Quality of life and healthcare resource use in patients with bladder pain syndrome: A survey of UK patients

Abstract

Objectives:

The main aim of this study is to characterise the humanistic burden of bladder pain syndrome (BPS) on patients within the United Kingdom and to estimate the key healthcare resource usage and cost of treating these patients.

Method:

An online survey was administered through two charities. Respondents were asked questions on BPS diagnosis, socio-demographics and health-related quality of life using the O’Leary-Sant Interstitial Cystitis Symptom Index (ICSI) and Problem Index (ICPI), the Pelvic Pain and Urinary/Frequency (PUF) and the EQ-5D questionnaires. Healthcare resource and therapy use, for the previous 6 months, were recorded and used to calculate economic burden.

Results:

A total of 252 patients completed the survey. Mean ICSI ICPI scores were 12.6 and 11.0, respectively, indicating severe symptoms. Mean PUF score was 21.2, indicating poor health status and a high number of BPS-related symptoms and problems. Mean EQ-5D utility score was 0.541. In the previous 6 months, 172 (68%) saw their general practitioner (GP) and 80 (32%) a primary care nurse, and 165 (65%) had one or more outpatient visits, due to their BPS.

Conclusion:

This survey adds to our current understanding of BPS in the United Kingdom, highlighting that patients with BPS have poor health-related quality of life and incur high resource use.

Level of evidence:

Not applicable

Keywords

Interstitial cystitis bladder pain syndrome healthcare resource utilisation health-related quality of life

Introduction

The European Society for the Study of Interstitial Cystitis (ESSIC) defines bladder pain syndrome (BPS; also known as painful bladder syndrome (PBS) or interstitial cystitis (IC) or IC/PBS) as ‘persistent or recurrent chronic (>6 months) pelvic pain, pressure or discomfort perceived to be related to the urinary bladder accompanied by at least one other urinary symptom such as an urgent need to void or urinary frequency’.¹

The prevalence of BPS is estimated to be in the range of 45/100,000 in females and 8/100,000 in males.^2,3 Recent European population-based cross-sectional data estimated bladder pain to affect around 1.22% of females.⁴ However, evidence from the United States suggests that BPS may be underdiagnosed, with less than 10% of patients receiving a formal diagnosis.⁵

Diagnosis is primarily based on symptoms and signs that characterise the disease, and the exclusion of other conditions that may explain the symptoms.^3,6 The presence of Hunner’s lesions (ulcers), and glomerulations, represents the most distinctive clinical characteristic findings that might be encountered on cystoscopy, in patients with BPS.^1,7,8 Identification of Hunner lesion disease is important as it likely represents a distinct phenotype of BPS which can respond well to targeted therapies, such as fulguration or intra-lesional steroid injection.^9,10

BPS can have a significant impact on patients’ lives, arising from chronic pain as well as the disruption to daily activity and sleep, caused by urinary frequency and nocturia.^11
–13 Previous surveys have found that, in addition to the burden of impaired health-related quality of life (HRQoL), BPS is associated with a reduction in work productivity and increased healthcare resource use.^4,14 However, contemporary data with regard to HRQoL and healthcare resource utilisation, are relatively limited, particularly within the UK patient population.^12
–15

This study aims to characterise the humanistic burden of BPS on patients within the United Kingdom, using two condition-specific measures and one generic preference-based measure, and to estimate key healthcare resource usage to generate an estimated cost of treating these patients.

Method

Survey design

An online survey was conducted through two charities (Bladder Health UK and Bladder & Bowel Community). Both charities hosted the survey link on their website, for approximately 1 month in October 2018. Bladder Health UK also emailed an invitation to participate, and link to the online survey, to patients registered with them, and posted it on social media sites.

Background questions obtained information on socio-demographics and disease history. The survey also included the EQ-5D questionnaire, two condition-specific questionnaires and a set of questions on healthcare use related to their BPS over the past 6 months.

