2. Update of the NAQC Minimal Data Set Jessie E. Saul, Ph.D. Director of Research North American Quitline Consortium RaeAnne E. Davis, MSPH Co-chair MDS Assessment Workgroup Donna Czukar Director, Cancer Information and Support Canadian Cancer Society NAQC Conference Call Series, August 5 & 7, 2009

3. Objectives Review the process for developing the MDS and conducting the MDS Update Explore the purpose of the Updated MDS Examine changes to the MDS Review implementation materials (Implementation Guidebook) Timeline and next steps

4. PROCESS

5. Began discussions about a Minimal Data Set in 2003 National Network of Quitlines and 1-800-QUIT NOW as the national portal number in 2004 –Funding from CDC to help all states create/improve QLs MDS designed to create common language among quitlines –Finalized in May 2005 –Encouraged QLs to adopt in October 2005 MDS consists of: –Intake questions –Follow-up questions History of the MDS

6. Standardization of Data Important to collect data using standardized and valid techniques Allows for comparison across quitlines Ability to pool data for research and evaluation purposes on a larger scale Helps to develop service benchmarks Scientific rigor in a relatively new field of cessation services Provides foundation for data collection with other cessation programs in states/provinces

7. MDS Assessment One year after adoption, MDS workgroup reconvened to assess implementation Two-part assessment: process of implementation and item-by-item assessment Final Report contains six recommendations Report available at http://www.naquitline.org/Default.asp?page=technical

8. MDS Update - Goals Avoid large-scale overhaul Work with NAQC members through workgroup to ensure all member stakeholder groups have voice in process Improve the tool for measuring quitline process and outcome measures Improve the fidelity of implementation of the MDS

9. MDS Update - Process Start with Assessment report recommendations Identify “problematic” questions Align MDS items with new NAQC standards for calculating quit rates and reach Consult the literature and external experts Keep burden on quitlines as low as possible

10. MDS Update - Workgroup Erik Augustson, NCI Esther Baker, Iowa Tobacco Research Center Frankie Best, Ministry of Healthy Living and Sport, BC, Canada Donna Czukar, Canadian Cancer Society Ontario Division RaeAnne Davis, Chair Marti Engstrom, CDC Judy Ochs, Division of Tobacco Prevention and Control, Pennsylvania David Tinkelman, National Jewish Health Jennifer Woodrow, Newfoundland and Labrador Smokers’ Helpline Susan Zbikowski, Free & Clear, Inc. Barbara Zupko, CBRPE

11. MDS Update - Process Monthly workgroup meetings Identified major issues from Assessment report Identified additional items for revision Prioritized technical assistance topics Reviewed proposed changes and rationale on each call Consulted with experts between calls Finalized TA materials

12. PURPOSE

13. Why Update the MDS? Improve consistency and clarity of the MDS Keep MDS consistent with updated survey methods Align MDS with new NAQC standard calculations for reach and quit rates Address member questions and concerns with original MDS

14. Purpose of the Update Provide members with the best thinking on how to ask a core set of questions at intake and follow-up Provide material to serve as a starting point for discussions between funders and service providers Allow for continued collective improvement and standardization as a community of practice

15. The Update is NOT… …a requirement for all quitlines …an attempt to tell very smart people how to do their jobs …a lot of changes for the sake of making changes

16. Update Expectations Ideal scenario: all quitlines implement exactly the same way Realistic expectations: implementation will depend on –Needs –Resources –Unique environment Updates will be made as a continual process NAQC to provide TA as needed and requested

17. Our hopes for the Update Quitlines will view it as a tool to be used as best meets their needs Quitlines will take advantage of the opportunity to think critically about intake and follow-up questions Where possible, updates will be made to improve our collective ability to answer questions about quitlines

18. CHANGES

19. General changes Response categories more consistent and better defined Probes included to help increase data quality Clarification of when it is acceptable to assess a piece of information without directly asking a question (e.g., age, postal code) Some questions made optional

20. Wording changes “Do you smoke pipes?” changed to “Do you smoke a pipe?” “Chewing tobacco or snuff” modified to “Chewing tobacco, snuff, or dip”

21. Intake 2b 2005 MDS 2b. Are you: A health professional A friend or family member A community organization, worksite, insurance Other: __________ 2009 MDS Update Optional: 2b. Are you: A health professional A friend or family member A community organization, worksite, insurance Other: ___________

22. Intake 3 NAQC MDS Intake Question 3: How did you hear about the quitline? (DO NOT READ; CHECK ALL RESPONSES) MEDIA –Newspaper –Radio –Television –Internet/web Other selections can be added by quitline OTHER ADVERTISING –… Other selections can be added by quitline REFERRAL –… Other selections can be added by quitline Don’t know Refused Not asked Internet/web added to Media Subcategories should be used as a starting point List of potential response categories on NAQC website. Updated monthly. For additional assistance, contact NAQC at naqc@naquitline.org. naqc@naquitline.org

23. Types of tobacco use questions (Intake 5 series; Follow-up 2 series) “What types of tobacco do you use now or in the past 30 days?” Screener question for all types of tobacco Option 2 available to assess for cigarette use first, then other types later (appendix A) Asks about “now or in the past 30 days”

24. Types of tobacco use questions (Intake 5 series; Follow-up 2 series) 5a-e: Do you currently [use TYPE of tobacco] every day/daily, some days/occasionally, or not at all? Same question for cigarettes as original New questions for other types of tobacco Instructions to code “<1 cig/day” etc. as some day/occasional smoker deleted

25. Types of tobacco use questions (Intake 5 series; Follow-up 2 series) 5a-e(1): How many [TYPE OF TOBACCO] do you [USE] on the days/weeks that you [USE]? Same question for cigarettes as original New questions for other types of tobacco Instructions that <1/day or <1/week should be coded as some days/occasional in 5a-e deleted.

