Outpatient Cardiac Rehabilitation Registry Frequently Asked Questions

FAQs:

General FAQs about the Registry: What, Why, Who
FAQs About Subscription Process
FAQs About Field, Definitions, and Data Entry
FAQs About Assessment Tools
FAQs About Processes of Record Creation, Completion, Deletion
FAQs About Data Extraction Utilities
Sponsors & Development

General FAQs
Q: Why should our program participate in the registry?
A: Through the AACVPR Outpatient Cardiac Rehabilitation Registry, cardiac rehabilitation programs will be able to:

  • Create and manage patient profiles
  • Enter and view outcomes data on enrolled patients in real time
  • Track and quantify progress of the cardiac rehabilitation program in meeting performance goals
  • Produce individual and grouped outcomes reports

By assisting in the collection, management, and interpretation of outcomes data, the registry will help cardiac rehabilitation programs:

  • Compare outcomes and processes to evidence-based goals and national benchmarks
  • Implement quality improvement projects based on real data
  • Enhance documentation and communication with the program’s key audiences, such as hospital administrators and referring physicians
  • Promote the role of cardiac rehabilitation in the management of chronic heart and vascular disease
  • Increase support from physicians
  • Improve 3rd-party payer coverage and reimbursement rates

Q: Can small cardiac rehabilitation programs benefit and make a difference?
A: Every program’s data is valuable and makes a difference. Approximately two-thirds of programs in the Registry identify themselves as "small" or "medium" sized programs.  We can learn much about the outcomes and processes of these programs through their participation.

For benchmarking, the registry offers reports that show how your patient outcomes compare not only to general averages across the country but also to programs in your state and to similar-size programs. The information you get from the registry will help you manage your patients’ outcomes data and build a better program.

In fact, small programs may have the most to gain. You get an easy-to-use tool to:

  • Organize the collection, analysis, and reporting of outcomes
  • Demonstrate program performance to your administrators, physicians, and medical director

Plus, you’ll get the support of AACVPR and experts working on the registry – all for a very fair price.

Q: What is the expected amount of time required to participate in the registry?
A: The time requirements for entering patient data will vary depending on your familiarity with the interface, your access to the data that you are entering, and the amount of data you enter. Once you are familiar with navigating the interface, and understand the field definitions, we estimate it should take approximately 5-10 minutes to enter a complete patient record.

Q: I am a small department with limited staff. What amount of man hours will it take to be part of the registry – to be able to register and continue in this program?
A: The time for the application process will depend on several factors within your institution that cannot be estimated. You will need to pay your subscription, have the Participation Agreement signed and returned, view the training Webcast, and complete the mandatory online training exercise (entering training data) before you can start entering patient data. The payment and Participation Agreement process will vary between institutions. The Webcast is approximately one hour, and the online training exercise will take about 15 to 20 minutes to complete.
Once you are using the registry, the time requirements for entering patient data will vary depending on your familiarity with the interface, your access to the data you are entering, and the amount of data you enter. We estimate that once you are familiar with navigating the interface and you understand the definitions for each field it should take approximately 5 to 10 minutes to enter a complete patient record.

Q: What reports will we be able to view?
A: Pre-configured reports will include:

  • Individual Patient Report showing the patient’s pre- and post-program values, percent change, and comparison to secondary prevention goals.
  • Grouped Outcomes (Program) Report showing aggregated pre- and post-outcomes and change in scores.
  • Program Comparison Report showing your program's aggregated outcomes at entry and discharge and how they compare to programs of your size, programs in your state, or the Registry as a whole.
  • Performance Measures Report, designed to assess the program’s success at getting its patients to national guideline goals in secondary prevention areas.

Reports will reflect user-specified time frames and may be sorted by diagnosis, age, sex, and/or clinical status. Reports can be pulled at any time, and programs can also create customized data queries. All reports can be downloaded in Excel format. In addition, internal reports will allow ongoing calculation of national benchmark data by AACVPR, while a special interface will allow aggregated data mining by approved outside agencies.

Please note: Until there is a critical amount of data in the registry, program-level reports and aggregated data may not be very meaningful. Comparative data may change significantly as more records are added.

Q: How will the registry ensure accuracy of data?
A: Each participating program must designate a principal user who is responsible for monitoring data integrity. Every registry user will be required to complete the registry training before gaining access, and must familiarize themselves with the data definitions established for the registry. In addition, the registry will apply rigorous data validation techniques during data entry within the online interface.  We also stipulate that any third-party applications that upload data to the Registry meet the same stringent criteria.

