Predictive Models for advanced Heart Failure
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Sarah:
I agree that this type of study is necessary.
The University of Colorado has an active HF service. I’m certainly interested in facilitating/collaborating on such a study. Jean Kutner.
Sarah,
Are you thinking initially of a registry? From the registry we could determine the data points necessary to develop a model to be studied. I think a model to prognosticate HF outcomes is the necessary first step in PCHF research. I think it will be interesting to determine critical data points based on literature and anecdotal input, from clinicians across the country. The Texas Heart Institute @ St. Lukes Episcopal Hospital/ Houston Texas would be interested in participating in this type of study.
It was nice to meet you @ HFSA—I’m looking forward to collaboration in this and Hospice and HF palliative care—bridging the gap
Erin Donaho, RN
We are looking for funding to support such a registry. Funding will be needed for web-site data management and for individual centers that collect and enter data— likely the cost is $200,000-300,000 because of the demands of infrastructure & website costs and cost to support data collection (estimated at $200-300 per patient).
Hi: I am one of the geriatric reseacher and hospice medical director at Brigham and Women’s Hospital in Boston. Was there is follow up to above comments? If not is there still interest in pursuing this further?
A model to prognosticate outcomes for patients
with advanced HF is needed to help guide clinical
decisions for the majority of patients. A study to
develop such a model would need to collect a set
of data for a large number of patients (perhaps
2-3000 persons), and would need to
include items recognized to be important in
prognosis for HF as well as items that correlate
with frailty in general. Prospective study would
need to identify patients who are truly at phase 3
- 5 in our diagram; patients would need to be
receiving or be intolerant to optimal medical
management for their HF. No single center cares
for this number of individuals with advanced HF,
therefore a large, multicenter study is required
to understand clinical outcomes and develop better
prognostic models or guidelines.
This is just the kind of study we’re planning to
pursue within the PC-HEART collaborative. Please
post any thoughts you have about how we might
proceed. Are you interested in participating in
such a study within your organization? Are you
interested in funding such a study? Please contact
me if so!