Joint efforts of patients and researchers made a difference
On 3 November 2017, 240 hopeful patients and their family members met an equally hopeful research group at Rigshospitalet in Copenhagen to share the results from the CopenHeart project. This closed the circle for the 5-year project, which ended in the same spirit as it had begun: with the ambition of making a difference for people with complex heart diseases in a respectful and credible way.
Ann-Dorthe Zwisler led the project together with Selina Kikkenborg Berg. A big wish came true that day at Rigshospitalet:
“This is the first time in Denmark that researchers invited patients with heart disease to an event like this. We were all very happy and grateful that so many people attended. That day, I really felt like we had succeeded. It was great that so many patients and their family members participated in concluding the project. It was also nice to see a research group that was grateful to the patients and presented the results with relief and pride, even though some of the results were disappointing.
CopenHeart has delivered important results that highlight the importance of cardiac rehabilitation in complex heart diseases in an intersectoral perspective. Before the CopenHeart project, little research had been conducted in this field, but everyone present on that day has helped to compile great knowledge and put fresh and deep research footprints into what had been a relatively uninvestigated research field.
Researchers from Denmark and elsewhere have followed the project
The project collaborated with leading international research partners from the outset to ensure that the scientific results are of the highest possible quality. CopenHeart is the first project to succeed in collaborating across a highly specialized national hospital, local hospitals and municipalities in two administrative regions on a large scale, and this has generated interest internationally. The project has had an international Expert Advisory Group throughout, comprising leading researchers from Denmark and various other countries. The members of the Expert Advisory Group have regularly assessed and advised the research group and have been important in ensuring that the project’s results are broadly communicated. The international support and interest has meant that the results of the project have met international standards, and the research group has published more than 50 articles in various scientific journals.
A joint effort
Everyone participating in the project has been part of a joint effort. The project has not only comprised collaboration across municipalities and hospitals but also interdisciplinary collaboration. The research group has included physiotherapists, nurses, physicians and health economists, and the municipalities and hospitals had similar interdisciplinary approaches. Further, the patients have participated with their assessments and especially with their time and effort.
The researchers had difficulty in recruiting patients for the project. It was difficult both internal to the system but also because participating was very demanding for patients. Ann-Dorthe Zwisler elaborates:
“We had hoped to recruit 210 patients for each project, but unfortunately we did not reach 210 patients in all the trials, since recruiting patients was more difficult than we had expected.”
A surprising finding
The researchers made several significant findings during the project. Some of the patients were in very poor physical and mental condition, and surprisingly many more than the researchers knew about were readmitted to a hospital in the first few months after discharge. Ann-Dorthe Zwisler thinks that the facts that the condition of so many patients declines so severely and that they have so many challenges right after treatment need to be taken seriously:
“We must become better at ensuring that the patients can actually return to as normal a life as possible. We are extremely good at treatment! This must naturally be continued by all means, but it is not enough! We have to view patients as whole human beings who need to return to living a normal life. Some of the patients participating in the CopenHeart trials suffered. They experience existential challenges from the aftermath of complex heart disease. We would normally think that we would not have to face these existential challenges until shortly before death – but no, this happens when we get seriously ill. Our perceptions of ourselves change when we get seriously ill: can I manage my family? Can I still make love with my partner? Can I continue to do what I want? In the CopenHeart trials, we noted that the patients focus on these challenges, and we have not been aware enough of this until now.”
New research should increasingly incorporate patients’ knowledge
If Ann-Dorthe Zwisler succeeds at getting more money for further research, she will try to explore how to increasingly individualize rehabilitation and aftercare.
“We need to use the patient’s experiences and responses in a much more integrated way and let the patients who say they can cope without help do this. Then we can focus on helping those who really need help. I would also integrate the pharmaceutical aspects into the research. In the CopenHeart project, we focused on exercise training and discussions with nurses, but I think that getting rehabilitation to work as integrated and supportive care requires making it an integral part of the overall treatment. As a physician, I do not think we can merely make a diagnosis and then treat the patients. We have to be there throughout the process and support patients in returning to normal life.”
The five randomized trials gathered extensive data, such as on patients’ quality of life, sleep and physical condition. Some of these parameters have not yet been analysed, and the CopenHeart research group hopes to be able to investigate these data to eventually provide comprehensive recommendations for rehabilitation to both clinicians and patients.
Ann-Dorthe Zwisler works with both rehabilitation and palliative care as the Head of REPHA, the Danish Knowledge Centre for Rehabilitation and Palliative Care.
CopenHeart was a multidisciplinary research project that investigated the effects and organization of rehabilitation for patients with complex heart disease. The project included five randomized controlled trials, organizational analysis, socioeconomic analysis and qualitative interview studies.
The five randomized controlled trials examined how rehabilitation affects:
· patients with atrial fibrillation treated with radiofrequency ablation;
· patients with heart valve disease who have had a heart valve replacement;
· patients with endocarditis treated with antibiotics and possibly heart valve surgery;
· men with an implantable cardioverter defibrillator and/or ischaemic heart disease and sexual dysfunction; and
· patients with an implantable cardioverter defibrillator.
