Population-level trends in posttreatment cancer survivors' concerns and associated receipt of care: results from the 2006 and 2010 LIVESTRONG surveys.

UNLABELLED: There is a need to better understand the posttreatment concerns of the nearly 14 million survivors of cancer alive in the United States today and their receipt of care. Using data from 2,910 posttreatment survivors of cancer from the 2006 or 2010 LIVESTRONG Surveys, the authors examined physical, emotional, and practical concerns, receipt of care, and trends in these outcomes at the population level. RESULTS: 89% of respondents reported at least one physical concern (67% received associated posttreatment care), 90% reported at least one emotional concern (47% received care), and 45% reported at least one practical concern (36% received care). Female survivors, younger survivors, those who received more intensive treatment, and survivors without health insurance often reported a higher burden of posttreatment concerns though were less likely to have received posttreatment care. These results reinforce the importance of posttreatment survivorship and underscore the need for continued progress in meeting the needs of this population. Efforts to increase the availability of survivorship care are extremely important to improve the chances of people affected by cancer living as well as possible in the posttreatment period.

Using collaborative web technology to construct the health information national trends survey.

Scientists are taking advantage of web-based technology to work in new collaborative environments, a phenomenon known as Science 2.0. The National Cancer Institute created a web-based tool called HINTS-GEM, which allows a diverse group of stakeholders to collaborate in a virtual environment by providing input on content for the Health Information National Trends Survey (HINTS). This involved stakeholders providing new suggested content and commenting and rating on existing content. HINTS is a nationally representative survey of the US noninstitutionalized adult population. This article describes the conceptual development of HINTS-GEM and provides results of its use by stakeholders in creating an improved survey instrument.

Picking up the pace: changes in method and frame for the health information national trends survey (2011-2014).

Health communication and health information technology influence the ways in which health care professionals and the public seek, use, and comprehend health information. The Health Information National Trends Survey (HINTS) program was developed to assess the effect of health communication and health information technology on health-related attitudes, knowledge, and behavior. HINTS has fielded 3 national data collections with the fourth (HINTS 4) currently underway. Throughout this time, the Journal of Health Communication has been a dedicated partner in disseminating research based on HINTS data. Thus, the authors thought it the perfect venue to provide an historical overview of the HINTS program and to introduce the most recent HINTS data collection effort. This commentary describes the rationale for and structure of HINTS 4, summarizes the methodological approach applied in Cycle 1 of HINTS 4, describes the timeline for the HINTS 4 data collection, and identifies priorities for research using HINTS 4 data.

Diagnostic breast magnetic resonance imaging and contralateral prophylactic mastectomy.

BACKGROUND: Preoperative use of breast magnetic resonance imaging (MRI) in women with breast cancer may increase rates of mastectomy. This study investigated relationships between breast MRI and therapeutic and contralateral prophylactic mastectomy (CPM) in women with breast cancer. METHODS: A total of 3606 women diagnosed with stage 0-III breast cancer from 1998 through 2000 (n = 1743; early period) or from 2003 through 2005 (n = 1863; late period) were retrospectively identified. Patient demographic and clinical characteristics were obtained from our institution's tumor registry. MRI use in the diagnostic evaluation was obtained from a prospective radiology database. Rates of therapeutic mastectomy, CPM, and associations with breast MRI were compared between the two time periods by multiple logistic regressions controlling for disease stage, age, family history, and calendar year of diagnosis. RESULTS: A total of 14.2% of women underwent MRI, 29.0% had mastectomy, and 5.3% had CPM. Use of breast MRI increased substantially between the two time periods (4.1% to 23.7%, P < 0.001). Mastectomy rates increased from 28% to 30% (P > 0.05). The rate of CPM increased by >50% from the early to late period (4.1% to 6.4%, P < 0.002). Women who underwent MRI were nearly twice as likely to have CPM (9.2 vs. 4.7%, P < 0.001). Multivariate models found MRI was associated with increased rates of CPM for women with stage I or II disease (odds ratio 2.04, P = 0.001). CONCLUSIONS: MRI changes the surgical treatment of breast cancer among subsets of women diagnosed with breast cancer, suggesting there are hidden monetary and nonmonetary costs associated with its use.

