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INTRODUCTION: Continuity and coordination-of-care for childhood cancer survivors with multiple chronic conditions are understudied but critical for appropriate follow-up care. METHODS: From April through June 2022, 800 Childhood Cancer Survivor Study participants with two or more chronic conditions (one or more severe/life-threatening/disabling) were emailed the "Patient Perceived Continuity-of-Care from Multiple Clinicians" survey. The survey asked about survivors' main (takes care of most health care) and coordinating (ensures follow-up) provider, produced three care-coordination summary scores (main provider, across multiple providers, patient-provider partnership), and included six discontinuity indicators (e.g., having to organize own care). Discontinuity (yes/no) was defined as poor care on one or more discontinuity item. Chi-square tests assessed associations between discontinuity and sociodemographics. Modified Poisson regression models estimated prevalence ratios (PRs) for discontinuity risk associated with the specialty and number of years seeing the main and coordinating provider, and PRs associated with better scores on the three care-coordination summary measures. Inverse probability weights adjusted for survey non-participation. RESULTS: A total of 377 (47%) survivors responded (mean age 48 years, 68% female, 89% non-Hispanic White, 78% privately insured, 74% ≥college graduate); 147/373 (39%) reported discontinuity. Younger survivors were more likely to report discontinuity (chi-square p = .02). Seeing the main provider ≤3 years was associated with more prevalent discontinuity (PR; 95%CI) (1.17; 1.02-1.34 vs ≥ 10 years). Cancer specialist main providers were associated with less prevalent discontinuity (0.81; 0.66-0.99 vs. primary care). Better scores on all three care-coordination summary measures were associated with less prevalent discontinuity: main provider (0.73; 0.64-0.83), across multiple providers (0.81; 0.78-0.83), patient-provider partnership (0.85; 0.80-0.89). CONCLUSIONS: Care discontinuity among childhood cancer survivors is prevalent and requires intervention.
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Until recently, most syringe services programs (SSPs) in the United States operated in metropolitan areas. This study explores how SSP implementers at rural health departments in Kentucky secured support for SSP operations. In late 2020, we conducted in-depth, semi-structured interviews with 18 people involved with rural SSP implementation in Kentucky. Participants were asked to reflect on their experiences building support for SSP operations among rural health department staff and community members. Participants reported that attitudes and beliefs about SSP implementation among rural health department staff shifted quickly following engagement in educational activities and interaction with SSP clients. Participants explained that successful SSP implementation at rural health departments required sustained educational activities among community members and authorizing authorities. Future work should explore how rural communities may advocate for low-threshold and evidence-based policies that support the provision of harm reduction services.
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A qualitative study was conducted using semi-structured interviews leaders in community-based organizations, health care, and local public health to understand organizational perspectives of collaboration for health equity and identify opportunities to improve collaboration. Twelve leaders were interviewed from March through May 2023 in Kent County, Michigan. All leaders saw collaboration as valuable for advancing health equity. Key themes that affected collaboration and could be a facilitator or barrier to advancing health equity in the community were inclusion, power, relationships, resources, and organizational traits. Leaders articulated the following factors as those that support collaboration for health equity: authentic inclusion, shared decision-making, taking time to foster trusting relationships, adequate resources to support the infrastructure needed for collaborations, organizational flexibility, and individual commitment. Building partnerships with these facilitators in mind may result in more robust, sustainable, and resilient collaboratives.
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BACKGROUND: Survivorship care plans (SCP) should outline pertinent information about cancer treatment and follow-up. METHODS: We descriptively analyzed the content of 74 colorectal cancer SCPs completed as part of a randomized, controlled trial of SCPs at an academic and community cancer center. Surveillance recommendations were compared with American Cancer Society, American Society of Clinical Oncology and National Comprehensive Cancer Network guidelines. RESULTS: SCP information provided in >80% of the plans included participant age, cancer diagnosis, details, and side-effects of treatment (surgery, chemotherapy, radiation) and health promotion recommendations. SCP content documented less frequently included predisposing conditions, genetic counseling/testing information and staging. Posttreatment surveillance recommendations were documented in >90% SCPs. For stage 2-3 cancer, rates of guideline concordant recommendations were 100% for colonoscopy surveillance (Year 1 only), 87% for imaging surveillance, 65% for carcinoembryonic antigen surveillance, and 33% for follow-up visits. Excluding colonoscopy, >15 unique recommendations were listed for each modality across stages and sites, with more variation at the academic site. CONCLUSIONS: SCPs consistently recorded information about cancer diagnosis and treatment but omitted critical information about cancer-specific details denoting risk. Surveillance recommendations varied considerably between cancer centers. Future work to improve the consistency of surveillance recommendations documented in SCPs may be needed.
