1. Some thoughts about minimal dataset Róbert Urbán Smoking Cessation Center Budapest

2. Why do we collect data? Characterizing the users of the service – users’ profile –demographic profile –smoking related profile Monitoring and evaluation –interim reports –final report to internal and external stakeholders Changes in tobacco behavior – efficacy data –feedback to counselors –information to stakeholders Dissemination of experiences and data –media –scientific publications

3. What type of data demographic data smoking related data general counseling related data efficacy related data (efficacy vs. effectiveness) client satisfaction awareness of quitline ad-hoc data

4. An example of one of our reports

5. An example of one of our reports (cont.)

6. An example of an ad hoc research in a quitline setting Communication about a quitline should concentrate on (1) to increase knowledge and understanding the roles of quitlines in quitting process among smokers (2) to debunk myths regarding willpower especially among men and (3) to decrease the stigma associated with help seeking in smoking cessation.

7. Barriers of data collection What makes it difficult? Any experience from your practice?

8. Barriers of collecting data Data collection is not easy –Difficulties in recording data during consultation –Lack of time for data collection –Confidentiality issues – ethical practice –Lack of expertise in data management and processing –Technical issues –Data collection is an extra burden on counselors –It also depends on the nature of quitlines (reactive or proactive; incoming call or referral or Internet registration) –It should be preplanned

9. What type of questions should we include in MDS? Mostly questions with precoded answers. Psychometrically sound questions (reliable & valid). Questions used in previous surveys for the comparability. Number of questions must not create barriers to providing services to our clients.

10. Basic questions at intake call / first call

12. Reason of calling How can I help you? (only for incoming call)  Help quitting  Help staying quit  Refer someone else  General information about service Just to confirm, are you calling for yourself, or calling on behalf of or to help someone else?  Calling for yourself for help with quitting  Calling for yourself but not for help with quitting  Calling on behalf of or to help someone else Are you?  A health professional  A friend or family member  A community organization, worksite, insurance  Other: _________________________________ Source: Campbell, et al. (2007). Minimal dataset for quitlines: a best practice. Tobacco Control, 16 (Suppl I): i16-i20) MDS Follow-up Questions 12-30-09 FINAL © North American Quitline Consortium, 2009

13. Awareness of quitline How did you hear about the quitline?  media (possibly more detailed options)  other advertising  referral (possibly more detailed options)  Other, such as …………………. Source: Campbell, et al. (2007). Minimal dataset for quitlines: a best practice. Tobacco Control, 16 (Suppl I): i16-i20)

14. Status – first time or repeat caller Is this your first call to the quitline in the past year?  Yes  No  Don’t know/Not sure  Refused How many times did you call the quitline in the past 12 months? ____ (# of times)  don’t know  refused  not asked Source: Campbell, et al. (2007). Minimal dataset for quitlines: a best practice. Tobacco Control, 16 (Suppl I): i16-i20) MDS Follow-up Questions 12-30-09 FINAL © North American Quitline Consortium, 2009

15. Smoking related questions

16. Smoking behaviors Do you currently smoke cigarettes?  every day  some days (if less than 7 days per week) (occasionally)  not at all (if some days) How many days did you smoke in the last 30 days? ____ days  Don’t know  Refused  Not asked Source: Campbell, et al. (2007). Minimal dataset for quitlines: a best practice. Tobacco Control, 16 (Suppl I): i16-i20)

17. Cigarettes per day (cpd) How many cigarettes do you smoke per day on the days you smoke? ____ cigarettes  don’t know  refused  not asked Source: Campbell, et al. (2007). Minimal dataset for quitlines: a best practice. Tobacco Control, 16 (Suppl I): i16-i20)

18. Any other tobacco products? What types of tobacco have you used in the past 30 days?  Cigarettes  Cigars, cigarillos, or little cigars  A pipe  Chewing tobacco, snuff, or dip  Any other type of tobacco Source: Campbell, et al. (2007). Minimal dataset for quitlines: a best practice. Tobacco Control, 16 (Suppl I): i16-i20)

