Socioeconomic Factors and Adherence to Health Care Recommendations in Adolescent and Young Adult Cancer Survivors.

Purpose: The majority of adolescent and young adult (AYA) cancer survivors do not receive recommended health care surveillance after therapy. We used cross-sectional survey data to evaluate the impact of income, education, marital status, and insurance on health care adherence among AYA survivors. Methods: Eligible survivors were 18-39 years at diagnosis with invasive malignancy, 1-5 years from therapy completion. Online surveys assessed sociodemographic factors and self-report of completion of recommended health care services. Diagnosis and treatment data were abstracted from medical records. Multivariable logistic regression calculated odds ratios (ORs) and 95% confidence intervals (CIs) for adherence in relation to socioeconomic status and support. Results: Of 344 participants, 36% were adherent to at least 80% of recommendations. Adherence varied by cancer type: 34% for breast cancer, 52% for leukemia/lymphoma, 23% for other tumors. Adherence rates were similar among White, Asian, and Hispanic/Latinx patients. Lower adherence was associated with lower education (OR: 0.43; 95% CI: 0.23-0.80 for <4-year college degree) and lower annual income (OR: 0.51; 95% CI: 0.28-0.95 for $41,000-$80,000; OR: 0.40; 95% CI: 0.19-0.86 for ≤$40,000). Adherence decreased with decreasing income levels among those who were 1 to less than 3 years after diagnosis (OR: 0.25; 95% CI: 0.07-0.93 for $81,000-$120,000; OR: 0.24; 95% CI: 0.07-0.84 for $41,000-$80,000; OR: 0.13; 95% CI: 0.03-0.60 for ≤$40,000). Conclusion: Risk of nonadherence to health care guidelines was associated with lower income and lower education among AYA cancer survivors. Identification of these risks and related barriers to adherence in AYA survivors will inform interventions designed to meet needs of these high-risk groups, particularly during the first years after diagnosis. Trial Registration: NCT02192333.

Cancer survivorship care for young adults: a risk-stratified, multicenter randomized controlled trial to improve symptoms.

PURPOSE: Young adult (YA) cancer survivors have high rates of adverse health and psychosocial outcomes. This risk-stratified, multicenter, randomized controlled trial (RCT) compared a self-management survivorship intervention to usual care in YA survivors with symptoms of cancer-related distress, insomnia, fatigue, pain, and/or depression. METHODS: Eligibility included age 18-39 at diagnosis with an invasive malignancy in the previous 1-5 years. Baseline assessment determined "high need" participants, with 2-5 elevated targeted symptoms. We randomized high need participants to intervention or usual care and offered intervention participants a survivorship clinic visit, which included mutually decided action plans for symptoms. Follow-up calls at 1 and 3 months after the clinic visit reviewed action plan progress. Outcomes compared rates of improved symptoms for intervention vs usual care at 6 months and 12 months. RESULTS: N = 344 completed baseline assessment, with n = 147 (43%) categorized as high need and randomized. Of n = 73 randomized to the intervention, n = 42 (58%) did not attend their survivorship clinic visit. In intent-to-treat analyses, aggregate symptom scores did not differ between arms, though distress improved for 46% in the intervention arm at 6 months compared to 18% in usual care (p = 0.03) among those with elevated distress at baseline. CONCLUSIONS: Distress improved for YAs who received self-management survivorship care. However, the study demonstrates a need for alternative strategies for providing YA survivorship care. TRIAL REGISTRATION: NCT02192333 IMPLICATIONS FOR CANCER SURVIVORS: While YA survivors demonstrate some improved distress when provided survivorship care, to make care accessible and effective, they require options such as remote delivery of care.

Characterization of HNRNPA1 mutations defines diversity in pathogenic mechanisms and clinical presentation.

