Question 640: Was the intent to complete HCT procedure (conditioning, infusion, and period of recovery from neutropenia) as an outpatient?

Report “yes” if the plan was to complete all conditioning, infusions, and recovery in the outpatient setting. If the plan was to admit the patient for any part of the transplant, report “no” and continue with question 642.

Report “yes” even if the recipient required an unplanned admission. This admission will be captured in question 641.

Question 641: Did the recipient require an unplanned admission?

Report whether the recipient required an unplanned admission during the reporting period. This includes unplanned admissions for the purpose of completing an HCT as well as admissions to address any post-HCT complications. If an unplanned admission was required, report “yes” and continue with question 642. If the recipient did not require and unplanned admission, report “no” and continue with question 644.

Question 642-643: Was the recipient discharged prior to the date of contact?

If the recipient was discharged from the hospital during the reporting period, report “yes” for question 642 and report the discharge date in question 643. If the recipient was admitted to the hospital multiple times during the reporting period, report first discharge date. If the recipient was not discharged from the hospital during the reporting period, report “no.”

If the recipient died without ever being discharged from the hospital, report “no.”

For more information regarding reporting partial or unknown dates, see General Instructions, General Guidelines for Completing Forms.

Question 644: Total number of inpatient days (day 0 to day 100) in first 100 days post-HST

Enter the total number of inpatient days (including day 0). If the recipient was discharged and readmitted during the first 100 days, the total should include days hospitalized after being readmitted. When counting the total number of inpatient days, count either the day of admission or the day of discharge; do not count both.

If the recipient receives a subsequent HCT prior to day 100, do not include the start date of the preparative regimen for the subsequent HCT (or the date of the subsequent infusion if no preparative regimen was given).

Question 645-647: Recipient height: (most recent)

Questions 645-647 will only be enabled / answered for pediatric patients (≤ 16 years old) when the form visit ID is 6 months or greater. These questions will be disabled / not answered for all recipients on the day 100 follow-up form.

Indicate whether the recipient’s height is known. If “known,” report the recipient’s most recent height and specify the units in question 646. Also, report the date the recipient’s height was last measured in question 647. If the recipient’s height was not measured during the reporting period, report “unknown” and continue with question 648.

For more information regarding reporting partial or unknown dates, see General Instructions, General Guidelines for Completing Forms.

Question 648-650: Recipient weight: (most recent)

Indicate whether the recipient’s weight is known. If “known,” report the recipient’s most recent weight and specify the units in question 649. Also, report the date the recipient’s weight was last measured in question 650. If the recipient’s weight was not measured during the reporting period, report “unknown” and continue with question 651.

For more information regarding reporting partial or unknown dates, see General Instructions, General Guidelines for Completing Forms.

Question 651-653: Functional status

The CIBMTR uses the Karnofsky / Lansky scale to determine the functional status of the recipient on the date of contact. The Karnofsky Scale is designed for recipients aged 16 years and older and is not appropriate for children under the age of 16. The Lansky Scale is designed for recipients one year old to less than 16 years old. If the recipient is less than one year old, leave questions 651-653 blank.

Select the appropriate performance scale, Karnofsky or Lansky, based on the recipient’s age. Using this scale, select the score (10-100) that best represents the recipient’s activity status immediately prior to the date of last actual contact. Acceptable performance scores include those recorded within 14 days prior to 100 Day and Six-Month contact dates. For the annual reporting periods, performance scores may be reported if dictated within one month of the contact date. The only valid scores are 10-100; zero is not a valid response for this scale, nor are values not ending in zero, such as “85.” The Karnofsky / Lansky scale can be found in Appendix L.

Recipient performance status is a critical data field that has been determined to be essential for all outcome-based studies. Determination of performance status is ideally performed by a healthcare provider. Centers are encouraged to put tools in place to facilitate this collection. If a Karnofsky / Lansky score is not documented in the source documentation (e.g., inpatient progress note, physician’s clinic note), data professionals are encouraged to discuss a determination with the physician or mid-level health care provider (NPs and PAs) rather than make an assignment themselves, based on inadequate information. Documentation from an RN who has been trained and authorized to determine performance scores may also be used.

The CIBMTR recognizes that some transplant centers prefer to assign and use the ECOG performance score as opposed to the Karnofsky / Lansky score. Although the ECOG and Karnofsky / Lansky performance score systems are based on similar principles, the scales are not the same. For example, the Karnofsky / Lansky scale is described in 10 categories, whereas the ECOG performance status is reported in six categories. Due to the overlap between the two systems, an ECOG score of “one” can represent either “80” or “90” on the Karnofsky / Lansky scale; whereas, a Karnofsky / Lansky score of “80” or “90” is converted directly to an ECOG score of “one.” Therefore, the Karnofsky / Lansky scale can be more accurately converted into ECOG.

However, for centers that collect only an ECOG performance score, CIBMTR will make the following accommodations when auditing the source data:

  • Centers assigning ECOG scores should do so using standard practices to ensure accuracy.
  • For the purposes of CIBMTR reporting, conversion of ECOG to Karnofsky / Lansky should follow a standard and consistent practice to account for the lack of direct mapping. This practice should be clear and reproducible.

Question 654: Was the recipient pregnant at any time in this reporting period? (Female only)

Indicate whether the recipient was pregnant at any time during the reporting period. Skip this question for male recipients. If “yes,” complete questions 656-657. If “no,” continue with question 658.

Question 655: Was the recipient’s female partner pregnant at any time in this reporting period (Male only)

Indicate whether the recipient’s female partner was pregnant at any time during the reporting period. Skip this question for female recipients. If “yes,” complete questions 656-657. If “no,” continue with question 658.

Question 656: Was the recipient or recipient’s partner still pregnant at the date of last contact?

Indicate whether the recipient or recipient’s partner was still pregnant on the date of last contact? If the recipient or recipient’s partner was still pregnant on the date of last contact, report “yes” and continue with question 658. If the recipient or recipient’s partner was not pregnant at the date of last contact, report “no” and indicate the outcome in question 657.

Question 657: Specify the outcome of pregnancy:

Specify the outcome of the pregnancy using the options provided on the form.

Question 658-660: Has the recipient smoked tobacco cigarettes since the date of last report?

The intent of this question is to determine the recipient’s history of smoking cigarettes only. Do not report the use of cigars, pipe tobacco, chewing tobacco, or other drugs. Indicate whether the recipient has smoked tobacco cigarettes since the date of the last report. If “yes,” complete questions 659-660. If the recipient has not smoked tobacco cigarettes since the date of the last report, or their smoking history is not known, report “no” or “unknown” respectively and continue with question 661.

Question 661: Specify the category which best describes the recipient’s current occupation.

Select the category that best describes the recipient’s current occupation. If the recipient is a student, check “student.” If the recipient is younger than school-aged, check “under school age” and continue with question 665. If “other” is selected, report the recipient’s occupation in question 662.

Only one work status may be reported. If a recipient has multiple possible occupations during the current reporting period, report the highest level of work being performed. For example, full time work would be reported over part time work and part time work would be reported over being a student.

If the recipient is not currently employed as of the date of last contact, check the box that best describes his / her last job in the current reporting period.
If the recipient was not employed at any time during the current reporting period, select “Not employed during this reporting period” and continue with question 665.

Questions 663-664: What is the recipient’s current or most recent work status during this reporting period?

Select the work status that best describes the recipient’s current or most recent employment during this reporting period. If the recipient is retired, specify their retirement status in question 664.

Last modified: Apr 07, 2020

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