Patient population

Patients reporting a diagnosis of BPS in the United Kingdom were included. A screener question was used to exclude individuals without a BPS diagnosis following cystoscopy, as not all patients involved in the two charities were exclusively sufferers of BPS. Geographic location (‘England’, ‘Scotland’, ‘Wales’, ‘Northern Ireland’ and ‘Other (non-UK)’) was also asked, and all non-UK respondents were excluded.

Measures to assess HRQoL

One generic preference-based measure, the EQ-5D, and two condition-specific measures, the O’Leary-Sant Interstitial Cystitis Symptom Index (ICSI) and Interstitial Cystitis Problem Index (ICPI), and the Pelvic Pain and Urinary/Frequency (PUF) patient symptom scale, were included in the survey. The measures asked patients to describe their health by indicating the level most applicable to them on each item or dimension.

Utility scores are preferred by most health technology assessment (HTA) agencies, such as NICE in the United Kingdom, and are used to inform economic models. Currently, NICE recommends the use of the crosswalk mapping function by Van Hout et al.¹⁶ to link back to an older version of the EQ-5D (EQ-5D-3L) to generate utilities. The EQ-5D-5L consists of the EQ-5D descriptive system and the EQ visual analogue scale (EQ VAS). The descriptive system comprised five dimensions: mobility, self-care, usual activities, pain/discomfort and anxiety/depression. Each dimension had five levels: no problems, slight problems, moderate problems, severe problems and extreme problems based on health ‘today’. The response on these five dimensions was converted to a single summary index number (utility) reflecting preferability compared with other health profiles, with death as 0, and 1 representing full health.

Both the ICSI and ICPI have good psychometrics properties and have been widely used to assess symptom severity and monitor clinical progress in patients with BPS.¹⁷ The O’Leary-Sant questionnaire consists of two brief self-administered indices: the 4-item ICSI (scored 0–20) and the 4-item ICPI (scored 0–16). ICSI scores indicate the following symptoms: none if 0–3; mild if 4–6, moderate if 7–11 and severe if 12–20.

The PUF score has not been subject to as extensive a validation process, but has additional items related to pelvic pain and dyspareunia, which is useful in the diagnosis of BPS.¹⁸ The PUF patient symptom scale consists of a symptom score (0–23) measuring how often a patient experiences a problem, and a bother score (0–12), which notes the degree to which pelvic pain and urinary symptoms bother the patient; bother and symptom scores combine for a total PUF score (0–35).

Assessment of healthcare usage

Brief healthcare resource use questions were used to assist with economic modelling. Patients were asked about their healthcare usage due to BPS over the past 6 months, including numbers of general practitioner (GP)/nurse visits, hospital admissions and treatment usage.

Statistical analysis

Quality-of-life burden

A descriptive analysis of the HRQoL burden of BPS was undertaken. Frequency tables and graphical plots of EQ-5D values, PUF and O’Leary-Sant scores were produced to examine the distribution of responses across HRQoL for each instrument. Overall scores/utilities were summarised using mean, standard deviation, median and interquartile range statistics.

Resource use burden of illness

Healthcare resource use (healthcare visits, procedures and medication) was calculated to estimate the economic burden of treating patients with BPS. The number of healthcare visits (community, hospital and allied health), procedures (cystoscopy) and treatments (bladder distension, nerve stimulation, bladder instillation, antibiotics, injection into bladder wall and others) in the past 6 months was self-reported.

Estimating the total cost of BPS

Unit costs of the corresponding resource use items, sourced from national sources (Personal Social Services Research Unit (PSSRU) and the NHS Reference Costs reports) were applied to calculate the total cost over a 6-month duration. In addition, total cost, excluding procedures and drug costs, was estimated using regression model.

Results

Patient characteristics

A total of 252 patients with diagnosis of BPS participated in the survey. The majority of patients were female (93%) and of white ethnicity (95%), from England (86%) and aged >55 years (Table 1). Median time from onset of symptoms to diagnosis was 2 years (range <1–40 years), with nearly 30% of participants reporting a diagnosis of BPS for over 10 years. Around 40% reported being told by their healthcare professional (HCP) that, following a cystoscopy, they had ‘lesions or ulcers inside your bladder’; 14% ‘Hunner’s lesions or ulcers’; and 15% ‘glomerulations’; 126 patients (50%) reported having any one of these (Table 1).

