Defining cancer survivors, their needs, and perspectives on survivorship health care in the USA.

More people are living after a diagnosis of cancer than ever before and now account for around 5% of the US population. The specialty of cancer survivorship has been developing and growing since the mid-1980s, but the term survivor is open to debate by people living with cancer and those caring for them. Regardless of the term used, many ongoing physical, psychological, and social needs affect quality of life for people who are living with cancer and those who have survived the disease. Survivors prefer to have these needs addressed by their oncologist but also want their primary care provider to have a role. However, survivors also believe there are communication and coordination barriers between care providers. The existing method for delivering cancer care is becoming unsustainable and is not adequately configured to deliver high-quality cancer care to this growing population in the USA, especially when confronted with projected health-care shortages by 2020. In this Series paper, we define the term cancer survivor, discuss survivors' ongoing needs and preferences for care over time, and consider the implications for delivering coordinated cancer care in the USA.

Have screening harms become newsworthy? News coverage of prostate and colorectal cancer screening since the 2008 USPSTF recommendation changes.

In 2008, the US Preventive Services Task Force updated its recommendations to discourage screening for prostate cancer in men over 75 and for colorectal cancer in adults over 85. We aimed to determine whether newspapers portrayed these screenings differently after these recommendation changes. A quantitative content analysis included articles on prostate-specific antigen (PSA) testing or colonoscopy in US newspapers from 2005 to 2012. Outcomes included the number of benefits and harms mentioned and the gist expert and lay readers might get from articles. Benefits in PSA articles (n = 222) and harms and benefits in colonoscopy articles (n = 65) did not change over time. Mentions of PSA harms increased after 2008 (p < .01). Expected expert gist of PSA articles became more negative after 2008 (p < .01). Expected lay gist was positive and did not change. News coverage of PSA testing harms increased without a decrease in the discussion of benefits. Consumers, especially lay consumers, are receiving unbalanced information on cancer screening.

The role of self-efficacy and motivation to explain the effect of motivational interviewing time on changes in risky sexual behavior among people living with HIV: a mediation analysis.

Little is known about the amount of Motivational Interviewing (MI) needed to reduce risky sexual behavior among People Living with HIV/AIDS (PLWHA) or the roles self-efficacy and motivation to practice safer sex play. Among 183 PLWHA who received safer sex MI and were surveyed every 4 months over a 12 month period, we used hierarchical negative binomial regression models to examine the association between amount of counseling time and sexual risk behavior. We performed mediation analysis to evaluate whether changes in self-efficacy and motivation explained this association. This study found that as MI time and number of provided sessions increased, participants' sexual risk behavior decreased. The effect of MI time and number of sessions on sexual behavior was mediated by self-efficacy but not by motivation to practice safer sex.

Serostatus disclosure to sexual partners among people living with HIV: examining the roles of partner characteristics and stigma.

HIV serostatus disclosure among people living with HIV/AIDS (PLWHA) is an important component of preventing HIV transmission to sexual partners. Due to barriers like stigma, however, many PLWHA do not disclose their serostatus to all sexual partners. This study explored differences in HIV serostatus disclosure based on sexual behavior subgroup (men who have sex with men [MSM]; heterosexual men; and women), characteristics of the sexual relationship (relationship type and HIV serostatus of partner), and perceived stigma. We examined disclosure in a sample of 341 PLWHA: 138 MSM, 87 heterosexual men, and 116 heterosexual women who were enrolled in SafeTalk, a randomized, controlled trial of a safer sex intervention. We found that, overall, 79% of participants disclosed their HIV status to all sexual partners in the past 3 months. However, we found important differences in disclosure by subgroup and relationship characteristics. Heterosexual men and women were more likely to disclose their HIV status than MSM (86%, 85%, and 69%, respectively). Additionally, disclosure was more likely among participants with only primary partners than those with only casual or both casual and primary partners (92%, 54%, and 62%, respectively). Participants with only HIV-positive partners were also more likely to disclose than those with only HIV-negative partners, unknown serostatus partners, or partners of mixed serostatus (96%, 85%, 40%, and 60%, respectively). Finally, people who perceived more HIV-related stigma were less likely to disclose their HIV serostatus to partners, regardless of subgroup or relationship characteristics. These findings suggest that interventions to help PLWHA disclose, particularly to serodiscordant casual partners, are needed and will likely benefit from inclusion of stigma reduction components.

