Background. Live donor kidney transplantation (LDKT) is underutilized by patients with end-stage kidney disease due to knowledge, communication, and logistical barriers. Material and Methods. The Talking About Live Kidney Donation Social Worker Intervention (TALK-SWI) is a previously validated intervention demonstrated to improve patients' access to and pursuit of LDKT through in-person delivery of education and social support. To help overcome logistical barriers to LDKT, we adapted TALK-SWI into a telehealth intervention employing digital (ie, tablet, smartphone) and telephone technologies. We studied the usability and acceptability of both the mobile device and telephone counseling portions of the intervention among people with kidney disease. For the digital portion, we assessed critical (ie, inability to complete a task) and non-critical (ie, ability to complete a task utilizing an alternative method) errors participants encountered when using the program and their preferences regarding digital materials. Simultaneously, we assessed participants' satisfaction with telephone-adapted counseling compared to the original, in-person counseling. Results. The 15 participants testing the digital technology made 25 critical errors and 29 non-critical errors, while they easily completed 156 tasks (out of 210). A majority of participants (73%) preferred the tablet/smart phone education application over traditional materials, and most (80%) indicated they would be more likely to utilize the mobile platform over traditional materials. Participants testing the telephone-adapted (n = 45) and in-person (n = 125) social worker counseling all reported high satisfaction with the intervention. Conclusion. We successfully adapted a validated educational and behavioral intervention to improve access to LDKT into a usable and acceptable telehealth intervention.
Care for patients transitioning from chronic kidney disease to kidney failure often falls short of meeting patients' needs. The PREPARE NOW study is a cluster randomized controlled trial studying the effectiveness of a pragmatic health system intervention, 'Patient Centered Kidney Transition Care,' a multi-component health system intervention designed to improve patients' preparation for kidney failure treatment. Patient-Centered Kidney Transition Care provides a suite of new electronic health information tools (including a disease registry and risk prediction tools) to help providers recognize patients in need of Kidney Transitions Care and focus their attention on patients' values and treatment preferences. Patient-Centered Kidney Transition Care also adds a 'Kidney Transitions Specialist' to the nephrology health care team to facilitate patients' self-management empowerment, shared-decision making, psychosocial support, care navigation, and health care team communication. The PREPARE NOW study is conducted among eight [8] outpatient nephrology clinics at Geisinger, a large integrated health system in rural Pennsylvania. Four randomly selected nephrology clinics employ the Patient Centered Kidney Transitions Care intervention while four clinics employ usual nephrology care. To assess intervention effectiveness, patient reported, biomedical, and health system outcomes are collected annually over a period of 36 months via telephone questionnaires and electronic health records. The PREPARE NOW Study may provide needed evidence on the effectiveness of patient-centered health system interventions to improve nephrology patients' experiences, capabilities, and clinical outcomes, and it will guide the implementation of similar interventions elsewhere. TRIAL REGISTRATION:NCT02722382.