Table 1.

Patient demographics and disease characteristics of the study sample.

Characteristics	Respondents, n (%) (N = 252)
Age, years
18–54	124 (49.21)
⩾55	128 (50.79)
Sex, female	235 (93.25)
Ethnicity
White	240 (95.24)
Mixed/Multi ethnic group	2 (0.79)
Asian/Asian British	6 (2.38)
Black/African/Caribbean/Black British	2 (0.79)
Other	2 (0.79)
Employment
Employed part-time	46 (18.25)
Employed full-time	63 (25.00)
Self-employed	25 (9.92)
Unemployed	109 (43.25)
Full-time student	9 (3.57)
Current health
Very good health	19 (7.54)
Good health	63 (25.00)
Fair health	90 (35.71)
Bad health	64 (25.40)
Very bad health	16 (6.35)
Location
England	216 (85.71)
Scotland	21 (8.33)
Wales	11 (4.37)
Northern Ireland	4 (1.59)
Number of years since diagnosis
Less than 1 year	49 (19.44)
>1–10 years	130 (51.59)
>10 years	73 (28.97)
Informed by HCP they had ‘lesions or ulcers inside your bladder’*
Yes	99 (39.60)
No	111 (44.40)
Unsure	40 (16.00)
Informed by HCP they had ‘Hunner’s lesions’*
Yes	35 (14.00)
No	160 (64.00)
Unsure	55 (22.00)
Informed by HCP they had ‘glomerulations’*
Yes	37 (14.80)
No	127 (50.80)
Unsure	86 (34.40)
Informed by HCP they had either ‘lesions or ulcers’ and/or ‘Hunner’s lesions’ and/or ‘glomerulations’*
Yes	126 (50.00)
No	126 (50.00)

HCP: healthcare professional.

Values are number (%)

N = 250

Quality of life

A summary of the HRQoL measured in the cross-sectional survey using EQ-5D, ICSI, ICPI and PUF is presented in Table 2.

Table 2.

HRQoL estimates.

	Mean	SD	Min.	Max.
EQ-5D Utility (N = 252)	0.54	0.30	–0.26	1
EQ-5D VAS (N = 156)	55.85	22.46	1	96
ICSI score (N = 251)	12.64	4.61	0	20
ICPI score (N = 251)	10.96	3.71	0	16
PUF score (N = 250)	21.20	6.80	2	35

SD: standard deviation; VAS: visual analogue scale; EQ-5D: EuroQol-5D; ICPI: O’Leary-Sant Interstitial Cystitis Problem Index; ICSI: O’Leary-Sant Interstitial Cystitis Symptom Index; PUF: Pelvic Pain and Urinary/Frequency.

The mean EQ-ED utility score in the BPS patient sample was 0.541 (median 0.654), and mean EQ-5D-VAS score 55.85. These findings demonstrate that patients included in the survey had significant symptoms due to their BPS, and poor quality of life. Only 10 out of the 252 patients involved in the survey reported full health. The lowest utility score in the sample was –0.257. The majority of patients indicated slight to extreme pain or discomfort in the EQ-5D. A large proportion of the patients interviewed also had slight or moderate anxiety or depression (Table 3).

Table 3.

HRQoL estimates.

