., Iverson, R., Coyle, D., Kronick, J. B., Wilson, K., Hayeems, R., Al-Hertani, W., Inbar-Feigenberg, M., Jain-Ghai, S., Laberge, A. M., Little, J., Mitchell, J. J., Prasad, C., Siriwardena, K., Sparkes, R., Speechley, K. N., Stockler, S., Trakadis, Y., Walia, J. S., Wilson, B. J., & Potter, B. K. (2021). Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey. The patient, . https://doi.org/10.1007/s40271-021-00538-8
Chow, Andrea J, et al. "Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey." The patient vol. (2021). doi: https://doi.org/10.1007/s40271-021-00538-8
Chow AJ, Pugliese M, Tessier LA, Chakraborty P, Iverson R, Coyle D, Kronick JB, Wilson K, Hayeems R, Al-Hertani W, Inbar-Feigenberg M, Jain-Ghai S, Laberge AM, Little J, Mitchell JJ, Prasad C, Siriwardena K, Sparkes R, Speechley KN, Stockler S, Trakadis Y, Walia JS, Wilson BJ, Potter BK. Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey. Patient. 2021 Jul 20; doi: 10.1007/s40271-021-00538-8. Epub 2021 Jul 20. PMID: 34282509; PMCID: PMC8289623.
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Patient. 2021 Jul 20; doi: 10.1007/s40271-021-00538-8. Epub 2021 Jul 20.

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

The patient

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, Beth K Potter

Affiliations

  1. School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Cres, Office 207C, Ottawa, ON, K1G 5Z3, Canada.
  2. Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.
  3. Department of Pediatrics, University of Ottawa, Ottawa, ON, Canada.
  4. Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON, Canada.
  5. Department of Medicine, University of Ottawa and Ottawa Hospital Research Institute, Ottawa, ON, Canada.
  6. Program in Child Health Evaluative Sciences, The Hospital for Sick Children and University of Toronto, Toronto, ON, Canada.
  7. Division of Genetics and Genomics, Boston Children's Hospital and Harvard Medical School, Boston, MA, USA.
  8. University of Alberta, Stollery Children's Hospital, Edmonton, AB, Canada.
  9. Medical Genetics, Department of Pediatrics, CHU Sainte-Justine and Université de Montréal, Montreal, QC, Canada.
  10. McGill University Health Centre, The Montreal Children's Hospital, Montreal, QC, Canada.
  11. Genetics, Metabolism and Paediatrics, London Health Sciences Centre, Western University, London, ON, Canada.
  12. University of Calgary, Alberta Children's Hospital, Calgary, AB, Canada.
  13. Department of Paediatrics, Western University, London, ON, Canada.
  14. University of British Columbia, BC Children's Hospital, Vancouver, BC, Canada.
  15. Medical Genetics, Department of Pediatrics, Kingston Health Sciences Centre and Queen's University, Kingston, ON, Canada.
  16. Division of Community Health and Humanities, Memorial University, St. John's, NL, Canada.
  17. School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Cres, Office 207C, Ottawa, ON, K1G 5Z3, Canada. [email protected].

PMID: 34282509 PMCID: PMC8289623 DOI: 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.

© 2021. The Author(s).

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