Update on Continuous Distribution of Hearts
At a glance
In December 2018, the OPTN Board of Directors approved the continuous distribution framework for allocation of all organs. Continuous distribution will rank waiting list candidates based on points for various factors, such as medical urgency, candidate biology, patient access, and placement efficiency. Continuous distribution will remove the hard boundaries built into the current framework to increase equity for patients and transparency in the system.
This request for feedback builds upon the 2023 concept paper, provides an overview of the project’s development process and progress, and offers next steps for continuous distribution of hearts. The paper also requests community feedback that will assist the Heart Transplantation Committee’s work.
Requested feedback - Heart values prioritization exercise
The community is asked to participate in a heart values prioritization exercise. The exercise, which uses an Analytical Hierarchy Process (AHP) methodology, will help the committee determine how to weight the various attributes used to develop a composite allocation score.
- The committee is seeking feedback about
- The proposed list of attributes and rating scales to be included in the first version of continuous distribution
- Values-based decision-making for weighing attributes against each other
- Progress to date and the plan for moving the project forward
Participate in the exercise
- What it's expected to do
- Provide a more equitable approach to matching candidates and donors
- Remove hard boundaries that prevent candidates from being prioritized higher on the match run
- Establish a system that is flexible enough to work for each organ type
- What it won't do
- This request for feedback is not a proposed policy change, but will help the Heart Transplantation Committees develop a future policy proposal
Terms to know
- Attribute: Criteria used to classify then sort and prioritize candidates. For example, in heart allocation, suggested criteria include medical urgency, candidate biology, patient access, and placement efficiency.
- Values Prioritization Exercise (VPE): An exercise that asks participants to rate the importance of an attribute when it is compared to another attribute.
- Composite Allocation Score: Combines points from multiple attributes together. This request for feedback proposes the use of composite allocation scores in a points-based framework.
- Rating Scale: Describes how much preference is given to candidates within each attribute.
- Weights: Reflect the relative importance or priority of each attribute toward the overall goal of organ allocation. Combined with the ratings scale and each candidate’s information, this results in an overall composite score for prioritizing candidates.
Read the full proposal (PDF)Provide feedback
Anonymous | 02/22/2024
I agree that VAD wait time should be factored into CAS. I also agree that sensitization should be included.
Anonymous | 02/21/2024
I think this policy benefits the progress of heart transplants, though, I feel that more additional policies can be accomplished. There are a lot of difficult factors and boundaries facing heart transplants, but I think the project is flowing in a more reasonable direction. I also like how the policy has the donations and transplant buildings closer in proximity, as it reduces longer waits and other problems that may occur.
Juan Vilaro | 02/20/2024
First of all, I applaud the committee for their tremendous work in structuring this new system for heart allocation. A few comments from my end:
1. I DO agree that points for time on LVAD support should be weighed into the scoring system. In our current system, my impression is that length of temporary mechanical support is extended sometimes to the detriment of the patient because the decision to transition the patient to a durable LVAD implies extending the waitlist time considerably due to the transition to the lower status once they are no longer on t-MCS. Including this as part of the scoring system would incentivize transplant teams to transition patients to durable LVADs sooner, which is already known to be a more stable platform for these patients with better survival, but it is underutilized due to the desire to get people straight to transplant sooner
2. Need to make sure that complex congenital heart disease is given thoughtful consideration and appropriate points within this scoring system. Our current allocation system does not factor in the reduced donor pool these patients have because of sensitization, and requires cumbersome exemptions and in-hospital stays in order to reflect the urgency for transplant that many of them already have even if they are not in the hospital
3. I like the additional points for age under 18, but I also think that certain age ranges above 18 should be considered for additional points within the system (i.e. 18-40 with dilated or genetic cardiomyopathies in the absence of other comorbid conditions) I understand part of this may already be captured in the factor that aims to estimate survival with and without transplant for these recipients, as I would think this patient population has a high survival rate given younger age and lack of comorbidities.