Tolerability of breast ductal lavage in women from families at high genetic risk of breast cancer.

BACKGROUND: Ductal lavage (DL) has been proposed as a minimally-invasive, well-tolerated tool for obtaining breast epithelial cells for cytological evaluation of breast cancer risk. We report DL tolerability in BRCA1/2 mutation-positive and -negative women from an IRB-approved research study. METHODS: 165 BRCA1/2 mutation-positive, 26 mutation-negative and 3 mutation unknown women underwent mammography, breast MRI and DL. Psychological well-being and perceptions of pain were obtained before and after DL, and compared with pain experienced during other screening procedures. RESULTS: The average anticipated and experienced discomfort rating for DL, 47 and 48 (0-100), were significantly higher (p < 0.01) than the anticipated and experienced discomfort of mammogram (38 and 34), MRI (36 and 25) or nipple aspiration (42 and 27). Women with greater pre-existing emotional distress experienced more DL-related discomfort than they anticipated. Women reporting DL-related pain as worse than expected were nearly three times more likely to refuse subsequent DL than those reporting it as the same or better than expected. Twenty-five percent of participants refused repeat DL at first annual follow-up. CONCLUSION: DL was anticipated to be and experienced as more uncomfortable than other procedures used in breast cancer screening. Higher underlying psychological distress was associated with decreased DL tolerability.

Predictors of perceived ambiguity about cancer prevention recommendations: sociodemographic factors and mass media exposures.

Cancer prevention recommendations reaching the public today are often ambiguous-that is, of uncertain reliability, credibility, or adequacy-yet little is known about the factors that influence public perceptions of this ambiguity. We used data from the 2005 Health Information National Trends Survey, conducted by the U.S. National Cancer Institute, to explore how sociodemographic characteristics and self-reported mass media exposures relate to perceptions of ambiguity regarding recommendations for the prevention of colon, skin, and lung cancer. Various sociodemographic characteristics (age, education, race) and mass media exposures (television, radio, Internet, health news) were found to be associated with perceived ambiguity about cancer prevention recommendations, and many of these associations varied by cancer type. These findings have important implications for future health communication research and practice.

Social media use in the United States: implications for health communication.

BACKGROUND: Given the rapid changes in the communication landscape brought about by participative Internet use and social media, it is important to develop a better understanding of these technologies and their impact on health communication. The first step in this effort is to identify the characteristics of current social media users. Up-to-date reporting of current social media use will help monitor the growth of social media and inform health promotion/communication efforts aiming to effectively utilize social media. OBJECTIVE: The purpose of the study is to identify the sociodemographic and health-related factors associated with current adult social media users in the United States. METHODS: Data came from the 2007 iteration of the Health Information National Trends Study (HINTS, N = 7674). HINTS is a nationally representative cross-sectional survey on health-related communication trends and practices. Survey respondents who reported having accessed the Internet (N = 5078) were asked whether, over the past year, they had (1) participated in an online support group, (2) written in a blog, (3) visited a social networking site. Bivariate and multivariate logistic regression analyses were conducted to identify predictors of each type of social media use. RESULTS: Approximately 69% of US adults reported having access to the Internet in 2007. Among Internet users, 5% participated in an online support group, 7% reported blogging, and 23% used a social networking site. Multivariate analysis found that younger age was the only significant predictor of blogging and social networking site participation; a statistically significant linear relationship was observed, with younger categories reporting more frequent use. Younger age, poorer subjective health, and a personal cancer experience predicted support group participation. In general, social media are penetrating the US population independent of education, race/ethnicity, or health care access. CONCLUSIONS: Recent growth of social media is not uniformly distributed across age groups; therefore, health communication programs utilizing social media must first consider the age of the targeted population to help ensure that messages reach the intended audience. While racial/ethnic and health status-related disparities exist in Internet access, among those with Internet access, these characteristics do not affect social media use. This finding suggests that the new technologies, represented by social media, may be changing the communication pattern throughout the United States.

