Prevalence of perceived cognitive dysfunction in survivors of a wide range of cancers: results from the 2010 LIVESTRONG survey.

PURPOSE: With cancer survivors now numbering over 13 million in the United States, and expected to continue to increase, it is important to consider the needs of this growing population. In the literature, one of the most common complaints by cancer survivors is perceived cognitive dysfunction. Since the preponderance of the research has focused on breast cancer survivors, the purpose of the present study was to explore the prevalence and correlates of perceived cognitive dysfunction in a large sample of cancer survivors with representation across a wide range of different types of cancer. METHODS: A sample of 3108 post-treatment cancer survivors completed the 2010 LIVESTRONG survey as part of a larger study of cancer survivorship. Respondents completed standardized questions regarding current and past perceived cognitive dysfunction, as well as depressive symptoms, and demographic and medical variables. RESULTS: Current perceived cognitive dysfunction was reported by nearly half of respondents (45.7%), across a wide range of cancer types, with the highest prevalence among survivors of central nervous system cancers. Receiving chemotherapy and current report of depressive symptoms were both strongly associated with current perceived cognitive dysfunction. CONCLUSION: These findings contribute to a growing appreciation of the high prevalence of perceived cognitive dysfunction in survivors of a wide range of cancer types and the potential interactive effect of concurrent symptoms of depression. These findings highlight a need to develop more effective means of preventing or reducing cognitive dysfunction in cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: Perceived cognitive dysfunction was reported in a wide range of cancer survivors. The potential interactive effect of symptoms of depression suggests the need to develop interventions targeting both cognitive dysfunction and depression to achieve improvements in cognitive functioning.

Existential challenges experienced by lymphoma survivors: Results from the 2010 LIVESTRONG Survey.

We sought to examine the existential challenges that cancer survivors may experience as they strive to make meaning, regain their self-identity, cope with fear of recurrence, and experience feelings of grief and guilt. Lymphoma survivors (n = 429) completed the 2010 LIVE STRONG: survey and provided responses about meaning, cancer worry, security, identity, grief, guilt, and perceived functional impairment due to these concerns. Most survivors (73%-86%) endorsed existential concerns, with 30-39 percent reporting related perceived functional impairment. Concerns were associated with being female, younger, unmarried, and having undergone stem cell transplantation. Lymphoma survivors experience existential challenges that impact their life even years after diagnosis.

Cancer Survivors' Use of Fertility Preservation.

BACKGROUND: Some cancer diagnoses and treatments can place patients at risk for infertility. The American Society of Clinical Oncology recommends that health care providers address the possibility of infertility with cancer patients who are treated during their reproductive years; however, research suggests that many providers do not disclose the risk of infertility to their patients. This study examines adolescent/young adult (AYA) cancer survivors' use of and costs for fertility preservation (FP) over time. METHODS: The study included 550 AYA cancer survivors diagnosed at the ages of 15 and 39 years between 2006 and 2012. Logistic regression analyses and chi-squared tests were conducted to identify factors associated with FP use, barriers, and expenses. RESULTS: One hundred eighty two (33%) of the AYA survivors took steps to preserve their fertility. Men, survivors who did not have children, those who received chemotherapy, and those who lived in the Northeast (vs. the South) were more likely to have FP. The majority of men using FP used sperm banking (99%), whereas women used egg preservation (40%), embryo preservation (40%), and other methods (37%). On average, women paid more for FP than men (p < 0.001); however, costs for women significantly declined over time (p = 0.021). CONCLUSIONS: The study points to other areas for research in women's health, including the development of educational interventions with patients and providers to reduce gender disparities in FP and ensure timely patient-provider discussions related to fertility issues.

Outcomes and satisfaction after delivery of a breast cancer survivorship care plan: results of a multicenter trial.

PURPOSE: Survivorship care plans (SCPs) have been suggested to reduce fragmentation of care experienced by cancer survivors. Acceptance of SCPs is high, but trials in the United States are few. This pilot study used a quasiexperimental design to examine the outcomes achieved by breast cancer survivors receiving a standardized SCP visit at one of seven comprehensive cancer centers. MATERIALS AND METHODS: Outcomes were assessed before and again 3 months after delivery of an SCP and included survivors' use of and satisfaction with SCPs, perceived knowledge about survivorship, and assessment of the quality and coordination of survivorship care. RESULTS: One hundred thirty-nine survivors of breast cancer completed baseline and follow-up measures and received a standardized SCP visit. Participants most commonly used SCP materials to make decisions about exercise (64%), which tests to receive and when (62%), and dietary changes (62%). Only 21% shared the SCP with their primary care provider during that time. Satisfaction with the SCP was high, with 90% of participants reporting being at least satisfied with the SCP. Perceived knowledge about survivorship improved after SCP delivery, as did perceived care coordination and the provider's knowledge of the effects of cancer on survivors (all P < .001). Individuals closer to the time of diagnosis reported greater satisfaction with and use of SCPs. CONCLUSION: This study demonstrates improvements in perceived knowledge and quality of survivorship care after receipt of a comprehensive SCP. Survivors were satisfied with their SCP, and those closer to diagnosis reported greater satisfaction with and use of the materials.