Q: Do patients need to provide consent to have their data included in the registry?
A: The purpose of the registry is to monitor patient outcomes and promote quality improvement efforts. HIPAA provides that, in this case, the program can disclose the patient’s PHI to the registry without the need for separate patient consent.

Q: Do I need to get Institutional Review Board (IRB) approval before using the registry?
A: The AACVPR Outpatient Cardiac Rehabilitation Registry is a quality assurance database and does not involve human subjects research as defined by the Office for Human Research Protections. As such, it has been determined that the registry does not require IRB oversight. Individual institutions, however, may require quality assurance activities to have IRB review. Programs should verify with their administration that participation in the registry complies with institutional requirements. In addition, a request to use data from the registry for a research project may require IRB review from the investigator’s own IRB. The registry protocol document is available for use as a starting point if needed; click here to download the protocol.

Q: Will we need to go through our legal department if we are to use patient names?
A: You should not need to pass this by your legal department, as it is included in the registry protocol. The protocol was reviewed by an independent Institutional Review Board (IRB), which determined that the registry does not require IRB oversight.

Q: Instead of the patient’s last name, can we use a unique number that we assign to the patient?
A: Entering the patient’s last name and medical record ID allows you to correctly identify a patient record. If you would prefer not to enter the patient’s last name, you can leave this field blank. However, a number, either the patient’s medical record ID or a unique number created by you, has to be entered into the “medical record ID” field in order to create a record. If you create a unique ID number, you will need to have procedures in place for matching these unique numbers with the patient.
These fields are used solely to allow you to correctly identify the patient’s record in the registry. These will not be used for anything else, and no one outside of your program or registry support services will have access to this information. Registry support services may need this information in order to assist programs with problems.


Subscription Process

Q: How do I subscribe to the registry?
A: To subscribe your program to the AACVPR Outpatient Cardiac Rehabilitation Registry and start entering data, you must:

  • Establish a principal user for the registry
  • Provide program information
  • Provide your program roster, including at least one secondary user
  • Submit a signed Participation Agreement
  • Submit the subscription payment
  • Complete the two-step training process

For detailed, step-by-step instructions – and to get started – please click here. You may start the subscription process at any time.

Q: What is the cost to participate in the registry?
A: Participation in the registry is based on an annual program subscription (valid July 1 through June 30). 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:

Payment Received between April 1 – December 31: 12-month subscription fee valid through June 30 of following year.

  • Annual enrollment of fewer than 100 patients - $175/year
  • Annual enrollment of 101-200 patients - $200/year
  • Annual enrollment of more than 200 patients - $225/year

Payment Received between January 1 – March 31: 18-months subscription fee valid through June 30 of following year.

  • Annual enrollment of fewer than 100 patients - $260/year
  • Annual enrollment of 101-200 patients - $300/year
  • Annual enrollment of more than 200 patients - $335/year

Q: When will our program be able to start using the registry?
A: Subscribing programs can enter patient data as soon as they have (a) established a principal user for the registry; (b) provided their program information; (c) provided their program roster, including at least one secondary user; (d) submitted a signed Participation Agreement; (e) submitted the subscription payment; (f) completed the two-step training process; and (g) updated program procedures as necessary to conform to the registry data definitions.

Each user must complete the mandatory training to obtain a login to the registry. Registry access is provided via individual, not program-wide, login.

Q: What does the mandatory training entail?
A: All registry users must complete a two-part training process – (1) view a one-hour training Webcast and (2) complete a 15- to 20-minute online training exercise – to gain access to the registry. The Webcast provides a tour of the registry platform and gives details about data entry and reports. The online training exercise helps familiarize users with the registry by guiding them through a sample patient record; during the training, users must enter sample data and successfully navigate through the registry interface. 

All registry users will also have access to a registry user’s guide, data definitions and comments, and other assessment tools and resources to facilitate the entry of consistent and accurate data from each program. The principal user is responsible for updating your program procedures so that the outcomes data you collect for the registry is accurate and compliant with registry definitions. This is to ensure that we have the highest quality data available for the registry. Once your program’s procedures are updated, you can start entering data into the registry. Exhibit A in the Participation Agreement provides a description of the role of the principal user.

Please note: Each program staff member who will be using the registry must complete both portions of the training – the Webcast and the online training exercise – and will receive his or her own link for the training exercise and for the live registry. Please do not share this link with your colleagues.

