Declan Donoghue was an outgoing talkative toddler but he also displayed puzzling symptoms that included fevers, eye scarring, arthritis of the knees and other illnesses that multiple specialists could not explain. After he died of sepsis, at age 2, he was diagnosed with the rare genetic condition, X-linked Chronic Granulomatous Disease.
In the Pediatrics article, "An Innovative Collaborative Model of Care for Undiagnosed Complex Medical Conditions," to be published in May 2017 (online April 24) the authors at Wake Forest Baptist Health describe how his case led to a partnership between the hospital and the child's family to address gaps in making diagnoses for children.
The result was an innovative, collaborative model of care for pediatric patients who are being treated by multiple specialists for complex medical conditions that have defied diagnosis, the article states. The authors reviewed the program instituted by the Wake Forest Baptist Medical Center in North Carolina in 2011 called the Declan Donoghue Collaborative Care Program (DDCCP). The program enrolls children who are receiving care at the health system who have an undiagnosed clinical condition and need or have received care from three or more specialists. A coordinator organizes all medical information from Wake Forest Baptist and all outside clinicians from whom the child received care; obtains a detailed history from parents; and invites all clinicians and non-physician clinicians to join conferences to discuss the patient's care and possible diagnoses.
Between April 2011 and June 2016, conferences were held for 40 children between ages 1 month and 17 years. The conferences resulted a diagnosis for 21 out of 29 children who were referred to the program for that purpose. Plans of care were developed for the remaining children with unresolved clinical problems. All children without diagnoses remained in the program.
The authors conclude that such collaborative models of care can help prevent erroneous diagnoses and treatments; help avoid unnecessary tests, procedures and hospitalizations; and lead to improved health outcomes for children. They are conducting an analysis of the costs involved.