Fact sheet: Managing chronic disease

Chronic illnesses are usually lifelong conditions. This does not, however, necessarily mean that the lives of those who have a chronic illness have to be dominated by it. Disease management programmes are intended to make it easier for people to get on top of their chronic illness and have a good quality of life. "Disease management" is the concept of systematically treating and managing a condition. It should improve the therapy of chronically ill people in the long term and help them to understand their illness better. This may mean dealing with the treatment and demands of their illness in a well-informed way and finding out how to live as good a life as possible with the illness.

What is a chronic disease programme?

Chronic disease programmes or disease management programmes (DMPs) offer comprehensive health care services for people with chronic illnesses. In Germany, for example, they were introduced to provide a coordinated and systematic approach to treatment and care. People in Germany with certain chronic illnesses, for example, have the option of taking part in disease management programmes offered by their state health insurance fund. There are currently such DMPs for type 1 and 2 diabetes, asthma, chronic obstructive pulmonary disease (COPD), breast cancer and coronary heart disease. People who have several of these illnesses are entitled to participate in the DMPs for each illness. There are plans to further develop the existing health care services for people who have heart failure (cardiac insufficiency) or are extremely overweight (obese).

The programmes which are offered by the statutory health insurance funds consist of, among other things, regular doctor's appointments involving medical tests and consultations. Learning more is also a part of the programme, for example, by attending self-management education courses. Doctors who participate in the programmes have to fulfil certain requirements and follow defined quality standards.

The main aim of DMPs is to reduce the symptoms associated with the illness and delay or stop it from getting worse. This includes avoiding the development of complications or accompanying diseases as far as possible. In addition, this structured approach to treatment should enable patients to play an active role in managing their illness themselves, and to integrate their treatment into everyday life in a way which suits them best. Together, these factors should improve the participants' overall quality of life.

A further aim of DMPs is to improve cooperation between the various relevant doctors and institutions that provide care, such as general (family) doctors, specialists, clinics and rehabilitation centres. This should ensure that the individual treatment steps are well coordinated and, for example, help avoid situations in which procedures are unnecessarily carried out twice.

Who offers disease management programmes?

In Germany, DMPs are offered by statutory health insurance funds. For each of their members who participate in an accredited DMP, the individual statutory health insurances receive money via a compensation scheme. This scheme makes sure that the costs that arise through DMPs are not too unevenly distributed among the different insurers. Many health insurance funds encourage their members who are chronically ill to participate in a DMP by providing them with detailed information about their treatment programmes. Some offer additional services, such as telephone hotlines or reimbursement for medical consultation co-payments.

In Germany, if you have one of the chronic illnesses listed above and are interested in taking part in a DMP, it is best to contact your health insurance fund directly. They will be able to give you detailed information and tell you which doctors in your area are registered in the DMP for your illness. For example, if you have diabetes your main contact doctor may be a general practitioner, and if you have breast cancer it may be a gynaecologist. In any case, your "coordinating" medical practice is responsible for ensuring that the different parts of your therapy all come together. The attending doctors will document the progress of your treatment, give you referrals to (other) specialists or clinics if necessary and are the main contact people in all matters related to your treatment. In other parts of the world the same steps apply: check with your insurer or doctor to find out if there are options like this for your condition.

What is a "structured" programme?

The treatment strategies in the DMPs offered by statutory health insurances are based on certain specifications. These are developed and defined on a national level by representatives of the health care system and a group of experts. They are meant to serve as guidelines for the treatment of individual patients. The participating medical care providers, including doctors, clinics, rehabilitation centres, nurses and education organisers, are obliged to fulfil certain quality requirements and follow the defined treatment plans. Patients who enrol in a DMP commit to actively managing their treatment themselves - for example, by arranging regular appointments with their doctor (every three to six months).

The exact treatment approach is determined by the doctor together with the patient. After in-depth consultations, medical tests and a clear diagnosis of the chronic illness, the doctor puts together a tailor-made treatment plan based on the specifications of the DMP. This includes medications and other treatments, education courses and regular check-ups, some of which may be carried out by other doctors or clinics. For example, the DMP for diabetes involves having regular eye tests in order to detect and treat possible eye damage early on.

The individual therapy steps, as well as the outcomes of tests and treatment, are also documented according to defined specifications. This should enable all those involved in the therapy to understand why certain measures were taken and certain decisions were made, and to take this information into consideration when planning further treatment.

Some statutory health insurances provide detailed brochures with information, some offer a telephone hotline for additional support, others have text message or e-mail services to remind participants of their upcoming medical appointments.

How could I benefit from a DMP?

Chronic illnesses are complex conditions, often requiring long-term regular treatment which should be tailored to suit the individual patient wherever possible. If you have frequent flare-ups or severe episodes of your illness, only going to your doctor whenever things get worse possibly won't be enough in the long term. Participating in chronic disease management may improve the success of your treatment. As long as the programme and the way it is carried out fulfil the quality requirements, it could offer you the following advantages:

• The doctors who treat you would be specialised in your illness. All of the involved doctors and nurses, for both inpatient and outpatient treatment, should coordinate care with each other and with you.
• Your doctor would be better informed about the history of your illness and treatment than is possible during normal consultations, and would therefore be able to give you more personalised attention and advice during the arranged appointments.
• Special education courses could make it easier for you to actively take part in making well-informed decisions about your treatment.

Many people also find a structured treatment plan helpful because it reduces some of the time and effort involved in managing their illness. For example, they no longer have to look for suitable qualified specialists or clinics themselves if they do not want to.

How effective are chronic disease programmes?

The treatment offered in a chronic disease programme should ideally be evidence-based. In other words, treatment decisions should be based on the best available medical knowledge. The treatment that a person receives should be well documented and coordinated as well as quality-assured. You can read more about evidence-based medicine in our article.

Scientific studies suggest that the effects of structured treatment plans offered in different countries vary depending on the illness, as well as what the programme involves and how it is carried out. For example, the quality of the education courses plays an important role. One of the possible reasons for improved health outcomes in disease management programmes seems to be that they had improved patients' adherence. In other words, if the participants followed their medical regimen more closely than people who did not take part in a programme. The success of chronic disease management may therefore also depend on how committed and active the participants are. Further research is needed in order to get a clear picture of the long-term benefits of structured treatment programmes. There are plans to compare and evaluate the DMPs currently offered in Germany in the near future. Although the programmes all follow the same general standard specifications, they are quite different to each other in some ways.

Are there DMPs for people with other chronic illnesses?

If there is no DMP for your chronic illness, it does not mean that you cannot have a structured treatment plan. A doctor's practice that works in close cooperation with other relevant medical doctors and institutions could also help you to coordinate your treatment and manage your disease. If you and your doctor develop a personal treatment plan that suits you, as well as arranging and attending regular appointments, you will already have the fundamental elements of good disease management. Last, but not least: reliable, comprehensive information can help you to understand your illness better and learn how best to live with it.

© IQWiG (Institute for Quality and Efficiency in Health Care)