A patient advocate to facilitate access and improve communication, care, and outcomes in adults with moderate or severe asthma: Rationale, design, and methods of a randomized controlled trial

Abstract

Few interventions to improve asthma outcomes have targeted low-income minority adults. Even fewer have focused on the real-world practice where care is delivered. We adapted a patient navigator, here called a Patient Advocate (PA), a term preferred by patients, to facilitate and maintain access to chronic care for adults with moderate or severe asthma and prevalent co-morbidities recruited from clinics serving low-income urban neighborhoods. We describe the planning, design, methodology (informed by patient and provider focus groups), baseline results, and challenges of an ongoing randomized controlled trial of 312 adults of a PA intervention implemented in a variety of practices. The PA coaches, models, and assists participants with preparations for a visit with the asthma clinician; attends the visit with permission of participant and provider; and confirms participants’ understanding of what transpired at the visit. The PA facilitates scheduling, obtaining insurance coverage, overcoming patients’ unique social and administrative barriers to carrying out medical advice and transfer of information between providers and patients. PA activities are individualized, take account of comorbidities, and are generalizable to other chronic diseases. PAs are recent college graduates interested in health-related careers, research experience, working with patients, and generally have the same race/ethnicity distribution as potential participants. We test whether the PA intervention, compared to usual care, is associated with improved and sustained asthma control and other asthma outcomes (prednisone bursts, ED visits, hospitalizations, quality of life, FEV1) relative to baseline. Mediators and moderators of the PA-asthma outcome relationship are examined along with the intervention’s cost-effectiveness.

Adherence in Asthma and COPD: New Strategies for an Old Problem

“…70 Like coaching, navigators may be effective in addressing unintentional non-adherence, but because it is a costly and labor-intensive approach, most trials have focused on populations with suboptimal clinical outcomes due, in part, to intentional non-adherence. This model has more recently been applied to adults with asthma [71][72][73] and COPD, 70 but its effectiveness it unknown either because of methodological limitations 70 or because evaluation is ongoing. 73 Shared Decision-Making.…”

“…This model has more recently been applied to adults with asthma [71][72][73] and COPD, 70 but its effectiveness it unknown either because of methodological limitations 70 or because evaluation is ongoing. 73 Shared Decision-Making. Historically, medicine has taken a paternalistic approach to patient-provider relationships, with clinicians deciding what is best for the patient based on their expertise and the scientific evidence.…”

Use of narrative medicine to identify key factors for effective doctor–patient relationships in severe asthma

“…Further, when the relation is difficult, RSs proposed less frequently a change of therapy compared to easy ones. This tendency could be linked to the prescription of biological therapies that are considered challenging because of their high costs and the requirement of several subcutaneous injections performed in the hospital [31]. Other narratives from this project revealed in details that patients who refused a change therapy were not able to perform their daily activities and hobbies as they wished, so the relation remained difficult.…”

Children with Asthma and Communication with Healthcare Provider: Instrument Development

“…Multiple barriers often influence the communications between children with chronic illnesses and their HCPs during clinical encounters. One barrier associated with limited patient-clinician communication is perceived behaviors of HCPs (Apter et al, 2017;Shelley et al, 2009). Four themes emerged from this Shelly et al study indicating whether and how communication about traditional and complementary medicine took place between patients and HCPs.…”