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Investigators conducting human subject research have typically conveyed only clinically actionable results back to individual participants. Shifting scientific culture around viewing participants as partners in research, however, is prompting investigators to consider returning as much data or results as the participant would like, even if they are not clearly actionable. Expanding return of individual results may add value for individual participants and their communities, refine future research questions and methods, build trust, and enhance retention of participants. Yet, gaps remain in understanding the implications of these changes for groups of 'vulnerable' participants, including pregnant and pediatric participants. We present the findings of a National Institutes of Health workshop on returning individual research results, particularly as applicable to pregnant and pediatric participants. Research participants who were panelists at the workshop agreed that they desire to receive their results. Workshop findings and current literature indicate that participants have differing preferences for what results they receive. One way to address the limits of current practice is to develop flexible digital platforms that convey individual results along with researchers' availability to answer questions, and to provide as much information as possible about actionable steps to control environmental exposures associated with disease risk., (Published by Oxford University Press on behalf of the Johns Hopkins Bloomberg School of Public Health 2024.)

Purpose: The role of multidisciplinary care (MDC) on cancer care processes is not fully understood. We investigated the impact of MDC on the processes of care at cancer centers within the National Cancer Institute Community Cancer Centers Program (NCCCP)., Methods: The study used data from patients diagnosed with stage IIB to III rectal cancer, stage III colon cancer, and stage III non–small-cell lung cancer at 14 NCCCP cancer centers from 2007 to 2012. We used an MDC development assessment tool—with levels ranging from evolving MDC (low) to achieving excellence (high)—to measure the level of MDC implementation in seven MDC areas, such as case planning and physician engagement. Descriptive statistics and cluster-adjusted regression models quantified the association between MDC implementation and processes of care, including time from diagnosis to treatment receipt., Results: A total of 1,079 patients were examined. Compared with patients with colon cancer treated at cancer centers reporting low MDC scores, time to treatment receipt was shorter for patients with colon cancer treated at cancer centers reporting high or moderate MDC scores for physician engagement (hazard ratio [HR] for high physician engagement, 2.66; 95% CI, 1.70 to 4.17; HR for moderate physician engagement, 1.50; 95% CI, 1.19 to 1.89) and longer for patients with colon cancer treated at cancer centers reporting high 2MDC scores for case planning (HR, 0.65; 95% CI, 0.49 to 0.85). Results for patients with rectal cancer were qualitatively similar, and there was no statistically significant difference among patients with lung cancer., Conclusion: MDC implementation level was associated with processes of care, and direction of association varied across MDC assessment areas., (Copyright © 2015 by American Society of Clinical Oncology.)

Purpose: The National Cancer Institute Community Cancer Centers Program (NCCCP) began in 2007 with a goal of expanding cancer research and delivering quality care in communities. The NCCCP Quality of Care (QoC) Subcommittee was charged with developing and improving the quality of multidisciplinary care. An assessment tool with nine key elements relevant to MDC structure and operations was developed., Methods: Fourteen NCCCP sites reported multidisciplinary care assessments for lung, breast, and colorectal cancer in June 2010, June 2011, and June 2012 using an online reporting tool. Each site evaluated their level of maturity (level 1 = no multidisciplinary care, level 5 = highly integrated multidisciplinary care) in nine elements integral to multidisciplinary care. Thematic analysis of open-ended qualitative responses was also conducted., Results: The proportion of sites that reported level 3 or greater on the assessment tool was tabulated at each time point. For all tumor types, sites that reached this level increased in six elements: case planning, clinical trials, integration of care coordination, physician engagement, quality improvement, and treatment team integration. Factors that enabled improvement included increasing organizational support, ensuring appropriate physician participation, increasing patient navigation, increasing participation in national quality initiatives, targeting genetics referrals, engaging primary care providers, and integrating clinical trial staff., Conclusions: Maturation of multidisciplinary care reflected focused work of the NCCCP QoC Subcommittee. Working group efforts in patient navigation, genetics, and physician conditions of participation were evident in improved multidisciplinary care performance for three common malignancies. This work provides a blueprint for health systems that wish to incorporate prospective multidisciplinary care into their cancer programs., (Copyright © 2015 by American Society of Clinical Oncology.)

