Nursing research at Heart Failure congress 2018 in Vienna, Austria

The 26th-29th of May I went to the Heart Failure Congress 2018, Including the World Congress on Acute Heart Failure in Vienna, Austria. The congress had over 5,750 participants from over 80 countries. To see all the tweets during this congress, search for the #HeartFailure2018.

This year there were a lot of interesting talks and I would like to highlight a few in this blog.

Dr. Tiny Jaarsma gave a talk about sex and heart disease. Pointing out that heart disease can lead to sexual problems. Furthermore, patients think that sexual counseling should be part of cardiac rehabilitation, which is often not a subject that is discussed. Patients prefer to receive written material and/or individual discussions.

Dr. Cecilia Line from @karolinskaint pointed out that one third of patients with an ICD are not aware that they can deactivate their ICD. Furthermore, patients with ICDs would like to be informed especially when the life expectancy is short. And we should remember, according to Dr. Anna Strömberg, that patients with an LVAD are going through a transition in life and that there are psychosocial challenges in patients with an LVAD. See her take-home messages in the pictures below.

managing patients psychosocial distress slide

Some talks highlighted the importance of frailty in cardiac patients. Dr. Inger Ekman from @SahlgrenskaAcad discussed the importance of screening for frailty in cardiac patients and suggested existing instruments to do so (see picture below). Dr. Kentaro Kamiya’s research showed that frailty is associated with clinical outcomes in elderly patients hospitalized for heart failure, which indicates that frailty is useful for prognosis in in hospital settings.

frailty instruments slide

In the late breaking trials, the results of the HF-Wii study were discussed. This study proves that exergaming (being physical active through video gaming) has positive influence with the exercise capacity and wellbeing of patients with heart failure. See an interview about this study during the interview. In a poster presenting a sub-study of the HF-Wii showed that exergaming could also be feasible for patients with an LVAD, and patients especially liked to exergame with their grandchildren.

conclusion slide

There was also a great session on alternative ways to be physically active in patients with heart failure. One of the alternative ways was presented by Dr. Anna Strömberg: medi-yoga. Read more about medi-yoga. A second alternative way to exercise was presented by Dr. Taylor-Piliae: Tai-Chi. And a third way presented by Dr. Tiny Jaarsma was exergaming. In this session Dr. Von Haehling pointed out that testosterone therapy could increase exercise capacity. Dr. Massimo Piepoli concluded that half of the patients with heart failure are denied a highly recommended therapy and that scientific societies should strongly promote a well-recognized therapeutic tool to improve exercise capacity, quality of life and outcomes in patients with heart failure.

exergaming has physical and quality of life benefits for heart patients flier

And last but not least, I would like to congratulate Lilas Ali, who won the nursing investigator award session with her research that showed that person-centered telephone-support is effective in patients with chronic obstructive pulmonary disease and/or chronic heart failure (see picture below).

photo of women receiving award

Please save the date for next years’ Heart Failure congress 2019, 25-28th of May 2019 in Athens, Greece.

save the date for heart failure and world congress on active heart failure

Leonie Klompstra Headshot

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


When and how do we discuss prognosis and end-of-life with patients with heart failure?

A topic that is lately much discussed on cardiac congresses is the discussion of prognosis and end-of-life with patients with heart failure. Who is responsible to discuss these difficult topics? When should these topics be discussed and how do patients like to discuss this in their heart failure care?

In a recent doctoral thesis, Lisa Hjelmfors explored the prevalence and practice of nurses discussing prognosis and end-of-life care with patients with heart failure and the nurses’ perspectives regarding discussing prognosis and end-of-life care.
One of the articles presented in her thesis was accepted for a poster presentation at #AHA17 (see picture).

 Prof. Lorraine Evangelista, Prof. Tiny Jaarsma, Prof. Anna Strömberg
Prof. Lorraine Evangelista, Prof. Tiny Jaarsma, Prof. Anna Strömberg

Her research showed that most nurses discussed prognosis and end-of-life care with a patient with heart failure at some point in their clinical practice. Although they found that they have a role in these discussions, they found that the main responsibility for this discussion is with the physician. Together with sexuality, discussing prognosis and end-of-life are the least frequently discussed topics in heart failure clinics. I addressed in an earlier blog on sexual counselling in cardiac rehabilitation.

Lisa Hjelmfors points out that end-of life care should be included as a part of the daily routine at heart failure clinics and nurses should be encouraged to take more responsibility for discussing prognosis and end-of-life with patients and their care-givers.

Communication with patients with heart failure should always be tailored, this is strengthened by the findings in her research that patients have different preferences in discussing prognosis and end-of-life.

But a lot of research is yet to come. We have to find good ways to make it easier to discuss end-of-life and prognoses for both nurses and patients. End-of-life simulations could provide successful and appreciated learning situations for nursing students, teaching them communication skills in challenging situation.  A prompt list could help patients to initiate discussion. Research is also needed on how to include care-givers in discussing end-of-life and prognosis and look at their perspectives on these discussions.