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Supervivientes de Cáncer/estadística & datos numéricos , Continuidad de la Atención al Paciente/normas , Documentación/estadística & datos numéricos , Neoplasias/terapia , Planificación de Atención al Paciente/normas , Pautas de la Práctica en Medicina/normas , Anciano , Femenino , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Pronóstico , Tasa de Supervivencia , SupervivenciaRESUMEN
PURPOSE: To better understand the impact of cancer and treatment on outcomes and guide program development, we evaluated breast cancer survivors at risk for long-term medical and psychosocial issues who participated in survivorship care visits (SVs) at Johns Hopkins Hospital. METHODS: We conducted a prospective survey study of women with stage I-III breast cancer who participated in SVs from 2010-2016. The same 56-item questionnaire administered at SV and follow-up included an assessment of symptoms, social factors, demographics, anxiety, depression, and comorbidities. We added the Godin Exercise questionnaire to the follow-up. RESULTS: In 2018, 74 participants were identified as disease-free and mailed a follow-up survey; 52 (70.3%) completed the survey. At a median follow-up time of 3.1 years after diagnosis, participants were less likely to be employed (54% vs. 67%) than at the SV. About two-thirds were sedentary, and this was associated with high body mass index (p = 0.02). Sufficiently active participants (≥ 150 min per week of moderate-intensity activity) were less likely to report pain (p = 0.02) or fatigue (p = 0.001). Although 19% had moderate/severe anxiety or depression at follow-up, participants who reported employment satisfaction were less likely to be depressed (p = 0.02). CONCLUSIONS: Awareness of issues faced by survivors is critical for enhancing care and developing models to identify patients who might benefit most from targeted long-term interventions. IMPLICATIONS FOR CANCER SURVIVORS: Interventions to address physical activity, persistent symptoms, and mental health are critical for breast cancer survivors.
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Neoplasias de la Mama , Supervivientes de Cáncer , Neoplasias de la Mama/epidemiología , Neoplasias de la Mama/terapia , Femenino , Humanos , Estudios Prospectivos , Calidad de Vida , SobrevivientesRESUMEN
PURPOSE: PRO-cision medicine refers to personalizing care using patient-reported outcomes (PROs). We developed and feasibility-tested a PRO-cision Medicine remote PRO monitoring intervention designed to identify symptoms and reduce the frequency of routine in-person visits. METHODS: We conducted focus groups and one-on-one interviews with metastatic breast (n = 15) and prostate (n = 15) cancer patients and clinicians (n = 10) to elicit their perspectives on a PRO-cision Medicine intervention's design, value, and concerns. We then feasibility-tested the intervention in 24 patients with metastatic breast cancer over 6-months. We obtained feedback via end-of-study surveys (patients) and interviews (clinicians). RESULTS: Focus group and interview participants reported that remote PRO symptom reporting could alert clinicians to issues and avoid unneeded/unwanted visits. However, some patients did not perceive avoiding visits as beneficial. Clinicians were concerned about workflow. In the feasibility-test, 24/236 screened patients (10%) enrolled. Many patients were already being seen less frequently than monthly (n = 97) or clinicians did not feel comfortable seeing them less frequently than monthly (n = 31). Over the 6-month study, there were 75 total alerts from 392 PRO symptom assessments (average 0.19 alert/assessment). Patients had an average of 4 in-person visits (vs. expected 6.5 without the intervention). Patients (n = 19/24) reported high support on the end-of-study survey, with more than 80% agreeing with positive statements about the intervention. Clinician end-of-study interviews (n = 11/14) suggested that PRO symptom monitoring be added to clinic visits, rather than replacing them, and noted the increasing role of telemedicine. CONCLUSIONS: Future research should explore combining remote PRO symptom monitoring with telemedicine and in-person visits.
