Details
Title
Families’ healthcare experiences for children with inherited metabolic diseases: protocol for a mixed methods cohort study
Author
Chow, Andrea J 1
; Iverson, Ryan 2 ; Lamoureux, Monica 2 ; Tingley, Kylie 1 ; Jordan, Isabel 3 ; Pallone, Nicole 4 ; Smith, Maureen 5 ; Al-Baldawi, Zobaida 1 ; Chakraborty, Pranesh 6 ; Brehaut, Jamie 7 ; Chan, Alicia 8 ; Cohen, Eyal 9
; Dyack, Sarah 10 ; Gillis, Lisa Jane 11 ; Sharan Goobie 10 ; Graham, Ian D 7 ; Greenberg, Cheryl R 12 ; Grimshaw, Jeremy M 13 ; Hayeems, Robin Z 14
; Jain-Ghai, Shailly 8 ; Jolly, Ann 15 ; Khangura, Sara 1 ; MacKenzie, Jennifer J 16 ; Major, Nathalie 6 ; Mitchell, John J 17 ; Nicholls, Stuart G 18 ; Pender, Amy 16 ; Potter, Murray 19 ; Prasad, Chitra 20 ; Prosser, Lisa A 21 ; Schulze, Andreas 22 ; Siriwardena, Komudi 8 ; Sparkes, Rebecca 23 ; Speechley, Kathy 20 ; Stockler, Sylvia 24 ; Taljaard, Monica 7
; Teitelbaum, Mari 2 ; Trakadis, Yannis 25 ; Clara van Karnebeek 26 ; Walia, Jagdeep S 27 ; Wilson, Brenda J 28 ; Wilson, Kumanan 29 ; Potter, Beth K 1
1 School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada
2 Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada
3 Patient Partner, Squamish, British Columbia, Canada
4 Patient Partner, Canadian PKU & Allied Disorders Inc, Toronto, Ontario, Canada
5 Patient Partner, Canadian Organization for Rare Disorders, Toronto, Ontario, Canada
6 Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada; Department of Pediatrics, University of Ottawa, Ottawa, Ontario, Canada
7 School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada
8 Department of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada
9 Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada; Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada; Division of Pediatric Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada
10 Division of Medical Genetics, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada
11 Department of Medicine, Johns Hopkins All Children's Hospital, St Petersburg, Florida, USA
12 Rady Faculty of Health Sciences, Max Rady College of Medicine, Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Manitoba, Canada; Children's Hospital Research Institute of Manitoba, Winnipeg, Manitoba, Canada
13 Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada
14 Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
15 School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada; Contagion Consulting Group, Ottawa, Ontario, Canada
16 Hamilton Health Sciences, McMaster Children's Hospital, Hamilton, Ontario, Canada
17 Division of Pediatric Endocrinology, Department of Pediatrics, Montreal Children's Hospital, Montreal, Quebec, Canada
18 Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; Ottawa Methods Centre, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada
19 Hamilton Health Sciences, McMaster Children's Hospital, Hamilton, Ontario, Canada; Department of Pathology and Molecular Medicine, McMaster University, Hamilton, Ontario, Canada
20 Department of Pediatrics, Western University, London, Ontario, Canada
21 Department of Pediatrics, Susan B. Meister Child Health Evaluation and Research Center, University of Michigan, Ann Arbor, Michigan, USA
22 Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada; Department of Biochemistry, University of Toronto, Toronto, ON, Canada; Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, Ontario, Canada
23 Departments of Medical Genetics and Pediatrics, Alberta Children's Hospital, Calgary, Alberta, Canada
24 Department of Pediatrics, BC Children's Hospital, Vancouver, British Columbia, Canada
25 Department of Specialized Medicine, Division of Medical Genetics, McGill University Health Centre, Montreal, Quebec, Canada
26 Department of Pediatrics, Radboud University Medical Center, Nijmegen, Gelderland, The Netherlands; Department of Pediatrics, British Columbia Children's Hospital, Vancouver, British Columbia, Canada
27 Medical Genetics, Department of Pediatrics, Kingston Health Sciences Centre, Kingston, Ontario, Canada; Department of Pediatrics, Queen's University, Kingston, Ontario, Canada
28 Faculty of Medicine Division of Community Health and Humanities, Memorial University of Newfoundland, St. John's, Newfoundland, Canada
29 School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Bruyere Research Institute, Ottawa, Ontario, Canada
; Iverson, Ryan 2 ; Lamoureux, Monica 2 ; Tingley, Kylie 1 ; Jordan, Isabel 3 ; Pallone, Nicole 4 ; Smith, Maureen 5 ; Al-Baldawi, Zobaida 1 ; Chakraborty, Pranesh 6 ; Brehaut, Jamie 7 ; Chan, Alicia 8 ; Cohen, Eyal 9