Click here to read Lisa her whole doctoral thesis.

Sketch of Communication about the heart failure trajectory in patients, their families and health care providers


Leonie Klompstra Headshot

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



Appetite: An Important Symptom To Assess In Patients With Heart Failure

Today I attended an impressive defense of Christina Andrea (@C_Andreae) of her PhD dissertation on appetite in patients with heart failure. She highlighted the importance of a symptom in patients with heart failure, that is rarely assessed: Appetite.

Appetite in patients with heart failure cover

Appetite, or the desire to eat, is a common problem in patients with heart failure. Appetite is important in patient with heart failure for maintaining food intake and a healthy weight. There is a lack of knowledge on the significance of problems with decreased appetite and on which factors that might contribute to decreased appetite and whether decreased appetite has an influence on patients’ health status.

In her studies she found that 38% of patients with heart failure (despite that the majority had mild to moderate heart failure symptoms i.e., NYHA class II) experienced an appetite level that put them at risk of weight loss.

In one of her studies, which she presented last year on the #AHA17 congress, she found that patients with heart failure who were more physically active have better appetites compared to patients who are less physically active.

physical activity and appetite in patients poster

Other factors that she found which are associated with loss of appetite were older age, symptoms of depression, sleep problems, impaired cognitive function and suboptimal medical treatment and should be recognized in all these patients. Loss of appetite needs attention as it is likely to lead to worsened nutrition, but also because she found that loss of appetite is associated with lower health status.

So what should we do with this new information?

Christina suggest that the assessment of appetite should be incorporated as routine in nutritional care. For instance, an instrument that could be used is CNAQ: Council on Nutrition Appetite Questionnaire. The results could be used as a basis for communicating appetite with patients and their family members. Furthermore, she found a lot of factors associated with appetite, health care professionals should pay attention to patients who are older, as well as patients with depressive symptoms, sleeping problems, cognitive decline, low physical activity and patients with suboptimal treatment.

Leonie Klompstra Headshot

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


Sexual Counselling In Rehabilitation For Cardiac Patients

In most rehabilitation programs, sexual counseling is not given to cardiac patients. This while the cardiac disease could influence the sex life of patients. There are physiological and pharmacological causes that can influence sex life of patients. Also, the disease can increase fear, anxiety & depression and relationships could change. If the disease negatively influences a patients’ sex life, this could impact their quality of life and well-being. Patients could choose to skip medication in the case sexual problems occur, order online PDE5 inhibitors, or experience side effects of other treatments than their cardiac treatment (e.g. herbal treatment). A changing sex life will not only impact a patient’s life, but also their partner’s, who report sexual concerns as a significant stressor. We have to realize that sexual satisfaction and communication satisfaction is associate with marital satisfaction. The sex life of patients with heart failure deteriorate in 25% of the patients, where half of these patients consider this as a serious problem.

Two-third of patients report that sex was never discussed in their cardiac care, where about half of the patients would like to have to opportunity, or more opportunity to discuss sex with a health professional.

The question now is not if, but how we should provide sexual counselling in cardiac care. It is important to find the underlying reasons why the disease influence the sex life of the patients, assess the patient’s expectation and unravel misconceptions.

Patients at two months post myocardial infarction preferred written material (69%), individual discussion (57%), video tape for home viewing (55%), consultation telephone line (23%) or group discussions for sexual counselling (19%). There are a lot of brochures with information of sex and cardiac disease. For patients with heart failure, there is a nice web-site where they could find information on sex and heart failure:

Sex and heart failure - excerpt ffrom heartfailurematters.org
Excerpt from heartfailurematters.org

There are also questionnaires that could be used in practice, such as the multidimensional sexual-concept inventory or the sexual adjustment subscale. But you could also just ask. An example how you could ask is:
      – Some people with cardiac disease have problems with resuming sex after diagnose. How is this for you?
      – Some people report sexual problems as a result of prescribing medication. If you feel this is the case for you, please feel free to talk to me about this.

To read and hear more about this subject, please watch the web seminar on sexual counselling of cardiac patients: theory and practice by Dr. Molly Byrne and professor Tiny Jaarsma.


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


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.


Are RCTs The Best Research Method In Non-blinded Controlled Clinical Trials?

