1 / 31

The Goldilocks Quandary: How much patient contact is just right?

The Goldilocks Quandary: How much patient contact is just right?. NAACCR Annual Conference 2013 C. Janna Harrell, M.S. Senior Research Analyst Utah Cancer Registry. Too little contact. Too much contact. The Goldilocks Quandary. High. Too Little. Overview.

joshua
Download Presentation

The Goldilocks Quandary: How much patient contact is just right?

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. The Goldilocks Quandary: How much patient contact is just right? NAACCR Annual Conference 2013 C. Janna Harrell, M.S. Senior Research Analyst Utah Cancer Registry

  2. Too little contact

  3. Too much contact

  4. The Goldilocks Quandary High Too Little

  5. Overview • Cancer registry research policies • The sample • The analysis (models and methods) • The results • The grand finale- • How much contact is just right?

  6. Recruitment through US Cancer Registries • Researcher initiates contact with patient • Registry initiates contact with patient • Opt-out approach • Opt-in approach • Physician notification required Beskow, L. M., R. S. Sandler and M. Weinberger (2006). "Research recruitment through US central cancer registries: balancing privacy and scientific issues." Am J Public Health 96(11): 1920-1926.

  7. Sample • Patients contacted Jan. 2007-Oct. 2012 • 11 studies • Excludes: • Deceased patients/next-of-kin studies • “Lost” patients • Ineligible patients • 9,488 patients • 75% permission studies • 25% consent studies

  8. Analysis • Bi-variate analyses using chi-square and ANOVA (p value <0.05) • Multinomial logistic regression models • 3 models: Everyone (excluding site) & by sex (including site)

  9. Regression Models • Outcome: Response to contact effort • Categorical: yes, no, nonresponsive • Predictors:

  10. Demographics: Sex & Study Type *P value <0.0001 chi squared test Consent studies only included prostate cancers

  11. Demographics: Site • CharacteristicsResponse n (%)AllYesNoNonresponsiveTotal9488541622841788Sex* Female 5749 (61 %) 3278 (57 %) 1238 (22%) 1232 (21 %) Male 3739 (39 %) 2138 (57 %) 1046 (28 %) 555 (15 %) Site* Breast 4260 (45 %) 2515 (59 %) 810 (19 %) 935 (22 %) Prostate 2380 (25 %) 1460 (61 %) 665 (28 %) 255 (11 %) Colorectal 1531 (16 %) 736 (48 %) 507 (33 %) 288 (19 %) CLL/SLL 659 (7 %) 318 (48 %) 147 (22 %) 194 (29 %) MM 175 (2 %) 95 (54 %) 58 (33 %) 22 (13 %) Ovary /female genital 358 (4 %) 228 (64 %) 83 (23 %) 47 (13 %) Childhood cancer 125 (1 %) 64 (51 %) 14 (11 %) 47 (38 %) ICCC coded *P value <0.0001 chi squared test

  12. Demographics: Stage *P value <0.001 chi squared test SEER Summary Stage 2000

  13. Demographics: Time *P value <0.001 ANOVA S.D.- standard deviation

  14. Basic Model- both sexes *P value < 0.05

  15. Females: Site *P value < 0.05

  16. Females *P value < 0.05

  17. Males *P value < 0.05

  18. All Contact Attempts

  19. Contact Attempts by Response

  20. Contact Attempts

  21. Contact Attempts

  22. Contact Attempts

  23. Contact Attempts

  24. Conclusions • Only men get prostate cancer • After 8 contact attempts 95% of those who will respond, have responded • As age increases, refusals increase and nonresponders decrease • Younger ages were more likely to be nonresponders

  25. Limitations • Contact protocol varied by study • Consent studies lack diversity • Population lacks diversity • Geography and SES • Generalizability • Limited sites considered • Are Utahns more willing to participate? • Simmons, R.G., A.L. Yuan-Chin, et al. (2013). “Examining the challenges of family recruitment to behavioral intervention trials…” Trials 14:116

  26. Future Research & Considerations • Adjust contact effort based on target population • Additional analysis with a diverse population including additional variables • Examine relationship between registry policies, participation rates, and study’s response rate • Simmons, R.G., A.L. Yuan-Chin, et al. (2013). “Examining the challenges of family recruitment to behavioral intervention trials…” Trials 14:116

  27. Acknowledgment: The UCR Team • Co-authors: Susan VanRoosendaal, Kim Herget, Nan Stroup • UCR Operations Staff • Patient Contact Staff

  28. Acknowledgment • Research was supported by the Utah Cancer Registry, which is funded by Contract No. HHSN261201000026C from the National Cancer Institute's SEER Program with additional support from the Utah State Department of Health and the University of Utah

  29. Contact me http://UCR.utah.edu Janna Harrell, M.S. Senior Research Analyst Utah Cancer Registry 801-581-8407 Janna.Harrell@hsc.utah.edu

  30. Thank you for your time and attention. 

More Related