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

Just RightLow

The Goldilocks Quandary

Too Little

Re

spo

nse

Ra

te

Too Much

High

Overview

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

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.

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

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

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)

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

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

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

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

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

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

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

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

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

All Contact Attempts

1 3 5 7 9 11 13 15 17 19 210

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0 1 2 3 4 5 6 7 8 9 1011121314151617181920210

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% R

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ing 95% responded by

8 contact attempts

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

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

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

Acknowledgment: The UCR Team

Co-authors: Susan VanRoosendaal, Kim Herget, Nan Stroup

UCR Operations Staff

Patient Contact Staff

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

Contact me

http://UCR.utah.edu

Janna Harrell, M.S.Senior Research Analyst

Utah Cancer Registry801-581-8407

Janna.Harrell@hsc.utah.edu

Thank you for your time and attention.