Healthcare is in a state of flux. As extraordinary measures are taken to stem the spread of the coronavirus, regular medical care—from routine checkups and screenings to in-office treatments and procedures—has been subject to significant disruptions and challenges. Social distancing requirements of the 

 pandemic have created new limitations on in-person physician visits. 

Office closures and safety concerns have resulted in the delay or cancelation of medical appointments for some patients. Compounding matters is the dynamic and uncertain nature of the pandemic. The issues that patients and physicians are confronting today have evolved since the COVID-19 shutdowns began in March—and further change is undoubtedly on the horizon.

 patients and their eye care professionals, the pandemic has led to an array of stressors, given the progressive but indolent nature of a disease that can lead to blindness and requires close ongoing monitoring and treatment. The current health environment is particularly worrisome for elderly patients because they are most at risk for vision loss from glaucoma and are also among the highest risk groups for COVID-19 mortality.

To better understand the concerns and experiences of glaucoma patients during the pandemic, the Glaucoma Research Foundation (GRF) commissioned an online survey in May 2020. The aim was to gain valuable, real-time patient input that can help eye care professionals better address patients’ emotional needs as they adapt to the new, and continually changing, care requirements of COVID-19. 

The GRF survey, which was supported by Aerie Pharmaceuticals, assessed patients’ confidence in their disease management during the pandemic; specific disease management concerns; patients’ experience with telemedicine; and patients’ comfort in returning to eye professionals’ offices. The survey drew a national response, with 1051 adult glaucoma patients from 49 states participating in the questionnaire.

The survey findings bring to light several key considerations for ophthalmology practices evolving glaucoma care in the COVID-19 environment.

Notably, the survey found that more than half of respondents (53%) had to delay and/or cancel an eye care appointment during the first months of the pandemic. These disruptions seem to have significantly impacted patients’ confidence in their disease management, with approximately one-third (36%) of glaucoma patients surveyed saying they were not confident that their disease was well-managed. Those who had the lowest confidence levels in their glaucoma management were 30% more likely to have had an eye care appointment delayed or canceled.

This feedback highlights the central role of communication in enhancing glaucoma care and the importance of nurturing the physician-patient relationship during the pandemic. With physician offices open again, personal and direct doctor-patient communication is paramount to helping patients understand their unique level of risk and rebuild confidence in their disease management. 

Without scaring patients, it’s important that they understand the consequences of delaying an office visit and the real risk it may have for further, even permanent, vision loss.

At my practice in San Francisco, we went through every patient record that had an appointment during the early phase of the pandemic and conducted a risk assessment. We then communicated with each patient to make them aware of their particular situation and the risk of not coming in to be evaluated when our office reopened.

The first step was to speak with our staff about our responsibility to be safe, not just in the office, but also outside of work, with specifics about how to minimize risk. I sought their input and we developed together an action plan with new office protocols.

We also invested in an expansion of our office team. With this increased staff, we are able to directly answer more patient calls and engage in longer, in-depth conversations. In addition, we have placed a greeter at our main entrance who screens patients, which includes basic health questions, a temperature check, and a check for an appropriate mask. 

After completing these safety protocols, the greeter asks patients to use hand sanitizer prior to entering the clinic. These new measures have played a valuable role in boosting our patients’ confidence in their disease management during the pandemic.

The “COVID-19 Office” and Telemedicine

The survey also reveals that glaucoma patients place high value on being able to see their physician in person. Six in 10 (63%) respondents said they are comfortable returning to their eye doctors’ offices as long as social distancing measures, such as face masks and less crowded waiting rooms, are implemented. This preference for in-person physician visits, coupled with technology challenges, make patients largely uninterested in telemedicine. A vast majority (87%) of glaucoma patients surveyed said they would rather wait six weeks for an in-person office visit than have a telemedicine visit in two weeks.

