Department of Behavioral Sciences and Health Education, Emory University Rollins School of Public Health, Atlanta, GA, USA.
Department of Medicine, Emory University School of Medicine, Atlanta, GA, USA.
Arthritis Res Ther. 2019 Jun 25;21(1):155. doi: 10.1186/s13075-019-1942-7.
Healthcare access, utilization, and quality play critical roles in shaping mortality and morbidity among patients diagnosed with systemic lupus erythematosus (SLE), and yet healthcare access, utilization, and quality can be suboptimal for many people living with SLE. The aim of this qualitative study was to explore the perceived impact of a peer-led, group-based educational intervention (the Chronic Disease Self-Management Program [CDSMP]) on healthcare engagement behaviors among African American women with SLE.
Participants were recruited from the WELL (Women Empowered to Live with Lupus) study, a behavioral trial of the effectiveness of the CDSMP on African American women diagnosed with SLE. We conducted two waves of qualitative, one-on-one, semi-structured interviews with 24 purposively sampled WELL participants; one interview was conducted before CDSMP participation and one after. Wave 1 interviews explored health service use behaviors at baseline; Wave 2 interviews focused on changes in these behaviors post-intervention and women's perceptions of whether and how the CDSMP shaped these changes. Transcripts were analyzed using thematic analysis methods.
Study participants perceived the CDSMP to be a valuable resource for supporting two distinct health service use behaviors: communicating with doctors (N = 16 [88.9%]) and managing medication side effects (N = 17 [41.2%]). Women perceived that the CDSMP had the most potent and widespread effects on patients' communication with doctors. Strategies that women believed generated improvements in patient-doctor communication included enhancing preparation for appointments and boosting patient participation during doctor's visits. Women's reported post-CDSMP improvements in health service use behaviors varied by disease severity and depression. Insurance coverage, while not probed directly during baseline interviews, emerged organically as a key factor affecting health service use behaviors; the CDSMP did not seem to improve participants' ability to circumvent insurance-related barriers to accessing care.
Our findings suggest that the CDSMP may help enhance healthcare service utilization among African American women with SLE by improving doctor/patient communication and medication side effect management. If future research confirms this conclusion, African American women living with SLE should be encouraged to participate in CDSMP workshops to enhance health service use behaviors.
NCT02988661 . Registered 12/07/2016.
医疗保健的可及性、利用情况和质量在系统性红斑狼疮 (SLE) 患者的死亡率和发病率方面起着至关重要的作用，但许多 SLE 患者的医疗保健可及性、利用情况和质量可能并不理想。本定性研究的目的是探讨以患者为中心的基于小组的教育干预措施（慢性病自我管理计划 [CDSMP]）对非裔美国 SLE 患者医疗保健参与行为的感知影响。
参与者是从 WELL（赋予狼疮女性力量生活）研究中招募的，这是一项关于 CDSMP 对非裔美国 SLE 女性有效性的行为试验。我们对 24 名经过精心挑选的 WELL 参与者进行了两轮一对一的半结构化访谈；一轮在 CDSMP 参与之前进行，一轮在之后进行。第 1 波访谈在基线时探讨了健康服务使用行为；第 2 波访谈侧重于干预后这些行为的变化以及女性对 CDSMP 是否以及如何塑造这些变化的看法。使用主题分析方法对转录本进行分析。
研究参与者认为 CDSMP 是支持两种不同的健康服务使用行为的有价值的资源：与医生沟通（N=16 [88.9%]）和管理药物副作用（N=17 [41.2%]）。女性认为 CDSMP 对患者与医生的沟通最有影响力和最广泛的影响。女性认为可以提高患者与医生沟通效果的策略包括增强预约准备和提高患者在医生就诊期间的参与度。女性报告的 CDSMP 后健康服务使用行为的改善因疾病严重程度和抑郁程度而异。保险覆盖虽然在基线访谈中没有直接探讨，但有机地成为影响健康服务使用行为的关键因素；CDSMP 似乎并没有提高参与者规避与保险相关的医疗保健障碍的能力。
我们的研究结果表明，CDSMP 可以通过改善医患沟通和药物副作用管理来帮助提高非裔美国 SLE 女性的医疗保健服务利用率。如果未来的研究证实了这一结论，应该鼓励患有 SLE 的非裔美国女性参加 CDSMP 研讨会，以增强健康服务使用行为。
NCT02988661。注册于 2016 年 12 月 7 日。
