Rebecca G. Simmons

Telehealth Personalized Cancer Risk Communication to Motivate Colonoscopy in Relatives of Patients With Colorectal Cancer: The Family CARE Randomized Controlled Trial

PURPOSE The rate of adherence to regular colonoscopy screening in individuals at increased familial risk of colorectal cancer (CRC) is suboptimal, especially among rural and other geographically underserved populations. Remote interventions may overcome geographic and system-level barriers. We compared the efficacy of a telehealth-based personalized risk assessment and communication intervention with a mailed educational brochure for improving colonoscopy screening among at-risk relatives of patients with CRC. METHODS Eligible individuals age 30 to 74 years who were not up-to-date with risk-appropriate screening and were not candidates for genetic testing were recruited after contacting patients with CRC or their next of kin in five states. Enrollees were randomly assigned as family units to either an active, personalized intervention that incorporated evidence-based risk communication and behavior change techniques, or a mailed educational brochure. The primary outcome was medically verified colonoscopy within 9 months of the intervention. RESULTS Of the 481 eligible and randomly assigned at-risk relatives, 79.8% completed the outcome assessments within 9 months; 35.4% of those in the personalized intervention group and 15.7% of those in the comparison group obtained a colonoscopy. In an intent-to-treat analysis, the telehealth group was almost three times as likely to get screened as the low-intensity comparison group (odds ratio, 2.83; 95% CI, 1.87 to 4.28; P < .001). Persons residing in rural areas and those with lower incomes benefitted at the same level as did urban residents. CONCLUSION Remote personalized interventions that consider family history and incorporate evidence-based risk communication and behavior change strategies may promote risk-appropriate screening in close relatives of patients with CRC.

Motivation-based intervention to promote colonoscopy screening: An integration of a fear management model and motivational interviewing

Colorectal cancer (CRC) screening rates have been low despite effectiveness of screening in reducing CRC mortality. This article outlines the theoretical background and development of an innovative, telephone-based risk communication designed to promote screening among individuals at increased risk for familial CRC. This ongoing intervention integrates the Extended Parallel Process Model of fear management and the motivational interviewing counselling style. Tailoring and implementation intentions are incorporated. The primary outcome is self-reported colonoscopy within nine months following intervention. If proven effective, the remote intervention could be broadly disseminated to individuals at increased familial CRC risk, especially those in geographically underserved areas.

Awareness and Preferences Regarding BRCA1/2 Genetic Counseling and Testing Among Latinas and Non-Latina White Women at Increased Risk for Hereditary Breast and Ovarian Cancer

This study was an investigation of awareness, cognitions, and psychosocial and educational needs related to genetic counseling and testing among Latinas and non-Latina whites at increased risk for having a BRCA1/2 mutation. Sixty-three Latina and eighty-four non-Latina white women completed telephone surveys employing a mixture of quantitative and qualitative questions assessing awareness, benefits, risks, barriers, and genetic counseling communication preferences regarding BRCA1/2 testing. Among participants who had not previously had genetic counseling/testing, 56.9% of Latinas (29/51) and 34.8% of non-Latina white participants (24/69) were unaware of the availability of BRCA1/2 testing. In multivariate logistic regression analysis, Latina ethnicity was the only statistically significant independent factor associated with lack of awareness (OR = 0.42; 95% CI = 0.19–0.35). No appreciable differences were noted between ethnic groups regarding perceived benefits of BRCA1/2 testing or desired genetic counseling topics. These findings underscore the importance of increasing awareness of cancer genetic counseling and genetic testing among both Latina and non-Latina white populations.

Examining the challenges of family recruitment to behavioral intervention trials: factors associated with participation and enrollment in a multi-state colonoscopy intervention trial

BackgroundColonoscopy is one of the most effective methods of cancer prevention and detection, particularly for individuals with familial risk. Recruitment of family members to behavioral intervention trials remains uniquely challenging, owing to the intensive process required to identify and contact them. Recruiting at-risk family members involves contacting the original cancer cases and asking them to provide information about their at-risk relatives, who must then be contacted for study enrollment. Though this recruitment strategy is common in family trials, few studies have compared influences of patient and relative participation to nonparticipation. Furthermore, although use of cancer registries to identify initial cases has increased, to our knowledge no study has examined the relationship between registries and family recruitment outcomes.MethodsThis study assessed predictors of case participation and relative enrollment in a recruitment process that utilized state cancer registries. Participation characteristics were analyzed with separate multivariable logistic regressions in three stages: (1) cancer registry-contacted colorectal cancer (CRC) cases who agreed to study contact; (2) study-contacted CRC cases who provided at-risk relative information; and (3) at-risk relatives contacted for intervention participation.ResultsCancer registry source was predictive of participation for both CRC cases and relatives, though relative associations (odds ratios) varied across registries. Cases were less likely to participate if they were Hispanic or nonwhite, and were more likely to participate if they were female or younger than 50 at cancer diagnosis. At-risk relatives were more likely to participate if they were from Utah, if another family member was also participating in the study, or if they had previously had a colonoscopy. The number of eligible cases who had to be contacted to enroll one eligible relative varied widely by registry, from 7 to 81.ConclusionsFamily recruitment utilizing cancer registry-identified cancer cases is feasible, but highly dependent on both the strategies and protocols of those who are recruiting and on participant characteristics such as sex, race, or geography. Devising comprehensive recruitment protocols that specifically target those less likely to enroll may help future research meet recruitment goals.Trial registrationFamily Colorectal Cancer Awareness and Risk Education Project NCT01274143.

