Recap – West Coast Regional Cancer Registrars Conference


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Recap – West Coast Regional Cancer Registrars Conference

Cancer Registrars Regional Meeting

August 8 – 10, 2018

Burbank, CA

Submitted by Kim Rodriguez, AAS, RHIT, CTR –  I had the privilege of attending the first ever, bi-annual West Coast Regional Cancer Registrars Conference, August 8 – 10, 2018 where registrars from California, Oregon and Washington gathered for a two-day educational conference at the Marriott Hotel in Burbank, CA.

The conference was coordinated with key leadership from the California Cancer Registrars Association, Oregon Cancer Registrars Association, and Washington State Tumor Registrars Association.  Attendees came from as far as Alaska!

It was wonderful to be able to network with local registrars, connect with other Registry Partners’ team members, and it was great to absorb the information provided in the well-rounded educational sessions.  Unfortunately, there was no reprieve from the heat, as Burbank is warm this time of year.

Dr. Frederick Greene began the second day of the conference with Commission on Cancer Standards: What Registrars Need To Know About Community Outreach & Patient-Centered Standards.  He showed a slide outlining the five groups that work in collaboration with the Commission on Cancer (CoC), one of which was the National Cancer Registrars Association (NCRA). It was nice to see a visual showing a break down of these key groups all working together. Dr. Greene took us through the history and growth of the CoC, which began by focusing on structure, then processes, and now in this third evolution … outcomes.  

Dr. Greene shared one of the most common deficiencies for standard 1.8, which is the lack of evaluating the effectiveness of prevention and screening programs.  He shared the components necessary to successfully document compliance with this standard and provided many excellent examples to follow. He also reviewed standard 3.1, the patient navigation process and identifying barriers to care in order to facilitate timely access to clinical services and resources; Standard 3.2, psychosocial distress screenings and Standard 3.3, survivorship care plans. All proved to be hot topics when Dr. Greene opened the floor up for questions from the attendees.

Dr. Greene spoke a second time later in the day, discussing the release of the highly-anticipated STORE (Standards for Oncology Registry Entry) manual.  Previously known as the FORDS (Facility Oncology Registry Data Standards) manual. The new STORE manual is utilized by both accredited and non-accredited cancer programs for shared collection and reporting of cancers to the National Cancer Database (NCDB), National Program of Cancer Registries (NPCR) and the Surveillance, Epidemiology and End Results Program (SEER).  

The new STORE manual:

  • Realigns data collection with contemporary multidisciplinary medical practice
  • Enables physicians and researchers to analyze the entire continuum of care

A total of 18 data items were deleted from the new STORE manual but 31 new radiation oncology data items were added. There was discussion on creating and maintaining a standardized digital synoptic radiation therapy summary for consistency.  We heard about the PPS (prospective payment system), the lack of reliable recurrence information for registries and the National Cancer Data Base (NCDB). We also discussed results from the previous PCORI (patient centered outcomes) studies and how it helped with decisions regarding criteria in the STORE manual.  At the time of the conference, we were still anticipating the final release of STORE, and it finally became available on August 15, 2018.

Dr. Babak Eghbalieh was such an energetic and charismatic speaker!  I did not know how fun it could be to listen to a surgeon speak about AJCC 8th edition staging for pancreatic cancer.  As registrars we know that the location of the primary cancer can severely impact prognosis and we walked through the various exocrine and endocrine locations.  Many are not aware that diagnostic imaging with the pancreatic CT protocol is extremely helpful and provides up to 80% of information on a patient’s potential for resectability.  

Endoscopic ultrasound (EUS) is excellent for evaluating pancreatic tumors less than 2 cm.  Our surgeon was very emphatic to state that in 2018, CT-guided biopsy of the pancreas should not be done unless you cannot access it by EUS, but that biopsy is not necessary unless it is a large tumor or benign.  While Dr. Eghbalieh is an experienced and trained surgeon, he does state that resectability is subjective and based on each individual surgeon’s ability. If you ever have the opportunity to hear Dr. Eghbalieh speak,take advantage of it. His knowledge of the pancreas alone is astounding.

Donna Hansen of the California Cancer Registry spoke on the 2018 changes in relation to the extent of disease (EOD), new grade coding rules, and site-specific data items (SSDI).  These changes are effective for cases diagnosed on or after January 1, 2018 and not based on the date the case was abstracted. A great tip that Ms. Hansen shared was that if registrars utilize the SEER*RSA website, it is inclusive and has just about all these resources in one central location, rather than having to click on various websites to view the EOD, grade and SSDI.  

The grade table has been restructured, and is a combination of numeric and alphabetic codes within the same table, based on the terminology used to describe the grade.  In order to determine if you are collecting SSF’s (site specific fields) or SSDI’s (site specific data items), the criteria is simple. Cases diagnosed before January 1, 2018 would use SSF’s, and cases diagnosed after January 1, 2018 would use SSDI’s.  Unlike with the previous SSF’s that were identified by a number, the new SSDI’s are actually named after the specific data item, like prostate specific antigen (PSA). Also new with the SSDI’s, we have the ability to code up to 7 characters, rather than converting to a shortened response, we can record actual lab values.  

The most applicable quote, in tune with all the changes registrars are facing this year was at the end of one of Dr. Greene’s presentations: Machiavelli said, “It ought to be remembered that there is nothing more difficult to take in hand, more perilous to conduct, or more uncertain in its success, than to take the lead in the introduction of a new order of things”.

Fellow registrars, it has been a tough and challenging year dealing with a new staging manual, new STORE manual, and various other standard setters releasing changes.  But I am confident as registrars, we will pull together and meet these challenges head on! Thank you to all the leaders from each of the state conferences for working to put together such a well thought out event.  We look forward to next year’s California Cancer Registrar’s state conference and the 2020 regional conference in Portland, Oregon!

Photo by P. Wei on iStock