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Neoplasias de la Mama , Calidad de Vida , Estudios de Factibilidad , Humanos , Masculino , Medición de Resultados Informados por el Paciente , Calidad de Vida/psicología , Encuestas y CuestionariosRESUMEN
Latinos/as - the largest minority group in the U.S. - are avid Facebook users, making this an opportune tool to educate on the uptake of cancer prevention and screening behaviors. However, there is a dearth in scholarship exploring how Latinos/as engage with and act upon health content encountered on social media, which may be influenced by cultural values. This qualitatively-driven, mixed-methods study explores how Latinos/as engage with and act upon cancer prevention and screening information (CPSI) on Facebook. During one-on-one, in-depth interviews, participants (n = 20) logged onto their Facebook account alongside the researcher and discussed cancer-related posts they engaged with during the past 12 months. Interview questions included the reasons for engagement, and whether engagement triggered further action. Interviews were analyzed thematically. In parallel, a content analysis of the CPSI posts identified during the interviews was conducted. The majority of CPSI posts participants engaged with contained food-related content and visual imagery. Engagement was most common when individuals had personal relationships to the poster, when posts included videos/images, and when posts contained content promoting the curative properties of popular Latin American foods. Engagement often led to information-seeking and sharing, discussing content with others, and/or changing health behaviors. Findings highlight the importance of adequately contextualizing how cultural values influence the ways in which Latinos/as engage with and act upon CPSI on Facebook, which may lead individuals to bypass evidence-based procedures. Multi-pronged efforts are necessary to adequately leverage social media to empower Latinos/as to partake in behaviors that effectively reduce cancer health disparities.
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Hispánicos o Latinos , Neoplasias , Medios de Comunicación Sociales , Comunicación , Hispánicos o Latinos/psicología , Humanos , Neoplasias/etnología , Neoplasias/prevención & control , Medios de Comunicación Sociales/estadística & datos numéricos , Estados UnidosRESUMEN
BACKGROUND: Most of what is known regarding health information engagement on social media stems from quantitative methodologies. Public health literature often quantifies engagement by measuring likes, comments, and/or shares of posts within health organizations' Facebook pages. However, this content may not represent the health information (and misinformation) generally available to and consumed by platform users. Furthermore, some individuals may prefer to engage with information without leaving quantifiable digital traces. Mixed methods approaches may provide a way of surpassing the constraints of assessing engagement with health information by using only currently available social media metrics. OBJECTIVE: This study aims to discuss the limitations of current approaches in assessing health information engagement on Facebook and presents the social media content and context elicitation method, a qualitatively driven, mixed methods approach to understanding engagement with health information and how engagement may lead to subsequent actions. METHODS: Data collection, management, and analysis using the social media content and context elicitation method are presented. This method was developed for a broader study exploring how and why US Latinos and Latinas engage with cancer prevention and screening information on Facebook. The study included 20 participants aged between 40 and 75 years without cancer who participated in semistructured, in-depth interviews to discuss their Facebook use and engagement with cancer information on the platform. Participants accessed their Facebook account alongside the researcher, typed cancer in the search bar, and discussed cancer-related posts they engaged with during the previous 12 months. Engagement was defined as liking, commenting, and/or sharing a post; clicking on a post link; reading an article in a post; and/or watching a video within a post. Content engagement prompted questions regarding the reasons for engagement and whether engagement triggered further action. Data were managed using MAXQDA (VERBI GmbH) and analyzed using thematic and content analyses. RESULTS: Data emerging from the social media content and context elicitation method demonstrated that participants mainly engaged with cancer prevention and screening information by viewing and/or reading content (48/66, 73%) without liking, commenting, or sharing it. This method provided rich content regarding how US Latinos and Latinas engage with and act upon cancer prevention and screening information on Facebook. We present 2 emblematic cases from the main study to exemplify the additional information and context elicited from this methodology, which is currently lacking from quantitative approaches. CONCLUSIONS: The social media content and context elicitation method allows a better representation and deeper contextualization of how people engage with and act upon health information and misinformation encountered on social media. This method may be applied to future studies regarding how to best communicate health information on social media, including how these affect assessments of message credibility and accuracy, which can influence health outcomes.
