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What Do Patients Want To Know About Their Disease?

As the chair of the Heart & Lung patient organization in Sweden, I organize monthly meetings with patients and provide lectures with information about their diseases.

A year ago I was at a conference called EuroHeartCare (Conference for Cardiovascular Nurses and Allied Professionals) and at that conference a physiotherapist asked me how I know what kind of lectures these patients want. She asked if I actually asked them. Unfortunately, I had to answer that I decided myself what kind of lectures these patients received and I never asked them what they wanted to know. The Physiotherapist told me that they started a research called learning cafés, where they ask patients what information they want. Based on these answers they invited professionals to answer those questions.

When I came home, I was inspired and sent all the patients in the organization an invitation to come with their significant others and discuss what kind of questions they have on their diseases and what kind of information they would like.
I have to admit, I thought I knew the questions they had, but I couldn’t have been more wrong. To my surprise, there was need for other information about heart failure, then I provided. The biggest questions were about sleep, food, and physical activity:
 
“I am sleeping very bad, what can I do to improve this?”
“If I am sleepy during daytime, what is the best thing to do?”
“Is it true that patients with heart failure are more tired than elderly without this disease?”
“Is it possible to change my diet, so I am not that tired?”
“Is there medication to help with my endurance?”
“I heard that I can’t eat broccoli or strawberries, is this true?”
“Is it okay to take diuretic pills later in the evening if I go out for dinner with my family, without going to the bathroom that often?”
“Is it true that I can’t drink more than 2 liters a day?”
“Is there a limit in how much kcal I can eat a day now I have heart failure?”
“Is it only safe to go to the gym (rehab) or walk to be physically active, or are there more ways of physical activity that are safe?”
“If I am short of breath, how do I know if this is because of my heart failure or because of my COPD?”
 
Based on these questions, I now invited researchers to the organization to answer those questions and we organized different ways in being physically active, like exergaming (being physically active by a video game) and medical yoga. For the next meetings, I sent out the program and asked if the patients could give suggestions to add in the program. Patients would like to add aqua jogging, have exergaming bowling competitions between organizations, add groups of Nordic walking and they are enthusiastic on trying medical yoga through an app at home (and the oldest participant is 94 years old!). Additionally, they would like to have wine tastings, trips to castles, trips to a museum and have dinners together (we just had a Valentine’s lunch).

patient playing bowling on a computer - example of exergaming 

Patient playing bowling on a computer
 
The bottom-line of this little blog is that I think that sometimes as researcher we should sit back and ask patients what they would like to know, what is important for them, instead of us deciding for them.

Furthermore, I believe that in able to provide person-centered care, patients and their significant others should co-design interventions and be included in the evaluation of interventions.
 

Leonie Klompstra Headshot
Leonie Klompstra is a Nurse Scientist at the Linköping University in Sweden. Her primary focus is on heart failure and rehabilitations.

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Parsing The Updated 2018 Acute Ischemic Stroke Guidelines: Smoking Cessation

The 2018 International Stroke Conference was headlined by the practice-changing results of DEFUSE 3 and related acute stroke care guideline updates. Having returned to our institutions, neurologists are parsing the updated 2018 acute ischemic stroke guidelines1 and wondering how best to operationalize the latest data.
 
Overshadowed by updated guidelines regarding the extended window and buried among changes regarding the utility of indiscriminate use of routine diagnostic testing, was a change regarding smoking cessation.
 
While the guidelines committee did not find any randomized trials of pharmacological smoking cessation aides specifically for stroke patients, they cite a randomized trial in acute coronary patients:2 patients randomized to receive a pharmacological cessation aide had a significant improvement in abstinence. In terms of observational data, a recent study found that patients with stroke who quit smoking had a reduced rate of cardiovascular disease and mortality over 5 years.3 Based partially on such evidence, the updated guidelines provide a IIb recommendation that “for smokers with an acute ischemic stroke, in-hospital initiation of varenicline might be considered”.1
 
A class I recommendation to “strongly advise every patient with acute ischemic stroke who has smoked in the past year to quit” remains in place and is buttressed with a IIb option to consider “interventions that incorporate both pharmacotherapy and behavioral support”.1
 
While Get With the Guidelines-Stroke has seen a substantial improvement in “appropriate” smoking cessation interventions at the time of hospital discharge,4 a distinction between counselling and pharmacotherapy was not made. Therefore, whether effective smoking cessation interventions are being initiated is unknown.
 
Whereas the extended window guidelines influence care for a small group of acute stroke patients, the smoking cessation guidelines apply to every single acute stroke and TIA patient who is an active smoker. Neurologists, particularly stroke neurologists and hospitalists, should familiarize themselves with the updated guidelines, the relevant data, and pharmacological interventions. 
 