While telemedicine has been a valuable tool in other medical specialties during the pandemic, it has significant limitations for standard diagnostic procedures in glaucoma care. Since intraocular pressure (IOP) checks, visual field evaluation, and other tests cannot be easily conducted virtually, practitioners may lose considerable clinical information by trying to manage glaucoma via telemedicine.

During these unprecedented times, the safety and well-being of patients is the principal concern of all eye care professionals. It is also important to consider the needs of your staff as well. At my center, we have modified several standard procedures that not only have enhanced patient safety during COVID-19 but have also made us operate more efficiently and safely as an eye care practice. 

I have found that when members of my office team feel safe at work, their calmness and confidence extend to the patient-provider relationship, helping patients feel more comfortable about the visit. By fostering a caring and professional approach to glaucoma care in the midst of uncertainty, we can all navigate the COVID-19 pandemic while continuing to protect the vision of our patients.

Andrew Iwach, MD, is Executive Director of the Glaucoma Center of San Francisco, Associate Clinical Professor of Ophthalmology at the University of California, San Francisco, and a faculty instructor at the California Pacific Medical Center Department of Ophthalmology. 

The article reflects the views of the author, not necessarily those of the publication.

A new survey assessed patients’ confidence in their disease management during the pandemic, specific disease management concerns, and experiences with telemedicine.

Managing Glaucoma During COVID-19: Patients Point the Way to Improved Care

Andrew Iwach, MD

Some practical tips to share with community physicians. IPF [idiopathic pulmonary fibrosis] can be a difficult diagnosis. Sometimes it’s black and white, clearly IPF or clearly not. But most of the patients fall in that gray zone of uncertainty. What I would say is if you’re uncertain, and this might be self-serving, contact your local ILD [interstitial lung disease] center. Get a second opinion and see what they have to say. I look to my colleagues all the time in our clinic, and I say, what do you think of this CT, or what do you make of this or that?

Talking among ourselves and putting these patients before multidisciplinary discussion, which typically happens at ILD centers, can be very important for validation of the diagnosis. Because probably the most difficult aspect of IPF is to make an accurate diagnosis first. The value of sending folks to ILD centers is that they can be looked at for clinical trials. Many ILD centers, such as ours, are transplant centers as well.

It becomes 1-stop shopping. You can get validation of the diagnosis concurrently. If you don’t want to start the therapy yourselves and leave it to the ILD docs, you can do it. They get looked at for clinical trials, and they get evaluated even in a cursory fashion as a potential lung transplant candidate.

To the community docs out there, don’t feel like you’re flying alone. I think I speak for all the ILD centers out there. We’re only too happy to partner with you in taking care of your patients and making sure they have the best possible outcomes.

I believe strongly that the primary care clinician should be the principal player in guiding patients and their caregivers through any disease process. I’ve had strong bias all along. I trained as a primary care physician years ago. My sense is that the primary care clinician needs to understand these disorders because of their severity and the implication for patient and their family members. That includes having a high index of suspicion of when this disease may be present.
So there have been a series of studies that are lovely and demonstrate that an older person presenting with a chronic cough is a tip-off to the primary care clinician that they should consider these disorders, and IPF in particular, as a potential diagnosis. Because it’s our suspicion that earlier diagnosis, particularly with these effective drugs, is likely going to be better in the long term. It makes sense, and the data would support that. Trying to work with our primary care clinicians to have a higher index of suspicion of when these disorders are present is crucial. The same thing for our radiologists, because we have a sense that early changes on a CT scan can be very instructive with regard to the early diagnostic process. 

That interaction has improved. If you think about how we consider optimizing the patient’s quality of life and survival, the importance of being able to address the potential tolerability issues of the drugs and how to manage them. The comorbid conditions and their interaction. In the middle of all that is a primary care clinician.

When we develop therapeutic plans with our patients and their caregivers, when we have a disease-management plan, it’s immediately transmitted to their primary care clinician, ideally by a phone call or a video chat, so the primary care clinician is fully aware of where we are at each stage and can aid the patient in making decisions at each stage.

