Exploring Patient Engagement: A Qualitative Analysis of Low-Income Urban Participants in Asthma Research

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.