"I'd like more options!": Interviews to explore young people and family decision-making needs for pain management in juvenile idiopathic arthritis.
"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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DOI：
10.1186/s12969-023-00849-0
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发表时间：
2023-07-26
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影响因子：
--
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中科院分区：
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幼年特发性关节炎（JIA）是一种常见的儿科风湿性疾病，并伴有关节疼痛等症状，这些症状可能会对健康相关的生活质量产生负面影响。为了有效地管理JIA的疼痛，应支持年轻人，他们的家人和医疗保健提供者（HCP）讨论疼痛管理方案并做出共同决定。然而，疼痛往往被低估，疼痛管理的讨论并不是最佳的。没有研究探讨决策需要疼痛管理JIA使用共享决策（SDM）模型。我们试图探索家庭的决策需求与JIA的年轻人，父母/照顾者和HCP之间的疼痛管理。我们采用定性描述性研究设计，对8-18岁的JIA青少年、父母/照顾者和HCP进行了半结构化虚拟或面对面的个人访谈。我们从加拿大和美国的一家医院和一个质量改进网络中招募了参与者。我们使用基于渥太华决策支持框架的访谈指南来评估决策需求。我们对访谈进行了录音、逐字记录和主题分析。共有12名年轻人（n = 6名儿童和n = 6名青少年）、13名父母/护理人员和11名HCP参与了访谈。儿科HCP包括风湿病学家（n = 4）、物理治疗师（n = 3）、风湿病护士（n = 2）和职业治疗师（n = 2）。确定了以下主题：（1）需要以准确的方式评估疼痛;（2）需要在儿科风湿病学咨询中解决疼痛问题;（3）需要关于疼痛管理选择的信息，特别是非药物方法;（4）有效性、安全性和易用性治疗的重要性;（5）需要讨论年轻人/家庭对疼痛管理选择的价值观和偏好;（6）决策支持。年轻人、父母/照顾者和HCP的主题相似，尽管各自的重要性不同。研究结果表明，需要循证信息和沟通疼痛管理的选择，这将是解决决策支持干预和HCP培训疼痛和SDM。目前正在开展工作，以制定此类干预措施，并将其付诸实践，以改善JIA的疼痛管理，从而改善健康状况。
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. 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. 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. 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.
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影响因子：
4.7
作者：
Lovell, Daniel J.;Passo, Murray H.;Beukelman, Timothy;Bowyer, Suzanne L.;Gottlieb, Beth S.;Henrickson, Michael;Ilowite, Norman T.;Kimura, Yukiko;DeWitt, Esi Morgan;Segerman, Jill;Stein, Leonard D.;Taylor, Janalee;Vehe, Richard K.;Giannini, Edward H.
通讯作者：
Giannini, Edward H.
影响因子：
5.2
作者：
Rashid, Amir;Cordingley, Lis;Thomson, Wendy
通讯作者：
Thomson, Wendy
影响因子：
3.4
作者：
El Miedany, Yasser;El Gaafary, M.;Wassif, Ghada
通讯作者：
Wassif, Ghada
影响因子：
3.5
作者：
Makoul, G;Clayman, ML
通讯作者：
Clayman, ML
影响因子：
3.5
作者：
April, KT;Feldman, DE;Duffy, CM
通讯作者：
Duffy, CM