Prevention of Attrition Keys to Successful Cohort Maintenance

1. University of California, Berkeley Prevention of AttritionKeys to Successful Cohort Maintenance Patricia B. Crawford, DrPH, RD Adjunct Professor Co-Director, Center for Weight and Health University of California, Berkeley

2. University of California, Berkeley

3. University of California, Berkeley Mission Provide leadership for the development of interdisciplinary, science-based solutions to body weight- and health-related problems, with a current focus on the prevention of pediatric overweight http://www.cnr.berkeley.edu/cwh

4. University of California, Berkeley • Literature reviews and synthesis • School-based intervention studies • Resources and materials for communities • Conducting and translating epidemiologic studies • Community-based intervention studies http://www.cnr.berkeley.edu/cwh

5. University of California, Berkeley Berkeley San Francisco

6. University of California, Berkeley Berkeley Longitudinal Nutrition Study (BLNS) Aim: To examine the development of childhood obesity from birth to 5 years Design: Longitudinal study Measurements: Anthropometry, food and activity records and interviews, lipid profiles, underwater weighing.

7. University of California, Berkeley Berkeley Longitudinal Nutrition Study Retention

8. University of California, Berkeley 1980’s Overweight among black women was significantly higher than among white women and they experienced higher CVD mortality rates.

9. University of California, Berkeley

10. University of California, Berkeley NHLBI Growth & Health Study (NGHS)1987-1992(funded by National Institute of Heart, Lung & Blood, NIH) Aim: to track the development of obesity and other cardiovascular risk factors and to identify biological, social and psychological correlates of these risk factors. Measurements: diet, physical activity, anthropometry, self esteem and other psychosocial factors, blood pressure, lipids, glucose, insulin, health beliefs and attitudes, and family environment measures

11. University of California, Berkeley General Description of NGHS • Design: • Prospective multi-site biracial cohort study • Subjects: 2379 girls • 1213 black • 1166 white • Ages: 9-10 years at baseline

12. University of California, Berkeley Locations • Richmond, California • Cincinnati, Ohio • Washington, DC area

13. University of California, Berkeley Richmond Berkeley San Francisco

14. University of California, Berkeley Richmond, California* • Population: ~100,000 • 16% of the population below poverty line • High unemployment approaching 10% • Over 1,000 violent crimes/year *statistics from 2003-2006

15. Recruitment Strategies • Richmond: census sample of girls enrolled in schools encompassed by Richmond Unified School District • Cincinnati: Sampled at school level • Washington, DC area: random sampling of HMO members with a few added volunteers.

16. University of California, Berkeley NGHS Retention Rates by site

17. University of California, Berkeley Percentage of girls not seen by reason by site

18. Minimizing Attrition • External validity • Internal validity • Statistical power

19. Prevention of Attrition • Recruitment strategies • Traditional retention strategies • Key to success: enhanced strategies

20. University of California, Berkeley Traditional Strategies – to Prevent Attrition Refs: Aylward 1985; Goldman 1982; Gwadz 1992; Katz 2001; Lloyd 1999; Orr 1992; Pirie 1989; Psaty 1994; Senturia 1998

21. University of California, Berkeley Traditional Strategies to Prevent Attrition Incentives Communication Special Methods Tracking Staff Characteristics

22. Keys to Success University of California, Berkeley Communicate values, expectations, plans, etc. Pilot test Incentives Communication Special Methods Tracking Develop refusal conversion system Develop comprehensive tracking system Staff Characteristics Hire culturally sensitive, respectful, flexible staff

23. University of California, Berkeley 1. Staff Hiring • Culturally sensitive • Flexible • Respectful • “Customer” is always right

24. University of California, Berkeley 2. Development of Tracking Systems • Annual update and expansion of contact information • Call records • Hire a sleuth, problem solving, obsessive-compulsive interviewer

25. University of California, Berkeley _________________________________________________ TRADITIONAL CALL RECORD for Participant 1181 – Luann Stipes _________________________________________________ 1/9/98 — No answer. 1/10/98 — No answer. 1/12/98 — Called parents. No answer. 1/14/98 — Called parents. Wrong number. Called mother-in-law who said Luann has moved back Antioch. Her phone number there is (555) 573-2730. 1/15/98 — Called Luann. No answer. 1/16/98 — Reached Luann and scheduled her for Saturday, Jan. 27th at 11 am. Need to mail directions and date/time of appointment.