The primary care clinician is a crucial player from the early diagnosis to the management at the end stage of disease. They are the quarterback in most of what happens with these patients.

Steven D. Nathan, MD, FCCP, and Fernando J. Martinez, MD, MS, share clinical pearls and advice for the management of IPF.

Clinical Pearls for the Management of IPF

Fernando J. Martinez, MD, MS

But maybe we could finish up this discussion. And Dr Seminerio, you could start us off. Maybe a piece of advice or one take home message from the discussion today and we could go around.

: The take home is that there is a lot that's coming and that it is going to be very, very important for us to have discussions with our patients, come up with a plan together, and just be very cognizant that that plan may need some adjustments. If we put that out there that it's not a failure if we have to make an adjustment or one treatment doesn't work but that we're on top of it as quickly as possible. That is the best thing we can do for our patients is to show that we're never going to give up on them.

I'd say a couple of things, one listen to your patient. Obviously, the shared decision, set the goals with the patient. And then number 2, like we've talked about is if you know that Crohn's disease, 80% of Crohn's disease, from the start will require an advanced therapy. Starting that earlier, Jen said that several times, but also then, even within that group, what are the ones with the highest risk factors? Fistula and deep ulcers, multiple segments involved versus which are the ones that are moderate to severe single segments. I know we have great options for both.

: Not much more to add other than we are not exactly at precision medicine and practice of precision medicine in IBD but we are certainly getting there. And again, identifying- initiate early appropriate therapy and recognize that we could still practice individualized care.

: I would echo everyone's comments here. But the key takeaway I would say is start our patients early. Don't delay their care. We can limit all the complications and poor outcomes if you start that patient early. Then personalize it based on all their risk, their severity, comorbidities. Choose appropriately. And then once you have done that, follow them closely over time. This is not a disease that ends after one year. This is a chronic lifetime disease. You cannot go wrong by starting early, choosing a therapy that you think may be the best for that patient. It may or may not work but if it doesn't then you know that you're following them closely and then follow them throughout their time. And of course, you can adjust how frequently you follow them once you get them into complete remission.

I agree. And just one last thing to add is personalizing the target. We've been hearing about treat to target so much. But the target for each patient is different. And as we started the discussion, it's different for each patient. Starting early and personalizing that target. But I want to thank everyone for this rich and informative discussion and thank you for watching this 

® Peer Exchange. If you enjoy the content, please subscribe to our e-newsletters to receive upcoming Peer Exchanges and other great content right in your inbox.

Experts in gastroenterology share advice for the treatment of patients of Crohn’s disease.

Take-Home Messages for the Management of Crohn’s Disease

Jennifer Seminerio, MD

 In the little time that we have left, I want to go around and get some final thoughts from each one of you. I would like you to address the whole issue of using naloxone. How do you address this with patients? How do you address this with clinicians, and what is your view about going forward? How is this going to change the landscape of opioid use in the United States? Why don’t we start with Jeremy, and we will keep going from there? Take 30 seconds, and we will just keep going.

 I think we have covered a lot of ground today. We know, and have known for a long time, that opioids have certain risks. They pose risks to patients, and they pose risks in the community when they are taken unsupervised or misused. From a safety measure perspective, there are things we can do. We can do a better job identifying the patients at risk or when identifying those patients who should or should not receive opioids. At the same time, I think we need more community awareness, and we can do this by using the naloxone program or some of the other programs discussed today. Rhode Island sounds amazing, and I am interested to learn more about what is happening out there. The tools we have today can enhance the safety of what we are doing on the medical side and help out there in the community with the substance misuse and illicit side. That is outside of the reach for some of us who do not work in settings where one can reach out to the community, but I think that these types of tools are underutilized. If these tools are utilized on a more frequent basis, and in a more normalized way, we have the potential to reverse what we have seen here with opioids and the subsequent harm caused by them.

