. 2023 Jul 26;21(1):74.

doi: 10.1186/s12969-023-00849-0.

"I'd like more options!": Interviews to explore young people and family decision-making needs for pain management in juvenile idiopathic arthritis

Karine Toupin-April^{1

2

3

4}, Isabelle Gaboury⁵, Laurie Proulx⁶, Adam M Huber^{7

8}, Ciarán M Duffy^{9

10}, Esi M Morgan^{11

12}, Linda C Li^{13

14}, Elizabeth Stringer^{7

8}, Mark Connelly¹⁵, Jennifer E Weiss¹⁶, Michele Gibbon⁹, Hannah Sachs¹⁷, Aditi Sivakumar^{9

18}, Alexandra Sirois¹⁹, Emily Sirotich^{20

21}, Natasha Trehan²², Naomi Abrahams²³, Janice S Cohen^{9

24

25}, Sabrina Cavallo^{26

27

28}, Tania El Hindi²⁹, Marco Ragusa³⁰, France Légaré^{31

32}, William B Brinkman^{33

34}, Paul R Fortin^{35

36}, Simon Décary^{37

38}, Rebecca Lee^{39

40

41}, Sabrina Gmuca^{42

43}, Gail Paterson⁴⁴, Peter Tugwell^{45

46

47}, Jennifer N Stinson^{48

49}

Affiliations

¹ School of Rehabilitation Sciences, Faculty of Health Sciences, University of Ottawa, Ottawa, ON, Canada. ktoupina@uottawa.ca.
² Department of Pediatrics, Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada. ktoupina@uottawa.ca.
³ Children's Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada. ktoupina@uottawa.ca.
⁴ Institut du Savoir Montfort, Ottawa, ON, Canada. ktoupina@uottawa.ca.
⁵ Department of Family and Emergency Medicine, Faculty of Medicine and Health Sciences, Université de Sherbrooke, Longueuil, Québec, Canada.
⁶ Canadian Arthritis Patient Alliance, Ottawa, ON, Canada.
⁷ Division of Rheumatology, IWK Health Centre, Halifax, NS, Canada.
⁸ Department of Pediatrics, Dalhousie University, Halifax, NS, Canada.
⁹ Children's Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada.
¹⁰ Department of Pediatrics, Faculty of Medicine, Ottawa, ON, Canada.
¹¹ Division of Rheumatology, Seattle Children's Hospital, Seattle, Washington, USA.
¹² Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA.
¹³ Department of Physical Therapy, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada.
¹⁴ Arthritis Research Canada, Vancouver, BC, Canada.
¹⁵ Department of Pediatrics, Children's Mercy Kansas City, Kansas City, MO, USA.
¹⁶ Division of Rheumatology, Hackensack University Medical Center, Hackensack Meridian School of Medicine, Hackensack, NJ, USA.
¹⁷ Public Health Agency of Canada, Ottawa, ON, Canada.
¹⁸ Queen's University, ON, Ottawa, Canada.
¹⁹ Canadian Arthritis Patient Alliance, ON, Sudbury, Canada.
²⁰ Canadian Arthritis Patient Alliance, New Haven, CT, USA.
²¹ Yale University School of Medicine, New Haven, CT, USA.
²² University of Ottawa, Ottawa, ON, Canada.
²³ Faculty of Social Sciences, University of Ottawa, Ottawa, ON, Canada.
²⁴ Behavioural Neurosciences and Consultation Liaison Team, Mental Health, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.
²⁵ School of Psychology, Faculty of Social Sciences, University of Ottawa, ON, Ottawa, Canada.
²⁶ School of Rehabilitation, Faculty of Medicine, Université de Montréal, Montréal, QC, Canada.
²⁷ Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal, Montréal, QC, Canada.
²⁸ Research Centre of the Sainte-Justine University Hospital, Montreal, QC , Canada.
²⁹ Statistics Canada, Government of Canada, Ottawa, ON, Canada.
³⁰ The Ottawa Hospital, University of Ottawa, Ottawa, ON, Canada.
³¹ Department of Family and Emergency Medicine, Université Laval, Québec City, QC, Canada.
³² VITAM, Centre de recherche en santé durable, Centre intégré universitaire de santé et services sociaux de la Capitale Nationale, Québec City, QC, Canada.
³³ Cincinnati Children's Hospital Medical Center, OH, Cincinnati, USA.
³⁴ College of Medicine, Department of Pediatrics, University of Cincinnati, Cincinnati, OH, United States.
³⁵ Université Laval, QC, Canada.
³⁶ CHU de Québec, Québec City, QC, Canada.
³⁷ School of Rehabilitation, Faculty of Medicine and Health Sciences, Université de Sherbrooke, Sherbrooke, QC, Canada.
³⁸ Research Center of the Centre Hospitalier de l'Université de Sherbrooke, Sherbrooke, QC, Canada.
³⁹ Centre for Epidemiology Versus Arthritis, Centre for Musculoskeletal Research, Division of Musculoskeletal and Dermatological Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Science Centre, Manchester, UK.
⁴⁰ National Institute for Health Research Biomedical Research Centre, Manchester University Hospital NHS Trust, Manchester, UK.
⁴¹ Manchester Centre for Health Psychology, Division of Psychology and Mental Health, University of Manchester, Manchester, UK.
⁴² Division of Rheumatology, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
⁴³ Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
⁴⁴ Arthritis Rehabilitation and Education Program, Arthritis Society Canada, Ottawa, ON, Canada.
⁴⁵ School of Epidemiology and Community Medicine, Department of Medicine, University of Ottawa, Ottawa, ON, Canada.
⁴⁶ Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, ON, Canada.
⁴⁷ WHO Collaborating Centre for Knowledge Translation and Health Technology Assessment in Health Equity, Bruyère Research Institute, Ottawa, ON, Canada.
⁴⁸ Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
⁴⁹ Lawrence S. Bloomberg, Faculty of Nursing, University of Toronto, Toronto, ON, Canada.