If you did not document it, it did not happen: rates of documentation of discussion of infertility risk in adolescent and young adult oncology patients' medical records.

PURPOSE: The adolescent and young adult (AYA) population is underserved because of unique late-effect issues, particularly future fertility. This study sought to establish rates of documentation of discussion of risk of infertility, fertility preservation (FP) options, and referrals to fertility specialists in AYA patients' medical records at four cancer centers. METHODS: All centers reviewed randomized records within the top four AYA disease sites (breast, leukemia/lymphoma, sarcoma, and testicular). Eligible records included those of patients: diagnosed in 2011, with no prior receipt of gonadotoxic therapy; age 18 to 45 years; with no multiple primary cancers; and for whom record was not second opinion. Quality Oncology Practice Initiative methods were used to evaluate documentation of discussion of risk of infertility, discussion of FP options, and referral to a fertility specialist. RESULTS: Of 231 records, 26% documented infertility risk discussion, 24% documented FP option discussion, and 13% documented referral to a fertility specialist. Records were less likely to contain evidence of infertility risk and FP option discussions for female patients (P = .030 and .004, respectively) and those with breast cancer (P = .021 and < .001, respectively). Records for Hispanic/Latino patients were less likely to contain evidence of infertility risk discussion (P = .037). Records were less likely to document infertility risk discussion, FP option discussion, and fertility specialist referral for patients age ≥ 40 years (P < .001, < .001, and .002, respectively) and those who already had children (all P < .001). CONCLUSION: The overall rate of documentation of discussion of FP is low, and results show disparities among specific groups. Although greater numbers of discussions may be occurring, there is a need to create interventions to improve documentation.

A randomized controlled trial of two interventions to increase colorectal cancer screening among Hispanics on the Texas-Mexico border.

BACKGROUND: Colorectal cancer (CRC) is the second and third leading cause of cancer death for Hispanic men and women, respectively. CRC can be prevented if precursors are detected early and removed and can be successfully treated if discovered early. While one-on-one interventions for increasing CRC screening (CRCS) are recommended, few studies specifically assess the effectiveness of lay health worker (LHW) approaches using different educational materials. PURPOSE: To develop and evaluate the effectiveness of two LHW-delivered CRCS interventions known as Vale la Pena (VLP; "It's Worth It!") on increasing CRCS among Hispanics. DESIGN: The study design was a cluster randomized controlled trial with two treatment arms. SETTING/PARTICIPANTS: Six hundred and sixty five Hispanics 50 years and older were recruited from 24 colonias (neighborhoods) in the Lower Rio Grande Valley of the Texas-Mexico border. INTERVENTION: The interventions were a small media print intervention (SMPI) (including DVD and flipchart), and a tailored interactive multimedia intervention (TIMI) delivered on tablet computers. A no intervention group served as the comparison group. Data were collected between 2007 and 2009 and analyzed between 2009 and 2013. MAIN OUTCOME MEASURES: Measures assessed CRCS behavior, self-efficacy, knowledge, and other psychosocial constructs related to CRCS and targeted through VLP. RESULTS: Among participants reached for follow-up, 18.9 % in the SMPI group, 13.3 % in the TIMI group, and 11.9 % in the comparison group completed CRCS. Intent-to-treat analysis showed that 13.6 % in the SMPI group, 10.2 % in the TIMI group, and 10.8 % in the comparison group completed CRCS. These differences were not statistically significant. CONCLUSION: Results indicated that there are no significant differences in CRCS uptake between groups.

Correlates of positive health behaviors in cancer survivors: results from the 2010 LIVESTRONG survey.