Information processing and negative affect: evidence from the 2003 Health Information National Trends Survey.

OBJECTIVE: Health communication can help reduce the cancer burden by increasing processing of information about health interventions. Negative affect is associated with information processing and may be a barrier to successful health communication. DESIGN AND MAIN OUTCOME MEASURES: We examined associations between negative affect and information processing at the population level. Symptoms of depression (6 items) and cancer worry (1 item) operationalized negative affect; attention to health information (5 items) and cancer information-seeking experiences (6 items) operationalized information processing. RESULTS: Higher cancer worry was associated with more attention to health information (p<.01) and worse cancer information-seeking experiences (p<.05). More symptoms of depression were associated with worse information-seeking experiences (p<.01), but not with attention. CONCLUSIONS: We found population-level evidence that increased cancer worry is associated with more attention to health information, and increased cancer worry and symptoms of depression are associated with worse cancer information-seeking experiences. Results suggest that affect plays a role in health information processing, and decreasing negative affect associated with cancer communication may improve experiences seeking cancer information.

Use of the internet to communicate with health care providers in the United States: estimates from the 2003 and 2005 Health Information National Trends Surveys (HINTS).

BACKGROUND: Despite substantial evidence that the public wants access to Internet-based communication with health care providers, online patient-provider communication remains relatively uncommon, and few studies have examined sociodemographic and health-related factors associated with the use of online communication with health care providers at a population level. OBJECTIVE: The aim of the study was to use nationally representative data to report on the prevalence of and changes in use of online patient-provider communication in 2003 and 2005 and to describe sociodemographic and health-related factors associated with its use. METHODS: Data for this study are from two iterations of the Health Information National Trends Survey (HINTS 2003, HINTS 2005). In both years, respondents were asked whether they had ever used email or the Internet to communicate with a doctor or a doctor's office. Adult Internet users in 2003 (n = 3982) and 2005 (n = 3244) were included in the present study. Multivariate logistic regression analysis was conducted to identify predictors for electronic communication with health care providers. RESULTS: In 2003, 7% of Internet users had communicated online with an health care provider; this prevalence significantly increased to 10% in 2005. In multivariate analyses, Internet users with more years of education, who lived in a metro area, who reported poorer health status or who had a personal history of cancer were more likely to have used online patient-provider communication. CONCLUSIONS: Despite wide diffusion of the Internet, online patient-provider communication remains uncommon but is slowly increasing. Policy-level changes are needed to maximize the availability and effectiveness of online patient-provider communication for health care consumers and health care providers. Internet access remains a significant barrier to online patient-provider communication.

A retrospective evaluation of the Perfecting Patient Care University training program for health care organizations.

This study evaluated how the Perfecting Patient Care (PPC) University, a quality improvement (QI) training program for health care leaders and clinicians, affected the ability of organizations to improve the health care they provide. This training program teaches improvement methods based on Lean concepts and principles of the Toyota Production System and is offered in several formats. A retrospective evaluation was performed that gathered data on training, other process factors, and outcomes after staff completed the PPC training. A majority of respondents reported gaining QI competencies and cultural achievements from the training. Organizations had high average scores for the success measures of "outcomes improved" and "sustainable monitoring" but lower scores for diffusion of QI efforts. Total training dosage was significantly associated with the measures of QI success. This evaluation provides evidence that organizations gained the PPC competencies and cultural achievements and that training dosage is a driver of QI success.

Patient perceptions of electronic medical records use and ratings of care quality.