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Medios de Comunicación Sociales , Adulto , Anciano , Comunicación , Emociones , Humanos , Persona de Mediana Edad , Salud Pública , Proyectos de InvestigaciónRESUMEN
BACKGROUND: The coronavirus pandemic (COVID-19) exacerbated risks for adverse health consequences among people who inject drugs by reducing access to sterile injection equipment, HIV testing, and syringe services programs (SSPs). Several decades of research demonstrate the public health benefits of SSP implementation; however, existing evidence primarily reflects studies conducted in metropolitan areas and before the COVID-19 pandemic. OBJECTIVES: We aim to explore how the COVID-19 pandemic affected SSP operations in rural Kentucky counties. METHODS: In late 2020, we conducted eighteen in-depth, semi-structured interviews with persons (10 women, 8 men) involved in SSP implementation in rural Kentucky counties. The interview guide broadly explored the barriers and facilitators to SSP implementation in rural communities; participants were also asked to describe how COVID-19 affected SSP operations. RESULTS: Participants emphasized the need to continue providing SSP-related services throughout the pandemic. COVID-19 mitigation strategies (e.g., masking, social distancing, pre-packing sterile injection equipment) limited relationship building between staff and clients and, more broadly, the pandemic adversely affected overall program expansion, momentum building, and coalition building. However, participants offered multiple examples of innovative solutions to the myriad of obstacles the pandemic presented. CONCLUSION: The COVID-19 pandemic impacted SSP operations throughout rural Kentucky. Despite challenges, participants reported that providing SSP services remained paramount. Diverse adaptative strategies were employed to ensure continuation of essential SSP services, demonstrating the commitment and ingenuity of program staff. Given that SSPs are essential for preventing adverse injection drug use-associated health consequences, further resources should be invested in SSP operations to ensure service delivery is not negatively affected by co-occurring crises.
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COVID-19 , Abuso de Sustancias por Vía Intravenosa , Femenino , Humanos , Kentucky/epidemiología , Masculino , Programas de Intercambio de Agujas , Pandemias/prevención & control , Población Rural , Abuso de Sustancias por Vía Intravenosa/epidemiología , JeringasRESUMEN
In January 2019, revisions to federal regulations that outline requirements for ethical oversight of human subjects research (The Revised Common Rule) went into effect. These revisions reflect major changes in thinking about risk and protection of research subjects. The Revised Common Rule (RCR) considerably curtails federal oversight of social and behavioral science, with most non-interventional research and "benign" behavioral interventions becoming exempt from mandated Institutional Review Board (IRB) approval, although determination of exemption remains with IRBs. As two qualitative health researchers serving on IRBs, we consider how this contraction of federal oversight dovetails with longstanding criticisms of IRB oversight of qualitative research. We explore the passage of the RCR as a point of potentially important change in procedure and principle in relation to ethical oversight of qualitative health research. We identify challenges and opportunities with these changes at the institutional, professional, and individual levels for ethical and impactful qualitative research.
