PC2184: The Cystic Fibrosis Action Plan: A Low Health Literacy, Pictographic Self-management Tool with Clinical Automation

Purpose/Objectives: Cystic fibrosis (CF) is a recessive genetic defect in transmembrane chloride transportation which leads to multisystem exocrine dysfunction. Downstream effects include: chronic bacterial infections leading to bronchiectasis, malabsorption due to pancreatic insufficiency, hepatobiliary and bone disease secondary to obstruction, mental health issues, and early death. As continued advances in management and treatment have resulted in increased life expectancy, clinicians are challenged to recommend progressively complex management strategies involving multiple interventions, leading to increasingly complicated and time-consuming daily regimens for patients.
We hypothesized that an individualized action plan would be feasible and help optimize care for patients with CF. We aimed to develop and assess an evidence-based, personalized, pictogram-based CF Action Plan (CFAP) to aid patients and caregivers in the preventative and acute care management of CF and to facilitate implementation of guideline-concordant care by medical teams.

Design/Methods: We followed the National Institute of Health 5-step “Clear & Simple” approach to develop the Uniformed Services CFAP. Our CFAP included symptom pictographs (dyspnea, cough, sputum character, activity, eating, defecation, medication adherence) and automation tools. This project produced the Cystic Fibrosis Action Plan (Figure 1A). The tools leveraged background javascript coding to facilitate: pop up of quick response (QR) code “Patient How To” videos demonstrating proper use of respiratory treatments based on the medicine selected, automatic dosing for selected medicines, and an automatic nutrition calculator to estimate the patient's daily calories needed (Figure 1B).
Caregivers assessed the pictograms. Validity requirements: transparency of ≥ 85%; translucency score ≥ 5; and ≥ 85% recall.
Readability was assessed using 7 formulas. ( < 6th Grade was acceptable). Comprehensibility, design quality, and usefulness by caregivers using the Consumer Information Rating Form (CIRF) (>80% rating was acceptable). Understandability and actionability by medical librarians using the Patient Education Materials Assessment Tool-Printable (PEMAT-P) (>80% rating was acceptable). Suitability by clinicians using the modified Suitability Assessment of Materials (SAM) instrument (>70% rating was superior).

Results: Pictogram validation: All 18 pictograms were validated (N=118 respondents).

Assessment: 1) Readability rated at 4th grade level. 2) Caregivers (n=50) showed an overall CIRF percentile score=82%. 3) Medical librarians (N=2) scored the tool as 100% Understandability and 100% Actionability. 4) Clinicians (N=20) generated a superior suitability score=80%. The Cystic Fibrosis Action Plan was formally endorsed by the Cystic Fibrosis Research Institute.

Conclusion/Discussion: The Uniformed Services CFAP is a novel tool with embedded clinical automation that can address low HL and enhance guideline concordant care for the management of patients with Cystic Fibrosis.