Distribution of EQ-5D-5L responses	Frequency (N = 252)	Percentage (%)
Mobility
I have no problems in walking about	124	49.21
I have slight problems in walking about	59	23.41
I have moderate problems in walking about	49	19.44
I have severe problems in walking about	20	7.94
I am unable to walk about	0	0.00
Self-care
I have no problems washing or dressing	198	78.57
I have slight problems washing or dressing	28	11.11
I have moderate problems washing or dressing	21	8.33
I have severe problems washing or dressing	4	1.59
I am unable to wash or dress	1	0.40
Usual activities
I have no problems doing my usual activities	68	26.98
I have slight problems doing my usual activities	71	28.17
I have moderate problems doing my usual activities	69	27.38
I have severe problems doing my usual activities	35	13.89
I am unable to do my usual activities	9	3.57
Pain/discomfort
I have no pain or discomfort	14	5.56
I have slight pain or discomfort	77	30.56
I have moderate pain or discomfort	80	31.75
I have severe pain or discomfort	56	22.22
I have extreme pain or discomfort	25	9.92
Anxiety/depression
I am not anxious or depressed	58	23.02
I am slightly anxious or depressed	80	31.75
I am moderately anxious or depressed	74	29.37
I am severely anxious or depressed	25	9.92
I am extremely anxious or depressed	15	5.95

EQ-5D-5L: EuroQol-5D 5 level version; HRQoL: health-related quality of life.

Mean ICSI and ICPI score were 12.637 (median 13) and 10.964 (median 11), respectively. A total of 61% of patients had an ICSI score of ⩾12, indicating severe impact of BPS symptoms; 42% almost always had to urinate less than 2 hours after they had finished urinating; 36% almost always had bladder pain/burning; 50% had to urinate ⩾3 times per night, and 1 in 3 had urgency half the time or almost always (Table 4). Only two participants indicated no problems across all four ICSI items.

Table 4.

Distribution of ICSI responses.

During the past month	Patients (%) (N = 251)
How often have you felt the strong need to urinate with little or no warning?
Not at all	34 (13.55)
Less than 1 time in 5	47 (18.73)
Less than half the time	31 (12.35)
About half the time	47 (18.73)
More than half the time	44 (17.53)
Almost always	48 (19.12)
Have you had to urinate less than 2 hours after you finished urinating?
Not at all	11 (4.38)
Less than 1 time in 5	19 (7.57)
Less than half the time	22 (8.76)
About half the time	35 (13.94)
More than half the time	58 (23.11)
Almost always	106 (42.23)
How often did you most typically get up at night to urinate?
Not at all	20 (7.97)
Once per night	53 (21.12)
2 times per night	52 (20.72)
3 times per night	38 (15.14)
4 times per night	37 (14.74)
5 or more times per night	51 (20.32)
Have you experienced pain or burning in your bladder?
Not at all	10 (3.98)
A few times	41 (16.33)
Fairly often	70 (27.89)
Usually	40 (15.94)
Almost always	90 (35.86)

ICSI: O’Leary-Sant Interstitial Cystitis Symptom Index.

ICPI focused on problems associated with the symptoms of BPS. Over half of the participants described burning pain, discomfort or pressure in their bladder as a ‘big problem’ (55.78%), while a further 28.69% described it as a ‘moderate’ problem. Getting up at night to urinate and frequent urination during the day was indicated as a ‘big problem’ by 32.27% and 30.28% of the patients, respectively (Table 5).

Table 5.

Distribution of ICPI responses.

During the past month How much has each of the following been a problem for you	Patients (%) (N = 251)
Frequent urination during the day?
No problem	15 (5.98)
Very small problem	21 (8.37)
Small problem	43 (17.13)
Medium problem	96 (38.25)
Big problem	76 (30.28)
Getting up at night to urinate?
No problem	26 (10.36)
Very small problem	27 (10.76)
Small problem	42 (16.73)
Medium problem	75 (29.88)
Big problem	81 (32.27)
Need to urinate with little warning?
No problem	37 (14.74)
Very small problem	44 (17.53)
Small problem	38 (15.14)
Medium problem	84 (33.47)
Big problem	48 (19.12)
Burning pain, discomfort or pressure in your bladder?
No problem	8 (3.19)
Very small problem	9 (3.59)
Small problem	22 (8.76)
Medium problem	72 (28.69)
Big problem	140 (55.78)

ICPI: O’Leary-Sant Interstitial Cystitis Problem Index.

Only four participants indicated no problems in the ICPI questionnaire, whereas 23 indicated the maximum problems.