Q: What is the Participation Agreement?
A: Because of the inclusion of PHI, each participating program will need to have a signed Participation Agreement on file with AACVPR before it can enter or submit data to the registry. This agreement includes both a business associate agreement and a data use agreement. It is a standard legal document that identifies:

  • The parties that are sharing PHI – in this case, AACVPR and your program – and their responsibilities in maintaining the confidentiality and security of PHI
  • Who owns the data
  • What data each party can expect to get back
  • Who is liable if security is breached

Click here to download the AACVPR Registry Participation Agreement. Please present this document to your administrators, as it is very specific about how AACVPR can use data and closely follows basic HIPAA requirements.

In order to make the submission process as efficient as possible for you and for us, please do the following:

  • Insert the full and legal name of the entity that will be entering into the agreement on page 12 where indicated;
  • In section 9.12, add the address where you would like notices sent, including the name of the person to whom the notice should be addressed;
  • If you have any suggested revisions, please make those revisions directly on the document in a way that clearly shows the changes (e.g., “track” changes in the Word document); and
  • Please do not make revisions and send us a PDF document. We cannot accept PDFs. Please send back a Word document with your tracked changes. 

Signed participation agreements should be emailed to registry@aacvpr.org; or returned to AACVPR Headquarters, Attn: Registry, 330 N. Wabash Ave., Suite 2000, Chicago, IL 60611-4267; or faxed to 312/312-673-6924.

Q: Can we use our hospital’s business associate agreement instead?
A: The AACVPR Registry Participation Agreement includes a fully compliant HIPAA Business Associate Agreement (BAA).  AACVPR cannot agree to use any form other than the BAA that is included within the Registry Participation Agreement, as this BAA is specifically tailored to the Registry and specifies how AACVPR can and cannot use and disclose PHI related to this specific Registry. The Registry Participation Agreement also includes a HIPAA Data Use Agreement, which is required to participate in the Registry. The Registry Participation Agreement has other provisions related to the BAA and Data Use Agreement as well; therefore, the use of any other agreement would require further revisions.  For these reasons, AACVPR must insist on the BAA and Data Use Agreements that are included within the Registry Participation Agreement.  If you feel it is appropriate, you can make revisions to the BAA section of the Registry Participation Agreement and AACVPR legal counsel will review such revisions and decide whether to accept such revisions. If you would like to propose revisions, please send a Word document with your tracked changes to the Registry Participation Agreement to registry@aacvpr.org.

Q: Who is able to access our program’s data?
A: Registry subscribers have access only to their program’s patient information and to aggregated data from the registry as a whole. Subscribers are not able to access or view other programs’ data. AACVPR-approved nonsubscribers, such as researchers, have access only to aggregated and/or de-identified registry data. The data will be de-identified with respect to patient and program identifiers unless specifically permitted by the participating programs and required by the researcher. Hospital systems with multiple participating programs may request files of de-identified patient data from all programs within their system.

In addition, registry subscribers and AACVPR sign a Participation Agreement for limited data use giving AACVPR access to patient-specific information. AACVPR may use this information to provide reports of national outcomes and trends and to track morbidity and mortality rates. (Read more about the Participation Agreement.)

Q: Will we still be able to use our current patient management system?
A: AACVPR is working with its corporate partners—Life Systems International (LSI) Inc., Cardiac Science Corporation, and ScottCare Cardiovascular Solutions—to develop methods for transferring data from their applications to the registry. Your company’s technical support or sales representative should contact you regarding implementation.

If your program uses a paper-based patient management system, the registry provides an easy-to-use graphical user interface (GUI) that utilizes table-driven lookups and checkboxes to minimize typing and has multiple levels of validation to ensure data is entered correctly before it is submitted. You may decide to modify your current paper-based practices to complement the registry. 

For more information about the application programming interface (API) documentation or file uploads from existing data applications, contact AACVPR Headquarters at 312/321-5146, option 1.

Q: Will we need to change any of our program’s policies or procedures?
A: In order to standardize definitions so that all programs are measuring the same outcomes, you may have to modify your procedures so the data you collect conforms to the registry standards. Registry resources include a list of data definitions and comments, as well as references to various supported assessment tools and measurement protocols. If your program is using an assessment tool that is not supported by the registry, you may continue to use that tool; you simply won’t be able to enter the score/data into the registry. You will need to keep that data in a separate database or spreadsheet.