References:

  1. Powers WJ, Rabinstein AA, Ackerson T, Adeoye OM, Bambakidis NC, Becker K, et al. 2018 Guidelines for the Early Management of Patients with Acute Ischemic Stroke. Stroke 2018. DOI: 10.1161/STR.0000000000000158.
  2. Eisenberg MJ, Windle SB, Roy N, Old W, Grondin FR, Bata I, et al. Varenicline for Smoking Cessation in Hospitalized Patients with Acute Coronary Syndrome. Circulation. 2016:133;21-30.
  3. Epstein KA, Viscoli CM, Spence JD, Young LH, Inzucchi SE, Gorman M, et al. Smoking cessation and outcome after ischemic stroke or TIA. Neurology. 2017:89;1723-1729. 
  4. Ormseth CH, Sheth KN, Saver JL, Fonarow GC, Schwamm LH. The American Heart Association’s Get With the Guidelines (GWTG)-Stroke development and impact on stroke care. Stroke and Vascular Neurology 2017;2:doi:10.1136/svn-2017-000092

Neal Parikh Headshot

Neal S. Parikh, MD, earned his MD from Weill Cornell Medical College and completed residency training in neurology at the same institution. He is now an NIH T32 neuro-epidemiology and vascular neurology fellow at New York-Presbyterian Hospital/Columbia University Medical Center. He tweets @NealSParikhMD and contributes to Blogging Stroke as a blogger.

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An Interview With A Physician-Epidemiologist

Many of my fellow bloggers here at AHA Early Career Voice are clinicians, and we’re all busy, and we all see the value in research. I wanted this post to speak to everyone who feels they’re spinning the plates of patient care, research, personal life, and having something to show for it all (besides broken china). Figuring answers from someone who makes it look easy would be a good place to start, I shot my colleague, Stephen Juraschek, MD PhD, an email.

Balancing Act

And you thought juggling was hard…

“Are you going to AHA EPI?”, I ask him on an afternoon phone call. “Yeah! Have you been to New Orleans before?” No, I reply. He hasn’t been either. We’re both excited to reconnect with colleagues in epidemiology and lifestyle prevention at the annual specialty conference held in March. This year it’s in New Orleans. Next year is Houston.

Connected by our time at the Johns Hopkins Bloomberg School of Public Health Welch Center for Prevention, Epidemiology and Clinical Research, we talk about what distinguishes a clinical investigator from an epidemiologist, and how he straddles both worlds. An internal medicine doc at Beth Israel Deaconess Medical Center, Stephen sees patients twice a week, and spends the rest of his time analyzing data, writing papers, and collaborating with colleagues.

I thought of Stephen for this feature post because I’m continuously impressed by the volume (and quality) of publications he produces. PubMed notes 64 articles authored by Stephen since 2008. A dual MD-PhD, he’s also got around 1,136 citations for his papers on diabetes, hypertension, the DASH diet, ARIC, and more. At AHA Scientific Sessions last November in Anaheim, California, Stephen presented his recent research on the DASH diet (read more in my post “Incorporating Scientific Sessions into Everyday Life”). In the few months since, he’s had 3 more first author papers go to print.

When asked how he balances work as a clinician and his research, he had some good pointers. While having protected research time from his K-award certainly helps schedule wise, his desire for his “research to be complimentary to what [he does] with patients in clinic” makes the straddle more seamless. While the topic, like blood pressure, may exist in both his worlds, the skills used are very different. “In clinic,” he starts, “you’re focused on that one patient, assessing priorities for that one visit. When you’re doing research, it’s macro, it’s population based.” The question that seems to drive Stephen is the desire to “understand diseases on a larger scale” and doing research to “move the needle of health towards benefitting more people”.

Switching gears, I launch into my next question.

“What do you feel are the keys to success as an early career investigator, whether from the clinical perspective or the research perspective?”

Without skipping a beat, he responds: “It depends on how you want to define success.” 

 Definition of Success
 
The key to success depends on how you define it.
 
And that is so true. We’ve all read an article or two about work-life balance, setting goals, planning out your career, and the like. But Stephen lays it out simply: “Reflect on what makes you happy,” he recommends, “and think about what gets you excited.” Personally, as a doctoral student, the task of finding a dissertation topic (or that I don’t have one yet) is daunting. It’s easy to push it to the back of my mind and focus on coursework and current research projects. I don’t kick myself for doing that, though, because I have a plan. I choose my research projects and experiences carefully, with the goal of exposing myself to many different advisors, working styles, topics, and methods. An older student reflected on how she came upon her dissertation topic – when she tabulated all the projects she had worked on up to that point, they all centered around one topic. But she didn’t see the pattern until she sat down and thought it through.

