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Digital photography in the evaluation and management of congenital adrenal hyperplasia patients: a standardized protocol for quality improvement
Julie W. Cheng, MD, MAE, Mark P. Cain, MD, Lauren N. Nicassio, BS, Christina Fisher, RN, BSN, MSc, CPN, Elizabeth McCauley, PhD, Anne-Marie Amies Oelschlager, MD, Patricia Y. Fechner, MD, Margarett Shnorhavorian, MD, MPH.
Seattle Children's Hospital, Seattle, WA, USA.

BACKGROUND: Digital photography can be securely stored in the medical record and used to document physical exam findings and monitor surgical wound healing. Use of a standardized protocol for digital photography in the evaluation and management of congenital adrenal hyperplasia (CAH) patients has been recommended but evaluation of this approach has not been reported in the literature. We hypothesize that standardized digital imaging for patients with CAH will facilitate improved quality of care through objective assessments of the anatomy, patient education, and long-term clinical management while reducing the number of genital exams. The purpose of this study was to evaluate the feasibility, acceptability, and applications of digital photography in the care of CAH patients.
METHODS: A protocol for standardized digital imaging including consent, assent, data capture, and storage in the electronic medical record (EMR) was implemented from October 2020 through May 2021. Patients undergoing physical examination during multidisciplinary CAH clinic visits, preoperative evaluation, and postoperative follow-up were included in the study. Male CAH patients, patients with clitoromegaly or urogenital sinus not from CAH, and patients seen through telehealth visits were excluded. Consent was obtained from caregivers and assent was obtained from patients 7 years of age and older. Caregivers and nursing staff were chaperones and a certified Child Life specialist was available during physical examination. Images of the genitourinary exam were taken during clinic visits or at the time of surgery with a ruler in the field as a reference point. No faces or identifying features were included. Images were directly uploaded into the patientís chart in the HIPAA-protected EMR in a media section separate from other clinical documentation. Images were directly uploaded into the media section and not stored on personal devices or cameras.
RESULTS: There were 17 CAH patients seen with a median of 3 (range 0-21) photos per patient during the study period with cooperation from both the patient and their caregiver. Amongst the patients seen, 6 patients underwent vaginoplasty for congenital urogenital sinus with a median of 10 (range 6-21) photos per patient. Images were available and used for preoperative planning and counseling of patients and families. Patients with previous images did not require repeat examinations and were subjected to fewer genital examination during preoperative visits. Images taken during the postoperative period were used to monitor wound healing and surgical outcomes.
CONCLUSIONS: Implementation of standardized digital photography was feasible in the clinic and operating room and acceptable to patients and their caregivers. Digital images reduced the need for repeat physical examination and provided a visual means of monitoring postoperative wound healing. These images may also provide a record for the patient to review at an older age. Future work can assess the application of digital photography as a means of standardizing long-term follow-up and improving patient care.


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