Interstitial Cystitis/ Bladder Pain Syndrome [Ic/Bps]: Assessment of Knowledge and Awareness in Clinical Practictioners of India

Ms. Cheshta Jalan *¹; Dr. Kaushal Kapadia²

1. Texila Americal University

2.  Clinical Research Professional

*Correspondence to: Ms. Cheshta Jalan, Texila Americal University.

Copyright

© 2025 Ms. Cheshta Jalan. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Received: 02 January 2025

Published: 08 January 2025

DOI: https://doi.org/10.5281/zenodo.14625599

Abstract

Introduction: Interstitial Cystitis / Bladder Pain Syndrome (IC/BPS) is a chronic and incapacitating disorder marked by ongoing bladder pain, discomfort, and increased frequency of urination, which greatly undermines the quality of life for affected individuals. Despite being widely acknowledged in Western countries, IC/BPS is still not often diagnosed or reported accurately in India.

The objective of this study is to evaluate the extent of understanding and consciousness of IC/BPS among clinical practitioners and the general population in India.
Objectives: The primary objective of this research is to evaluate the awareness and understanding of IC/BPS among medical professionals, including urologists, gynecologists, and general practitioners, as well as to assess the level of awareness among the Indian population.  Furthermore, the study aims to ascertain the obstacles and impediments to precise diagnosis and efficient treatment of IC/BPS in the healthcare setting of India.
Methods: Data was gathered from a representative number of clinical practitioners in key urban areas of India, as well as from a diverse demographic of the general population. The survey quantified knowledge, diagnostic procedures, treatment preferences, and perceived obstacles.
Results: Initial results suggest that both clinical practitioners and the general community in India have a limited level of awareness and understanding of IC/BPS. A significant number of healthcare professionals indicated little familiarity with IC/BPS cases and inadequate training in its diagnosis and treatment. A considerable segment of the general populace harboured limited knowledge of the disease, frequently conflating its symptoms with those of more frequently diagnosed urinary tract infections (UTIs). Furthermore, the study revealed that cultural stigma, absence of defined diagnostic criteria, and restricted access to specialized treatment are significant obstacles to the successful management of IC/BPS in India.
Conclusion: The results emphasize the immediate requirement for focused educational programs aimed at enhancing awareness and comprehension of IC/BPS among healthcare professionals and the general Indian community.

Introduction

The existence of this disease happens to be there since 19^th century and it has been listed in English literature by Joseph Parrish. In 1938, he had described this condition as “tic duloureux of bladder”, which means a patient is suffering from extremely painful urinary symptoms, despite of not having stone in bladder. (1)

Century passed by and the term IC/BPS had been evolved through many names; from ulcer – non ulcer, from Hunners ulcer to Hunners Lesion to finally be named as PBS ‘painful bladder syndrome’ (1) by ‘ICS [International Continence Society]’ in 2002 and described it as “the complaint of suprapubic pain related to bladder filling, accompanied by other symptoms such as increased daytime and night-time frequency, in the absence of proven urinary infection or other obvious pathology” (2) an later by ‘NIDDK [National Institute of Diabetes and Digestive and Kidney Diseases]’ in 2003 as PBS/IC ‘painful bladder syndrome/ interstitial cystitis’. (1)

Epidemiological studies have reported a variety of findings about the prevalence of IC/PBS. This can be the result of imprecise sample methods, inconsistent criteria for diagnosing IC/PBS, and a lack of conclusive diagnostic investigations. According to traditional data, women are nine times more likely than men to receive an IC/PBS diagnosis. Moreover, the only proven risk factor for this illness is being a woman. The female to male ratio in a managed care population drops to 5:1, suggesting that male patients may not be receiving enough diagnoses for their conditions. (9)

Reports on the prevalence of interstitial cystitis conflict, depending on the country of origin and the criteria used for diagnosis. In addition, there is significant overlap with conditions such as urinary tract infection, pelvic pain syndromes, and overactive bladder. (10)  

There have been variable reports on the prevalence of IC. The prevalence of IC/ BPS is around 45 out of 10,000 in women and 8 out of 100,000 in men (11).