Stephen identified his passion earlier as making a lasting impact on others in a positive way. Expanding on this idea seen in many researchers, clinicians, and public health professionals, he notes that “for some people, that is excellence in patient care…and [for] other people it’s policy and implementation and integration of scientific discovery…and for others, it’s doing the science.” His current role as physician-epidemiologist is clear in his passion: “I strive to include clinical excellence in my professional trajectory, and at the same time, incorporating scholarship and generating novel insights from data to guide our care.”

He notes that, like many of us, his trajectory hasn’t been a straight shot. Our conversation morphs into one of mentorship, as he describes his strategy as finding projects he feels passionate about, and then finding other people passionate about that, too. But when he first started as a trainee, that strategy often meant finding a mentor passionate about something, and then trying that passion on for size. Working with different people on a number of projects helped him identify what worked for him, what didn’t, and let him refine his writing process because, quoting a colleague Joe Coresh at the Welch Center: “to write a good paper, you have to write a lot of papers.”

After going through my first peer-review publication process just recently, I was heartened to hear Stephen admit that despite his now-refined writing process, his first paper did not go so smoothly. A math major in undergrad, Stephen relates that while his quantitative skills were great, it took him his first few papers to get the hang of the scientific writing process.

“Research is a very humbling process,” he tells me. “There are always going to be people who find issues with your work, or think there is a better way to say something. It can be discouraging. I remember being a trainee and just wanting to throw in the towel sometimes. But persevering through the process, knowing that the process is meant to make the product better, is a key mentality to have in research. Every time I’ve written a paper, I feel I have a better sense of what the message should be.”

He brings up a larger issue. When we see a successful person, we don’t often see the struggle behind the success. Learning from difficult experiences is often what catapults someone into success, and you can learn from their experience, too. You just have to ask.

Last month I wrote about “Making Epidemiology Make Sense for Clinicians”. Along the same lines, we wrap up our phone call with a final thought – how can clinicians and epidemiologists come together?  

“Clinicians should feel empowered to make observations and ask practical questions.” Often, researchers are entrenched in data, not the day-to-day aspect of medicine, and “it can hamper the research process to not ask the right questions.”

When clinicians and epidemiologists partner together, they can leverage data to answer questions in a way that is very useful in the practice of medicine.

What plates are you spinning? I know I’ve got a few on board.

Bailey DeBarmore Headshot

Bailey DeBarmore is a cardiovascular epidemiology PhD student at the University of North Carolina at Chapel Hill. Her research focuses on diabetes, stroke, and heart failure. She tweets @BaileyDeBarmore and blogs at baileydebarmore.com. Find her on LinkedIn and Facebook.

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An Early Career Perspective On International Stroke Conference 2018

I have come to look forward to the annual International Stroke Conference each year. Due to the largess of my mentors and support of my residency program, I have had the good fortune of attending the conference each year since my third year of residency. As a third-year resident, I had decided to pursue fellowship training in vascular neurology, and attending the conference amplified my enthusiasm for the field and inspired me to contribute to stroke science. This fueled my passion for stroke research, which ultimately led me to my current fellowship in stroke and neuro-epidemiology at Columbia University. 

First, I want to advocate for resident-level participation in the conference. Exposure to late-breaking science, hearing from leaders in the field, and socializing with members of your institution’s stroke division – these are invaluable opportunities. Now, returning for a third time, I have begun to feel a member of the community. Early attendance may inspire residents to pursue research and provide them with a sense of the scope of current investigation and the priorities of the field. 

This years, as a fellow, I attended the conference with more specific goals. I outlined research areas that I am interested in and scrutinized the program in advance to identify key talks and poster presentations. This allowed me to identify opportunities for future study and to meet individuals to collaborate with. Equally importantly, I had a reunion with friends and classmates from medical school and residency. Speaking with friends 1-3 years ahead in their careers is particularly informative because they provide good guidance. Last, the release of game-changing data created an electric atmosphere that motivated me and surely other early career attendees as well. 

Some of my early career colleagues have reported avoiding the conference when not presenting data. For the reasons outlined above, I encourage residents interested in stroke and stroke fellows to attend and earnestly participate regardless of whether they have data to present. I also encourage program directors and chief residents to encourage resident participation and to make schedule adjustments to permit attendance. Medical students should be similarly included. 

I look forward to attending the conference in Honolulu next year! 

Neal Parikh Headshot

Neal S. Parikh, MD, earned his MD from Weill Cornell Medical College and completed residency training in neurology at the same institution. He is now an NIH T32 neuro-epidemiology and vascular neurology fellow at New York-Presbyterian Hospital/Columbia University Medical Center. He tweets @NealSParikhMD and contributes to Blogging Stroke as a blogger.