Q: What data is being collected in the registry?
A: The data set includes:

  • Patient demographics
  • Medical history, including:
    • Admitting diagnosis
    • Risk factors
    • Comorbid conditions
  • Referral and enrollment dates
  • Healthcare utilization, including adverse and unexpected events
  • Pre- and post-clinical data and assessment tools, including:
    • Lipids
    • Glucose
    • Blood pressure
    • Dietary outcomes
    • Medications
    • Tobacco use
    • Anthropometric data
    • Functional capacity and status
    • Psychosocial status

Not all of the data fields included in the registry are required fields; only a medical record ID and enrollment date need to be completed in order to save a record. Programs should collect and enter as much information as their resources allow, however. The more data entered, the better the feedback will be with respect to overall program performance.

Click here for a more detailed list of data elements in the registry.

Q: Do all fields in the Registry need to be entered? Which fields are required?
A: The only fields that need to be completed in order to save a record are the medical record ID and enrollment date. Programs should collect and enter as much information as their resources allow, however. The more data entered, the better the feedback will be with respect to overall program performance.
For a complete list of data elements, with indication of which fields are considered essential to the purposes of this registry, click here.

Q: Our program doesn’t use the same measurement tools and tests as the registry. Can we still participate?
A: Yes, you can. Many of the variables in the registry are not required; you don’t have to enter the data if you don’t have it or don’t use the tool. Also, it is okay to use tools that are not in the registry; you just won’t be able to enter the scores into the registry and will not be able to get feedback on your patients’ scores compared to other programs. What’s more important is that you are using validated tools and are using the scores to educate your patients and provide appropriate and individualized services based on the results. However, you may want to review some of the tools that are supported in the registry and see whether your current tools could be updated to these. Click here to see the data elements collected in the registry and the supported assessment tools.

Fields, Definitions, Data Entry

Q: I have to log back in every time after viewing a report in the registry. Why won't it stay logged in? What am I doing wrong?
Nothing. When this happens, it is usually because the security settings of your broswer are set to prevent a security breach when connected to the registry site.  You can fix this by making the registry URL a "trusted site".  You can read the Help Information in your broswer on how to add a website to your trusted sites list, do a web search on "how to add trusted sites to browser", or go to www.wikihow.com/Add-a-Website-to-Trusted-sites for instructions (for Internet Explorer only).  The cardiac registry URL is https://registry.aacvpr.org/

Q: Instead of the patient’s last name, can we use a unique number that we assign to the patient?
A: Entering the patient’s last name and medical record ID allows you to correctly identify a patient record. If you would prefer not to enter the patient’s last name, you can leave this field blank. However, a number, either the patient’s medical record ID or a unique number created by you, has to be entered into the “medical record ID” field in order to create a record. If you create a unique ID number, you will need to have procedures in place for matching these unique numbers with the patient.

Please note that the last name and medical record ID are used solely to allow you to correctly identify a patient’s record in the registry. They will not be used for anything else, and no one outside of your program or registry support services will have access to this information. Registry support services may need this information in order to assist programs with problems.

Q: Should we enter all comorbid conditions that a patient has ever had?  For example, if a patient had breast cancer several years ago, but has been treated and no longer has cancer, should this be entered as a comorbid condition?
A: Only enter comorbid conditions that the patient has at the time of program entry.  The Charlson Comorbidity Index was conceived as a way of identifying patients who were at risk for dying within a 30-day period of their hospitalization.  As a way of identifying CR patients who may be "high risk", we included the list of comorbid conditions used to calculate the Charlson Index.  Only include conditions that the patient is currently experiencing or are a chronic condition.  Any conditions that have been treated and no longer exist should not be included.

Q: Could some blank text fields be added to the registry so we could enter notes or custom tool scores?
A: It is not possible to have “blank” fields in the Registry as this might compromise our protected HIPAA status. For example, a program could mistakenly enter other protected health information or a patient identifier in the field and we would not know that. Also, free text fields cannot be aggregated or queried because there is no way our developer would know what kind of information is being entered.

Q: If a patient does not complete the CR program, do we have to enter their data into the registry? If so, how much of the data do we have to enter?
A: If a patient does not complete the CR program (defined as not receiving a final, formal discharge exercise assessment, review of secondary risk factors, and updated treatment plan), at a minimum you should enter as much demographic, medical history, program, and program admission data as possible. This information will be helpful in describing patients who drop out. Also be sure to enter the number of sessions the patient completed, the date of their last exercise session as the Discharge Date, and the reason for non-completion.