Purpose: Patients with cancer treated at community hospitals may experience decreased quality of care compared with patients treated at higher-volume cancer hospitals. The National Cancer Institute Community Cancer Centers Program (NCCCP) pilot is designed to enhance research and improve cancer care at community hospitals. We assessed changes in quality of care among the 16 initial NCCCP sites versus 25 similar hospitals that did not participate in the NCCCP., Methods: We compared changes in concordance with five National Quality Forum-approved quality of care measures (three for breast cancer, two for colon cancer) for patients diagnosed from 2006 to 2007 (pre-NCCCP initiation) versus 2008 to 2010 (post-NCCCP initiation) at NCCCP and comparison-group hospitals. Data were collected using the Commission on Cancer Rapid Quality Reporting System. Analyses were performed using multivariate logistic regression., Results: Analyses included 18,608 patients with breast cancer and 7,031 patients with colon cancer. After NCCCP initiation, patient-level concordance rates for all five quality-of-care measures increased significantly among NCCCP and comparison-group hospitals. Increased quality of care among NCCCP sites was significantly greater than that among comparison-group hospitals for radiation therapy after breast-conserving surgery and hormonal therapy for women with hormone receptor-positive breast cancer. In multivariate regressions, increases in hormonal therapy among NCCCP-site patients were significantly greater than those among comparison-group hospitals., Conclusion: Both NCCCP and comparison-group hospitals showed improved quality of care; however, NCCCP sites had significantly greater improvements for a subset of measures. This greater increase may reflect the multidisciplinary focus of the NCCCP. Because many individuals receive cancer treatment at community hospitals, facilitating high-quality care in these environments must be a priority.

Quality cancer treatment depends upon careful coordination between multiple treatments and treatment providers, the exchange of technical information, and regular communication between all providers and physician disciplines involved in treatment. This article will examine a particular type of organizational structure purported to regularize and streamline the communication between multiple specialists and support services involved in cancer treatment: the multidisciplinary treatment care (MDC) team. We present a targeted review of what is known about various types of MDC team structures and their impact on the quality of treatment care, and we outline a conceptual model of the connections between team context, structure, process, and performance and their subsequent effects on cancer treatment care processes and patient outcomes. Finally, we will discuss future research directions to understand how MDC teams improve patient outcomes and how characteristics of team structure, culture, leadership, and context (organizational setting and local environment) contribute to optimal multidisciplinary cancer care.

Breast cancer affects thousands each year in the United States, and disproportionately affects certain subgroups. For example, the incidence of breast cancer in South Carolina is lower in African American compared with European American women by approximately 12% to 15%, but their mortality rate is twice as high as in European American women. The purpose of the study was to assess factors associated with breast cancer mortality between African American and European American women. Participants (n=314) in South Carolina's Breast and Cervical Cancer Early Detection Program (SCBCCEDP), which provides breast cancer screening and treatment services, during the years 1996-2004 were included in the study. Data, including tumor characteristics, delay intervals, and race, were examined using the chi(2) test and the Wilcoxon rank-sum test. Cox regression modeling was used to assess the relationship between delay intervals and other factors. No racial differences were found in age at diagnosis, tumor characteristics, or delay intervals. Time delay intervals did not explain differences and mortality rates by race. Survival, however, was affected by prognostic factors as well as by a significant interaction between hormone-receptor status and race. Despite the excellent record of the SCBCCEDP in screening and diagnostic or treatment referrals, the racial disparities in breast cancer mortality continue to exist in South Carolina. These findings highlight the need for future research into the etiology of racial differences, and their impact on breast cancer survival.

Objective: To address socio-demographic factors associated with adherence to follow-up recommendations in a high-risk population of women referred for follow-up care after an abnormal Pap test., Methods: 486 women aged 46-64 served by BCCEDP in two southeastern states between 1999-2002 and referred for follow-up care after an abnormal Pap test were the sampling frame for this cross-sectional study; 204 women completed a phone-based interview in 2004. Cox proportional hazards modeling was used to determine the association of various risk factors with time to adherence., Results: Among those completing the phone interview (interview rate=61.4%) the mean age was 53.3 years, 64.7% were African-American women, 81.9% had low-grade cervical lesions, and all were either uninsured or under insured. Over 95% received follow-up care for an abnormal Pap test within 365 days of referral. When the BCCEDP criteria of follow-up within 60 days were applied, 52.9% were adherent. Rates of self-reported and program documented adherence differed significantly by state. After adjusting for state of residence, women who reported having symptoms of a chronic disease were more likely to be adherent within 365 days (aHR=1.42; 95% CI=1.00, 2.04). Neither age, race, lesion severity, education, number of dependent adults or children, self-perceived physical health, nor smoking status was associated with time to adherence., Conclusions: Findings suggest that institutional factors may be more important than individual factors in predicting time to adherence for an abnormal Pap test.

