Interstitial cystitis patients reported that telemedicine sessions provided substantial benefits.

Patients with interstitial cystitis who took part in personalized online cognitive behavior therapy (CBT) sessions were subsequently better able to cope with this painful chronic condition.

Results from a large trial published in Pain showed that the patients improved skills in areas such as sleep, pain management, handling of difficult emotions, developing intimacy and effective communication. They also learned how to integrate these skills.

“Cognitive behavioral therapy provides these patients with a set of self-management capabilities,” said Roger M. Dmochowski, M.D., professor of urology and surgery in the Department of Urology at Vanderbilt University Medical Center. “They not only suppress their symptoms, but they actually can gain skills to help them manage through the escalation of symptoms and carry on. It helps build resilience.”

Large, Well-Controlled Study

Conducted between July 2020 and December 2021, this study is one of several  NIH-funded trials incorporating psychological interventions to be conducted at Vanderbilt’s pelvic pain clinic in efforts to advance treatment for interstitial cystitis and other debilitating pelvic disorders. Lindsey McKernan, Ph.D., licensed clinical psychologist at Vanderbilt’s Osher Center for Integrative Medicine, has been a leader in these efforts.

The study published in Pain is the first large-scale, randomized controlled trial of a comprehensive psychological intervention for interstitial cystitis/bladder pain syndrome, the authors noted.

Personalized Care

The study involved 78 adult participants ages 18 to 74. Fifty-two of them participated in the CBT sessions. The therapy consisted of eight 45-minute online CBT sessions with a licensed mental health professional.

Twenty-six participants were assigned to the control arm, considered an “active attention control,” which required patients to monitor their symptoms, flare patterns and other fluctuations in health.

“The CBT intervention involved listening sessions that gave patients the opportunity to build coping skills in an incremental manner, everything from using breathing therapy to self-hypnosis in appropriately selected and willing patients.” Dmochowski said In effect, patients in the control arm had a similar degree of interaction but the focus was not on aspects of their chronic condition.

During the first session, the therapist worked with each patient to identify the top three areas the patients wanted to address.

Physical Symptoms and Global Change

All participants completed three assessments of their urologic symptoms and pain, their distress levels, and their overall quality of life – once before the trial began, again immediately afterwards, and finally at a three-month follow-up.

The primary outcome measure was the patient’s genitourinary symptoms as measured by the Genitourinary Pain Index (GUPI). The researchers also got a secondary measure of improvement by obtaining three scores on the Patient Global Impression of Change (PGIC) scale.

Patients in both arms reported significant, similar reductions in genitourinary pain.

“However, the CBT group had significantly great improvement in the Patient Global Impression of Change scores, and was significantly more likely to be treatment responders, with a PGIC great than or equal to six (37percent versus eight percent, (P = 0.019), with a large relative effect size,” the authors wrote.

Mental Health Support Challenging

 Usually, patients with these conditions turn to gynecologists or urologists for help. Urology and gynecology are essentially surgical specialties, Dmochowski explained.

“Clinicians in those fields are trained to operate, and they don’t tend to think about the long-term need for management, Dmochowski said. “They usually don’t have the organizational or operational capabilities to provide mental health care. It requires a real paradigm shift.”

Extremely Taxing Condition

“Pelvic pain and interstitial cystitis have an immense impact on patients, not only on their physical concept but also on their psychological perception of themselves,” Dmochowski said. Additionally, patients with urological problems often suffer from associated rectal and gastrointestinal dysfunction.

“Patients often suffer with high levels of depression, anxiety, posttraumatic stress symptoms, and in some cases, suicidality. Stress alone can both trigger and perpetuate symptom exacerbations.”

The article states: “Patients often suffer with high levels of depression, anxiety, posttraumatic stress symptoms, and in some cases, suicidality. Stress alone can both trigger and perpetuate symptom exacerbations.”

Notably, a history of extreme psychological stress, especially sexual abuse, is common in patients living with this condition, Dmochowski said.

Today’s Treatments Are Inadequate

 “We have various drugs and interventions that we can use, that have some degree of merit,” said Dmochowski, explaining that most offer only partial benefit or relief that waxes and wanes.  New approaches are clearly needed, both in the physical realm and in terms of mental health interventions.

Pentosan polysulfate sodium (Elmiron) is the only approved treatment and can have severe side effects, including vision loss or blindness, especially when used for long periods. Dmochowski described its overall effect as marginal, at best.

“The value of CBT is helping a person cope with the condition and defocus from it so they can lead a relatively less impacted life.”

“The vision loss is a risk associated with length of use,” he added. “We’re faced with deciding about giving a patient a drug that may or may not be valuable, with possible interruption to vision, and this is all playing out in a world of class action litigation.

“Years back, people started to realize that these patients required multidisciplinary management. The value of CBT is helping a person cope with the condition and defocus from it, so they can lead a relatively less impacted life.”

About the Expert

Roger Dmochowski, M.D.

Roger R. Dmochowski, M.D., M.M.H.C., is a professor of urologic surgery, associate surgeon in chief, associate chief of staff and vice chair for faculty affairs at Vanderbilt University Medical Center. He is also serving as the current president of the American Board of Urology.