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Die Versorgungssituation von Patienten mit interstitieller Zystitis in Deutschland

Ergebnisse einer Umfrage unter 270 Betroffenen

The care situation of patients with interstitial cystitis in Germany

Results of a survey of 270 patients

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Zusammenfassung

Hintergrund

Mittels eines umfangreichen Fragebogens wurde die Versorgungssituation von 270 an interstitieller Zystitis (IC, „bladder pain syndrome“) erkrankten Patienten in Deutschland erfasst. Trotz umfangreicher Literatur zur IC (62.000 Literaturstellen in PubMed) ist über den Versorgungsalltag und die Qualität der Patientenversorgung fast nichts bekannt.

Ergebnisse

Die Patienten sind zu 94 % weiblich, zu 6 % männlich. Das Durchschnittsalter der Frauen beträgt 53,5 Jahre, das der Männer 67,0 Jahre. Die Patienten fühlen sich zu 47,77 % über ihre Erkrankung gut bis sehr gut informiert – 75 % von ihnen wünschen sich aber weitergehende Informationen. Als Informationsquelle dient in vielen Fällen das Internet. Durch die sozialen Netzwerke wird der Informationsaustausch unter den Patienten voraussichtlich zunehmen. Die Diagnose IC wurde am häufigsten (62,22 %) durch Biopsie/histologische Untersuchung gestellt. Es folgen Urodynamik, Kaliumtest, Hydrodistension und Zystoskopie. Die durchschnittliche Diagnosedauer betrug 9 Jahre. 46,67 % der Patienten suchten über 20-mal einen Arzt auf, ehe die Diagnose gestellt wurde; 51,84 % der Patienten müssen pro Tag > 14-mal Wasser lassen. Pollakisurie, Nykturie und Schmerzen stehen an der Spitze der beklagten Beschwerden. Ein Viertel der Patienten klagt über eine Dranginkontinenz. Von oralen Medikamenten werden Schmerzmittel am häufigsten eingenommen (61,7 %), gefolgt von Pentosanpolysulfat, Antidepressiva, Antiepileptika, Krampflösern und Mitteln gegen Harndrang. In der Patienteneinschätzung des Behandlungserfolgs (sehr gut und gut geholfen) der oralen Medikamente führen Pentosanpolysulfat, Schmerzmittel, Antidepressiva und Antiepileptika. Zur Instillation in die Harnblase werden hauptsächlich Medikamente, die die Glycosaminauskleidung der Blase wieder herstellen, angewendet: Hyaluronsäure, Chondroitinsulfat, die Kombination von beiden und Pentosanpolysulfat. Bei der Patienteneinschätzung des Behandlungserfolgs (sehr gut und gut geholfen) der Instillationstherapie lautet die Reihung: Chondroitinsulfat (62,69 %), Hyaluronsäure (55,77 %), Kombination von beiden (53,66 %) und Pentosanpolysulfat (46,30 %). Überraschend häufig (bei 119 Patienten) wurde das EMDA-Verfahren („electromotive drug administration“) mit Gleichstromanwendung zur Medikamenteneinbringung in die Blasenwand genannt. Der Erfolg (sehr gut und gut geholfen) lag in der Selbsteinschätzung mit 61,34 % an der Spitze der intravesikalen Verfahren.

Schlussfolgerung

Im Vergleich aller medikamentöser Verfahren in der Selbsteinschätzung der Patienten liegt die Instillation von Medikamenten in die Harnblase mit 53,53 % sehr gut geholfen und spürbar geholfen bei 368 Nennungen vorn, gefolgt von speziellen invasiven Verfahren mit 50,56 % (n = 271), alternativen Therapien mit 41,11 % (n = 287) und oraler Medikation mit 39,75 % (n = 1024). Hyaluronsäure- und Chondroitinsulfatpräparate, die Kombination von beiden und Pentosanpolysulfat (oral und intravesikal) werden von den gesetzlichen Krankenkassen nicht erstattet. Über 40 % der damit Behandelten brachen daher aus Kostengründen die Therapie ab.

Abstract

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.

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Danksagung

Die Autoren danken allen Studienteilnehmern und der Firma FARCO-PHARMA GmbH für die finanzielle Unterstützung zur Durchführung dieser Studie. Diese Studie wäre ohne die Unterstützung des ICA Deutschland (Interstitial Cystitis Association Deutschland e. V.) und der Deutschen Kontinenz Gesellschaft e. V. nicht möglich gewesen.

Interessenkonflikt

Der korrespondierende Autor weist für sich und seine Koautoren auf folgende Beziehungen hin: PD Dr. med. Gert Froehlich ist als Berater für die Firma Farco-Pharma tätig. Prof. Dr. Dieter Jocham ist als Berater für die Firma Farco-Pharma tätig. Frank Sandig und Prof. Dr. Andreas Ziegler haben für das Datenmanagement und die statistische Analyse dieser Studie Honorare von der Firma Farco-Pharma erhalten.

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Authors and Affiliations

  1. Urologische Klinik und Poliklinik, Universität zu Lübeck, Universitätsklinikum Schleswig-Holstein, Campus Lübeck, Ratzeburger Allee 160, 23538, Lübeck, Deutschland

    D. Jocham

  2. Toscolano Maderno, Italien

    G. Froehlich

  3. Institut für Medizinische Biometrie und Statistik, Universität zu Lübeck, Universitätsklinikum Schleswig-Holstein, Campus Lübeck, Lübeck, Deutschland

    F. Sandig & A. Ziegler

Authors
  1. D. Jocham
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  2. G. Froehlich
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  3. F. Sandig
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  4. A. Ziegler
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Corresponding author

Correspondence to D. Jocham.

Additional information

Unter Mitarbeit von Prof. Dr. S. Störkel, Dr. R. Stratmeyer, Dr. A. Wördehoff, B. Mündner-Hensen und J. Hensen (ICA-Deutschland e. V.), Deutsche Kontinenz Gesellschaft e. V., G. Odenthal und K. Tobien (FARCO-PHARMA GmbH).

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Jocham, D., Froehlich, G., Sandig, F. et al. Die Versorgungssituation von Patienten mit interstitieller Zystitis in Deutschland. Urologe 52, 691–702 (2013). https://doi.org/10.1007/s00120-013-3130-8

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  • DOI: https://doi.org/10.1007/s00120-013-3130-8

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