Comparative effectiveness of CaP treatment options is a "highest priority" research topic according to the Institute of Medicine. From 2011-2013, we assembled a population-based prospective cohort of 1,500 patients enrolled at diagnosis and followed longitudinally for factors associated with treatment selection, quality of life, cancer control and survival. Here, we report cohort characteristics and patient-reported potential barriers to radiation therapy. Through the NC Cancer Registry's Rapid Case Ascertainment system, newly diagnosed men across NC are offered participation; 59% enrolled. After a waiting period allowing physicians to opt-out a patient from participation, baseline (pre-treatment) survey is completed at a median of 6 weeks after diagnosis. Follow-up surveys occur at 6 weeks after baseline, 3 months, 1 year, and then annually. Median age was 65. The cohort is sociodemographically diverse: 28% non-White, 33% high school education or less (27% some college, 40% college graduates), 36% household income $40K or less (26% $40-70K; 38% more than $70K). Most had comorbidities at baseline: 22% diabetes, 61% hypertension, 10% history of myocardial infarction, 39% arthritis, and 11% depression. While 98% reported discussing treatment options with a urologist, only 50% discussed with a primary care physician and 42% with a radiation oncologist. Most patients indicated the physician had the biggest impact on treatment selection (64%), with 15% reporting family/friends. Overall, 46% knew someone who had external beam radiation: 46% had a good experience, 44% mixed good/bad, and 10% bad. Further, 27% knew someone who had brachytherapy: 67% good experience, 27% mixed good/bad, and 7% bad. Patients expressed many concerns about radiation and all were "very important" factors for treatment selection (Table). Other important factors included cost (73%) and treatment duration (81%). Regarding the treatment option with fewest side effects overall, 24% said robotic prostatectomy, 18% external beam radiation, and 20% brachytherapy. In this unique and diverse population-based cohort of CaP patients, misperceptions about radiation therapy, lack of multidisciplinary consultation, travel distance, treatment duration, and cost are important barriers to the use of radiation.Digital Poster Abstract 1081; TablePotential factors influencing treatment selection% of patients reporting this factor is "very important"Perceptions about radiation treatmentsExternal beam radiationBrachytherapyImpact on ability to perform usual daily activities62%Will significantly impact ability to perform usual daily activities45%13%Recovery time after treatment57%Worried about recovery time after treatment41%15%Burden on family74%Concerned about being a burden on family64%34%Preserving quality of life85%Concerned about side effects82%46%Cure92%Will cure my prostate cancer52%32%Travel distance is prohibitive10%3%Like this treatment option41%29% Open table in a new tab
OBJECTIVE Recent attention has focused on moving women from having initial mammograms to maintaining adherence to regular mammography schedules. We examined behavioral intentions to maintain mammography adherence, which include the likelihood of performing a behavior, and implementation intentions, specific action plans to obtain mammograms. Potential predictors were Theory of Planned Behavior constructs, previous barriers, previous mammography maintenance, and age. METHODS Respondents were 2062 currently adherent women due for their next mammograms in 3-4 months according to American Cancer Society recommendations for annual screening. Statistical models were used to examine predictors of behavioral and two implementation intentions, including having thought about where women would get their next mammograms and having thought about making appointments. RESULTS With the exception of pros, cons, and subjective norms, all variables predicted behavioral intentions (p <or= 0.05). Stronger perceived control, previous mammography maintenance, and one barrier (vs. none) predicted being more likely to have thought about where to get their next mammograms. Previous maintenance and no barriers (vs. two) predicted being more likely to have thought about making appointments. CONCLUSIONS Our findings suggest that among women currently adherent to mammography, volitional factors, such as barriers, may be better predictors of implementation intentions than motivational factors, such as attitudes. Implementation variables may be useful in understanding how women move from intentions to action. Future research should examine how such factors relate to mammography maintenance behaviors and can be integrated into behavior change interventions.
Little is known about patients' preferences for discussing cancer risks and risk management with primary care physicians. We sought to determine whether patients want to discuss such topics and what factors are associated with this interest. Participants (375 patients ages 40-85, of diverse race and education level) completed a telephone survey prior to scheduled physician visits. Survey included items on perceived health, perceived cancer risk, education level, and whether participants would like to discuss with a physician their breast, ovarian or colon cancer risk, tamoxifen, cancer genetic counseling, and colon cancer screening. Greater proportions were interested in discussing risks for each cancer, compared with those who were not (P < 0.0001). More participants were interested in discussing mammograms (80%) and cancer genetic counseling (60%) than tamoxifen (49%) or colon cancer screening modalities (43-53%). For many topics, poorer perceived health was associated with greater interest in future discussion; higher education level was associated with less interest.
