[The care situation of patients with interstitial cystitis in Germany: results of a survey of 270 patients].

Background: Using a comprehensive questionnaire the care situation of 270 patients with interstitial cystitis (IC) and bladder pain syndrome in Germany was recorded. Despite comprehensive literature on IC (62,000 citations in PubMed) almost nothing is known of the everyday care and quality of patient care in Germany.

Results: In total 94% of the patients were women and 6% men, the average age of women was 53.5 years and that of men 67 years and 47.77% of the patients felt that they were well or very well informed about the disease whereby the internet was the source of information in many cases. The exchange of information among patients will increase further through social networks. The diagnosis of IC was made most frequently (62.22%) by biopsy and histological examination followed by urodynamics, potassium test, hydrodistension and cystoscopy. The average duration of the diagnosis was 9 years, 46.67% of the patients consulted a doctor more than 20 times before the diagnosis was made and 51.84% had to pass water more than 14 times per day. Frequency, nocturia and pain were the leading symptoms and 25% of the patients complained of urge incontinence. Among oral medications, analgesics were taken most frequently (61.7%) followed by pentosan polysulphate, antidepressants, antiepileptic drugs, antispasmodics and remedies for urinary urgency. In the self-assessment of the success of treatment with oral medications (helped very well and well), pentosan polysulphate, analgesics, antidepressants and antiepileptic drugs were considered to be the best. Medications that restore the glucosamine lining of the bladder were used predominantly for instillation into the bladder included hyaluronic acid, chondroitin sulphate and a combination of both and pentosan polysulphate. In the self-assessment of the success of treatment with instillation therapy (helped very well or well) the order was: chondroitin sulphate (62.69%), hyaluronic acid (55.77%), a combination of both (53.66%) and pentosan polysulphate (46.30%). The electromotive drug administration (EMDA) procedure with the use of direct current to introduce medications into the bladder wall was mentioned surprisingly often, namely, in 119 patients. In the self-assessment success (helped very well or well) was considered the best for intravesical procedures with 61.34%.

Conclusions: Compared with all drug procedures instillation of medications into the bladder was mentioned 368 times and was assessed by the patients as having helped very well and noticeably by 53.53%, followed by special invasive procedures at 50.56%/271 mentions, alternative therapies at 41.11%/287 mentions and oral medication at 39.75%/1,024 mentions. Hyaluronic acid and chondroitin sulphate products, the combination of both and pentosan polysulphate (oral and intravesical) are not reimbursed by the statutory health insurance. Over 40% of patients treated with these therefore discontinued the treatment for reasons of cost.