Development and assessment of a low literacy, pictographic asthma action plan with clinical automation to enhance guideline-concordant care for children with asthma.

OBJECTIVE: Asthma is characterized by reversible pulmonary symptoms, frequent hospitalizations, poor quality of life, and varied treatment. Parents with low health literacy (HL) is linked to poor asthma outcomes in children. Recent practice updates recommended inhaled corticosteroids for the management of persistent asthma, but guideline-concordant care is suboptimal. Our aim was to develop and assess an Asthma Action Plan (AAP) that could serve as an individualized plan for low HL families and facilitate guideline-concordant care for clinicians. METHODS: We followed the National Institute of Health 5-step "Clear & Simple" approach to develop the Uniformed Services AAP. Our AAP included symptom pictographs (dyspnea, cough, sleep, activity) and guideline-concordant clinical automation tools. Caregivers assessed the pictograms for validity (transparency of ≥ 85%; translucency score ≥ 5; and ≥ 85% recall). Readability was assessed using 7 formulas. (<6th Grade was acceptable). Comprehensibility, design quality, and usefulness was assessed by caregivers using the Consumer Information Rating Form (CIRF) (>80% was acceptable). Understandability and actionability was assessed by medical librarians using the Patient Education Materials Assessment Tool-Printable (>80% was acceptable). Suitability was assessed by clinicians using the modified Suitability Assessment of Materials (SAM) instrument (>70% was superior). RESULTS: All 12 pictograms were validated (N = 118 respondents). Readability demonstrated a 4th grade level. Overall CIRF percentile score = 80.4%. Understandability and Actionability = 100%. Suitability score = 75%. CONCLUSIONS: Our AAP was formally endorsed by the Allergy & Asthma Network. The Uniformed Services AAP is a novel tool with embedded clinical automation that can address low HL and enhance guideline-concordant care.

Development and Assessment of a Low Literacy, Pictographic Cyclic Vomiting Syndrome Action Plan.

OBJECTIVE: To develop and assess an evidence-based, individualized Cyclic Vomiting Syndrome Action Plan (CVSAP) to optimize both preventative and acute care. STUDY DESIGN: This implementation science project synthesized a combination of clinical practice guidelines, published literature, and clinical experience by a team of CVS clinicians to develop the CVSAP. The tool was developed to include validated pictograms and an automatic, embedded, weight-based dosing calculator to output acute management recommendations. The final version of the CVSAP was tested by patients/caregivers, readability calculators, medical librarians, and clinicians using validated metrics. RESULTS: All pictograms met the criteria for inclusion in the CVSAP. A composite readability score of 5.32 was consistent with a fifth-grade level. Patients/caregivers (n = 70) judged the CVSAP to be of high quality with consumer information rating form rating of 84.2%. Six medical librarians rated the CVSAP to have 93% understandability and 100% actionability, and 33 clinicians completing the SAM generated a suitability rating of 87.5%. CONCLUSIONS: The CVSAP visually highlights individualized care plan components to facilitate optimized preventative and acute CVS care. Further investigation will determine if CVSAP increases caregiver confidence and compliance in home management and improves quality of life and clinical outcomes for patients with CVS.

Development and assessment of a low-health-literacy, pictographic adrenal insufficiency action plan.

OBJECTIVES: Adrenal insufficiency (AI) is an overall rare disorder characterized by the chronic need for pharmacotherapy to prevent threat to life. The Pediatric Endocrine Society has recommended the use of clinical action tools to improve patient education and help guide acute management of AI. We aimed to develop and assess an easy-to-use, patient-friendly, evidence-based, personalized pictogram-based adrenal insufficiency action plan (AIAP) to aid in the management of AI in children. METHODS: Patients/caregivers (P/Cs) responded to surveys which measured the concepts of transparency, translucency, and recall in order to assess the pictograms. Readability was assessed using six formulas to generate a composite readability score. Quality was graded by P/Cs using the Consumer Information Rating Form (CIRF) (>80% rating considered acceptable). Understandability and actionability was assessed by medical librarians using the Patient Education Materials Assessment Tool-Printable (PEMAT-P) (>80% rating was acceptable). Suitability was evaluated by clinicians using the Suitability Assessment of Materials (SAM) instrument (>70% rating considered superior). RESULTS: All pictograms met criteria for inclusion in the AIAP. Composite readability score=5.4 was consistent with a fifth-grade level. P/Cs (n=120) judged the AIAP to be of high quality with CIRF rating=85.2%. Three medical librarians rated the AIAP to have 100% understandability and 100% actionability. Thirty-three clinicians completing the SAM generated a suitability rating of 90.0%. CONCLUSIONS: The AIAP visually highlights individualized care plan components to facilitate optimized preventative and acute AI care. Further investigation will determine if AIAP improves clinical outcomes for patients with AI.

Development and Assessment of a Pictographic Pediatric Constipation Action Plan.

OBJECTIVE: To assess the Uniformed Services Constipation Action Plan (USCAP) as an evidence-based, personalized, clinical action tool with pictograms to aid clinicians and families in the management of functional constipation. STUDY DESIGN: The USCAP facilitates the management functional constipation by using a health literacy-informed approach to provide instructions for pharmacotherapies and lifestyle modifications. This study included part 1 (pictogram validation) and part 2 (assessment). For part 1, pictogram transparency, translucency, and recall were assessed by parent survey (transparency ≥85%, mean translucency score ≥5, recall ≥85% required for validation). For part 2, the USCAP was assessed by parents, clinical librarians, and clinicians. Parental perceptions (n = 65) were assessed using the Consumer Information Rating Form (17 questions) to gauge comprehensibility, design quality and usefulness. Readability was assessed by 5 formulas and a Readability Composite Score was calculated. Clinical librarians (n = 3) used the Patient Education Materials Assessment Tool to measure understandability (19 questions) and actionability (7 questions) (>80% rating was acceptable). Suitability was assessed by clinicians (n = 34) using Doak's Suitability Assessment of Materials (superior ≥70% rating). RESULTS: All 12 pictograms demonstrated appropriate transparency, translucency, and recall. Parental perceptions reflected appropriate comprehensibility, design quality, and usefulness. The Readability Composite Score was consistent with a fifth-grade level. Clinical librarians reported acceptable understandability and actionability. Clinicians reported superior suitability. CONCLUSIONS: The USCAP met all criteria for clinical implementation and future study of USCAP implementation for treating children with chronic functional constipation.