Ewa Sztandera | 02/14/2024
I would like to comment on patients with a permanent LVAD and their listing status. Permanent LVAD patients are treated as if they are "less ill" than patients who have temporary VADs placed, even though the indication for both is heart failure. Durable LVAD patients are more stable and likely more optimized prior to surgery than those with a temporary VAD who are acutely ill. Durable VAD patients would likely have better outcomes after transplantation given that they are medically optimized prior to surgery. More so, the risk of currently having a permanent LVAD, and the prior high risk endured during placement of it, is not currently accurately represented. I would largely advocate for the review and amendment of listing for those with permanent VADs.
Andrew Kao | 02/13/2024
Thank you for your hard work on this very difficult proposal. I would like to answer the questions you posed and add a comment or two:
1. I think it is reasonable to given some prioritization to time on LVAD but not so much that programs would place LVAD to gain time - then we would be back to the same problem before the current 6-tier listing system - is 5% per year fair and they would potentially get up to 50% priority points? I don't know but the top priority should not be higher than that for the really medically urgent (i.e. ECMO)
2. I think the attributes chosen for the first iteration of the policy seems reasonable EXCEPT for the post transplant survival - I could not tell if this was in the VPE to gather information or because it will be included (some parts of the proposal stated it wouldn't be). I agree wholeheartedly we should gather information on post transplant survival but we have zero data to base any decisions on so please don't include this.
3. I don't think other attributes need to be included in this first draft
4. I think the committee is doing its best to determine weight given to each attribute - I would say that if we determine prior living donor and pediatric candidates should have priority, we would need to follow wait times for these candidates pre and post policy change to see if the intended effect is achieved (same with the high cPRA group, blood type O group). My concern is that the lung policy led to unintended decrease in blood group O transplants - how are we going to safeguard against that or other unforeseen consequences?
5. I already mentioned that post transplant survival should not be included but I don't think it is?
Finally, I would like to emphasize the importance of proximity - I am quite concerned that the lung policy led to a 160 nautical mile increase in median donor hospital distance - the October 18, 2018 allocation change already significantly increased all program's procurement distance - I am worried about staff and surgeon safety as we fly farther and farther (not to mention cost) - there has to be priority given to a donor heart in close proximity to the recipient (like < 250 nm) vs one that is very far away - not sure the current proposal of having the same priority for up to 500 nm and then linear decrease to 0 at 1500 nm makes sense - in reality, very few programs would ever go out to 1500 nm - maybe 800-900 nm but we have to worry about post transplant survival as well and early postoperative complications. In addition, for coastal programs or border states, much of their circle will be in another country or in the ocean. I would suggest making the scale of 0-250 nm getting 100% and then a linear decrease from 250 to 1000 nm. Thank you for your consideration and thank you for your hard work and dedication to this important project.
Anonymous | 02/11/2024
Anonymous | 02/08/2024
I applaud the work to date of the heart committee but would advocate for more.
1. There are inequities within statuses (especially status 2) and thus these should be teased out and spread across the CD risk - VT/VF patients are far more likely to die than patient on an IABP for example
2. We know that disease markers of hypoperfusion and end organ failure (Cr, Lactate, LFTs) are very powerful. We have five years of data gathered that we could analyze and, with appropriate data analytics resources, add to the medical urgency risk score
3. We are supportive of time on VAD concept
4. While supportive of getting post tx survival as a metric, our current data shows that the very patients we are trying to give priority to (Sensitized patients, VAD patients, congenital patients) are the poorest post tx outcomes. THe goal is by getting them organs sooner, the post transplant outcomes will be improved. If we also punish them for poorer post tx outcomes, we will simply erase the points they got for disdavantaged and place them back in the limbo status they often suffer from.
Déboralis Ramos | 01/31/2024
Anonymous | 01/24/2024
Continuous distribution burdens the screening staff. Suggest allocating brain dead organs different than dcd. Unet does not let you screen out different ages/distances or Neuro status so when there is a high Las too many offers come in to handle that would otherwise be screened out. Also go back to offering to three centers at a time. It’s too busy to be entering prov yes for pt with 100 people in front of them. Blind prov yes being entered as a result.