An extended patient survey was conducted by a Dutch Painful Bladder Syndrome/Interstitial Cystitis (PBS/IC) patient association with the aim to 1) focus better on patient’s needs, 2) obtain data to improve awareness amongst clinicians and achieve more patient-centred clinical management, and 3) improve the association’s public lobbying function.

In 2019, a patient survey was constructed using Survey-monkey amongst members of the patient association. Topics highlighted in the survey were defined by a stakeholder group of patients, clinical experts and independent methodology experts. Questions varied from epidemiology, diagnosis, quality of life (QoL), to therapy satisfaction. This abstract focusses on QoL results of the questionnaire. Impact of the disease on daily life was assessed with a 6-point Likert scale. Subdomains of QoL such as sleep, work/school, sexuality, partner relationship, social contacts, mobility, housing/accommodation were rated with a 10-point scale (1-10, with 10 being extremely impaired). Other factors evaluated were: coping with the disease, duration of disease, age and gender. Statistical analyses included Pearson correlation tests using IBM SPSS26 software.

234 people responded to the survey of which 91% had a diagnosis of PBS/IC (confirmed by urologist in 92%). The impact of the disease on the patient’s life was rated as ‘very severe’ (46%) to ‘severe’ (33%). Results for coping with the PBS/IC demonstrated that 10% were ‘overwhelmed’ by their disease, 24% found it ‘difficult to cope’ and 52% were ‘coping/dealing’ with the disease. Only 13% reported that they had ‘no or limited complaints’ of PBS/IC. Coping was correlated to all domains of QoL (p<0.05), duration of disease (p=0.025), but not to age (p=0.063).

Results from the subdomains of QoL (rated on 0-10 scale) showed in decreasing order that patients were mostly impaired by: sleep problems (av. 7.8), work/school (7.2), sexuality (7.0), mobility (6.7), social contacts (6.6), and partner relationship (5.7). Sleep impairment was correlated to all subdomains of QoL (all p<0.000), but not with age or duration of disease. Age did not correlate to impact of the disease on daily life (p=0.177) or different domains of QoL (incl. sexuality and sleep), except work/study (p<0.000).

Survey confirms the clear impact that PBS/IC has on QoL. There is a relatively high percentage (34%) of patients that are poorly coping with PBS/IC. Coping was not correlated with duration of having PBS/IC. These results therefore indicate a poor general outcome of clinical care from a patient’s perspective.

Results from this study further show the negative impact that PBS/IC has on QoL subdomains such as sleep, sexuality, work and social relations. Noteworthy is the observation that sleep impairment is the most dominant QoL determinant. Sexuality problems were not related to age in this study. Results are prone to bias due to potential overreporting by patients with severe symptoms.

Patient surveys are a good tool for patient associations and physicians to identify key priorities as defined by patients. QoL and coping problems are persistent regardless of the duration of having PBS/IC. These results should trigger healthcare providers to focus on problems such as sleeping disorders, social impairment and work related problems to keep striving for better QoL prospects in their patients. Sexuality problems should be addressed in all age groups.