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

• Үндсэн зохиолчид: Karine Toupin-April (Зохиогч), Isabelle Gaboury (Зохиогч), Laurie Proulx (Зохиогч), Adam M. Huber (Зохиогч), Ciarán M. Duffy (Зохиогч), Esi M. Morgan (Зохиогч), Linda C. Li (Зохиогч), Elizabeth Stringer (Зохиогч), Mark Connelly (Зохиогч), Jennifer E. Weiss (Зохиогч), Michele Gibbon (Зохиогч), Hannah Sachs (Зохиогч), Aditi Sivakumar (Зохиогч), Alexandra Sirois (Зохиогч), Emily Sirotich (Зохиогч), Natasha Trehan (Зохиогч), Naomi Abrahams (Зохиогч), Janice S. Cohen (Зохиогч), Sabrina Cavallo (Зохиогч), Tania El Hindi (Зохиогч), Marco Ragusa (Зохиогч), France Légaré (Зохиогч), William B. Brinkman (Зохиогч), Paul R. Fortin (Зохиогч), Simon Décary (Зохиогч), Rebecca Lee (Зохиогч), Sabrina Gmuca (Зохиогч), Gail Paterson (Зохиогч), Peter Tugwell (Зохиогч), Jennifer N. Stinson (Зохиогч)
• Формат: Ном
• Хэвлэсэн: BMC, 2023-07-01T00:00:00Z.
• Нөхцлүүд: article
• Онлайн хандалт: Connect to this object online.
• Notes: 10.1186/s12969-023-00849-0; 1546-0096
• Keywords: Juvenile idiopathic arthritis; Pain management; Decision-making needs; Shared decision making; Pediatrics; RJ1-570; Diseases of the musculoskeletal system; RC925-935
• Source: Pediatric Rheumatology Online Journal, Vol 21, Iss 1, Pp 1-18 (2023)

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.