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

  • Patrick T. Reeves ORCID logo EMAIL logo , Ashley C. Packett , Carolyn Sullivan Burklow , Sofia Echelmeyer and Noelle S. Larson
Published/Copyright: September 30, 2021
Journal of Pediatric Endocrinology and Metabolism
From the journal Journal of Pediatric Endocrinology and Metabolism Volume 35 Issue 2

Abstract

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.

Keywords: adrenal crisis; adrenal insufficiency; CAH; discharge planning; patient education; pictogram
Corresponding author: Patrick T. Reeves, MD, Department of Pediatrics, Walter Reed National Military Medical Center, 8901 Rockville Pike, Bethesda, MD, 20814, USA, Phone: (301) 295-4959, Fax: (816) 575-7527, E-mail:

Disclaimer: This work was prepared as part of the official duties of Drs. Reeves, Packett, Burklow, Larson, and Ms. Echelmeyer, who are employed by the United States Army, Air Force, and Department of Defense. The identification of specific products or scientific instrumentation is considered an integral part of the scientific endeavor and does not constitute endorsement or implied endorsement on the part of the author(s), DoD, or any component agency. The views expressed in this manuscript are those of the authors and do not necessarily reflect the official policy of the Department of Defense or the U.S. Government.

Acknowledgements

We would like to acknowledge our institution’s medical librarians for their skilled assistance in evaluating the tool described in this manuscript. Our project would never have become a success without your expert help! To: Sarah Clarke, MSLS, AHIP; Emily Shohfi, MLIS, AHIP, CHIS; and Michele Mason-Coles, MLS, CHIS. Thank you to Nancy Reeves for your constant support and encouragement.

  1. Research funding: There was no funding support beyond the salary disclaimers, as above, for the completion of this project. Salary support was provided for Drs. Reeves, Packett, Burklow, Larson, and Ms. Echelmeyer by the United States Department of Defense.

  2. Author contributions: Patrick Reeves conceptualized the study, designed the clinical adrenal insufficiency action plan, patroned the pictograms, created the survey tool, conducted the interviews, interpreted the data analysis, drafted the manuscript, and approved the final manuscript. Ashley Packett served as an expert in management of chronic pediatric diseases, drafted and edited the introduction, critiqued the symptom action tool based on clinical quality, recorded familiarization videos for patients and clinicians, and approved the final manuscript. Carolyn Sullivan Burklow served as an expert in management of chronic pediatric diseases; critiqued and edited the symptom action tool based on clinical quality, and approved the final manuscript. Sofia Echelmeyer designed the pictographs and served as the medical graphic artist in this project. She provided oversight for the plan development and approved the final version of the manuscript. Noelle Larson served as an expert in adrenal insufficiency management; helped design and edit the symptom action tool based on medical accuracy and clinical quality, tested the AIAP product for clinical accuracy, edited the scripts for associated educational videos, edited and approved the final manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

  3. Competing interests: The authors have no financial relationships relevant to this article to disclose. There is no prior presentation of study data as an abstract or poster.

  4. Informed consent: Not applicable.

  5. Ethical approval: The local Institutional Review Board (Walter Reed National Military Medical Center) deemed the study exempt from review.

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Supplementary Material

The online version of this article offers supplementary material (https://doi.org/10.1515/jpem-2021-0541).

Received: 2021-08-17
Accepted: 2021-09-20
Published Online: 2021-09-30
Published in Print: 2022-02-23

© 2021 Walter de Gruyter GmbH, Berlin/Boston

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https://doi.org/10.1515/jpem-2021-0541
Keywords for this article
adrenal crisis; adrenal insufficiency; CAH; discharge planning; patient education; pictogram

Articles in the same Issue

  1. Frontmatter
  2. Editorial
  3. Obesity after the Covid-19 pandemic and beyond
  4. Review Article
  5. Clinical profile and management challenges of disorders of sex development in Africa: a systematic review
  6. Original Articles
  7. Development and validation of a mobile application for point of care evaluation of growth failure
  8. Children-Dietary Inflammatory Index (C-DII), cardiometabolic risk, and inflammation in adolescents: a cross-sectional study
  9. Accelerated pubertal onset in short children with delayed bone age
  10. Screening for hypophosphatasia: does biochemistry lead the way?
  11. Subcutaneous regular insulin use for the management of diabetic ketoacidosis in resource limited setting
  12. NPR2 gene variants in familial short stature: a single-center study
  13. The effect of the COVID-19 pandemic on metabolic control in children with type 1 diabetes: a single-center experience
  14. Evaluating a standardized protocol for the management of diabetes insipidus in pediatric neurosurgical patients
  15. Development and assessment of a low-health-literacy, pictographic adrenal insufficiency action plan
  16. Effect of insulin resistance on lung function in asthmatic children
  17. A major health problem facing immigrant children: nutritional rickets
  18. Clinical profile, etiology, and diagnostic challenges of primary adrenal insufficiency in Sudanese children: 14-years’ experience from a resource limited setting
  19. Non-inferiority of liquid thyroxine in comparison to tablets formulation in the treatment of children with congenital hypothyroidism
  20. Short Communication
  21. Increased frequency of idiopathic central precocious puberty in girls during the COVID-19 pandemic: preliminary results of a tertiary center study
  22. Case Reports
  23. Gordon syndrome caused by a CUL3 mutation in a patient with short stature in Korea: a case report
  24. Nitisinone treatment during two pregnancies and breastfeeding in a woman with tyrosinemia type 1 – a case report
  25. Myxedema crisis and ovarian hyperstimulation in a child with Down syndrome
  26. First successful concomitant therapy of immune tolerance induction therapy and desensitization in a CRIM-negative infantile Pompe patient
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