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Of Mice And Men

I have run into zealous naysayers from both camps. From a clinical researcher: “Human trials are the ultimate, difficult to run, very different from animal studies which may have no clinical relevance.” From a bench scientist: “Epidemiologic studies are trash in, trash out. Well designed animal studies are real science that will advance health.”
 
There’s an element of truth to both sides. Patient trials are complex and costly, liable to inter-subject variation (diabetic nephropathy is notorious), lag-time bias, selection bias, and in the case of non-blinded trials there is potential treatment effect due to patient preference (see blog by #AHAEarlyCareerBlogger @LeonieKlompstra). Thus truly successful RCTs are uncommon. At #ISC18, it was remarkable to hear the findings from the DEFUSE 3 trial which showed that in select patients with suitable brain imaging profile, thrombectomy for ischemic stroke beyond the traditional 6-hour window (a 6-16 hour timeframe was specified) conferred improved functional and mortality outcomes compared to medical therapy alone. The trial was terminated early due to efficacy superiority, with a staggering number needed to treat (NNT) of two. The NNT declaration incited spontaneous cheering from the audience – uncommon at scientific meetings where we politely applaud at the end of talks – because it is rare to see such robust positive RCT outcomes.
 
For identifying at-risk cohorts or new targets for preventative healthcare, epidemiology is essential. The inherent limitation here is that correlation is not causality. With a large database (thousands of patients) sophisticated tools for multivariate and time-varying adjustments can result in a dizzying array of associations that have to be carefully interpreted. (Simple illustrative case: positive correlation between higher number of firemen in areas with more fires. The firemen didn’t cause the fires. I hope.)
 
Animal studies have their niche in that they allow for evaluation of disease or drug pathways in a living model when a human study is not feasible. Animal studies are fraught with their own set of flaws, the most prominent being translational failure due to the model not adequately replicating human disease. Dr. Jun Chen gave the Thomas Willis Lecture at #ISC18 and pointed out the importance of streamlining integrative methods in stroke models to make them clinically relevant. The majority of animal trials will not translate into approved clinical interventions, but still serve to advance our understanding of pathophysiology and drug effects. Some major discoveries (including insulin, erythropoietin, klotho, aspirin, and numerous anti-cancer therapies) would not have been possible without judicious animal research.
 
Advancements in patient care would not be possible without both basic science and patient trials (some impressive folks out there wear both hats!). Bench and clinical research each have their strengths and limitations and deserve to be critically interpreted, while prioritizing exchange of ideas and constructive feedback to collectively move medicine forward.
 
Wei Ling Lau Headshot
Wei Ling Lau, MD is Assistant Professor in Nephrology at University of California-Irvine, where she studies vascular calcification and brain microbleeds in chronic kidney disease. She is currently funded by an AHA Innovative Research Grant, and has been a speaker for CardioRenal University and the American Society of Nephrology.

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DEFUSE 3 Definitively Expands The Endovascular Therapy Window

Writing from the 2018 International Stroke Conference, it is difficult to report on anything other than the game-changing results of DEFUSE 3. After years of clinical suspicion that endovascular therapy works, definitive evidence establishing the role of endovascular therapy in acute stroke care was first presented at the International Stroke Conference in 2015. Since then, there has been great interest in maximizing the yield of this highly effective therapy. Extending the original window of 0-8 hours has been of particular interest.

Imagine being called the emergency department to find a patient who woke up severely disabled by their stroke only to determine that the last time they were seen well was at dinner the night before. Unable to definitively conclude that their stroke began within the last 6-8 hours, you are unable to provide any therapy beyond standard supportive medical care. The patient worsens while in the hospital and is discharged to a nursing home or subacute rehabilitation facility. 

This is not an uncommon situation. So, learning today that the window for intervention can be extended safely and effectively to 16 hours was moving. The DEFUSE 3 data showed that properly selected patients stand to benefit immensely from endovascular therapy, and these data will arm neurologists with yet another highly impactful intervention to offer patients. By confirming the results of the DAWN trial, which extended the window to a full 24 hours, DEFUSE 3 settles the issue. 

Now, stroke systems of care need to quickly adapt to this new reality so that we can help patients benefit from the remarkable progress of stroke treatment science.
 
Reference:

  1. Nogueira, et al. Thrombectomy 6 to 24 Hours after Stroke with a Mismatch between Deficit and Infarct. NEJM. 2018; 378:11-21.
    Albers et al. Thrombectomy for Stroke at 6 to 16 Hours with Selection by Perfusion Imaging. NEJM. 2018. Ahead of print.

Neal Parikh Headshot

Neal S. Parikh, MD, earned his MD from Weill Cornell Medical College and completed residency training in neurology at the same institution. He is now an NIH T32 neuro-epidemiology and vascular neurology fellow at New York-Presbyterian Hospital/Columbia University Medical Center. He tweets @NealSParikhMD and contributes to Blogging Stroke as a blogger.

