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A: The Ferrans & Powers Quality of Life Index (QLI ) is a measure of health-related
quality of life and in the context of the AACVPR Registry would not be used for a
patients psychosocial score. In the context of CMS, however, the Ferrans & Powers
Quality of Life Index-Pulmonary version may be an appropriate instrument for
assessing health-related quality of life in PR patients.
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Q2: We are currently collecting data with the PSET (pulmonary selfefficacy tool), which has been part of WisPro (Wisconsins PR outcomes
collection) for years. It is not currently one the AACVPR Pulmonary Rehab
Registry data collection tools. Do you think it might be added in the
future?
A1 & 2: A limited number of additional tools and measures could be added to the
registry based on the level of validation, reliability, and use in PR programs and
research. Please forward any related comments and supporting documentation to
registry@aacvpr.org.
Q: On the outcome / diagnosis page can an other category be added?
There are some esoteric diagnoses that are not listed.
A: Thank you for your feedback; we will be adding this option to the PR Registry.
Q: Where would one gain access to some of these outcome measuring
tools, as our program doesn't currently use some of them?
A: A great reference for measuring outcomes is the AACVPR Pulmonary
Rehabilitation Outcomes Toolkit, available online to registry subscribers and AACVPR
members. The toolkit includes the following sections:
Functional Status/Exercise Capacity
Dyspnea Measurement
Quality of Life
Psychosocial
Chronic Lung Disease Assessment Tools and Resources (including COPD
Assessment Test, METs, FEV1, BODE Index, and 6MWT)
References
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A: The registrys Data Extraction utility provides data in Microsoft Excel format.
Please note that your program can only extract data that your program has entered.
You will not be able to extract data from other programs.
Q: Will the registry data be available for research and statistical
purposes?
A: There will be a procedure for accessing and using data for research; this process
is separate from registry subscription and data entry by a program.
Registry Subscription
Q: Is the AACVPR Pulmonary Rehab Registry included in AACVPR
membership?
A: No, the registry requires a program subscription, independent of AACVPR
membership.
Q: How much does it cost to subscribe to the registry?
A: Participation in the registry is based on an annual program subscription. The fee
is dependent on program size, based on the number of new Phase 2 patients who
enroll in your program annually. The current fee structure is as follows:
With payment received April 1 December 31, 12-month subscription fee valid
through June 30 of following year:
Annual enrollment of more than 75 patients: $150/year
Annual enrollment of 25-75 patients: $125/year
Annual enrollment of fewer than 25 patients: $100/year
With payment received January 1 March 31, 18-month subscription fee valid
through June 30 of following year (after which renewal will based on 12-month
subscription above):
Annual enrollment of more than 75 patients: $225/year
Annual enrollment of 25-75 patients: $187.50/year
Annual enrollment of fewer than 25 patients: $150/year
Q: Can the same Participation Agreement be used for cardiac and
pulmonary programs at same facility?
A: No. Each program must have its own Participation Agreement in place with
AACVPR for participation in the registry. In addition, if a program is participating in
both the AACPVR Cardiac and Pulmonary Rehabilitation Registries, the program
must have a separate Participation Agreement in place for each registry.
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populate the Certification application with outcomes from the registry is currently
being addressed and will be available in the future. (Additional data may still need
to be obtained from other sources and entered manually.) For now, the process for
Program Certification remains the same. Please visit the AACVPR Web site to learn
more about Program Certification.
Programs do not need to be certified to use the registry, nor is registry participation
a requirement for Program Certification.
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