 While acknowledging that opioids are still commonly used as part of a multidisciplinary approach to pain management and that opiates are still being misused illicitly, we need to have strategies that emphasize the availability of naloxone so that people can be as safe as possible. As Dr Adler said, this must be normalized, and we need to realize, when we think about this, it is going to take more years than we would like before it will become normalized, but we need to step it up and work toward that.

 I cannot agree more with my colleagues. I think that, when it comes to normalizing naloxone, we need to take the lessons we have learned from what successfully normalizes this method of treatment. Whether it is enacting policy interventions, having naloxone everywhere, putting up billboards, or getting that access. What we are doing is studying people, saying what makes you dispense naloxone, to pharmacists? Saying what makes you dispense it, to primary care physicians? What makes you want to give it, to a caregiver? What are those barriers? How do we break them down? I look forward to the day of over-the-counter naloxone that is still covered by insurance so we do not have financial barriers. There is a lot that we know, areas where we have been successful, and I think that yes, it is going to be around a long time. We have seen how COVID-19 has created these divisions. I think, by solving those divisions during COVID-19, we will solve some of the divisions in access to care for people with opioid use disorder or people who use opioids.

I see naloxone as one part of the puzzle here, one part of the comprehensive approach that we try to take in the emergency department [ED], and that is decreasing the barriers that patients need to overcome to get naloxone. This is improving their access to naloxone not only in the ED but also in other areas of life where they have access to health care, and in their daily lives. Having it available works, whether it is having a naloxone box sitting next to an AED [automated external defibrillator] box somewhere or offering it to patients proactively and not requiring them to have to ask for it.

Additionally, I think that, as science for medication-assisted treatment continues to be redefined every day—how effective that is for treatment—it is our responsibility to not only make sure that our patients are safe as they go out and use this, or that their community is safer because naloxone is out there. But we also need to provide multiple opportunities for patients to get linked to treatment, to be linked to peers, and to have access to medication-assisted treatment. I think this is equally important and should be offered as routinely as possible.

Theresa, some people hate to be the last one to speak when all the good stuff is taken.

Theresa Mallick-Searle, MS, RN-BC, ANP-BC:

heresa Mallick-Searle, MS, RN-BC, ANP-BC: 

As the token nurse on the platform here, I am really big into listening to my patients. It is not that my colleagues are not, but I want to hear what is important to the patient. I want to be able to have them partner with me in their health care. I want to be able to encourage my peers to look at the bigger community and be in it for the long term, to decrease the amount of fear out there. As a health care provider, for anything that we do, we are trying to do the best we can to take care of our patients.

Thank you all very much. I want to thank you at home as well for watching this HCPLive® Peer Exchange. If you enjoyed this content, please subscribe to our e-newsletters to receive upcoming Peer Exchanges and other great content right in your inbox.

I am Dr Peter Salgo, and I will see you again next time.

The multidisciplinary panel of experts share final thoughts on strategies to normalize naloxone and decrease barriers to its obtainment and utilization. 

Final Thoughts on the Opioid Crisis and Normalizing Naloxone

Jeremy Adler, DMSc, PA-C, DFAAPA, Pacific Pain Medicine Consultants 

The future of therapy for ulcerative colitis is really about precision medicine. Right now, we haven’t cracked the code about which drug is the best for which patient. We’re increasingly understanding that the inflammation in ulcerative colitis is driven by multiple pathways, not just one inflammatory pathway. As a result, medications are not a one-size-fits-all and do not work necessarily the same for all patients. We’re increasingly understanding how we can predict which patient will be a nonresponder to which drug. Unfortunately, we’re not quite there yet, but I think with the increase in precision medicine in the next 10 to 15 years we’ll be able to meet a patient, draw a blood test or a stool test, or take a tissue sample, and be able to analyze and understand the pathophysiology of their disease, as each patient is unique with respect to their disease mechanism. I believe the future of ulcerative colitis is in personalized therapy and more selective therapies. There are exciting updates in the future for more selective agents, for example, against the p14 subunit of IL-23 [interleukin-23], more selective agents against the beta-7 subunits. In addition, I think the future of ulcerative colitis is in novel modalities of administration. For example, there are exciting updates for vedolizumab, and that it may shift from an infusion-based therapy to subcutaneous injection-based therapy, offering our patients who are in remission on vedolizumab improved quality of life and less need to be tethered to an infusion center.

