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User Guide. CHI St. Luke's Health Baylor College of Medicine Medical Center Center Code: TXHI

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User Guide This report contains a wide range of useful information about the lung transplant program at CHI St. Luke's Health Baylor College of Medicine Medical Center (TXHI). The report has three main
User Guide This report contains a wide range of useful information about the lung transplant program at CHI St. Luke's Health Baylor College of Medicine Medical Center (TXHI). The report has three main sections: A. Program Summary B. Waiting List Information C. Transplant Information The Program Summary is a one-page summary highlighting characteristics of the program, including the number of candidates on the waiting list, the number of transplants performed at the program, the number of patients being cared for by the program, and patient outcomes, including outcomes while on the waiting list (the transplant rate and the death rate while on the waiting list) and outcomes after transplant (patient and graft survival probabilities). If the program performed transplants in both adults and children, survival probabilities for adults and children (pediatrics) are provided separately. For each of the outcomes measures presented, a comparison is provided showing what would be expected at this program if it were performing as similar programs around the country perform when treating similar patients. As part of this comparison, we provide a measure of how certain we are that this program is performing as expected or significantly better or worse than expected. These statements of certainty are provided as footnotes to the figures, so please interpret the numbers in the figures carefully after considering the information in the footnotes. More details regarding these outcome measures are provided in Sections B and C of the report. The Waiting List Information section contains more detailed information on how many candidates are on the waiting list at the program, the types of candidates on the waiting list, how long candidates typically have to wait for a transplant at this program, how frequently candidates successfully receive a transplant, and how often candidates on the waiting list die before receiving a transplant. Table B1 shows the activity on this program's waiting list during two recent 1-year periods and provides comparisons to all programs within this program's OPTN region (see for information on OPTN regions) and the nation as a whole. Tables B2 and B3 describe the candidates on the waiting list at this program, with comparisons to candidates waiting in the same donor service area (OPO/DSA) the OPTN region, and the nation as a whole. Table B4 shows how many candidates were removed from the waiting list because they received a transplant. The program's transplant rate is calculated as the number of candidates who received a transplant divided by the person-years observed at the program (person-years is a combination of how many candidates were on the waiting list along with how long each candidate was followed since some candidates are not on the waiting list for the entire year). The transplant rate and comparisons to what would be expected at this program are presented in Figures B1 and B2. Figure B1 shows the transplant rate compared to what was expected at this program. The expected transplant rate is an estimate of what we would expect at this program if it were performing transplants at rates similar to other programs in the US with similar candidates on their waiting lists. The expected rate is only an estimate, and is made with a certain level of uncertainty. This uncertainty is shown in Figure B2. Figure B2 displays the ratio of the observed to the expected transplant rate. A ratio of 1 indicates that the observed transplant rate was equal to the expected transplant rate, while a ratio less than 1 indicates the observed rate was lower than expected rate and a ratio greater than 1 indicates the observed rate under contract with the Health Resources and Services Administration (HRSA). Page: i User Guide was higher than the expected rate. However, the level of uncertainty must be considered when interpreting these numbers. The 95% confidence interval is also shown on Figure B2. This confidence interval provides a range within which the true ratio of observed to expected transplant rates is likely to be. If this confidence interval includes (crosses), then we cannot sy that this program's observed transplant rate is different from what would be expected. The observed deceased donor transplant rate at this program was per 100 person-years, and this was not significantly different from what would be expected with a 95% confidence interval of [0.53, 1.10] for the ratio of observed to expected transplant rates. Transplant rates are also provided for adult and pediatric patients separately along with comparisons to adult and pediatric rates in the DSA, the OPTN region, and the nation. Please refer to the PSR Technical