FREQUENTLY ASKED QUESTIONS MINIMAL DATA SET (MDS)

FREQUENTLY ASKED QUESTIONS MINIMAL DATA SET (MDS) Date in parentheses is the date the question was added to the list or updated. Last update 6/25/05 DEFINITIONS 1. What counts as the first call? (6/24/05) 2. Who counts as a new caller? (6/24/05) 3. What does already quit mean? (6/24/05) 4. What is the definition of "eligible population"? (6/24/05) 5. What is the definition of reach? Do all quitlines need to calculate this in the same way? (6/24/05) 6. How is reach different from utilization? (6/24/05) SPECIFIC INSTRUMENT ITEMS 7. Q7 For other tobacco products, should the measurement of use be per day or per week? (6/24/05) 8. Q15 - Highest education level should the technical/trade school option be there only for Canadian quitlines? (6/24/05) 9. Q16 and Q17: Is it okay to continue tracking Hispanic/Latino ethnicity via a more general question regarding ethnicity? (6/24/05) PROCESS 10. Do we have to ask the MDS questions in the same order as listed in the instrument provided on the NAQC website? (6/25/05) 11. When does the 7 month follow up timeline start? (6/24/05) 12. Who is the target group for the 7 month evaluation data? Should ALL first time callers be attempted for contact, or will a random sample of this group suffice? (6/24/05) 13. Other than assessing quit status at 7 months after the first call, is there a standard protocol for follow-up survey data collection? What is the recommended window of time for completing the 7 month followup survey? (6/24/05) 14. How do I provide my feedback about the MDS implementation process? What if something is just not working for us? (6/24/05) REQUIREMENTS 15. Is the MDS only aimed at State-funded quitlines, or is every quitline in North American expected to adopt the MDS? (6/24/05) 16. Do we need to separate smoker from tobacco user for questions on quit attempts, quit

intentions/stage of change, or methods used to quit? (6/25/05) 17. Do we need to collect data on co-morbid conditions including mental illness, alcohol use, or use of other drugs? (6/25/05) 18. We currently measure quit outcomes at 12 months. Do we have to change from a 12 month follow-up to a 7 month follow-up? (6/24/05) 19. Are we really responsible for implementing every part of the MDS by September 2005? (6/25/05) 20. Can we just collect the MDS items that are relevant to our quitline, or do we need to collect every item? (6/25/05) 21. What happens if we choose not to implement the MDS? (6/25/05) EVALUATION 22. Do we need to hire an independent evaluator to conduct the follow-up survey? (6/25/05) REPORTING 23. Are we required to collect caller characteristic information (e.g., demographic data) on proxy callers as well as tobacco users? (6/24/05) 24. When will the states and provinces be expected to share their results, and how will the data need to be presented? (6/24/05) RESOURCES 25. Will NAQC review our intake or follow-up questions for us? (6/25/05) 26. If there are extra costs associated with implementing the MDS, will NAQC provide supplemental funding? (6/25/05) DEFINITIONS 1. What counts as the first call? ANSWER: The first call counts as the first call where a caller speaks to a live person. This includes both a screening and intake call whichever comes first. Screening could include motivational screening trying to find out what type of help the person is looking for. If a caller calls during a busy time and leaves just a name and phone number, but does not do any assessment, motivation, etc. this would not count as the first call. For quitlines that are reactive only (caller leaves name and phone number and receives a call back from

