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.
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.
Division of Pulmonary, Allergy, & Critical Care Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA 19104, USA; Department of Medicine, 3400 Spruce St, Philadelphia, PA 19104, USA; Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA. Electronic address: apter@mail.med.upenn.edu.
Andrea J
AJ
Apter
Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA; Department of Biostatistics and Epidemiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA 19104, USA.
Knashawn H
KH
Morales
Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA; Department of Biostatistics and Epidemiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA 19104, USA.
Xiaoyan
X
Han
Division of Pulmonary, Allergy, & Critical Care Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA 19104, USA; Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Luzmercy
L
Perez
Division of Pulmonary, Allergy, & Critical Care Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA 19104, USA; Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Jingru
J
Huang
Division of Pulmonary, Allergy, & Critical Care Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA 19104, USA; Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Grace
G
Ndicu
Division of Pulmonary, Allergy, & Critical Care Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA 19104, USA; Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Anna
A
Localio
Temple Physicians, Inc., Temple University Health System, Philadelphia, PA 19129, USA.
Alyssa
A
Nardi
Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA; Department of Family Medicine and Community Health, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA 19104, USA.
Heather
H
Klusaritz
Department of Medicine, 3400 Spruce St, Philadelphia, PA 19104, USA; Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Marisa
M
Rogers
School of Arts and Sciences, University of Pennsylvania, Philadelphia, PA, USA.
Alexis
A
Phillips
Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA; Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, PA, USA.
Zuleyha
Z
Cidav
Department of Medicine, 3400 Spruce St, Philadelphia, PA 19104, USA; Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA; Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, PA, USA; Wharton School of Business, University of Pennsylvania, Philadelphia, PA, USA.
J Sanford
JS
Schwartz
D000328:Adult; D000368:Aged; D001249:Asthma / Q000628:therapy*; D002908:Chronic Disease; D003142:Communication; D015897:Comorbidity; D003266:Continuity of Patient Care / Q000458:organization & administration; D004636:Emergency Service, Hospital / Q000706:statistics & numerical data; D005260:Female; D005541:Forced Expiratory Volume; D006801:Humans; D008297:Male; D008875:Middle Aged; D062526:Patient Navigation / Q000458:organization & administration*; D011203:Poverty; D011788:Quality of Life; D012107:Research Design; D012648:Self Care; D012720:Severity of Illness Index; D014505:Urban Population
Asthma; Asthma control; Asthma-related quality of life; Health literacy; Inner-city asthma; Patient advocate