OBJECTIVES:Healthcare provider recommendation for mammography is one of the strongest predictors of women's mammography use, but few studies have examined the association of provider characteristics with mammography recommendations. We examined the relationship of provider gender, age, medical specialty, and duration of relationship with the patient to report mammography recommendation.METHODS:Participants were women ages 40-45 and 50-55 who were part of a larger intervention study of decision making about mammography. We examined the relationship of provider characteristics to patient-reported mammography recommendations at baseline and at 24-month follow-up.RESULTS:At baseline, 74% of women in their 40s and 79% of women in their 50s reported provider mammography recommendations within the prior 2 years. Proportions were similar at the 24-month follow-up. In multivariate logistic regression models including both patient and provider characteristics, women in their 40s who had female providers were more likely to report mammography recommendations than those with male providers at baseline (OR=1.83, p=0.01) and follow-up (OR=1.74, p=0.03). Among women in their 50s, participants whose regular providers were primary care physicians were more likely to report recommendations at baseline than those whose regular providers were obstetrician/gynecologists (OR=1.68, p=0.03).CONCLUSIONS:About one fourth of women in this study reported not having been advised by a healthcare provider to have a mammogram. All women in the study had health insurance. Among women in their 40s, for whom mammography guidelines were controversial at the time of data collection, provider gender was an important predictor of patient-reported mammography recommendation.
BACKGROUND:Most women are not getting regular mammograms, and there is confusion about several mammography-related issues, including the age at which women should begin screening. Numerous groups have called for informed decision making about mammography, but few programs have resulted. Our research is intended to fill this gap.METHODS:We conducted a randomized controlled trial, which ran from 1997 to 2000. Women aged 40 to 44 and 50 to 54, who were enrolled in Blue Cross Blue Shield of North Carolina, were randomly assigned to one of three groups: usual care (UC), tailored print (TP) materials, or TP plus tailored telephone counseling (TP+TC). We assessed the impact of tailored interventions on knowledge about breast cancer and mammography, accuracy of breast cancer risk perceptions, and use of mammography at two time points after intervention-12 and 24 months.RESULTS:At 12 and 24 months, women who received TP+TC had significantly greater knowledge and more accurate breast cancer risk perceptions. Compared to UC, they were 40% more likely to have had mammograms (odds ratio=0.9-2.1). The effect was primarily for women in their 50s. TP had significant effects for knowledge and accuracy, but women who received TP were less likely to have had mammography.CONCLUSIONS:Decision-making interventions, comprised of two tailored print interventions (booklet and newsletter), delivered a year apart, with or without two tailored telephone calls, significantly increased knowledge and accuracy of perceived breast cancer risk at 12 and 24 months post-intervention. The effect on mammography use was significant in bivariate relationships but had a much more modest impact in multivariate analyses.
Background: We assessed the short-term impact of decision-making interventions on knowledge about mammography, accuracy of women’s breast cancer risk perceptions, attitudes toward mammography, satisfaction with decisions, and mammography use since the intervention. Methods: The study was conducted among women who were members of Blue Cross Blue Shield of North Carolina and were in their 40s or 50s at the time the study began in 1997. Women were randomly assigned to usual care (UC), tailored print booklets (TP) alone, or TP plus telephone counseling (TP+TC). Results: 12-month interviews were completed by 1127 women to assess short-term intervention effects. Generally, women who received TP+TC were significantly more knowledgeable about mammography and breast cancer risk and were more accurate in their breast cancer risk perceptions than women in the TP and UC groups. They also were more likely to have had a mammogram since the baseline interview. In multivariable analyses, we found significant benefits of the combination of TP+TC compared to TP and to UC for knowledge, accuracy of risk perceptions, and mammography use. Discussion: For complex decision-making tasks, such as women’s decisions about mammography in the face of controversy, the combination of TP and TC may be more effective than TP alone, and certainly more effective than UC. It is critical that investigators determine the topics for which TP is appropriate and the situations that require additional supportive interventions.