PURPOSE: Despite considerable potential for improving health care quality, adoption of new technologies, such as electronic medical records (EMRs), requires prudence, to ensure that such tools are designed, implemented, and used meaningfully to facilitate patient-centered communication and care processes, and better health outcomes. The association between patients' perceptions of health care provider use of EMRs and health care quality ratings was assessed. METHOD: Data from two iterations of the Health Information National Trends Survey, fielded in 2011 and 2012, were pooled for these analyses. The data were collected via mailed questionnaire, using a nationally representative listing of home addresses as the sampling frame (n=7,390). All data were weighted to provide representative estimates of quality of care ratings and physician use of EMR, in the adult US population. Descriptive statistics, t-tests, and multivariable linear regression analyses were conducted. RESULTS: EMR use was reported significantly more frequently by females, younger age groups, non-Hispanic whites, and those with higher education, higher incomes, health insurance, and a usual source of health care. Respondents who reported physician use of EMRs had significantly higher ratings of care quality (Beta=4.83, standard error [SE]=1.7, P<0.01), controlling for sociodemographic characteristics, usual source of health care, and health insurance status. CONCLUSION: Nationally representative data suggest that patients' perceptions of EMR use are associated with their perceptions of the quality of the health care they receive.

Perspectives of a lifelong cancer survivor--improving survivorship care.

Many of the 14 million cancer survivors in the USA live with physical, emotional and day-to-day concerns related to their cancer long after their treatment ends. Addressing the needs of the growing cancer-survivor population will be a considerable task. In this article, Ruth Rechis--a 20-year survivor of Hodgkin lymphoma--describes her personal account of surviving cancer and her experience as a researcher and advocate in the field of survivorship. Results from a national USA survey on survivorship are shared, illustrating gaps in meeting the needs of long-term survivors. A list of 'essential elements' of survivorship care is highlighted to introduce all practitioners to the components necessary for the provision of care after treatment ends. Finally, Rechis provides recommendations for engaging survivors as active participants in their post-treatment, long-term survivorship care and to ensure appropriate care is universally available as part of patient-centred comprehensive care.

Programs Addressing Psychological Health and Traumatic Brain Injury Among U.S. Military Servicemembers and Their Families.

Over the last decade, U.S. military forces have been engaged in extended conflicts that are characterized by increased operational tempo, most notably in Iraq and Afghanistan. While most military personnel cope well across the deployment cycle, many will experience difficulties handling stress at some point; will face psychological health challenges, such as post-traumatic stress disorder or major depression; or will be affected by the short- and long-term psychological and cognitive consequences of a traumatic brain injury (TBI). Over the past several years, the Department of Defense (DoD) has implemented numerous programs that address various components of psychological health along the resilience, prevention, and treatment continuum and focus on a variety of clinical and nonclinical concerns. This article provides detail from an evaluation of 211 programs currently sponsored or funded by DoD to address psychological health and TBI, along with descriptions of how programs relate to other available resources and care settings. It also provides recommendations for clarifying the role of programs, examining gaps in routine service delivery that could be filled by programs, and reducing implementation barriers. Barriers include inadequate funding and resources, concerns about the stigma associated with receiving psychological health services, and inability to have servicemembers spend adequate time in programs. The authors found that there is significant duplication of effort, both within and across branches of service. As each program develops its methods independently, it is difficult to determine which approaches work and which are ineffective. Recommendations include strategic planning, centralized coordination, and information-sharing across branches of service, combined with rigorous evaluation. Programs should be evaluated and tracked in a database, and evidence-based interventions should be used to support program efforts.

Lapse-induced surges in craving influence relapse in adult smokers: an experimental investigation.