19. How to measure the motivation to quit?: stages of change Are you seriously considering stopping smoking within the next 6 months?  Yes  No  Don’t know/Not sure  Refused Are you planning to stop smoking within the next 30 days? / Do you intend to quit within the next 30 days?*  Yes  No  Don’t know/Not sure  Refused Source: Starr G, Rogers T, Schooley M, Porter S, Wiesen E, Jamison N. Key Outcome Indicators for Evaluating Comprehensive Tobacco Control Programs. Atlanta, GA: Centers for Disease Control and Prevention; 2005. * Campbell, et al. (2007). Minimal dataset for quitlines: a best practice. Tobacco Control, 16 (Suppl I): i16-i20)

20. How to measure the motivation to quit?: number of quit attempts During the past 12 months, have you stopped smoking for one day or longer because you were trying to quit smoking?  Yes  No  Don’t know/Not sure  Refused Source: Starr G, Rogers T, Schooley M, Porter S, Wiesen E, Jamison N. Key Outcome Indicators for Evaluating Comprehensive Tobacco Control Programs. Atlanta, GA: Centers for Disease Control and Prevention; 2005. Variation: During the past 12 months, how many times have you stopped smoking for one day or longer because you were trying to quit smoking? …… times  Don’t know/Not sure  Refused

21. Past quit attempts How many times in the past have you made a serious quit attempt? What was the longest period of time that you were able to quit smoking? The most recent quit attempts: When was your most recent serious attempt to quit smoking? How long were you able to stay quit during your most recent quit attempts Sources: Farkas, Pierce, Zhu et al. (1996). Addiction versus stages of change models in predicting smoking cessation in California. Addiction, 91, 1271-1280.

22. Measure of addiction – heaviness of smoking index (HSI) How soon after waking do you smoke your first cigarette?  Within 5 minutes (3 points)  Within 30 minutes (2 points)  Within 1 hour (1 point) How many cigarettes do you smoke per day?  More than 30 per day (3 points)  21 to 30 per day (2 points)  11 to 20 per day (1 point) Source: Heatherton, T.F., Kozolwski, L., Frecker, R.C., Rickert, W., & Robinson, J. Measuring the heaviness of smoking: using self-reported time to the first cigarette of the day and number of cigarettes smoked per day. British Journal of Addiction. 1989. 84: 791-799.

23. Any other smoking related questions

24. Demographic variables Gender* Age (year of birth)* Zip (postal) code – location of residence* Highest level of completed education* Occupational status Marital status Ethnicity (if it is relevant) * Campbell, et al. (2007). Minimal dataset for quitlines: a best practice. Tobacco Control, 16 (Suppl I): i16-i20)

25. Follow-up Intent to treat versus treated clients

26. Client’s satisfaction

27. Clients’ satisfaction Overall, how satisfied were you with the service you received from the quitline?  Very satisfied  Mostly satisfied  Somewhat satisfied  Not at all satisfied  don’t know  refused  not asked Source: MDS Follow-up Questions 12-30-09 FINAL © North American Quitline Consortium, 2009

28. Clients’ satisfaction (cont.) If you were to seek help again, would you contact the quitline?  Yes, definitely  Yes, I think so  No, I don’t think so  No, definitely not  Don’t know  Refused  Not Asked If no, why not? ______________ (qualitative data) Source: MDS Follow-up Questions 12-30-09 FINAL © North American Quitline Consortium, 2009

29. Clients’ satisfaction (cont.) If a friend were in need of similar help, would you recommend the quitline to him/her?  Yes, definitely  Yes, I think so  No, I don’t think so  No, definitely not  Don’t know  Refused  Not Asked If no, why not? ______________ (qualitative data) (if yes, why? ______________ ) Source: MDS Follow-up Questions 12-30-09 FINAL © North American Quitline Consortium, 2009