A mean PUF score of 21.2 was reported. Based on the responses to PUF questionnaire, the majority of the patients with BPS go to the bathroom at least seven times or more during the day. Furthermore, half of them reported going to the bathroom three times or more at night. Over a third of patients described pain associated with the bladder or in the pelvis as occurring ‘usually’ (38%) or ‘always’ (36%) (Table 6).

Table 6.

Distribution of PUF responses.

	Patients (%)
How many times do you go to the bathroom during the day? (N = 251)
3–6	38 (15.14)
7–10	90 (35.86)
11–14	63 (25.10)
15–19	35 (13.94)
⩾20	25 (9.96)
How many times do you go to the bathroom at night? (N = 250)
0	19 (7.60)
1	48 (19.20)
2	59 (23.60)
3	30 (12.00)
4+	94 (37.60)
If you get up at night to go to the bathroom, does it bother you? (N = 251)
Never	22 (8.76)
Mildly	65 (25.90)
Moderate	106 (42.23)
Severe	58 (23.11)
Are you currently sexually active? (N = 251)
Yes	134 (53.39)
No	117 (46.61)
If you are sexually active, do you now or have you ever had pain or symptoms during or after sexual intercourse? (N = 197)
Never	24 (12.18)
Occasionally	45 (22.84)
Usually	57 (28.93)
Always	71 (36.04)
If you have pain, does it make you avoid sexual intercourse? (N = 204)
Never	27 (13.24)
Occasionally	59 (28.92)
Usually	63 (30.88)
Always	55 (26.96)
Do you have pain associated with your bladder or in your pelvis? (N = 252)
Never	8 (3.17)
Occasionally	57 (22.62)
Usually	96 (38.10)
Always	91 (36.11)
Do you have urgency after going to the bathroom? (N = 252)
Never	33 (13.10)
Occasionally	123 (48.81)
Usually	64 (25.40)
Always	32 (12.70)
If you have pain, it is usually . . . (N = 246)
Mild	28 (11.38)
Moderate	124 (50.41)
Severe	94 (38.21)
Does your pain bother you? (N = 249)
Never	5 (2.01)
Occasionally	42 (16.87)
Usually	96 (38.55)
Always	106 (42.57)
If you have urgency, it is usually . . . (N = 241)
Mild	45 (18.67)
Moderate	116 (48.13)
Severe	80 (33.20)
Does your urgency bother you? (N = 241)
Never	14 (5.81)
Occasionally	70 (29.05)
Usually	73 (30.29)
Always	84 (34.85)

PUF: pelvic pain and urinary/frequency.

Healthcare resource use

Resource usage due to BPS and cost calculations were typically per patient over 6 months. A total of 172 (68.75%) and 80 (31.75%) patients reported visiting a GP and primary care nurse, respectively, at least once in the previous 6 months due to their BPS (Figure 1). The maximum GP and nurse visits in the previous 6 months due to BPS was 50 and 40, respectively, equating to approximately twice a week (Supplemental Table S1). Overall, 102 patients saw their GP three or more times during this period (Figure 1).

Figure 1.

Healthcare resource use in primary care GP and nurse visits in the previous 6 months.

A total of 165 patients (65%) indicated one or more outpatient visits due to their BPS (Figure 2).

Figure 2.

Healthcare resource use in secondary care outpatient and inpatient visits in the previous 6 months.

The maximum number of outpatient visits indicated was 24 in 6 months (mean 3.16 (SD 4.10); median 4.1; range 1–24). Approximately 15% (n = 39) of patients reported hospital admission; the general ward had the highest frequency of patients admitted (n = 12) and nights occupied (28 nights). Other procedures or treatments, carried out at least once, in the previous 6 months are shown in Supplemental Table S1. Bladder distention was carried out in 34 (13%) patients, nerve stimulation in 13 (5%) and bladder instillation in 87 (35%) patients. Antibiotics were used in almost half of the patients 123 (49%), and bladder wall injections given to 12 (5%) patients.