Q: When I enter a “0” (zero) for the Exercise Minutes per Day field, I get a yellow exclamation point saying the value is “outside of range”. What value should I enter if the patient did not exercise before coming to cardiac rehab? Should I leave it blank?
A: When you see a yellow exclamation point icon next to a field, it’s telling you that the value is outside an “expected” or “goal” range, depending on the field. However, the value will still be saved when you save the page. In the case of the exercise behavior fields, a 0 (zero) for exercise minutes or days can be entered, but the yellow icon lets you know that that isn’t an ideal value. If you see a red X icon and the field turns red, it means the value is outside of the outer boundaries for the field. You can’t save the page until you either delete the value or change it. You can view the boundaries or limits of the field by mousing over the field’s name.

Q: What should we do if a patient is referred to our program but doesn’t enroll and we don’t have a medical record number (MR#) assigned to them. The registry won’t let us enter a record without an MR#, and our hospital doesn’t assign an MR# to a patient until they are registered into our hospital system.
A: It is important to track the number of patients who are referred to your program but who don’t end up starting/enrolling. In cases where the patient does not have an MR#, you can create your own unique MR#. For example, you might use the patient’s last name initial and the date they were referred—“A06062014”. Or you could enter the area code of their home phone number and the date—“60806062014”. You can enter any letter and number combination you’d like as long as each patient has a unique value. DO NOT enter specific patient identifiers such as the patient’s Social Security Number, address, telephone number, etc.

Q: When should we follow-up on patients after they are discharged from cardiac rehabilitation?
A: AACVPR guidelines recommend performing some type of follow-up on patients after they have graduated from the immediate, outpatient phase of CR (Phase 2). Research indicates that around three months after adopting a behavior, adherence to that behavior starts to wane, and at six months, as many as 50 percent of people will no longer be adherent to the behavior. Therefore, one to three months after CR discharge is a good time to follow-up with the patient to assess smoking cessation, exercise, dietary outcomes, weight loss and medication adherence.

For purposes of the registry, programs are asked to collect follow-up data one (1) year from the date of CR enrollment. This will standardize the time frame to one year of treatment, independent of the time it takes a patient to enroll or the duration of the program. Of course, longer Phase 2 programs will have shorter follow-up intervals, but this policy will tell us something about program structure and overall outcomes at one year.

Q: Are we required to do follow-up on our graduated patients?
A: With the registry, we are trying to answer some very important questions about the long-term status of patients who participate in CR, so it is strongly recommended that participating programs collect follow-up information. We realize that not all programs have the resources to do intensive follow-up; however, even mailed surveys can be used to collect information on patients’ health status, and research has shown that periodic follow-up on patients can maintain health behaviors over the long term.

Q: Are we able to track patients who are referred to our program but who don’t enroll?
A: A field is included for the enrollment status of the patient. If the patient was referred but did not enroll, select "No" for the Enrolled? Field  and choose an option from the Reason for Not Enrolling list to describe why the patient did not enroll.

Your program’s enrollment rate can be an important quality/performance metric. In order to track this metric accurately, you’ll need to enter every patient for which your program receives a physician referral. Once you’ve determined a patient is not going to enroll in the program, you should enter his/her Enrolled status as No and enter a primary reason describing why he/she did not start. Also enter as much demographic, medical history, and clinical data you have on these patients, either from their referral forms or their medical records, as this data may help you understand what types of patients are less likely to enroll in cardiac rehabilitation (CR) and how to improve overall enrollment.

Q: How is “completion” of the rehabilitation program defined?
A: For the registry, we are defining completion as the patient having a final, formal discharge reassessment/evaluation and review of program goals and outcomes. If the patient does not receive this final evaluation, regardless of the number of exercise sessions they attended, they are considered “not complete” or a dropout.

Q: What if we do not have discharge lipid values to enter upon discharge of a patient?
A: Leave the discharge field blank if you do not have current information. DO NOT re-enter the same information from any admission values into the discharge fields. Please refer to the “Definitions and Comments for Selected Data Elements” for more information about pre and post lab values.

Q: We currently do follow-up on our patients using a mailed survey. Will we be able to continue to use this method?
A: Yes, you may use mailed surveys to collect information. In the registry, you will be able to identify which method you use for performing the one-year follow-up on your patients: in-person clinic visit, phone interview, or mailed survey. If you do not have the resources or structures in place to do clinic visits, research suggests that a phone interview may be more effective than mailed surveys. However, you will have to decide how best to accomplish follow-up on patients based on your program resources.

Q: If a patient smokes cigars but not cigarettes, what do we enter in the “Average Packs per Day” field?
A: If a patient uses other tobacco products besides cigarettes (chew, cigars, snuff), leave the “Average Packs per Day” field blank. You can enter the approximate number of years the patient has used the product.