Mutations in HNRNPA1 encoding heterogeneous nuclear ribonucleoprotein (hnRNP) A1 are a rare cause of amyotrophic lateral sclerosis (ALS) and multisystem proteinopathy (MSP). hnRNPA1 is part of the group of RNA-binding proteins (RBPs) that assemble with RNA to form RNPs. hnRNPs are concentrated in the nucleus and function in pre-mRNA splicing, mRNA stability, and the regulation of transcription and translation. During stress, hnRNPs, mRNA, and other RBPs condense in the cytoplasm to form stress granules (SGs). SGs are implicated in the pathogenesis of (neuro-)degenerative diseases, including ALS and inclusion body myopathy (IBM). Mutations in RBPs that affect SG biology, including FUS, TDP-43, hnRNPA1, hnRNPA2B1, and TIA1, underlie ALS, IBM, and other neurodegenerative diseases. Here, we characterize 4 potentially novel HNRNPA1 mutations (yielding 3 protein variants: *321Eext*6, *321Qext*6, and G304Nfs*3) and 2 known HNRNPA1 mutations (P288A and D262V), previously connected to ALS and MSP, in a broad spectrum of patients with hereditary motor neuropathy, ALS, and myopathy. We establish that the mutations can have different effects on hnRNPA1 fibrillization, liquid-liquid phase separation, and SG dynamics. P288A accelerated fibrillization and decelerated SG disassembly, whereas *321Eext*6 had no effect on fibrillization but decelerated SG disassembly. By contrast, G304Nfs*3 decelerated fibrillization and impaired liquid phase separation. Our findings suggest different underlying pathomechanisms for HNRNPA1 mutations with a possible link to clinical phenotypes.

A Multivariate Analysis of Pain and Distress in Adults Undergoing BMAB.

Clinicians routinely perform bone marrow aspiration and biopsy (BMAB) to diagnose cancer and evaluate disease status; however, few studies address pain and distress with BMAB. A prospective descriptive-correlational design examined patients' (N = 152) ratings of pain intensity (numeric rating scale, 0-10) and distress (distress thermometer) at baseline and 5 min and 1 hr postprocedure. Data were analyzed using descriptive statistics, chi-square, and linear regression models. Mean postprocedure pain intensity at 5 min was moderate, 5.56 (SD = 3.03), and opioid use was associated with decreased pain at 1 hr (p < .001). Preprocedure administration of anxiolytics had no significant effect on distress reduction (p = .88). Being female, first-time biopsy, and increased preprocedure pain were significant predictors of postprocedure distress (p < .001). Treating anxiety alone may not be sufficient to lessen pain and distress. Individualized plans of care should be based on patient risk and response to procedure.

Lasting effects of cancer and its treatment on employment and finances in adolescent and young adult cancer survivors.

BACKGROUND: The impact of cancer and its treatment on employment and financial burden in adolescents/young adults (AYAs) is not fully known. METHODS: Eligibility for this cross-sectional study of AYA cancer survivors included the diagnosis of a malignancy between ages 18 and 39 years and survey completion within 1 to 5 years from diagnosis and ≥1 year after therapy completion. Participants were selected randomly from the tumor registries of 7 participating sites and completed an online patient-reported outcomes survey to assess employment and financial concerns. Treatment data were abstracted from medical records. Data were analyzed across diagnoses and by tumor site using logistic regression and Wald-based 95% confidence intervals adjusting for age (categorized), sex, insurance status, education (categorized), and treatment exposures. RESULTS: Participants included 872 survivors (breast cancer, n = 241; thyroid cancer, n = 126; leukemia/lymphoma, n = 163; other malignancies, n = 342). Exposure to chemotherapy in breast cancer survivors was associated with an increase in self-reported mental impairment in work tasks (odds ratio [OR], 2.66) and taking unpaid time off (OR, 2.62); survivors of "other" malignancies reported an increase in mental impairment of work tasks (OR, 3.67) and borrowing >$10,000 (OR, 3.43). Radiation exposure was associated with an increase of mental impairment in work tasks (OR, 2.05) in breast cancer survivors, taking extended paid time off work in thyroid cancer survivors (OR, 5.05), and physical impairment in work tasks in survivors of "other" malignancies (OR, 3.11). Finally, in survivors of "other" malignancies, having undergone surgery was associated with an increase in physical (OR, 3.11) and mental impairment (OR, 2.31) of work tasks. CONCLUSIONS: Cancer treatment has a significant impact on AYA survivors' physical and mental work capacity and time off from work.

Survivorship Care Planning for Young Adults After Cancer Treatment: Understanding Care Patterns and Patient-Reported Outcomes.