26. CALL RECORD for Alicia Green 400 39th St., Richmond, CA 94804 -(510) 777-5010 • 3/4/98—1:35 pm—666-7777 is disconnected. • Tried father at (510) 888-9999. Left no message on answering machine. • 5:40 pm—Called father’s number and reached Alicia’s brother. She does not • have a phone, can be reached through this number. He said he’d relay a message. He said she can be reached at this number between 1 and 3 pm. I told him I’d try tomorrow. He said he’d relay the message. • 3/5/98—1:00 pm--busy signal • 1:20 pm—Reached Alicia. She is living with Dad and about to move into her own house. Seemed pleased to hear from me. Cooperative. busy now, but call next week. • 3/12/98—1:30 pm—Answering machine, did not leave message • 3/13/98 - 4:00 pm—Reached brother. Alicia has moved to own place. Got her phone number, 111-2222. Number is not in service. • 3/14/98—7:00 pm—Tried Alicia’s number again. Still not in service. Called brother; reached father this time. He doesn’t have number for Alicia. Also says he doesn’t have her new address. Says I can call tomorrow morning at 10:00 am. • 3/15/98—10:05 am—Reached brother. Alicia does not have a phone. Gave me her address: 2121 5th Street in Richmond. Sent Alicia a note with my phone number, asking her to call me. • 3/29/98—6:00 pm—Went to Alicia’s address. She was home and very happy to hear from us again. Scheduled her for clinic on 4/7 at 11:00 am. She is happy to have her own place, lives with her son. • 4/7/98—Alicia came to clinic. Everything went well. Really cute little boy, named DeVonne.

27. University of California, Berkeley 3. Pilot Testing

28. University of California, Berkeley 4. Development of a Refusal Conversion System • Hire/designate a specialist • Use all information from past call records • Take participants’ reservations seriously • Minimize number of contacts • Take the long view on participation • Empathize, listen

29. University of California, Berkeley 5. Communication • Plan for retention, revise as needed • Share what works • Values, study goals, results • High expectations

30. Key to success: leadership University of California, Berkeley Communicate values, expectations, plans, etc. Pilot test Incentives Communication Special Methods Tracking Develop refusal conversion system Develop comprehensive tracking system Staff Characteristics Hire culturally sensitive, respectful, flexible staff

31. Plan and budget recruitment, tracking, cohort retention, refusal conversion Hire culturally sensitive interviewers with excellent communication skills Designate (or hire) specialized tracker and refusal converter staff Develop protocols and train staff Communicate with staff your values including respect, flexibility, and high expectations Celebrate every participant victory University of California, Berkeley Study Leadership

32. University of California, Berkeley Using these methods ... Comparison of subjects retained and lost (Year 10)

33. University of California, Berkeley NGHS Follow-up Studies

34. University of California, Berkeley We streamlined the human subjects protection forms by using handwritten coversheets: Streamline the human subjects protection forms by using handwritten coversheets In order for your child to participate in the Growth and Health Study this year, you must sign the green consent form and return it to your child’s school before Thursday, October 15th.Thank you, Pat Crawford Project Director

35. University of California, Berkeley Our blooper: Streamline the human subjects protection forms by using handwritten coversheets I order for your child to participate in the Growth and Health Study this year, you must sign the green consent form and return it to your child’s school before Thursday, October 15th.Thank you, Pat Crawford Project Director

36. University of California, Berkeley Thank you Sheila Stern Sarah Krathwohl Zak Sabry NHLBI and all of the NGHS participants who have given generously of their time for almost 15 years! Visit the Center for Weight and Health at http://www.cnr.berkeley.edu/cwh/