Methods documentation available at for more detail regarding how expected rates are calculated. The death rate (also known as the mortality rate) for candidates on the waiting list is presented in Table B5 and Figures B4-B6. These data are presented in the same way as the transplant rate data in the previous section. The intent of these tables and figures is to describe risk of death once candidates are listed rather than while they are listed. Therefore, time at risk and deaths after removal from the waiting list for reasons other than transplant, transfer to another transplant program, or recovery (no longer needing a transplant), and before any subsequent transplant, are included. As with transplant rates, mortality rates should be interpreted carefully taking into consideration the confidence interval displayed in Figure B5. For a complete description of how observed and expected mortality rates are calculated, please refer to the technical documentation available at. Table B6 presents information on what happens to candidates on the waiting list by three different time points after listing: 6 months, 12 months, and 18 months. The table displays percentages of candidates who have died, been removed from the waiting list, been transplanted, or been transferred or lost-to-follow-up. Tables B7 and B8 provide more detail regarding how many candidates have received a deceased donor transplant by certain time points during the first 3 years after being put on the transplant waiting list. Each row of Tables B7 and B8 presents the percent of candidates who received a deceased donor transplant by each time point. Table B9 presents data on the time it took for different percentages of patients to be transplanted for candidates added to the list between 01/01/2011 and 06/30/2016. The time it took for 5% (the 5th percentile) of patients to receive a transplant at this program was 0.3 months. If Not Observed is displayed in the table, then too few candidates received transplants before 12/31/2016 to calculate a particular percentile of transplant times. The Transplant Information section begins with descriptions of transplant recipients in Tables C1 and C2. Data on recipients of deceased donor transplants are presented (Tables C1D and C2D); if applicable, data on recipients of living donor transplants are presented separately (Tables C1L and C2L). Comparisons to the region and the nation as a whole are provided. A description of the deceased donors used at this program is provided in Table C3D, along with characteristics of living donors in Table C3L, if applicable. Finally, information on the transplant procedure for deceased and living donor transplants is presented in Tables C4D and C4L, respectively. Starting with Table C5, transplant outcomes are presented along with comparisons to what would be expected at this program and what happened in the nation as a whole. Tables C5-C10 present information on graft survival (survival of the transplanted organ), with data presented separately for adult and pediatric recipients. Patients are followed from the time of transplant until either failure of the under contract with the Health Resources and Services Administration (HRSA). Page: ii User Guide transplanted organ or death, whichever comes first. Please refer to the technical methods for more information on these calculations (). While Tables C5-C10 present data on graft survival, Tables C11-C16 present information on patient survival. For these tables, patients are followed from the time of transplant until death, regardless of whether the transplant is functioning or the patient required another transplant to survive. Tables C17 and C18 summarize the multiorgan transplant outcomes at this program. The summary statistics in these tables are descriptive and are not risk-adjusted for different donor and candidate characteristics. Additional information regarding the technical methods and the risk adjustment models used to estimate expected event rates is available on the SRTR website at. We welcome and encourage feedback on these reports. Please feel free to share feedback with the SRTR at the following under contract with the Health Resources and Services Administration (HRSA). Page: iii Table of Contents Section Page User Guide i A. Program Summary Program Summary 1 B. Waiting List Information Waiting list activity 2 Demographic characteristics of waiting list candidates 3 Medical characteristics of waiting list candidates 4 Deceased donor transplant rates 5 Waiting list mortality rates 6 Waiting list candidate status after listing 7 Percent of candidates with deceased donor transplants: demographic characteristics 8 Percent of candidates with deceased donor transplants: medical characteristics 9 Time to transplant for waiting list candidates 10 C. Transplant Information Deceased donor transplant recipient demographic characteristics 11 Deceased donor transplant recipient medical characteristics 12 Deceased donor characteristics 13 Deceased donor transplant characteristics 14 Deceased donor graft survival 15 Deceased donor