Daphne Jansen: How can we improve care for people with multiple chronic conditions?

daphne_jansenAlmost everyone knows someone who has a chronic disease. An increasing number of people suffer from two or more chronic diseases (i.e. multimorbidity). Currently, an estimated 50 million people in the EU live with multiple chronic diseases. In people aged over 65 years, multimorbidity can be considered to be the rule rather than the exception. These developments pose a major challenge to healthcare systems, because most current care delivery models are based on a single disease approach. Consequently, a person with multimorbidity will receive information and care from different healthcare providers and perspectives, resulting in a highly fragmented care service. This fragmentation does not only have implications for the quality of care, it also impacts on patients’ quality of life and healthcare costs.

In order to provide sustainable high quality chronic care, it is important to take a holistic approach to chronic illness care. Many countries in Europe are already experimenting with new models of chronic care delivery. Integrated care models seem to have the potential to meet the complex needs of people with multimorbidity, while making efficient use of resources. These models are characterised by patient centered multidisciplinary care, integrating health and social care, using new technologies to support self management and improving collaboration between caregivers.

Being a researcher with interests in the experiences and consequences of living with chronic illness, I was excited to be given the opportunity to join in a major project entitled ICARE4EU, aimed at contributing to the innovation of chronic illness care for European citizens. ICARE4EU is a collaboration between several institutes in Europe and is co-funded by the Health Programme of the European Union. For this project, we describe existing integrated care initiatives addressing multimorbidity that are developed and implemented in 30 European countries and analyse their characteristics. By disseminating our findings about potentially effective and efficient initiatives, we hope to contribute to the adoption of good practices throughout Europe.

During a first plenary meeting with the project partners in March 2013 in Brussels, we discussed the aims and outline in detail and reached constructive agreements about the next steps. In the months that followed, we developed the instruments and protocols by which detailed information on existing integrated care initiatives will be gathered. This information will be collected in the first half of 2014 in cooperation with experts located in the 30 European countries. Data will be compiled to provide an insight into the “state of the art” of integrated care for people with multi-morbidity, along with a description of the objectives, processes, and quality of the care initiatives, as well as the contexts in which they operate. Furthermore, we will identify and analyse good practices in order to provide insight into their features, success in terms of outcomes, costs, and sustainability, as well as management and implementation strategies.

Our (intermediate) findings will be disseminated via multiple media (e.g. reports, fact sheets, the website) and all the project results will be launched at an international symposium in 2016.

We anticipate that our project will facilitate the exchange of knowledge and experiences throughout Europe and that the project insights will help policymakers and stakeholders to plan, decide, and advocate integrated care for people with multiple chronic conditions.

In order to keep you informed about the project developments, several project members will be writing blogs in the upcoming period.

This blog arises from the project Innovating care for people with multiple chronic conditions in Europe (ICARE4EU), which has received funding from the European Union, in the framework of the Health Programme.

Involved partners

Supportive institution
European Observatory on Health Systems and Policies (OBS)

Competing interests: I declare that I have read and understood the BMJ Group policy on declaration of interests and I have no relevant interests to declare.

Daphne L Jansen PhD, is researcher in the department of care needs of the chronically ill and disabled at The Netherlands Institute for Health Services Research (NIVEL), Utrecht, The Netherlands.

  • Mitzi Blennerhassett

    As someone who lives with, and suffers from multimorbidity, I am encouraged to hear about ICARE4EU and interested to learn more. Healthcare professionals work in silos so no-one seems to have an overview of a persons health problems. For example, after aggressive cancer treatments in 1990, I was left with several side effects, not only pain but over-sensitivity to pressure, noise and especially to cold. It still hurts to rest my head on a pillow.

    One consultant thought it might be polymyalgia, but I did not identify with the symptoms on the leaflet he gave me. Another labelled my pain ‘psychosomatic’, so my GP at the time looked no further and wrote that I was a ‘psychosomatic patient’. ‘We don’t think you are making it up – we believe you feel real pain, but you feel more pain than you should do for the amount of osteoarthritis you have’. I changed GP, but a medical label is worse than a conviction – there is no appeal. 23 years later, following a spinal fracture (having waited 10 months for a consultation, and because I had written my own referral letter to add to the information she had) a rheumatologist tested me and found I was sensitive to 16 out of 18 pressure points – so now at last I have a diagnosis of allodynic pain.

    I also have midline lymphoedema due to pelvic radiotherapy but although the PCT eventually allowed a ‘one-off’ course of Manual Lymphatic Drainage at a local hospital in 2004 and it was successful (3L fluid lost) I have not been able to have further similar courses due to financial constraints, and the short courses I have been given have not been so successful, especially since I’ve had to drive a round trip of 90+ miles for them. Now even those have been stopped and only new patients are to be treated.

    Although I am only 5’4″ and look slim compared to larger ladies, the weight of fluid collecting around my abdomen contributes greatly to the pain I feel from cervical spondylosis, spinal osteoarthritis, osteoporosis and the spinal fracture – but no-one seems to take this into consideration when assessing my needs.

    I also have bronchiectasis, so have fatigue from that, as well as from cancer treatments (breast cancer 1997), which makes it especially difficult to maintain a good posture, now even more necessary following the fracture.

    My self management consists of daily Simple Lymphatic Drainage, exercises, breathing exercises, an inhaler, pain relief (inadequate), wearing support garments, using skin emollients and trying to lose weight (which has now crept up to 9st) – as well as combating depression at the thought of being abandoned to an horrific progressive condition caused by cancer treatments.

    It has been difficult for me to take exercise outside, so I used to try to swim once a week, but after the fracture could no longer bear the low temperature of water at Council run swimming pools. I needed a warm hydrotherapy pool, but the local hospital said they no longer had one.

    I heard of an exercise referral scheme which might include use of a warm pool, but my GP knew nothing about it. I sent her details and now go once a week. I pay £4.00 a session with the added cost of petrol as it is 40 minutes’ drive away. Free access to a really warm pool nearer to home would be ideal.

    Home delivered lymphoedema treatment would also be ideal, as prolonged sitting is contra-indicated and undoes the benefit of treatment if I have to drive. But midline lymphoedema treatment probably isn’t even among commissioned conditions.

    I have many health problems and they have an impact on one another, but a trip to the GP is only likely to address only one concern.

    Self-management? I feel I fulfil my part of the ‘bargain’ – but I feel it’s very much a case of NHS DIY.

  • Mike Davis

    I too am someone with multi-morbidities, albeit at the present time, with good control under the care of three hospitals departments and a GP. I am very interested in this project but wonder if pressures of space did not allow the author to explore the way in which the patient perspective would be explored and reported.

  • Daphne Jansen

    Thank you very much for your comments.
    In our next blogs we will pay attention to the way in which the patient perspective will be explored.