Ester Manuel, White Krista, Dhiman Kiran, Zafar Saania, Subdar Shakeel, Zimmermann Gabrielle L, Hoens Alison M, Manske Sarah L, Hazlewood Glen, Lacaille Diane, Barber Megan R W, Panich Niki, Jung Michelle, Perry Mark G, Twilt Marinka, Then Karen L, Charlton Alexandra, Barber Claire E H
McCaig Institute for Bone and Joint Health, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
O'Brien Institute for Public Health, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
BMC Rheumatol. 2025 Mar 12;9(1):31. doi: 10.1186/s41927-025-00481-3.
Timely, high-quality care is critical to rheumatoid arthritis (RA) management. In Alberta, thousands of individuals with RA are waiting for care due to the resource-intensive nature of lifelong follow-ups and rheumatologist shortages. With 20-50% of routine follow-ups not leading to treatment changes or raising new concerns, many appointments may be avoidable if care were restructured. Patient-initiated models extend rheumatologist follow-up intervals beyond 12 months where appropriate, which can reduce inefficiencies and improve care access. To address provincial RA care challenges, we co-developed a theory of change (TOC) for patient-initiated follow-up care.
A TOC serves to define health services interventions and their intended impact prior to implementation testing. We worked with 35 healthcare leaders, implementation experts, and patient partners to co-develop a TOC for patient-initiated RA follow-up care. During the scoping phase, we held discussions with healthcare leaders and reviewed evidence on patient-initiated follow-up models to assess their implementation potential. During the development phase, we drafted a TOC map using scoping phase findings and clinical and patient expertise. During the refinement phase, feedback was collected to optimize the TOC. Meetings were recorded, transcribed, and analyzed using deductive qualitative content analysis alongside anonymous poll results and informal feedback to guide TOC refinement.
The scoping phase identified challenges in RA care, including long waitlists and unnecessary appointments, which patient-initiated follow-up models have the potential to address. TOC discussions highlighted two intended impacts: (1) efficient and effective care for patients when needed, and (2) a sustainable model for RA care. Feedback in the refinement phase covered 4 topics: (1) preference for an interdisciplinary flare clinic, (2) patient selection, (3) patient education, and (4) patient monitoring. Tools and strategies were co-developed with partners to support patients (e.g., decision tool for patient-provider discussions) and the health system (e.g., monthly meetings to monitor burden). The final TOC for patient-initiated follow-up in RA details the care pathway, key resources and considerations, and evaluation outcomes.
A patient-centered, context-specific patient-initiated RA follow-up care model was co-developed with patient and healthcare partners. An implementation pilot will test its ability to address RA care challenges.
Not applicable.
及时、高质量的护理对于类风湿性关节炎（RA）的管理至关重要。在艾伯塔省，由于终身随访资源密集且风湿病专家短缺，数千名RA患者正在等待护理。由于20%-50%的常规随访不会导致治疗改变或引发新的问题，如果对护理进行重组，许多预约可能是可以避免的。患者发起的模式在适当情况下将风湿病专家的随访间隔延长至12个月以上，这可以减少低效情况并改善护理可及性。为应对省级RA护理挑战，我们共同制定了患者发起的随访护理变革理论（TOC）。
TOC用于在实施测试之前定义卫生服务干预措施及其预期影响。我们与35位医疗保健领导者、实施专家和患者合作伙伴合作，共同制定患者发起的RA随访护理TOC。在范围界定阶段，我们与医疗保健领导者进行了讨论，并审查了关于患者发起的随访模式的证据，以评估其实施潜力。在开发阶段，我们利用范围界定阶段的结果以及临床和患者专业知识起草了一份TOC图。在完善阶段，收集反馈以优化TOC。会议进行了记录、转录，并使用演绎定性内容分析以及匿名投票结果和非正式反馈进行分析，以指导TOC的完善。
范围界定阶段确定了RA护理中的挑战，包括长等候名单和不必要的预约，患者发起的随访模式有潜力解决这些问题。TOC讨论突出了两个预期影响：（1）在需要时为患者提供高效有效的护理，（2）一种可持续的RA护理模式。完善阶段的反馈涵盖4个主题：（1）对跨学科病情突发诊所的偏好，（2）患者选择，（3）患者教育，（4）患者监测。与合作伙伴共同开发了工具和策略，以支持患者（例如，用于患者与提供者讨论的决策工具）和卫生系统（例如，每月会议以监测负担）。RA患者发起的随访的最终TOC详细说明了护理途径、关键资源和注意事项以及评估结果。
与患者和医疗保健合作伙伴共同开发了以患者为中心、因地制宜的患者发起的RA随访护理模式。一项实施试点将测试其应对RA护理挑战的能力。
不适用。
