{'fraction_non_alphanumeric': 0.024927015495171793, 'fraction_numerical': 0.006961598922075006, 'mean_word_length': 5.637853949329359, 'pattern_counts': {'":': 0, '<': 0, '<?xml version=': 0, '>': 0, 'https://': 0, 'lorem ipsum': 0, 'www.': 0, 'xml': 0}, 'pii_count': 0, 'substrings_counts': 0, 'word_list_counts': {'cursed_substrings.json': 2, 'profanity_word_list.json': 0, 'sexual_word_list.json': 0, 'zh_pornsignals.json': 0}}
The Sickle Cell Pain Action Plan: A low health literacy, pictographic tool to enhance self‐management, and guideline concordance

To the Editor: The negative impact of healthcare disparities, specifically lowhealth literacy, on clinical outcomes related to sickle disease (SCD) is well described.1–7 Health literacy (HL) refers to an individual’s ability to acquire, understand, and make informed decisions using health information. The construct of health literacy extends beyond regular literacy—the ability to read and write. Health literacy describes a person’s capacity to navigate the healthcare system, to advocate for the patient in an informed capacity, and to apply health concepts learned in the clinical setting to self-management at home.8 In 2019, the American Society of Hematology updated the SCD guidelines to recommend the use of patient and family engagement strategies that foster guideline adoption by leveraging shared-decision making and patient-centeredness including specific innovations that can train patients.9 Clinical action plans represent one such unique tool with thepotential to address theneedsof patientswith lowhealth literacy, summarizemedical team recommendations onto a single page, and provide a platform with technologic enhancements to improve knowledge transfer and self-management.8,10–14 Thepurposeof this letter is to describe thedevelopment and assessment of the Uniformed Services Sickle Cell Pain Action Plan using the National Institute of Health (NIH) 5-step patient education materials development process: the “Clear & Simple” campaign.15 Step 1: Define the target audience We identified patients with SCD and their caregivers as the primary target audience. Second, we identified that clinicians could benefit from access to a clinical action plan with built-in clinical decision support enhancements to facilitatemanagement of SCD. Step 2: Conduct target audience research Our target audience research identified a large proportionof lowHL amongpatientswithSCDand their caregivers.1–7 Further investigation recognized interest among clinicians for the use of mobile health technologies in patients with SCD.16 Step 3: Develop a concept for the product We used the Implementation Research Logic Model to conduct a series of iterative meetings to identify, design, and assess our solution strategy.17 Our primary goal was to address low health literacy in patients with SCD by recognizing potentially fundamental patient needs such as poor comprehension of pharmacotherapy or when to go to the emergency department. Brega has shown that repeated key messages and points of contact can help to break down communication barriers to accessing care (a commondisparity associatedwith low HL), so we added a digital feature that displays the clinical team member contact information in multiple sections of the plan.18 We added clinical enhancements to assist the medical team including drop–down menus with commonly used pharmacotherapy options, free text boxes for care plan personalization (e.g., nonpharmacotherapy options), and a clickable quick-response (QR) code that displays an emergency room SCD management algorithm adapted from the American College of Emergency Physicians point-of-care tool.19 Finally, we incorporated these patient and clinician-focused features into a green–yellow–red traffic light motif. Step 4: Develop content and visual design features This NIH process recommends the development of content and visual aids to help mitigate the risks of low health literacy. The goal was to present inclusive, low literacy language coupledwith lowHLelements, such as pictograms and other multimedia, to objectively guide patients/caregivers in the subjectively complex recognition of SCD symptoms at home. The pictogramswould depict clinical symptomprogression from green to yellow to red (e.g., active to less active to not active). A “teach-back” video for patients/caregivers was embedded as a clickable QR code to guide patients in the stepwise use of the clinical action plan at home. Step 5: Pretest and revise draft materials The final step of the “Clear and Simple” campaign recommends assessment (i.e., a “Pretest”) of the clinical action plan prior to implementation. We followed recommendations from the NIH and the American Healthcare Research and Quality (AHRQ) group to use validated instruments to ensureourplanmeets standards that address low health literacy including: