Coordinated care for cluster headache

Late diagnosis

On average, according to a survey of cluster headache self-help groups in Germany, it takes more than eight years for a correct diagnosis to be made. Effective diagnoses are often made very late or not at all, meaning that effective therapies are either not initiated or only started after many agonizing years of a painful odyssey, doctor-hopping, the use of unconventional methods, and serious complications. Furthermore, when undiagnosed, misdiagnosed, or untreated, cluster headache is one of the most debilitating and simultaneously most disabling pain disorders. Its many companions include social isolation, personality changes, anxiety, depression, despondency, anger, grief, despair, and a loss of the will to live. Family members usually suffer alongside the sufferer, often in fear and despair. Yet, with specialized knowledge, cluster headaches can generally be diagnosed quickly and accurately today. Highly effective treatment options exist, which, when understood and applied appropriately, usually provide effective and rapid relief.

Prevent pain, avoid complications

Cluster headaches are barely mentioned in medical training and continuing education. Disability law doesn't even recognize the name of this severe pain disorder. Those affected are still considered the stepchildren of medicine. Even the German language has no word for this pain. Cluster headache is the nameless pain. The result is a kind of pain illiteracy. It is often called "suicidal headache": the extinguished will to live without hope describes the tragic individual consequence of a delayed diagnosis and ineffective treatment.

In addition to individual suffering, the insured community and the workforce incur very high costs over extended periods of life. Misdiagnoses and incorrect treatments perpetuate severe suffering and disabilities that could often have been avoided with timely and effective therapy. Those affected must endure discouraging battles with health insurance providers for scientifically validated therapies and ultimately give up. Effective therapies have long been known and described in guidelines, but are often not approved. This applies, for example, to the use of oxygen for treating attacks or verapamil for prevention. The active ingredients are not protected by patents, and investments in scientific research are not economically viable for manufacturers due to the legal framework. The targeted development of new active ingredients for the limited indications is not economically feasible due to modern legal requirements for rare forms of headache.

Conversely, while there are approved medications for the acute treatment of individual cluster headache attacks, these are available as sumatriptan injection pens for self-administered subcutaneous use or as nasal sprays for triptan administration. These can be invaluable for short-term use during the initial phase of preventive treatment. However, they are not a practical solution for long-term use, especially for cluster headaches with extended active periods or chronic forms. A rapid and accurate diagnosis and the establishment of an immediate and effective preventive strategy to avert future attacks are crucial.

Making knowledge available

A key indicator of a high-performing and modern healthcare system is the rapid relief of suffering and pain, sparing patients a long and frustrating search for answers, diagnostic delays, and ineffective therapies. Severe and rare diseases, in particular, manifest with complex symptoms, have multifactorial origins, and present with diverse physical and psychological effects. Therefore, they generally cannot be treated comprehensively and with state-of-the-art specialized care everywhere. Without knowledge of current diagnostic criteria, the pooling of expertise through specialization, and the implementation of current, scientifically validated treatment pathways, misdiagnoses and ineffective treatment courses can easily occur.

To make current knowledge highly specialized and readily available for patient care, the concentration of experience and expertise in specialized centers of excellence is essential. These centers can also provide interdisciplinary care for rare headache disorders at the highest scientific level and develop and evaluate targeted new treatment options.

Although cluster headaches and other forms of trigeminal autonomic cephalalgias are rare headache disorders compared to more common conditions like migraine and tension headaches, a large number of people across Germany suffer from this severe pain disorder. In Germany alone, it is estimated that around 240,000 people suffer from cluster headaches for extended periods, often many decades, of their lives.

Coordinate supply

In recent years, thanks in particular to the dedicated initiatives of the nationwide Federal Association of Cluster Headache Self-Help Groups CSG eV in cooperation with clinical and scientific experts, a decisive improvement in the care of those affected has been achieved.

Cluster headache self-help groups keep each other up-to-date with the latest research, are highly knowledgeable about the newest findings, and share this information directly at regional and national meetings and online (see www.clusterkopf.de ; www.headbook.me) . The practical implementation of therapeutic options, both in terms of medication and prevention, can be discussed and optimized. Especially in a field of medicine where randomized controlled trials are difficult to access due to the rarity of the disease, this can provide new insights into the effectiveness and tolerability of treatment methods.

Thanks to modern online information resources, those affected can often learn about the condition for the first time by reading descriptions from others, making a self-diagnosis, and comparing it to their own symptoms. The German Federal Association of Cluster Headache Self-Help Groups has documented, using examples, how those affected can actively participate in the medical care of rare diseases and help organize a significantly better, more effective, and also more cost-efficient healthcare system.

In collaboration with the German Federal Association of Cluster Headache Self-Help Groups, the idea of ​​a competence center for cluster headaches was developed and first implemented in 2007. In cooperation with Techniker Krankenkasse (TK) and other nationwide health insurance companies, a nationwide integrated care network for the treatment of headache disorders was developed. The goal was to enable nationally coordinated treatment pathways for effective, rapid, and accessible diagnosis and therapy. This care network is intended to provide local access to specialized practices. Relevant regional pain therapy centers can be located nationwide via the internet. Simultaneously, care pathways were coordinated and optimized for efficiency through these pathways.

The goal of the nationwide coordinated treatment pathways within the framework of integrated care-headache (IV-K) is effective, rapid and barrier-free diagnosis and therapy for those affected:

– 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 pathways are specially coordinated.

  • Through professionalization on site, qualified contact points for people suffering from cluster headaches are being established and expanded across the federal states.
  • Cluster headache attacks without effective prevention are considered an emergency requiring immediate appointment at the Competence Center for Rare Headache Diseases.
  • A consultation service from the competence center for regional doctors is provided to offer information on therapy problems.
  • Research projects are planned and carried out to improve care
  • The treating physicians are informed about the self-help work of the cluster headache self-help groups.
  • Supra-regional medical training courses are held 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. Therefore, the goal is to consolidate scientific findings globally and make them available and available for use in the treatment network as quickly as possible.
  • Effective and rapid knowledge transfer, as well as the direct inclusion of the needs of those affected, should optimize clinical care and improve economic efficiency.
  • The development of a web-based progress registry is intended to assess treatment pathways and evaluate their cost-effectiveness.
  • Optimization of diagnostics and treatment should be promoted by supporting initial, advanced and further training, as well as by involving nursing staff and support professions.
  • Public relations efforts, as well as the involvement of health policy and healthcare payers, are intended to bring together the needs of the insured community and individual patients.

The nationwide headache treatment network and the development of further centers of excellence for the care of cluster headache patients are being successively expanded and supplemented. Specialized centers wishing to become involved in this area are welcome to participate.