This is another blog post in our series Reflections Careum Congress 2014 and related to Careum’s interest in co-creating health. Nicolaj Holm Faber, Danish health care expert and Stanford T-Trainer shares his thoughts on rolling out a self-care intervention in Denmark. He provides insights on how self-management support has been embedded in the Danish health care system and how it has to be tailored to address the needs of specific groups. Are expert patients the answer?
Self-management support in a nutshell
Self-management support is essential for innovative and patient-centred chronic illness care. In the variety of self-management programs, Stanford’s Chronic Disease Self-Management Program (CDSMP) stands out with a huge evidence base and has been disseminated globally. Denmark is one of the European countries with vast experience with the CDSMP and has developed additional programs to support people with chronic conditions and their significant others.
The CDSMP is a generic self-management program, which has been developed at Stanford University. It is delivered as a course within six weeks and in sessions that last about 2,5 hours. The course leaders are voluntary patients with great experience in self-management. Focus is the management of every day life with a long term condition. The aim of the program is to increase the self-efficacy of the participants.
In 2006, the Danish infrastructure changed. We went from having around 300 to 98 municipalities. These municipalities had new responsibilities in terms of disease prevention, health promotion, rehabilitation after sickness leave and, in general, supporting people with long-term conditions, such as arthritis, diabetes, different kinds of chronic pain or depression/anxiety.
At the same time, the new municipalities had to finance 20% of hospitals costs related to re-admissions of patients with chronic conditions. This created a financial impetus and motivated the municipalities to helping their citizens in dealing with challenges of long term conditions in order to reduce the readmissions rate. Besides, this can be considered a win-win situation since reduced health care costs would be a result of increased quality of life for those living with chronic conditions.
One of the main challenges was that people have all kinds of different diagnoses. The crucial question was: How to support individuals, a community or even a big municipality with up to 60.000 citizens with a program that include something for everybody.
A generic intervention
At Stanford University, School of medicine, Dr. Kate Lorig experienced similar challenges but from a different angle. Since the 1970ties she had worked on an arthritis self-management program. But when she was asking participants about their challenges with and benefits of the program, they reported back almost anything but challenges and benefits specifically linked to arthritis. This scenario led to the idea that living with long term conditions gives you a wide range of challenges and possible benefits, no matter what specific health care problem an individual is experiencing. And the best place to solve those common problems is in a group with people with similar challenges and experiences.
To cut a long story short: Kate Lorig developed a generic self-management program (the CDSMP), which was introduced in a variety of settings in different countries to various populations. The important thing to understand is that the CDSMP is NOT treatment but a potentially great supplement to treatment enabling individuals to regain control of their own life despite having a long-term conditions. The CDSMP’s main benefits, discovered in numerous research studies, is reduction of physical limitations, experience of a better self-reported health, reduction in symptoms of depression and anxiety and an increase in self-efficacy.
Rolling-out the CDSMP
Back to Denmark. Here, the National board of health and the Danish Arthritis association decided to dessiminate the CDSMP in the municipalities. The hypothesis was that next to the more disease-specific activities happening in the municipalities, a generic program like the CDSMP for all kinds of long term conditions would potentially be beneficial for the citizens.
The Danish Committee for Health Education, a private non-profit organisation closely tied to the National board of health, appeared to be the ideal organisation to host the national ‘office’ for CDSMP. The committee translated the materials for the first version of the CDSMP, which was piloted in 2003-2005. Since 2006, up to seven employees are working on dissemination and quality assurance of the Stanford programs.
What was our strategy? The idea was to approach the municipalities with both a top-to-bottom as well as a bottom-up approach. This means that the committee at one level secures the support at policy level. And we offer support to each municipality in how to run the CDSMP in a local community setting. From 2006-2008, the program was disseminated in 82 out of the 98 municipalities. During that period, all services from the Danish Committee for Health Education were financed by the non-profit foundation TrygFonden.
Targeting chronic pain
All CDSMP participants fill out a questionnaire after course participation. From this data we could see that close to 50% had some kind of chronic pain condition. Therefore, in cooperation with the National Board of Health, the Danish Committee for Health Education decided to disseminate a derived version of the CDSMP, the Chronic Pain Self-Management Program (CPSMP). It was financed as an implementation and effect evaluation project. From 2010-2012, the program was disseminated to 41 municipalities, a randomized controlled trial was conducted (n=500) and its results are comparable to international studies.
CPSMP started in Denmark at the right strategic moment. The municipalities had little to offer for those citizens who were living with challenges of chronic pain. Today, the Danish CPSMP version is widely disseminated. In many municipalities, the program is also part of local «return to work» strategies since 80% of those Danish citizens who are the farest away from employment have chronic pain.
Mental health – unemployment
Recent findings from the USA suggest that the CDSMP may be an effective resource for people with serious mental illness. In the UK, the CDSMP has been altered into a mental health workshop called «New Beginnings». As the Danish study on the CPSMP had discovered that 24% of its participants had symptoms of anxiety and 40% had symptoms of depression we had a substantial reason for addressing mental health, too. Since 2012, we have translated as well as disseminated the British «New Beginnings» program in 46 Danish municipalities and a randomized controlled trial (RCT) was conducted with 900 study participants.
In Denmark, we see a corelation between unemployment and long term disease. However, the two systems, health and employment, are not used to working together. So, in cooporation with Stanford Patient Education Centre, the Danish Committee has altered the CPSMP in order to focus the workshop on managing health and employment. In this workshop, called «Learn to tackle employment and disease», all activities are linked to the challenges of working, even though disease limits your functionality.
We have planned a RCT (n=1000) to investigate the effect of the workshop as a supplement to existing activities in local job centres. Simultaneously, a new Danish legislation states that if your are on a long-term sick leave (more than 6 weeks) your municipality is obliged to offer you self-management support, e.g. the CDSMP.
Challenges in dissemination
What are the main challenges of disseminating this new program?
- First of all, the above mentioned lack of co-oporation between the health care system and the (un-)employment system.
- Secondly, the challenging recruitment of participants for the program. We are doing a lot of information meetings to help the municipalities in building a common platform for delivering workshops. And we are trying to communicate the benefits of the workshops in the municipalities to support the recruitment. We are also approaching all general practitioners so they might encourage people to attend the workshops.
So where is the problem? Recruiting participants via job centers might be an explanation. Maybe unemployed citizens have to deal with two different challenges at a time. They are facing financial insecurity because of their lost job. Concurrently, they have to deal with the uncertainty of their chronic condition. They might not be ready yet to deal with both health and employment at the same time. And maybe the very strict nature of the Danish employment legislations are putting pressure on individuals. They have to prove that they are too sick to work instead of trying to find new ways of employment while living with a long term condition.
We now experience the benefits of all the studies, which were done on Stanford self-management programs in the Danish health care system. We have successfully transferred international findings to Denmark. But there is still a lot of work to be done. A key challenge was and still is to make these successful and effective programs more accessible for hard-to-reach groups and those citizens most in need of self-management support.
What are your thoughts and experiences with recruitment for self-management support? How can interventions be successfully implemented in health systems to address the needs of citizens with chronic conditions? How can the gap between different systems (health versus employment sector) be bridged?