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Missouri Cancer Registry
Low Volume Facility Manual
Effective
01/01/2011
Contents
INTRODUCTION ............................................................................................................................................. 3
Role of Hospitals ....................................................................................................................................... 3
Role of Missouri Cancer Registry .............................................................................................................. 3
Confidentiality ........................................................................................................................................... 3
Audits ........................................................................................................................................................ 4
GENERAL INSTRUCTIONS .............................................................................................................................. 4
Important Items to Remember ................................................................................................................. 4
Chart Submission ...................................................................................................................................... 4
Data Security ............................................................................................................................................. 5
Delinquency .............................................................................................................................................. 6
Missouri Cancer Registry Website ............................................................................................................ 6
REPORTABILITY ............................................................................................................................................. 6
ICD-9-CM Codes ........................................................................................................................................ 6
Inclusions .................................................................................................................................................. 6
Exclusions .................................................................................................................................................. 6
Ambiguous Terminology ........................................................................................................................... 7
CASE FINDING ............................................................................................................................................... 8
Medical Record Disease Index .................................................................................................................. 8
Resources .................................................................................................................................................. 8
Documents to Copy................................................................................................................................... 8
APPENDIX .................................................................................................................................................... 10
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INTRODUCTION
Role of Hospitals
The primary source for obtaining epidemiological information is the hospital cancer registry. A registry is
responsible for providing a listing of cancer patients and pertinent information regarding their
diagnoses. A registry may be small or large, and the extent of information submitted varies, depending
on hospital size and the reporting methods for each facility. Some hospitals have had their own
registries for years in accordance with the American College of Surgeons-Commission on Cancer (ACoSCoC) requirements, while others have limited registries and collect or provide only the state mandated
reporting requirements.
Role of Missouri Cancer Registry
MCR’s role is to gather information from hospitals and other sources to monitor the incidence of cancer
in the state for epidemiological research that may be used to develop and evaluate cancer prevention
and control activities in Missouri. The data is received electronically from hospitals that have on-site or
contract registrars. Facilities without a registrar having an annual caseload of 75 or fewer cases are
called low-volume facilities. Information from these facilities is accepted in paper chart form, and MCR
staff complete the abstracts. The data collected is invaluable in targeting risk factors in certain
populations, studying the impact of environmental factors, identifying ethnic and social variations and
evaluating the effectiveness of state cancer control programs.
The MCR staff is available to answer registry-related questions and to provide workshops, educational
presentations and one-on-one training. Please refer to the MCR website at http://mcr.umh.edu/ for
complete information.
Confidentiality
Per Missouri statute (192.655, RSMo 1999), the “department of health shall protect the identity of the
patient, physician, health care provider, hospital, pathology laboratory, ambulatory surgical center,
residential care facilities I or II, intermediate care facilities or skilled nursing facilities, and free-standing
cancer clinic or treatment center… and that such identity shall not be revealed except…only upon
written consent…” This confidentiality provision is necessary to assure all reporting entities that neither
their identity nor the confidential data they submit will be subject to unauthorized release.
In addition, MCR employees are required to sign confidentiality agreements and follow confidentiality
procedures set forth in the Missouri Cancer Registry Policy and Procedure Manual. These regulations
include the use of locked cabinets for confidential data, employing secure work station practices,
adhering to procedures for handling requests for data, etc. MCR employees also recognize the
importance of compliance with ARRA HITECH provisions.
Note: The Health Insurance Portability and Accountability Act known as HIPAA allows for the reporting
of identifiable cancer data to public health entities. Because the Missouri Cancer Registry falls under the
definition of a public health authority; HIPAA allows your facility to continue reporting cancer incidence
data in compliance with state statutes (192.650-192.657 RSMo) and regulations (19 CSR 70-21). Written
informed consent from each cancer patient reported to public health entities is not required under
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HIPAA nor is a Business Associate Agreement required; rather, hospitals must simply document that
reporting has occurred
Audits
MCR periodically conducts case completeness and data quality audits as required by the NPCR. The
intent of the audits is to assist hospitals with case finding and abstracting issues to ensure complete,
high quality data is submitted to MCR. Each Missouri hospital is audited every five years. After
completion of the audits, detailed summary reports are prepared and shared with the hospital registrar
and other related hospital staff. Per NPCR guidelines, the acceptable accuracy rate for all audits is 95 –
100%.