Longitudinal effects of SafeTalk, a motivational interviewing-based program to improve safer sex practices among people living with HIV/AIDS.

Programs to help people living with HIV/AIDS practice safer sex are needed to prevent transmission of HIV and other sexually transmitted infections. We sought to assess the impact of SafeTalk, a multicomponent motivational interviewing-based safer sex program, on HIV-infected patients' risky sexual behavior. We enrolled sexually active adult HIV-infected patients from one of three clinical sites in North Carolina and randomized them to receive the 4-session SafeTalk intervention versus a hearthealthy attention-control. There was no significant difference in the proportion of people having unprotected sex between the two arms at enrollment. SafeTalk significantly reduced the number of unprotected sex acts with at-risk partners from baseline, while in controls the number of unprotected sex acts increased. Motivational interviewing can provide an effective, flexible prevention intervention for a heterogeneous group of people living with HIV.

Information processes mediate the effect of a health communication intervention on fruit and vegetable consumption.

Health communication interventions have been effective in promoting fruit and vegetable consumption (FVC). To explore mechanisms underlying health communication effectiveness, the authors investigated whether information processes mediated the relationship between health communication and FVC, using data from NC STRIDES. NC STRIDES tested the efficacy of two health communication strategies to promote FVC among a diverse population-based sample of older adults. Participants were randomized to 1 of 4 groups: control, tailored print communication (TPC), telephone motivational interviewing (TMI), or combined (TPC + TMI). To analyze data from 469 participants, the authors constructed multi-sample structural equation models. Information processes mediated the effect of TMI and TPC + TMI on FVC. TMI had an indirect effect on FVC through relevance of the communications. TPC + TMI influenced FVC through perceived relevance of the communications, trust in the communications, and dose recall via two paths. In the first path, relevance was associated with trust. Trust was associated with recall, and greater recall predicted FVC. In the second path, relevance was associated with dose recall, and more recall predicted FVC. Thus, the authors found that key information processes mediated the relationship between a health communication intervention and FVC. Further research should investigate ways to enhance relevance, trust, and recall during the delivery of interventions.

Factors associated with self-reported adherence to antiretroviral therapy in a Tanzanian setting.

This study aimed to determine the level of antiretroviral adherence and factors associated with adherence among patients receiving free antiretroviral therapy (ART) at one clinic in Tanzania. Adult patients were recruited into the cross-sectional study and completed a survey that included self-reported adherence over four days and over one month. Less than 95% adherence on either measure was considered "poor." Factors associated with adherence in unadjusted analyses (alpha = 0.10) were included in a logistic regression model. A total of 340 patients participated in the study, and 5.9% (20/340) reported poor adherence. The final model found poor adherence associated with: being young (odds ratio (OR) = 4.03) or old (OR = 6.68); having lower perceived quality of patient-provider interaction (OR = 2.75); and ever missing a clinic appointment (OR = 3.13). Results highlight good adherence, but suggest the importance of addressing: (1) age-specific challenges of adherence through counseling and support; (2) client-focused care and quality of patient-provider interaction; and (3) clinic appointment reminder systems.

Cross-cultural and international adaptation of peer support for diabetes management.