OBJECTIVES: Nearly all smokers who lapse experience a full-blown relapse, but the mediating mechanisms that contribute to this relationship are not well understood. A better understanding of these mechanisms would help to advance more effective relapse prevention treatments for smokers. The purpose of this study is to experimentally evaluate the effects of a programmed smoking lapse on smoking relapse and the effects of postlapse changes in craving on relapse. METHOD: Adult smokers (n = 63) who quit smoking with a brief cognitive-behavioral intervention and self-help materials were randomly assigned to one of two experimental conditions after 48 h of abstinence: No lapse (a no-smoking control/30-min waiting period) or lapse (smoking two cigarettes of their favored brand during a 30-min period). All participants were then followed daily for 14 days. Craving and biochemically verified self-reported abstinence were assessed on each follow-up day. Time (days) to relapse (7 consecutive days of smoking) was the main dependent measure. RESULTS: Results of Cox regression analysis revealed that participants in the lapse condition relapsed more quickly than participants in the no-lapse condition (hazard ratio [HR] = 2.12, 95% confidence interval [CI] = [1.03, 4.35]). These effects were attributable, in part, to episodic increases in craving among participants in the lapse condition only (HR = 12.42, 95% CI = [2.00, 77.1]). CONCLUSIONS: Previously abstinent smokers who lapse are at risk for increased cigarette cravings and consequently, full-blown relapse. These results have implications for both cognitive-behavioral treatments for relapse prevention and for medications designed to help smokers manage cravings.

Sexual well-being among survivors of non-Hodgkin lymphoma.

PURPOSE/OBJECTIVES: To describe sexual well-being among non-Hodgkin lymphoma (NHL) survivors. DESIGN: Descriptive, correlational, cross-sectional study. SETTING: NHL survivors identified via the Los Angeles County Cancer Surveillance Program. SAMPLE: 222 NHL survivors two- to five-years postdiagnosis. METHODS: Data were collected via mailed questionnaire. Multivariate models were used to examine sexual well-being. MAIN RESEARCH VARIABLES: Three indices of sexual well-being were examined in relation to sociodemographic and medical variables: participation in sexual activity, satisfaction with sex life, and sexual function. FINDINGS: Most NHL survivors were participating in sexual activity; however, more than half were dissatisfied with their sex life. A substantial minority "usually or always" experienced problems with sexual function. Associations between study variables and outcomes differed across indices of sexual well-being and by gender; older age was associated with decreased participation, decreased satisfaction, and impaired sexual function for men as well as with decreased participation for women. Poorer physical functioning was associated with decreased participation for men and women as well as poorer sexual function for women. Finally, poorer mental functioning was associated with less satisfaction and poorer sexual function for men and women; shorter times since diagnosis were associated with poorer sexual function for women. CONCLUSIONS: Most NHL survivors were sexually active, but many reported difficulties with satisfaction and function. Sexual well-being is a multifaceted construct that requires continued attention throughout survivorship. IMPLICATIONS FOR NURSING: Oncology nurses are in an excellent position to ensure that survivors' sexual concerns are addressed. Survivorship care plans may help to facilitate communication about survivors' sexual well-being.

Building Bridges: Lessons from a Pittsburgh Partnership to Strengthen Systems of Care for Maternal Depression.

Between January 2007 and June 2010, members of the Allegheny County Maternal and Child Health Care Collaborative designed, implemented, and evaluated the Allegheny County Maternal Depression Initiative, a local system-change effort focused on increasing identification, referrals, and engagement in treatment as needed and appropriate for women at high risk for maternal depression. The collaborative was successful in improving key organizational and clinical processes related to the achievement of its aims. This article describes how and why the initiative was created, the processes through which it was implemented and evaluated, and the results and lessons learned. It concludes with recommendations in four areas for practice and policy change designed to expand and sustain the initiative's achievements: improve identification of maternal depression, enhance access to available resources and services, increase engagement in behavioral health treatment, and improve overall system performance.

Potential benefits of health information technology for integrating physical and behavioral health care: perinatal depression as a case-in-point.