Q: How will the 2014 American College of Cardiology/American Heart Association cholesterol management guidelines affect the registry?  Can we still track cholesterol levels of patients?
A: While we added some features in the Medications section to reflect these guidelines, we have also kept the Lipids fields and maintained the ATP III target levels in reports so that users can refer to both guidelines if needed.
The Registry includes and option list for the Statin/Prescribed section of the Medications page to reflect the current management guidelines.  You can select one of the following options:

  • Yes-High Intensity
  • Yes-Moderate Intensity
  • Yes-Low Intensity
  • Yes-Intensity Not Indicated
  • No
  • No-Exclusion
  • Unknown

The “intensity modifiers” are based on the new guidelines. Several new resources are available in the Registry to assist you in determining the intensity level, including a table on the Data Sheet and a separate “Resource for Statin Therapy” document.

Q: What is "Maximal" versus "Peak" METs?
A: For intake, Peak METs is the highest estimated MET level attained during the third CR session, derived from the workload on a treadmill, bike, etc., using appropriate American College of Sports Medicine equations. For discharge, this would be the highest estimated MET level attained during the last CR session or the discharge assessment session. Max METs is the highest MET level attained during a graded exercise test performed prior to or at entry into CR and/or at program discharge. Only enter values in the Max METs fields if your program conducts entry and discharge maximal exercise testing on your patients.

Q: I'm not able to enter a numeric value in a field because it is outside of the "accepted" range even though the value I want to enter is accurate.  What should I do?
A: Contact AACVPR at registry@aacvpr.org and describe the field and the value you're trying to enter.  We may adjust data validation thresholds up or down depending on user feedback and experience.

Q: Our patients are given only six sessions, not by their or our choice.  Will this affect our outcomes related to other programs or make our program outcomes look "bad"?
A: This should not be an issue with regard to the registry. Simply enter the number of “Prescribed Sessions” as "6". For “Sessions Justification,” you can select “Insurance,” “Protocol,” “Risk Stratification,” or “Other” to denote how those six sessions were determined.

Q: Can we use follow-up data that a patient self-reports?
A: Only documented or “known” values for clinical variables should be entered for follow-up data.
Values from a report given to the patient by a doctor or accessed in the patient’s electronic chart are acceptable. Approximate values are not; for example, if a patient says or writes, an LDL of “50 or so,” it cannot be used. Labs must include a date and the exact value. Exceptions to this rule are the self- reported number of minutes and days of exercise, dietary outcomes, medication adherence, tobacco abstinence status, and hospital admissions. You should be able to enter most assessment tool scores as well, as these can be done either over the phone or via mail and are self-reported and subjective. If obtained by phone or mail, some values will not be able to be entered, e.g., weight and blood pressure.

Q: On the registry data collection form, what are IFG and IGT?
A: IFG is “impaired fasting glucose,” determined from fasting glucose measurement. A fasting blood glucose between 100 and 125 mg/dl is considered IFG, or “pre-diabetes.” IGT is “impaired glucose tolerance,” determined from an oral glucose tolerance test. A blood glucose 140 to 190 mg/dl two hours after the 75-g oral glucose test is considered IGT.

Q: We do not measure waist circumference, only indicate if >40 for a man and >35 for a woman. Is that sufficient?

A: Waist circumference has been shown to be predictive of CAD, diabetes, and other health issues. Please enter only an exact measurement into the registry; guidelines for “Assessment by Waist Circumference” are available under “Registry Resources” when you log in to the registry. If you do not collect the exact measurement, leave the field blank. This is not a required field.

Q: Could you please define the AACVPR Risk Category and Risk Stratification?

A: Please refer to the “AACVPR Stratification Algorithm for Risk of Event,” available under “Registry Resources” when you log in to the registry. This document provides details on how to risk stratify patients based on several factors. This information also can be found in the current Guidelines for Cardiac Rehabilitation and Secondary Prevention Programs.

Q: We don't typically ask about a patient's level of education. Are we expected to add that to our patient interviews?

A: Education level is an important factor in CR enrollment and completion, health outcomes, adherence to behavioral changes, and medication adherence. While it is not mandatory to capture this, we are challenging programs to get this information from their patients. A simple statement such as, “In order to tailor your program to your needs, we would like to know the highest level of education you have achieved,” or, “We know that education level is a risk factor for cardiac rehab dropout. May I ask what level of education you have achieved so we can meet your needs successfully?” may be enough to gather this information.