One of the most anticipated developments in the field of ulcerative colitis is the use of novel noninvasive methods of monitoring. This primarily includes intestinal ultrasound, as we’re increasingly understanding that ulcerative colitis has transmural features in addition to just mucosal futures. The use of intestinal ultrasound in adjunct with fecal calprotectin and C-reactive protein is an excellent way to monitor your patients in the clinic. It’s a point-of-care test that can be done without preparation, without fasting, and can yield answers within seconds. Intestinal ultrasound will not take the place of a colonoscopy but can be used to monitor a long therapy before a colonoscopy is needed.

For patients presenting with increased stool frequency, urgency, or rectal bleeding, the biggest take-home message is to work up the symptoms quickly. It is to not delay the care or the work-up of the symptoms. Starting with stool studies, laboratory markers, and a referral to gastroenterology, or if they’re already with gastroenterology, a referral for a colonoscopy, is key. We know that a delay to diagnosis can impact long-term outcomes and increase the need for surgery. Therefore, it is important to make the diagnosis early, start the right therapy early, and then get the patient on the path to better care. It is also important to focus on improvement of quality of life and making sure the patient has the right ancillary support. This may involve referral to nutrition, psychology, and social workers to ensure that the patient’s quality of life is excellent and has improved with the therapies available.

As I mentioned, it’s an exciting time where we’ve had multiple new therapies hit the market recently for ulcerative colitis. In the next 1 to 3 years, we’re going to see more therapy, IL-23 inhibitors for ulcerative colitis, which has not yet been FDA approved, and another S1P [sphingosine-1-phosphate ] receptor modulator. If you look at some of these phase 2 trials, the next drugs we’re looking at are some oral medications that have some similar mechanisms of action to our current therapies. They are easier for a patient to take. There are some early data looking at different microbiome therapies, although we must see if that pans out.

When we’re talking about the future of therapy, there have been some interesting data at recent conferences looking at combination biologics. There was one study called VEGA, and it was presented in abstract form. It combined an anti-TNF [tumor necrosis factor] agent, golimumab, with a selective IL-23 inhibitor, guselkumab. What it saw was that this combination therapy did better than either alone, especially when you’re looking at mucosal healing or endoscopic remission. I think these are more of the studies we need to see. As new agents come to the market, we’re not really pushing that ceiling. We’re not seeing significantly higher clinical response or clinical remission rates. We’re having more options for our patients, which is critically important. But if we use some of this combination therapy up front, we might be able to push those response and remission rates. Right now, if we are using combination therapy, it’s usually in our very refractory patients, or patients with extraintestinal manifestations. I think the other focus in the future for ulcerative colitis is that true multidisciplinary approach and taking care of the entire patient, so not just symptoms, but improving the patient’s quality of life.

Treat-to-target is an important concept and something we’ve been talking about now for the past few years. What that means is that we’re not only treating to symptoms, but we also want to heal on the inside or have endoscopic remission, and ultimately in certain cases, histologic remission or true mucosal healing, meaning that on biopsies everything looks perfect. That’s our ultimate goal, but I think it’s important to realize that those targets aren’t attainable for many of our patients. When seeing a patient in the office, you need to set the specific target for that patient. Meaning if you have somebody come in with severe disease who failed multiple medications, maybe complete mucosal healing or complete endoscopic remission isn’t going to be attainable. However, if it’s patient you could put into clinical remission with significant endoscopic improvement, that’s a good target, and that’s OK. To keep pushing or switching is probably not the right thing to do. Treat-to-target is extremely important. But again, the key thing is to set a specific target for a specific patient, and discuss that target with the patient, and discuss how you‘re going to monitor and adjust to reach that target.

