A panel of experts recently created a set of 15 recommendations for improving patient-provider interactions during visits for primary biliary cholangitis (PBC). Their findings were published in Hepatology Communications.
The study recruited 151 health care professionals who completed a survey on best practice recommendations for the disease. The panel also included nine individuals with expertise in PBC, including six doctors, two patient advocates and a nurse practitioner.
After completing the online survey, the group met to discuss results and vote on guidelines. They included all recommendations with a consensus of at least 75% in the final report.
The first theme assessed in the survey involved discussions between patients and their providers. All experts agreed that initial consultations should take place in person, and that physicians should explain the stage of disease, symptoms patients may experience and treatment options.
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Additionally, the majority of providers felt that doctors should discuss the patient’s prognosis, the importance of following their treatment regimen, comorbidities they could experience and what their next steps should be. Of note, only 28% of respondents had directed their patients to support groups during their first visit.
The second theme pertained to ongoing disease management. Although an exact timeline for follow-up was not agreed on, 78% felt that follow-up should occur at least every six months. However, this might change depending on patient characteristics, many said.
Respondents also recommended that symptoms related to itching and fatigue should be discussed during consultations. Though they agreed that sicca syndrome — dryness in the eyes and mouth — should be discussed, fewer than one-third reported doing so. The patient advocates added that physicians should discuss sleep difficulties during appointments, as well.
When it came to measuring symptoms of PBC using numerical scores, only 50% reported using these tools, with 54% being familiar with them. Some physicians preferred more qualitative measures, while others simply felt these scores were not adequate measurements.
In terms of wider support, 75% of doctors felt they could treat PBC on their own. Even so, 89% agreed that physicians should refer their patients to specialists when they are unable to treat certain symptoms. Also, 78% felt that patients should have access to centers that specialize in PBC.
“These consensus-based recommendations are a resource for providers to help address patient needs around symptom burden, referrals to specialists other than hepatologists, and connection to patient support organizations,” the authors concluded.
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