| Description |
Differences of Sex Development (DSD) are congenital conditions that affect an individual's sex characteristics due to genetic (i.e., sex chromosomes) or phenotypic differences (i.e., gonadal or genital development). DSD are rare, occurring in approximately 1 in 4,500 to 5,000 live births. Additionally, there are limited data available on patient and parent/caregiver (hereafter referred to as "caregiver") knowledge of the condition. Understanding patient and caregiver knowledge regarding the condition is critical as it allows them to understand why the difference occurred and supports their engagement in medical decision making. Through this study, I hoped to understand rates of knowledge of both patients and caregivers presenting to pediatric DSD clinics across the United States. Both patients (>10 years old) and caregivers completed a Knowledge of Condition (KoC) form at least 6 months following their initial appointment in clinic. The KoC examines the name of the condition and their understanding of what caused the condition. Caregivers also completed the Psychosocial Assessment Tool (PAT), which includes information about social determinants of health (e.g., race, ethnicity, caregiver's highest level of education). Medical chart review was also completed for each patient to confirm DSD diagnosis. Data from 328 caregivers and 170 patients were collected. Participants included 170 patients, ranging from 9 to 39 years old, who had been diagnosed with a DSD and 328 caregivers (age range = 16-69 years old). Results showed that roughly 75% of patients and caregivers that provided a name for the diagnosis were accurate when compared to the diagnosis in the medical chart. However, from these responses, 16% (n = 79) of participants were not able to accurately recall the name of their condition. Related to social determinants of health, fathers' highest level of education was positively correlated with whether patients could name their diagnosis-patients that had fathers with higher education levels were more likely to report knowing a diagnosis. Similarly, fathers' education was also correlated with caregivers' ability to provide a cause for the diagnosis. In conclusion, understanding patient and caregiver condition-specific knowledge is essential and will allow healthcare providers to better understand the educational needs of patients. With a better understanding that different social determinants of health were associated with knowledge, specifically caregiver education, it will help ensure healthcare providers are targeting those who may require additional educational supports and offers healthcare providers the opportunity to provide higher quality care for their patients via addressing knowledge gaps. Improving patient and caregiver education will allow them to participate with a greater understanding of their plan of care and allows for more confidence in their treatment. |