I would say the key take-home messages for managing ulcerative colitis, first it’s important to define the extent and the severity of disease, so then you can pick the right therapy for the right patient. Also, it is extremely important to closely monitor the patient. You want to set your target, monitor closely, and continue to monitor less frequently when you hit that target. I think just important, if not most important, is discussing with the patient what their No. 1 concern is when they come into the office. A lot of times, again, we focus on how many times they go to the bathroom, how much pain they’re having. But their No. 1 concern might be, how could they travel for work in the next 6 months? Bringing that up in the conversation, and working with a multidisciplinary team to help reach those patients’ goals and your own personal provider goals, is extremely important.

Drs. Maia Kayal and David P. Hudesman discuss their hopes and future directions in the treatment of patients with ulcerative colitis.

Future Directions in the Management of Ulcerative Colitis

Maia Kayal, MD

Miguel Regueiro, MD

: When the first dual orexin receptor antagonist came out, suvorexant, we started using it then. And it did come out of the 5, 10, 15, 20 mg. We had several different doses. We did prescribe the medication. It did seem to be effective in some patients to help them get to sleep and stay asleep. Lemborexant then came out again helping our patients get to sleep and stay asleep at the 5 and 10 mg dose. Now, daridorexant has come out at the 25 and 50 mg dose. And the interesting thing about daridorexant is at the 50 mg dose has had something unique with it as far as clinical studies showing that there is a decrease in sleepiness in some of the patients compared to placebo when they take that medication on a regular basis. And that's unique to that medication. But again, these dual orexin receptor antagonists by way of reducing one's wake drive, seem to be effective in helping patients get to sleep and stay asleep. And the 3 differ in their half-lives and their duration of action. That's the one. With daridorexant having the shortest duration of action.

In my experience with them has been varied in the sense that I've prescribed all 3 of them with good successes and all 3 of them with some patients doing better with one versus another. But they all are good medications that work quite well for patients who have insomnia. And as far as the adverse effect profile is concerned, all of them seem to have a relatively attractive adverse effect profile, which is relatively low. And the discontinuation rates due to adverse effects also seem to be low with all 3 of them. They are good medications. I have tried all 3. They seemed to fit a lot of patients that have insomnia where you don't necessarily want to use the traditional drugs that you've been using, whether it's the Z-drugs or the ones before. Patients seem to do quite well with these dual orexin receptor antagonists.

Paul Doghramji, MD, FAAFP, shares his personal experience with DORAs in clinical practice to manage insomnia and discusses treatment adherence with insomnia medications.

Using DORAs for the Treatment of Insomnia

Paul Doghramji, MD, FAAFP

COVID-19 has obviously presented significant challenges in our clinical work, particularly in the evaluation, diagnosis, and treatment of patients with ADHD [attention-deficit/hyperactivity disorder] of all ages. What we’ve all done, of course, is acclimate to this, largely through the use of telemedicine, telepsychiatry for a lot of our patients. Although more recently, I’ve gone back to more of a hybrid model where I am seeing some patients live and some via telepsychiatry. 

There are significant challenges. Some of those challenges include the fact that it’s a little more difficult to do an evaluation and to collect all the nonverbal information that you might get from being in the room with a person. Part of the problem is you may be seeing only a portion of the patient’s body. You may not be seeing the lower half of the body if you’re on a virtual call. You might not see some of the fidgeting or hyperactivity, for instance.

Also, what I find is patients either do really well with virtual telepsychiatry or don’t. They have trouble focusing. They get distracted. It’s really important to try to individualize care for our patients. Some people try to do in-person meetings. Ideally, this may be helpful for the initial evaluation so we can collect as much information as possible. When you’re dealing with children, you’d like to have collateral information, so you’d like to have parents and caregivers involved. That can be a little harder too, although it can be done virtually.

