New management approaches urged for children with medically unexplained symptoms
VANCOUVER, British Columbia — Many children referred to a pediatric infectious disease clinic for evaluation for Lyme disease actually have medically unexplained symptoms, according to results of study presented here.
Evaluating and managing children with medically unexplained symptoms (MUS) — defined as persistent fatigue, arthralgia, pain and/or other nonspecific symptoms without objective signs or an organic cause — is a common problem in general and subspecialty pediatric practice, according to Infectious Diseases in Children Editorial Board member Eugene Shapiro, MD.
“Children who are referred to a pediatric infectious disease clinic for Lyme disease, but who actually have MUS, is increasingly common in both areas endemic for and areas not endemic for Lyme disease,” said Shapiro, professor of pediatrics and of epidemiology at Yale University School of Public Health.
According to Shapiro, pediatric infectious disease specialists usually have little training in how to manage patients with MUS, which often leaves the providers and families frustrated with the encounter.
“Little is known about what happens to these patients after the visit,” he said.
Therefore, Shapiro, along with Julie Dunbar, MD, and Carlos Oliveira, MD, also from the Yale University School of Medicine, conducted a study to assess characteristics and subsequent courses of patients referred for Lyme disease to Yale’s pediatric infectious disease clinic but who actually have MUS.
“Some of these patients may have had a true past infection with Lyme disease, but many of them did not,” Dunbar told Infectious Diseases in Children.
The investigators identified through clinic logs all patients referred to Yale’s clinic for Lyme disease from July 2008 to June 2013. The investigators identified 208 patients (median age at visit, 11 years) who were seen by 11 pediatric infectious disease attending physicians.
Attempts were made to contact 102 families. A total of 28 families were reached and 26 participated in a structured phone interview, all of whom have agreed to participate. Median time from the visit to the interview was 25 months.
Of the patients, 83% were diagnosed with MUS (unrelated to Lyme disease) and only 11% had evidence of past Lyme infection, Dunbar told Infectious Diseases in Children.
After the clinic visit, 61% of patients reportedly saw another provider (other than their primary provider) for the symptoms, 39% received additional treatment for Lyme disease and 43% were dissatisfied with the visit.
Parents of most children had conducted Internet searches for Lyme disease information and 50% of those parents who reported being satisfied with the visit said they were still uncertain if Lyme disease would recur.
“Informing parents and primary care providers that Lyme disease is not the cause of symptoms rarely is helpful for these patients with MUS,” Dunbar said. “There is certainly a need for these patients with unexplained, nonspecific symptoms to have follow-up. But physicians should not feed into the idea that vague, nonspecific symptoms are representative of Lyme disease. These patients need more supportive care and more frequent follow-up.”
Oliveira said although these patients are found not to have Lyme disease does not mean that the patients do not need medical care of some kind. As part of this study, the investigators are attempting to create collaborations with other physicians at Yale in hopes to develop a multidisciplinary clinic that provides supportive care for patients who present with these types of symptoms.
Data collection for this study is ongoing. – by Cassandra A. Richards
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Disclosure: Dunbar reports no relevant financial disclosures.