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.


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.