patient survival 21 Multi-organ transplant graft survival 27 Multi-organ transplant patient survival 27 under contract with the Health Resources and Services Administration (HRSA). Page: iv A. Program Summary Figure A1. Waiting list and transplant activity Total on waiting list* Active on waiting list* New additions to the waiting list Total transplants Table A1. Census of transplant recipients Recipients 01/01/ /01/ /31/ /31/2016 Transplanted at this center Followed by this center* transplanted at this program transplanted elsewhere * Recipients followed are transplant recipients for whom the center has submitted a post-transplant follow-up form for a transplant that took place before the 12-month interval for each column. * At the end of the 12-month period 01/01/ /31/ /01/ /31/2016 Figure A2. Transplant rates 01/01/ /31/2016 Figure A3. Waiting list mortality rates 01/01/ /31/2016 Rate per 100 Person Years Observed Deceased donor transplant rate (1) (1) Not significantly different (p=0.167) Expected Rate per 100 Person Years Observed Waiting list mortality rate (1) (1) Not significantly different (p=0.967) Expected Figure A4. First-year adult graft and patient survival: 01/01/ /30/2016 Figure A5. First-year pediatric graft and patient survival: 01/01/ /30/2016 Observed Expected this figure during 01/01/ /30/ Graft Failures (58 transplants) 5.26 Patient Deaths (58 transplants) under contract with the Health Resources and Services Administration (HRSA). Page: 1 B. Waiting List Information Table B1. Waiting list activity summary: 01/01/ /31/2016 Activity for 01/01/2016 to 12/31/2016 Counts for as percent of registrants on waiting list this center on 01/01/2016 Waiting List Registrations 01/01/ /01/2016- This Center OPTN Region U.S. 12/31/ /31/2016 (%) (%) (%) On waiting list at start Additions New listings at this center Removals Transferred to another center Received living donor transplant* Received deceased donor transplant* Died Transplanted at another center Deteriorated Recovered Other reasons On waiting list at end of period * These patients were removed from waiting list with removal code indicating transplant; this may not equal the number of transplants performed at this center during the specified period. under contract with the Health Resources and Services Administration (HRSA). Page: 2 B. Waiting List Information Table B2. Demographic characteristics of waiting list candidates Candidates registered on the waiting list between 01/01/2016 and 12/31/2016 Demographic Characteristic New Waiting List Registrations All Waiting List Registrations 01/01/2016 to 12/31/2016 (%) on 12/31/2016 (%) This Center OPTN Region U.S. This Center OPTN Region U.S. (N=43) (N=341) (N=2,789) (N=23) (N=151) (N=1,424) All (%) Ethnicity/Race (%)* White African-American Hispanic/Latino Asian Other Unknown Age (%) 2 years years years years years years years Other (includes prenatal) Gender (%) Male Female * Race and ethnicity are reported together as a single data element, reflecting their data collection (either race or ethnicity is required, but not both). Patients formerly coded as white and Hispanic are coded as Hispanic. Race and ethnicity sum to 100%. under contract with the Health Resources and Services Administration (HRSA). Page: 3 B. Waiting List Information Table B3. Medical characteristics of waiting list candidates Candidates registered on the waiting list between 01/01/2016 and 12/31/2016 Medical Characteristic New Waiting List Registrations All Waiting List Registrations 01/01/2016 to 12/31/2016 (%) on 12/31/2016 (%) This Center OPTN Region U.S. This Center OPTN Region U.S. (N=43) (N=341) (N=2,789) (N=23) (N=151) (N=1,424) All (%) Blood Type (%) O A B AB Unknown Previous Transplant (%) Yes No Unknown Primary Disease (%) Idiopathic Pulmonary Arterial Hypertension Cystic Fibrosis Idiopathic Pulmonary Fibrosis Emphysema/COPD Other Missing under contract with the Health Resources and Services Administration (HRSA). Page: 4 B. Waiting List Information Table B4D. Deceased donor transplant rates: 01/01/ /31/2016 Waiting List Registrations This Center OPO/DSA Region U.S. All Candidates Count on waiting list at start* ,548 Person Years** ,455.8 Removals for Transplant ,327 Adult (18+) Candidates Count on waiting list at start* ,513 Person Years** ,420.5 Removals for transpant ,288 Pediatric ( 18) Candidates Count on waiting list at start* Person Years** Removals for transplant * Counts in this table may be lower than similar counts in other waiting list tables, such as Table B1. A small percentage (~1%) of patients are found to have died or been transplanted before being removed from the waiting list, so these patients are excluded if the event occurs prior to the start of the study period. Inactive time on the waiting list is included in the calculations for this table. ** Person years are calculated as days (converted to fractional years). The number of days from January 1 or from the date of first wait listing until death, transplant, removal from the waiting list or December 31. Figure B1D. Observed and expected deceased donor