How a Patient’s Self-Advocacy Changed Her Center’s MRCP Protocols

PSC is a rare disease, and some medical providers have little experience with it, so patients often find they must advocate for the care they need. When Jennifer Peck, who has been living with PSC for seven years, learned that her annual magnetic resonance cholangiopancreatography (MRCP) test had been performed using a different technique than usual, she was perplexed but determined to find out why.

MRCPs are imaging tests that examine the liver, pancreas, gallbladder, and bile ducts and are recommended by experts for annual PSC surveillance. A radiographer images numerous small sections, or slices, of the target area using either a “thick slice” or “thin slice” protocol. Thick slices capture a larger area with each image and are preferable for some situations, but thin slices are more detailed and more useful for evaluating bile ducts and catching small abnormalities in livers affected by PSC.

Jennifer, an active member of the PSC Partners community, gets her care at a top East Coast transplant center, where her prior MRCPs used the preferred thin-slice technique. She was surprised that her recent MRCP was performed using the thick-slice protocol, which meant that the radiologist was unable to compare the results to her prior MRCPs. Given that her medical history includes strictures and a lesion that required a liver resection, Jennifer was concerned about this.

Though her doctor was less concerned than she was about the protocol change, Jennifer remained uneasy. She researched and found that the chief of the abdominal imaging division would be the best person to contact for more information. A call was scheduled to address her concerns. Afterward, Jennifer said she was “beyond excited and happy” with how it went. “He was very receptive,” she said. He told her that the change in protocol to thick-slice imaging was due to a quality improvement initiative aimed at reducing scheduling delays within the center’s network of imaging facilities. Thick-slice MRCPs take less time to perform.

Jennifer’s knowledge of PSC and the information she brought to the chief’s attention caused him to reconsider the new protocol. After reviewing the relevant professional guidelines for PSC care, he realized that she had valid concerns. He reconvened the quality improvement committee and recommended that the thin-slice MRCP protocol be reinstated for PSC and other conditions warranting it.

The committee accepted his recommendation, and the center will use the thin-slice MRCP protocol for PSC patients going forward. Jennifer was offered and received a thin-slice MRCP at no additional cost. “I am thankful that we have something consistent to monitor now,” she said.

Jennifer shared her story in the PSC Partners Facebook support groups, and numerous individuals replied to applaud her actions and to say that she inspired them to ask their providers for details about their own MRCPs.

“It is so important that we always advocate for ourselves,” Jennifer said, “Ask the questions and do your research.”