Resource use and unit costs

Based on the resource usage, both primary and secondary care, over 6 months, the mean total cost (excluding drugs and treatment costs) was estimated as £860.36 per patient (SE: 95.55; 95% CI = £672.18–£1048.54) (Table 7).

Table 7.

Resource use and total cost (over a 6-month period).

Healthcare resource item	Unit cost* (£)	Mean resource use per patient	Mean cost per patient (£)
GP visits	37.00	3.33	123.33
Nurse visits	10.50	1.19	12.50
Out-patient visits	125.00	3.16	394.84
A&E visits	244.93	0.45	109.83
Hospital admissions – specialist ward^a	957.08	0.13	121.53
Other items^b			98.33
Total			860.36

GP: general practitioner; A&E: accident and emergency.

Unit cost was obtained from national sources such as the Personal Social Services Research Unit (PSSRU (2017) and the NHS Reference Costs reports and applied to resource usage.

It was assumed that the specialised ward indicated by patients with BPS is urology.

Other items include other costs captured in the survey, for example, inpatient stays on general or other wards, day cases and ambulance transport.

A significant proportion of the total resource utilisation was attributed to treatments or procedures. Bladder instillation has the highest mean cost (£427.57), with 34.52% of the participants having had at least one over the past 6 months. The total cost of procedures carried out in BPS patients over the past 6 months was £829.19 (Supplemental Table S2).

Based on this information, the likely costs to be incurred by an average Clinical Commissioning Group (CCG) (at the time of the study) of 226,000 people¹⁹ were calculated. An incidence of BPS with either glomerulations or Hunner’s lesions of 0.018%²⁰ gives an average CCG 41 patients to manage, leading to healthcare resource use cost of £35,274.76 over 6 months. In addition, based on the reported treatments and procedures prescribed to the patients surveyed, a further cost of £829.19 per patient in a 6-month period was calculated, which would cost the average CCG £33,996.79 for 6 months, for 41 patients. Thus, the total cost of treatment (6 months) for the theoretical average CCG would be £69,271.55.

Discussion

This is the first known study to describe the HRQoL using three different validated questionnaires, and the costs associated with BPS, in a UK patient population. This not only provides greater insight into the different ways BPS can impact the lives of patients, it also allows comparison with other conditions on quality of life.

Although difficult to define, due to the subjective nature of quantification, questionnaires can be a useful tool in evaluating QoL in patients with BPS.^21,22 In addition to the generic preference-based measure EQ-5D, the ICSI, ICPI and PUF patient symptom scale are all well-established assessment measures used to evaluate patients with BPS.^23
–26

The 252 patients included in this study had mean ICSI, ICPI and PUF scores indicative of poor health status, and high BPS-related symptoms and problems. Around 70% described pain associated with the bladder or in the pelvis as occurring usually or always. In addition to physical function, vitality and social functioning, bodily pain is known to be associated with a significantly lower QoL, and symptom severity an independent predictor of worse bodily pain, in BPS.^27,28

With EQ-5D values being anchored at 1 for full health and 0 representing health states regarded as being worse than a state that is ‘as bad as being dead’,²⁹ only 10 out of the 252 patients involved in this survey reported full health. In addition, a mean EQ-5D utility score of 0.5 highlights the overall impact BPS has on patient HRQoL, reflective of other long-term chronic pain conditions such as rheumatoid arthritis, fibromyalgia and multiple sclerosis.^30
–32

It should be noted that the instruments assessed health across different time periods and focused on different aspects; nevertheless, the findings are consistent. The high percentage of BPS population with severe symptoms in the sample could be due to recruitment via charities that include more proactive patients, who may be more concerned about their illness or are more severe.