Standard Case finding: At the present time for Low Volume Facilities, medical records disease indices
(MRDIs) are matched to the MCR database. Any non-matched cases are returned to the registrar or
hospital contact person for resolution.
CDC National Program of Cancer Registry (NPCR) Audits: Case completeness and data quality audits are
periodically conducted by NPCR on the Missouri Cancer Registry data. While a few hospitals are
requested to provide data, the audits are conducted on MCR, not on the individual facilities. These
audits provide an opportunity for NPCR to assess the completeness and quality of the data after it has
gone through MCR’s quality assurance process. The audit feedback may be instrumental in improving
the quality of the data as well as MCR’s quality assurance processes.
GENERAL INSTRUCTIONS
Important Items to Remember
Reporting cancer cases to MCR can be confusing. When unplanned, the activity can take a significant
amount of time, with results that may not be the most effective. To make the process less timeconsuming and more efficient, here are a few suggestions:
 Designate a specific person to perform the case finding.
 Allow adequate time to identify cases, copy and submit charts.
 Conduct case finding activities on a regular basis at least quarterly.
 Collaborate with the pathology laboratory and other departments/sources that may provide
tumor information.
 Send only charts for the specific malignances listed for patients diagnosed and/or treated for
cancer at your facility. (See the Reportablility Section of the manual)
All reportable cancer cases diagnosed and/or treated in your facility after August 28, 1984 must be
reported to MCR.
Chart Submission
You are required to submit your cancer cases to us at a minimum every quarter. Please see Appendix
for the Low Volume Facility submission deadlines. Every quarter you should send a transmittal form, the
annotated MRDI and charts. If the MRDI review results in no reportable cases, you must still submit the
MRDI and transmittal form, explaining the reason for no charts. To send your charts securely please
refer to the Data Security Section of the manual.
During routine case finding, registrars can assist themselves and MCR by maintaining a non-reportable
list (patient name, date of birth or social security number, ICD-9-CM code of the non-reportable
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malignancy, date seen and reason not reported). Another method is to note the reason a case is nonreportable on the registrar’s case finding source, such as the Medical Records Disease Index (MRDI). The
listing or notations will help registrars avoid duplication of efforts related to case finding and
identification of non-reportable cases in the audit process. For example, you might note “case not
reportable due to basal cell cancer of the skin,” etc. That way if we have questions about a particular
patient you may quickly review your information rather than pulling the chart.
We also recommend that you check your facility’s account in Web Plus for a list of patients that have
been abstracted from the charts previously submitted (to avoid duplication). You can copy these logs
and paste in an excel sheet.
Data Security
Protected Health Information (PHI) and other confidential data MUST NOT be included in e-mails to
MCR. Do not include information either in the text of the e-mail or as an attachment. If this happens,
MCR staff will alert the registrar, so that the information can be deleted from all e-mails.
Confidential information on individual cases may be uploaded using the Web Plus non-NAACCR layout
function, or it may be transmitted via fax if only a small number of pages (less than 20) are to be
submitted. The MCR fax machine is in a locked office, accessible only to MCR personnel. The office is
secure 24 hours a day. MCR’s fax number is 573-884-9655.
In order to protect and properly handle all packages, particularly those containing confidential patient
information, all documents must be double-wrapped, using a tear-resistant envelope as the outer layer,
regardless of the submission method. MCR is not responsible for torn or lost packages containing
patient information.
The U.S. Postal Service provides different levels of service/security via Registered Mail™ or Certified
Mail™. If you plan on sending PHI through the U.S. Postal Service, you must use MCR’s post office box
address:
Missouri Cancer Registry
PO Box 718
Columbia, MO 65205
For Federal Express, UPS, Airborne Express or other secure courier service, MCR’s street address must
be used. You may also want to explore the e-mail tracking and notification features that the courier of
choice offers.