Positive health-promoting behaviors, including lifestyle factors (e.g., physical activity) and appropriate health service utilization (e.g., screening for secondary cancers), can minimize the health risks and challenges facing cancer survivors. The goal of this article is to examine factors associated with positive health behaviors in 2,615 posttreatment cancer survivors who completed the 2010 LIVESTRONG survey. Multivariate logistic regression was used to model odds of reporting each of six positive health behaviors "as a result of your experience with cancer": three "healthy lifestyle" behaviors and three "health care utilization" behaviors. In fully adjusted models, factors associated with greater likelihood of engaging in positive lifestyle behaviors (e.g., physical activity, changing diet) included sociodemographic factors, greater knowledge about how to reduce cancer risk; and reporting more psychological benefits due to cancer (ps <.01). Factors associated with greater likelihood of attending medical appointments and obtaining recommended cancer screenings included older age, better patient-provider communication, greater knowledge about how to reduce cancer risk, and more psychological benefits of cancer (ps <.01). Results suggest that knowledge about how to prevent cancer and benefit finding after cancer are related to positive health behaviors broadly, whereas better patient-provider communication is associated with positive cancer screening and health care utilization but not healthy lifestyle behaviors. Clinical interventions targeting these modifiable factors could maximize positive health behavior changes among cancer survivors, affecting risk for cancer recurrence as well as overall health and well-being.

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.

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.

Identifying the core elements of effective community health worker programs: a research agenda.

Community health workers (CHWs) are increasingly being incorporated into health programs because they are assumed to effectively deliver health messages in a culturally relevant manner to disenfranchised communities. Nevertheless, the role of CHWs-who they are, what they do, and how they do it-is tremendously varied. This variability presents a number of challenges for conducting research to determine the effectiveness of CHW programs, and translating research into practice. We discuss some of these challenges and provide examples from our experience working with CHWs. We call for future research to identify the "core elements" of effective CHW programs that improve the health and well-being of disenfranchised communities.

When promotoras and technology meet: a qualitative analysis of promotoras' use of small media to increase cancer screening among South Texas Latinos.

Computer-based multimedia technologies can be used to tailor health messages, but promotoras (Spanish-speaking community health workers) rarely use these tools. Promotoras delivered health messages about colorectal cancer screening to medically underserved Latinos in South Texas using two small media formats: a "low-tech" format (flipchart and video) and a "high-tech" format consisting of a tailored, interactive computer program delivered on a tablet computer. Using qualitative methods, the authors observed promotora training and intervention delivery and conducted interviews with five promotoras to compare and contrast program implementation of both formats. The authors discuss the ways each format aided or challenged promotoras' intervention delivery. Findings reveal that some aspects of both formats enhanced intervention delivery by tapping into Latino health communication preferences and facilitating interpersonal communication, whereas other aspects hindered intervention delivery. This study contributes to our understanding of how community health workers use low- and high-tech small media formats when delivering health messages to Latinos.

Implementing a systematic approach to meeting patients' cancer and fertility needs: a review of the Fertile Hope Centers Of Excellence program.

PURPOSE: National guidelines recommend patients with cancer of reproductive age be informed of their risk for infertility resulting from cancer treatment. Despite existing technologies to preserve fertility, many patients report not receiving timely information about fertility risk, and oncology providers report multiple barriers to discussing or referring patients on this topic. METHODS: Nine cancer centers have been recognized as Fertile Hope Centers of Excellence, a designation awarded to cancer centers with an institutionalized approach to addressing fertility issues. Individual semistructured interviews were conducted with each of these centers to identify strengths of and challenges to their approaches. RESULTS: All institutions had procedures for the provision of topical professional and patient education and for notification of patients. Notification methods varied widely, from use of customized consent forms to highly automated electronic alerts for providers. Referral routines and enactment of institutional policies also differed. Key components of successful programs emerged, including the value of internal champions, affiliation with complementary programs, and resource sharing. CONCLUSION: The programs described provide examples of systems that can be assembled in different types of clinical settings, depending on the availability of resources and infrastructure. As institutions develop programs, metrics to evaluate notification systems, in particular, as well as the supportive program components, should be used so identification of best practices can continue. Widespread adoption of programs that incorporate the baseline elements identified will not only comply with national guidelines but also address patients' reproductive needs and fundamentally affect future quality of life.

Forcing the Navy to sell cigarettes on ships: how the tobacco industry and politicians torpedoed Navy tobacco control.