PURPOSE: Young adult survivors (YAS) of cancer experience late effects of treatment similar to older adult survivors (AS). Online health tools such as Internet-based survivorship care plans (SCPs) can provide access to information about late effects and symptom management, but little is known about SCP patterns of use among YAS. METHODS: An Internet-based cross-sectional survey was completed over 24 months. Participants were individuals diagnosed with cancer between 18 and 39 years (YAS, n = 611) or 40-60 years (AS, n = 1742), who were 2-20 years postdiagnosis, and who created an Internet-based SCP. Demographics, treatment-related variables, satisfaction with SCP, communication of SCP, and patient-reported late effects (fatigue, neurocognitive, sexual, cardiovascular, pulmonary, or second cancers) were collected. RESULTS: YAS were primarily female (71%), Caucasian (78%), college educated (65%), and generated the SCP without assistance (76%). YAS reported satisfaction with content (93%) and shared content with providers (71%). A higher proportion of YAS than AS were male (29% vs. 17%, p < 0.001), lived internationally (23% vs. 17%, p = 0.003), and endorsed oncologist-led survivorship care (47% vs. 41%, p = 0.001). YAS reported concerns about neurocognitive performance (56%) and fatigue (50%). Overall, YAS reported equivalent or fewer late effects than AS across all domains. CONCLUSIONS: YAS report high satisfaction with the online SCP, as well as a high symptom burden, although the latter were reported less than for AS.

The use of a patient-reported outcome questionnaire to assess cancer survivorship concerns and psychosocial outcomes among recent survivors.

PURPOSE: Survivor distress is well represented in the literature, but less is known about survivors' concerns and how these relate to adaptation. Using a newly designed Survivorship Concern Scale, we examined concerns and their relationship to psychosocial adaptation among recent breast cancer (BC) survivors. METHODS: One hundred forty-three stage 0-III BC survivors completed an online assessment including the Survivorship Concern Scale (0-3 scale; alpha = 0.91), unmet needs, quality of life (QoL), and anxiety and depressive symptoms within 1 year of end of treatment. RESULTS: Participants were predominately white (76%), middle-aged (51 years), married (70%), and college educated (79%). Eighty-two percent were stage I or II at diagnosis. Mean degree of survivorship concern was moderate (M = 1.75, SD = 0.70) though variable (range = 0.12-3.00). Survivorship concerns were not significantly related to disease, treatment, or demographic variables except income (p = 0.02). Degree of survivorship concern was significantly associated with all indices of psychosocial adaptation: unmet need (r = 0.50), physical and mental QoL (r = -0.32 and r = -0.32, respectively), depressive symptoms (r = 0.21), and anxiety symptoms (r = 0.51; all p < 0.001). Binary logistic regression suggested that each one-point increase in degree of average concern increased the odds for elevated depressive symptoms by 2.83 (p = 0.03) and increased the odds of elevated anxiety symptoms by 3.69 (p < 0.001). CONCLUSIONS: Survivorship concerns in the year following treatment are moderate but variable. Concerns are associated with QoL, unmet need, and psychosocial adaptation. Adequately addressing concerns may be a way to improve psychosocial outcomes early in the survivorship trajectory.

Feasibility Study of an Electronic Interface Between Internet-Based Survivorship Care Plans and Electronic Medical Records.

PURPOSE: Survivorship care plans (SCPs) are recommended for all cancer survivors. Myriad barriers to implementation exist. This study was performed to evaluate the feasibility of interface development between an SCP and an electronic medical record (EMR). METHODS: An information technology application was developed to extract data from the EMR in use at our center (Epic). Data were transferred to autopopulate an Internet-based tool for creation of SCPs (LIVESTRONG Care Plan) that had been previously used for the creation of more than 35,000 plans. RESULTS: Data (demographic characteristics, surgeries, chemotherapy drugs, radiation site) were extracted from the EMR and transferred to the care plan platform, without transfer of protected health information. Care plans were created and transferred back to the EMR. During clinical testing, SCPs were created by nurse practitioners during scheduled clinic visits for 146 sequential, eligible patients (67% breast cancer, 33% colorectal cancer). All patients received completed care for a single cancer diagnosis at our institution. All data points that were automatically populated were reviewed by practitioners, and missing/blank data fields were populated manually when necessary. Data entered into generated care plans were accurate in 97% of audited cases, and the process of care plan generation could be completed in < 1 minute. CONCLUSION: This is a feasible solution for the autopopulation of SCPs from the EMR. It represents a future methodology through which widespread implementation of SCPs may be undertaken. Future directions include further clinical testing, assessment of provider-perceived usefulness, and integration into routine clinical care.