Missouri Cancer Registry
University of Missouri
401 Clark Hall
Columbia, MO 65211
While the above-listed methods of submitting protected health information are considered secure, we
recommend you contact the addressee at MCR so that she/he knows to be on the alert for a fax, letter
or package. Be sure to track a package to ensure that it has reached its destination. We also encourage
you to keep a listing of patient names included in the mailing, in the event there is a problem.
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Delinquency
We will send out a mid-reporting year letter that will serve as your notice that you have or have not
been delinquent in your reporting. If you have not submitted 50% of cases by that time, you will have
60 days from the date of the letter to respond and take corrective action. If that deadline is missed we
will send a letter to your supervisor. They will be given 30 days from the date of that letter to respond
and take corrective action. If there is no response and corrective action after this 90-day period our
Operations Director will send a letter to your hospital Administrator/CEO.
Missouri Cancer Registry Website
The Missouri Cancer Registry Website, http://mcr.umh.edu, offers a lot of information. On the website
you will find the specific cancer-reporting statues and regulations, questions in regards to HIPAA, as well
as a link to Web Plus. Although we try to communicate with you in regards to changes, updates, and
training opportunities the website would contain the most up to date information in these areas.
REPORTABILITY
ICD-9-CM Codes
It is the facilities responsibility to review cases for reportability. Submitting batches of charts that may or
may not meet the reporting guidelines is strongly discouraged. Investing time up-front for case finding
will reduce the amount of paper used and the time involved in copying and mailing non-relevant
documents for submission, which will also lower your hospital’s costs.
For reportability, MCR utilizes ICD-9 codes as required by the National Program of Cancer Registries
(NPCR) and the North American Association of Central Cancer Registries (NAACCR). See Appendix These
are the codes used by central registries throughout the US and Canada. The ICD-9 list may change
annually. Please refer to the MCR website for the most up to date information, http://mcr.umh.edu.
While the ICD-9CM list mainly includes malignancies, there are a few inclusions and exclusions you need
to know.
Inclusions
Beginning with cases diagnosed in 2004, benign brain tumors are required to be reported to MCR.
ICD-9-CM codes for benign brain tumors that must be reported are:
225.0 – 225.4 (fro benign Meninges and Brain)
225.8 – 225.9 (for Spinal Cord, Cranial Nerves and other)
227.3 – 227.4 (for other endocrine glands, etc)
Other inclusions include intraepithelial neoplasia for certain sites. These sites are by ICD-9-CM codes:
154.2 – 154.3 AIN (anal)
184.0 – 184.9 Female Genital Organs including VIN (vulvar) and VAIN (vaginal)
187.1 – 187.9 Male Genital Organs
Exclusions
Basal Cell Carcinoma (BCC) and Squamous Cell Carcinoma (SCC) of the skin are not required to be
reported. These include ICD-9CM codes:
173.3 – 173.9 skin cancers
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Ambiguous Terminology
A patient has a reportable malignancy when the diagnosis is stated by a recognized medical Practitioner.
Some specific ambiguous terms that are used by physicians constitute a reportable diagnosis, while
others do not. This may occur in the absence of tissue (histology) or fluid (cytology) diagnosis, as well as
when there is a cytologic/histologic diagnosis. Some malignancies may be first diagnosed
radiographically with ambiguous terms. These terms may originate from any source document such as
pathology, radiology, discharge summary and clinical reports and may lead to minor problems during
case finding because some ambiguous terms for ICD-9 coding may not mean the same thing regarding
reporting status. For example, ‘possible’ cancer may be coded as a malignancy by ICD-9 coders but
‘possible’ is a non-reportable ambiguous term for cancer reporting. When reviewing the medical record
if ambiguous terminology is used in the diagnosis, refer to the following lists to determine reporting
status. For a cancer case to be reportable, the ambiguous term must always include a reference to the
reportable diagnosis being described, eg., favors carcinoma or suspicious for malignancy.
