Update of the NAQC Update of the NAQC Minimal Data SetMinimal Data Set

Jessie E. Saul, Ph.D.Director of Research

North American Quitline Consortium

RaeAnne E. Davis, MSPHCo-chair

MDS Assessment Workgroup

Donna CzukarDirector, Cancer Information and Support

Canadian Cancer Society

NAQC Conference Call Series, August 5 & 7, 2009

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

PROCESS

• 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 MDSHistory of the MDS

Standardization of DataStandardization 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

MDS AssessmentMDS 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 athttp://www.naquitline.org/Default.asp?page=technical

MDS Update - GoalsMDS 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

MDS Update - ProcessMDS 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

MDS Update - Workgroup

Erik Augustson, NCIEsther Baker, Iowa Tobacco

Research CenterFrankie Best, Ministry of

Healthy Living and Sport, BC, Canada

Donna Czukar, Canadian Cancer Society Ontario Division

RaeAnne Davis, ChairMarti 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

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

PURPOSE

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

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

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

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

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

CHANGES

General changesGeneral 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

Wording changes

• “Do you smoke pipes?” changed to “Do you smoke a pipe?”

• “Chewing tobacco or snuff” modified to “Chewing tobacco, snuff, or dip”

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: ___________

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.

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”

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

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.

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

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

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

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

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)

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

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

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)

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) Straightb) Gay or Lesbianc) Bisexuald) 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. Queerii. Genderqueeriii. Dykeiv. other

These are not read aloud, but are pre-coded as they were the most frequently chosen in our testing phase.

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

Use of other assistance

ORIGINAL MDS11. 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 UPDATE11. 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?

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)

TECHNICAL ASSISTANCE MATERIALS

Implementation Guide

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

Implementation GuideImplementation Guide

• Introduction

• Updated intake and follow-up questions

• Side-by-side comparison (old vs. new)

• “Annotated” table

• “What is the MDS?” FAQs

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

NEXT STEPSNEXT STEPS

Rollout of MDS UpdateRollout 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

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?

QUESTIONS AND COMMENTS

Additional InformationAdditional Information

MDS Implementation GuideNEED WEB ADDRESS HERENEED WEB ADDRESS HERE

Jessie Sauljsaul@naquitline.orgjsaul@naquitline.org

RaeAnne Davisraeanne620@hotmail.comraeanne620@hotmail.com

Donna CzukarDonna CzukarDonna.Czukar@jcc.hhsc.caDonna.Czukar@jcc.hhsc.ca

NAQC Websitewww.NAQuitline.orgwww.NAQuitline.org