The prevalence of IC is also found to be variable, and it ranges from 52 to 500/100,000 in females compared to 8–41/100,000 in males, and its incidence is reported to be increasing globally (9)

In women, the incidence of clinically proven probable Interstitial Cystitis (IC) was 230 per 100,000 (95% confidence interval 100 to 360), while the incidence of likely IC was 530 per 100,000. Based on the limited data available on patients experiencing urinary symptoms, the revised estimates were 300 per 100,000 (95% confidence interval 120 to 770) for males and 680 per 100,000 (95% confidence interval 360 to 1,300) for women. Moreover, the data obtained from the clinically verified diagnosis suggest that IC is far more prevalent than previously believed. (12)

IC onset is subacute rather than insidious, with classically full – blown disease occurring in a relatively short time. Another study has shown that IC reaches its final state quickly, and there is less chance of further deterioration in symptom severity. (15)

Interstitial cystitis (IC) does not commence as a terminal condition; it initiates with milder, intermittent symptoms that are often misinterpreted. Most individuals with sexual activity-related symptom flares have intermittent IC. Later symptoms include pain and urgent incontinence. When IC flares, UTI is most often misdiagnosed. A history of UTI is twice more likely in patients with IC as compared to controls. Most IC patients have symptoms before 30, although diagnosis is usually delayed until 40. Genetics appear important. These aspects should be considered while assessing women with "early IC" to ensure proper diagnosis, treatment, and lower health care expenditures. (16)

Methodology

The research project was conducted in a survey-based model where the objective of the research project was to evaluate the level of awareness of the disease IC/BPS among the clinical practitioners in India. A validated questionnaire was shared with clinical practitioners, with whom the survey was conducted. The Questionnaires was developed with the help of available literature and by understanding the issues and bottlenecks in the awareness and knowledge of IC/BPS.

Survey was conducted among the Clinicians who are 1^st liner to be approached by this kind of symptoms.

Results

Out of 387 participants, it was recorded that 34.88% [n=135] of Urologists, 30.75% [n=119] of Gyneclogists, 23.00% [n=89] of Urogynecologists and 11.37% [n=44] of Other Speciality of Clinicians had participated and shared their views on based on their awareness and knowledge

Fig 1

Next question asked to them was “if they see patients of IC?”, To which majority of the participants [87.86%, 340 of 387] stated Yes they do see patients with IC whereas 12.14% [47 of 387] stated that they don’t see such patients.

Fig 2 

“Do you see patients with pain, frequency, and urgency where no cause is diagnosed?” was the next question, to which 93.24% [317 of 340] responded Yes and 6.76% [23 of 340] stated No.

Fig 3

The participants were then asked “How will you evaluate the Symptoms?” To which majority 94.71% [322 of 340] stated that they evaluate the symptom based on pain score in routine practice and 100% [340 of 340] stated that they evaluate the symptom for confirmed IC patient on pain score while none [0%] of them opted of never.

For symptom score (e.g. O’Leary Sant) – 92. 65% [315 of 340] stated that they evaluate it on routine basis whereas 100.00% of them stated that they evaluate it for confirmed IC patients while nobody opted never [0%].

For Quality of Life Measure – 7.94% [27 of 340] stated that they evaluate it on routine basis and for confirmed IC patients whereas 92.06% [313 of 340] stated that they never evaluate the symptoms  on basis of Quality of Life.

For PUF [The Pelvic Pain and Urgency/Frequency] Questionnaire – 70.88% [241 of 340] stated that they evaluate it routinely while 85.00% [289 of 340] stated that they evaluate for confirmed IC patients whereas 11.18% [38 of 340] stated that they never evaluate symptoms on basis of PUF Questionnaire.

For Voiding Dairy – 87.35% [297 of 340] stated that they evaluate the symptoms on routine basis whereas 88.53% [301 of 340] stated that they evaluate symptoms on basis of voiding diary for confirmed IC patients while 11.76% [40 of 340] stated never. 11.18% [38 of 340], 6.76% [23 of 340] and 21.47% [73 of 340] stated others for routine, for confirmed IC patients and Never respectively. Which means that they evaluate the symptoms on basis of some other evaluations too.

Fig 4

After the evaluation of symptom and physical examination it was time to look for the investigation which clinicians will prefer to suggest such patients hence the next question asked was “What investigations will you suggest to such patients?” To which 81.18% [276 of 340] stated that they will suggest to do urine dipstick test whereas 12.94% [44 of 340] stated that they suggest this investigation for confirmed IC patient while 5.88% [20 of 340] stated that they never suggest this investigation.

For urine culture test – 58.53% [199 of 340] stated that they suggest urine culture test in their routine practice whereas 6.76% [23 of 340] stated that they suggest urine culture test for confirmed IC patient while 34.71% [118 of 340] stated they never suggest to perform this investigation.

For urine cytology test – 17.06% [58 of 340] stated that they suggest to perform this investigation in their routine practice whereas 69.71% [237 of 340] stated that they suggest to perform urine cytology test for confirmed IC patient while 13.24% [45 of 340] stated that they never suggest to perform urine cytology.

For Vaginal + urethral ureaplasma test – 26.47% [90 of 340] stated that they suggest to perform this test in their routine practice whereas 29.71% [101 of 340] stated that they suggest to perform this investigation for confirmed IC patient while 43.82% [149 of 340] stated that they never suggest to perform this test.