Q: Is there any way to input data from a spreadsheet or tab delimited file into the registry, or must everything be manual data entry online?
A: For information on uploading data from Microsoft Excel, Microsoft Access, or csv files, please contact AACVPR at  registry@aacvpr.org for data specifications. You will need to submit a test sample of records for review prior to any file transfer.

Q: Is there a timeline for the follow-up data?
A: For the purposes of the registry, programs are asked to collect follow-up data one year from the date of CR enrollment. This will standardize the time frame to one year of treatment, independent of the time it takes a patient to enroll or the duration of the program. Of course, longer Phase 2 programs will have shorter follow-up intervals, but this policy will tell us something about program structure and overall outcomes at one year. Programs may conduct the follow-up assessment via in-person clinic visit, phone interview, or mailed survey. Please read the registry resource on “Performing Follow-up Assessments” for more detail.

Supported Assessment Tools

Q: What if we use different assessment tools than those supported in the registry? Would we need to change our assessment tools?
A: We do not expect any program to change its assessment tools if the program is comfortable with the tools it is using and the tools work for the program’s patients. You can continue to use your assessment tools; you just won’t be able to enter the scores into the registry. Many programs keep such data in a separate database or spreadsheet.

Q: Can we add a tool to the registry? We like our current tool.
A: We are always evaluating feedback from users. If we find that the addition of an assessment tool makes clinical sense or is backed up by evidence-based research, we may add it to the registry in the future. In the meantime, you will have to track these scores by some other means, such as a database or spreadsheet.

Q: Why is there no patient satisfaction survey tool within the registry?
A: Because many hospitals have their own procedures and questionnaires for evaluating patient satisfaction with services, we did not provide one in the registry. Also, because the various surveys ask different questions and measure different aspects of patient satisfaction, we could not provide a single field for the results, as it would be difficult to compare across programs.

Q: We use a psychosocial assessment tool that calculates a Yes or No score for positive for depression. Would we need to change our assessment tool?
A: No, you would simply track that data elsewhere.

Q: We use the 9-symptom checklist for depression inventory. I did not see that listed.
A: The registry currently supports the PHQ-9, the CES-D, the BDI-2, and the PRFS tools for depression screening.

Q: We currently use Orion Outcomes Software that has scoring capabilities within the program for various tools like Ferrans & Powers QOL Index, CES-D, patient satisfaction questionnaire, etc. Is that available within the AACVPR Registry?
A: No, you will need to obtain scoring methods and/or licenses for each assessment tool your program uses.

Q: Is there a patient satisfaction survey tool used within the registry?
A: Because many hospitals have their own procedures and questionnaires for evaluating patient satisfaction with services, we did not provide one in the registry. Also, because the various surveys ask different questions and measure different aspects of patient satisfaction, we could not provide a single field for the results, as it would be difficult to compare across programs.

Q: What version of the SF-36 quality of life tool is supported by the AACVPR Cardiac Rehab Registry?
A: The fields in the registry were designed for the SF-36 Version 2, Standard Form. This form of the SF-36 has several questions that start “During the past 4 weeks...”, and questions 4 and 5 have five possible responses instead of “Yes/No” responses.
 
Q: What do “MCS” and “PCS” stand for, and where do we get these scores from the SF-36?
A: The Mental Component Summary (MCS) and Physical Component Summary (PCS) scores are derived from the eight subscale scores of the SF-36. Most research on quality of life in cardiac rehabilitation that uses the SF-36 reports these scores. Two separate equations, with each subscale score given different weights, are used to calculate the summary scores. If you have a license for the SF-36, please contact Quality Metric for more information on how to obtain these scores.

Q: Can we use the SF-12 or SF-8 component summary scores instead of the SF-36?
A: The component summary scores (PCS and MCS) for the SF-36v2, SF-12v2, and SF-8 are comparable and the results from any of these may be entered in the Cardiac Rehab Registry.
Norm-based scoring standardizes the scores onto a common scale by creating a standard mean and standard deviation based on the general population (the average). All scales and summary scores are directly comparable and movement on the metric is equal for all scores.

Processes of Record Creation, Completion, Deletion

Q: What about programs that do not allow patients under 3 METs to participate? Will we be compared with programs like that?
A: You will be able to select the comparison group you want to be compared to, whether by size, state, or the entire registry. As we gain experience with the registry, we may add other comparison groups, such as academic centers or settings. It is also important to understand that only you will have the comparative data from your program. No one else will see how your outcomes compare with other benchmarks unless you share this information with them.