Peer support may improve self-management among the millions of people with diabetes around the world. A major challenge to international promotion of peer support is allowing for tailoring to population, cultural, health system and other features of specific settings, while also ensuring congruence with standards for what peer support entails. One strategy to address this challenge was used in the Robert Wood Johnson Foundation Diabetes Initiative. Key functions of self-management-Resources and Supports for Self-Management-were identified. Individual programmes were then encouraged to implement these resources and support in ways that were feasible in their settings and responsive to the needs and perspectives of those they serve. Extending this to peer support, three Key functions are (i) assistance in managing and living with diabetes in daily life; (ii) social and emotional support and (iii) linkage to clinical care. International promotion may be advanced by emphasizing these key functions and then encouraging local variation in the specific ways they are addressed. Similarly, evaluation of the general benefits of peer support across several individual programmes may rest on measurement of implementation of the key functions, participants' reports of receipt of them and common end points. Challenges to promoting peer support include integrating peers amidst others in the health care system, harmonizing peers with family and other social networks, maintaining the engagement of peer supporters and those they assist and preventing training, quality improvement and professionalism from distorting the fundamental benefits of support from a peer.

Outcome effectiveness of the lay health advisor model among Latinos in the United States: an examination by role.

The objective of this study was to examine lay health advisor (LHA) programs designed to promote health among US Latinos and the extent to which educator-only versus educator-plus-bridge programs differed in designs and outcomes achieved. Two independent coders reviewed 128 published articles on LHAs yielding information at two levels: (i) study design and participant and LHA characteristics from 61 studies that broadly compared educator-only versus educator-plus-bridge programs and (ii) implementation features and outcomes from 17 randomized controlled trials or quasi-experimental studies with outcome data. LHA programs have been widely used with Latinos in certain US regions; our findings indicate that LHAs are effective intervention agents. We identified differences between educator-only and educator-plus-bridge LHA programs, although the small number of educator-plus-bridge programs with outcome data limited comparisons. Major gaps remain in research targeting Latino subgroups other than Mexican immigrants/Mexican Americans. Sufficient research has evaluated LHA programs among Latinos on their ability to achieve health behavior and/or health status changes. In the future, more of a focus on organizational and policy changes is warranted. Questions remain about diversity in LHAs' characteristics and roles, which influence not only outcomes but also program sustainability and dissemination.

Perceived everyday racism, residential segregation, and HIV testing among patients at a sexually transmitted disease clinic.

OBJECTIVES: More than one quarter of HIV-infected people are undiagnosed and therefore unaware of their HIV-positive status. Blacks are disproportionately infected. Although perceived racism influences their attitudes toward HIV prevention, how racism influences their behaviors is unknown. We sought to determine whether perceiving everyday racism and racial segregation influence Black HIV testing behavior. METHODS: This was a clinic-based, multilevel study in a North Carolina city. Eligibility was limited to Blacks (N = 373) seeking sexually transmitted disease diagnosis or screening. We collected survey data, block group characteristics, and lab-confirmed HIV testing behavior. We estimated associations using logistic regression with generalized estimating equations. RESULTS: More than 90% of the sample perceived racism, which was associated with higher odds of HIV testing (odds ratio = 1.64; 95% confidence interval = 1.07, 2.52), after control for residential segregation, and other covariates. Neither patient satisfaction nor mechanisms for coping with stress explained the association. CONCLUSIONS: Perceiving everyday racism is not inherently detrimental. Perceived racism may improve odds of early detection of HIV infection in this high-risk population. How segregation influences HIV testing behavior warrants further research.

"It's all the time in my mind": facilitators of adherence to antiretroviral therapy in a Tanzanian setting.

