Perspectives of Patients With Interstitial Cystitis/Bladder Pain Syndrome: Benefits and Drawbacks of Self-Administration of Intravesical Therapy

Introduction: Teaching patients with interstitial cystitis/bladder pain syndrome (IC/BPS) how to perform self-instillation of intravesical therapies has become common in some clinical practices. The pros and cons of self-instillation from the patient perspective have not yet been characterized. Methods: Patients with IC/BPS who underwent intravesical instillation therapy were enrolled in 2 study groups: self-instillation performers and office-instillation recipients. Questionnaires were developed to assess attitudes toward intravesical therapy, with answers graded on a 5-point Likert Scale. Differences between groups were assessed with the Mann-Whitney U test. Results: Twenty-two patients were enrolled, with 11 in each arm. There were no significant differences in age, sex, ethnicity, insurance type, or presence of Hunner lesions between groups ( P > .05). There were no differences in perceived ability to afford self-instillation or insurance coverage of materials ( P > .05). The self-instillation group endorsed better pain control (average score = 4.91 ± 0.30), saved time during treatment (4.82 ± 0.41), had more free time overall (4.82 ± 0.41), were feeling greater control over their body (4.73 ± 0.47), had increased autonomy (4.73 ± 0.47), and had greater ability to work/perform daily activities (4.73 ± 0.47). The office-instillation group endorsed concern over ability to administer therapy correctly (4.56 ± 1.21), lack of help (4.27 ± 1.01), pain (4.18 ± 1.01), and concern over catheter usage (4.09 ± 1.22) as barriers to performing self-instillation. Conclusions: Patients experienced a variety of benefits from self-instillation, including more free time and autonomy. Office-instillation patients endorsed fear of pain and lack of experience as barriers to pursuing self-instillation. Cost did not influence treatment choice.