HH Comorbidity Survey – Initial Results
In today’s blog on the initial HH Comorbidity Survey results, we are going to share the surgical treatment spectrum as reported by survey participants. This information was shared by individuals with HH or caregivers of individuals with HH. It is important to note that individuals may have had more than one procedure at the time the survey was completed and we counted all procedures to date. If some of these procedures are new to you or the terms seem unfamiliar, you can read more about them here. While most of the information presented is probably not surprising, what is missing is the efficacy or the data on which treatments are most effective. That cannot be determined from these numbers. Hope for HH is supporting an initiative, currently in the early stages, to gather that data directly from doctors and surgical centers. The goal is to get a better understanding of which procedures are more effective under what conditions. We hope to share more on that in future blogs.
It is interesting to note that the adult curve does reflect the fact that many adults may have had to undergo more than one procedure in their lifetime. Therefore, the numbers for the earlier treatment options such as Gamma Knife, Transcallosal resection, and Orbitozygomatic resection would be higher for the current adult population. The significant increase in overall numbers having the MRI-Guided Stereotactic Laser ablation is most likely due to the fact that the laser was initially introduced in 2011 and used exclusively at Texas Children’s Hospital. It is also arguably the most often used procedure at the current time.
Hope for HH has been working tirelessly to get our patient-centered survey translated into several languages to encourage international participation and to gather more comprehensive data. We may find that as more individuals and caregivers from Europe and other countries participate, there may be an increase in the overall numbers for some of the other treatment options. If you have not participated because of language issues, you can access the survey in multiple languages here [English] [Russian] [German] [French]
We value your input and want to be able to adequately represent the full range of personal experiences worldwide! Stay tuned for our next blog on cognitive issues reported most by caregivers and individuals with HH.