Chaplin Hema, Simpson Carol, Wilkins Kate, Meehan Jessica, Ng Nora, Galloway James, Scott Ian C, Sen Debajit, Tattersall Rachel, Moss-Morris Rona, Lempp Heidi, Norton Sam
Health Psychology Section, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
Centre for Rheumatic Diseases, Department of Inflammation Biology, King's College London, London, UK.
Rheumatol Adv Pract. 2024 Jun 10;8(3):rkae076. doi: 10.1093/rap/rkae076. eCollection 2024.
This study aims to explore patients' and clinicians' experiences in managing and living with refractory disease (RD) and persistent physical and emotional symptoms (PPES) in patients with RA or polyarticular JIA from their perspectives through interviews and/or focus groups.
A qualitative exploration with 25 patients and 32 multidisciplinary rheumatology healthcare professionals (HCPs) was conducted to obtain participants respective understanding and experiences of managing RD/PPES and its impact on the patient-professional relationship. A pragmatic epistemology approach with framework analysis was employed.
Four key themes were identified from both patients and professionals in the management of RD/PPES: risk/perpetuating factors/triggers; need for a patient-centred holistic approach to care, diagnosis and treatment; discordance and impact on the patient-practitioner relationship and current problems in managing RD/PPES. These themes covered 22 subthemes, with none being patient specific and seven being HCP specific. Suggestions for potential management strategies were highlighted throughout, such as involving other specialties or a multidisciplinary team, assessing/treating patient-reported outcome measures and psychosocial factors, patient (re)education, need for adjustments/aids or adaptations, checking the diagnosis and further investigations/imaging and optimizing medications.
Management strategies need to be developed that enable appropriate treatment plans for those with RD/PPES that account for wider biopsychosocial factors beyond inflammation and reduce discordance in the patient-practitioner relationship.
本研究旨在通过访谈和/或焦点小组，从患者和临床医生的角度，探索类风湿关节炎（RA）或多关节型幼年特发性关节炎（JIA）患者在管理难治性疾病（RD）以及持续性身体和情感症状（PPES）方面的经历，以及他们在这种情况下的生活体验。
对25名患者和32名多学科风湿病医疗保健专业人员（HCPs）进行了定性探索，以获取参与者对管理RD/PPES的各自理解和经验，以及其对患者与专业人员关系的影响。采用了带有框架分析的实用认识论方法。
在RD/PPES的管理方面，从患者和专业人员中都确定了四个关键主题：风险/持续因素/触发因素；需要以患者为中心的整体护理、诊断和治疗方法；不一致性以及对患者与从业者关系的影响，以及管理RD/PPES中的当前问题。这些主题涵盖了22个子主题，其中没有一个是患者特有的，有七个是HCP特有的。文中还突出了潜在管理策略的建议，例如让其他专科或多学科团队参与、评估/治疗患者报告的结局指标和心理社会因素、对患者进行（再）教育、需要调整/辅助设备或适应措施、检查诊断以及进一步的检查/成像，并优化药物治疗。
需要制定管理策略，为患有RD/PPES 的患者制定适当的治疗计划，该计划要考虑到炎症之外更广泛的生物心理社会因素，并减少患者与从业者关系中的不一致性。
