the goldilocks quandary: how much patient contact is just right? naaccr annual conference 2013 c....
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![Page 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](https://reader038.vdocument.in/reader038/viewer/2022110116/551bf2c9550346be588b66bc/html5/thumbnails/1.jpg)
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
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Too little contact
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Too much contact
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Just RightLow
The Goldilocks Quandary
Too Little
Re
spo
nse
Ra
te
Too Much
High
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Overview
• Cancer registry research policies• The sample• The analysis (models and methods)• The results• The grand finale- oHow much contact is just right?
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Recruitment through US Cancer Registries
1. Researcher initiates contact with patient
2. Registry initiates contact with patient Opt-out approach Opt-in approach
3. 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.
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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
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Code Definition Code Definition
100 Mailed 1st letter to patient 205 Spoke with- considering
101
Mailed 2nd letter to patient 206 Spoke with- willing
102
Letter returned w/forwarding addresses 207
Spoke with- Received, already sent to us
103
Letter returned, NO forwarding address 208 Spoke with- too sick
108
Mailed letter to new address as per patient 209 Spoke with- no cancer
110 Mailed additional items 214
Patient left message for Coordinator
200 Left message on machine 215 Spoke with- Refused
201 Left message with person 217 Spoke with- not received
202 No answer 300
Survey returned/ no consent form
204
Disconnected/Wrong number 302
Consent returned/no survey
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Analysis
• Bi-variate analyses using chi-square and ANOVA (p value <0.05)
• Multinomial logistic regression modelso 3 models:
Everyone (excluding site) & by sex (including site)
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Regression Models
• Outcome: Response to contact effort– Categorical: yes, no, nonresponsive
• Predictors: Sex Age at DiagnosisSite Age at ContactStage Time from diagnosis to
first contact attempt
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Demographics: Sex & Study Type
Response n (%)
All Yes No Non-responsive
Total 9488 5416 (57%) 2284 (24%) 1788 (19%)
Sex* Female 5749 (61%) 3278 (57%) 1238 (22%) 1232 (21%)
Male 3739 (39%) 2138 (57%) 1046 (28%) 555 (15%)
Study Type*
Permission 7108 (75%) 3956 (56%) 1619 (23%) 1533 (22%)
Consent 2380 (25%) 1460 (61%) 665 (28%) 255 (11%)
*P value <0.0001 chi squared test
Consent studies only included prostate cancers
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Demographics: Site
• Characteristics Response n (%) All Yes No Nonresponsive Total 9488 5416 2284 1788 Sex* 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 %)
Site*Response n (%)
All Yes No Non-responsive
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%)
*P value <0.0001 chi squared test ICCC coded
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Demographics: Stage
Stage*Response n (%)
All Yes No Non-responsive
In situ 855 (9%) 496 (58%) 169 (20%) 190 (22%)
Local 5033 (53%) 2893 (57%) 1248 (25%) 892 (18%)
Regional 2366 (25%) 1354 (57%) 576 (24%) 436 (18%)
Distant 973 (10%) 515 (53%) 243 (25%) 215 (22%)
Unstaged 261 (3%) 158 (61%) 48 (18%) 55 (21%)
*P value <0.001 chi squared test
SEER Summary Stage 2000
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Demographics: Time
Time*All Yes No Non-
responsive
Mean Range Mean (S.D.) Mean (S.D.) Mean (S.D.)
Age at Diagnosis
52 0-94 51 (11.6) 55 (12.0) 50 (12.7)
Age at Contact 61 18-10160 (10.7) 64 (10.8) 58 (11.4)
Years from Diagnosis to First Contact
8.5 0-39 8.4 (6.0) 8.4 (6.0) 9 (6.4)
*P value <0.001 ANOVA
S.D.- standard deviation
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Basic Model- both sexes
ComparisonReply
(ref=yes)Odds Ratio
(C.I.)Distant vs. Local
Stage* No 0.69 (0.56-0.83)
Male vs. Female* Non-responsive 1.24 (1.05-1.45)
Age at Diagnosis* No 1.04 (1.04-1.05)
Age at Diagnosis* Non-responsive 0.99 (0.987-0.998)
Years from Diagnosis to First Contact
Attempt*No 1.04 (1.03-1.05)
*P value < 0.05
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Females: SiteComparison
(ref=colorectal)Reply
(ref=yes)Odds Ratio
(C.I.)
Breast* No 0.62 (0.50-0.77)
Breast* Non-responsive 0.74 (0.59-0.93)
CLL/SLL* No 0.59 (0.38-0.93)
CLL/SLL* Non-responsive 2.35 (1.48-3.73)
Ovary/Genital Organ* No 0.61 (0.44-0.86)
Ovary/Genital Organ* Non-responsive 0.49 (0.33-0.73)
*P value < 0.05
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Females
ComparisonReply
(ref=yes)Odds Ratio
(C.I.)
Distant vs. Local* Non-responsive 0.67 (0.45-0.99)
Age at Diagnosis* No 1.04 (1.03-1.05)
Age at Diagnosis* Non-responsive
0.99 (0.979-0.996)
Years from Diagnosis to First Contact Attempt* No 1.01 (0.998-1.021)
*P value < 0.05
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Males
ComparisonReply
(ref=yes)Odds Ratio
(C.I.)
CLL/SLL vs. Colorectal* No 0.42 (0.22-0.81)
Age at Diagnosis* No 1.05 (1.04-1.07)
Age at Diagnosis* Nonresponsive 0.98 (0.969-0.997)
*P value < 0.05
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All Contact Attempts
1 3 5 7 9 11 13 15 17 19 210
500
1000
1500
2000
2500
Contact Attempts
Pe
op
le
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Contact Attempts by Response
0 1 2 3 4 5 6 7 8 9 1011121314151617181920210
200
400
600
800
1000
1200
1400
1600
1800YesNoNonresponsive
Contact Attempts
Pe
op
le Mean
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Contact Attempts
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 160
20
40
60
80
100
Yes NoContact Attempts
% R
es
po
nd
ing
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Contact Attempts
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 160
20
40
60
80
100
Yes NoContact Attempts
% R
es
po
nd
ing
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Contact Attempts
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 160
20
40
60
80
100
Yes NoContact Attempts
% R
es
po
nd
ing
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Contact Attempts
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 160
20
40
60
80
100
Yes NoContact Attempts
% R
es
po
nd
ing 95% responded by
8 contact attempts
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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
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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
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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
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Acknowledgment: The UCR Team
Co-authors: Susan VanRoosendaal, Kim Herget, Nan Stroup
UCR Operations Staff
Patient Contact Staff
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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
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Contact me
http://UCR.utah.edu
Janna Harrell, M.S.Senior Research Analyst
Utah Cancer Registry801-581-8407
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Thank you for your time and attention.