Although HIV positive patients' adherence to antiretroviral therapy (ART) is relatively high in African nations, as compared with industrialized nations, few studies have explored why. In the research presented here we aimed to understand the dynamics of good adherence to ART among patients receiving free ART and HIV-related services from a clinic in Arusha, Tanzania. We conducted individual semi-structured interviews with 6 health care providers and 36 patients at a health care center in Arusha in 2006. Interviews were conducted in Swahili using interview guides informed by social cognitive theory. All interviews were audio-recorded, transcribed in Kiswahili, translated into English and coded for themes and patterns with ATLAS.ti. Of the 36 patients interviewed (mean time on ART 9.8 months; range 1-23 months), 32 reported perfect adherence in the previous month. Self-reported adherence was high despite economic hardship, depression, low rates of HIV disclosure and high perceived HIV-associated stigma. Five factors emerged to explain excellent adherence in the face of such barriers. First, all respondents experienced substantial improvements in their health after starting ART; this supported their confidence in the medication and motivated them to adhere. Second, their perceived need to be able to meet their family responsibilities motivated respondents to stay healthy. Third, respondents developed specific strategies to remember to take pills, particularly routinizing pill-taking by linking it with daily activities or events. Fourth, material and emotional support received from others facilitated adherence. Finally, respondents trusted the advice and instructions of their health care providers, who regularly emphasized adherence. The facilitating factors identified were consistent with the constructs of social cognitive theory and highlighted the importance of interventions that address multiple levels of influence on adherence.

Endocrine Therapy Nonadherence and Discontinuation in Black and White Women.

BACKGROUND: Differential use of endocrine therapy (ET) by race may contribute to breast cancer outcome disparities, but racial differences in ET behaviors are poorly understood. METHODS: Women aged 20-74 years with a first primary, stage I-III, hormone receptor-positive (HR+) breast cancer were included. At 2 years postdiagnosis, we assessed nonadherence, defined as not taking ET every day or missing more than two pills in the past 14 days, discontinuation, and a composite measure of underuse, defined as either missing pills or discontinuing completely. Using logistic regression, we evaluated the relationship between race and nonadherence, discontinuation, and overall underuse in unadjusted, clinically adjusted, and socioeconomically adjusted models. RESULTS: A total of 1280 women were included; 43.2% self-identified as black. Compared to white women, black women more often reported nonadherence (13.7% vs 5.2%) but not discontinuation (10.0% vs 10.7%). Black women also more often reported the following: hot flashes, night sweats, breast sensitivity, and joint pain; believing that their recurrence risk would not change if they stopped ET; forgetting to take ET; and cost-related barriers. In multivariable analysis, black race remained statistically significantly associated with nonadherence after adjusting for clinical characteristics (adjusted odds ratio = 2.72, 95% confidence interval = 1.75 to 4.24) and after adding socioeconomic to clinical characteristics (adjusted odds ratio = 2.44, 95% confidence interval = 1.50 to 3.97) but was not independently associated with discontinuation after adjustment. Low recurrence risk perception and lack of a shared decision making were strongly predictive of ET underuse across races. CONCLUSIONS: Our results highlight important racial differences in ET-adherence behaviors, perceptions of benefits/harms, and shared decision making that may be targeted with culturally tailored interventions.

Applying health education theory to patient safety programs: three case studies.

Program planning for patient safety is challenging because intervention-oriented surveillance data are not yet widely available to those working in this nascent field. Even so, health educators are uniquely positioned to contribute to patient safety intervention efforts because their theoretical training provides them with a guide for designing and implementing prevention programs. This article demonstrates the utility of applying health education concepts from three prominent patient safety campaigns, including the concepts of risk perception, community participation, and social marketing. The application of these theoretical concepts to patient safety programs suggests that health educators possess a knowledge base and skill set highly relevant to patient safety and that their perspective should be increasingly brought to bear on the design and evaluation of interventions that aim to protect patients from preventable medical error.

Women's experiences with violence: a national study.