As far as prescribing medications, that can present a challenge. Although now, states are going to e-prescribing. In Florida, we now have to e-prescribe all controlled substances. That makes it easier, not having to handwrite a prescription and somehow get it to the patient in a COVID-19 environment.

The other thing I find is that sometimes children do a little better in this virtual environment, but many with ADHD struggle more. There’s a lot more stress and difficulty in school. Obviously, there’s more isolation, so fewer social relationships, fewer extracurricular activities, and maybe less access to exercise, which has been shown to be very beneficial for ADHD. These are some of the challenges that we’re trying to negotiate in the era of COVID-19.

Tele-prescribing of stimulants presents some unique challenges in the era of COVID-19. Part of the challenge is making sure you can e-prescribe appropriately. Most of us have figured out how to do that. Also, you want to make sure the pharmacy is available and shows up on your e-prescribing software. It is required, when we prescribe stimulants, that we monitor certain things. This can be more challenging in this environment, particularly when assessing vital signs, height, and weight. Blood pressure, heart rate, height, and weight can be a challenge in the virtual environment. This is when I may sometimes have the patient come to the office, just for the vital signs and height and weight checks. Or the patient can get 1 of the home monitoring devices, which you can get at many pharmacies. These devices can monitor blood pressure and heart rate. Your patients can check those periodically and report the results to you. Or you can certainly have them email that to you or communicate electronically.

As far as monitoring for abuse and possibility of diversion, this is something we also need to keep our eyes on. We can do this in various ways, including by checking prescribing databases, which can certainly be done online.

As far as monitoring for other issues and problems, such as the emergence of psychotic or manic symptoms or the possibility of vasoconstriction or cardiovascular issues, this is where taking a very careful history and evaluation and trying to look at the patient and evaluate them as best you can on camera really seems to help.

It’s important to understand that when evaluating and treating ADHD, comorbidity is the rule. Three-quarters of patients with ADHD will have a least 1 other comorbid condition. This is important because sometimes our core treatments for ADHD can help alleviate these other conditions. For instance, secondary anxiety or secondary depression. Sometimes, however, we do have to institute specific treatment in addition to the ADHD treatment to address a comorbid condition.

Rakesh Jain, MD, MPH: When parents and their children first come to see me for an evaluation for ADHD, there’s often a lot of confusion. We have a lot of myths in our heads. “Is this bad parenting?” “Was this just because one of us got divorced?” Is it because I had too many Diet Cokes when I was pregnant?” 

My first job is to offer parents and children a combination of sympathy and encouragement. I offer sympathy for the suffering they have gone through and encouragement that, if we do the right thing, we can make a pretty significant difference in all the challenges your child is having and you’re having as parents and caregivers. I have found that injection of enthusiasm, support, and knowledge to be as useful as anything I do.

The second step is really a pretty quick but accurate increase in knowledge base about the disease. Most people are quite surprised to know that it is a neurobiologically active condition. It is an inherited condition. It is a brain-based condition. Even though behavior is what they might see, the child is not being a “bad” child. 

Finally, we need to give an explanation of why interventions work or why a combination of nonpharmacological and pharmacological interventions is best explained in the context of neurobiology. 

When I offer that whole package of information, from sympathy to increasing their enthusiasm and encouragement to disease-state knowledge and then finally medication and nonmedication knowledge, you can see the parents and the child breathe a sigh of relief. “I’ve got a direction. There’s something I can do. I feel empowered.” That is precious. As a clinician, once I see that, I know I have established a solid therapeutic relationship that will lead to good outcomes.

Optimizing care and managing challenges for patients with ADHD during the COVID-19 pandemic and advice for clinicians educating patients and families on disease management. 