; Dyack, Sarah 10 ; Gillis, Lisa Jane 11 ; Sharan Goobie 10 ; Graham, Ian D 7 ; Greenberg, Cheryl R 12 ; Grimshaw, Jeremy M 13 ; Hayeems, Robin Z 14
; Jain-Ghai, Shailly 8 ; Jolly, Ann 15 ; Khangura, Sara 1 ; MacKenzie, Jennifer J 16 ; Major, Nathalie 6 ; Mitchell, John J 17 ; Nicholls, Stuart G 18 ; Pender, Amy 16 ; Potter, Murray 19 ; Prasad, Chitra 20 ; Prosser, Lisa A 21 ; Schulze, Andreas 22 ; Siriwardena, Komudi 8 ; Sparkes, Rebecca 23 ; Speechley, Kathy 20 ; Stockler, Sylvia 24 ; Taljaard, Monica 7
; Teitelbaum, Mari 2 ; Trakadis, Yannis 25 ; Clara van Karnebeek 26 ; Walia, Jagdeep S 27 ; Wilson, Brenda J 28 ; Wilson, Kumanan 29 ; Potter, Beth K 1 1 School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada
2 Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada
3 Patient Partner, Squamish, British Columbia, Canada
4 Patient Partner, Canadian PKU & Allied Disorders Inc, Toronto, Ontario, Canada
5 Patient Partner, Canadian Organization for Rare Disorders, Toronto, Ontario, Canada
6 Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada; Department of Pediatrics, University of Ottawa, Ottawa, Ontario, Canada
7 School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada
8 Department of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada
9 Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada; Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada; Division of Pediatric Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada
10 Division of Medical Genetics, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada
11 Department of Medicine, Johns Hopkins All Children's Hospital, St Petersburg, Florida, USA
12 Rady Faculty of Health Sciences, Max Rady College of Medicine, Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Manitoba, Canada; Children's Hospital Research Institute of Manitoba, Winnipeg, Manitoba, Canada
13 Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada
14 Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada
15 School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada; Contagion Consulting Group, Ottawa, Ontario, Canada
16 Hamilton Health Sciences, McMaster Children's Hospital, Hamilton, Ontario, Canada
17 Division of Pediatric Endocrinology, Department of Pediatrics, Montreal Children's Hospital, Montreal, Quebec, Canada
18 Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; Ottawa Methods Centre, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada
19 Hamilton Health Sciences, McMaster Children's Hospital, Hamilton, Ontario, Canada; Department of Pathology and Molecular Medicine, McMaster University, Hamilton, Ontario, Canada
20 Department of Pediatrics, Western University, London, Ontario, Canada
21 Department of Pediatrics, Susan B. Meister Child Health Evaluation and Research Center, University of Michigan, Ann Arbor, Michigan, USA
22 Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada; Department of Biochemistry, University of Toronto, Toronto, ON, Canada; Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, Ontario, Canada
23 Departments of Medical Genetics and Pediatrics, Alberta Children's Hospital, Calgary, Alberta, Canada
24 Department of Pediatrics, BC Children's Hospital, Vancouver, British Columbia, Canada
25 Department of Specialized Medicine, Division of Medical Genetics, McGill University Health Centre, Montreal, Quebec, Canada
26 Department of Pediatrics, Radboud University Medical Center, Nijmegen, Gelderland, The Netherlands; Department of Pediatrics, British Columbia Children's Hospital, Vancouver, British Columbia, Canada
27 Medical Genetics, Department of Pediatrics, Kingston Health Sciences Centre, Kingston, Ontario, Canada; Department of Pediatrics, Queen's University, Kingston, Ontario, Canada
28 Faculty of Medicine Division of Community Health and Humanities, Memorial University of Newfoundland, St. John's, Newfoundland, Canada
29 School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Bruyere Research Institute, Ottawa, Ontario, Canada
First page
e055664
Section
Patient-centred medicine
Publication year
2022
Publication date
2022
e-ISSN
20446055
Source type
Scholarly Journal
Language of publication
English
ProQuest document ID
2685382316
Copyright
© 2022 Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/ This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ . Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.