In 1986, the US Navy announced the goal of becoming smoke-free by 2000. However, efforts to restrict tobacco sales and use aboard the USS Roosevelt prompted tobacco industry lobbyists to persuade their allies in Congress to legislate that all naval ships must sell tobacco. Congress also removed control of ships' stores from the Navy. By 1993, the Navy abandoned its smoke-free goal entirely and promised smokers a place to smoke on all ships. Congressional complicity in promoting the agenda of the tobacco industry thwarted the Navy's efforts to achieve a healthy military workforce. Because of military lobbying constraints, civilian pressure on Congress may be necessary to establish effective tobacco control policies in the armed forces.

Making the immoral moral: consensual unions and birth satatus in cuban law and everyday practice, 1940-1958

This article explores the 1940 Cuban Constituent Assembly debates about consensual unions and birth status as legislators created a new legal process called equiparación de matrimonio civil that would grant to citizens in consensual unions the same rights and benefits that legally married citizens enjoyed. Equiparación, if granted, could enable a child born to unmarried parents to change his or her birth status in formal records. While some legislators considered the creation of the new constitution an opportunity to erase existing privileges and protections based upon outdated social and moral hierarchies embedded in Cuban legal structures, others argued that "family" issues had no place in a constitution. The Constituent Assembly's debates about birth status illuminate how issues concerning sexual propriety and family were intertwined with antidiscrimination efforts during Cuban state formation. Nevertheless, legislators' lofty ideas about equiparación contrast sharply with ordinary citizens' attempts to claim their newly extended rights in judicial courts. A comparison of the legislators' debates and ordinary Cubans' efforts in the courtrooms to claim equiparación exposes the core contradictions between maintaining discriminatory and disenfranchising social hierarchies and protecting the fundamental equality of citizens during a period of democratic renovation in Cuba in the 1930s and 1940s. On a broader level, this article links the history of the family, law, and state formation to narratives of historical change and the production and reproduction of social hierarchies based upon race, class, and gender in modern Latin America. (AU)

HPV knowledge, attitudes, and cultural beliefs among Hispanic men and women living on the Texas-Mexico border.

BACKGROUND: US Hispanic women have higher cervical cancer incidence rates than non-Hispanic White and African-American women and lower rates of cervical cancer screening. Knowledge, attitudes, and cultural beliefs may play a role in higher rates of infection of human papillomavirus (HPV) and decisions about subsequent diagnosis and treatment of cervical cancer. STUDY AIM: To explore the level of HPV knowledge, attitudes, and cultural beliefs among Hispanic men and women on the Texas-Mexico border. METHODOLOGICAL APPROACH: Informed by feminist ethnography, the authors used an interpretive approach to understand local respondents' concerns and interests. Focus group sessions were analyzed using thematic content analysis. RECRUITMENT AND SAMPLE: Promotoras (lay health workers) recruited participants using convenience sampling methods. Group sessions were held in public service centers in Brownsville. Participants' ages ranged from 19 to 76 years. METHODS ANALYSIS: Focus group discussions were audio-recorded and transcribed in Spanish. Researchers read and discussed all the transcripts and generated a coding list. Transcripts were coded using ATLAS.ti 5.0. KEY FINDINGS: Participants had little understanding about HPV and its role in the etiology of cervical cancer. Attitudes and concerns differed by gender. Women interpreted a diagnosis of HPV as a diagnosis of cancer and expressed fatalistic beliefs about its treatment. Men initially interpreted a diagnosis of HPV as an indication of their partners' infidelity, but after reflecting upon the ambiguity of HPV transmission, attributed their initial reaction to cultural ideals of machismo. Men ultimately were interested in helping their partners seek care in the event of a positive diagnosis. IMPLICATIONS FOR PRACTICE: Results suggest that understanding Hispanics' cultural norms and values concerning disease, sexuality, and gender is essential to the design and implementation of interventions to prevent and treat HPV and cervical cancer.

Advance and retreat: tobacco control policy in the U.S. military.

This archival study explored why military tobacco control initiatives have thus far largely failed to meet their goals. We analyzed more than 5,000 previously undisclosed internal tobacco industry documents made public via an online database and additional documents obtained from the U.S. military. In four case studies, we illustrate how pressures exerted by multiple political actors resulted in weakening or rescinding military tobacco control policy initiatives. Our findings suggest that lowering military smoking rates will require health policymakers to better anticipate and counter political opponents. The findings also suggest that effective tobacco control policies may require strong, explicit implementation instructions and high-level Department of Defense support. Finally, policy designers should also consider ways to reduce or eliminate existing perverse incentives to increase tobacco consumption, such as allowing exchange store tobacco sales to fund Morale, Recreation, and Welfare Programs.