Ambiguous Terms That Constitute a Diagnosis
Apparent (ly)
Most likely
Appears
Presumed
Comparable with
Probable
Compatible with
Suspect (ed)
Consistent with
Suspicious (for)
Favors
Typical of
Neoplasm*
Tumor*
*additional terms for nonmalignant primary intracranial and central nervous system tumors only
Exception: Do not report cytology suspicious for malignancy, unless confirmed by biopsy or a statement
by the physician that the cases supports a malignant diagnosis.
Cannot be ruled out
Equivocal
Possible
Potentially malignant
Ambiguous Terms That Do NOT Constitute a Diagnosis
Questionable
Rule Out
Suggests
Worrisome
Note: Terms that designate a reportable case must always include a reference to malignancy, cancer or
other similar term, except when the diagnosis is for a benign primary tumor of the intracranial region,
the brain or the central nervous system. For example a radiology report may refer to a ‘neoplasm in the
brain. This would be reportable for that site.
Examples:
CT scan results state “cancer cannot be ruled out.” – This is NOT reportable.
CT scan results state “probable cancer.” – This is reportable.
Discharge summary and X-ray results report “CT of the chest compatible with carcinoma of the left lung.
Although there may be no further work-up or treatment, the case is radiographically diagnosed and is
reportable.
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Barium enema (BE) reveals a suspicious sigmoid mass. Colonoscopy reveals a sigmoid mass,
“questionable malignant neoplasm.”- This case is NOT reportable.
CASE FINDING
Medical Record Disease Index
The Medical Record Disease Index or MRDI is one of the most complete sources for locating reportable
cases. You will need to work with your IT department to create a MRDI to be used for case finding. The
MRDI should include cases from the following sources: inpatients, outpatients, ambulatory surgery,
hospital outpatient and clinic visits for chemotherapy, radiotherapy or other definitive cancer
treatment. Generate the index in an Excel file and run as a single report, rather than individual monthly
reports or reports based on patient class. The format must include codes to indentify all potential cases
based on the ICD-9-CM reportable list. For each admission of the patient, include the top six ICD-9
codes and include procedure codes listing them in the order in which they were originally coded. Also
include the patient last name, first name, date of birth, social security number, admission and discharge
dates, admission type/service code, and medical record number. This needs to be sorted alphabetically
by last name. IMPORTANT: MRDIs sorted other than alphabetically will not be acceptable. If your
departmental program does not have the capability to generate reports in Excel, collaborate with your
IT department to run the report in the requested format. We are available to speak directly to the IT
staff to answer any questions.
Resources
There are other resources at your facility that will be of assistance to you in your case finding. You can
collaborate with staff in the pathology department to share a list or copies of path reports that mention
a reportable diagnosis and or treatment for malignancies. You can also consult with your radiology
departs on mammograms, chest x-rays, CT scans, MRIs and ultrasounds for tests that may contain
ambiguous terminology that constitute a reportable diagnosis. You can also run a report of patients
receiving specialty procedures such as colonoscopies, bronchoscopies or orchiectomies. Other sources
for locating potential cases include outpatient listings, same-day surgery center lists, and other satellite
clinics.
Documents to Copy
Charts from visits in which the patient was diagnosed and/or treated for cancer should be sent. It is
important when submitting documents that the pertinent information pertaining to the cancer is what is
being sent. Please review the Documents to Photocopy List in Appendix for a list of the documents that
need to be copied and submitted to us. Please remember not all the documents mentioned will apply
to every cancer case.