Background: Telephone counseling and tailored print communications have emerged as promising methods for promoting mammography screening. However, there has been little research testing, within the same randomized field trial, of the efficacy of these two methods compared to a high-quality usual care system for enhancing screening. This study addressed the question: Compared to usual care, is tailored telephone counseling more effective than tailored print materials for promoting mammography screening!Design: Three-year randomized field trial.Participants: One thousand ninety-nine women aged 50 and older recruited from a health maintenance organization in North Carolina.Intervention: Women were randomized to 1 of 3 groups: (1) usual care, (2) tailored print communications, and (3) tailored telephone counseling.Main Outcome: Adherence to mammography screening based on self-reports obtained during 1995, 1996, and 1997.Results: Compared to usual care alone, telephone counseling promoted a significantly higher proportion of women having mammograms on schedule (71% vs 61%) than did tailored print (67% vs 61%) but only after the first year of intervention (during 1996). Furthermore, compared to usual care, telephone counseling was more effective than tailored print materials at promoting being on schedule with screening during 1996 and 1997 among women who were off-schedule during the previous year.Conclusions: The effects of the intervention were most pronounced after the first intervention. Compared to usual care, telephone counseling seemed particularly effective at promoting change among nonadherent women, the group for whom the intervention was developed. These results suggest that telephone counseling rather than tailored print, might be the preferred first-line intervention for getting nonadherent women on schedule for mammography screening. Many questions would have to be answered about why the tailored print intervention was not more powerful. Nevertheless, it is clear that additional interventions will be needed to maintain women's adherence to mammography.
BACKGROUND:Even organizations with differing mammography recommendations agree that regular repeat screening is required for mortality reduction. However, most studies have focused on one-time screening rather than repeat adherence. We compare trends in beliefs and health-related behaviors among women screened and adherent to the National Cancer Institute's screening mammography recommendations (on schedule), those screened at least once and nonadherent (off schedule), and those never screened.METHODS:Our data are from a baseline telephone interview conducted among 1,287 female members of Blue Cross Blue Shield of North Carolina who were aged either 40 to 44 years or 50 to 54 years.RESULTS:The 3 groups differed significantly on beliefs and health-related behaviors, with the off-schedule group almost consistently falling between the on-schedule and never screened groups. Off-schedule women were more likely than on-schedule women, but less likely than those never screened, to not have a clinical breast examination within 12 months, to be ambivalent about screening mammography, to be confused about screening guidelines, and to not be advised by a physician to get a mammogram in the past 2 years. Off-schedule women perceived their breast cancer risk as lower and were less likely to be up to date with other cancer screening tests.CONCLUSIONS:Our findings suggest that women who are off schedule are in need of mammography-promoting interventions, including recommendations from and discussion with their health care providers. Because they are more positive and knowledgeable about mammography than women who have never been screened, they may benefit from brief interventions from health care providers that highlight the importance of repeat screening.
Over the last decade, there has been significant controversy about the schedule on which women, particularly women in their 40s, should have mammograms. The purpose of the analysis reported here was to assess whether women in their 40s and 50s were confused as a result of the controversy following the January 1997 National Institutes of Health Consensus Development Conference on Breast Cancer Screening For Women Ages 40-49. We also examined if confusion was related to being off schedule for mammography. The study sample included 1287 women recruited from a random sample of 2165 Blue Cross/Blue Shield of North Carolina members. The data described in this analysis were derived from a baseline telephone interview conducted as part of a larger intervention trial. Study measures included a variety of sociodemographic, medical, belief, and behavioral variables. Overall, 28% of women were confused, and 35% were off schedule. Although a higher proportion of women in their 40s than 50s were confused, more women in their 50s were off schedule. Confusion was a significant predictor for the outcome being off schedule. Predictors of confusion included several belief variables, risk perceptions, age (40s), whether the woman had a regular physician, and whether she had enough information about mammography. Healthcare providers should ask some simple questions to determine if women are confused and then seek to meet their information needs.