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Stroke Advances In 2017: An Overview, Reflections, And A Call To Action

2017 gave us numerous dramatic advances in stroke neurology. We were treated to compelling data regarding the favorability of patent foramen ovale closure in well-selected individuals with cryptogenic stroke.1,2,3 Endovascular therapy matured with the extension of the treatment time window.4 We even saw promising rehabilitation data regarding surgical nerve transfer for chronic spastic arm paralysis.5 Conversely, some widely used therapies such as head positioning6 and oxygen supplementation7 were shown to be ineffective. The list of figurative leaps goes on.
 
As an early career neurologist in a vascular neurology fellowship, I found myself reflecting on the year’s advances, in part to find my place in the field. While thoroughly inspired by the major advances of 2017, I couldn’t help but dwell on the findings of a secondary analysis of the Insulin Resistance Intervention After Stroke (IRIS) trial.
 
The IRIS trial randomized non-diabetic patients with stroke or TIA to pioglitazone or placebo and followed them for several cardiovascular outcomes.8 The primary analysis was published in 2016; patients randomized to pioglitazone had a lower risk of recurrent stroke or heart attack.
 
In a secondary analysis published in Neurology in 2017, Katherine Epstein and colleagues evaluated the association of smoking cessation and recurrent stroke, myocardial infarction, and death.9 In an observational design, they followed individuals who were smoking at the time of their index stroke and quit, and compared them to individuals who did not quit. The 5-year risk of stroke, MI, or death was 16% in quitters versus 23% in non-quitters (adjusted hazard ratio 0.66). Quitters had half the risk of death compared to non-quitters.
 
Granted, this was observational data. Individuals who were motivated to quit smoking may have made other healthy decisions. And, these results are not ground breaking either – we know that smoking cessation is “the most important thing one can do for one’s health” (as we are taught to tell patients in medical school).
 
Regardless, the results are memorable. While advances in acute stroke care, surgical interventions, and novel pharmacotherapies are a testament to scientific ingenuity, we must not neglect the low-hanging fruit. Are neurologists trained to effectively aide in smoking cessation? What are the best tools for this purpose? Are such services adequately incentivized? Some argue that advances in stroke systems of care may now yield more public health gains than scientific advances. If we accept this notion, we must acknowledge that it does not apply exclusively to the acute stroke treatment arena.
 
Included in the AHA/ASA’s Life’s Simple 7 paradigm, and a focus of the FDA’s newest public education campaign entitled “Every Try Counts”,10 smoking cessation deserves our fullest attention. To support these programs and to empower our patients to quit, we must identify and incorporate the best tools available into our practice.  

References

  1. Mas JL, Derumeaux G, Guillon B, Massardier E, Hosseini H, Mechtouff L, et al. Patent Foramen Ovale Closure or Anticoagulation vs Antiplatelets after Stroke. NEJM. 2017:377;1011-1021.
  2. Saver JL, Carroll JD, Thaler DE, Smalling RW, MacDonald LA, Marks DS, et al. Long-Term Outcomes of Patent Foramen Ovale Closure or Medical Therapy after Stroke. NEJM. 2017:377;1022-1032.
  3. Søndergaard LKasner SERhodes JFAndersen GIversen HKNielsen-Kudsk JE, et al. Patent Foramen Ovale Closure or Antiplatelet Therapy for Cryptogenic Stroke. NEJM. 2017:377;1033-1042.
  4. Nogueira RG, Jadhav AP, Haussen DC, Bonafe A, Budzik RF, Bhuva P, et al. Thrombectomy 6 to 24 Hours After Stroke with a Mismatch between Deficit and Infarct. NEJM. 2018:378;11-21.
  5. Zheng MX, Hua XY, Feng JT, Li T, Lu YC, Shen YD, et al.
  6. Anderson CS, Arima H, Lavados P, Billot L, Hacket ML, Olavarria VV, et al. Cluster-Randomized, Crossover Trial of Head Positioning in Acute Stroke. NEJM. 2017:376;2437-2447.
  7. Roffe C, Nevatte T, Sim J, Bishop J, Ives N, Ferdinand P, et al. Effect of Routine Low-Dose Oxygen Supplementation on Death and Disability in Adults With Acute Stroke: The Stroke Oxygen Study Randomized Clinical Trial. JAMA. 2017:318;1125-1135.
  8. Kernan WN, Viscoli CM, Furie KL, Young LH, Inzucchi SE, Gorman M, et al. Pioglitazone after Ischemic Stroke or Transient Ischemic Attack. NEJM. 2016:374;1321-31.
  9. Epstein KA, Viscoli CM, Spence JD, Young LH, Inzucchi SE, Gorman M, et al. Smoking cessation and outcome after ischemic stroke or TIA. Neurology. 2017:89;1723-1729.
  10. Every Try Counts Campaign. Food and Drug Administration. https://www.fda.gov/tobaccoproducts/publichealtheducation/publiceducationcampaigns/everytrycountscampaign/default.htm

