A few months ago, HCMBeat featured this post about HCM Care, a new educational website and downloadable app for HCM patients and their families, featuring essential information for patients trying to understand their HCM diagnosis, explained in written and video formats. HCM Care also provides useful information about genetic testing and family screening for their family members.
Dr. Andrew Wang of Duke University’s HCM Clinic in Durham, N.C., developed HCM Care along with 8 other HCM specialists from 6 hospitals, including Mayo Clinic, Cleveland Clinic and Tufts Medical Center. Funding and support for the project were provided by MyoKardia, a San Francisco biotech company engaged in the development of a precision medicine approach to the treatment of genetic cardiomyopathies. Their HCM medication, MYK-461, is currently in clinical trials in the U.S.
Cynthia Burstein Waldman of HCM Beat had the opportunity via email to talk with Dr. Wang about his HCM practice and his involvement with the development of HCM Care. What follows is their written correspondence, edited for clarity:
HCMBeat: What got you interested in HCM? Did you first develop an interest during your training at Johns Hopkins, or did it begin later once you arrived at Duke?
Dr. Wang: During my internal medicine residency, HCM became fascinating to me because of the interesting physical exam findings in patients with outflow tract obstruction and the complexity of the condition causing diverse symptoms and manifestations. In my early faculty years at Duke (soon after alcohol septal ablation was introduced for the treatment of obstructive HCM), I realized the importance of having a dedicated care approach and experience in treating HCM patients to optimize and individualize treatment, so I started our HCM Clinic at Duke in 2003. I’ve continued to direct this clinic since then.
HCMBeat: How many HCM patients do you see in the HCM Clinic at Duke?
Dr. Wang: We have a dedicated, full day clinic for HCM on 3 Mondays each month. I see approximately 6 new patient referrals for HCM and 10 returning HCM patients each clinic day. We treat over 500 HCM patients a year at Duke.
HCMBeat: Does Duke perform septal myectomy and/or septal alcohol ablation for obstructed HCM? How many of each type of procedure does Duke perform per year?
Dr. Wang: Our center performs about 30 surgical myectomies which are performed by 2 dedicated cardiac surgeons and 5 alcohol septal ablations each year.
HCMBeat: Do you have a cardiac genetics counselor at Duke? What about a pediatric HCM specialist? How many of your diagnosed patients are genetically tested?
Dr. Wang: Yes, we have a full-time cardiovascular genetics counselor and a pediatric HCM specialist as well. We perform genetic testing in about 40 HCM patients a year.
HCMBeat: How did you come up with the idea of the HCM Care website and app?
Dr. Wang: The idea for the HCM Care website and app originated over 2 years ago and developed from my experiences with treating HCM patients. We used to send paper copies or hand-outs of helpful educational materials to our HCM patients before or after their clinic visits. But I realized that these materials were only general overviews, and that patients often had more specific questions about HCM and the answers were either difficult to find or not discussed at all in the handouts. I thought that a question-based approach would allow a patient or family member to find their specific answer, and perhaps see other questions and answers relevant to their situation. We’ve been very fortunate to work with an outstanding team of physicians, patients, software and animation designers, and videographers to develop this resource.
HCMBeat: Are the topics addressed on the website and app the most frequent questions that you encounter from patients?
Dr. Wang: The questions were written or selected based on several factors: 1) actual questions HCM patients have asked; 2) important topics that most HCM patients should know about the condition; and 3) information that is covered in professional guidelines for treating HCM patients but that is not written for the patient audience.
HCMBeat: Who are some of the other HCM expert physicians who are featured, and how did you choose them? Do you plan to include other physicians in future editions?
Dr. Wang: We invited several HCM experts from many different institutions to participate in our videos and to discuss different HCM topics. (We thought that some patients may prefer to listen or view the information in these videos, rather than read the question and answers as text.) We selected these physicians based on their expertise in treating HCM and knowledge of recent advancements in the field. We hope to add more expert interviews, topics and HCM physicians as the app’s content is updated.
HCMBeat: Currently, the website and app are informational. Are there plans to make them more interactive? How might it be used to assist patients with decision making?
Dr. Wang: We are very interested in having HCM patients discuss their thoughts about specific HCM topics in future video interviews. This patient perspective is absent in the current content, and I think patients would value hearing other HCM patients talk about their treatment and what factored into their decisions. Although the app is not intended to provide medical advice to the individual patient, we welcome ideas for new questions or content to be added in future updates.
HCMBeat: What has been the feedback on HCM Care from your patients?
Dr. Wang: Many patients have said that they previously “Googled” for information about HCM, but found it challenging to find answers to their questions. Some have come away from their searches even more uncertain or frightened.
My patients have generally been very excited to have this educational resource. Several have found the animation of the HCM heart very helpful by allowing them visualize obstruction. Hopefully after having seen the app or website, they have a better, more reassured understanding of this treatable condition. Since the launch of HCM Care in March of this year, over 1,000 users have benefited from the information provided.
HCMBeat: On behalf of HCMBeat and the HCM Community, I would like to thank you for your efforts to help patients understand what is often an overwhelming and confusing diagnosis. I would also like to thank you for taking the time to answer these questions.
HCM Care is downloadable as an app for Android and Apple mobile devices. The version in the Apple App store can be found here: https://itunes.apple.com/us/app/hcm-care/id1202279004?mt=8
There is also a web-based version found here: www.hcmcare.com
Email the HCM Care team with any suggestions for new questions or with any comments at: HCMCareapp@gmail.com.