Cancer of the prostate is the leading cancer among American men, yet few risk factors have been established. Hair growth and development are influenced by androgens, and it has long been suspected that prostate cancer also is responsive to these hormones. A blinded, case-control study was undertaken to determine if hair patterning is associated with risk of prostate cancer, as well as specific hormonal profiles. The study accrued 315 male subjects who were stratified with regard to age, race, and case-control status (159 prostate cancer cases/156 controls). Hair-patterning classification and serum levels of total and free testosterone (T), sex hormone binding globulin, and dihydrotestosterone (DHT) were performed. Data indicate that hair patterning did not differ between pros tate cancer cases and controls; however, significant hormonal differences were detected between the two groups. Free T was greater among cases than in controls (16.4 +/- 6.1 vs. 14.9 +/- 4.8 pg/ml, P = 0.02). Conversely, DHT-related ratios were greater among controls (P = 0.03 for DHT/T and P = 0.01 for DHT/free T). Several strong associations also were found between hormone levels and hair patterning. Men with Vertex and frontal baldness had higher levels of free T (16.5 +/- 5.5 and 16.2 +/- 8.0 pg/ml, respectively) when compared to men with either little or no hair loss (14.8 +/- 4.7 pg/ml) (P = 0.01). Data suggest that increased levels of free T may be a risk factor for prostatic carcinoma. In addition, although no differences in hair patterning were detected between cases and controls within this older population, further research (i.e., prospective trials or case-control studies among younger men) may be necessary to determine if hair patterning serves as a Viable biomarker for this disease, especially given the strong association between free T levels and baldness.
Previous research has suggested that demand for genetic testing for breast cancer susceptibility may be quite high, even among those at relatively low risk of carrying a mutation. This study examined the extent to which a group of female HMO enrollees were aware of the discovery of the BRCA1 gene and, without having received detailed information about the test, whether they would be interested in being tested to find out if they have the gene. Factors associated with awareness of and interest in testing were also examined. Four hundred seventy-three women age 50 and over, almost all of whom did not have an increased risk of breast cancer based on family history, were surveyed by telephone. Fifty-one percent of respondents had heard about the discovery of a breast cancer gene. In logistic regression analysis, women who described themselves as comfortable financially, had at least some college education, and were premenopausal were more likely to have heard of the gene discovery than women who were not comfortable financially, had no more than a high school education, and were postmenopausal. Sixty-nine percent of the respondents said that they would be interested in being tested to find out if they had a breast cancer gene. Women who were younger than 60, white, believed their family would benefit if they had a mammogram, and believed that regular mammograms give them a feeling of control over their health, were more likely to be interested in testing than those who were 60 or older, African-American or other, and did not believe that their family would benefit if they had a mammogram or that mammograms give them a feeling of control over their health. These findings have implications for education and counseling. Women who express an interest in being tested must be made fully aware of the limitations and possible consequences of testing. Special efforts may be needed to make information about testing available to women who have low levels of education.
This study examined the relationships among objective and subjective risk for breast cancer and mammography stages of change as defined by the Transtheoretical Model. Women who had higher objective risk of breast cancer, as defined by the Gail et al. algorithm (M. H. Gail et al., J. Natl. Cancer Inst., 81: 1879-1886, 1989), were more likely to perceive themselves at greater subjective risk for breast cancer. Among the components of objective risk, family history of breast cancer was the only significant predictor of subjective risk. Both objective and subjective risk individually predicted stages of change, such that higher objective and subjective risk were associated with an increased probability of being in a later stage of adopting mammography. However, when objective and subjective risk were included in a multivariate model, only subjective risk predicted stages of change. In additional multivariate analyses, subjective risk continued to predict mammography stages of change when "con" and "decisional balance" scores were included in separate models. These results suggest that future research may benefit from the explicit integration of personal risk perceptions with elements of the Transtheoretical Model to provide more powerful accounts of behavioral change processes.