As the clinical presentation and severity of symptoms varies between patients with BPS, the time to diagnosis has historically been slow, with time between onset of symptoms and diagnosis estimated to be 2–7 years.^33
–35 With a median time of 2 years, from onset of symptoms to diagnosis, and many patients waiting longer years, the results of this survey mirror previous findings, and indicate that there is still room for improvement in this area. However, over the past few years, the COVID-19 pandemic has dramatically changed care provision in GP practices, as well as patient behaviour, and nearly a third of patients now spend more than a year without attending a GP appointment.^36,37 Added to this, the current post-pandemic era sees the National Health Service (NHS) in crisis, with patients facing problems in accessing regular appointments and further delays in access to care, suggesting a worse, rather than improving, situation for many patients.^38,39

An interesting finding of our survey was that 50% of patients reported having been told by their HCP that, following a cystoscopy, they had ‘lesions or ulcers inside your bladder’, ‘Hunner’s lesions or ulcers’ and/or ‘glomerulations’. While this result may be subject to recall bias, it may also reflect the nature of the survey population; recruitment through patient organisations may have led to inclusion of patients with more severe disease.

In addition to HRQoL in this survey, patients were asked about their healthcare usage over the past 6 months due to their BPS; the duration aligns with the follow-up time-period in clinical trials. In line with previous findings, outside of the United Kingdom, in addition to high humanistic burden, the results from this survey identified a significant economic burden associated with healthcare-related visits from patients with BPS.^40,41 With the average total cost of treating patients, excluding drugs and treatment cost, accumulated to £860.36, the relative cost burden of BPS is not insignificant.

There is quite wide variability within the resource use data reported by patients with BPS. For example, in community healthcare, the results indicate that nine patients visited the doctor, and two patients visited the nurse 18 times or more, with one patient visiting the GP 50 times. However, visiting the GP three times a month is still possible, and the overall results highlight how often this small number of patients require GP and nurse input due to their BPS.

Estimating the prevalence of BPS is challenging because of the changes over time in how the conditions have been defined and the variable terminology used. The likely costs to be incurred by a CCG were calculated based on the mean cost of care to the respondents of the questionnaires, and a prevalence of 0.018% for patients with BPS and glomerulations or Hunner’s lesions. However, given that many patients can have BPS without Hunner’s lesions and/or glomerulations (50% in our survey), then the overall costs could potentially be higher than those calculated.

Limitations of this study include self-reporting of the diagnosis of BPS, HRQoL and resource use. Efforts were made to mitigate these by recruiting through two reputable charities, using a screener question to exclude individuals without a BPS diagnosis, and excluding those living outside the United Kingdom. While recruitment through patient organisations may have led to inclusion of patients with more severe disease, the findings from this survey highlight the significant burden BPS can have on patients’ lives.

In conclusion, this study highlights the considerable personal and social burden of BPS within the UK patient population, in addition to the substantial economic burden in terms of healthcare resource use and cost to the NHS.

Supplemental Material

sj-pdf-1-uro-10.1177_20514158231204591 – Supplemental material for Quality of life and healthcare resource use in patients with bladder pain syndrome: A survey of UK patients

Supplemental material, sj-pdf-1-uro-10.1177_20514158231204591 for Quality of life and healthcare resource use in patients with bladder pain syndrome: A survey of UK patients by Sachin Malde, Michael Ho and Jane Griffin in Journal of Clinical Urology

Footnotes

Acknowledgements

The authors acknowledge the invaluable support of Bladder Health UK and the Bladder & Bowel Community, and thank all the patients who participated in the survey. They also thank PHMR Ltd for their contribution to the design of the survey, data collection and analysis, and Paula Kidgell (PK Medical Communications Ltd) for medical writing assistance, funded by Consilient Health Ltd. These data were presented in part at the annual meeting of the British Association of Urological Surgeons, 2019.

Conflicting interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: The authors declare that MH is an employee of Consilient Health (UK) Limited; JG and SM have received consulting fees from Consilient Health (UK) Limited.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This survey was funded by Consilient Health (UK) Limited and bene-Arzneimittel GmbH.

Informed consent

An information sheet and consent form were provided to all participants, including information on the purpose of the study and how their data would be used.

Guarantor

M.H. is the guarantor of this study.

Contributorship

All authors participated in the analyses, and interpreted data. All authors reviewed and edited the manuscript and approved the final version of the manuscript.

ORCID iD

Sachin Malde

Supplemental material

Supplemental material for this article is available online.

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