a counselor or intake specialist at a later time), the first call counts as the first time the counselor/intake specialist talks to the person at the call back. Similarly, for quitlines that generally have live counselors available, during periods of high call volume where callers are asked to leave their name and number for a counselor to call them back later, the first call counts as when the counselor calls the person back, not when the caller leaves their name and number, if that is all the information that is exchanged. The first call is important as a measuring point for the 7 month follow-up. The first call does not necessarily equate to a call where counseling is provided. Number of calls completed may or may not include the first call depending on whether or not advice or counseling is provided. 2. Who counts as a new caller? Any caller who receives services from a quitline should only be counted as a new caller once within a 12 month period. Regardless of the eligibility criteria for provision of services, it should be determined at the first call whether the caller has received services in the past 12 months. If he/she has received services, and is eligible to receive services again as per the individual quitline s policies, he/she should only be counted once per that 12 month period to determine reach, numbers of callers, etc. If a caller calls outside of 12 months from their past first call they can be counted as a new caller and provided services (or not) as per the individual quitline s policies. Currently, the MDS includes question #4: Is this your first call to the quitline in the past year? Self-reported first-time call status is the only method to verify new callers unless quitlines can verify this with their own records or tracking mechanisms. The MDS does not require this level of tracking capabilities. 3. What does already quit mean? Answer: Already quit is defined for the MDS as anyone who responds that they are currently smoking not at all (Q5a for the intake instrument, and Q2a for the follow-up instrument). Quitlines are encouraged to add questions that will allow them to collect data about callers quitting patterns and reasons for calling, such as whether they are calling for assistance with a new quit attempt, or whether they are calling for help to maintain their quit status, but such questions are not required by the MDS. Already quit does not distinguish between callers who have been quit for 5 minutes, 5 days, or 5 months they should all be counted in the category already quit. 4. What is the definition of "eligible population"? ANSWER: Quitlines are responsible for defining "eligibility" for services, and for reporting the numbers and percentage of "current smokers" and "current users of other tobacco products." Since each quitline has different definitions of target populations, MDS is not providing a definition of "eligible

callers." Whatever eligible means to the quitline is the definition each quitline should use. Each quitline should also clearly state what the eligibility requirements are for their callers in any reporting of reach or population served. 5. What is the definition of reach? Do all quitlines need to calculate this in the same way? ANSWER: Reach is defined by the MDS as the proportion of the target population who contact the quitline. It should be calculated by taking the number of current and abstinent tobacco users who contact the quitline for help with quitting or staying quit (this may be larger than the number of people who register or who receive services) divided by the number of adult tobacco users in the target population. Each quitline may define its target population in a different way. This is fine, as long as how the target population is defined is clearly stated in any reporting of reach. Where the total number in the target population is unknown, population surveys can be used. If a quitline s target population is not the total population of adult tobacco users in a state, a different denominator should be used. If there is more than one quitline operating in a state, each quitline is only responsible for calculating its own reach within its own target population. 6. How is reach different from utilization? ANSWER: Reach is defined by the MDS as the proportion of the target population who contact the quitline (see the answer to #4 above). Utilization is the proportion of the target population who are served. Currently MDS is only requiring quitlines to report reach, but it may be very helpful to also report utilization as an optional data point, provided all quitlines calculate utilization in the same way. SPECIFIC INSTRUMENT ITEMS 7. Q7 For other tobacco products, should the measurement of use be per day or per week? ANSWER: Number of cigarettes should still be measured per day. For cigars, pipes, chewing tobacco, and other tobacco, the measurement should be per week. The MDS response categories for Q7 have been altered from the original release. They now read: cigars (number per week) pipes (number of bowls per week) chewing tobacco or snuff (number of pouches/tins per week) other tobacco (amount per week) 8. Q15 - Highest education level should the technical/trade school option be there only for Canadian

quitlines? ANSWER: To be compliant with OMB standards, US Categories should remain the same, and should include technical and trade schooling and degrees as follows: Less than grade 9 Grate 9 to 11, no degree GED High school degree Some college or university (Note: this category includes any post-high school education, including technical or trade school, but not a degree.) College or university degree (includes AA, BA, Masters, Ph.D.) If some quitlines desire more specific subcategories, they can add additional subdivisions of the categories listed above for their use and then collapse them into these categories for MDS use. 9. Q16 and Q17: Is it okay to continue tracking Hispanic/Latino ethnicity via a more general question regarding ethnicity? We inform our callers that they may choose more than one category to describe their race or ethnicity when we ask this question. We are concerned about asking specifically about Hispanic/Latino ethnicity and would prefer to leave this within the current, general (single) question regarding ethnicity. Given our data system, we will be able to drill down on subgroups within the population without creating a specific question related to Hispanic/Latino ethnicity. ANSWER: The MDS encourages all quitline services to ask ethnicity questions in the same way as indicated on the MDS intake form. These questions match the new OMB recommendations to allow comparisons with the census. Under the new OMB standards, "Hispanic or Latino" is clearly designated as an ethnicity and not as a race. Whether or not an individual is Hispanic, every effort should be made to ascertain the race or races with which an individual identifies. The two-question format, with the ethnicity question preceding the race question, should be used when information is collected through self-identification. Although the standards permit the use of a combined question when collecting data by observer identification, the use of the two-question format is strongly encouraged even where observer identification is used. There has been one slight change made to the response categories for the ethnicity question (Q16): The question will now read (for USA) "Are you Hispanic or Latino?" The response categories should be Yes, No, Refused, Not ascertained. "Not ascertained" has been added as a response category to differentiate between those who refuse to answer and other reasons for not ascertaining ethnicity. A suggestion was made by the MDS working group to add an optional follow-up question to that response category: an open text field where the reason for not ascertaining race could be entered. Don t know