BACKGROUND: Violence against women (VAW) is widespread and linked to negative public health and social outcomes. Research on VAW, however, has largely been limited to convenience samples and on variable definitions of violence, hindering our ability to fully characterize this important problem nationally and among subgroups of women. METHODS: Using a population-based national sample of noninstitutionalized women ages > or =18 (n = 1,800), we conducted a telephone survey on women's experiences with 6 types of violence, including being followed and repeatedly contacted, as well as physical and sexual assault by intimate partners and others. We calculated adult lifetime and prior year prevalence of violent experiences, examined bivariate differences in experiences among groups of women, and employed logistic regression to model the odds of adult lifetime and prior year victimization. RESULTS: Sixty percent of the respondents experienced at least 1 form of violence since age 18; 10% reported violence in the previous year. Adult lifetime and prior-year prevalence varied widely by types of violence, and by respondents' sociodemographic characteristics. Women under age 55, those receiving public assistance, and lesbian/bisexual women were at higher risk of experiencing violence in their adult lifetimes. Women age 18-24 had increased risks of victimization in the previous year. CONCLUSIONS: To accurately reflect the chronic nature of partner violence, point estimates should be supplemented with adult lifetime estimates of victimization, including stalking behaviors. Ensuring adequate numbers of women from diverse backgrounds and developing measures that more completely assess the patterns and consequences of women's experiences with violence are important next steps.

Care Transitions in Childhood Cancer Survivorship: Providers' Perspectives.

PURPOSE: Most adolescent and young adult (AYA)-aged childhood cancer survivors develop physical and/or psychosocial sequelae; however, many do not receive long-term follow-up (LTF) critical for screening, prevention, and treatment of late effects. To develop a health services research agenda to optimize care models, we conducted qualitative research with LTF providers examining existing models, and successes and challenges in maintaining survivors' connections to care across their transition to adulthood. METHODS: We interviewed 20 LTF experts (MDs, RNs, social workers, education specialists, psychologists) from 10 Children's Oncology Group-affiliated institutions, and analyzed data using grounded theory and content analysis techniques. RESULTS: Participants described the complexity of survivors' healthcare transitions. Survivors had pressing educational needs in multiple domains, and imparting the need for prevention was challenging. Multidisciplinary LTF teams focused on prevention and self-management. Care and decisions about transfer were individualized based on survivors' health risks, developmental issues, and family contexts. An interplay of provider and institutional factors, some of which were potentially modifiable, also influenced how transitions were managed. Interviewees rarely collaborated with community primary care providers to comanage patients. Communication systems and collective norms about sharing care limited comanagement capacity. Interviewees described staffing practices, policies, and informal initiatives they found reduced attrition. CONCLUSIONS: Results suggest that survivors will benefit from care models that better connect patients, survivorship experts, and community providers for uninterrupted LTF across transitions. We propose research priorities, framing attrition from LTF as a public health concern, transition as the central challenge in LTF, and transition readiness as a multilevel concept.

Effective interdisciplinary training: lessons from the University of North Carolina's student health action coalition.

PURPOSE: To identify essential elements of effective interdisciplinary training through an evaluation of the University of North Carolina's Student Health Action Coalition (SHAC), an interdisciplinary service learning program for health science students. METHOD: In 2004, 516 SHAC volunteers were asked to complete a 52-item, online questionnaire. Responses were tallied by volunteer role, and four of the resulting "divisions" (counseling, medical care, interpretation, and community outreach) were analyzed using qualitative and quantitative rating schemas. The four divisions were compared on volunteers' perception of two concepts: (1) the level of interdisciplinary training achieved and (2) the potential for working together, or "community capacity." RESULTS: A total of 283 students accessed the online questionnaire, and 281 provided consent and filled out some portion of the questionnaire, an overall response rate of 54%. A total of 159 of the 281 respondents (57%) reported volunteering most often for one of the four divisions of interest. The respondents in each volunteer division reported a level of interdisciplinary training similar to that division's level of community capacity. The division responsible for counseling services indicated the least interdisciplinary training, earning 4 points on an 8-point rating schema. This group also reported low levels of participation, group skills, information sharing, shared values, sense of community, and social networks. The community outreach division reported the highest level of interdisciplinary training, receiving 8 out of 8 points. They also had high levels of participation, group skills, information sharing, networking, and sense of community. CONCLUSIONS: Effective interdisciplinary training goes hand in hand with five elements identified from the community capacity literature: participation, training in group skills, information sharing, networking, and critical reflection. Program planners and evaluators should pay particular attention to the social environment so as not to reinforce professional stereotypes that interdisciplinary programs are meant to dispel.

