Doctors who treat children with rare conditions sometimes seek guidance from online chat groups where families relate their experiences with the disorders.
While gleaning medical information from the Internet is often considered unreliable, doctors may find themselves in a quandary: Scientifically validated recommendations on many uncommon conditions are sparse, and published results are sometimes out of date or based on a tiny number of cases. Instead, real-world experiences posted by families of patients on social media may offer a broader perspective on potential outcomes.
Deciding a course of treatment when it involves children with rare conditions can be particularly challenging. Doctors aim to save or improve lives while trying to minimize suffering. Concerns about health-care resources and ethical practices also often enter the picture.
Doctors typically make decisions on how to treat patients based in part on recommendations from medical groups, which usually stem from research or professional discussions. Health-care institutions may develop their own approaches based on cases their doctors have treated. When there is a gray area, parents’ views are also an important factor.
Sometimes there isn’t enough information. John Lantos, a pediatrician and director of the Children’s Mercy Bioethics Center in Kansas City, last year saw a baby, Chloe Gerling, with mosaic trisomy 22, a rare genetic condition that can cause developmental delays, heart problems, and other issues. At age 8 weeks Chloe had a choking episode, which led to complications. Doctors weighed whether to create an opening in her trachea to insert a breathing tube. Some on the medical team worried Chloe might not survive to leave the hospital, or that the procedure might prevent her from getting other surgeries she might need.
Chloe’s parents, Jodie and Alan Gerling of Manhattan, Kan., wanted to go ahead with the procedure.
Dr. Lantos says when he looked up data on mosaic trisomy 22 in medical literature, he found only a small number of reported cases, many involving patients that had fared poorly. The Gerlings directed him to a Facebook group comprised of 107 families where people discussed their children’s experiences and how they fared. The Facebook group had far more families than “what was in the entire peer-reviewed medical literature and the children had a much wider range of outcomes,” Dr. Lantos says.