Oral Mercaptopurine Adherence in Pediatric Acute Lymphoblastic Leukemia: A Survey Study From the Dana-Farber Cancer Institute Acute Lymphoblastic Leukemia Consortium.

Background: Oral chemotherapy nonadherence is a challenge in clinical oncology. During therapy for acute lymphoblastic leukemia (ALL), poor adherence to 6-mercaptopurine (6MP) increases relapse risk. Clinically significant nonadherence is reported in 30% of children treated for ALL on Children's Oncology Group (COG) trials. Whether nonadherence rates vary across regimens with different treatment schedules and modes of administration is unknown. Methods: We conducted an exploratory, cross-sectional survey study on parents of children (1-18 years) receiving continuation therapy on, or as per Dana-Farber Cancer Institute (DFCI) ALL Consortium Protocol 11-001. Treatment required weekly visits to the clinic and 14 days of oral 6MP every 3 weeks. Survey assessed self-reported sociodemographics, medication-taking, chemotherapy comprehension, and 6MP adherence; adherence survey items were developed from published surveys. Patients were grouped as nonadherent if they endorsed missing one 6MP dose during the last cycle, or more than one dose during prior cycles, for nonmedical reasons. Results: Sixty-two families completed the surveys, all of whom had evaluable adherence data. In total, 25% of patients met the study definition of nonadherence. Twenty-three percent reported that it was "not easy" to follow administration guidelines around the dairy intake and 57% requested more teaching and educational resources. Conclusion: Self-reported nonadherence to oral 6MP in the DFCI ALL Consortium is high, with rates similar to those observed in the COG. This suggests that the additional contact during weekly infusions on the DFCI is insufficient to address barriers affecting oral chemotherapy adherence.

The influence of affect on HPV vaccine decision making in an HPV vaccine naïve college student population.

The HPV vaccine is recommended for all adolescents starting at age 11, but coverage is low, especially in the young adult population. The CDC is prioritizing catch-up vaccination and has expanded recommendations for all young adults to age 26. College students may be ideal targets for HPV vaccine interventions as they typically have on-site clinics that offer prevention services and students are in the position to make decisions about their own healthcare. We examined the risk perceptions of 101 HPV vaccine-naïve college students, both in terms of risk cognition (beliefs about susceptibility to HPV-related cancers and genital warts) and affect (worry and fear regarding HPV-related health outcomes) as they relate to HPV vaccine intentions. Participants completed an online survey, reporting absolute and comparative risk perceptions for HPV-related cancers/genital warts, fear and worry related to getting HPV-related cancer and/or genital warts, desire for positive emotions, affective associations with the HPV vaccine, and intentions to get the HPV vaccine. More fear/worry about vaccination was directly associated with increased vaccine intentions. The perceived risk to intentions relation included an indirect effect via fear/worry. Desire for positive affect strengthened this relation. Positive affective associations with the HPV vaccine were also related to increased vaccine intentions. Given the public health impact of increasing HPV vaccine coverage for young adults, educational strategies framing the HPV vaccine positively while decreasing fear/worry related to negative health outcomes might increase interest in on-campus catch-up vaccination.

Stress reduction strategies in breast cancer: review of pharmacologic and non-pharmacologic based strategies.

Breast cancer is the most common cancer diagnosed in women. It is associated with multiple symptoms in both patients and caregivers, such as stress, anxiety, depression, sleep disturbance, and fatigue. Stress appears to promote cancer progression via activation of the sympathetic nervous system releasing epinephrine and norepinephrine as well as activation of hypothalamic-pituitary-adrenal axis releasing cortisol. These stress hormones have been shown to promote the proliferation of cancer cells. This review focuses on stress-reducing strategies which may decrease cancer progression by abrogating these pathways, with a main focus on the ß-adrenergic signaling pathway. Patients utilize both non-pharmacologic and pharmacologic strategies to reduce stress. Non-pharmacologic stress-reduction strategies include complementary and alternative medicine techniques, such as meditation, yoga, acupuncture, exercise, use of natural products, support groups and psychology counseling, herbal compounds, and multivitamins. Pharmacologic strategies include abrogating the ß2-adrenergic receptor signaling pathway to antagonize epinephrine and norepinephrine action on tumor and immune cells. ß-Blocker drugs may play a role in weakening the pro-migratory and pro-metastatic effects induced by stress hormones in cancer and strengthening the anti-tumor immune response. Preclinical models have shown that non-selective ß1/2-blocker use is associated with a decrease in tumor growth and metastases and clinical studies have suggested their positive impact on decreasing breast cancer recurrence and mortality. Thus, non-pharmacological approaches, along with pharmacological therapies part of clinical trials are available to cancer patients to reduce stress, and have promise to break the cycle of cancer and stress.