Motivational interviewing to support antiretroviral therapy adherence: the role of quality counseling.

OBJECTIVE: Although research linking motivational interviewing (MI) to behavior change exists, few studies report on MI's quality or explore how it may influence effectiveness. We studied MI quality and adherence to antiretroviral therapy (ART) in the context of a randomized, controlled trial. METHODS: We used a structured instrument to code MI sessions and then correlated ART adherence (measured by electronic bottle cap monitor and pill count data at study exit) with specific counseling behaviors and the proportion of interactions that achieved quality benchmarks. RESULTS: The sample (n = 47) was predominantly male (79%), minority (90%), had a mean age of 40, and averaged 79% adherence at exit. On three of five benchmarks, most MI sessions achieved the targeted quality level: 100% achieved them for MI-consistent statements; 85% for complex reflections; 63% for reflections to questions ratio; 44% for global therapist rating; 19% for using open-ended questions. ART adherence was positively associated with the ratio of reflections to questions (r = .39, p = .02), affirming statements (r = .38, p = .02), and negatively associated with closed-ended questions (r = -.33, p = .04). DISCUSSION: Good quality MI can be conducted within the structure of a controlled trial but was generally not associated with ART adherence. CONCLUSION: Documenting treatment fidelity is critical to judging the efficacy of MI-based interventions. PRACTICE IMPLICATIONS: Regular feedback and close monitoring are needed to maintain MI quality.

Oncology providers' perspectives on endocrine therapy prescribing and management.

PURPOSE: Adjuvant endocrine therapy (ET) can reduce the risk of recurrence among females with hormone receptor-positive breast cancer. Overall, initiation and adherence to ET are suboptimal, though reasons are not well described. The study's objective was to better understand ET decision making, prescribing, and patient management from oncology providers' perspectives. METHODS: Using purposive sampling, we recruited oncology providers who saw five or more breast cancer patients per week (n=20). We conducted 30-45-minute telephone interviews, using a semistructured guide to elicit perspectives on ET use. We used thematic content analysis to systematically identify categories of meaning and double-coded transcripts using Atlas.ti. RESULTS: Providers recommend ET to all eligible patients except those with contraindications or other risk factors. Providers base their ET prescribing decisions on the patient's menopausal status, side effects, and comorbidities. ET is typically discussed multiple times: at the onset of breast cancer treatment and in more detail after other treatment completion. Providers felt that the associated recurrence risk reduction is the most compelling argument for patients during ET decision making. While providers rarely perceived noninitiation as a problem, nonadherence was prevalent, often due to unresolvable side effects. CONCLUSION: From the clinicians' perspectives, side effects from ET are the dominant factor in nonadherence. Efforts to improve adherence should focus on strategies to minimize side effects and ensure clinicians and patients are well informed regarding optimal side effect management. This finding has important implications for novel endocrine regimens that offer improved outcomes through longer duration or more intensive therapy.

Taking the transtheoretical model into the field: a curriculum for lay health advisors.

The transtheoretical model (TTM) is a commonly applied theoretical perspective for understanding mammography behaviors and improving the effectiveness of one-on-one counseling. The North Carolina Breast Cancer Screening Program (NC-BCSP) developed a training curriculum to incorporate TTM into the advising practices of lay health advisors (LHAs). The TTM helped "natural helper" LHAs understand that women in their rural North Carolina communities were likely to be in different stages for mammography screening and hence required different messages. NC-BCSP staff believed that by combining an understanding of TTM with LHAs' natural helping abilities we potentially increased the effectiveness of LHA advising. Our limited evaluation, based on LHA feedback, suggests the curriculum is a useful training tool, even for those unfamiliar with behavior change models. Our TTM curriculum serves as an example of a health behavior theory successfully operationalized outside academia for use in the field by lay people.