Efficacy of a Telehealth Intervention on Colonoscopy Uptake When Cost Is a Barrier: The Family CARE Cluster Randomized Controlled Trial.

Background: We tested the efficacy of a remote tailored intervention Tele-Cancer Risk Assessment and Evaluation (TeleCARE) compared with a mailed educational brochure for improving colonoscopy uptake among at-risk relatives of colorectal cancer patients and examined subgroup differences based on participant reported cost barriers. Methods: Family members of colorectal cancer patients who were not up-to-date with colonoscopy were randomly assigned as family units to TeleCARE (N = 232) or an educational brochure (N = 249). At the 9-month follow-up, a cost resource letter listing resources for free or reduced-cost colonoscopy was mailed to participants who had reported cost barriers and remained nonadherent. Rates of medically verified colonoscopy at the 15-month follow-up were compared on the basis of group assignment and within group stratification by cost barriers. Results: In intent-to-treat analysis, 42.7% of participants in TeleCARE and 24.1% of participants in the educational brochure group had a medically verified colonoscopy [OR, 2.37; 95% confidence interval (CI) 1.59–3.52]. Cost was identified as a barrier in both groups (TeleCARE = 62.5%; educational brochure = 57.0%). When cost was not a barrier, the TeleCARE group was almost four times as likely as the comparison to have a colonoscopy (OR, 3.66; 95% CI, 1.85–7.24). The intervention was efficacious among those who reported cost barriers; the TeleCARE group was nearly twice as likely to have a colonoscopy (OR, 1.99; 95% CI, 1.12–3.52). Conclusions: TeleCARE increased colonoscopy regardless of cost barriers. Impact: Remote interventions may bolster screening colonoscopy regardless of cost barriers and be more efficacious when cost barriers are absent. Cancer Epidemiol Biomarkers Prev; 24(9); 1311–8. ©2015 AACR.

Contraceptive method use during the community-wide HER salt lake contraceptive initiative

Objectives To describe a community-wide contraception initiative and assess changes in method use when cost and access barriers are removed in an environment with client-centered counseling. Methods HER Salt Lake is a prospective cohort study occurring during three 6-month periods (September 2015 through March 2017) and nested in a quasiexperimental observational study. The sample was women aged 16 to 45 years receiving new contraceptive services at health centers in Salt Lake County, Utah. Following the control period, intervention 1 removed cost and ensured staffing and pharmacy stocking; intervention 2 introduced targeted electronic outreach. We used logistic regression and interrupted time series regression analyses to assess impact. Results New contraceptive services were provided to 4107 clients in the control period, 3995 in intervention 1, and 3407 in intervention 2. The odds of getting an intrauterine device or implant increased 1.6 times (95% confidence interval [CI] = 1.5, 1.6) during intervention 1 and 2.5 times (95% CI = 2.2, 2.8) during intervention 2, relative to the control period. Time series analysis demonstrated that participating health centers placed an additional 59 intrauterine devices and implants on average per month (95% CI = 13, 105) after intervention 1. Conclusions Removing client cost and increasing clinic capacity was associated with shifts in contraceptive method mix in an environment with client-centered counseling; targeted electronic outreach further augmented these results.

User profile and preferences in fertility apps for preventing pregnancy: an exploratory pilot study