Factors associated with biomedical research participation within community-based samples across 3 National Cancer Institute-designated cancer centers.

BACKGROUND: Engaging diverse populations in biomedical research, including biospecimen donation, remains a national challenge. This study examined factors associated with an invitation to participate in biomedical research, intent to participate in biomedical research in the future, and participation in biomedical research and biospecimen donation among a diverse, multilingual, community-based sample across 3 distinct geographic areas. METHODS: Three National Cancer Institute-designated cancer centers engaged in community partnerships to develop and implement population health assessments, reaching a convenience sample of 4343 participants spanning their respective catchment areas. Data harmonization, multiple imputation, and multivariable logistic modeling were used. RESULTS: African Americans, Hispanic/Latinos, and other racial minority groups were more likely to be offered opportunities to participate in biomedical research compared to whites. Access to care, history of cancer, educational level, survey language, nativity, and rural residence also influenced opportunity, intent, and actual participation in biomedical research. CONCLUSIONS: Traditionally underserved racial and ethnic groups reported heightened opportunity and interest in participating in biomedical research. Well-established community partnerships and long-standing community engagement around biomedical research led to a diverse sample being reached at each site and may in part explain the current study findings. However, this study illustrates an ongoing need to establish trust and diversify biomedical research participation through innovative and tailored approaches. National Cancer Institute-designated cancer centers have the potential to increase opportunities for diverse participation in biomedical research through community partnerships and engagement. Additional work remains to identify and address system-level and individual-level barriers to participation in both clinical trials and biospecimen donation for research.

Life Course Stage and Social Support Mobilization for End-of-Life Caregivers.

Caregivers of terminally ill patients are at risk for anxiety, depression, and social isolation. Social support from friends, family members, neighbors, and health care professionals can potentially prevent or mitigate caregiver strain. While previous research documents the importance of social support in helping end-of-life caregivers cope with caregiving demands, little is known about differences in social support experiences among caregivers at different life course stages. Using life course theory, this study analyzes data from in-depth interviews with 50 caregivers of patients enrolled in hospice services to compare barriers to mobilizing social support among caregivers at two life course stages: midlife caregivers caring for parents and older adult caregivers caring for spouses/partners. Older adult caregivers reported different barriers to mobilizing social support compared with midlife caregivers. Findings enhance the understanding of how caregivers' life course stage affects their barriers to mobilization of social support resources.

Geographic and demographic features of neuroendocrine tumors in the United States of America: A population-based study.

BACKGROUND: The incidence of neuroendocrine tumors (NETs) is rapidly rising. There are very few studies investigating the role of sociodemographic factors in NETs. This study was aimed at examining how geographic and sociodemographic characteristics shape outcomes in the NET population. METHODS: A retrospective analysis using the Surveillance, Epidemiology, and End Results database was performed, and the NET patient population from 1973 to 2015 was studied. Univariate and multivariable analyses were performed to evaluate patients' disease-specific survival (DSS) and overall survival (OS). Geographic and sociodemographic factors, including the location of residence (urban area [UA] vs rural area [RA]), sex, race, insurance status, and marital status, were included in the analysis. RESULTS: A total of 53,034 patients (5517 in RAs and 47,517 in UAs) were included in the analysis. The incidence of NETs was found to be rising in both RAs and UAs but more rapidly in RAs (with the highest incidence in 2006-2015: 5.93 per 100,000 in RAs vs 4.10 per 100,000 in UAs). Patients from RAs presented at advanced stages in comparison with patients from UAs (regional, 18% vs 16%; distant, 15% vs 13%; P < .01). In the multivariable model, RA patients had a trend toward poorer OS (hazard ratio, 1.05; P = .053) in comparison with UA patients. The multivariable analysis showed significantly worse DSS and OS for uninsured, single, and male patients in comparison with insured, married, and female patients, respectively. CONCLUSIONS: This study has identified sociodemographic disparities in NET outcomes. Access to health care could be a potential contributing factor, although differences in environmental exposure, health behavior, and tumor biology could also be responsible.

Deciphering the Signal From the Noise: Caregivers' Information Appraisal and Credibility Assessment of Cancer-Related Information Exchanged on Social Networking Sites.

