Coordinated care for cluster headache

Late diagnosis

According to a survey of cluster headache self-help groups in Germany, on average it takes more than eight years until the correct diagnosis is made. Targeted, adequate diagnoses are often made very late or not at all, and effective therapies are therefore not available or are only initiated after many agonizing years of a pain odyssey, doctor-hopping, doctor-shopping, use of unconventional methods and serious complications. Additionally undiagnosed and mistreated or untreated, cluster headache is one of the most malignant and at the same time most disabling pain disorders in humans. Social isolation, personality changes, fear, depression, despondency, anger, sadness, despair and giving up the will to live are his diverse companions. Relatives usually suffer, frightened and desperate. Today, cluster headaches can usually be diagnosed quickly and precisely with specialized knowledge. There are very effective treatment options that, if known and applied appropriately, usually provide effective and quick help.

Prevent pain, avoid complications

Cluster headaches are rarely found in medical education and training. The severely disabled law does not know the name of the severe pain disorder. Those affected are still considered the stepchildren of medicine. Even the German native language doesn't have a word for this pain. Cluster headache is the nameless pain. The result is pain illiteracy. It is often called a suicide headache: the extinguished will to live without hope describes the tragic individual consequence of a late diagnosis and ineffective treatment.

In addition to the individual suffering, there are very high costs for the insured community and for the world of work over very long periods of life. Misdiagnoses and incorrect treatment cause severe suffering and disabilities that could often have been avoided with timely and effective therapy. Those affected have to endure discouraging battles with payers for scientifically proven therapies and ultimately give up. Although effective therapies have long been known and described in guidelines, they are often not approved. This applies, for example, to the use of oxygen to treat attacks or verapamil to prevent them. The active ingredients are not protected by patents and investments in scientific research are not economical for manufacturing companies due to the legal framework. The targeted development of new active ingredients cannot be economically implemented for the limited indication area due to modern legal requirements for rare forms of headache.

Conversely, there are approved medications for the acute treatment of individual cluster headache attacks. These are available in the form of sumatriptan injection pens for independent subcutaneous use or in the form of nasal sprays for administering triptans. These can be an indispensable aid for short-term use in the setting phase of preventative treatment. However, they are not a practical solution for long-term use, especially in cluster headaches with a long active period or in chronic forms. What is urgent is a quick and reliable diagnosis and the establishment of immediate and effective prevention to prevent future attacks.

Make knowledge available

A key indicator of an efficient and modern healthcare system is that suffering and pain are quickly alleviated and patients are spared a medical odyssey, diagnostic delays and ineffective therapies. Serious and rare diseases in particular manifest themselves with complex phenomenology, have multi-causal development mechanisms and present with a wide range of physical and psychological effects. As a rule, they cannot be treated in a specialized, state-of-the-art manner across the board in every location. Without knowledge of contemporary diagnostic criteria, bundling of experience through specialization and implementation of current scientifically proven treatment paths, misdiagnoses and ineffective treatment courses easily arise.

In order to make current knowledge available in a highly specialized manner for care, the concentration of experience and knowledge in specialized competence centers is essential. Specialized competence centers can also provide interdisciplinary care for rare headache pain disorders at the latest scientific level and specifically develop and evaluate new therapy options.

Even though cluster headaches and other trigeminal autonomic forms of headaches are rare headache diseases compared to the common diseases migraine and tension headaches, overall a large number of people nationwide suffer from this serious pain disorder. In Germany alone, it is estimated that around 240,000 people suffer from cluster headaches over long periods of life, often many decades.

Coordinate care

In recent years, a decisive improvement in the care of those affected has been achieved, particularly through the committed initiatives of the nationwide Federal Association of Cluster Headache Self-Help Groups CSG eV in collaboration with clinical and scientific experts.

The cluster headache self-help groups keep each other up to date with the latest research, are highly specialized in the latest research results and pass on the knowledge directly at regional and national meetings and on the Internet (see ; ) . The practical implementation of therapeutic options in the drug area for acute therapy as well as for prevention can be discussed and optimized. Especially in an area of ​​medicine that is very difficult to access randomized controlled studies due to the rarity of the disease, this can provide new insights into the effectiveness and tolerability of therapeutic procedures.

Thanks to modern information options on the Internet, those affected are now often able to find out about the clinical picture for the first time based on descriptions from others, to make a diagnosis themselves and to compare it with their own symptoms. The Federal Association of Cluster Headache Self-Help Groups has documented in an exemplary manner how those affected can actively intervene in the medical care of rare diseases and help organize a much better, more effective and also more cost-effective care landscape.

In collaboration with the Federal Association of Cluster Headache Self-Help Groups, the idea of ​​a competence center for cluster headaches was developed and implemented for the first time in 2007. In cooperation with the Techniker Krankenkasse and other nationwide health insurance companies, a nationwide integrated care network for the treatment of headache disorders was developed. The goal was to enable nationwide coordinated treatment paths for effective, rapid and barrier-free diagnostics and therapy. This supply network is intended to provide local access to specialized practices. Relevant pain therapy regional centers can be found nationwide via the Internet. At the same time, the supply channels were coordinated and optimized in terms of efficiency through treatment paths.

The aim of the nationwide coordinated treatment paths as part of integrated headache care (IV-K) is effective, rapid and barrier-free diagnosis and therapy for those affected:

– The participants in the nationwide treatment network with specialized regional centers and clinics receive further training on current treatment options for cluster headaches and the treatment paths are specifically coordinated.

  • Through local professionalization, qualified contact points for cluster headache sufferers are being established and expanded nationwide in the federal states.
  • Cluster headache attacks without effective prevention are considered an emergency with the possibility of short-term presentation to the Competence Center for Rare Headache Disorders.
  • A consultation service from the competence center is provided for regional doctors to provide information about therapy problems.
  • Research projects to improve care are planned and carried out
  • The doctors providing further treatment will be informed about the self-help work of the cluster headache self-help groups.
  • National training courses for doctors take place with the participation of cluster headache self-help groups.
  • A nationwide list of regional contacts for cluster headache self-help groups and local network partners is maintained and made available on the Internet.
  • In addition to national networking, networking with international working groups is also important. The task is therefore to bring together scientific findings globally and to make them available and bundled as quickly as possible for care in the treatment network.
  • An effective and rapid transfer of knowledge as well as the direct consideration of the needs of those affected are intended to optimize clinical care and improve profitability.
  • The creation of a web-based progress register is intended to evaluate therapeutic options and their cost-effectiveness.
  • Optimization of diagnostics and treatment should be promoted by promoting training, further education and training as well as by involving nursing staff and auxiliary professions.
  • Public relations work as well as the involvement of health policy and health care payers are intended to bring together the needs of the insured community and individual patients.

The nationwide headache treatment network and the development of additional competence centers for the care of cluster headache patients are being gradually expanded and supplemented. Participation is open to specialized centers that want to get involved in this area.