Medicina e saúde pública na América Latina: uma história / História e Saúde / Medicine ans public health in Latin America: a history

Este livro incorpora as mais recentes pesquisas no campo da medicina e da saúde pública dando destaque a temas desde os encontros das medicinas indígena e africana com a europeia até os desafios atuais ocasionados pela globalização das práticas de medicina e saúde, percorrendo a história da América Latina desde o período colonial até o século XXI. Os autores trabalham na perspectiva de que o conhecimento científico ocidental não foi simplesmente "transportado" de fora e "imposto" à América Latina. A região não é entendida como mera sucursal secundária e passiva das matrizes europeias e norte-americanas e, sim, como "uma arena ativa, inovadora, com iniciativas pioneiras" no âmbito científico. Sob essa ótica, analisam o papel e a atuação da Fundação Rockefeller na implementação de modelos de saberes acadêmicos na América Latina. Discutem de maneira consistente questões de ordem política e social que se encontram na base dos embates entre os Estados nacionais e os grupos sociais que resistem a determinações concernentes às práticas de políticas públicas de saúde.(AU)

Representation of Latinos and Blacks in screening for and enrollment into preventive HIV vaccine trials in New York City.

INTRODUCTION: In the United States, Latinos and Blacks are disproportionately affected by HIV/AIDS, but have been underrepresented in HIV vaccine trials. We assessed screening and enrollment of Blacks and Latinos for preventive HIV vaccine trials conducted in New York City, 2009-2012. METHODS: A retrospective analysis was conducted among 18-50 year old men and transgender women screening for four preventive phase 1 and 2 HIV vaccine trials. Demographic, recruitment, and behavioral/medical eligibility data and outcome of screening were examined. To determine factors associated with enrollment, a multivariable logistic regression analysis was performed. RESULTS: Among 6077 individuals who provided contact information, 2536 completed a phone pre-screen. 96 (1.6% of recruitment contacts) enrolled. Latinos were 35.7% of recruitment contacts, but 17.7% of those enrolled, whereas Blacks were 22.5% and 32.3%, respectively. Among all Latinos, nearly one third were excluded for being uncircumcised, an eligibility criterion for several studies. In multivariable analysis among potentially eligible potential participants, controlling for age and recruitment method, Latinos were less likely than Whites to enroll in a preventive HIV vaccine trial (aOR 0.52, 95% CI 0.28-0.95) whereas Blacks were as likely as Whites (aOR 0.99, 95% CI 0.59-1.67). Individuals recruited through print advertisements, social media/internet, referral, and other modes were more likely to enroll compared to those recruited through in-person outreach, controlling for age and race/ethnicity. CONCLUSIONS: Targeted outreach has led to substantial inclusion of Latinos and Blacks, with Blacks comprising almost a third of those enrolled in these preventive HIV vaccine trials. Latinos, however, were less likely to enroll compared to Whites. Circumcision status as an eligibility criterion partly accounts for this, but further studies are warranted to address the reasons Latinos decide not to participate in preventive HIV vaccine trials.

Subglacial lake drainage detected beneath the Greenland ice sheet.

The contribution of the Greenland ice sheet to sea-level rise has accelerated in recent decades. Subglacial lake drainage events can induce an ice sheet dynamic response--a process that has been observed in Antarctica, but not yet in Greenland, where the presence of subglacial lakes has only recently been discovered. Here we investigate the water flow paths from a subglacial lake, which drained beneath the Greenland ice sheet in 2011. Our observations suggest that the lake was fed by surface meltwater flowing down a nearby moulin, and that the draining water reached the ice margin via a subglacial tunnel. Interferometric synthetic aperture radar-derived measurements of ice surface motion acquired in 1995 suggest that a similar event may have occurred 16 years earlier, and we propose that, as the climate warms, increasing volumes of surface meltwater routed to the bed will cause such events to become more common in the future.

Comparing genetic counselor's and patient's perceptions of needs in prenatal chromosomal microarray testing.

