ACR Meeting Abstracts

ACR Meeting Abstracts

Abstract Number: 2343

Exploring Decision Making Needs about Pain Management Among Adolescents with Juvenile Idiopathic Arthritis and Their Families: Preliminary Results from Interviews

Karine Toupin-April1, Jennifer N. Stinson2, Adam Huber3,4, Ciarán M. Duffy5, Isabelle Gaboury6, Esi Morgan7,8, Lucie Brosseau9, William Brinkman7,8, Linda Li10, Tania El Hindi11, Aditi Sivakumar11, Marg Bisch12, Janice Cohen13, Elizabeth Stringer14, France Légaré15, Laurie Proulx16, Paul R. Fortin17 and Peter Tugwell18, 1Children’s Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada, 2Anesthesia and Pain Medicine, The Hospital for Sick Children, Toronto, ON, Canada, 3IWK Health Centre, Halifax, NS, Canada, 4Dalhousie University, Halifax, NS, Canada, 5Children's Hospital of Eastern Ontario and University of Ottawa, Ottawa, ON, Canada, 6Universite de Sherbrooke, Sherbrooke, ON, Canada, 7Cincinnati Children's Hospital Medical Center, Cincinnati, OH, 8University of Cincinnati, Cincinnati, OH, 9University of Ottawa, Ottawa, ON, Canada, 10Arthritis Research Canada, Richmond, BC, Canada, 11Children's Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada, 12Children's Hospital of Eastern Ontario, Ottawa, ON, Canada, 13Children's Hospital of Eastern Ontario Research Institute, ottawa, ON, Canada, 14Department of Rheumatology, IWK Health Centre, Halifax, NS, Canada, 15Laval University, Montreal, QC, Canada, 16Canadian Arthritis Patient Alliance, Ottawa, ON, Canada, 17Medicine, CHU de Québec - University of Laval, Quebec, QC, Canada, 18Center For Global Health, Institute of Population Hlth, Ottawa, ON, Canada

Meeting: 2018 ACR/ARHP Annual Meeting

Keywords: , , ,

Session Information

Date: Tuesday, October 23, 2018

Title: Patient Outcomes, Preferences, and Attitudes Poster II: Patient Perspectives

Session Type: ACR Poster Session C

Session Time: 9:00AM-11:00AM

Background/Purpose:

Adolescents with juvenile idiopathic arthritis (JIA), one of the most common causes of chronic musculoskeletal pain among youth, face many difficult decisions. However, we know little about their decision making needs. Therefore, we sought to explore decision making needs about pain management among adolescents with JIA and their parents/caregivers.

Methods:

We have conducted semi-structured individual interviews with adolescents with JIA (13-18 years of age) and one of their parents/caregivers using a qualitative descriptive study design. Using purposive sampling, we recruited adolescents and their parents/caregivers at the Children’s Hospital of Eastern Ontario (CHEO) Rheumatology Clinic, and through the Pediatric Rheumatology Care and Outcomes Improvement Network. Eligible participants took part in either face-to-face or online interviews with a research team member. The interview guide was based on a conceptual model developed by the Outcome Measures in Rheumatology (OMERACT) shared decision making working group. Interviews were audiotaped, transcribed verbatim and analyzed using content analysis with NVivo 11 software. We aim to interview fifteen adolescents and their parents, an estimated sample to reach data saturation.

Results:

To date, five female adolescents with JIA and five parents have participated in interviews. Most adolescents and parents reported that the disease was not currently active. The median pain value reported by adolescents and their parents was 30 out of 100 mm (range: 3-50 mm) on a visual analogue scale. Adolescents and parents reported having used both medication and non-pharmacological options (e.g., rest, heat, ice, splints, stretching) to manage pain, with the number of treatments ranging from 2 to 6. The most important consideration when choosing pain management options was the effectiveness of treatments. Most adolescents also wanted to avoid injections and splints, while parents wanted to avoid pills, and the short and long term adverse effects of medication. All participants mentioned that adolescents played an active role in choosing pain management options. They also reported discussing their preferences with their healthcare team, but usually in the context of medication to control disease activity. Adolescents and parents wished to know more about a variety of pain management options, potential risks and estimated effectiveness of treatments. Parents preferred receiving this information from an app or website, while adolescents preferred receiving it from their healthcare providers. Adolescents and parents preferred to be involved in the decision making process.

Conclusion:

Results of initial interviews suggest an unmet need to receive more information on pain management options and for tools to clarify families’ pain management preferences. Adolescents and parents also expressed differences in how they prefer to receive the information. Additional interviews will help inform the development of decision support interventions to help families make more informed, value-based decisions about pain management options, while simultaneously helping to foster communication within families and with their healthcare providers.

Disclosure: K. Toupin-April, None; J. N. Stinson, None; A. Huber, None; C. M. Duffy, None; I. Gaboury, None; E. Morgan, None; L. Brosseau, None; W. Brinkman, None; L. Li, None; T. El Hindi, None; A. Sivakumar, None; M. Bisch, None; J. Cohen, None; E. Stringer, None; F. Légaré, None; L. Proulx, None; P. R. Fortin, AstraZeneca, 5; P. Tugwell, None.

To cite this abstract in AMA style:

Toupin-April K, Stinson JN, Huber A, Duffy CM, Gaboury I, Morgan E, Brosseau L, Brinkman W, Li L, El Hindi T, Sivakumar A, Bisch M, Cohen J, Stringer E, Légaré F, Proulx L, Fortin PR, Tugwell P. Exploring Decision Making Needs about Pain Management Among Adolescents with Juvenile Idiopathic Arthritis and Their Families: Preliminary Results from Interviews [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 9). https://acrabstracts.org/abstract/exploring-decision-making-needs-about-pain-management-among-adolescents-with-juvenile-idiopathic-arthritis-and-their-families-preliminary-results-from-interviews/. Accessed .

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