What methodology is used for the Center-Specific Survival Analysis?
One of CIBMTR's goals for the Center-Specific Survival Analysis is to calculate a fair and accurate predicted survival rate given a center's recipient case mix to compare with the actual survival at the center. To do this, a fixed-effects censored data logistic regression model is used. Details of the Center-Specific Survival Report, variables included, and modeling methodology can be found on CIBMTR's website.
Why is 90% follow-up at one year used as the threshold to include a center?
It is expected that whenever possible, all US hematopoietic cell transplantation (HCT) centers performing allogeneic HCT will be included in the Center-Specific Survival Report. However, completeness of reporting and follow-up is critical to appropriate survival analysis. Biased reporting would substantially affect centers' reported performance.
There was strong consensus at the 2010 Center Outcomes Forum that follow-up expectations for centers should be to reach at least 90% of expected follow-up for inclusion in the analysis, with further consideration given to a final expectation of 95% completeness of follow-up. Since the outcome being measured is one-year survival, follow-up should exceed one year (365 days) to be considered complete for this purpose. Although the expectation for inclusion is currently greater than 90% completeness of follow-up at one year, most US centers have completeness exceeding 95%.
How are one-year survival and reporting completeness measured?
A patient's vital status is considered as of their last reported follow-up/contact date. For a patient to be counted as achieving one-year survival, their most recent contact date must be more than 365 days after the transplant and their status reported as alive. A patient whose death and death date have been reported is also considered to have complete follow-up.
There is a 30-day grace period for completeness of follow-up for the one-year form. If the form is completed up to 30 days before one-year post-transplant, the form will count toward meeting 90% completeness, but the patient will not count as reaching one-year survival. To meet inclusion criteria, 90% of patients must have follow-up beyond one year.
What are the criteria for inclusion in the Center-Specific Survival Analysis?
All US transplant centers that performed at least one allogeneic (unrelated or related) HCT in a rolling three-year window are considered for inclusion in the report, provided they have sufficient follow-up available. Baseline and follow-up data are provided to CIBMTR by transplant centers at the time of transplant (baseline) and at 100 days, six months, and annually post-transplant, using standardized forms. Every effort is made to update follow-up information on each recipient. Some recipients are lost to follow-up, and final survival status at one year is unknown. If a recipient is known to be alive, centers can use the survival tool to report the one-year contact date instead of making the form lost to follow-up. To address the problem of recipients lost to follow-up, the analysis only includes centers that demonstrated 90% completeness of follow-up, meaning that the one-year status was known for at least 90% of their transplanted recipients. Procedures are in place to accommodate small numbers of patients who are alive with less than one year of follow-up.
Centers may be excluded for quality problems involving data fields that affect survival modeling identified through data quality audits, if CIBMTR cannot be confident the data quality is adequate to determine whether they are performing as expected. Centers must complete all the requirements in their Corrective Action Plan (CAP) and pass a subsequent audit before they can be included again. Individual patients may be excluded for data collection form errors or having no follow-up data.
How do I make corrections to my center's data?
CIBMTR produces the Center-Specific Survival Report annually for all US centers performing allogeneic HCT. As the dataset is prepared, centers receive raw data files from CIBMTR which should be reviewed in their entirety. CIBMTR clinical data analysts will also place queries on their forms in FormsNet; these queries will be listed in the center's weekly query report. Centers should review and correct their data directly in FormsNet. If a center is unable to submit data revisions by the stated deadlines, CIBMTR will use the data available as of the deadline in the final multivariate risk adjustment models. Centers may also make corrections to data provided to CIBMTR throughout the year. Data revisions submitted after the deadline will be reflected in the following year's report.
When will CIBMTR rerun the Center-Specific Survival Analysis to include corrected data?
CIBMTR produces the Center-Specific Survival Report annually for all US centers performing allogeneic HCT. As the dataset is prepared, centers receive data queries from CIBMTR clinical data analysts and should review and correct their data. If a center is unable to submit data revisions by the stated deadlines, CIBMTR will use the data available as of the deadline in the final multivariate risk adjustment models. Data revisions submitted after the deadline will be reflected in the following year's report.
Can the risk adjustment model account for a skewed distribution fo significant variables?
Yes. Because the risk adjustment model adjusts for individual patient risk factors, and because of the large number of patients included in the model, the Center-Specific Survival Analysis risk adjustment model will properly handle skewed distributions at an individual center.
Will my center receive a lower performance status due to transplanting high-risk patients?
The purpose of risk-adjustment in the Center-Specific Survival Analysis is to accommodate variability in the patient-, disease- and certain transplant characteristics between centers, including patients at high risk of unfavorable outcomes. CIBMTR makes every effort to collect the data essential for this purpose while carefully weighing the effort necessary for centers to provide the data. CIBMTR works closely with physicians and other experts in the HCT community to maintain up-to-date data collection forms to facilitate risk adjustment - which also supports CIBMTR's research portfolio.
Centers have expressed hesitancy to undertake HCT in certain patients they believe represent high-risk of poor outcomes. The Foundation for the Accreditation of Cellular Therapy (FACT) does not recommend this approach, and there is no clear objective evidence that centers are routinely making selections in this way. CIBMTR and the American Society for Transplantation and Cellular Therapy (ASTCT) spend considerable time educating payers and others regarding the analysis and potential consequences.