OBJECTIVE: Chromosome microarray analysis is poised to take a significant place in the prenatal setting given its increased yield over standard karyotyping, but concerns regarding ethical and counseling challenges remain, especially associated with the risk of uncertain and incidental findings. Guidelines recommend patients receiving prenatal screening to undergo genetic counseling prior to testing, but little is known about women's specific pre-testing and post-testing informational needs, as well as their preference for return of various types of results. METHODS: The present study surveys 199 prenatal genetic counselors who have counseled patients undergoing chromosome microarray analysis testing and 152 women who have undergone testing on the importance of understanding pre-test information, return of various types of results, and resources made available following an abnormal finding. RESULTS: Counselors and patients agree on many aspects, although findings indicate patients consider all available information very important, while genetic counselors give more varying ratings. CONCLUSION: Counseling sessions would benefit from information personalized to a patient's particular needs and a shared decision-making model, to reduce informational overload and avoid unnecessary anxiety. Additionally, policies regarding the return of various types of results are needed. © 2015 John Wiley & Sons, Ltd.

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.

Role of patient treatment beliefs and provider characteristics in establishing patient-provider relationships.

BACKGROUND: Positive patient-provider relationships have been associated with improved depression treatment outcomes. Little is known about how patient treatment beliefs influence patient-provider relationships, specifically treatment alliance and shared decision making in primary care (PC). OBJECTIVE: We evaluated the relationship between patient treatment beliefs and patient-provider relationships by gender, race and current depression. METHODS: We used a deductive parallel convergent mixed method design with cross-sectional data. Participants were 227 Black and White patients presenting with depression symptoms in PC settings. Individuals were randomized into either a quantitative survey (n = 198) or qualitative interview (n = 29) group. We used multiple ordinary least squares regression to evaluate the association between patient beliefs, as measured by the Treatment Beliefs Scale and the Medication Beliefs Scale, and treatment alliance or shared decision making. We concurrently conducted thematic analyses of qualitative semistructured interview data to explicate the nature of patient-provider relationships. RESULTS: We found that patients who believed their provider would respectfully facilitate depression treatment reported greater bond, openness and shared decision making with their provider. We also identified qualitative themes of physicians listening to, caring about and respecting patients. Empathy and emotive expression increased patient trust in PC providers as facilitators of depression treatment. CONCLUSIONS: This work systematically demonstrated what many providers anecdotally believe: PC environments in which individuals feel safe sharing psychological distress are essential to early identification and treatment of depression. Interprofessional skills-based training in attentiveness and active listening may influence the effectiveness of depression intervention.

Gênese da saúde global: a Fundação Rockefeller no Caribe e na América Latina / Genesis of global health: the Rockefeller Foundation in the Caribbean and Latin America

O nascimento da chamada Saúde Global e as relações criadas entre agentes globais e locais de saúde pública em regiões como a América Latina e o Caribe são abordados de forma totalmente inovadora. O autor, pesquisador pioneiro no estudo da América Latina como laboratório médico, partiu dos arquivos médicos nacionais da Costa Rica para investigar como foi a atuação da Fundação Rockefeller, organização de saúde internacional, em pequenos países da América Central e no Caribe, no início do século XX. A edição do livro em português tem novidades como informações sobre a atuação da Fundação Rockefeller no Brasil e um novo capítulo sobre o tratamento com óleo de quenopódio, o que causou muitas mortes, principalmente entre crianças, e as questões éticas decorrentes dessa decisão...

Medicine and public health in Latin America: a history / New approaches to the Americas

All students of Latin American and Caribberan history learn early that disease and suffering, health and medicine, are woven into the main plot lines. This is true from the demographic collapse that decimated indigenous populations during and after the encounter known as the conquest to the shocking health indicators and rural immiseration motivating modernizationists, revolutionists, and neoliberals in the post-World War II era. The social and political consequences of disease and health have been at the center of hemispheric history. Until recently, however, questions of medicine and healing were relagated to the margins of serious discussion among historians. When health and disease were the focus, they were framed by other specialties - the mortality disaster that be fell the Aztec and Inca populations, for example, was an isse identified and debated by geographers and demographers. The specialized historical discussion of medicine, meanwhile, was the preserve of a small and isolated group - mostly retired physicians interested in curiosities of pre-Columbian healing, hagiographic portraits of the great men in their profession, or the charting of the arrival in Latin Amrica of technological breakthroughs made in the metropolitan centers of Europe and the United States. (AU)