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Investigación Biomédica , Comités de Ética en Investigación , Humanos , Investigación Cualitativa , Investigadores , Sujetos de InvestigaciónRESUMEN
BACKGROUND: Survivorship care plans contain important information for patients and primary care physicians regarding appropriate care for cancer survivors after treatment. We describe the completeness of prostate cancer survivorship care plans and evaluate the concordance of follow-up recommendations with guidelines. METHODS: We analyzed 119 prostate cancer survivorship care plans from one academic and one community cancer center, abstracting demographics, cancer/treatment details, and follow-up recommendations. Follow-up recommendations were compared with the American Cancer Society (ACS), American Society of Clinical Oncology (ASCO), and National Comprehensive Cancer Network (NCCN) guidelines. RESULTS: Content in >90% of plans included cancer TNM stage; prostate-specific antigen (PSA) at diagnosis; radiation treatment details (98% of men received radiation); and PSA monitoring recommendations. Potential treatment-specific side effects were listed for 82% of men who had surgery, 86% who received androgen deprivation therapy (ADT), and 97% who underwent radiation. The presence of posttreatment symptoms was noted in 71% of plans. Regarding surveillance follow-up, all guidelines recommend an annual digital rectal exam (DRE). No plans specified DRE. However, all 71 plans at the community site recommended at least annual follow-up visits with urology, radiation oncology, and primary care. Only 2/48 plans at the academic site specified follow-up visits. All guidelines recommend PSA testing every 6-12 months for 5 years, then annually. For the first 5 years, 90% of plans were guideline-concordant, 8% suggested oversurveillance, and 2% were incomplete. In men receiving ADT, ACS and ASCO recommend bone density imaging and NCCN recommends testosterone levels. Of 77 men on ADT, 1% were recommended bone density imaging and 16% testosterone level testing. CONCLUSIONS: While care plan content is more complete for demographic and treatment summary information, both sites had gaps in reporting posttreatment symptoms and ADT-related testing recommendations. These findings highlight the need to improve the quality of information in care plans, which are important in communicating appropriate follow-up recommendations to patients and primary care physicians.
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Antagonistas de Receptores Androgénicos/uso terapéutico , Neoplasias de la Próstata/terapia , Supervivencia , Anciano , Anciano de 80 o más Años , Humanos , Masculino , Persona de Mediana Edad , Neoplasias de la Próstata/tratamiento farmacológico , Neoplasias de la Próstata/radioterapia , Neoplasias de la Próstata/cirugíaRESUMEN
INTRODUCTION: Flavors and depictions of flavors are attractive and facilitate initiation and use of tobacco products. However, little is known about the types of flavored products on the market, particularly in low- and middle-income countries. We describe the nature and extent of flavored cigarettes sold in nine low- and middle-income countries from four of the six World Health Organization (WHO) regions. AIMS AND METHODS: We employed a systematic protocol to purchase unique cigarette packs in Bangladesh, Brazil, China, India, Indonesia, Philippines, Russia, Thailand, and Vietnam. Packs were double coded for flavor descriptors and imagery using a standard codebook. Frequencies and crosstabs were conducted to examine the proportion of packs with flavor descriptors and/or flavor imagery, and flavor capsules, by country and by major manufacturer. RESULTS: Overall, 15.4% of the country-unique cigarette packs had flavor descriptors and/or imagery, representing a variety of flavors: menthol or mint (8.2%), "concept" descriptors (3.5%) (eg, Fusion blast), fruit or citrus (3.3%), beverages (1.4%), and others (1.4%). Flavor was mostly communicated using descriptors (15.2%), with flavor imagery being less common (2.2%). Flavor capsules were prevalent (6.2%), with almost half having "concept" descriptors. All major tobacco companies produced cigarettes with flavors, and with capsules. CONCLUSIONS: A range of flavored cigarettes remain on the market in the low- and middle-income countries with the greatest number of smokers. This finding is particularly concerning given the appeal of flavored cigarettes among youth and their potential to circumvent country bans on flavored tobacco products if those laws are not sufficiently comprehensive. Laws addressing flavored tobacco products need to account for flavor capsules and concept descriptors. IMPLICATIONS: While a number of countries have restricted flavors in tobacco products to reduce their appeal and attractiveness, a range of flavors continue to be on the market in low- and middle-income countries, putting people in these countries at increased risk for tobacco use and subsequent tobacco-caused death and disease. The presence of capsules and concept descriptors is particularly concerning given their appeal among youth and their potential to circumvent country bans on flavored tobacco products if those laws are not sufficiently comprehensive.