Neal Parikh Headshot

Neal S. Parikh, MD, earned his MD from Weill Cornell Medical College and completed residency training in neurology at the same institution. He is now an NIH T32 neuro-epidemiology and vascular neurology fellow at New York-Presbyterian Hospital/Columbia University Medical Center. He tweets @ NealSParikhMD and contributes to Blogging Stroke as a blogger.

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Nursing And Allied Professional Sessions At The American Heart Association

During the American Heart Association Scientific Sessions, there were great sessions. It was really a struggle to make an overview of all the nurses and allied professional sessions in a short blog; they were just all very interesting and informative. But I summarized the topics that were for me the most interesting during the Sessions.
 
Adherence to medication use
Dr. Todd Ruppar (@ToddRuppar) presented the importance of the use of behavior prompt for cardiac patients to remember medication intake. Dr. Ellis presented one of the new examples of these behavioral prompt: the printable pillboxes with the possibility to connect to a mobile app (InterACT Pillbox).

Slide showing example of printable pill box with app capabilities

Dr. Rhonda Copper-deHoff suggested that pharmacogenetic testing could be a piece of the adherence puzzle in cardiac patients and Dr. Anton Vehovec (@antonvehovec) points out that medication adherence mediate the relationship between memory and emergency room visits and hospitalization. He stated that we should test interventions that aim to improve memory and look at the effect this has on medication adherence.

 

2. Technology use
Dr. Maria Liljeroos’ (@MartorMaria) research showed that telemonitoring is feasible to implement, but that we have to remember that it is still a challenge to include older cardiac patients.

Dr. Megan Reading gave a talk on technology use in patients with atrial fibrillation. In her research, they found that being asymptomatic was the main reason for not using technology. Also traveling and simply forgetting to use the technology were important reasons for not using it.

Dr. Mary Dolansky found in her research that the current evaluation of technology used to measure self-care behaviors, such as activity monitors, is insufficient. Future research should be focused on evaluating technologies for measuring and use in self-care in cardiac patients.

examples of self care measures slide

3. Palliative care/end of life in cardiac patients
A quote of Isaac Asimov, which Dr. Lisa Kitko used in her presentation, presents the importance of palliative care in cardiac patients:

Life is pleasant death is peaceful it's the transition that troublesome - Isaac Asimov

She further stated that we should remember that 67% of all patients with an LVAD have 5 or more comorbidities.

Dr. Lorraine Evangelista brings up in her presentation the importance of optimal palliative care in the beginning of the heart failure trajectory. She also presented a poster of Lisa Hjelmfors on the importance of communication about the heart failure prognosis in the US and Europe. And although most nurses think they have knowledge on prognosis and the communication with the patients, around 70% would like further education about this topic.

Dr. Dougherty gave a talk about technology advances create complex decision making for patients, family and providers. Health care professionals need to have conversations and discussions about device management at end of life.

Dr. Loreena Hill (@HillLoreena) and Dr. Donna Fitzsimons (@FitzsimonsDonna) stated that there is a paradigm shift regarding when deactivation should be discussed and who is responsible in long overdue if end of life care for patients with an ICD is to improve.

Study Characteristics

4. The importance of involving caregivers
Dr. Anna Strömberg (@Anna_Submitting) talked about the importance of involving caregivers and the support and education these caregivers want. Caregivers would like easy access to health care and support groups with caregivers alone. This could help them to handle their life situation.

J.N. Dionne-Odem (@jn_dionneodom) pointed out that caregivers are vital in care for patients with heart failure, but that we have to realize that only 1 in 3 are comfortable giving heart failure care.

A poster presented by Dr. Hiroko Ishida shows the importance of health literacy in caregivers. They found that health literacy of patients with heart failure and their caregivers was independently associated with caregivers burden.