DEATH CLEARANCE
Death Clearance (DC) is a process of matching registered deaths in a population against reportable
conditions in the registry database to identify cancer cases that would otherwise not have been
reported. For each case not found in the registry database, death clearance procedures require followback to the facility listed on the death certificate to obtain more complete diagnosis and/or treatment
details. For this process your facility will be notified by email that the DC process has begun. By checking
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your Web Plus account you will see if you have cases to process. If so you need to review the medical
records to determine if you have information in regards to a diagnosis date, treatment details or other
information as to where they may have been diagnosed or treated. Please note: even though you will
receive the email every year stating that the DC process has begun it does not mean that you have
cases to process. You must check Web Plus to be sure. For more information on the DC process please
visit the Web Plus section on our website http://mcr.umh.edu.
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APPENDIX
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ICD-9-CM Codes Case Finding List
ICD-9-CM Codes
Diagnosis (New codes are in Bold)
140.0 – 199.1
199.2
200.0 – 202.98
203.0 – 208.92
209.0 – 209.30
209.31 – 209.36
209.40 – 209.69
209.7 – 209.79
225.0 – 225.9
227.3 – 227.4
228.02
228.1
Malignant neoplasms – “solid tumors”
Malignant neoplasm associated with transplanted organ
Malignant neoplasms of lymphoid and histiocytic tissue
Multiple myeloma, immunoproliferative neoplasms, and leukemias
Malignant neuroendocrine neoplasms
Merkel cell carcinoma of skin and other specified sites
*Benign carcinoid tumor of specified sites, other and unknown sites
Secondary neuroendocrine tumors; secondary carcinoid tumors
Benign neoplasm of brain and other parts of the CNS
Benign neoplasm of pituitary, craniopharyngeal duct, pineal gland
Hemangioma of intracranial structures
Lymphangioma, any site (screen for reportable brain, CNS and endocrine)
229.9
230.0 – 234.9
Benign neoplasm of unspecified site (screen for potential 225-227 miscodes)
Carcinoma in situ Exceptions; 233.4 prostatic intraepithelial neoplasia)
Note: 233.1 includes CIN (non-reportable) and adenocarcinoma in situ of
Cervix (REPORTABLE)
Endometrial stromal neoplasia, low grade (8931/1)
Stromal endometriosis (8931/3 per ICD-O-3)
Stromal myosis (endolymphatic) (8931/3 per ICD-O-3)
Stromatosis, endometrial (8931/3 per ICD-O-3)
Neoplasm of uncertain behavior of pituitary gland, craniopharyngeal duct, pineal gland
236.0
237.0 – 237.1
237.5 – 237.7
237.79
238.4
238.6
238.71
238.72
238.73
238.74
238.75
238.76
238.77
238.79
Neoplasm of uncertain behavior of brain, spinal cord, meninges (NOS, cerebral, spinal), cranial
nerve, other CNS site, acoustic neuroma, neurofibromatosis type 2
Polycythemia vera (9950/3)
Solitary plasmacytoma (9731/3)
Extramedullary plasmacytoma (9734/3)
Essential Thrombocythemia (9962/3)
Essential hemorrhagic thrombocythemia
Essential thrombocytosis
Idiopathic (hemorrhagic) thrombocythemia
Primary thrombocytosis
Refractory anemia (RA) (9980/3)
Refractory anemia with ringed sideroblasts (RARS) (9982/3)
Refractory cytopenia with multilineage dysplasia (RCMD) (9985/3)
Refractory cytopenia with multilineage dysplasia and ringed sideroblasts (RCMD-RS)
Refractory anemia with excess blasts-1 (RAEB-1) (9983/3)
Refractory anemia with excess blasts-2 (RAEB-2) (9983/3)
Myelodysplastic syndrome with 51 deletion (9986/3) - 51 minus syndrome NOS
Chronic myeloproliferative disease (9960/3)
Myelosclerosis with myeloid metaplasia (9961/3)
Refractory cytopenia with multilineage dysplasia (9985/3)
Therapy-related myelodysplastic syndrome (9987/3)
Myelodysplastic syndrome, unspecified (9989/3)
