11 - Early Diagnosis, Treatment, and Multidisciplinary Care May Optimize the Experience of Children with Renovascular Hypertension

Poster Number: 11
Publication Number: 11.321

Jessie M.. Dalman, University of Michigan Medical School, Ann Arbor, MI, United States; Zubin J. Modi, University of Michigan Medical School, Ann Arbor, MI, United States; Noelle E. Carlozzi, University of Michigan Medical School, Ann Arbor, MI, United States; Jennifer A. Miner, University of Michigan Medical School, Ann Arbor, MI, United States; Anne Marie Cahill, Siemens Healthineers, Philadelphia, PA, United States; Joseph Flynn, Seattle Children's, Seattle, WA, United States; Rajesh Krishnamurthy, Nationwide Children's Hospital, the Ohio state university, Columbus, OH, United States; Kevin E. Meyers, The Children's Hospital of Philadelphia and University of Pennsylvania, Philadelphia, PA, United States; Joshua A. Samuels, McGovern Medical School at UTHealth, Houston, TX, United States; Jonathan Troost, University of Michigan Medical School, Ann Arbor, MI, United States; Lisa Van Natta, University of Michigan Medical School, Beaverton, OR, United States; Jake A. Zangara, none, Basking Ridge, NJ, United States; Kori Jones, Michigan Medicine, Ann Arbor, MI, United States; Santhi K.. Ganesh, University of Michigan, Ann Arbor, MI, United States; Rulan S. Parekh, University of Toronto Temerty Faculty of Medicine, Toronto, ON, Canada; Dawn M.. Coleman, Duke University Medical Center, Durham, NC, United States

Background: Pediatric renovascular hypertension (pRVH) may lead to significant morbidity and mortality.  Rare disease prevalence limits existing data; optimal management remains ill-defined.  Patients/families are challenged by access to specialty care.

Objective: This study seeks to capture patient/family perceptions around the diagnosis and management of pRVH.

Design/Methods: The pRVH Patient-Centered Outcomes Research Collaborative assembled a global virtual research network of multidisciplinary stakeholders, inclusive of patients/families. We examined self or proxy-reported emotional support, informational support, emotional impact, and number of surgeries/procedures; as well as self-reported (adult patients only) pain, global health, fatigue, and social functioning. T-tests were used to identify group differences.

Results: 28 stakeholders complete the survey (79% mother/female guardian, 14% father/male guardian, 7% patient self-report). Adult patients, or parent proxy reporters, with a surgical/procedural history reported significantly less pain (mean 44.0 v. 51.5) and fatigue (48.2 v. 58.0) than those without. Patients diagnosed with disease ≤2 years of age reported better informational (60.9 v. 53.0) and emotional support (57.6 v. 51.5), and better social functioning (48.4 v. 38.9) than those diagnosed at older age. Adult patients unsatisfied with the time it took to receive a diagnosis indicated more pain (53.3 v. 45.1) and 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 while parent/proxy reporters that perceived a delay in diagnosis reported worse emotional impact (49.8 v. 56.5). 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 (ie: pediatric cardiologist or nephrologist).

Conclusion(s): These results suggest that early diagnosis and treatment by multidisciplinary/specialty care teams optimize the care of pediatric pRVH experienced by patients/families. These data will guide further work to prioritize future large-scale research to optimize the care of pRVH.