5. Diet, fluid restriction and appetite
Dr Anna Strömberg (@Anna_Submitting) stated the importance of the need for more research in nutrition and fluid restriction and Dr. Lennie presented that we are all on a diet, but that just finding the best food for you, as a person is a challenge. Dr. Martha Biddle advised that cardiac patient should have a healthy, varied diet. She even presented a recipe for a cardiovascular health:

recipe for cardiovascular health slide

Dr. Lora Burke suggests that mobile apps could be a tool for nutrition research to increase adherence. Mobile apps could give feedback to the patients, which could improve dietary choice/eating behavior by make patients more aware of their choices. Dr. Misook Chung presented a poster concluding that diet quality was similar in patients with heart failure regardless their adherence to sodium restriction diet. Christina Andrea’s (@C_Andreae) poster demonstrated that patients who are more physically active have better appetites compared to those who are less physically active. This research underscore that in future studies, a need is for attention on physical activity and appetite.

physical activity and appetite in patients poster

6. Physical activities
Dr. Tiny Jaarsma (@DrJaarsma) presented a new way for patients in cardiac care to be active at home: Exergaming. Exergaming is being physical active with a gaming computer. In her research, (@HFWii) they found that installing such a computer at home with patients with heart failure increased their exercise capacity.

Another promising and alternative way to exercise in community-dwelling older adults, presented by Dr. Marjorie Funk, was Qigong. Qigong is a form of exercise composed of movements that are repeated a number of times, often stretching the body, increasing fluid movement (blood, synovial, and lymph) and building awareness of how the body moves through space. This research showed that Qigong was feasible for older adults and that they accepted this form of exercise. This research group next step is to test this on cardiac patients.

A intervention presented was the Heart Up!, (a text message intervention) showed promising in improving in physical activity and decreasing hopelessness in patients with ischemic heart disease.

Leonie Klompstra Headshot

Leonie Klompstra is a Nurse Scientist at the Linköping University in Sweden. Her primary focus is on heart failure and rehabilitations.

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Precision Medicine Through Big Data – A Game Changer

From clinical science supported by data to data science supported by clinicians

AHA Badge
We live in an era of a tremendous amount of information. Scientific research is particularly well suited by the possibilities offered by analyzing large sets of data. In the past, data has been locked up in individual data bases and were not openly shared or available. Over the last two decades access to data has been improved and more open sources for analyses are now available. With advancements in technology, including cloud computing, big data is now available to all researchers. Information gained from big data needs to be translated into knowledge.  Acute and chronic disease is a complex process and often displays itself in a variety of phenotypes with different outcomes. Consequently, data has to be complex in order to identify subgroups, to define disease phenotypes, and precise treatment strategies.

I recently attended the AHA Scientific Sessions meeting the “Early Career Day” to learn more about the AHA – Precision Medicine Platform (AHA-PMP) to access and also upload my own data and use the provided workspace, which is especially great for teams. Additionally, to AHA-PMP other data portals were presented and explored in small groups. These open portals included cardiovascular, cerebrovascular, and diabetes research such as the Cardiovascular Disease Knowledge Portal (CVDKP; broadcvdi.org), cerebrovascularportal.org (CDKP) and the type2diabetesgenetics.org (T2DKP) portal.

The goal of these platforms is to accelerate analyses of the genetics of cardiovascular and cerebrovascular disease as well as diabetes. For example, the CVDKP is an open-access resource that facilitates the translation of genomic data into actionable knowledge for better understanding and treatment of cardiovascular disease. For example data in the CVDKP are from 4 large Consortia namely the Atrial Fibrillation Consortium (AFGen), the Global Lipids Genetics Consortium (GLGC), the Myocardial Infarction Genetics Consortium (MIGen), and the CARDIoGRAMPlusC4D Consortium. The CVDKP was built on the Knowledge Portal platform originally designed for the Type 2 Diabetes Knowledge Portal (type2diabetesgenetics.org), which was produced by the Accelerating Medicines Partnership In Type 2 Diabetes.  It is part of the Knowledge Portal Network, which also includes the Cerebrovascular Disease Knowledge Portal (CDKP: cerebrovascularportal.org). Data in the CVDKP include GWAS data for CVD and other traits (anthropometric, glycemic, renal, and psychiatric traits), exome chip data, whole exome sequence data, disease-agnostic genomic resources and epigenomic data. Further, with evolving results from big data a paradigm shift in science has been recognized. While over the last few decades medicine has been mostly clinical science supported by data; now medicine is about to become data science supported by clinicians and artificial intelligence and machine learning (deep learning)  plays an important role. This new frontier of data science, provides a greater opportunity especially for younger investigators to develop and drive their own projects.

However, despite the widely endorsement of sharing data and the availability of open sources and platforms, the rate that these data are accessed and utilized are still low. This is one reason AHA wants to promote these valuable resources further to advance our understanding in medicine and facilitate new therapies.

