Every year, approximately 50 families from all over the country come through our doors at the Johns Hopkins Hospital to start the ketogenic diet (KD). Each comes with a personal story, a story the Pediatric Epilepsy team wanted to know more about. The Internet is filled with stories about how the diet is seen as a last resort and families are not encouraged to start it. Our experience would say that this does happen, but this is becoming more the exception than the rule... So how do parents find out about the diet? Was the road to our center a difficult one or was the decision to start the diet simply the next logical step?
To answer these questions we distributed an anonymous 12-question survey to parents initiating the classic KD at Johns Hopkins Hospital from March 2009 to February 2012. We started by asking 104 families how their journey began and what the road was like: When did the seizures start? How many drugs were tried and failed? And how long did it take until the decision was made to try the KD?
Our results showed that on average, the KD wasn’t started until 3 years after seizure onset. Over the course of those three years, an average of 5 anticonvulsant drugs were tried unsuccessfully, which is in contrast to the 2009 International KD Consensus Statement which recommends that the KD should be considered after 2-3 anticonvulsants have failed. So why the wait? Is there a problem?
It’s Not Just About the Seizures
Our data suggests that for some parents, it’s not just about eliminating seizures. When asked to identify their primary goal for starting the KD, not surprisingly 69% of parents chose “fewer seizures”. What’s intriguing is that for 31% of families, other outcomes such as “improved cognition” (19%), “less intense seizures” (9%), and “fewer medications” (7%) were even more important. When we examined the responses of those families more closely, an interesting correlation emerged. Each family in our study was asked to rate the supportiveness of their referring neurologist. About half of families reported that their neurologist was fully supportive of their decision to begin the diet, with most referring neurologists (86%) having a reportedly favorable impression of the KD. However, for those families for whom seizure reduction was not the top priority, the supportiveness rating of their neurologist tended to be much lower. Obviously the ultimate goal of any neurologist is seizure freedom but recognizing that for some families other outcomes may be just as or more important could expedite the initiation of the KD for children who could truly benefit from it.
Knowledge is Power
Parents were also asked in the survey how they obtained information about the KD. Most families (72%) reported that they learned about the KD from their physician, including even those who gave their referring child neurologist a low supportiveness rating. This suggests that even though some neurologists were less than enthusiastic about the KD, the information was presented to the families and the referral made. The second most common source of information about the diet was the Internet (56%), including websites (such as www.epilepsy.com) and web support groups. Other major sources of information included books on the KD (46%), Charlie Foundation or Matthew’s Friends (25%), other parents (23%), an Epilepsy Foundation support group (21%), and a dietician (8%).
To our knowledge this study is the first to examine parental perceptions of physician support prior to initiating the ketogenic diet. Our results demonstrate that a supportive neurologist is critical when it comes to both educating parents about the diet and helping to facilitate its initiation when appropriate. The findings also emphasize the importance of effective communication of goals and expectations between child neurologists and families, with a disconnect between physician and family being a potential barrier to timely referral. Most families obtained at least some information from the Internet, which when taken from credible sites can be a fantastic way to find out more about the diet, particularly for families whose access to ketogenic diet centers may be limited. Overall, we were pleased to find that child neurologist support for the KD is very high and that motivated families did not generally encounter too much resistance on their road to Johns Hopkins at least. For those families who made the trip, we’re happy have them!
Kossoff EH, Doerrer SS, Turner Z. How do parents find out about the ketogenic diet? Epilepsy Behav, online 2012 June 5.