Newcastle University Newcastle upon Tyne Hospitals National Health Service Foundation Trust, and Northumbria University, Newcastle upon Tyne, UK.
University of East Anglia, Norwich, UK.
Arthritis Care Res (Hoboken). 2018 Jul;70(7):1064-1073. doi: 10.1002/acr.23536. Epub 2018 May 21.
Functional ability and participation in life situations are compromised in many primary Sjögren's syndrome (SS) patients. This study aimed to identify the key barriers and priorities to participation in daily living activities, in order to develop potential future interventions.
Group concept mapping, a semiquantitative, mixed-methods approach was used to identify and structure ideas from UK primary SS patients, adult household members living with a primary SS patient, and health care professionals. Brainstorming generated ideas, which were summarized into a final set of statements. Participants individually arranged these statements into themes and rated each statement for importance. Multidimensional scaling and hierarchical cluster analysis were applied to sorted and rated data to produce visual representations of the ideas (concept maps), enabling identification of agreed priority areas for interventions.
A total of 121 patients, 43 adult household members, and 67 health care professionals took part. In sum, 463 ideas were distilled down to 94 statements. These statements were grouped into 7 clusters: Patient Empowerment, Symptoms, Wellbeing, Access and Coordination of Health Care, Knowledge and Support, Public Awareness and Support, and Friends and Family. Patient Empowerment and Symptoms were rated as priority conceptual themes. Important statements within priority clusters indicate patients should be taken seriously and supported to self-manage symptoms of oral and ocular dryness, fatigue, pain, and poor sleep.
Our data highlighted the fact that in addition to managing primary SS symptoms, interventions aiming to improve patient empowerment, general wellbeing, access to health care, patient education, and social support are important to facilitate improved participation in daily living activities.
许多原发性干燥综合征（SS）患者的功能能力和参与生活情况都受到影响。本研究旨在确定参与日常生活活动的主要障碍和重点，以便制定潜在的未来干预措施。
采用群组概念映射（一种半定量、混合方法），确定和构建来自英国原发性 SS 患者、与原发性 SS 患者共同生活的成年家庭成员以及卫生保健专业人员的想法。头脑风暴产生想法，将其总结为最终的陈述。参与者个人将这些陈述安排成主题，并对每个陈述的重要性进行评分。多维标度和层次聚类分析应用于排序和评分数据，以产生想法的可视化表示（概念图），从而确定干预的共识重点领域。
共有 121 名患者、43 名成年家庭成员和 67 名卫生保健专业人员参加。总共提炼出 463 个想法，归纳为 94 个陈述。这些陈述分为 7 个群集：患者赋权、症状、幸福感、医疗保健的获取和协调、知识和支持、公众意识和支持以及朋友和家人。患者赋权和症状被评为优先概念主题。优先群集中的重要陈述表明，应认真对待患者并支持他们自我管理口腔和眼部干燥、疲劳、疼痛和睡眠不佳等症状。
我们的数据强调了一个事实，即除了管理原发性 SS 症状外，旨在提高患者赋权、整体幸福感、获得医疗保健、患者教育和社会支持的干预措施对于促进日常生活活动的参与也很重要。