Background The rapid proliferation of fertility apps has created a market that has the potential to address the needs of women and couples worldwide. Some women who seek to prevent pregnancy are making behavioral decisions based on information they receive from fertility apps, yet fertility apps may not always be accurate and reliance on them could lead to unintended pregnancies. Little research has been done to understand who uses fertility apps for pregnancy prevention, how those who use them perceive their efficacy, and their preferences for how apps should be designed and presented to accurately assist them in preventing pregnancy. Methods A web-based pilot survey was launched through Facebook recruiting women who either currently use a fertility app for pregnancy prevention or intend to use one in the future. Data collected from 1,000 women surveyed user preferences around fertility app characteristics, including aesthetics, features, functionality, and reputation. User knowledge about fertility and reproduction was assessed, and knowledge categories were created. Chi-square tests assessed differences in app characteristic preferences according to knowledge category. Additional qualitative analyses on free-text answers explored which features of apps are important to users when they search for one to use. Results Approximately one quarter (23.1%) of survey respondents reported currently using a fertility app or had used one in the recent past, and 76.9% reported intention to use one in the future. A majority of both current and intended users (65.4%) had some knowledge of fertility and reproduction, while 16.5% had very little knowledge. 18.1% reported receiving prior provider counseling on using a fertility-awareness based method. Users across all knowledge groups said it was very important for apps to be science-based and that they identify fertile days during the menstrual cycle. Conclusions Women who use or wish to use apps to prevent pregnancy are seeking apps that are scientifically sound and provide them personalized information around their potential fertility. However, most fertility apps women reported using lack the capability for true fertility-awareness based method application for accurate, reliable pregnancy prevention. More research is needed to evaluate apps for efficacy and accuracy preventing pregnancy. Collaborations between app developers and womens health experts are encouraged, as well as informed consumerism campaigns.

Market-testing a smartphone application for family planning: assessing potential of the CycleBeads app in seven countries through digital monitoring

Background The advent of new technological approaches to family planning has the potential to address unmet need in low- and middle-income countries. Provision of fertility awareness-based apps have the ability to provide accessible, direct-to-user fertility information to help women achieve their reproductive goals. The CycleBeads app, a digital platform for the Standard Days Method (SDM), a modern method of family planning, helps women achieve or prevent pregnancy, or track their cycles using the only their period start dates. Methods Brief social marketing campaigns were launched by the app developer to monitor cost and distribution of the CycleBeads app, understand the user profile, and assess user experience. Monitoring and evaluation through in-app micro surveys occurred over a 6-cycle period in seven countries: Egypt, Ghana, India, Jordan, Kenya, Nigeria, and Rwanda. In-app micro-surveys were utilized to collect data around demographics, mode of use of the app, prior experiences with family planning, and satisfaction to better understand womens interactions with the apps, and the possibility for meeting unmet need. Analyzes focused on women who were using the app to prevent pregnancy or track their cycles. Results Social media campaigns proved to be an easy, low-cost approach to advertising the CycleBeads app. As a result, 356,520 women downloaded the app, and the cost to the advertiser per download ranged from

Estimating six-cycle efficacy of the dot app for pregnancy prevention

0.17-0.69. A majority of app users were between 20-29 years old, married or in exclusive relationships. Overall, 39.9% of users were using the app to prevent pregnancy, 38.5% to plan a pregnancy, and 21.6% were tracking their cycles. Among the users preventing pregnancy, 64.1% of women had not used a family planning method 3 months before downloading the CycleBeads app. One-third of users who were using the app to track their cycles, reported that they had not been using any form of family planning. In all seven countries, nearly 60% of women reported that they would definitely recommend the CycleBeads app to a friend, indicating their satisfaction with the app. Conclusions Our main findings indicate that a social media campaign is a low-cost approach to making the CycleBeads app accessible to women. The app addresses multiple reproductive intentions and attracts a diverse demographic of users across different life stages. For many women the app was the first modern method they used in the last 3 months, showing that fertility awareness-based apps have the potential to address an unmet need. Future studies should focus on changes in behavior during the fertile window, partner communication, and future family planning intentions.

Changes in uptake and cost of long-acting reversible contraceptive devices following the introduction of a new low-cost levonorgestrel IUD in Utah's Title X clinics: A retrospective review

OBJECTIVE To assess six-cycle perfect and typical use efficacy of Dynamic Optimal Timing (Dot), an algorithm-based fertility app that identifies the fertile window of the menstrual cycle using a womans period start date and provides guidance on when to avoid unprotected sex to prevent pregnancy. STUDY DESIGN We are conducting a prospective efficacy study following a cohort of women using Dot for up to 13 cycles. Study enrollment and data collection are being conducted digitally within the app and include a daily coital diary, prospective pregnancy intentions and sociodemographic information. We used data from the first six cycles to calculate life-table failure rates. RESULTS We enrolled 718 women age 18-39 years. Of the 629 women 18-35 years old, 15 women became pregnant during the first six cycles for a typical use failure rate of 3.5% [95% CI 1.7-5.2]. All pregnancies occurred with incorrect use, so we did not calculate a perfect use failure rate. CONCLUSIONS These findings are promising and suggest that the 13-cycle results will demonstrate high efficacy of Dot. IMPLICATIONS While final 13-cycle efficacy results are forthcoming, 6-cycle results suggest that Dots guidance provides women with useful information for preventing pregnancy.