Myelofibrosis with myeloid metaplasia (9961/3)
Agnogenic myeloid metaplasia
Idiopathic myelofibrosis (chronic)
Myelosclerosis with myeloid metaplasia
Primary myelofibrosis
Post-transplant lymphoproliferative disorder (9987/3)
Lymphoproliferative disease (chronic)NOS (9970/1)
Megakaryocytic myelosclerosis (9961/3)
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ICD-9-CM Codes
239.6 – 239.7
259.2
273.2
273.3
273.9
277.88
288.3
288.4
289.6
289.83
511.81
789.51
999.81
V07.3
V12.41
62.3 – 62.42
92.20 – 92.29
92.30 – 92.39
Diagnosis (New codes are in Bold)
Myloproliferative disease (chronic) J5511 NOS (9906/3)
Panmyelosis (acute) (9931/3)
Neoplasm of unspecified nature of brain, meninges, cranial nerves
Carcinoid syndrome; hormone secretion by carcinoid tumors
Gamma heavy chain disease; Franklin disease (9762/3)
Waldenstrom macroglobulinemia (9761/3)
Unspecified disorder of plasma protein metabolism (screen for potential 273.3 miscodes)
Tumor lysis syndrome – spontaneous; following antineoplastic drug therapy
Hypereosinophilic Syndrome (9964/3)
Hemophagocytic syndrome (9751/3, 9754/3) Reportable inclusion terms: Histiocytic
syndromes
Familial Polycythemia (synonym for polycythemia vera)
Acute myelofibrosis (9931/3)
Malignant pleural effusion
Malignant ascites
Extravasation of vesicant chemotherapy
Other prophylactic chemotherapy (screen carefully for miscoded malignancies)
Personal history of benign neoplasm of the brain
Orchiectomies (Treatment for prostate malignancies)
Therapeutic radioisotope administration
Stereotactic radiosurgery, NOS
*Carcinoid tumor, NOS (8240/3) is reportable for all sites except appendix. Records coded as benign
carcinoid tumors should be reviewed to verify that the tumors are actually benign.
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Documents to Photocopy
Face Sheet
History and Physical Summaries
Progress Notes
Physician’s Orders
Initial Nursing Assessment
Imaging Reports
Consultations
Endoscopy reports
Lab/Marker Study
Operative Reports
Pathology Reports
Cytology Reports
Treatment Summaries
Autopsy Report
Death Certificate
Documents to Photocopy
All demographical information including Social
Security Number and Race
Only ones pertaining to patient’s diagnosis, workup, staging, treatment, etc.
Only include orders with any indication of cancer
diagnosis or treatment
X-rays, CT scans, MRI, bone scans, mammograms,
US, BE, etc, that pertain to the diagnosis of the
primary malignancy or workup to determine
regional extension or metastatic disease. These
documents are very important and useful to MCR
abstractors in determining the appropriate stage.
Cancer-related only
As they apply to this diagnosis: colonoscopy, EGD,
bronchoscopy, thoracoscopy, etc.
Very few other lab tests are diagnostic of cancer.
Petrinent tests (PSA, CEA, AFP, etc.) are often
noted in orders or progress notes.
This includes incisional/excisional biopsies, surgical
resection, bone marrow biopsies etc.
This includes fine needle aspirations (FNA),
thoracentesis, paracentesis, washings, etc
Chemotherapy, radiation therapy, hormonal, etc.
If available
If available
Do Not Photocopy
Complete nurses’ notes
Physical or rehabilitation therapy assessments and
notes
Patient’s rights
Conditions of admission
Living Wills
EKG Series
Non-cancer related imaging reports
Those necessary for co-morbid conditions, such as
cardiac
Daily lab work
Most pertinent lab will be documented in the
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physician’s orders and progress notes
Low Volume Facility Reporting Schedule
Reporting Period
Quarterly
Low Volume Facility Reporting Schedule
Cases Diagnosed
Due Date
Jan/Feb/Mar 2010
October 15, 2010
Apr/May/June 2010
January 15, 2011
Jul/Aug/Sept 2010
April 15, 2011
Oct/Nov/Dec 2010
July 15, 2011
Jan/Feb/Mar 2011
October 15, 2011
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