Q: If a patient is going through cardiac rehab for the second time (sessions 37–72), how do you differentiate record 1 for the first series from record 2?
A: This is a complicated question. If we assume that the “second time” is just an extension of the “first time” (i.e., no new events or referrals have occurred), then you wouldn’t create a new record; you are just extending the length of the first referral.

If, however, the patient has had another event that precipitates a new referral, you would create a new record. When you try to add a new patient record for a patient who already exists in the registry, you will be asked whether you want to proceed in entering the new record; select yes. The new record will differ from the previous record by the enrollment date and the unique registry ID.

DO NOT delete data that has been entered for the patient’s first enrollment or overwrite it with the new information, as you would no longer have a record of the previous enrollment.

Q: If a patient does not complete the CR program, do we have to enter their data into the registry? If so, how much of the data do we have to enter?
A: If a patient does not complete the CR program (defined as not receiving a final, formal discharge exercise assessment, review of secondary risk factors, and updated treatment plan), at a minimum you should enter as much demographic, medical history, program, and program admission data as possible. This information will be helpful in describing patients who drop out. Also be sure to enter the number of sessions the patient completed, the date of their last exercise session as the Discharge Date, and the reason for non-completion.

Q: How do we record information for a patient going through cardiac rehab again?
A: If you enter the medical record ID of a patient who is already in the registry, a warning message will be displayed and you will have three options: 1) cancel and enter a different medical record ID; 2) open the existing record for editing; or 3) continue to add the record to the database. Choose the third option to enter all new information for a patient’s second (or third or fourth, etc.) enrollment as needed. This will become a new patient record, though with the same medical record ID as the previous.

If you do not see an option in the warning message to add a new record for the patient, make sure the patient’s current or most recent record has been marked as either “Completed” or “Did not complete” in the Program tab and a discharge date has been entered (or last exercise session date if the patient is a dropout).  You MUST enter a medical record number (or other locally determined unique identifier) in order to add a second record; otherwise you will only have the option to modify the existing record.

Please DO NOT delete data that has been entered for the patient’s first enrollment or overwrite it with the new information, as you would no longer have a record of the previous enrollment.

Q: If a patient has a readmission or procedure during the course of his/her Phase 2 program, do we start a new record or continue the existing one?
A: It depends. Think of each record in the Registry as a referral and the outcome of that referral. If a patient has another event and a new referral is created AND you decide to start his/her program anew, create a new registry record. In the original record you would note that the patient did not complete the program, providing the reason for non-completion, the Discharge Date (the last exercise session attended), and the total number of sessions completed. You would not complete any other discharge information except for the Hospitalization section, noting the procedure or event that caused the hospitalization. Add a new record as you normally would through the Patient List page. When attempting to add the new record, you’ll see a warning message stating the patient already exists in the Registry. At this point you have 3 options: 1) You can cancel the transaction and return to the Patient List page; 2) you can open the existing record for editing, or 3) you can proceed to add the new record. Select the third option to add the new record.  You MUST enter a medical record number (or other locally determined unique identifier) in order to add a second record; otherwise you will only have the option to modify the existing record.

If you decide that you will simply extend the patient’s original program using the original referral from the first event/procedure, you would not create a new record. You would note the procedure/hospitalization on the Hospital Utilization tab in the patient’s existing record and complete the record when the patient ultimately graduates.

Note that you can create a new record on any existing patient for any reason as long as the previous record has been marked as either “Completed” or “Did not complete” and a Discharge Date has been entered.

Data Extraction Utilities

More information on this section coming soon.


Registry Sponsors & Development

AACVPR would like to thank the following sponsors of the Outpatient Cardiac Rehabilitation Registry for their support:

Founding Sponsor:

Additional support provided by: 


The Registry is being developed by Cissec Corporation of Kingston, Ontario, in cooperation with SmithBucklin and AACVPR.

Q: Who is Cissec Corporation?
A: Cissec Corporation, a Canadian-based software development firm specializing in healthcare technology, is responsible for the IT development of the AACVPR Outpatient Cardiac Rehabilitation Registry. Cissec is an experienced vendor that has created previous registries, including the Canadian Cardiac Rehab Registry of the Canadian Association of Cardiac Rehabilitation. AACVPR and the cardiac rehabilitation experts who make up its Registry Committee have developed the registry content and will oversee its operations.

Questions

Please direct any questions regarding the registry to AACVPR Headquarters at 312/321-5146 (select option 1) or registry@aacvpr.org.

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