Objective: Approximately 4000 women annually will die from preventable and treatable cervical cancer. Failure to adhere to follow-up recommendations after an abnormal Pap test can lead to development of cervical cancer. This paper summarizes the body of literature on adherence to follow-up after an abnormal Pap test in order to facilitate development of interventions to decrease morbidity and mortality due to cervical cancer., Methods: We conducted a comprehensive search of published literature addressing risk factors for adherence or interventions to improve adherence following an abnormal Pap test as the outcome. We included peer-reviewed original research conducted in the United States from 1990 to 2005., Results: Fourteen analytical and twelve experimental studies that met our criteria were reviewed. Lesion severity and health beliefs were consistently associated with adherence rates. Communication interventions, including telephone reminders, counseling, and educational sessions, increased follow-up compliance across intervention studies. Inconsistent evidence for associations among race, income, and age were found., Conclusions: Further research is needed to reinforce current studies addressing health beliefs and social support. Interventions that focus on the interplay among psychological, educational, and communication barriers are necessary. These interventions should be adapted and applied across various racial/ethnic and socioeconomic groups to reach all women with a high-risk profile for invasive cervical cancer.

Background: Evidence indicates that although first-degree relatives of breast cancer cases are at increased risk of developing the disease themselves, they may be underutilizing screening mammography. Therefore, interventions to increase the use of mammography in this group are urgently needed., Methods: A randomized two-group design was used to evaluate an intervention to increase mammography use among women (N = 901) with at least one first-degree relative with breast cancer. A statewide cancer registry was used to obtain a random sample of breast cancer cases who identified eligible relatives. The mailed intervention consisted of personalized risk notification and other theoretically driven materials tailored for high-risk women., Results: An overall significant intervention effect was observed (8% intervention group advantage) in mammography at post-test. There was an interaction of the intervention with age such that there was no effect among women <50 years of age and a fairly large (20% advantage) effect among women 50+ and 65+. Health insurance, education, and having had a mammogram in the year before baseline assessment were positive predictors of mammography at post-test. Perceived risk, calculated risk, and relationship to index cancer case were not associated with mammography receipt., Conclusion: The intervention was successful in increasing mammography rates among high-risk women 50+ years of age. Further work is needed to determine why it was ineffective among younger women., (Copyright 1999 American Health Foundation and Academic Press.)

METHODS. A randomized pretest post-test control group design was used to evaluate the effectiveness of a mail-out intervention for increasing screening mammography rates. A random sample of 802 women, 40+, residing in Los Angeles County, was surveyed by telephone at baseline and again 12 months after the intervention. RESULTS. Fifty percent of the intervention group and 56% of the control group had obtained a screening mammogram during the follow-up period. This difference was not statistically significant, indicating that the low-cost intervention was not successful in influencing screening mammography rates in this sample. In the combined intervention and control group, a stepwise logistic regression analysis revealed four baseline variables to be significant prospective predictors of mammography behavior during the follow-up period: Women who were adherent to the age-specific screening guidelines at baseline and women who had health insurance were more likely to obtain a mammogram during the follow-up, as were older women. Also, women who were greatly concerned about radiation exposure during a mammogram were about two and a half times less likely to obtain a mammogram during the follow-up than women who were less concerned. Self-reported reasons for adherence and nonadherence to screening guidelines are also described.

In 1987, the Division of Cancer Prevention and Control, National Cancer Institute (NCI), funded a randomized trial of a proactive counseling protocol to promote screening mammography among age-eligible female callers to the Cancer Information Service (CIS). This protocol included interactive counseling by CIS counselors to help callers overcome barriers to screening mammography; this counseling was an extension of usual service and was combined with a 2-week follow-up mailout to reinforce the brief (6-minute) proactive telephone-counseling protocol. The screening-mammography counseling intervention was tested in two regional CIS offices using a randomized two-group design. Callers were randomly assigned to the intervention or control group based on the week of their call to the CIS (n = 1831 eligible female callers). Self-reported adherence to NCI screening-mammography guidelines was assessed from telephone interviews conducted at 12 months' follow-up (87% response rate). Among all CIS callers enrolled in this study, self-reported adherence to screening-mammography guidelines at 12 months' follow-up was 63.5%. The most frequently cited barriers to screening mammography reported by CIS callers were inconvenience/being too busy (52%), cost (36%), lack of physician referral (34%), no symptoms (34%), and fear of radiation (29%). A significant intervention effect on adherence behavior was found but only in one of the two test sites and only among CIS callers reporting total family income of $30,000 or more (odds ratio = 1.38, P = .04). The vast majority (90%) of CIS callers (both intervention and control subjects) endorsed the concept of proactive counseling by the CIS. The implications of these findings for the CIS and future research are discussed.