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Pre-implementation notice: Data collection changes for lung and heart-lung candidates coming

Nov 14, 2023 | Heart/lung, News, Policy changes, Transplant hospital

Pre-implementation notice: Data collection changes for lung and heart-lung candidates coming

Audience:

  • Lung and heart-lung transplant programs
  • OPTN lung transplantation committee

At-a-glance

Several data collection changes for lung and heart-lung candidates will be implemented in two phases, the first of which impact WaitlistSM and will take effect Dec. 13, 2023. An overview of the phase one changes is available below.

Waitlist changes

  • Removed data collection not used to calculate the allocation score
  • Revised data collection to improve data quality
    • Transition to serial data collection so programs can add values for multiple dates, including six months prior to listing
  • Added data collection on clinical criteria known to impact mortality
  • Assigned values for candidates on ECMO or high flow nasal cannula to be used in calculating score

Please see the Waitlist section below for a complete list of the data collection changes in Waitlist associated with this release.

What you need to do

Starting Dec. 13, lung/ heart-lung transplant programs are advised to:

  • Change diagnosis code for any candidates who should be listed under “Combined Pulmonary Fibrosis and Emphysema” (new code)
  • Review assisted ventilation and supplemental oxygen fields and update as needed
  • For candidates on “intermittent mechanical” – indicate if hospitalized or not
  • For candidates on ECMO – indicate if on VA or VV ECMO and if mechanically ventilated
  • For supplemental oxygen – provide device type and oxygen needs at rest, with sleep, and with exercise
  • Fill out new data fields as candidates come in for evaluations

Additional details

These data collection changes are expected to inform future updates to the mortality models used for calculating the lung CAS. These data collection updates will not change the variables, coefficients, rating scales, or weights used to calculate the lung composite allocation score (CAS), but values will be assigned for parts of the score for candidates on extracorporeal membrane oxygenation (ECMO) or high flow nasal cannula.

  • Values greater than 26.33 L/min may be entered for supplemental oxygen though for the purposes of calculating the CAS, the maximum value of 26.33 L/min will be used
  • Candidates on ECMO will receive maximum value for supplemental oxygen in the CAS as long as assisted ventilation & supplemental oxygen fields are up to date; this allows transplant programs to report supplemental oxygen needs in more detail for candidates on ECMO
  • For candidates on high flow nasal cannula, supplemental oxygen is entered in L/min and % and the value that provides the higher CAS will be used in calculating the score

Phase two data collection changes will impact the TCR and TRR in TIEDI® and will be implemented in 2024. More details will be sent to members at a later date. For a complete list of changes coming, see the policy notice.

Education and resources

Online help documentation and the OPTN Lung CAS calculator will be updated along with this release. A list of data definition updates is also available on UNOS.org.

The following educational offerings will be coming to UNOS Connect this week.

  • UNetSM for Lung Continuous Distribution (includes data collection changes)
  • Lung Community Update (Nov. 15 webinar recording)
    • Addresses these data collection changes
    • Highlights from the six-month ling CD monitoring report
    • Development of Lung Offer Filters
  • NEW: Lung Mortality Model Data Collection podcast episode
    • Join UNOS Policy Analyst Kaitlin Swanner and Dr. Erika D. Lease as they talk about data collected by the OPTN that will be used to inform future lung allocation policy development. Throughout the podcast-style episode, they discuss the background and importance of the mortality models project and highlight key elements

Policy documents

Questions

WaitlistSM changes

 

Waitlist data removals
Clinical criteriaChange
Percent Predicted FVC Value:

  • Calculated %
Remove
Post Bronchodilator Actual FEV1 Value:

  • Actual %
Remove
Pre Bronchodilator Percent Predicted FEV1 Value:

  • Calculated %
Remove
Post Bronchodilator Percent Predicted FEV1 Value:

  • Actual %
Remove
Requires Supplemental O2: How was the value obtained Value:

  • Calculated from formula
  • Read from oxygen delivery device
Remove
Waitlist data revisions
Clinical criteriaChange
Lung Diagnosis Code Value: Combined Pulmonary Fibrosis and Emphysema (CPFE)Add this diagnosis code to options under existing data collection for “Lung Diagnosis Code”Diagnosis code will be assigned the coefficient for diagnosis group D for the purposes of calculating the lung CAS.
Diabetes Current selection options:

  • Dependency unknown
  • Insulin dependent
  • Not diabetic
  • Not insulin dependent
Revise selection options to:

  • Treated with insulin
  • Not treated with insulin
  • Not diabetic
Assisted Ventilation Current selection options:

  • BiPAP
  • CPAP
  • Continuous mechanical – hospitalized
  • Continuous mechanical – not hospitalized
  • ECMO
  • Intermittent mechanical

No assisted ventilation needed

Revise selection options to:

  • BiPAP
  • CPAP
  • Continuous mechanical – hospitalized
  • Continuous mechanical – not hospitalized
  • ECMO
    • VA – mechanically ventilated
    • VA – not mechanically ventilated
    • VV – mechanically ventilated
    • W – not mechanically ventilated
  • Intermittent mechanical – hospitalized
  • Intermittent mechanical – not hospitalized
  • No assisted ventilation needed
Requires Supplemental O2 Current selection options with the ability to enter one with one evaluation date:

  • At rest
  • At night
  • With exercise only

Current units:

  • Max of 26.33 L/min
Revise selection options to allow for multiple entries and add evaluation dates for all three:

  • At rest
  • With exercise
  • With sleep

Proposed units:

  • Max of 100 L/min

Add device selection options:

  • High flow nasal cannula (L/min and %)
  • Nasal cannula (L/min only)
  • Reservoir cannula (L/min only)
  • Trach collar (% only)
  • Face mask (% only)
  • BiPAP (Either L/min or %)
  • CPAP (Either L/min or %)
  • Continuous mechanical – hospitalized (% only)
  • Continuous mechanical – not hospitalized (% only)
  • Intermittent mechanical – hospitalized (% only)
  • Intermittent mechanical – not hospitalized (% only)
Six Minute Walk Distance Value:

  • Integer value (no change)
Moved field to be below Requires Supplemental O2 for better flow of data entry
Waitlist additions
Clinical criteriaChange
NYHA Functional Classification (PH Diagnosis Only)Values:

  • Class I
  • Class II
  • Class III
  • Class IV
Add to Waitlist
Choose one:

  • BNP
  • NT-proBNP
  • (PH Diagnosis Only)

Values:

  • pg/mL OR
  • ng/L
Add to Waitlist
Pericardial effusion (PH Diagnosis Only) Values:

  • Yes
  • No
Add to Waitlist
Massive hemoptysis, number of times in the last yearValue:

  • Free text integer number
Add to Waitlist
Exacerbations, number of times in the last year Values:

  • Free text integer number
  • Check box to indicate if candidate has been on continuous intravenous antibiotics for longer than 60 days in the last year
Add to Waitlist
Microbiology Selection options:

  • None
  • Burkholderia cenocepacia (genomovar III) ≤
  • 1 year
  • Burkholderia cenocepacia (genomovar III) >
  • 1 year ago
  • Burkholderia gladioli ≤ 1 year
  • Burkholderia gladioli > 1 year ago
  • MDR or Pan-R gram negative bacteria ≤ 1
  • year
  • MDR or Pan-R gram negative bacteria > 1
  • year ago
  • Mycobacterium abscessus ≤ 1 year
  • Mycobacterium abscessus > 1 year ago
  • Scedosporium/Pseudallescheria species
  • Complex/Lomentospora ≤ 1 year
  • Scedosporium/Pseudallescheria species
  • Complex/Lomentospora > 1 year ago
Add to Waitlist with option to select more than one
Diffusing Capacity of the Lungs for Carbon Monoxide (DLCO) Values:

  • mL/min/mmHg
  • Too sick to perform DLCO test Yes/No
Add to Waitlist as part of the pulmonary function test data section
Right Atrial Pressure (RAP) Value:

  • mmHg
Add to Waitlist as part of the most recent heart catheterization data section
Pulmonary Vascular Resistance (PVR) Values:

  • dynes/sec/cm5 OR
  • Wood units (mmHg/L/min)
Add to Waitlist as part of the most recent heart catheterization data section
Waitlist serial data collection changes
Clinical criteria Six month prior to listing dataChange
Actual Forced Vital Capacity (FVC) Value:

  • Liters (L)
This data is currently collected in Waitlist. The Committee proposes expanding this data collection to allow programs to enter values for multiple dates, including six months prior to listing.
Pre Bronchodilator Actual FEV1 Value:

  • Liters (L)
This data is currently collected in Waitlist. The Committee proposes expanding this data collection to allow programs to enter values for multiple dates, including six months prior to listing.
Diffusing Capacity of the Lungs for Carbon Monoxide (DLCO) Values:

  • mL/min/mmHg
  • Too sick to perform DLCO test? Yes/No
This data is not currently collected in Waitlist, so the Committee proposes adding this data collection and allowing programs to enter values for multiple dates, including six months prior to listing.
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