Optimizing Care for ADHD During COVID-19 

Rakesh Jain, MD, MPH, Texas Tech University School of Medicine

 I’d love for you to share with the viewers what strategies you have implemented based on your experiences to educate patients about their journey. Because that’s so important, as John has said, about making this a patient-centered diagnosis. What’s a day in the life of Dr Maron and Dr Ommen in how you approach these issues?

 I’ll go first. Like I’m sure Steve does, we spend a lot of time with patients when they come and do our own education with them, along with our health care team and nurse practitioners to educate patients about the disease. We spend a lot of time on education, reassurance, putting these issues that we’ve talked about in perspective, and doing a lot of shared decision-making, going through treatment options. At the end of the day, we try to deliver the message that hypertrophic cardiomyopathy [HCM] is a highly treatable disease. It’s going to probably be more so in the future, but even today it’s very treatable and a disease that’s compatible with normal life expectancy and good quality of life for the vast majority of patients. That’s the messaging that we give to patients the best that we can.

 I’d echo the same thing. Patients come to us after having done their own education attempts on the internet, freaked out with wide eyes because they’ve read all the dramatic stories that are available, and we have to remind them that people who have normal lives don’t usually blog about it.

I’d like to reiterate the same words about HCM in the modern era. We’ve gone from an era where it was 100% fatal in 1958 when Donald Teare described it to a 6% annual mortality in the 1980s to an annual mortality that’s the same as the general population. It’s a highly treatable disease for most patients. There are patients in whom there are issues. This discussion wasn’t about sudden cardiac arrest, which would be another 2 hours. Then there are quality-of-life issues that some patients have. But it’s a highly treatable disease and we’re getting more tools in our toolbox for the future, which is exciting.

 That’s super. Javed, any final thoughts you want to share?

 My final thought is that we have these therapies and we want to do anything and everything that we can for the patients to not unnecessarily suffer. The question is how do we educate the clinical community at large to refer the patients to the appropriate centers and to diagnose and screen these patients? While the specialists are very interested in and have a lot of these tools, more mass education about this disease would also be needed.

 From an administrator’s point of view, let me ask you to put that hat on for a second. When you’re looking at making recommendations for clinicians who are interested in getting involved in this, what things would you say are needed in terms of understanding things like catheter-based approaches, surgical approaches, and volume, which you talked a bit about? What do you think about setting certain expectations?

 You can modify behavior quite a lot by creating appropriate incentive structures in terms of education, screening, and quality metrics. You can also set up tools. We live in this digital age and everybody is on an electronic health record. A lot of the education and best practice advisories can be had for our patients in this era. Education and reminder systems are easier in the current day and age.

 Super. John, I’m going to turn to you last. You always keep the patient in the center. I’m curious to hear your final thoughts.

 First, I’m humbled by the expertise at this panel and not being an HCM expert. I feel a tremendous need to think about the infrastructure for elevating the quality of care throughout the nation. What does that entail? Does it entail thinking about algorithms, building shared decision-making tools, integrating routine assessments of health status with the KCCQ [Kansas City Cardiomyopathy Questionnaire], and coming up with very practical management strategies so that you don’t have to be in Boston or Rochester, Minnesota, to get high-quality care?

 Or Kansas City. That’s what I’m left with. It’s a complicated disease, but it’s an exciting disease. As more treatment options become available, there’s a greater call for thinking about the infrastructure of delivering high-quality patient-centered care. That’s what I’d like to see us move toward so that we can all benefit from the advances being made.

 Super. That’s a great way to conclude. I want to thank all of you for this rich and informative discussion. I want to thank you, our viewers, for watching this 

. If you enjoyed the content, please subscribe for our e-newsletters to receive upcoming 

 and other great content right in your inbox. I’m Jim Januzzi from the Massachusetts General Hospital. Thanks very much for joining.

Expert cardiologists share strategies for educating patients on the treatment and management of hypertrophic cardiomyopathy. 

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