Congratulations Dr Hjelmfors

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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.
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.
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.

Posted by Leonie Klompstra on May 24, 2018 11:09 AM America/Chicago

Self-care day in Rome 2018

 

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Tiny Jaarsma and Anna Strömberg went to Rome on the 14 and 15 May to share knowledge and experience on using the Middle Range Theory of Self-care in Chronic Illness during a conference organized by the Nursing center of excellence in Rome. A lot of researchers and students from Tor Vergata University in Rome presented their impressive work using this theory in patients with cardiac disease but also other chronic disease such as COPD and diabetes. It seems that the theory is very valuable to structure research and use in patient care and instrument development.


International guests at Linköping University to celebrate the HF-Wii study

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15 and 16 of April 2018 international researchers had a 2-day meeting at LiU’s campus Norrköping.

WWIITiny Jaarsma, Anna Strömberg and Leonie Klompstra welcoming all.

After an intense collaboration of 5 years with colleagues from 10 centers that included patients in the HF-Wii study we organized 2 days of presentations, discussions and practical instruction. Our research colleagues from Sweden (Linköping, Norrköping, Nyköping, Jönköping and Stockholm) and colleagues from Italy, Israel, Germany, Netherlands and USA collected data from in total 605 patients in 10 centers.

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Scientific discussions included intention to treat and per protocol analysis and optimal dissemination.  We also presented first outcomes (positive results of playing an exergames), experiences of patients and planned analysis and sub-studies.

A visit to the local patient organization to learn on implementation of the results completed 2 inspiring days.

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Part of the international research group at ’Föreningen HjärtLung Norrköping.

To read more about the study please visit our website: www.hf-wii.com or follow us on twitter @HFWii

 

 

 

 

Workshop on Rehabilitation and Long-Term Management of Heart Failure Patients

Dear all,

The 21st – 22nd of March I was invited to be speaker for the Heart Failure Association Training Workshop on Rehabilitation and Long-Term Management of Heart Failure Patients in Pisa Italy, a course of the European Society of Cardiology. This was such an honour, especially because I attended this course myself as a PhD student four years ago.

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The first day of the workshop we learned a lot about the guidelines for rehabilitation and prevention and there were presentations on Acute setting/post-acute setting – first steps in initializing cardiac rehabilitation. Additionally, there were two live sessions from the cardiac clinic in the hospital of Pisa (Fondazione Toscana Gabriele Monasterio per la Ricerca Medica e di Sanità Pubblica). One live demonstration on early mobilization and physical reconditioning in acute setting and the second on cardiopulmonary exercise testing.

In the evening we visit the Acient Camposanto in Piazza dei Miracoli and had dinner with all the participants and speakers in the course. A perfect ending of an excellent first day.

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The second day the presentations were on phase two in rehabilitation, emerging scenarios in heart failure: case presentations and multidisciplinary approach in rehabilitation. I gave a case presentation on tele-rehabilitation and Wii gaming and a presentation on how to deal with vocational, sex and other crucial items in rehabilitation. On sexual counseling in rehabilitation I wrote a blog for the early career blogging of the American Heart Association. There is a very nice online web-seminar of sexual counseling in cardiac patients on the website of the European Society of Cardiology, if you would like to learn more about this subject.

 

Leonie Klompstra

 

Post-doc collaboration

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Ghassan Mourad has a collaboration with the research group “Emergency, Cardiovascular and Critical Care Research (ECCCR) Group” led by Professor Tom Quinn at Kingston and St George’s Joint Faculty of Health, Social Care and Education in London. The ECCCR group was launched at the 28th February 2018 and Ghassan Mourad was present at the launch to present his RCT “Patient and societal benefits of guided internet-delivered cognitive behaviour therapy for patients with non-cardiac chest pain”.

The 5th national Swedish conference in Palliative Care

palliativ konferensThe 5th national Swedish conference in Palliative Care was held in Stockholm 21-22 March 2018. The conference is of interest for all health care professionals working in palliative care, regardless of context of care and disease. The theme of the conference this year was ”the palliative approach”.

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Two Cesar members presented at the conference. Dr Maria Liljeroos had an oral presentation entitled To live with a person with heart failure, the time before and after the death.

PhD student Lisa Hjelmfors had a poster presentation with the title: Using co-design to poster LHdevelop an intervention to improve communication about prognosis and end-of-life issues in heart failure care. The poster described how co-design was used as a method to develop communication tools, and invited the users: patients, family members and health care professionals to be constructive participants in both the design process and in the testing of the intervention. A Question Prompt List for patients and family members and a communication course for health care professionals were developed and tested, and the communication tools can be valuable in improving communication in HF care about prognosis and end-of-life care.

 

The next national Swedish Palliative Care conference will be held in 2020.

EHRA Conference 2018

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The first ‘new style’ annual conference of the European Heart Rhythm Association (EHRA) took place 18 – 20 March 2018 in Barcelona – Spain. Previously the conference was called Europace and was organised in collaboration with Cardiostim. The EHRA conference focusses on electrophysiology and the management of cardiac arrhythmias and the relationship with other cardiovascular conditions and risk factors. The conference welcomed approximately 6000 healthcare professionals from 100 countries, and this first edition of the EHRA conference was a great success.

EHRA 2019The three days were filled with interesting sessions with a diversity of topics. Oral anticoagulation is an important aspect in the management of cardiac arrhythmias to prevent thromboembolic complications such as a stroke. In a packed room, Professor Heidbuchel (Vice-President EHRA) presented the 2018 EHRA Practical Guide for the use of NOACs in patients with atrial fibrillation. This is an important document to guide health care professionals in e.g. decision making, management and follow-up in anticoagulation management. I very much encourage you to take look at the document (https://www.ncbi.nlm.nih.gov/pubmed/29562325).

OverviewAnother important topic is cognitive impairment in patients with cardiac arrhythmias. Given that the literature on this topic is scarce and the problem is underestimated and under-recognized in practice, it was very interesting to see the presentation on the EHRA expert consensus document on arrhythmias and cognitive impairment. The document highlights methods of assessments, the role for the health care professionals, as well as the role for imaging. There is still uncertainty as well as limited evidence in this area, but this guide will contribute to awareness and recognition of cognitive impairment in cardiac arrhythmias. For further reading please see the full consensus document: https://www.ncbi.nlm.nih.gov/pubmed/29562326.

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At the conference I presented a novel integrated pathway for screening of sleep apnea in patients with atrial fibrillation. We developed this pathway in collaboration with colleagues from Belgium and Australia, and we propose this pathway to increase awareness for (the screening of) sleep apnea which will contribute to improved outcomes in patients with atrial fibrillation (see figure).

In 2019 the EHRA conference will be held 17-19 March in Lisbon – Portugal.

Jeroen Hendriks

March 2018