With the rise in the use of the Internet for health-related purposes, social networking sites (SNSs) have become a prominent platform for cancer communication and information exchange. Studies of cancer communication on SNS have mostly focused on understanding the quantity, content, quality, and user engagement (eg, likes and comments) with cancer-related information on SNS. There is less of an understanding of when and why people coping with cancer turn to SNS for cancer-related information, and how users appraise the credibility of cancer-related information obtained on SNS. In this study, we use data from in-depth qualitative interviews with 40 primary caregivers of pediatric patients with cancer to examine how cancer caregivers engage in information appraisal and credibility assessment of cancer-related information obtained on SNS. Findings show that cancer caregivers turned to SNS for cancer-related information because information on SNS was immediate, targeted in response to specific caregiver questions and concerns, and tailored to the specific information needs of cancer caregivers. Cancer caregivers evaluated the credibility of cancer-related information obtained on SNS through assessment of the SNS user who posted the information, frequency the same information was shared, and external corroboration. Findings have important implications for cancer communication and information interventions and point to elements of SNS cancer communication that can be integrated into health professional-facilitated communication and cancer information strategies.

Use of social network analysis in the development, dissemination, implementation, and sustainability of health behavior interventions for adults: A systematic review.

Interest in conceptualizing, measuring, and applying social network analysis (SNA) in public health has grown tremendously in recent years. While these studies have broadened our understanding of the role that social networks play in health, there has been less research that has investigated the application of SNA to inform health-related interventions. This systematic review aimed to capture the current applied use of SNA in the development, dissemination, implementation, and sustainability of health behavior interventions for adults. We identified 52 articles published between 2004 and 2016. A wide variety of study settings were identified, most commonly in the US context and most often related to sexual health and HIV prevention. We found that 38% of articles explicitly applied SNA to inform some aspect of interventions. Use of SNA to inform intervention development (as opposed to dissemination, implementation, or sustainability) was most common. The majority of articles represented in this review (n = 39) were quantitative studies, and 13 articles included a qualitative component. Partial networks were most represented across articles, and over 100 different networks measures were assessed. The most commonly described measures were network density, size, and degree centrality. Finally, very few articles defined SNA and not all articles using SNA were theoretically-informed. Given the nascent and heterogeneous state of the literature in this area, this is an important time for the field to coalesce on terminology, measures, and theoretical frameworks. We highlight areas for researchers to advance work on the application of SNA in the design, dissemination, implementation and sustainability of behavioral interventions.

The treasure of now and an uncertain future: Delay discounting and health behaviors among cancer survivors.

BACKGROUND: The identification of new therapeutic targets to improve health behaviors among cancer survivors (CS) is likely to improve cancer treatment outcomes. Delay discounting (DD) rate is the degree to which one devalues rewards as a function of time to receipt. Lower DD rates (ie, prioritizing long-term over immediate rewards) are associated with healthier behaviors. CS often experience distress and thoughts of early mortality that can potentially shift priorities to the present and negatively impact DD rates, especially when newly diagnosed. Understanding relations between DD and health behaviors among CS will contribute to the examination of DD as a therapeutic target for improving health behaviors for CS. METHOD: CS (n = 1001) were recruited from a web panel and administered a web-based questionnaire. Multivariate models examined relations among DD rate, years since diagnosis, and 10 health behavior indicators. We hypothesized that 1) higher DD rates would be associated with fewer years since diagnosis, and 2) lower DD rates would be associated with healthier behaviors, moderated by years since diagnosis. RESULTS: In general, higher DD rates were associated with fewer years since diagnosis. Higher DD rates were associated with more alcohol consumption, cigarette smoking, other tobacco use, tanning booth use, and conversely, greater adherence to annual primary care visits. A significant interaction between DD rate and years since diagnosis was not found. CONCLUSION: Lower DD rates are associated with several important healthy lifestyle behaviors. DD rate is a promising therapeutic target for new interventions to improve multiple health behaviors among CS.

Is Cancer Information Exchanged on Social Media Scientifically Accurate?