For Vaginal + urethral Chlamydia test – 21.47% [73 of 340] stated that they suggest to perform this test in their routine practice for such cases whereas 13.82% [47 of 340] stated that they suggest to perform this test for confirmed IC patient while 64.71% [220 of 340] stated that they never suggest to perform this test. 2.94% [10 of 340], 54.71% [186 of 340] and 0% stated others for routine, for confirmed IC patients and Never respectively, which means that they prefer to suggest some other investigation to such patients.

Fig 5

As it was clear that majority of the clinicians perform cystoscopy with hydrodistension, it was necessary to take more information on the same. Hence the next question asked to the participants were “If you do cystoscopy with hydrodistension, please fill in: height of water column? And duration of distension?”.

To which they stated that 75cms of H₂O should be the average height of water column whereas min 50cms of H₂O should be the height of water column while maximum should be 80cms of H₂O should be the height of water column.

For Duration of distension [in mins], they stated that average duration should be 33.32 mins whereas minimum it should be 25mins and maximum it should be for 35mins.

Discussions

The present research was conducted to study the knowledge and awareness of Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) in Indian society. Current research findings indicate a significant insight. In Indian society, many people strongly describe the chronic condition and exhibit some critical areas in which health practitioners, legislators, and researchers should pay attention. These are discussed in the discourse as it relates to an even broader context in which the international health trends and challenges of controlling IC/BPS are presented.

Knowledge of Healthcare Professionals

The research has pointed out that the inadequacy of knowledge on IC/BPS among health providers is most glaring, mostly in primary care contexts. Of all these factors, only 12.65% of the practice was said to comply with GIBS standards, which are both exhaustive and contextually appropriate. Similar findings were reported from many countries, with the complexity of IC/BPS due to its co-occurring conditions with pelvic pain syndromes and Urinary Tract Infections (UTI), which usually renders healthcare providers ill-prepared (Akiyama & Luo, 2018). The absence of models specific to IC/BPS in the education curricula of medicine was identified as an important contributor to this knowledge gap.

A two-pronged approach is required to address these deficiencies—at least in the integration of high-quality case studies focusing on IC/BPS residing in undergraduate medical curricula and continued professional development (CPD) opportunities. CPD may include seminars, online courses, and cross-disciplinary conferences for sharing best practices and new research. Finally, they might offer a care paradigm developed with the relationship of urologists, gynecologists, pain specialists, and mental health practitioners.

Additionally, mentorship programs whereby veteran doctors train less-experienced health professionals on IC/BPS management can be very helpful. These initiatives would involve improving the competence of the healthcare providers and would promote a continuity of care geared towards patient outcomes.

Difficulties in Diagnosis

Both participants and healthcare providers reported challenges in diagnosis, stating the absence of well-defined protocols and limited access to advanced diagnostic equipment in many areas of India. For example, only 44.29% of participants knew about cystoscopy as a diagnostic tool, while only 37.14% knew about uroflowmetry. This illustrates the worldwide situation, wherein IC/BPS diagnosis predominantly relies on clinical evaluation, emphasizing symptom exclusion and cystoscopic observations (Jhang & Kuo, 2017). Diagnostic delays exacerbate the disease burden and result in patient discontent and reduced trust in the healthcare system.

Such ambiguity on diagnosis can create problems relativities with undertreatment or overtreatment adding more misery to the patient outcomes. Therefore, it is vital to develop a flexible yet uniform diagnostic framework tailored for local health systems. Examples of non-invasive diagnostic tools that can serve as alternatives in resource-poor environments are patient history and validated symptom assessments such as the Pelvic Pain and Urgency/Frequency (PUF) Questionnaire, providing provisional options while improving access to cystoscopy.

Investment in telemedicine could also be directed toward enabling remote referrals to specialists, closing the gap in the underserved. These platforms may also be connected to AI applications to facilitate symptom evaluation and initial diagnosis quickly to access care.

Conclusion

The revelations indicate a very serious gap of knowledge and application of the diagnostic and management guidelines for IC/BPS-this is the case with usage of GIBS guidelines up to the low point of 12.65%, indicating the need for wide dissemination and training on such standards. Besides integrating modules focusing on IC/BPS into the institution of medicine, regular professional development programs should be offered so that healthcare providers are sufficiently resourced to manage this complex condition. Failure to foster collaboration among state-of-the-art urologists, gynecologists, pain specialists, and mental health professionals can result in fragmented service provision. In addition to establishing evidence-based protocols and mentorship initiatives, improving diagnostic accuracy and outcome would help improve care standards of IC/BPS patients across the Indian horizon.

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