The PeRson EmPowered Asthma Relief ( PREPARE ) study: Empowering - - PowerPoint PPT Presentation

The PeRson EmPowered Asthma Relief (PREPARE) study: Empowering patients to improve their control

Juan Carlos Cardet, MD, MPH Assistant Professor of Medicine Division of Allergy and Immunology Morsani College of Medicine University of South Florida

COI Disclosures

• No conflicts of interest to disclose

Asthma facts

• Asthma is the most common chronic disease of the

lungs, and affects the airways

• 1 out of 12 Americans have asthma
• Almost half of patients with asthma

have an asthma attack each year

(CDC 2015)

• African Americans and Hispanics

have a higher burden of asthma-related illnesses and deaths

(Akinbami 2011)

Current asthma guidelines are not patient-centered

• Guidelines recommend daily controller

therapy for all but the mildest cases.

• Usually with inhaled corticosteroids (ICS)
• Daily controller ICS therapy decreases

asthma attacks and deaths.

• However, guidelines don’t adapt to

Modified from Expert Panel Report 3, 2007

changes in asthma symptoms.

• Patients fill one quarter of daily

therapy prescriptions per year.

Apter 2011

• Many interventions have failed

to improve adherence.

Modified from the GINA guidelines 2018

Patient partner engagement: patients’ preferences for therapy

Controller therapy: prevents asthma symptoms

• --vs.---

Rescue therapy: quick relief

• However, during interviews patient partners say:

⁻ Dislike the controller vs. rescue inhaler distinction ⁻ They don’t want to use their inhalers when they don’t have to ⁻ Concerned about using inhaled corticosteroids (ICS) ⁻ They don’t like taking too much medicine

Empowering patients: the PeRson EmPowered Asthma Relief (PREPARE) study

• Patient-Activated Reliever-Triggered Inhaled CorticoSteroid

(PARTICS) strategy

• Symptom-based use of ICS triggered

by use of a rescue therapy

• Bypasses the issue of adherence
• Patients control their treatment

Patient partner engagement: targeting outcomes that matter to patients: asthma attacks

”Asthma attacks are awful – kids miss school, I miss work and I need someone to take care of the kids when I have to go to the ER.” "My employer said to me 'You have a choice to make: either be at work or be at home.’ The realistic fact is I am at home and I am broke, but my children's well-being means the world to me."

• Asthma attacks:
• Risky, anxiety-provoking to patients and their families
• Stressful on health care providers (Lane 2006)
• Increase risk of death from asthma (Jorgensen 2003)
• Greatest cost to the health care system (Reddel 2009)

Our patient partners

Table E-3. Patient Partners

African American Patient Partners Hispanic/Latino Patient Partners

• Bridget H, age 48, Massachusetts,
• Sonia O, age 49, Massachusetts, school

volunteer: has asthma, as does her cafeteria worker: asthma since age 10, daughter and her children have asthma

• Matt G, age 21, North Carolina, college
• Jose F, age 53, Massachusetts:

student: has had asthma since age 10 unemployed due to asthma

• Suzanne M, 50+, Minnesota, nonprofit
• Nicholas P, age 14, Florida, high school

director: asthma for 50+ years, always student: asthma since age 1, affects carries rescue inhaler school, sports, sleeping

• Kathy W, age 30, Massachusetts, asthma
• Margarita L, age 50+, Massachusetts,

case coordinator: asthma for 2 years, asthma educator: mother of son with interferes with daily activity and exercise asthma for 15+ years

• Opal T, age 38, Massachusetts, video
• Richard R, age 19, Arizona, college

production: asthma "feels like I am student: asthma since age 6, takes breathing through a straw," affects my inhalers everywhere, can't visit homes work with cats

• Mary W, age 50+, Massachusetts, asthma • David T, age 38, Massachusetts, art

educator: asthma for 10+ years, has director: asthma since age 8 causing three children with asthma much missed school and work

• Why the patient partners are involved:

“If t his works it will change people’s lives including my son’s and sister’s” “I can make a difference” “I have been able to share my experience and knowledge” “It’s rewarding to see how the patient partners are being heard”

Patient partner involvement

• Patient Partners – patients with asthma or caregivers
• 7 African American, 7 Hispanic/Latino (2 Spanish-speaking only)
• 2 patient partner project managers
• 1 patient advisory specialist consultant
• Intervention selection
• Questionnaire wording
• Patient partners are engaged in all
• Study material vetting
• Wording of survey reminders

aspects of the study

• Choosing the outcome
• Patient partners have a monthly call (English and Spanish)

Patient partner impact

• Patients Engaged since protocol development

– Explained what outcome was important to them (asthma attacks)

• Suggested doing a pilot study– to test study processes

– Major changes to the full study after the pilot

• Shortened monthly questionnaire
• Relaxed survey login procedures
• Developed participant education tools and study

materials:

– Order of video messages – Best pouches to use – Recruitment flyer wording – Patient take home packet

Patient partner impact (continued)

• Blood draw

– Patient partners developed wording for the study coordinators to use to explain why we want blood drawn

• Emphasized simplicity of consent language
• Monthly survey compliance

– Survey reminder messages – adding a lottery to enhance response rate

• Retention

– Semi annual “Thank You” card

Next steps for disseminating results

Summary

• Asthma is a serious and burdensome disease,

particularly in highly-impacted minority populations.

• Guidelines are difficult to enforce, and daily controller

therapy with inhaled corticosteroids is underused; we hypothesize PARTICS will work by empowering patients to use therapy how they prefer and want to use it.

• Patients’ input is invaluable in study design, and ensures

we address relevant issues with realistic solutions.

Questions? … Thanks!