Why doesn't CIBMTR just publish raw survival?
One of the CIBMTR's goals for the transplant Center-Specific Survival Analysis is to calculate a fair and accurate predicted survival rate given a center's recipient case mix. Publishing unadjusted survival estimates would not allow for adjustment based on patient- and disease- characteristics that may differ between transplant centers.
To do this, a fixed-effects censored data logistic regression model is used. The fixed-effects logistic regression model provides information about how the recipients treated in a particular center would have fared had they been transplanted at a "generic" transplant center within the Program. This model assumes no center effect. In other words, it assumes that recipients are dying at the same uniform rate across all Program transplant centers, after adjusting for covariates. This model also adequately accounts for recipients with incomplete follow-up at one year.
Why can't centers generate the same analyses from DBtC?
There is no risk adjustment in the DBtC application, located on the CIBMTR Portal. DBtC provides users with self-service access to a subset of their center's most commonly used TED and comprehensive report (CRF) form data from 2008 to present and includes functionality to view descriptive statistics and outcomes, as well as filter and analyze data subsets of interest. Robust visualization features provide options for viewing data in a chart or table and export options permit download of these data in Excel file formats. Centers may also download their own center's data used for the Center-Specific Survival Analysis using the Center Performance Analytics tools found within the CIBMTR Portal.
How can I obtain my center's data?
The Center Performance Analytics (CPA) tool, available on the CIBMTR Portal, is designed to support HCT center performance and quality initiatives using the dataset from the Transplant Center-Specific Survival Analysis. Users authorized by their center can visualize and filter their center's own one-year survival rate, based on the rolling three-year period of data included in the Transplant Center-Specific Survival Analysis dataset. Users can create and implement customized, ad hoc queries and export a download of the source dataset for their center, which they may share at their discretion. CPA is refreshed annually following release of the Transplant Center-Specific Survival Report.
Copies of prior Center-Specific Survival Reports and center univariate reports can be downloaded from the DataOps dashboard found on the CIBMTR Portal.
How do I access the CIBMTR Portal?
The DBtC and CPA applications are accessible through the CIBMTR Portal.
To access the CIBMTR Portal and its applications, you must have an NMDP OKTA user account. The primary data manager or medical director at your site is able to create an account for you in the Network Partner Portal. The access granted is based on the role you are given in the system. If you have trouble accessing the system after an account is created, please put in a support ticket via CIBMTR Center Support.
Once you have access: Go to the CIBMTR Portal landing page; click on "Sign in with Okta"; enter your FormsNet3 username and password; click on "Send Push" and approve the push notification on your mobile device.
How can I compare my center's characteristics with others?
The Center Performance Analytics (CPA) tool, available on the CIBMTR Portal, is designed to support center performance and quality initiatives using the dataset from the Transplant Center-Specific Survival Analysis. Users authorized by their center can compare their center's data relative to aggregated data from other centers using predefined filters that include geographic region, historical performance, volume of HCTs, and patient population served. CPA is refreshed annually following release of the Transplant Center-Specific Survival Report.
Why can't the survival calculator generate expected survival on more than one patient at a time?
The intent of the online survival calculator located on the CIBMTR Portal is to provide centers with a tool to predict one-year survival for individual allogeneic HCT recipients. The CIBMTR Center-Specific Survival Report data is used to calculate the "expected" probability of one-year survival for individual recipients of first allogeneic HCT in the United States. Patient, disease, and limited transplant characteristics of allogeneic HCT recipients at US HCT centers for the three-year period covered by the report are used to generate these estimates. The methods used to generate the Center-Specific Survival Report can be found on the CIBMTR website. [Direct link to Methodology PDF] The calculator is updated annually to reflect new information contained in the Center-Specific Survival Report.
How can I publicize my center's results?
We understand some centers may use the results found in the Center-Specific Survival Report for marketing purposes. The PDF report sent to transplant center medical directors is written for a professional audience and not posted publicly. To avoid misinterpretation, we created the Transplant Center Directory website with patient-friendly language and explanations, and we suggest centers cite this website in any marketing materials. Similarly, the observed survival point estimates found in the report are not adjusted for differences in case mix and, therefore, are not meant for comparison between centers. Statistically significant results, when reported, only apply to an individual center's comparison of actual and predicted survival. If centers wish to use this information for marketing purposes, we recommend only using the performance rating (as expected, below expected, or above expected). Additional guidance can be found in Guidelines for News Releases.
What are Center Outcomes Forums?
To increase transparency and understanding of center outcomes reporting in hematopoietic cell transplantation (HCT), CIBMTR began in 2008 to hold biannual Center Outcomes Forums. CIBMTR invites representatives of the HCT community, including transplant physicians and center directors, the ASTCT, governmental funding agencies, patients, private payers, and statisticians; the solid organ transplant community; and experts in hospital and quality outcomes reporting. The purpose is to review the current approach to center-specific outcomes reporting and to provide meaningful recommendations for future reports. A summary of previous Forums and recommendations can be found on CIBMTR's website.