PMID: 37491246
PMCID: PMC10369758
DOI: 10.1186/s12969-023-00849-0

"I'd like more options!": Interviews to explore young people and family decision-making needs for pain management in juvenile idiopathic arthritis

Karine Toupin-April et al. Pediatr Rheumatol Online J. 2023.

. 2023 Jul 26;21(1):74.

doi: 10.1186/s12969-023-00849-0.

Authors

Affiliations

¹ School of Rehabilitation Sciences, Faculty of Health Sciences, University of Ottawa, Ottawa, ON, Canada. ktoupina@uottawa.ca.
² Department of Pediatrics, Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada. ktoupina@uottawa.ca.
³ Children's Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada. ktoupina@uottawa.ca.
⁴ Institut du Savoir Montfort, Ottawa, ON, Canada. ktoupina@uottawa.ca.
⁵ Department of Family and Emergency Medicine, Faculty of Medicine and Health Sciences, Université de Sherbrooke, Longueuil, Québec, Canada.
⁶ Canadian Arthritis Patient Alliance, Ottawa, ON, Canada.
⁷ Division of Rheumatology, IWK Health Centre, Halifax, NS, Canada.
⁸ Department of Pediatrics, Dalhousie University, Halifax, NS, Canada.
⁹ Children's Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada.
¹⁰ Department of Pediatrics, Faculty of Medicine, Ottawa, ON, Canada.
¹¹ Division of Rheumatology, Seattle Children's Hospital, Seattle, Washington, USA.
¹² Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA.
¹³ Department of Physical Therapy, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada.
¹⁴ Arthritis Research Canada, Vancouver, BC, Canada.
¹⁵ Department of Pediatrics, Children's Mercy Kansas City, Kansas City, MO, USA.
¹⁶ Division of Rheumatology, Hackensack University Medical Center, Hackensack Meridian School of Medicine, Hackensack, NJ, USA.
¹⁷ Public Health Agency of Canada, Ottawa, ON, Canada.
¹⁸ Queen's University, ON, Ottawa, Canada.
¹⁹ Canadian Arthritis Patient Alliance, ON, Sudbury, Canada.
²⁰ Canadian Arthritis Patient Alliance, New Haven, CT, USA.
²¹ Yale University School of Medicine, New Haven, CT, USA.
²² University of Ottawa, Ottawa, ON, Canada.
²³ Faculty of Social Sciences, University of Ottawa, Ottawa, ON, Canada.
²⁴ Behavioural Neurosciences and Consultation Liaison Team, Mental Health, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.
²⁵ School of Psychology, Faculty of Social Sciences, University of Ottawa, ON, Ottawa, Canada.
²⁶ School of Rehabilitation, Faculty of Medicine, Université de Montréal, Montréal, QC, Canada.
²⁷ Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal, Montréal, QC, Canada.
²⁸ Research Centre of the Sainte-Justine University Hospital, Montreal, QC , Canada.
²⁹ Statistics Canada, Government of Canada, Ottawa, ON, Canada.
³⁰ The Ottawa Hospital, University of Ottawa, Ottawa, ON, Canada.
³¹ Department of Family and Emergency Medicine, Université Laval, Québec City, QC, Canada.
³² VITAM, Centre de recherche en santé durable, Centre intégré universitaire de santé et services sociaux de la Capitale Nationale, Québec City, QC, Canada.
³³ Cincinnati Children's Hospital Medical Center, OH, Cincinnati, USA.
³⁴ College of Medicine, Department of Pediatrics, University of Cincinnati, Cincinnati, OH, United States.
³⁵ Université Laval, QC, Canada.
³⁶ CHU de Québec, Québec City, QC, Canada.
³⁷ School of Rehabilitation, Faculty of Medicine and Health Sciences, Université de Sherbrooke, Sherbrooke, QC, Canada.
³⁸ Research Center of the Centre Hospitalier de l'Université de Sherbrooke, Sherbrooke, QC, Canada.
³⁹ Centre for Epidemiology Versus Arthritis, Centre for Musculoskeletal Research, Division of Musculoskeletal and Dermatological Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Science Centre, Manchester, UK.
⁴⁰ National Institute for Health Research Biomedical Research Centre, Manchester University Hospital NHS Trust, Manchester, UK.
⁴¹ Manchester Centre for Health Psychology, Division of Psychology and Mental Health, University of Manchester, Manchester, UK.
⁴² Division of Rheumatology, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
⁴³ Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
⁴⁴ Arthritis Rehabilitation and Education Program, Arthritis Society Canada, Ottawa, ON, Canada.
⁴⁵ School of Epidemiology and Community Medicine, Department of Medicine, University of Ottawa, Ottawa, ON, Canada.
⁴⁶ Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, ON, Canada.
⁴⁷ WHO Collaborating Centre for Knowledge Translation and Health Technology Assessment in Health Equity, Bruyère Research Institute, Ottawa, ON, Canada.
⁴⁸ Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
⁴⁹ Lawrence S. Bloomberg, Faculty of Nursing, University of Toronto, Toronto, ON, Canada.