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Sistemas Electrónicos de Liberación de Nicotina , Productos de Tabaco , Adolescente , Países en Desarrollo , Aromatizantes , Humanos , FumadoresRESUMEN
PURPOSE: Survivorship care plans (SCPs) provide key information about cancer treatment history and follow-up recommendations. We describe the completeness of breast cancer SCPs and evaluate guideline concordance of follow-up recommendations. METHODS: We analyzed 149 breast cancer SCPs from two sites, abstracting demographics, cancer/treatment details, surveillance plans, and health promotion advice. SCP recommendations and provided information were compared to American Cancer Society/American Society of Clinical Oncology and National Comprehensive Cancer Network guidelines. RESULTS: SCP information provided in > 90% of the plans included patient age; relevant providers; cancer stage; treatment details; and physical exam, mammogram, and health promotion recommendations. SCP components completed less frequently included post-treatment symptoms/side effects (67%). All SCPs at the community site were uniform but had the potential for oversurveillance if visits occurred every 3 months in years 1-2 or every 6 months in years 3-5 with multiple cancer providers. The academic site recommended three predominant patterns of follow-up: (1) primary care provider every 6-12 months; (2) cancer team every 3-6 months (year 1), every 6-12 months (years 4-5); and (3) alternating oncology providers every 3-6 months (years 1-2) then every 6 months. Compared to guidelines, these patterns recommend under- and oversurveillance at various times. Mammography recommendations showed guideline concordance (annual) for 84%, oversurveillance for 10%, and were incomplete for 6%. SCPs of only 12/79 (15%) women on aromatase inhibitors recommended guideline-concordant bone density testing. CONCLUSIONS: SCP content is more complete for demographic and treatment summary information but has follow-up recommendation gaps. Efforts to improve follow-up recommendations are needed.
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Neoplasias de la Mama/epidemiología , Supervivientes de Cáncer , Atención a la Salud , Supervivencia , Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/terapia , Atención a la Salud/métodos , Atención a la Salud/normas , Femenino , Promoción de la Salud , Humanos , Estadificación de Neoplasias , Guías de Práctica Clínica como AsuntoRESUMEN
The opioid crisis has increased risks for injection drug use-associated HIV outbreaks in rural communities throughout the United States. Existing research has examined pre-exposure prophylaxis (PrEP) utilization among people who inject drugs (PWID); however, no studies have been conducted to explore barriers and facilitators of PrEP use among rural PWID in Appalachia. We conducted qualitative interviews with PWID (n = 48) in two rural counties in West Virginia to explore barriers and facilitators of PrEP use. Among our participants, the majority (68.8%) had never heard of PrEP. Upon learning about PrEP, most participants expressed willingness to use it. Rural PWID described several factors that may impede PrEP utilization (e.g., housing instability, forgetting to take PrEP). Participants also identified practical strategies to support sustained PrEP utilization, such as integrating PrEP services into venues PWID access. This research provides important insights into the barriers and facilitators of PrEP utilization among rural PWID.
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Fármacos Anti-VIH , Infecciones por VIH , Profilaxis Pre-Exposición , Abuso de Sustancias por Vía Intravenosa , Adulto , Fármacos Anti-VIH/uso terapéutico , Región de los Apalaches/epidemiología , Femenino , Infecciones por VIH/tratamiento farmacológico , Infecciones por VIH/epidemiología , Infecciones por VIH/prevención & control , Humanos , Masculino , Persona de Mediana Edad , Población Rural , Abuso de Sustancias por Vía Intravenosa/tratamiento farmacológico , Abuso de Sustancias por Vía Intravenosa/epidemiologíaRESUMEN
PURPOSE: Breast cancer survivors face numerous challenges after diagnosis and treatment. Several models have been developed to attempt to improve quality of care. Here, we describe characteristics and outcomes of patients who participated in survivorship visits (SV) at Johns Hopkins (JH). METHODS: We retrospectively reviewed charts of breast cancer patients who participated in an optional SV 1-3 months after completing locoregional therapy and initial systemic therapy. We report patient demographics, comorbidities, tumor characteristics, treatments, and responses to symptom questionnaires. We compared the characteristics of SV participants to stage I-III analytical cases in the 2010-2015 JH Cancer Registry (JHCR). RESULTS: We identified 87 women with stage I-III breast cancer who participated in SVs from 2010 to 2016. Compared to patients in the JHCR (n = 2942), SV participants were younger, more likely to be African American and more likely to have a higher TNM stage, hormone receptor-negative disease, and HER2-positive disease. They were more likely to have received chemotherapy and radiation therapy. They also have similar recurrence rates despite the SV cohort's shorter median follow-up time. Among SV participants, the prevalence of comorbidities including peripheral neuropathy, anemia, lymphedema, anxiety, deep vein thrombosis, and depression increased significantly from time of diagnosis to most recent follow-up. CONCLUSIONS: Compared to the JHCR cohort, SV participants had higher risk cancers and a high frequency of comorbidities potentially associated with breast cancer and therapy. These high-risk patients may benefit most from specific interventions targeting survivorship care, and their experiences may help improve care delivery models.
