Interstitiële cystitis, voorbij BPS/IC. Etiologie, epidemiologie en klinische presentatie. Een overzicht vanuit praktijk en literatuur

Weidenaar, Alida C.; Schout, Barbara M.A.; Glas, Afina S.

doi:10.1007/s13629-023-00382-5

Cited by 1 publication

(3 citation statements)

References 37 publications

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“…This aligns with international literature [3]. There is an estimated 1860 IC/BPS patients diagnosed in the Netherlands, but it is likely there are many undiagnosed patients due to diagnostic delay and misdiagnosis [4]. The syndrome is uncommon, but it does severely impact the quality of life (QoL) of the individuals, resulting in a high burden on healthcare providers.…”

Section: Introductionsupporting

confidence: 82%

“…The section ended with the administration of the EQ-5D 5L validated questionnaire, designed to assess their QoL in different domains. (4) The treatment section covered many different (alternative) treatment options for IC/BPS that are used by patients within the Netherlands. Participants were asked to answer, for each treatment, whether they had undergone the treatment, its efficacy on their symptoms, the presence of complications and their (dis)continuation with the treatment.…”

Section: Methodsmentioning

confidence: 99%

“…3 Percentages reported are from patients who filled this question in (which was less than under 2 ). 4 The O'Leary ICSI/PI questionnaire consists of the four-item ICSI (symptom index) that measures severity of daytime urgency frequency, nighttime urination and pain or burning, and a four-item ICPI (problem index) concerning how problematic symptoms are perceived. A scoring system between 0 and 20 is used.…”

Section: Demographicsmentioning

confidence: 99%

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Quality of Life and Treatment Modalities in Patients with Interstitial Cystitis: The Patients’ Perspective

Ginkel,

Martens,

Scholtes

et al. 2024

Healthcare

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Background: Quality of life (QoL)-based outcomes are hardly incorporated into interstitial cystitis/bladder pain syndrome (IC/BPS) guidelines, because studies are limited and outdated. Therefore, guidelines might not reflect the current clinical situation accurately. Secondly, guidelines suggest using a multimodal approach for BPS/IC management, but data on the patient-perceived efficacy of these therapies are limited. The aim of this study is to investigate the perception of IC/BPS patients of their QoL, to determine which treatments they have received, and to examine how they evaluate the efficacy of these various (alternative) therapies. Methods: A quantitative retrospective database evaluation was performed, with data from an existing IC/BPS patient survey (n = 217) that was conducted in 2021. This survey contained QoL data based on validated questionnaires such as EQ-5D 5L. Results: The QoL of patients is affected significantly by IC/BPS. This is evident from the various affected domains on the EQ-5D 5L. The symptom severity was negatively affected by a delay in diagnosis, and there were clear differences in QoL domains between females and males. Secondly, coagulation therapy and intravesical glycosaminoglycan (GAG) therapy were most appreciated by patients. Other (alternative) treatments were commonly utilized, although some had doubtful results and high discontinuation rates. Conclusion: QoL is considerably impaired in IC/BPS patients. The diverse responses and adherence to various treatments warrant a personalized approach (phenotype-oriented therapy). To achieve QoL improvement, it is important to incorporate the patient’s perspective in treatment guidelines.

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Section: Introductionsupporting

confidence: 82%

Section: Methodsmentioning

confidence: 99%