Digital photography in the evaluation and management of female patients with congenital adrenal hyperplasia: A standardized protocol for quality improvement



      Digital photography can be securely stored in the medical record and enhance documentation of physical exam findings and monitor wound healing. A standardized protocol that respects the dignity of the patient and maintains the fidelity of objective documentation is needed for patients with differences in sexual development (DSD) and congenital adrenal hyperplasia (CAH).


      The purpose of this study was to evaluate the feasibility, acceptability, and applications of a HIPAA-compliant digital photography protocol in the care of female patients with CAH.

      Study design

      A protocol for standardized digital imaging including consent, permission, data capture, and storage in the electronic medical record (EMR) was implemented. Patients undergoing physical examination during multidisciplinary CAH clinic visits, preoperative evaluation, and postoperative follow-up from October 2020 through May 2021 were included. Male patients with CAH, patients with clitoromegaly or urogenital sinus not from CAH, and patients seen through telehealth were excluded. Consent was obtained from caregivers and permission from patients. Images of the exam were taken during clinic visits or at the time of surgery with no identifying features included. Images were directly uploaded into the patient's chart in the HIPAA-protected EMR separate from other clinical documentation and not stored on personal devices.


      There were 17 patients with CAH seen with median age 6 years (range 2 weeks–18 years). There was a median of 3 photos per patient during the study period with cooperation from both the patient and their caregiver. Amongst the patients seen, 6 patients underwent reconstruction with a median of 10 photos per patient. Images were available and used for preoperative planning and counseling. Patients with previous images did not require repeat examinations and were subjected to fewer genital examinations. Fewer providers were present during exams. Images taken by providers and caregivers during the postoperative period were used to monitor wound healing and surgical outcomes.


      Protocol implementation improved patient care by reducing the number of exams and number of providers present, enhancing clinical documentation, and providing a means of tracking the physical exam over time. This was in concordance with guidelines for limiting exams for patients with DSD and CAH. Implementation of best practices for medical photography was important in respecting patient dignity and confidentiality.


      Summary TableBest practices before, during, and after capturing medical photography for evaluation and documentation.
      Best practices for medical photography
      Before medical photography
      • Informed consent with clear explanation for use of photographs before taking any photographs
      During medical photography
      • Follow a comprehensive and standardized photography protocol to optimize photography
      • Photograph taken in a suitable private and comfortable environment
      • Photographer must respect the rights and dignity of the patient
      • Take all measures to de-identify patients
      • Place a ruler in the image field to provide reference point
      • Have a chaperone present
      • Photograph only clinically relevant anatomy
      • Efficiently capture photograph to reduce time of photography
      After medical photography
      • Images should be stored in a secure and standardized system and not on personal devices
      • Informed consent for use of images outside of the medical record



      CAH (Congenital Adrenal Hyperplasia), DSD (Differences of Sexual Development), ED (Emergency department), EMR (Electronic medical record), HIPAA (Health Insurance Portability and Accountability Act), IQR (Interquartile range)
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