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Atención Ambulatoria , Neoplasias de la Mama/epidemiología , Supervivientes de Cáncer , Factores de Riesgo , Supervivencia , Adulto , Anciano , Anciano de 80 o más Años , Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/terapia , Comorbilidad , Femenino , Humanos , Persona de Mediana Edad , Metástasis de la Neoplasia , Estadificación de Neoplasias , Vigilancia en Salud Pública , Sistema de Registros , Estudios Retrospectivos , Adulto JovenRESUMEN
This study explored patients' experiences and perceptions of living with thalassemia (an inherited hematologic disorder), perceptions of social stigma, and impact on disclosure decision-making. Semistructured, in-person interviews were conducted in Singapore with 30 individuals: 16 thalassemia major patients and 14 parents of children with thalassemia. Findings were indicative of felt or enacted stigma that may have influenced disclosure decisions. Although affected individuals commonly disclosed their thalassemia diagnosis to family members, they either downplayed the condition with or avoided disclosure to unrelated individuals. Disclosure outside the family occurred only in response to triggers, such as questions about absences due to medical care. Health professionals should provide anticipatory guidance about disclosure strategies when managing individuals with thalassemia.
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Necesidades y Demandas de Servicios de Salud , Revelación de la Verdad , Talasemia beta/epidemiología , Adolescente , Adulto , Estudios Transversales , Toma de Decisiones , Manejo de la Enfermedad , Femenino , Humanos , Masculino , Investigación Cualitativa , Singapur/epidemiología , Cambio Social , Adulto JovenRESUMEN
BACKGROUND: Medical Visit Companions (MVCs) are encouraged for older adults' routine medical encounters. Little data exist on the experiences and contributions of non-spouse companions for the growing population of older adults without a living spouse. METHODS: We conducted six focus groups with forty non-spouse MVCs identified through churches in Baltimore, Maryland. Thematic analysis was used to identify key issues before the visit, during the visit itself, after the visit, and in the overall companion experience. RESULTS: MVCs described their experiences positively but also highlighted many challenges related to the role that extended far beyond the visit itself. These included scheduling, transportation, communication, and coordination of care expectations. CONCLUSION: Our increasingly complex healthcare system can be challenging for older adults to navigate successfully. The diverse nature of tasks performed by companions in this study highlight the many benefits of having a companion accompany older patients to medical visits. The positive experience of the companions studied and their willingness to continue their role in the future highlights the untapped potential for increased social facilitation to improve the quality of healthcare visits and achieve patient-centered care for all older patients.
