van der Ven Jeffrey, van den Bemt Bart J F, Ariaans Floor, Vriezekolk Johanna E, Flendrie Marcel, Verhoef Lise M
Department of Research, Sint Maartenskliniek, Nijmegen, The Netherlands.
Radboud University Medical Centre, Nijmegen, The Netherlands.
Rheumatol Adv Pract. 2024 Oct 4;8(4):rkae125. doi: 10.1093/rap/rkae125. eCollection 2024.
To investigate the support needs of patients with gout regarding information, communication, treatment and disease monitoring, and patients' views on and preferences for eHealth applications to address these needs.
A focus group study using purposive sampling was conducted. Three focus group sessions with a duration of 2 h per group were held with in total of 23 patients using urate-lowering therapy, recruited from primary and secondary care. Audio recordings were transcribed, and data were analysed using thematic analysis.
Eight themes were identified. Five themes addressed support needs of gout patients and suitability of eHealth in addressing those needs: (1) Timely access to healthcare, especially during flares; (2) (personalized) information regarding diagnosis, medication, and diet; (3) insight into uric acid levels and medication side effects through blood monitoring; (4) better coordination across primary and secondary care; and (5) self-management and shared responsibility over care for maintaining health. Three themes addressed eHealth in general: (1) receptive towards eHealth in gout care; (2) the preference for eHealth to have a complementary role (i.e. not replacing face-to-face) contact with healthcare providers; and (3) preferences on eHealth use and functionalities.
Patients expressed various needs regarding their disease management and projected a supporting role for eHealth in (self)management of gout. Addressing the needs and preferences of patients could enhance their understanding of the disease and treatment, self-management, and possibly health outcomes.
调查痛风患者在信息、沟通、治疗和疾病监测方面的支持需求,以及患者对电子健康应用程序满足这些需求的看法和偏好。
采用目的抽样法进行焦点小组研究。从初级和二级医疗机构招募了23名正在接受降尿酸治疗的患者,分三组进行焦点小组讨论,每组时长2小时。对音频记录进行转录,并使用主题分析法对数据进行分析。
确定了八个主题。五个主题涉及痛风患者的支持需求以及电子健康在满足这些需求方面的适用性:(1)及时获得医疗服务,尤其是在病情发作期间;(2)关于诊断、药物和饮食的(个性化)信息;(3)通过血液监测了解尿酸水平和药物副作用;(4)改善初级和二级医疗之间的协调;(5)自我管理以及在保持健康方面对护理承担共同责任。另外三个主题总体涉及电子健康:(1)对痛风护理中的电子健康持接受态度;(2)倾向于电子健康发挥辅助作用(即不取代与医疗服务提供者的面对面接触);(3)对电子健康使用和功能的偏好。
患者表达了在疾病管理方面的各种需求,并预计电子健康在痛风(自我)管理中发挥支持作用。满足患者的需求和偏好可以增强他们对疾病和治疗的理解、自我管理能力,并可能改善健康结果。