PMID: 37491246
PMCID: PMC10369758
DOI: 10.1186/s12969-023-00849-0

Abstract

Background: Juvenile idiopathic arthritis (JIA) is a common pediatric rheumatic condition and is associated with symptoms such as joint pain that can negatively impact health-related quality of life. To effectively manage pain in JIA, young people, their families, and health care providers (HCPs) should be supported to discuss pain management options and make a shared decision. However, pain is often under-recognized, and pain management discussions are not optimal. No studies have explored decision-making needs for pain management in JIA using a shared decision making (SDM) model. We sought to explore families' decision-making needs with respect to pain management among young people with JIA, parents/caregivers, and HCPs.

Methods: We conducted semi-structured virtual or face-to-face individual interviews with young people with JIA 8-18 years of age, parents/caregivers and HCPs using a qualitative descriptive study design. We recruited participants online across Canada and the United States, from a hospital and from a quality improvement network. We used interview guides based on the Ottawa Decision Support Framework to assess decision-making needs. We audiotaped, transcribed verbatim and analyzed interviews using thematic analysis.

Results: A total of 12 young people (n = 6 children and n = 6 adolescents), 13 parents/caregivers and 11 HCPs participated in interviews. Pediatric HCPs were comprised of rheumatologists (n = 4), physical therapists (n = 3), rheumatology nurses (n = 2) and occupational therapists (n = 2). The following themes were identified: (1) need to assess pain in an accurate manner; (2) need to address pain in pediatric rheumatology consultations; (3) need for information on pain management options, especially nonpharmacological approaches; (4) importance of effectiveness, safety and ease of use of treatments; (5) need to discuss young people/families' values and preferences for pain management options; and the (6) need for decision support. Themes were similar for young people, parents/caregivers and HCPs, although their respective importance varied.

Conclusions: Findings suggest a need for evidence-based information and communication about pain management options, which would be addressed by decision support interventions and HCP training in pain and SDM. Work is underway to develop such interventions and implement them into practice to improve pain management in JIA and in turn lead to better health outcomes.

Keywords: Decision-making needs; Juvenile idiopathic arthritis; Pain management; Shared decision making.

PubMed Disclaimer

Conflict of interest statement

LCL holds the Harold Robinson/Arthritis Society Chair in Arthritic Diseases.

PT has reported receiving an honorarium as a member of an independent advisory panel for the Reformulary Group and as a member of a Safety and Monitoring Committee for a biologic for Parexel International and has reported co-chairing the OMERACT executive committee.

WBB has common stock in the following publicly traded companies: Pfizer, Merck, Abbott Laboratories, Viatris, Johnson & Johnson.

EMM is the principal investigator of the Pediatric Rheumatology Care and Outcomes Improvement Network.

Figures

**Fig. 1**
SDM process and outcomes to guide the analyses Fig. 1 shows the elements of the SDM process and outcomes used to guide the analyses

See this image and copyright information in PMC

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"I'd like more options!": Interviews to explore young people and family decision-making needs for pain management in juvenile idiopathic arthritis

Affiliations

"I'd like more options!": Interviews to explore young people and family decision-making needs for pain management in juvenile idiopathic arthritis

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