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.
Br J Health Psychol. 2025 Feb;30(1):e12780. doi: 10.1111/bjhp.12780.
This study aims to explore patients' and clinicians' understanding and experiences of refractory disease (RD) and persistent physical and emotional symptoms (PPES) in patients with inflammatory arthritis (IA), namely rheumatoid arthritis or polyarticular juvenile idiopathic arthritis from their perspectives through interviews and/or focus groups.
A qualitative study was conducted, following a pragmatic epistemology approach with framework analysis employed.
Semi-structured interviews or focus groups with IA patients (n = 25) and multi-disciplinary rheumatology HCPs (n = 32) were conducted at one time point to obtain participants respective understanding and experiences of managing RD/PPES, and its impact on the patient-professional relationship.
Three key themes were identified from both patients and professionals' experiences of RD/PPES: (1) relevant treatment experiences, (2) symptoms (with or without inflammation) and (3) impact: physical, psychological and social. These themes included 28 specific categories that would be considered as components characterizing RD/PPES, most common to both patients and HCPs with six being patient-specific and only one HCP-specific. The specific biopsychosocial symptoms and impacts of RD/PPES pertain to pain, fatigue, stiffness, joint involvement and physical, psychological and social functioning and quality of life, covering disease-related distress, mobility and independence. Wider influential factors such as comorbidities, non-adherence, health/medication beliefs and behaviours and social support were also identified.
Common persistent symptoms that have both mental and physical impact characterize RD/PPES in IA and therefore a more integrated holistic approach to treatment is needed from multi-disciplinary HCPs, including health psychologists.
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，探讨炎性关节炎（IA）患者（即类风湿性关节炎或多关节型幼年特发性关节炎患者）对难治性疾病（RD）以及持续的身体和情绪症状（PPES）的理解和体验。
采用实用认识论方法并运用框架分析进行了一项定性研究。
在一个时间点对IA患者（n = 25）和多学科风湿病医护人员（n = 32）进行了半结构化访谈或焦点小组讨论，以获取参与者对管理RD/PPES的各自理解和体验，以及其对患者与医护人员关系的影响。
从患者和专业人员对RD/PPES的体验中确定了三个关键主题：（1）相关治疗经历，（2）症状（有或无炎症），以及（3）影响：身体、心理和社会方面。这些主题包括28个特定类别，将被视为表征RD/PPES的组成部分，患者和医护人员最常见的有六个，其中六个是患者特有的，只有一个是医护人员特有的。RD/PPES具体的生物心理社会症状和影响涉及疼痛、疲劳、僵硬、关节受累以及身体、心理和社会功能及生活质量，涵盖与疾病相关的痛苦、活动能力和独立性。还确定了更广泛的影响因素，如合并症、不依从、健康/用药信念和行为以及社会支持。
在IA中，具有身心影响的常见持续症状表征了RD/PPES，因此包括健康心理学家在内的多学科医护人员需要采用更综合的整体治疗方法。