The social science analysis examined:
· the economic effects of rehabilitation;
· monitoring, quality of life and the optimal places for exercise training.
Results from CopenHeart
· Patients experience physical and mental challenges after discharge.
· Surprisingly many patients were readmitted to a hospital in the aftermath of treatment.
· There is very little knowledge about rehabilitation in these specific patient groups.
· The CopenHeart model improves the physical capacity of patients.
· Many participants recovered mentally after 6 months, independent of the initiatives.
· Sexual function improved after participating in the focused intervention of CopenHeart.
· Patients can exercise on their own following guidance from a physiotherapist.
· Patients experience rehabilitation efforts as meaningful.
· Rehabilitation can be offered at no additional cost.
The Danish Council for Strategic Research supported CopenHeart with a 5-year grant from 2011 to 2017. The first phase of the project was completed in 2017. Funds are being sought to fully explore the unique data collected through the project and to investigate the long-term effects of rehabilitation on readmission to a hospital.
Publications and other outcomes from CopenHeart
The CopenHeart research group has had the following dissemination outcomes:
· published 68 peer-reviewed articles in various scientific journals;
· published 6 PhD dissertations;
· published 6 theses;
· given 43 lectures;
· created 20 poster presentations; and
· held 13 CopenHeart meetings and events.
The CopenHeart research group (+deres profilbilleder)
Ann-Dorthe Zwisler, Clinical Professor, Chief Physician, Head of Centre
Ann-Dorthe Zwisler, MD, PhD, is a Clinical Professor of Rehabilitation and Palliative Care, specialist physician in cardiology and Head of REHPA, the Danish Knowledge Centre for Rehabilitation and Palliative Care. Ann-Dorthe Zwisler was employed as a physician in a training position in cardiology at Rigshospitalet and project leader when CopenHeart started in 2010.
Selina Kikkenborg Berg, nurse, Adjunct Professor and Senior Researcher
Selina Kikkenborg Berg is Adjunct Professor of Cardiac Nursing at the University of Southern Denmark and Senior Researcher at the Heart Centre at Rigshospitalet. In addition, Selina Kikkenborg Berg is an Associate Professor at the University of Copenhagen. Selina Kikkenborg was employed as a PostDoc and project leader when the CopenHeart strated in 2010.
Signe Stelling Risom, nurse, PhD, postdoctoral fellow
Signe Stelling Risom divides her time between the Heart Centre, Rigshospitalet and the Department of Nursing, Metropol University College. She focuses on patients with heart disease, teaches and conducts research. Signe Stelling Risom has worked on long-term follow-up of the participants in CopenHeart. Signe Stelling Risom and her research colleagues want to supplement these data with data from Denmark’s registries, such as information on rehospitalization and medicine use. Signe Stelling Risom was affiliated with CopenHeart as a nurse and PhD student in 2011.
Kirstine Lærum Sibilitz, MD, PhD
Kirstine Lærum Sibilitz is employed in a main training position in cardiology, first at Hvidovre Hospital and then moving to Rigshospitalet. Kirstine Lærum Sibilitz is clinically interested in heart valve disease and treatment for patients who have undergone heart valve surgery and the aftercare of patients with complex heart disease. Her research focuses on the long-term effects of rehabilitation for patients who have undergone heart valve surgery with data from the CopenHeart trial as well as several research projects on aftercare and rehabilitation for patients with ischaemic heart disease. Kirstine Lærum Sibilitz joined CopenHeart as a physician and PhD student in 2011.
Trine Bernholdt Rasmussen, nurse, PhD, postdoctoral fellow
Trine Bernholdt Rasmussen is employed at the Department of Cardiology, Herlev and Gentofte Hospital as a postdoctoral fellow. Trine’s research mainly focuses on patients with infectious endocarditis and patients with ischaemic heart disease, specifically focusing on the aftermath of treatment and the patients’ perspectives. She is processing the results from CopenHeart IE in relation to intersectoral patient care and rehabilitation participation after percutaneous coronary intervention. Trine Bernholdt Rasmussen was affiliated with CopenHeart as a PhD student in 2011 in a joint position between Rigshospitalet and Gentofte Hospital.
Pernille Palm Johansen, specialist clinical nurse, PhD
Pernille Palm Johansen works at Rigshospitalet in the Heart Centre, where she is employed as a specialist clinical nurse with special focus on patients with ischaemic heart disease as well as research on acute cardiology. In addition, her research continues on patients with heart disease who have sexual problems and disseminating the results of several subprojects from her PhD project. Further, the knowledge gathered is being disseminated to partners in the hospitals responsible for rehabilitation. Pernille Palm Johansen was affiliated with CopenHeart as a PhD student in 2013.
Tina Birgitte Hansen, nurse, PhD, postdoctoral fellow