PROCESS could be a reason entered in the text field for reason why not ascertained. Please see the revised intake and follow-up forms on the NAQC website for the most recent version of the instruments. The race question (Q17) is fine as-is, although several optional follow-up questions have been added, and the response none of the above has been deleted. For those who answer "Asian" "Native Hawaiian or pacific islander" or "Other" there are further (optional) sub-groupings of each of those categories. The revised version of the intake questions includes all the optional questions and subcategories. When writing the script for Q17, it may be helpful to write out exactly what will be asked, and include the response categories. For example: Which of these groups would you say best describes you? Select one or more of the following: White, black or African American, Asian, Native Hawaiian For those callers who identify Hispanic as race for Q17 and will not specify anything else despite being asked, they should be coded under other with specification as Hispanic. This is an ongoing discussion, and while the OMB categories are not ideal, they are what we are using for now to ensure comparability. NAQC will be considering this issue as we move forward. If there are further questions about this issue, please send them to mdsquestions@americanlegacy.org. It should be noted that if a quitline chooses to record responses for the "other" category, some of those responses may need to be re-coded back into other racial categories. For example, if a respondent says "other" and when asked replies that he/she is "Vietnamese," that may need to be recoded as "Asian" rather than "other." 10. Do we have to ask the MDS questions in the same order as listed in the instrument provided on the NAQC website? ANSWER: Ideally, yes. However, NAQC has prioritized asking all of the MDS questions using the MDS suggested wording over asking the MDS questions in the proposed order. Quitlines should feel free to adapt the order to their own models according to what works best for the services that are provided. 11. When does the 7 month follow-up timeline start? When we implement the MDS collection process on September 1, 2005, will we be expected to begin the 7 month evaluation process at the same time, or will there be a grace period for the follow-up evaluation such that this process occurs 7 months later (April 2006)?

ANSWER: Implementation of MDS intake questions will begin in September. The starting clock for the 7 month follow up begins when you collect your first intake data. Seven months after that first intake with MDS questions we would expect you to start collecting 7 month follow-up data (April 1, 2006). We would not expect you to start collecting follow-up data on callers for whom you do not have MDS intake data. 12. Who is the target group for the 7 month evaluation data? Should ALL first time callers be attempted for contact, or will a random sample of this group suffice? ANSWER: Each quitline will need to determine how follow-up will be conducted, and on which population. A random sample will suffice if that sample is large enough to provide meaningful results for the sample overall, or for subsamples such as male and female separately. Some quitlines serve enough people that it would be impossible to survey every caller. Some quitlines do not have the capacity to conduct complex statistical analyses to determine whether they have a representative sample in a sub-population of callers. Each quitline should strive to survey enough people to draw valid conclusions about their outcomes, but it will be up to the individual quitline to determine whether census surveying, random sampling, cohort sampling, or some other sampling method will be most appropriate. 13. Other than assessing quit status at 7 months after the first call, is there a standard protocol for follow-up survey data collection? What is the recommended window of time for completing the 7 month followup survey? ANSWER: The MDS recommends completing the 7 month follow-up call plus or minus 2 weeks from the 7 month anniversary of the first call. Call attempts should begin at 6 ½ months, and ideally should end by 7 ½ months to ensure maximum comparability of data. Quitlines should strive for this contact rate, but MDS is not recommending that call attempts end at the 7 ½ month mark. However, average time to completion of the 7 month follow-up survey should be reported with any quit outcome data to allow for consideration that a longer average follow-up time may impact quit rates. MDS requires collection of both the date of first contact with the quitline and the date of the evaluation interview, which will allow for calculation of average time to follow-up. 14. How do I provide feedback about my experiences implementing the MDS? What if something is just not working for us? ANSWER: Any comments, questions, concerns, or feedback should be directed to mdsquestions@americanlegacy.org. NAQC is very interested in hearing how the process of implementation is going, and whether it can provide any additional assistance to quitlines as they go through this process.