The perception that open source data are underutilized is supported by recent studies.  A just published analysis showed that for example cardiometabolic study data from patient-level clinical trial data are less accessed than previously assumed. In this study by Vaduganathan et al. data were extracted from ClinicalStudyDataRequest.com, a large, multi-sponsor data-sharing platform hosting individual patient-level data from completed studies sponsored by 13 pharmaceutical companies. Over the last 4 years, the platform had data from 3374 clinical trials, of which 537 evaluated cardiometabolic therapeutics covering 74 therapies and 398 925 patients. Diabetes mellitus and hypertension were the most common study topics with a median follow up time of 79 months. As of May 2017, despite availability of data from more than 500 cardiometabolic trials in a multi-sponsor data-sharing platform, ClinicalStudyDataRequest.com, only 15% of these trials and 29% of phase 3 or 4 clinical trials have been accessed by investigators and almost all researchers were from academic centers in North America and Europe. Of note, only half of the proposals were funded, and most proposals were for secondary hypothesis-generating questions. To date, after a median of 19 months (9-32 months) only 3 peer-reviewed articles have been published.

Further, when analyzed if male and female researchers were requesting data access equally, the investigators found that only 15 % of female researchers accessed data while the majority, with 85%, were men.

In conclusion, during “Early Career Day” I learnt that available open sources for big data analysis are underutilized and researchers who access scientific data are predominately men.  Data platforms provide a huge opportunity for researchers, and especially women, to generate hypotheses which may then lead to (further) funding.

 Tanja Dudenbostel Headshot
Tanja Dudenbostel is an Internist, Hypertension Specialist within Cardiology at the University of Alabama at Birmingham where I divide my time as an Assistant Professor between clinical research and seeing patients in cardiology.

 

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A Personal Take On The Interventional Trials At AHA Scientific Sessions

American Heart Association Scientific Sessions always been inclusive of all cardiology specialties. Despite this breadth of science, each subspecialty in cardiology get enough depth to improve patient’s outcome.

Trials of interventional nature had big presence at the Scientific Sessions 2017. The PRESERVE trial was one of the landmark studies presented at the sessions. The study was run by VA which show the Among patients undergoing coronary angiography with chronic kidney disease, a strategy of IV sodium bicarbonate or oral acetylcysteine yielded no additional benefit for the prevention of death, dialysis or persistent kidney impairment at 90 days. This study put to rest a long debate of IV sodium bicarbonate or oral acetylcysteine use for prevention of acute kidney injury showing no benefit in either strategy. Going forward, interventionalist should feel comfortable not to use either strategies which will decrease complexity of care and cost. This study prove that Veterans Affairs Health System is able to deliver an important study to answer critical and practice changing question.

COMPASS trial is another interventional-related study which has been published before and showed decreased cardiovascular events in patients randomized to ASA plus low dose atherosclerosis versus aspirin alone. in patients with stable atherosclerosis. At the Scientific Sessions, the cost analysis showed decreased cost with ASA plus low dose rivaroxaban compared with ASA alone driven by the lower ischemic events in both CAD and PAD patients, as well the decrease in number of procedures required (i.e. angiogram, intervention, amputations, etc.). However, since the actual cost of this dose of the drug is yet unknown, overall cost savings and cost-effectiveness analyses are unavailable at this time.

Moving along, another important study looking into the antithrombotic regimen for patients with indication for anticoagulation undergoing coronary intervention. The RE-DUAL PCI trial was already published, but what presented at the sessions is sub-group analysis that focused on patients with acute coronary syndrome (ACS) and non-ACS at index event. Majority of patients received clopidogrel, while 12% of the patients received ticagrelor either as part of dabigatran dual therapy or warfarin triple therapy. The dabigatran dual therapy regimen used dabigatran and a P2Y12 platelet antagonist, while warfarin triple therapy combined warfarin, aspirin and a P2Y12 platelet antagonist.  In the study, 83% of cases, DES was used, and were similar in patients with ACS and non-ACS. The study showed, that dabigatran with P2Y12 inhibitor is superior to triple antithrombotic strategy. More bleeding, obviously in the triple therapy group with no efficacy in terms of lower ischemic complications.

Another study that provided evidence for what we do in practice was the POISE-2 trials. The goal of the trial was to evaluate perioperative aspirin compared with placebo and perioperative clonidine compared with placebo among patients undergoing non-cardiac surgery. The POISE-2 trial showed that among unselected patients undergoing non-cardiac surgical procedures, neither the perioperative use of aspirin, nor clonidine, was beneficial in reducing the incidence of death or myocardial infarction. However, benefit was observed with aspirin among patients with prior stenting. This is consistent with what most cardiologists are practicing, where they recommend ASA continuation throughout the non-cardiac surgery for patients with previous PCI.

Different studies with different aims related to interventional cardiology presented at the sessions.  AHA Scientific Sessions continues to support all cardiovascular specialties bringing science to practicing cardiologist that answer practice-based clinical questions and, more importantly, saves lives.

Chadi Alraies Headshot
M Chadi Alraies, MD is an interventional fellow and vice chair of Council on Clinical Cardiology Fellow-In-Training & Early Career Committee of American Heart Association.