Patient and Caregiver Perspectives on the Diagnosis and Management of Pediatric Renovascular Hypertension

Background Pediatric renovascular hypertension (pRVH) may lead to significant morbidity and mortality. Rare disease prevalence limits existing data and optimal management remains ill-defined. This study seeks to capture patient and family perceptions around the diagnosis and management of pRVH. Methods The pRVH Patient Centered Outcomes Research Collaborative assembled a global virtual research network of multidisciplinary stakeholders, inclusive of patients and families. We examined self or proxy-reported emotional support, informational support, emotional impact, and number of surgeries/procedures, as well as self-reported pain, global health, fatigue, and social functioning. Descriptive statistics were performed. Results 28 stakeholders (93% parent/guardian; 7% patient self-report) completed the survey. Patients with a surgical or procedural history reported significantly fewer nighttime awakenings due to pain (mean 44 v. 51.5) and less fatigue (48.2 v. 58) than those without. Patients diagnosed before 2 years of age reported better informational (60.9 v. 53.0) and emotional support (57.6 v. 51.5), and better social functioning (64.8 v. 53.0). Respondents unsatisfied with the time to receive a diagnosis indicated more pain (53.3 v. 45.1), fatigue (58.5 v. 50.5), worse global health (37.1 v. 46.6), and worse social functioning (50.8 v. 62.6) than satisfied patients. PCP-diagnosis was associated with worse emotional support (43.2 v. 56.4), informational support (46.9 v. 58.4), and emotional impact (46.6 v. 56.6) than those diagnosed by a specialist. Conclusion These results suggest that early diagnosis, access to centers of excellence, and treatment by multidisciplinary and specialty care teams can optimize pRVH treatment.