1.  Pilot Survey: For non-radiation Risk Factors Faith Davis, Ludmilla Krestinina, Oleg Kalyov, Dale Preston, Alexander Akleyev, Timothy Johnson (JCCRER Project 1.2b)

2. Background  Radiogenic cancer risk estimates limited by lack of control for confounding factors  Dosimetry available on individuals in the Techa River Cohort.  Cancer incidence and mortality data are accumulating in this cohort.  Attempts to obtain risk factor information on the Techa River cohort initially focused on members attending the URCRM and teams visiting larger villages

3. Risk Factor Information ( 5% randomized sample of the ChOS ) Risk factors Having information, % Unhealthy habits40 Occupation57 Social condition90 Anthropometry43 Education52

4. Goals  Obtain highest yield risk factor information in a cost effective manner using state of the art survey methodology  Initial focus: smoking, alcohol and family hx of cancer  Conduct a series of studies to address specific survey research methodological issues in this cohort population  Use the results of these pilots to inform a survey protocol for the entire cohort population

5. Materials Initially Developed  Introductory letter  Second letter  Third letter  Mail survey  Telephone survey

6. Survey Development  Draft survey questions (Kalyov, Davis, Johnson) revised based on group discussion of project goals  Interviewers trained at URCRM  Survey tested in URCRM patients, interviewers debriefed and survey revised  Survey tested in one village, using cognitive interviews: interviewers debriefed and survey revised  Questionnaires formatted for self-administered and interviewer-assisted modes

7. Pilot: Sampling  300 cohort members with no RF information  100 cohort members with previous RF information  If cohort member was deceased a proxy was chosen:  Family member residing with the member  Family member residing in the same community  Family member with most recent last contact date  Family member next in age  If only one relative we contacted that person

8. Initial Protocol  Mail Survey (n=300)  Send initial letter with“return receipt”  Send second letter within a month  Send third letter within another month  Telephone calls on a similar schedule (n=100)  Introductory letter (included questionnaire)

9. Will Presenting Multiple Survey Options increase response rates? GroupNo proxy or address (n) Total Contacted (n) Percent of Total Responded Percent of Contacts Responded Mail Only 346620%30% Telephone Only* 4357 3% 5% Mail and Telephone 356529%45% Groups Randomly Sampled with No Previous Risk Factor Information

10. * GroupNo Proxy or Address (n) Total Contacted (n) Percent of total responded Percent of contacts responded Telephone* 43573%5% Mail 12%21% Total 15%26% *Not strictly interpretable

11. Revised Protocol  Development of non-monetary incentive  Send initial letter and incentive (wait 10 days)  Small flat magnet with URCRM information on it.  Reminder post-cards (wait 14 days)  Second letter (wait 14 days)  Third letter “receipt requested”

12.  I mage of magnet

13. Will the use of incentives improve response rates? Mail and telephone No proxy or address (n) Total contacted (n) Percent of total Responded Percent of contacts responded No incentive (n=100) 356529%45% With incentive 6813237%56%

14. Will new Information enhance previous Information? Mail and Telephone No Proxy or Address (n) Total Contacted (n) Percent of Total Responded Percent of Contacts Responded No Risk Factor Information 356529%45% Some Risk Factor Information 99125%27%

15. Response rates by number of contacts Revised Protocol No Proxy or Address (n) Total Contacted (n) Number Responded (n) Percent of Total Responded Percent of Contacts Responded 1 st letter 681326231%47% 2 nd letter 76126%16% 3 rd letter 5021%4% Total 7638%58%

16. Response time for mail surveys 1 week (n) 2 weeks (n) 3 weeks (n) >3 weeks (n) Total (n) 1 st letter 1318452461 2 nd letter 3342 81712 3 rd letter 25 3

17. Will new information compare with old information?  In sample of 100 members with previous risk factor information the old and new information was compared  New information was either the same as the previous information or was not in conflict with it.

18. Final Implementation Protocol  Restricted effort to mail surveys  Limited information to smoking and alcohol  Shortened protocol  Introductory Letter (wait 10 days)  Postcard follow-up (wait 14 days)  Second Letter ( 28 days)  Focus on 7000 alive and dead members with addresses and no previous information  Selected alive cohort members for first contact

19. Current Survey Work:  Step 1 (n=2000 letters)  65% personal letter (to living cohort members with correct address)  35% letters to proxy (for lost and for deceased cohort members)  Step 2 (n=2000 letters)  100% letters to proxy: (n=1100 letters with 1 survey, n=389 with 2 or > surveys) 19

20. Current Results: (n=4000 letters) 20 Response category Personal surveys Proxy surveysTotal Completed Surveys 460 (35.4%)883 (32.7%) 1343 (33.6%) Refusal 24 (1.8%) 98 (3.6%)122 (3.1%) Deceased 65 (5.0%)83 (3.1%) 148 (3.7%) Wrong address 109 (8.4%) 140 (5.2%) 249 (6.2%) No response 643 (49.4%)1495 (55.4%)2138 (53.5%) Total 1301 (100%)2699 (100%)4000 (100%)

21. Future Plans for survey work 21 Step 3: 6 months (October 2012 - March 2013)  letters to proxy (2000 surveys) Step 4: 6 months (April 2013 - September 2013)  letters to proxy (final 1000 surveys)  If first proxy does not respond (deceased, refused, wrong address) identify and mail to second proxies (~1000)

22. Summary Mail survey proved to be effective in this population: similar to surveys in US populations Pilot study work allowed for protocol refinement which reduced costs of survey work and increased probability of cooperation Analytic uses, including missing data, of new risk factor data will be challenging Subset analysis of cohort members with risk factor data should be informative.

23. Acknowledgements  Appreciate the support of the US SRG for this work  Thank the cohort members and their families for their responses.