Harmsen Simone, Nabuurs Joyce A, Lehman de Lehnsfeld Lotte F, van der Meij Marjoleine G, Broerse Jacqueline E W, Pittens Carina A C M
Faculty of Earth and Life Sciences, Athena Institute, VU University, Amsterdam, The Netherlands.
Dutch Arthritis Society, Amsterdam, The Netherlands.
Musculoskeletal Care. 2022 Dec;20(4):873-891. doi: 10.1002/msc.1639. Epub 2022 Apr 27.
This study aimed to gain insight into the real-world complexity of the challenges experienced by patients, their significant others, care professionals and the work and education environment concerning rheumatic diseases as well as the interrelation between these challenges; it also aimed to prioritise the identified challenges.
Using the Dialog Model, 21 people with various rheumatic diseases, 24 care professionals, 9 significant others, and 3 education and work representatives were asked about rheumatic disease-related challenges and needs in a series of focus groups and interviews. Data were inductively coded and analysed, resulting in a mind map thematically displaying the challenges. The mind map was translated into a survey, and respondents (N = 1802) prioritised themes and challenges.
Of the six identified themes, 'physical complaints' was prioritised the most, followed by 'collaboration in healthcare', 'social and mental wellbeing', 'self-management', 'information and options in healthcare' and 'work and education'. Challenges of people with rheumatic diseases appeared to be complexly interrelated. For instance, fatigue and pain affect everyday functioning, but can also heavily impact social and mental wellbeing. To facilitate support for these challenges, which many patients desire, patients and care professionals said that better collaboration between primary and secondary care professionals is needed. Additionally, patients felt that their experiential expertise deserves more acknowledgement from care professionals. Results were similar across different rheumatic diseases.
Many patients desire more support to manage life with their disease. To facilitate this, collaboration and communication between healthcare professionals, and between healthcare professionals and individual patients, should be improved.
本研究旨在深入了解患者、其重要他人、护理专业人员以及工作和教育环境在风湿性疾病方面所面临挑战的现实复杂性，以及这些挑战之间的相互关系；同时旨在对已识别的挑战进行优先级排序。
采用对话模型，在一系列焦点小组和访谈中，询问了21名患有各种风湿性疾病的患者、24名护理专业人员、9名重要他人以及3名教育和工作代表有关风湿性疾病相关的挑战和需求。对数据进行归纳编码和分析，生成一张以主题方式展示挑战的思维导图。该思维导图被转化为一项调查，受访者（N = 1802）对主题和挑战进行了优先级排序。
在已识别的六个主题中，“身体不适”被列为优先级最高的主题，其次是“医疗保健中的协作”、“社会和心理健康”、“自我管理”、“医疗保健中的信息与选择”以及“工作与教育”。风湿性疾病患者面临的挑战似乎相互关联复杂。例如，疲劳和疼痛会影响日常功能，但也会严重影响社会和心理健康。为了便于为许多患者所期望的这些挑战提供支持，患者和护理专业人员表示，初级和二级护理专业人员之间需要更好地协作。此外，患者认为他们的经验性专业知识应得到护理专业人员更多的认可。不同风湿性疾病的结果相似。
许多患者希望在应对疾病生活方面获得更多支持。为了实现这一点，应改善医疗保健专业人员之间以及医疗保健专业人员与个体患者之间的协作与沟通。