Cancer patients and their caregivers are increasingly using social media as a platform to share cancer experiences, connect with support, and exchange cancer-related information. Yet, little is known about the nature and scientific accuracy of cancer-related information exchanged on social media. We conducted a content analysis of 12 months of data from 18 publically available Facebook Pages hosted by parents of children with acute lymphoblastic leukemia (N = 15,852 posts) and extracted all exchanges of medically-oriented cancer information. We systematically coded for themes in the nature of cancer-related information exchanged on personal Facebook Pages and two oncology experts independently evaluated the scientific accuracy of each post. Of the 15,852 total posts, 171 posts contained medically-oriented cancer information. The most frequent type of cancer information exchanged was information related to treatment protocols and health services use (35%) followed by information related to side effects and late effects (26%), medication (16%), medical caregiving strategies (13%), alternative and complementary therapies (8%), and other (2%). Overall, 67% of all cancer information exchanged was deemed medically/scientifically accurate, 19% was not medically/scientifically accurate, and 14% described unproven treatment modalities. These findings highlight the potential utility of social media as a cancer-related resource, but also indicate that providers should focus on recommending reliable, evidence-based sources to patients and caregivers.

Social support, flexible resources, and health care navigation.

Recent research has focused attention on the role of patients' and clinicians' cultural skills and values in generating inequalities in health care experiences. Yet, examination of how social structural factors shape people's abilities to build, refine, and leverage strategies for navigating the health care system have received less attention. In this paper I place focus on one such social structural factor, social support, and examine how social support operates as a flexible resource that helps people navigate the health care system. Using the case of families navigating pediatric cancer care this study combines in-depth interviews with parents of pediatric cancer patients (N = 80), direct observation of clinical interactions between families and physicians (N = 73), and in-depth interviews with pediatric oncologists (N = 8). Findings show that physicians assess parental visibility in the hospital, medical vigilance, and adherence to their child's treatment and use these judgments to shape clinical decision-making. Parents who had help from their personal networks had more agility in balancing competing demands, and this allowed parents to more effectively meet institutional expectations for appropriate parental involvement in the child's health care. In this way, social support served as a flexible resource for some families that allowed parents to more quickly adapt to the demands of caring for a child with cancer, foster productive interpersonal relationships with health care providers, and play a more active role in their child's health care.

Does Black Socioeconomic Mobility Explain Recent Progress Toward Black-White Residential Integration?

Studies of racial residential segregation have found that black-white segregation in U.S. metropolitan areas has declined slowly but steadily since the early 1970s. As of this writing, black-white residential segregation in the United States is approximately 25 % lower than it was in 1970. To identify the sources of this decline, we used individual-level, geocoded data from the Panel Study of Income Dynamics (PSID) to compare the residential attainment of different cohorts of blacks. We analyzed these data using Blinder-Oaxaca regression decomposition techniques that partition the decline in residential segregation among cohorts into the decline resulting from (1) changes in the social and economic characteristics of blacks and (2) changes in the association between blacks' social and economic characteristics and the level of residential segregation they experience. Our findings show that black cohorts entering adulthood prior to the civil rights movement of the 1960s experienced consistently high levels of residential segregation at middle age, but that cohorts transitioning to adulthood during and after this period of racial progress experienced significantly lower levels of residential segregation. We find that the decline in black-white residential segregation for these later cohorts reflects both their greater social and economic attainment and a strengthening of the association between socioeconomic characteristics and residential segregation. Educational gains for the post-civil rights era cohorts and improved access to integrated neighborhoods for high school graduates and college attendees in these later cohorts were the principal source of improved residential integration over this period.

Culture, Styles of Institutional Interactions, and Inequalities in Healthcare Experiences.

In this study, I examine how parents' cultural knowledge shapes experiences navigating the healthcare system after a child is diagnosed with cancer and the extent to which differential styles of health-related advocacy contribute to inequalities in healthcare experiences. I combine data from parents' perspectives, physicians' perspectives, and direct observation of clinical interactions and find three overarching styles of health-related advocacy. Findings show that cultural dispositions and competencies shape parents' abilities to effectively navigate the healthcare system, and physicians differentially reward each style of health-related advocacy. Parents' styles of advocacy shape relationships with clinicians, physicians' perceptions of families, and physicians' strategies for interacting with families. These findings refine understanding of the mechanisms through which social class manifests in clinical interactions, shapes patient-physician relationships, and contributes to unequal healthcare experiences.

Where people look for online health information.