Depression among pregnant and postpartum women (i.e., perinatal depression) is the number one complication of childbirth. The Allegheny County Maternal Depression Initiative aimed to bridge gaps between physical and behavioral health care and improve the capacity of local systems of care for identifying and treating women at high risk for perinatal depression. To achieve these goals, the collaborative adopted a community-based model of systems change focused on women enrolled in the local Medicaid managed care system. Although the systems change protocol included a number of strategies for enhancing communication at all levels of care, variations in health information technology (HIT) capacities and/or capabilities across initiative partners frequently prevented optimal implementation of these strategies. Here, we present an overview of the results of the initiative, share insights from the collaborative regarding how HIT could have improved those results, and offer recommendations related to ways to effectively leverage HIT to integrate physical and behavioral health care.

Measuring multiple dimensions of perceived control in women with newly diagnosed breast cancer.

A multidimensional approach to the study of focus of perceived control (FPC) can provide a more specific understanding of associations between FPC and adjustment to cancer. We developed and tested a measure to capture multiple dimensions of FPC and examined FPC dimensions in relation to positive expectancies and three indices of psychosocial adjustment in 219 women with breast cancer. Confirmatory factor analysis supported a 6-factor model of FPC (chi(2)(284 df) = 433.67, p < 0.001; CFI = 0.94; RMSEA = 0.049, 90% C.I. = 0.040, 0.058) that included PC over physical symptoms, emotions, relationships, medical care, cancer outcomes and life in general. Specific associations between FPC and adjustment were observed: more emotional PC was associated with less emotional distress, more physical PC was associated with better physical quality of life (QOL), and more medical PC was associated with better medical QOL. Positive expectancies were also associated with better outcomes. These results indicate dimensions of FPC as differentially associated with indices of adjustment, suggesting multiple targets of interventions aimed at benefiting breast cancer survivors.

Cultural values and secondary prevention of breast cancer in african american women.

BACKGROUND: Improving mammography initiation and maintenance among African American women has been suggested as a strategy for reducing breast cancer mortality in this population. METHODS: We examined cultural values in relation to self-reported breast cancer screening among 572 low-income, urban, African American women. Cultural values examined included time orientation, family authority, employment aspirations, value of past vs modern life, and reliance on medical professionals. Also, implications for continued development of culturally tailored health interventions and opportunities for the consideration of cultural values in health communication are discussed. RESULTS: Bivariate analyses showed that more traditional values were associated with worse screening histories and lower intentions for future screening. In multivariate analyses, two interactions were observed between cultural values and age: for younger women, more traditional values were associated with lower odds of having ever received a mammogram, and for older women, more traditional values were associated with lower odds of intentions to receive a mammogram in the next 2 years. CONCLUSIONS: This study adds to the evidence that cultural constructs, such as values, are associated with secondary prevention of breast cancer and supports the consideration of cultural constructs as important in increasing mammography and reducing breast cancer disparities for African American women.

Health-related information needs in a large and diverse sample of adult cancer survivors: implications for cancer care.

BACKGROUND: This study describes the information needs of adult cancer survivors, identifies sociodemographic, health, and healthcare-related factors associated with information needs, and examines the relationship between information needs and survivors' perceived mental and physical health. METHODS: One thousand forty survivors 2-5 years post-diagnosis who were identified via two cancer registries were included in the present analysis. Self-report questionnaires assessed six categories of information needs, sociodemographic, health, and healthcare-related variables, and perceived mental and physical health. RESULTS: Information needs were prevalent and varied; most survivors need more information about tests and treatments, health promotion, side effects and symptoms, and interpersonal and emotional issues. Multivariate analyses suggested that survivors who were younger, who reported non-White race/ethnicity, who reported less than excellent quality of follow-up cancer care, and who had more comorbid health conditions had more information needs. After adjustment for sociodemographic and health-related variables, more information needs were associated with worse perceived mental and physical health. CONCLUSIONS: Most cancer survivors needed more information about maintaining good health outcomes during survivorship. Health communication interventions, such as Survivorship Care Plans, have excellent potential to address survivors' information needs while improving quality of follow-up cancer care and health-related quality of life.