Patient-Centered Research Priorities: A Mixed-Methods Approach from the Colorado Children's Outcomes Network (COCONet).

BACKGROUND: Practice-based research networks (PBRNs) perform clinically relevant research designed for immediate translation to patient care. Research questions developed with patients and parents are more likely to be relevant to stakeholders. This case study developed priority areas for patient-centered outcomes research in pediatric health within the context of the Colorado Children's Outcomes Network, a statewide pediatric PBRN, and in collaboration with stakeholders. METHODS: We undertook a mixed-methods, community-engaged process to understand and develop a research agenda for our pediatric PBRN. With a stakeholder-engaged research team, we conducted 52 stakeholder interviews and 1 focus group (n = 9) addressing topics including child health issues, personal health care experiences, community health, and the health care system. Transcripts were coded and analyzed by researchers and parent advisors. We conducted a Web-based survey of PBRN stakeholders (n = 75) to rate priority issues identified in qualitative findings. Finally, we facilitated a community-engaged mixed-methods interpretation and issue selection process with our Network Advisory Board to identify issues of highest importance for Colorado Children's Outcomes Network. RESULTS: Six topic areas of importance to pediatric health stakeholders emerged from qualitative work. Participating stakeholders used rating surveys to rank these 6 topics. Pediatric mental health coordination and communication/integration with primary care was ranked as the most important and highest research priority. The Network Advisory Board additionally identified immunization uptake and transition from pediatric to adult health care as research priority areas. CONCLUSIONS: This pediatric PBRN identified numerous research priorities in pediatric health and selected 3 for immediate research action. PBRNs can use community-engaged, mixed-methods research approaches to set research priorities and develop patient-centered pediatric research agendas.

Pheochromocytoma causing cardiomyopathy, ischemic stroke and acute arterial thrombosis: a case report and review of the literature.

Pheochromocytoma is a rare catecholamine secreting neuroendocrine tumor with an estimated annual incidence of one to four per million and prevalence among hypertensive patients of 0.1 to 0.6%. The symptoms and signs of pheochromocytoma include the classic triad of episodic headache, increased sweating, and palpitations. These are as a result of an uncontrolled release of catecholamines. There exist only a small number of reports of pheochromocytoma simulating hypertrophic obstructive cardiomyopathy, few reports of pheochromocytoma-induced ischemic stroke and only two reported cases with pheochromocytoma-induced arterial thrombosis. We present a case of multiple, rare clinical complications of pheochromocytoma occurring in the same patient and the review of literature of these complications.