OBJECTIVES: To identify health-related websites Americans are using, demographic characteristics associated with certain website type and how website type shapes users' online information seeking experiences. METHODS: Data from the Health Information National Trends Survey 4 Cycle 1 were used. User-identified websites were categorised into four types: government sponsored, commercially based, academically affiliated and search engines. Logistic regression analyses examined associations between users' sociodemographic characteristics and website type, and associations between website type and information search experience. RESULTS: Respondents reported using: commercial websites (71.8%), followed by a search engines (11.6%), academically affiliated sites (11.1%) and government-sponsored websites (5.5%). Older age was associated with the use of academic websites (OR 1.03, 95% CI 1.02, 1.04); younger age with commercial website use (OR 0.97, 95% CI 0.95, 0.98). Search engine use predicted increased levels of frustration, effort and concern over website information quality, while commercial website use predicted decreased levels of these same measures. DISCUSSION: Health information seekers experience varying levels of frustration, effort and concern related to their online searching. CONCLUSION: There is a need for continued efforts by librarians and health care professionals to train seekers of online health information to select websites using established guidelines and quality criteria.

Cancer Communication on Social Media: Examining How Cancer Caregivers Use Facebook for Cancer-Related Communication.

BACKGROUND: Americans are increasingly using social media (such as Facebook, YouTube, and Twitter) for health-related communication. Much of the previous research on social media and health communication has focused on Facebook groups related to a specific disease or Facebook pages related to an advocacy organization. Less is known about how people communicate about cancer on personal Facebook pages. OBJECTIVE: In this study, we expand upon previous research by examining how cancer caregivers use personal Facebook pages for cancer-related communication. METHODS: We examined themes in cancer-related exchanges through a content analysis of 12 months of data from 18 publically available Facebook pages hosted by parents of children with acute lymphoblastic leukemia (15 852 total posts). RESULTS: Six themes emerged: (1) documenting the cancer journey, (2) sharing emotional strain associated with caregiving, (3) promoting awareness and advocacy about pediatric cancer, (4) fundraising, (5) mobilizing support, and (6) expressing gratitude for support. CONCLUSIONS: Building upon previous research documenting the increasing use of social media for health-related communication and support, our findings show that personal Facebook pages offer a platform for cancer caregivers to share their cancer-related experiences, promote advocacy and awareness, and mobilize social support. IMPLICATIONS FOR PRACTICE: Providers must recognize the importance of social media as a vehicle for support and communication for families of children with cancer. Nurses should educate parents on how to appraise information obtained through Facebook using evidence-based guidelines. Providers can encourage caregivers to use Facebook as a tool for communication, information, and support.

Communication and Exchange of Specialized Health-Related Support Among People With Experiential Similarity on Facebook.

Social support is an important factor that shapes how people cope with illness, and health-related communication among peers managing the same illness (network ties with experiential similarity) offers specialized information, resources, and emotional support. Facebook has become a ubiquitous part of many Americans' lives, and may offer a way for patients and caregivers experiencing a similar illness to exchange specialized health-related support. However, little is known about the content of communication among people who have coped with the same illness on personal Facebook pages. We conducted a content analysis of 12 months of data from 18 publicly available Facebook pages hosted by parents of children with acute lymphoblastic leukemia, focusing on communication between users who self-identified as parents of pediatric cancer patients. Support exchanges between users with experiential similarity contained highly specialized health-related information, including information about health services use, symptom recognition, compliance, medication use, treatment protocols, and medical procedures. Parents also exchanged tailored emotional support through comparison, empathy, encouragement, and hope. Building upon previous research documenting that social media use can widen and diversify support networks, our findings show that cancer caregivers access specialized health-related informational and emotional support through communication with others who have experienced the same illness on personal Facebook pages. These findings have implications for health communication practice and offer evidence to tailor M-Health interventions that leverage existing social media platforms to enhance peer support for patients and caregivers.

Examining Social Capital and Its Relation to Breast and Cervical Cancer Screening among Underserved Latinas in the U.S.

Many Latinos in the U.S. experience structural barriers to health care. Social capital and its implications for health and access to health care among this group are not well understood by researchers. This study examined associations between social capital and breast and cervical cancer screening adherence among a sample of 394 predominately Puerto Rican and Dominican women. Data were collected at baseline from Latinas attending screening education programs in Buffalo, New York and New York City in 2011-2012. Social capital was higher among Latinas who were older, better educated, insured, and spoke English. In multivariable logistic regression, a one unit increase in social capital index score was associated with greater adherence to Pap test (OR = 1.61), clinical breast exam (OR = 1.47) and mammography screening (OR = 1.50). Social capital should be further explored as a strategy to facilitate breast and cervical cancer screening among underserved Latinas.