PC3023: The Sickle Cell Pain Action Plan: A Low Health Literacy, Pictographic Tool to Enhance Self-management and Guideline Concordance

Purpose/Objectives: Sickle Cell Disease (SCD) is a genetic disorder of the blood affecting more than 100,000 Americans that causes red blood cells to take on a sickle shape leading to a cycle of constant clumping and lysing of cells. This cycle disrupts oxygen delivery to tissues and can lead to: veno-occlusive disease (VOD) pain crises, chronic pain, strokes, acute chest syndrome, organ damage, and early death. VOD is a hallmark of SCD causing severe, debilitating pain that can contribute to lower healthcare-related quality of life, increased medical costs, and decreased productivity.
We hypothesized that an individualized action plan would be feasible and help optimize pain care for patients with SCD. We aimed to develop and assess an evidence-based, personalized, pictogram-based Sickle Cell Pain Crisis Action Plan (SCPAP) to aid patients and caregivers in the preventative and acute care management of pain episodes related to SCD.

Design/Methods: We followed the National Institute of Health 5-step “Clear & Simple” approach to develop the Uniformed Services SCPAP. Our SCPAP included symptom pictographs (dyspnea, cough, sputum character, activity, eating, defecation, medication adherence) and automation tools. The tools leveraged background javascript coding to facilitate: pop up of quick response (QR) code “Patient How To” videos demonstrating proper use of the action plan, automatic body surface area calculation, and pop-up of a validated emergency department SCD acute management algorithm .
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.

Assessment: 1) Readability rated at 5th grade level. 2) Caregivers showed an overall CIRF percentile score=80%. 3) Medical librarians (N=2) scored the tool as 100% Understandability and 100% Actionability. 4) Clinicians generated a superior suitability score=93%. The results are summarized in Table 1. The Sickle Cell Pain Action Plan was formally endorsed by the Sickle Cell Disease Association of America (Figure 1).

Conclusion/Discussion: The Uniformed Services SCPAP is a novel tool with embedded clinical automation that can address low HL and enhance guideline concordant care for the management of patients with Sickle Cell Pain Crisis.