REQUIREMENTS 15. We operate a quitline, but we are not affiliated with our state s Department of Health. Is the MDS only aimed at State-funded quitlines, or is every quitline in North American expected to adopt the MDS? ANSWER: Any quitline that is interested in participating in NAQC research activities, or in being able to contribute to improving the standards of quitlines in North America is invited and encouraged to adopt the MDS. Adoption of the MDS will make it easier for states to report on the efforts and achievements of all quitlines, and thereby provide a more accurate picture of the reach and effectiveness of the state as a whole to improve the health of its citizens and helping people to quit using tobacco. 16. Do we need to separate smoker from tobacco user for questions on quit attempts, quit intentions/stage of change, or methods used to quit? ANSWER: MDS asks about quit attempts, quit intentions/stage of change, and methods used to quit for all forms of tobacco. It does not distinguish between the various forms of tobacco at this time. Some quitlines do measure these items for all forms of tobacco used. NAQC is accepting suggestions for optional questions that would distinguish these items for other forms of tobacco as well. Send all suggestions to mdsquestions@americanlegacy.org. 17. Do we need to collect data on co-morbid conditions including mental illness, alcohol use, or use of other drugs? ANSWER: Data on co-morbid conditions are not required by MDS, because counselors are not trained to provide interventions to callers with those conditions. However, as with any question, quitlines are free to collect this information. 18. We currently measure quit outcomes at 12 months. Do we have to change from a 12 month follow-up to a 7 month follow-up? ANSWER: No quitline is required to remove any follow-up measurement points from their protocols. The MDS is recommending a 7 month follow-up rather than a 13 month follow-up (12 months allowing for 1 month of intervention provision) for reasons of resource availability. In cessation research, the generally-accepted gold standard is a 12 month follow-up. However, the longer one gets from the time of intervention, the more difficult, and costly, it is to reach participants. Because NAQC recognizes that quitlines have different levels of resources, it is recommending at minimum only one follow-up time point. Because of the difficulties associated with long-term follow-up, NAQC is recommending a 7

month follow-up (6 months allowing for 1 month of service provision). If quitlines have the resources to conduct multiple follow-up surveys, they are welcome and encouraged to do so. 19. Are we really responsible for implementing every part of the MDS by September 2005? We are just getting started, and there is so much to do. Can we implement in stages? ANSWER: Implementing the MDS is a voluntary activity. Quitlines should aim to have the intake questions implemented by September 1. Data collection infrastructure de-bugging and implementation of follow-up survey questions or evaluation protocols can be ongoing after September 1 with a target implementation of the follow-up survey data collection April 1, 2006 (7 months after the September 1, 2005 intake data collection target). 20. Do we have to use the same coding/variable names contained in the data dictionary? (LINK TO DATA DICTIONARY) ANSWER: Having all/most quitlines use the same variable names or data dictionaries will allow for the greatest number of possibilities in terms of large-scale research projects. However, NAQC realizes that particularly for vendors and evaluators who have their own database, recoding every variable can be impractical, prohibitively expensive, or simply not a high priority. Implementation of the MDS is voluntary, as is adopting the use of suggested variable names. NAQC recommends that new quitlines that have not yet assigned variable names adopt the MDS recommended codes to avoid any costly conversions later on. For those who are changing questions or adding variables, NAQC recommends that as many variables be adopted as possible, and that full adoption of the MDS variable names be a long-range goal of quitlines, but changing codes/variable names should not be prioritized at the cost of delaying implementation of the MDS. NAQC and other research bodies will make every effort to provide conversion formulas to facilitate data collection and comparison across quitlines for research purposes, but all providers are encouraged to move toward adoption of the variable names as it is possible. 21. Can we just collect the MDS items that are relevant to our quitline, or do we need to collect every item? ANSWER: Implementing and using the MDS is a voluntary activity. The MDS can be implemented in stages. However, the MDS working group intentionally limited the items on the MDS to the minimum they deemed necessary based on the need to collect comparable data, make quality improvements, etc. Most, if not all, items will be relevant to your quitline. You may want to ask the technical assistance provider about specific items you have questions about. Send any questions to mdsquestions@americanlegacy.org. Please allow 72 hours (3 business days) for a response.

