Distressing PSC symptoms fit profiles that could guide treatment

Donna Evon, (University of North Carolina School of Medicine, Chapel Hill, USA) told medwireNews that their findings are not necessarily representative of the overall PSC population, as they studied only symptomatic individuals, but that the results nevertheless underline the need for psychological help for patients.

She said, however, that there is currently “no good nonpharmacological symptom management in this population.” She and her colleagues are therefore developing a mind and body wellness program for PSC and primary biliary cholangitis, in which virtual groups, led by psychologists, would come together to practice cognitive behavioral skills, coping, and symptom management.

From that, they aim to build a network across the USA and Canada to empower trained therapists to identify patients, including via patient advocacy organizations, so that patients can have “a place to land” and meet others with their disease.

The researchers say that the spectrum and burden of symptoms in PSC is “poorly understood,” and that a comprehensive understanding of the symptomatic landscape of the conditions is “essential to improve healthcare and identify treatments to ameliorate symptoms.”

To describe the range of symptoms, they launched the PSC Symptom Assessment Project, with the current analysis focusing on the initial screening phase. The study included patients aged at least 18 years who had experienced symptomatic PSC in the last year, who were not on a waitlist for liver transplant, and who had not previously been a transplant recipient.

The participants completed a phone-based survey to determine the prevalence of 13 PSC symptoms in the previous month, alongside key symptom attributes, sociodemographic and clinical data, and their health status, as assessed using the PROMIS Global Health measure.

A total of 126 patients, with a mean age of 47 years, took part in the study, 75% of whom were women. Inflammatory bowel disease (IBD) was present in 59% of patients, while 39% had cirrhosis. The majority (75%) of patients were taking ursodeoxycholic acid (UDCA), and 57% had a history of cholangitis attacks.

The survey results showed that 83% of respondents had experienced fatigue in the previous month, while 73% reported drowsiness. Anxiety, liver pain, cognitive impairment, sleep disturbance, and itch were reported by more than 60% of patients.

Latent class analysis suggested that the patients could be divided into those with “low symptoms,” representing 22% of patients. A further 21% were classified as having “moderate symptoms,” 39% were deemed “moderate plus distressed,” and 18% had “high symptoms.”

The high symptom profile had the highest proportion of women (73%) and patients with cirrhosis (48%), and the lowest proportion of patients taking UDCA (33%) or those with IBD (46%). A history of cholangitis attacks/PSC flares was more common in the low symptom group (74%). On multivariate analysis, only a history of cholangitis attacks was significantly associated with the profiles.

The researchers found that moving from low to high symptom profiles was associated with a statistically and clinically significant trend for worsening physical and mental health T-scores. After adjusting for age, sex, cirrhosis, time since PSC diagnosis, UDCA use, and history of cholangitis attacks, there were no differences between patients with and without IBD in terms of total symptom burden and global mental and physical health.