ICS 2022: Development Of A Conceptual Framework And Digital Platform For The Selfmanagement Of Interstitial Cystitis: Erica (Remote Engagement With Interstitial Cystitis Aide)

(UroToday.com) This study reported on the results of an evidence-based digital platform that remotely delivers treatments including self-management strategies to female patients with Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS). The aims were 1) to develop a conceptual framework for the self-management of IC/BPS, 2) to develop a digital platform that remotely delivers first- and second-line AUA treatments of IC/BPS, and 3) to test its feasibility in this population. Symptom data were collected using the Interstitial Cystitis Symptom and Problem Index (ICSI and ICPI).

Women (n=10, median age 42 yrs) were recruited for focus groups and cognitive interviews. The median score (range) for the ICSI was 12 (4,20) and for the ICPI 10 (3, 16) indicated moderate symptom burden. Treatment related themes that emerged included:

  • Preference for the term interstitial cystitis to bladder pain syndrome
  • Motivation to learn self-management strategies for symptoms
  • Prefer an organized plan that minimizes the need to contact a provider between scheduled visits
  • Expressed feelings of isolation and lack of support, especially when initiating a new treatment
  • Concern about the side-effect of medications
  • Strong interest in integrative approaches such as diet, pelvic PT, mind-body interventions
  • Preference for remote interventions that minimize barriers (e.g., transportation, childcare, work)

Based on the above findings as well as, input from a multidisciplinary group of IC/BPS clinicians, a biopsychosocial framework for the treatment of IC/BPS emerged that informed the development of video modules on: 1) first- and second-line treatments and self-management strategies and 2) clinically validated messages offering support and guidance using a structured dialogue tree.

The video modules were designed to be delivered over a two-way texting platform that integrated with the electronic medical record and was HIPPA compliant. The final (ERICA-Education, Remote Interstitial Cystitis Aide) was a 6-week platform. Participants received weekly check-in and support from research staff.
erica platform diagram

All patients received modules on patient education, bladder retraining, and dietary triggers over two weeks. Each participant could then choose between cognitive behavioral therapy (CBT) for chronic pain, guided mindfulness practices, or pelvic floor physical therapy (PT) including myofascial trigger point release over four weeks. Four patients chose mindfulness, four chose PT, and two chose CBT. The median number of texts exchanged with each participant was 79 (range 49-120). The patient response rate was 89%, indicating high engagement. In narrative feedback, patients expressed 1) appreciation for evidence-based treatments that they could access remotely on their own schedule and 2) confidence in implementing strategies for managing their symptoms.

Qualitative comments included, “I felt like someone cared about me,” “I felt empowered,” and “I didn’t feel like I was alone in figuring this out”. No participant requested a call back from a clinician indicating low healthcare utilization.

A biopsychosocial framework is useful for developing patient-centered treatments that promote the self-management of IC/BPS symptoms as these patients are highly motivated to self-manage their condition with support from health care providers. IC/BPS patients prefer organized treatment plans that allow them to choose treatments that they can access remotely in their own time. Low-cost text messaging allows the delivery of treatments using platforms that integrate with electronic medical records while protecting sensitive health information. When supported through a digital platform, few patients called their healthcare providers.

Presented by: Lily Arya, MD, MS, University of Pennsylvania, Philadelphia, PA

Written by: Diane Newman, DNP, CRNP, FAAN, BCB-PMD, Urologic Nurse Practitioner, Adjunct Professor of Urology in Surgery, Senior Research Investigator, Perelman School of Medicine, University of Pennsylvania during the International Continence Society Annual Meeting, September 7-10, 2022, Vienna, Austria.