22. What happens if we choose not to implement the MDS? ANSWER: Implementation of the MDS is a voluntary activity. Therefore, there are no penalties for choosing not to implement the MDS. However, NAQC strongly encourages all quitlines that are able to move to implement the MDS because of the benefits it confers: comparability to other quitlines, credibility/legitimacy of the quitline, potential to be included in research using the same data points, and inclusion among other quitlines also using the same standard of care. EVALUATION 23. Do we need to hire an independent evaluator to conduct the follow-up survey? ANSWER: No. It is important that all evaluation/follow-up data in the MDS be collected, but NAQC is not recommending that every quitline hire independent evaluators. It will be up to each individual quitline to assess the resources available, the priority it places on independent evaluation, the evaluation services provided by the vendor, the resources it would require to change current protocols, the benefits of independent evaluation (e.g., increased credibility) versus the costs (e.g., dollars, resources, or delay of implementation). REPORTING 24. Are we required to collect caller characteristic information (e.g., demographic data) on proxy callers as well as tobacco users? Should we capture characteristic data for all callers (tobacco users and others), or is it possible to collect it only for a subset of the caller population (e.g., tobacco users only)? For instance, we are currently asking the characteristic data of tobacco users calling on their own behalf. We do not ask proxy callers for this data. We understand that we need to ask this for "eligible" callers, and that we can define "eligibility". I am asking the question because our team had a great debate today about the value of capturing this data for all callers, verses only those who would benefit from proactive cessation counseling. Did the evaluation committee have a definition or description of "eligible population"? ANSWER: MDS asks quitlines to collect characteristic data for all eligible callers. Quitlines are not required to collect characteristic data for "other contacts" which include health professionals calling for information or to refer patients; proxy callers calling on behalf of, or to help, a smoker; or "other" including admin, hang up, wrong number, crank, etc. Quitlines should be able to report how many of each kind of "other contact" calls they receive, not are not required to collect any other information from those callers.

Quitlines are responsible for defining "eligibility" for services, and for reporting the percentage of "current smokers" and "current users of other tobacco products." Since each quitline has different requirements of target populations, MDS is not providing a definition of "eligible callers." Whatever eligible means to the quitline is the definition each quitline should use. Each quitline should also clearly state what the eligibility requirements are for their callers in any reporting of reach or population served. 25. When will the states and provinces be expected to share their results, and how will the data need to be presented? ANSWER: For the immediate future, states and provinces will be asked to share some information in the aggregate to allow NAQC members to get a better picture of what quitlines in North America are doing, and how they are performing. NAQC will be developing a reporting form for those purposes. In the future, NAQC may ask that quitlines share their data with a centralized source, but many issues will need to be worked out with all quitlines providing input and feedback (e.g., privacy issues, data security, standardization of variable names, etc.). These conversations will be occurring over the coming year. RESOURCES 26. Will you review our intake or follow-up questions for us? ANSWER: NAQC is providing technical assistance by email for any quitline implementing the MDS. Send questions to mdsquestions@americanlegacy.org. Please allow 72 hours (3 business days) for a response. 27. If there are extra costs associated with implementing the MDS, will NAQC provide supplemental funding? ANSWER: NAQC is not in a position to provide funding for implementation activities. Implementation of the MDS is strictly a voluntary activity. However, NAQC strongly encourages all quitlines that are able to move to implement the MDS because of the benefits it confers: comparability to other quitlines, credibility/legitimacy of the quitline, potential to be included in research using the same data points, and inclusion among other quitlines also using the same standard of care.