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National Cancer Data Base - Data Dictionary PUF 2015

Summary of 2012 PUF User File Changes as of 12/1/2014

The following changes have been made for the 2012 PUF:


Reference to change in PUF file content due to active CoC Accreditation status

 If you have had a previous PUF file for the same site as your new file, you may note that the number of cases in the new file has decreased, especially for older diagnoses.  The data you received this year are limited to cases reported by currently-accredited CoC hospitals.  Cases reported by hospitals that are no longer accredited are excluded.  Case reports for hospitals that are not currently accredited are not updated in the NCDB data, and their quality cannot be assured.  The principal effect will be on cases more than 5-10 years old.


New variables added

Reference Date Flag

Every facility has a reference date, from which they are accountable for the completeness of the data for cases diagnosed in that year through the present. Since a facility may request to move their reference date forward, there are some instances where a case’s diagnosis year falls before the facility’s reference date. This item, REFERENCE_DATE_FLAG, is coded 0 in cases where this occurs. A 1 signifies cases where the diagnosis year is on or after the reference date year.  Reports for cases whose diagnosis date is prior to the reference date cannot be changed or updated by the facility.  For this reason, PUF researchers may choose to omit cases where the diagnosis date precedes the reference date, depending on the nature of the study. Note that, depending on diagnosis year and cancer site, excluding cases with diagnosis year preceding the reference year may omit greater than 40% of cases.  

 

PUF Multiple Source Item 

All CoC accredited programs that initially diagnose a patient or that provide all or part of first course treatment report the case to the NCDB.  If more than one facility submitted a report, the “best” is provided in the PUF file (PUF_MULT_SOURCE variable, coded 1), based on the most recent patient contact with the program, completeness of coded detail and/or edit quality, where differences exist. The record used in the case of ties is arbitrary.  If this item is coded 0, only one facility provided a report for this cancer.  This item should be used for hospital level comparisons using surgical volume, treatment, distance, or other hospital level computations in order to take into account cases treated at more than one hospital.  Researchers can choose to limit hospital level analyses to only cases that received treatment at one CoC facility, or may choose to only include variables that indicate treatment was received at the facility included in the PUF.  Researchers are encouraged to consult with NCDB staff to further clarify any questions regarding duplicate records and treatment in more than one facility.

 

Treatment variables which indicate whether treatment was received at the reporting facility 

Prior versions of the PUF only included summary treatment variables, which indicated whether treatment was received at any CoC accredited facility, including facilities not included in the PUF data (see PUF Multiple Source Explanation above). The new treatment variables include “Surgery at this Facility”, “Chemotherapy at this Facility”, and “Other Treatment at this Facility”.  The variable “Location of Radiation Therapy” was included in prior PUF releases, but was only required to be reported starting in diagnosis years 2003 and later.  Prior to 2003, reporting of this variable was voluntary. 

 

2012 Census and 2013 Urban/Rural Data

Area-based or environmental measures of patient income and education are provided in the PUF. These measures are derived by linking the reported ZIP code of the patient's residence at the time of diagnosis to year 2000 Census data. The data describing median household income and level of educational attainment represent the ZIP code of patient residence, not that of individual patients. Since the Census only uses the short form as of 2010, the majority of the information normally collected by the decennial census is now collected in the American Community Survey (ACS). The PUF will include the most recent ACS data released as of April 2014, which consists of survey years 2008-2012. The 5-year datasets are not just an average of each year in the period; the final estimate uses several weighting methods, among other adjustments. Items added are 2008-2012 median household income quartiles (MED_INC_QUAR_12) and 2008-2012 percent without high school degree quartiles (NO_HSD_QUAR_12.) The descriptions in the respective entries in the PUF data dictionary for each data item briefly describe the cautions of comparing with Census 2000, and more information can be found at: https://www.census.gov/acs/www/guidance_for_data_users/comparing_2012/. The data are extracted from the American Fact Finder website: http://factfinder2.census.gov/.

The 2013 Rural-Urban Continuum data have also been added to the PUF. The 2003 Rural-Urban data are still included in the PUF, and the labels for the classification codes are the same in the 2003 and 2013 data, so a direct comparison may be made. More information can be found on the United States Department of Agriculture (USDA) website: http://www.ers.usda.gov/data-products/rural-urban-continuum-codes.

 

Ninety Day Mortality

In addition to Thirty Day Mortality, the 2012 PUF data now includes 90 day mortality vital status for patients who underwent surgical procedures.  The PUF data do not include Thirty and Ninety Day Mortality for patients diagnosed in 2012 due to incomplete follow up for these patients.

 

 

Changes to existing variables

PUF Vital Status

This item is now available for cases diagnosed in years 1998 to 2011.

 

Last Contact or Death, Months from Dx

This item is now available for cases diagnosed in years 1998 to 2011.

 

Radiation Ended, Days from Start of Radiation

The data dictionary entry for Radiation Ended, Days from Start of Radiation (RAD_ELAPSED_RX_DAYS) has been updated to correctly label the elements in the item and give more detail as well. The original definition incorrectly defined 8888 as Not Applicable and 9999 as Unknown, and did not specify that days elapsed ranged from 1 to 998 days.

New definition

Code 

Definition

000

No radiation administered

001 - 998

Number of elapsed days

999

Missing or incomplete dates for radiation start and end, days elapsed missing, or unknown if had radiation

For diagnosis years prior to 2003, this item uses a single ROADS item containing the number of elapsed days between the start and end of radiation. For diagnosis years 2003 and later, this item is calculated as the number of days between the date radiation started (NAACCR Item #1210) and the date on which radiation therapy ended (NAACCR Item #3220). 1 is added to the number of days elapsed. This means that if radiation starts and ends on the same date, then 1 day has elapsed, if radiation ends the day after it is started, then 2 days have elapsed, and so on.