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Grupos Focales/métodos , Amigos/psicología , Visita a Consultorio Médico , Atención Dirigida al Paciente/métodos , Relaciones Profesional-Familia , Investigación Cualitativa , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Maryland/epidemiología , Persona de Mediana Edad , Relaciones Médico-Paciente , EspososRESUMEN
BACKGROUND: Opioid-related injuries and deaths continue to present challenges for public health practitioners. Prescription Drug Monitoring Programs (PDMPs) are a prevalent policy option intended to address problematic opioid pain reliever (OPR) prescribing, but previous research has not thoroughly characterized their unintended consequences. OBJECTIVES: To examine state actors' perceptions of the unintended consequences of PDMPs. METHODS: We conducted 37 interviews with PDMP staff, law enforcement officials, and administrative agency employees in Florida, Kentucky, New Jersey, and Ohio from May 2015 to June 2016. RESULTS: We identified six themes from the interviews. Perceived negative unintended consequences included: access barriers for those with medical needs, heroin use as OPR substitute and related deaths, and need for adequate PDMP security infrastructure and management. Perceived positive unintended consequences were: community formation and problem awareness, proactive population-level OPR monitoring, and increased knowledge about population-level drug diversion. Conclusions/Importance: State actors perceive a range of both negative and positive unintended consequences of PDMPs. Our findings suggest that there may be unintended risks of PDMPs that states should address, but also opportunities to maximize certain benefits.
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Analgésicos Opioides , Accesibilidad a los Servicios de Salud , Dependencia de Heroína , Programas de Monitoreo de Medicamentos Recetados , Concienciación , Florida , Humanos , Kentucky , Aplicación de la Ley , New Jersey , Ohio , Investigación CualitativaRESUMEN
OBJECTIVE: Cognitive impairment poses communication challenges in primary care. Although family "companions" commonly attend primary care visits of older adults with cognitive impairment, little is known about how their involvement affects communication. Therefore, we sought to understand how companion involvement affects the quality of primary care visit communication for older adults with cognitive impairment. METHODS: Cross-sectional, descriptive qualitative study participants were as follows: (1) English-speaking adults age 65 or older with mild, moderate, or severe cognitive impairment; (2) family members or other unpaid companions who accompany older adults to primary care visits; and (3) primary care clinicians. Twenty semi-structured and in-depth qualitative interviews of older adults and their companions (N = 20 dyads) and two focus groups (N = 10 primary care clinicians) were conducted. Interviews and focus groups were transcribed and analyzed thematically. RESULTS: Family companions commonly facilitate communication by advocating for patients, ensuring the accuracy of information exchange and understanding, and preserving rapport. Significant communication challenges were also identified, including patient and companion role ambiguity, competing visit agendas, and primary care clinician confusion regarding the most accurate source of information. Patients, companions, and clinicians each identified strategies to improve communication, chief among them being to identify, differentiate, and respect both patient and companion priorities and perspectives. CONCLUSIONS: Family companions actively participate in primary care visits of older adults with cognitive impairment in ways that promote and inhibit effective communication. Findings suggest the need for strategies that more effectively and purposefully involve family in the care of primary care patients with cognitive impairment. Copyright © 2017 John Wiley & Sons, Ltd.
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Toma de Decisiones Clínicas , Trastornos del Conocimiento/terapia , Comunicación , Familia , Atención Primaria de Salud , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Familia/psicología , Femenino , Grupos Focales , Humanos , Masculino , Chaperones Médicos , Persona de Mediana Edad , Relaciones Profesional-Familia , Investigación CualitativaRESUMEN
Evidence suggests that men with recent histories of incarceration are more likely to engage in high-risk sexual activity, however there is limited research exploring how having been recently released from prison might impact men's sexual risk behaviours or sexual partnering. This qualitative study explores the ways in which exposure to incarceration impacts the dynamics of sexual partnering among recently released Black men in Baltimore, USA. In-depth interviews were conducted with 19 recently released Black men between 21-45 years of age living in the city. Data were analysed using a combination of inductive and deductive approaches. Participants reported that women living in the neighbourhoods to which they returned found recently released men to be highly desirable sexual partners because they offered increased potential for sexual gratification, were perceived as healthier than other sexual partners in their communities and represented opportunities for attaining financial stability and the potential for establishing romantic partnerships. As a result, men reported they had more opportunities for sex and more power to negotiate sex with women. Recently released Black men's perceptions of their own sexual desirability among women raise important implications regarding power in the sexual relationships of recently released men that may increase HIV- and sexually transmitted infection-related risk for recently released men and their sexual partners.