26. Types of tobacco use questions (Intake 5 series) 5a-e(2): When was the last time you [used TYPE of tobacco], even a puff/pinch? Same question for cigarettes as original New questions for other types of tobacco Coding of “unknown” responses changed, and probes added Critical question for quit rate calculation

27. Time to first tobacco use NAQC MDS Optional Question 7: How soon after you wake up do you use tobacco (other than cigarettes)? (DO NOT READ) Within five minutes 6 to 30 minutes 31 to 60 minutes More than 60 minutes Don’t know Refused Not asked New question for other tobacco products Validated measure for smokeless tobacco, but not for other types of tobacco Results should be interpreted with caution

28. Age started using tobacco regularly Intake optional Q9b-e: At what age did you start [using TYPE of tobacco] regularly? New questions for other types of tobacco Can be asked at intake or during counseling session

29. Sample intro script for demographic questions “Before we finish, I'd like to ask you some additional questions about yourself. {see script}… May I ask you these additional questions?” (entire text on page 12 of the comparison document) Combination of several sample scripts Designed to provide an answer to “why are you asking me these questions?” Can be modified by quitlines as needed Can be used at different places in the process, depending on question order

30. Education Clarified technical or trade school option for Canada response categories Some college, technical or trade school (includes any post-high school education, including technical or trade school, but not a degree)

31. Race/Ethnicity - US Added “or Spanish origin” to ethnicity question Modified response categories to more closely match US Census Clarified intent is to provide multi-select option Priority should be on reporting in MDS categories – recognizing some quitlines have good rationale for combining these two questions

32. Race/Ethnicity - Canada 17a: People living in Canada come from many different cultural and racial backgrounds. Are you (select all that apply) White, Asian, Black, Latin American, Arab, Aboriginal, Other New question Matches Canadian Census and Canadian Community Health Survey More closely matches US race question than original Canadian MDS race question

33. Race/Ethnicity – Canada (cont.) 17b (optional): Are you a member of an Indian Band/First Nation? 17c (optional): To which of the following ethnic or cultural groups did your ancestors belong? 17 b is a new question 17c is identical to the original MDS question for Canada. The Canadian census question does not list response categories (open response)

34. Sexual Orientation Optional Intake Q18: Do you consider yourself to be one or more of the following: [say the letter and the response option so that they can respond by either one] a) Straight b) Gay or Lesbian c) Bisexual d) Transgender [IF pause or refusal/none of above, also say: You can name a different category if that fits you better: _____________________] e) Other These are not read aloud, but are pre-coded as they were the most frequently chosen in our testing phase. i.Queer ii.Genderqueer iii.Dyke iv.other These are not read aloud, but are pre-coded as they were the most frequently chosen in our testing phase.

35. Follow-up abstinence questions 30-day abstinence question (#7) –identical to original except for adding “or pinch” –Critical item for calculating NAQC quit rate 7-day abstinence question (#8) –now optional Date of last use (#9-10a-e) –All tobacco together, or each type separately

36. Use of other assistance ORIGINAL MDS 11. Since your call to the quitline on (Date of first contact), seven months ago, have you used anything to help you quit? For example, nicotine replacement (gum or patch), pills (Zyban), group cessation, advice from a health professional, self-help materials? (yes/no) 12. Optional What kind of treatments or health professionals? MDS UPDATE 11. Since you first called the quitline seven months ago, have you used any of the following products or medications to help you quit? 12. Other than the quitline or medications, did you use any other kinds of assistance to help you quit over the past seven months, such as advice from a health professional, or other kinds of quitting assistance?

37. Administrative data Clarification provided regarding which items are to be reported and which are for internal quitline use Rationale provided for each item and how it might be used (annotated table, pages 35, 57)

38. TECHNICAL ASSISTANCE MATERIALS

39. Implementation Guide Access at www.naquitline.org, click on “Research and Data Sets,” then “Minimal Data Set,” then “MDS Technical Documents”www.naquitline.org

40. Implementation Guide Introduction Updated intake and follow-up questions Side-by-side comparison (old vs. new) “Annotated” table “What is the MDS?” FAQs

41. Additional Technical Assistance FAQs will be posted on the MDS Technical Documents page http://www.naquitline.org/?page=technical Individual TA available upon request – naqc@naquitline.org

42. NEXT STEPS

43. Rollout of MDS Update August 2009: “soft launch” August – October 2009: Review, detailed feedback from volunteer quitlines, changes to materials November 2009: “Hard launch” and re-release of all materials November 2009 – July 2010: Implementation of MDS Updates; TA provided by NAQC by request July 2010: suggested target for full implementation

44. Feedback from Members Are there MDS Update recommendations that are not clear? Do the technical assistance materials need to be changed? What additional materials/assistance would be most useful? As we go through the implementation process, what works and does not work?

45. QUESTIONS AND COMMENTS

46. Additional Information MDS Implementation Guide NEED WEB ADDRESS HERE Jessie Sauljsaul@naquitline.org RaeAnne Davisraeanne620@hotmail.com Donna Czukar Donna.Czukar@jcc.hhsc.ca NAQC Websitewww.NAQuitline.org