Evolution of a research team: the patient partner perspective.

INTRODUCTION: Despite a movement toward the inclusion of patient partners or advisors as part of the research team in all funded studies, few publications have discussed patient engagement from the patient partners' perspective. METHODS: Qualitative interviews were conducted by independent qualitative researchers to collect and summarize the experiences and perspectives of the 16 Patient Partners (PPs) on the study team for PeRson EmPowered Asthma RElief (PREPARE), a large, pragmatic study of 1200 African American/Black (AA/B) and Hispanic/Latinx (H/L) adults with asthma. This study was funded by the Patient-Centered Outcomes Research Institute. RESULTS: This paper, authored by the PPs themselves, summarizes qualitative interview findings. The journey of the PREPARE PPs began with a desire to learn more about asthma and advocate for other individuals with asthma. Many challenges, including intimidation and lack of trust, were overcome as the research team prioritized building a comfortable environment in which PPs' lived experiences, opinions, and cultural beliefs are valued, and in which PP voices are centered and respected. Over time, the PPs gained confidence in expressing ideas and feedback, and in taking ownership of their role as valued members of the research team. The PP experience has had tremendous personal and professional impact on the PPs themselves, while also modeling a change in the way researchers and PPs relate to and partner with each other. CONCLUSION: The partnership between PPs and researchers in the PREPARE study has elevated the PP role from external advisors to integral and empowered members of a collective research team, and the partnership developed and evolved over time.

Patients and caregivers who have lived with a condition have an important and unique perspective researchers should consider. To this end, patients and caregivers have expanded their involvement in the design and conduct of clinical research, joining research teams and being engaged in the research process from start to finish. Researchers have reported on the positive impact that these "patient partners" or "patient advisors" have on research. But few papers report on the impact on the patient partners/advisors from being on a research team.Here we report the lived experiences of the 16 Patient Partners who served on the research team for a large study of 1200 African American/Black (AA/B) and Hispanic/Latinx (H/L) adults with asthma. These Patient Partners offered their input over 7 years, spanning from study design, study conduct, understanding results, to sharing results.To understand the Patient Partners' experiences, we conducted interviews asking about their journey on the research team. Motivations and reasons they became Patient Partners Initial experiences with the research team If and how over time, they became comfortable and developed confidence If and how the research team made them feel valued and respected The personal and professional impact of being a Patient Partner Their advice to researchers and fellow patients considering including or joining as Patient Partners or advisors By reporting the perspectives of these 16 Patient Partners, we hope to support continued movement toward broader and better inclusion of patients and caregivers on research teams.

Reliever-Triggered Inhaled Glucocorticoid in Black and Latinx Adults with Asthma.

BACKGROUND: Black and Latinx patients bear a disproportionate burden of asthma. Efforts to reduce the disproportionate morbidity have been mostly unsuccessful, and guideline recommendations have not been based on studies in these populations. METHODS: In this pragmatic, open-label trial, we randomly assigned Black and Latinx adults with moderate-to-severe asthma to use a patient-activated, reliever-triggered inhaled glucocorticoid strategy (beclomethasone dipropionate, 80 µg) plus usual care (intervention) or to continue usual care. Participants had one instructional visit followed by 15 monthly questionnaires. The primary end point was the annualized rate of severe asthma exacerbations. Secondary end points included monthly asthma control as measured with the Asthma Control Test (ACT; range, 5 [poor] to 25 [complete control]), quality of life as measured with the Asthma Symptom Utility Index (ASUI; range, 0 to 1, with lower scores indicating greater impairment), and participant-reported missed days of work, school, or usual activities. Safety was also assessed. RESULTS: Of 1201 adults (603 Black and 598 Latinx), 600 were assigned to the intervention group and 601 to the usual-care group. The annualized rate of severe asthma exacerbations was 0.69 (95% confidence interval [CI], 0.61 to 0.78) in the intervention group and 0.82 (95% CI, 0.73 to 0.92) in the usual-care group (hazard ratio, 0.85; 95% CI, 0.72 to 0.999; P = 0.048). ACT scores increased by 3.4 points (95% CI, 3.1 to 3.6) in the intervention group and by 2.5 points (95% CI, 2.3 to 2.8) in the usual-care group (difference, 0.9; 95% CI, 0.5 to 1.2); ASUI scores increased by 0.12 points (95% CI, 0.11 to 0.13) and 0.08 points (95% CI, 0.07 to 0.09), respectively (difference, 0.04; 95% CI, 0.02 to 0.05). The annualized rate of missed days was 13.4 in the intervention group and 16.8 in the usual-care group (rate ratio, 0.80; 95% CI, 0.67 to 0.95). Serious adverse events occurred in 12.2% of the participants, with an even distribution between the groups. CONCLUSIONS: Among Black and Latinx adults with moderate-to-severe asthma, provision of an inhaled glucocorticoid and one-time instruction on its use, added to usual care, led to a lower rate of severe asthma exacerbations. (Funded by the Patient-Centered Outcomes Research Institute and others; PREPARE ClinicalTrials.gov number, NCT02995733.).

Nebulizer Use by Black and Latinx Adults with Moderate to Severe Asthma.

BACKGROUND: Generally, a short-acting beta-2 agonist (SABA) delivered via metered-dose inhaler (MDI) is recommended for quick relief of asthma symptoms. However, in the PeRson EmPowered Asthma RElief (PREPARE) pragmatic trial, 67% of patients reported having used a nebulizer for SABA administration. OBJECTIVE: To understand preferences, experiences, and decision making regarding the use of nebulizers in Black and Latinx adults with uncontrolled asthma. METHODS: We interviewed 40 of the 1,201 PREPARE patients employing a matrix analysis. Those interviewed were Black (n = 20) and Latinx (n = 20) adults with uncontrolled asthma seeking primary or specialty care in clinics throughout the United States. Data were analyzed used a Rapid Assessment Procedures qualitative methodology, informed by grounded theory. RESULTS: Substudy participants, on average, reported using a nebulizer 3.5 times/wk. Daily use was common, and frequency ranged from less than daily to up to 6 times daily. Nearly all participants reported a longstanding history of nebulizer use. Participants tended to use their nebulizer at home, and some shared it with others in the home. Many reported preferring a nebulizer over an MDI for relief of severe symptoms and to avoid emergency room visits or hospitalizations. The extent to which cost affected nebulizer use varied among participants. CONCLUSIONS: Despite asthma guideline recommendations that MDIs be used rather than nebulizers for SABA administration, nebulizer use was common among PREPARE study participants. Clinicians should explore patients' history and experiences with nebulizer use as part of evaluation of asthma control.