Morbus Bechterew: Underdiagnosed and suboptimal treated

22.12.2009 11:35

German Bechterew's Disease Association - largest nationwide patient survey

There is a significant need for optimization in the care of patients with Bechterew's disease - this is the result of the largest nationwide patient survey to date, which was carried out by the German Bechterew's Disease Association (DVMB) in collaboration with Professor Dr. Herbert Kellner was carried out. On average, those affected only receive their exact diagnosis almost nine years after the first symptoms appear, and not even one in five patients is treated with modern biologics such as the TNF-a receptor etanercept (Enbrel®).

The project was supported by Wyeth Pharma, a Pfizer Group company. In the survey, 4,818 patients with Bechterew's disease provided information about, among other things, the course of the disease, diagnosis, therapeutic interventions and their current state of health. Almost twice as many men (66 percent) as women (34 percent) took part in the study; the average age of those surveyed was 56 years. In most patients, the disease became noticeable at a very young age. More than three quarters (76.9 percent) of those surveyed were younger than 30 years old when they first had symptoms, and a quarter of patients (26.1 percent) were even younger than 20 years old.

Diagnosis only after nine years

However, it usually took a few years for those surveyed from the first symptoms to appear until the diagnosis was made: on average, the disease was only diagnosed between the ages of 34 and 35. The period from the appearance of the first symptoms to the diagnosis took an average of nine years. Women have to wait a particularly long time for an exact diagnosis: depending on the location of the symptoms, the diagnosis took up to two years longer for them than for men. In almost two thirds of the cases (63.8 percent) the diagnosis was made by a rheumatologist or a doctor with prior rheumatology training.

Biologics underrepresented

Almost three quarters of the patients (74 percent) were treated with non-steroidal anti-inflammatory drugs (NSAIDs), of which around 20 percent were treated with coxibs. Almost 20 percent of those surveyed also took other analgesics (e.g. paracetamol, opioids). In addition, sulfasalazine, methotrexate and psychotropic drugs were administered. Only one in five patients received a modern biologic; at 37 percent, etanercept (Enbrel®) was used most frequently.

Patients who were better or much better at the time of the survey than twelve months earlier cited therapy with biologics as the most common reason for the improvement. The patients saw further reasons for an improvement in their illness, including more exercise or a treatment. Kellner drew the following conclusion from the results of the largest nationwide patient survey to date: “There is a great need for optimization for patients with ankylosing spondylitis: the diagnostic process urgently needs to be improved and modern therapeutics must be given a different status in the treatment of ankylosing spondylitis.”

Massive limitations due to Bechterew's disease

The disease severely restricts those affected in their everyday lives - 71 percent of Bechterew's disease patients have a severely disabled person's ID. In addition, respondents reported numerous comorbidities such as peripheral joint involvement, iritis, psoriasis, ulcerative colitis, Crohn's disease, and fibromyalgia. Ludwig Hammel, Managing Director of the DVMB, described the long journey from the appearance of the first symptoms to the diagnosis with persistent pain, misdiagnoses, the prescription of non-specific medicines and the resulting burden on those affected. He emphasized how important it is for patients with Bechterew's disease to obtain extensive information about the disease, but also to accept the disease and seek intensive exchange with other affected people.