Department of Medicine, Hospital of the University of Pennsylvania, Philadelphia, Pa.
Division of Pulmonary, Allergy, Critical Care Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pa.
J Allergy Clin Immunol Pract. 2017 Nov-Dec;5(6):1625-1631.e2. doi: 10.1016/j.jaip.2017.03.022. Epub 2017 May 10.
Uncontrolled asthma is a common highly morbid condition with worse outcomes in low-income and minority patients in part due to barriers accessing and engaging with health care. We developed a patient advocate to educate about and assist with navigating access to care and provider-patient communication. Participants completed an End of Study Questionnaire (ESQ) that was analyzed to assess experience and engagement with the protocol.
This study uses qualitative analysis to evaluate participant experience with the patient advocate and control group interventions.
The ESQ aimed to prompt an open-ended discussion of study experience. Questions were developed from patient focus groups about the patient advocate intervention (PAI), and were revised based on early responses. The questionnaire was administered after 12 months of study participation: 6 months of control or PAI, followed by 6 months of follow-up. Answers were evaluated using qualitative coding and a grounded theory analytical approach.
A total of 102 low-income and minority adults with moderate or severe asthma who had completed the study protocol at the time of publication (approximately one-third of total participants) found PAI and control group activities acceptable. Four themes emerged from both groups: (1) appreciation of interpersonal and educational interaction, (2) perception of improved health care adherence, (3) preparedness for physician appointments, (4) improved patient-provider communication. Attention from study personnel and review of asthma-related information was unanimously well received and empowered patients' active health care participation.
Patient engagement and empowerment were elicited by perceived education and personal attention. This study suggests a low-resource, feasible method to improve patient engagement.
未控制的哮喘是一种常见的高发病率疾病，低收入和少数族裔患者的预后更差，部分原因是他们在获得和参与医疗保健方面存在障碍。我们开发了一名患者代言人，负责教育患者并协助他们获得医疗保健和医患沟通。参与者完成了一份研究结束问卷（ESQ），该问卷经过分析，以评估他们对方案的体验和参与情况。
本研究使用定性分析来评估参与者对患者代言人及其对照组干预措施的体验。
ESQ 的目的是为了引发对研究体验的开放式讨论。问题是根据患者对患者代言人干预（PAI）的焦点小组讨论制定的，并根据早期的反馈进行了修订。该问卷在研究参与 12 个月后进行了管理：对照组或 PAI 6 个月，然后是 6 个月的随访。使用定性编码和扎根理论分析方法对答案进行评估。
共有 102 名低收入和少数族裔的中重度哮喘患者在发表时已完成研究方案（约占总参与者的三分之一），他们发现 PAI 和对照组活动是可以接受的。两组都出现了四个主题：（1）对人际和教育互动的欣赏，（2）对改善医疗保健依从性的看法，（3）为医生预约做好准备，（4）改善医患沟通。研究人员的关注和对哮喘相关信息的审查受到一致好评，并使患者积极参与医疗保健。
患者的参与和赋权是通过感知教育和个人关注来实现的。本研究提出了一种低资源、可行的方法来提高患者的参与度。
