We are only a week into the HH Comorbidity Survey and the participation has been amazing! We hope to have at least 200 participants by the end of July and it looks like we can certainly make that number and perhaps more! A huge thank you to all who have already participated!
Today I want to talk a bit about why YOU should complete the short 25 minute survey – if you have not already!
The goal of this survey is to provide medical professionals and researchers information about HH that they may not already know! We want to uncover the undiagnosed or under-diagnosed issues individuals with HH and their families are struggling with every day. This includes things that impact their quality of life. We also want to share the information WITHIN our international HH Community to help everyone understand that they are NOT ALONE on this journey.
Some of the feedback we have received has been “Our outcome has not been good, so I don’t want to upset anyone” or “I think we are the only ones having to deal with these issues and I don’t think it will be relevant”. These statements couldn’t be further from the truth! Those individuals that have had the greatest outcomes – while we celebrate their successes – are not the ultimate focus of this survey. Pre and post treatment symptoms are the focus. Our ultimate goal is to better define HH as a complex syndrome. This is NOT a surgical outcomes study. We have several HH epilepsy centers currently gathering that data.
We will share the results of the survey with the HH Community as well as with the distinguished group of HH clinicians, researchers and Young Investigators attending the 4th International HH Symposium in Washington DC this September. This is where we hope to have the greatest impact. Patient and family experiences, as well as Patient Reported Outcomes (PRO) are playing a greater role in the Healthcare industry. They inform and fill in the gaps in the scientific data. While it may not mean treatments will change today, wouldn’t it be nice to have the science focused on what is important to patients and not just what is interesting to the scientists??
Outcomes we hope to encourage:
- Expanded definition of HH as a complex syndrome
- Standardized comprehensive treatment protocols over the lifetime of patients
- Access to all necessary therapies post-treatment, as needed
- Ability to influence ICD codes insurance companies use to approve/decline services
- Education/awareness for early providers such as Primary Care Providers/Pediatricians/ Family Practice professionals
This is an opportunity to have our voices heard, on HH specific issues, with the individuals that have the ability to influence change.
If you have any problems completing the survey (https://www.surveymonkey.com/r/HopePatientSurvey), are unsure about a specific question, or just require a little extra support – feel free to contact Erica.
Want to learn about Comorbidities? Check out some of our recent blogs:
- What is a Comorbidity?
- Endocrine Comorbidities
- Psychiatric and Behavior Symptoms
- Neurological Comorbidities
Thank you again to those that have already completed the survey. This is how science and medicine move forward – through the efforts of individuals and families with a passion for making things better for all.
