COPD Foundation CIRCLES (Clinicians Improving the Rural COPD Landscape through Education in Self-care) Program
- Goal 1: Empower people with COPD, their families, and caregivers to recognize and reduce the burden of COPD.
- Increase the effectiveness and variety of outreach communication campaigns and activities that utilize evidence-based approaches to raise awareness of COPD, particularly among those at high risk, and help people diagnosed with COPD manage the disease
- Expand opportunities to increase COPD awareness across the public-private spectrum
- Develop and encourage the use of a written, patient-centric COPD management plan tool, with appropriate cultural and health literacy considerations, which can be customized with input from the patient's health care provider(s)
- Improve access to care for people with COPD, particularly for those in hard-to reach areas
Activity DescriptionThe COPD Foundation has developed a unique self-management support tool, the COPD Pocket Consultant Guide (PCG) mobile app, to address the limited support and awareness that many people with COPD experience, particularly those in rural locations. The PCG app includes both patient/caregiver and health care professional tracks. The tool is available for free download from either the Apple AppStore or Google Play.
The project was first designed to leverage our COPD PCG mobile app and to develop complementary materials (the COPD Foundation CIRCLES Toolkit) for use in the rural U.S. to 1) improve disease self-management in the home and 2) improve communication between patients with COPD and their primary care health care teams.
The Year 1 CIRCLES Toolkit included:
-- An interactive game board that patients used to walk them through toolkit videos and the app, containing steps toward increased self-management.
-- Videos for both HCPs and patients. The team created introductory videos for each group and four additional videos explaining the following topics: medications, exercise and activity tracking, the My COPD Action Plan, the "For my next visit" tool, and paper versions of the My COPD Action Plan and Report Signs of Exacerbations Card.
In Year 2, the program toolkit from the CIRCLES I phase was redesigned to include additional self-management support tools, including a CIRCLES Fit Kit, adding a tote bag, an interactive workbook, a pedometer, datebook, notebook, and other health and wellness items, and an updated game board.
The COPD National Action Plan (CNAP) lays out a comprehensive framework for addressing COPD in the U.S. While progress has been made in growing the public’s awareness of COPD, to fully achieve Goal 1, we must reach those diagnosed with the disease and provide them with the knowledge and tools they can use to reduce the burden. Our education and support tools for patients provide answers to key questions, such as how to spot signs of exacerbations and what actions to take when these symptoms are identified, how to cope with their COPD diagnosis, understanding the different COPD medicines, and much more. Additionally, they provide practical tools that patients leverage to track symptoms and activities of daily living, prepare for appointments, learn how to use their inhalers and nebulizers, and access exercise videos. Companion tools for clinicians, primarily the printed and clinician track of the COPD Pocket Consultant Guide (PCG) app and supportive projects such as this one, seek to achieve Goal 2 of the CNAP by presenting easy-to-use information about quality COPD care and by facilitating collaborative conversations, sharing best practices, and implementing new elements of COPD care designed to improve patient outcomes.
Cost and Funding SourcesYear 1 of this project was funded by a $50,000 grant from NHLBI and supported by $57,000 of in-kind work; year 2 was funded by industry for $100,000.
Impact AnalysisYear 1: Project materials were developed following feedback via surveys (116 impacted individuals and 50 HCPs) and focus groups from rural individuals with COPD and health care professionals who provide direct COPD patient care in New Mexico and Colorado. We also employed the volunteer support of an expert advisory board that included people with COPD and health care professionals from a variety of disciplines.
Many social determinants of health created barriers to accessing care and using self-management tools, including low income and poverty; low educational attainment; and inadequate infrastructure, such as limited access to high-quality Wi-Fi.
People with COPD and providers differed on what they believed would help with COPD self-management--People with COPD: advice on avoiding flare-ups; a way to track symptoms; “How to” videos; A “My COPD Action Plan.”
Health Care Providers: a patient-appropriate explanation of disease process; information on what patients can expect; customizable action plans; videos on device management; advice on quitting smoking. (Interestingly, this was last on the patient list of preferences for self-management content.)
Materials were piloted in two rural primary care health centers.
Year 2: Year 2 included 400 individuals across 12 U.S. states: Alabama, Indiana, Kansas, Michigan (5), Minnesota (2), Mississippi, North Carolina (3), North Dakota, Ohio, Oklahoma, South Carolina, West Virginia (2). Our recruitment expanded beyond primary care to pulmonary rehabilitation centers across these states. In addition to the My COPD Journey Game Card, these participants were provided with a COPD Fit Kit, including a pedometer and other health and wellness items as well as a workbook designed to be used as part of the pulmonary rehabilitation education curriculum.
From survey respondents:
-- Nearly 80 percent of provider respondents reported an increase in the frequency and quality of patient interactions and education.
-- 95 percent of participants reported an improvement in communications with their health care team.
-- 96 percent of respondents reported increased confidence in their COPD self-management.
Multiple sites have requested a continuation of CIRCLES II due to the positive impact it had on their patients and staff:
-- Site staff reported an improvement in the quality of their patient education after completing CIRCLES
-- COVID-19 resulted in pulmonary rehab centers closing, consolidating, and reducing/eliminating their budgets for materials, causing providers to have fewer resources to offer their patients. CIRCLES alleviated this burden by providing comprehensive educational materials at no cost to the sites
Advice or Lessons LearnedLessons learned Year 1:
-- Many challenges remain for those living in rural America, particularly with respect to the use of electronic supports (e.g., apps). Participants clearly needed a low-tech option to best participate.
-- COVID-19 created significant challenges to project implementation; telehealth (often without video) made patient and provider recruitment a challenge.
-- Primary care health care professionals, already pressed for time, found it challenging to devote time to this project in the era of COVID-19, although this would likely persist to some extent beyond the initial months of the pandemic.
-- Patient and provider input is essential to program success and ensuring the usefulness of materials.
Lessons learned Year 2:
-- We will consider extending the implementation portion of the program from 6 months to 1 year (and longer) in order to allow sites the time to explore the use of project materials, reach the most people, and adapt their approaches to fit their organizational needs.
-- Recruiting pulmonary rehabilitation centers enabled us to reach many more people in Year 2 when compared to Year 1. In the next iteration, it will be important to expand recruitment to capture a wider cross-section of the United States; we would also consider additional disadvantaged populations in suburban locations with limited access to care.
-- The project team will consider offering educational materials in lieu of stipends given some sites were not allowed or did not want to accept the stipend. These funds could also be redirected toward creating more kits for distribution to participating sites.
-- We will likely consider expanding the site staff’s responsibilities to include ensuring completion of patient feedback surveys as this may have helped to improve low response rates.
-- The project team will employ email agreements instead of contracts to reduce administrative burden as well as sites’ hesitation to participate in the program.