30. Changes in tobacco behavior

31. Outcome indicators: abstinence related Continuous abstinence: abstinence between quit day and a follow-up time. –6-month continuous abstinence Prolonged abstinence: sustained abstinence after an initial grace period or to a period of sustained abstinence between two follow-ups Point prevalence abstinence: abstinence during a time window immediately preceding: –7-day abstinence at 6 months after quit date –30-day abstinence at 6 months after quit date Repeated point prevalence: point prevalence abstinence at two or more follow-ups between which smoking is allowed. point prevalence > repeated point prevalence > prolonged abstinence > continuous abstinence Source: Hughes JR, Keely JP, Niaura RS, Ossip-Klein DJ, Richmond RL, Swan GE. Measures of abstinence in clinical trials: issues and recommendations. Nicotine and Tobacco Research. 2003;5(1):13–25.

32. Questions Have you smoked any cigarettes or used other tobacco, even a puff or pinch, in the last 30 days?  Yes  No  Don’t know  Refused  Not asked Have you smoked any cigarettes or used other tobacco, even a puff or pinch, in the last 7 days? Yes  No  Don’t know  Refused  Not asked Source: MDS Follow-up Questions 12-30-09 FINAL © North American Quitline Consortium, 2009

33. Any other tobacco products? What types of tobacco have you used in the past 30 days?  Cigarettes  Cigars, cigarillos, or little cigars  A pipe  Chewing tobacco, snuff, or dip  Any other type of tobacco Source: Campbell, et al. (2007). Minimal dataset for quitlines: a best practice. Tobacco Control, 16 (Suppl I): i16-i20) MDS Follow-up Questions 12-30-09 FINAL © North American Quitline Consortium, 2009

34. Smoking behaviors Do you currently smoke cigarettes?  every day  some days (occasionally) (if less than 7 days per week)  not at all  Don’t know  Refused  Not Asked Source: Campbell, et al. (2007). Minimal dataset for quitlines: a best practice. Tobacco Control, 16 (Suppl I): i16-i20) MDS Follow-up Questions 12-30-09 FINAL © North American Quitline Consortium, 2009

35. Smoking behaviors How many days did you smoke in the last 30 days? ____ days  Don’t know  Refused  Not Asked MDS Follow-up Questions 12-30-09 FINAL © North American Quitline Consortium, 2009

36. Cigarettes per day (cpd) How many cigarettes do you smoke per day on the days you smoke? ____ cigarettes  don’t know  refused  not asked Source: Campbell, et al. (2007). Minimal dataset for quitlines: a best practice. Tobacco Control, 16 (Suppl I): i16-i20) MDS Follow-up Questions 12-30-09 FINAL © North American Quitline Consortium, 2009

37. Quit attempts Since you first called the quitline, seven months ago, did you stop using tobacco for 24 hours or longer because you were trying to quit?  Yes  No  Don’t know  Refused  Not asked

38. Medication use Since you first called the quitline seven months ago, have you used any of the following products or medications to help you quit?  Nicotine patches  Nicotine gum  Nicotine lozenges  Nicotine spray  Nicotine inhaler  Zyban (also called Wellbutrin or bupropion)  Champix (also called varenicline)  Other medications to help you quit? (if yes, please specify):__________________  No products or medications  Don’t know  Refused  Not asked Source: MDS Follow-up Questions 12-30-09 FINAL © North American Quitline Consortium, 2009

39. 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?  Advice from a health professional  Website  Telephone program  Counseling program  Self-help materials Source: MDS Follow-up Questions 12-30-09 FINAL © North American Quitline Consortium, 2009

40. Further problems to be discussed Other tobacco products should be included? Dealing with different languages –Translation – backtranslation Building up electronic database –preferred program: Excel, SPSS, STATA, SAS, or other –Training if it is needed. How to record the data –pen and paper + data entry –Electronic system –Internet based system Others

41. Thank you!