transplant rates: 01/01/ /31/2016 Rate per 100 Person Years This Center OPO/DSA Region U.S Observed Expected Figure B3D. Observed adult (18+) and pediatric ( 18) deceased donor transplant rates: 01/01/ /31/2016 Rate per 100 Person Years Adult (18+) NA NA NA NA Pediatric ( 18) This Center OPO/DSA Region U.S Figure B2D. Ratio of observed to expected deceased donor transplant rates This Center 01/01/ /31/2016 (1) (1) Not significantly different (p=0.167, 95% CI=[0.53, 1.10]) 95% CI Upper Limit O/E Ratio 95% CI Lower Limit under contract with the Health Resources and Services Administration (HRSA). Page: 5 B. Waiting List Information Table B5. Waiting list mortality rates: 01/01/ /31/2016 Waiting List Registrations This Center OPO/DSA Region U.S. All Candidates Count on waiting list at start* ,548 Person Years** ,550.9 Number of deaths Adult (18+) Candidates Count on waiting list at start* ,513 Person Years** ,513.1 Number of deaths Pediatric ( 18) Candidates Count on waiting list at start* Person Years** Number of deaths * Counts in this table may be lower than similar counts in other waiting list tables, such as Table B1. A small percentage (~1%) of patients are found to have died or been transplanted before being removed from the waiting list, so these patients are excluded if the event occurs prior to the start of the study period. Inactive time on the waiting list is included in the calculations for this table. ** Person years are calculated as days (converted to fractional years). The number of days from January 1 or from the date of first wait listing until death, transplant, 60 days after recovery, transfer or December 31. Figure B4. Observed and expected waiting list mortality rates: 01/01/ /31/2016 Figure B5. Ratio of observed to expected waiting list mortality rates Rate per 100 Person Years This Center OPO/DSA Region U.S Observed Expected Figure B6. Observed adult (18+) and pediatric ( 18) waiting list mortality rates: 01/01/ /31/2016 Rate per 100 Person Years Adult (18+) 19.4 NA NA NA NA Pediatric ( 18) This Center OPO/DSA Region U.S This Center 01/01/ /31/2016 (1) (1) Not significantly different (p=0.967, 95% CI=[0.28, 2.02]) 95% CI Upper Limit O/E Ratio 95% CI Lower Limit under contract with the Health Resources and Services Administration (HRSA). Page: 6 B. Waiting List Information Table B6. Waiting list candidate status after listing Candidates registered on waiting list between 07/01/2014 and 06/30/2015 This Center (N=32) U.S. (N=2,555) Waiting list status (survival status) Months Since Listing Months Since Listing Alive on waiting list (%) Died on the waiting list without transplant (%) Removed without transplant (%): Condition worsened (status unknown) Condition improved (status unknown) Refused transplant (status unknown) Other Transplant (living or deceased donor) (%): Functioning (alive) Failed-Retransplanted (alive) Failed-alive not retransplanted Died Status Yet Unknown* Lost or Transferred (status unknown) (%) TOTAL (%) Total % known died on waiting list or after transplant Total % known died or removed as unstable Total % removed for transplant Total % with known functioning transplant (alive) * Follow-up form covering specified time period not yet completed, and possibly has not become due. under contract with the Health Resources and Services Administration (HRSA). Page: 7 B. Waiting List Information Table B7. Percent of candidates with deceased donor transplants: demographic characteristics Candidates registered on the waiting list between 01/01/2011 and 12/31/2013 Percent transplanted at time periods since listing Characteristic This Center United States N 30 day 1 year 2 years 3 years N 30 day 1 year 2 years 3 years All , Ethnicity/Race* White , African-American Hispanic/Latino Asian Other Unknown Age 2 years years years years years years , years , Other (includes prenatal) Gender Male , Female , * Race and ethnicity are reported together as a single data element, reflecting their data collection (either race or ethnicity is required, but not both). Patients formerly coded as white and Hispanic are coded as Hispanic. Race and ethnicity sum to 100%. under contract with the Health Resources and Services Administration (HRSA). Page: 8 B. Waiting List Information Table B8. Percent of candidates with deceased donor transplants: medical characteristics Candidates registered on the waiting list between 01/01/2011 and 12/31/2013 Percent transplanted at time periods since listing Characteristic This Center United States N 30 day 1 year 2 years 3 years N 30 day 1 year 2 years 3 years All , Blood Type O , A , B AB Previous Transplant Yes No , Primary Disease Congenital Disease Retransplant/Graft Failure Idiopathic Pulmonary Arterial Hypertension Cystic Fibrosis Idiopathic Pulmonary Fibrosis , Alpha-1-Antitrypsin Deficiency Emphysema/COPD , Other Missing under contract with the Health Resources and Services Administration (HRSA). Page: 9 B. Waiting List Information Table B9. Time to transplant for waiting list candidates* Candidates registered on
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