In research, randomized controlled trials (RCTs) are seen as the best method for looking at interventions effect. In RCTs, the preference of patients (or their health care providers) for a treatment is not taken into account. This could lead to those patients refusing to be randomized and will never even enter the trial. Because these patients will not enter the trial, the generalization of RCTs could be a problem. Read more about the external validity of RCT.
Another problem that can occur in RCTs is low adherence for treatment in patients who do not receive the preferred treatment after randomization. On the other hand, patients who get the preferred treatment may adhere to this treatment better than average. In the last case, it could be that there is treatment effect which results from a patient’s preference and not from therapeutic efficacy.
One example of a study including the preferences of patients is on home-based or hospital based rehabilitation in cardiac patients. Next to the traditional RCT design used in this study, they also included patients and let them choose their preferred intervention. In this study, it was shown that the patients in who choose their intervention, had a higher adherence to their rehabilitation than patients who were randomized.
A method that takes the preferences of patients into account is preference randomized control trial and maybe more suitable to non-blinded controlled clinical trials. In this design, patients who have a strong preference will get the treatment they prefer and patients who do not have a strong preference will be randomized. In a trial with two interventions (A & B) you will end up with four groups:
Group 1. Randomized to A
Group 2. Prefer A
Group 3. Randomized to B
Group 4. Prefer B

What are your opinions on taking preference of patients into account when designing a study?

Leonie Klompstra Headshot

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


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.


Nursing Poster Sessions

Next to the great talks, there are also great posters at the American Heart Association. Some of these posters I would like to highlight in this blog.
Muna Hammash presented that interventions such as psychoeducational before and after ICD insertion may improve perceived control and, in turn, quality of life.

Muna Hammash  
Dr. Misook Chung had an interesting poster on diet quality in patients with heart failure. She found that diet quality was similar in patients with heart failure regardless of their adherence to sodium restriction diet.

Dr. Missook Chung in front of her poster at Scientific Sessions

Missook Chung poster

Solim Lee presented why patients with heart failure don’t respond to early symptoms.

Solim Lee in front of her poster at Scientific Sessions

Solim Lee conclusion

Dr. Jennifer Miller showed that living in a socio economically austere area imparts greater risk for death or hospitalization for ICD recipients.

Dr. Jennifer Miller in front of he rposter at Scientific Sessions

Hiroko Ishida presented a poster on dyad research. She found that health literacy of patients with heart failure and their caregivers was independently associated with caregivers burden. 

Hiroko Ishida in front of her poster at Scientific Sessions

Umama Gorsi had an abstract accepted about cardiac rehabilitation. She found that early outpatient cardiac rehabilitation is associated with reduced total mortality rates after myectomy for treatment of hypertrophic cardiomyopathy.

Umama Gorsi Poster

There were great presentation on self-care in patients with heart failure. Foster Osei Baah found in his research that self-care confidence moderates the relationship between marginalization and self-care maintenance in patients with heart failure.

Foster Osei Baah in front of his poster at Scientific Sessions

In another research on self-care, Miyuki Tsuchihashi-Makeya found that health literacy was associated with poor self-care. Furthermore, she found that perceived control mediated the association between health literacy and self-care behaviors in patients with heart failure.

Miyuki Tsuchihashi-Makeya Poster

I would like to thank all the researchers in this blog for their enthusiasm to discuss their work with me!

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


Early Career Blog

Being at the American Heart Association makes me realize (again) that I have one of the greatest jobs in the world. There are so many inspiring people and talks and I am happy that I can share some of my experience in the Early Career blogging program.

Leonie in front of heart and torch at Scientific Sessions

The first day of the American Heart was all about the early career scientists. Speakers gave great advice on how to find a mentor, the transition to how to succeed in grants, the transition to faculty, how to respond to a rejection letter and how to get your name out there. Tips that were given you can read on the blogs by Bailey DeBarmore and Fawaz Abdulaziz M Alenezi. The second day of the American Heart were for me the day of awards. In this blog, I would like to acknowledge researchers who achieved awards for mentoring, research achievements or are finalists.
Cardiovascular Stroke and Nursing Counsel (CVSN) Kathleen Dracup award
This award highlights the importance of early-career mentoring in cardiovascular and stroke nursing to the CVSN. This year the award was given to Dr. Susan J. Pressler. I would like to congratulate her and thank her for being an example with her gifts and generosity in mentoring Early Career scientists.

Dracup Distinguished Lecture Program

Kathleen A. Lembright Award
This award recognizes and encourages excellence in cardiovascular research by established nurse scientists. This year winner is Dr. Shirley Moore. She gave a great talk about the responsibility of researchers to report on null trials.

Dr. Shirley Moore speaking at the Lembright Award

null trials slide

Martha N. Hill New investigator Award
This award recognizes the outstanding contributions of investigators in understanding, preventing, and treating cardiovascular diseases.

I would like to congratulate the finalists this year: Dr. Margo B Minissian and Dr. Billy Canceres.

Dr. Margo B Minissian conducted research in the association of spontaneous preterm delivery and postpartum vascular function.

Dr. Billy Canceres conducts research in high cardiovascular disease risk in sexual minority women.

Three people at Scientific Sessions
Congratulations to your all!

Leonie Klompstra Headshot

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