Department of Medicine, Division of Rheumatology, University of Wisconsin-Madison School of Medicine and Public Health, Madison, Wisconsin, USA
Department of Pharmacy, University of Wisconsin-Madison School of Pharmacy, Madison, Wisconsin, USA.
Lupus Sci Med. 2022 Aug;9(1). doi: 10.1136/lupus-2022-000720.
Patients identified as black and from disadvantaged backgrounds have a twofold higher hydroxychloroquine (HCQ) non-adherence, which contributes to worse lupus outcomes and disparities. Yet, most adherence interventions lack tailored strategies for racially and socioeconomically diverse patients who face unique challenges with HCQ. We aimed to examine a broadly representative group of patients with SLE and physician perspectives on HCQ adherence and adherence strategies to redesign an adherence intervention.
We conducted four virtual focus groups (90 min each) with 11 racially and socioeconomically diverse patients with SLE recruited from two health systems. Additionally, we hosted two focus group meetings with nine healthcare advisors. In focus groups, patients: (1) shared their perspectives on using HCQ; (2) shared concerns leading to non-adherence; (3) discussed strategies to overcome concerns; (4) prioritised strategies from the most to least valuable to inform an adherence intervention. In two separate focus groups, healthcare advisors gave feedback to optimise an adherence intervention. Using content analysis, we analysed transcripts to redesign our adherence intervention.
Worry about side effects was the most common barrier phrase mentioned by patients. Key themes among patients' concerns about HCQ included: information gaps, logistical barriers, misbeliefs and medication burden. Finally, patients suggested adherence strategies and ranked those most valuable including co-pay assistance, personal reminders, etc. Patient and healthcare advisors informed designing a laminate version of an adherence intervention to link each barrier category with four to six patient-recommended adherence strategies.
We developed a patient stakeholder-informed and healthcare stakeholder-informed tailored intervention that will target non-adherence at the individual patient level.
被认定为黑人且来自劣势背景的患者羟氯喹（HCQ）不依从的风险增加一倍，这导致狼疮结局更差和存在差异。然而，大多数依从性干预措施缺乏针对种族和社会经济多样化患者的定制策略，这些患者在使用 HCQ 方面面临独特的挑战。我们旨在检查一组具有代表性的 SLE 患者和医生对 HCQ 依从性和依从性策略的看法，以重新设计依从性干预措施。
我们从两个医疗系统中招募了 11 名具有种族和社会经济多样性的 SLE 患者，进行了四次虚拟焦点小组（每次 90 分钟）。此外，我们还与九名医疗保健顾问举办了两次焦点小组会议。在焦点小组中，患者：（1）分享他们对使用 HCQ 的看法；（2）分享导致不依从的担忧；（3）讨论克服担忧的策略；（4）根据最有价值到最没有价值的策略对信息进行优先排序，以告知依从性干预措施。在两个单独的焦点小组中，医疗保健顾问提供了反馈，以优化依从性干预措施。我们使用内容分析方法分析转录本以重新设计我们的依从性干预措施。
对副作用的担忧是患者最常提到的障碍短语。患者对 HCQ 担忧的主要主题包括：信息差距、后勤障碍、误解和药物负担。最后，患者提出了依从性策略，并对最有价值的策略进行了排名，包括共付援助、个人提醒等。患者和医疗保健顾问为设计一个贴合患者和医疗保健顾问的定制干预措施提供了信息，该干预措施将在个体患者层面上针对不依从问题。
我们开发了一种基于患者利益相关者和医疗保健利益相关者的知情定制干预措施，该措施将针对个体患者的不依从问题。
