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PURPOSE: This study describes financial toxicity (FT) reported by people with metastatic cancer, characteristics associated with FT, and associations between FT and compensatory strategies to offset costs. METHODS: Cancer Support Community's Cancer Experience Registry data was used to identify respondents with a solid tumor metastatic cancer who completed the Functional Assessment of Chronic Illness Therapy COmprehensive Score for Financial Toxicity (FACIT-COST) measure. Multivariable logistic regression analyses examined associations between respondent characteristics and FT, and FT and postponing medical visits, nonadherence to medications, and postponing supportive and/or psychosocial care. RESULTS: 484 individuals were included in the analysis; the most common cancers included metastatic breast (31%), lung (13%), gynecologic (10%), and colorectal (9%). Approximately half of participants (50.2%) reported some degree of FT. Those who were non-Hispanic White, Hispanic, or multiple races (compared to non-Hispanic Black), and who reported lower income, less education, and being less than one year since their cancer diagnosis had greater odds of reporting FT. Individuals with any level of FT were also more likely to report postponing medical visits (Adjusted Odds Ratio [OR] 2.58; 95% Confidence Interval [CI] 1.45-4.58), suboptimal medication adherence (Adjusted OR 5.05; 95% CI 2.77-9.20) and postponing supportive care and/or psychosocial support services (Adjusted OR 4.16; 95% CI 2.53-6.85) compared to those without FT. CONCLUSIONS: With increases in the number of people living longer with metastatic cancer and the rising costs of therapy, there will continue to be a need to systematically screen and intervene to prevent and mitigate FT for these survivors.
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Segunda Neoplasia Primária , Neoplasias , Humanos , Feminino , Efeitos Psicossociais da Doença , Estresse Financeiro , Gastos em Saúde , Neoplasias/terapia , Sistema de RegistrosRESUMO
PURPOSE: People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared to those with early-stage disease or those nearing the end-of-life. These MASCC-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. METHODS: An expert panel comprising MASCC and ASCO members was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting: (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process. RESULTS: A systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including 8 people with lived experience) across 33 countries (33% were low-to-middle resource countries) participated in the Delphi study and achieved ≥ 94.8% agreement for seven standards (1. Person-Centred Care; 2. Coordinated and Integrated Care; 3. Evidence-Based and Comprehensive Care; 4. Evaluated and Communicated Care; 5. Accessible and Equitable Care; 6. Sustainable and Resourced Care; 7. Research and Data-Driven Care) and ≥ 84.2% agreement across 45 practice recommendations. CONCLUSION: Standards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards will support optimization of health outcomes and care experiences by providing guidance to stakeholders in cancer care (healthcare professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers. Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.
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Sobreviventes de Câncer , Neoplasias , Cuidados Paliativos , Sobrevivência , Humanos , Técnica Delphi , Metástase Neoplásica , Neoplasias/terapia , Cuidados Paliativos/normas , Cuidados Paliativos/métodos , Assistência Centrada no Paciente/normas , Assistência Centrada no Paciente/organização & administração , Guias de Prática Clínica como Assunto , Qualidade da Assistência à Saúde/normasRESUMO
OBJECTIVE: To examine the association between rehabilitation utilization within 12 months of breast cancer diagnosis and out-of-pocket costs in the second year (12 - 24 months following diagnosis). DESIGN: Secondary analysis of the 2009-2019 Surveillance, Epidemiology and End Results-Medicare linked database. Individuals who received rehabilitation services were propensity-score matched to individuals who did not receive services. Overall and health care service-specific models were examined using generalized linear models with a gamma distribution. SETTING: Inpatient and outpatient medical facilities in the United States PARTICIPANTS: : 35,212 individuals diagnosed with non-metastatic breast cancer and were continuously enrolled in Medicare Fee-For Service (parts A, B, and D) in the 12 months prior to and 24 months post- diagnosis. INTERVENTION: Not applicable MAIN OUTCOME MEASURES: : Individual cost responsibility, a proxy for out-of-pocket costs, which was defined as deductibles, coinsurance, and copayments during the second year following diagnosis (12 - 24 months post- diagnosis). RESULTS: The mean individual cost responsibility was higher in individuals who utilized rehabilitation compared to those who did not ($4,013 vs. $3,783), although it was not a clinically meaningful difference (d=0.06). Individuals who received rehabilitative services had significantly higher costs attributed to individual provider care ($1,634 vs. $1,476), institutional outpatient costs ($886 vs. $812), and prescription drugs ($959 vs. $906), and significantly lower costs attributed to institutional inpatient costs ($455 vs. $504), and durable medical equipment ($81 vs. $86). CONCLUSIONS: Older adults with breast cancer who received rehabilitation services had higher cost responsibility during the second year following diagnosis compared to those who did not. Future work is needed to examine the relationship between rehabilitation and out-of-pocket costs across longer periods of time and in conjunction with perceived benefit.
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PURPOSE: The incidence of colorectal cancer (CRC) is rising in people under age 50 (early-onset). Early-onset survivors face CRC during a critical point in their lives; many are establishing their families and careers. We sought to identify the unmet needs in a sample of early-onset CRC survivors and the resources they desired to address those needs. METHODS: We conducted a mixed methods study where participants completed the Cancer Survivors Unmet Needs (CaSUN) survey and a subsequent qualitative interview to expand on their unmet needs and desired resources. RESULTS: A total of 12 CRC survivors participated and 83% identified at least one unmet need, with an average of 13 unmet needs reported. Unmet needs were identified across every domain of the CaSUN measure, most commonly in the existential survivorship domain. Qualitative results demonstrated that survivors need more resources tailored for people their age and additional support for their families, including young children. CONCLUSION: Early-onset CRC survivors' needs are framed by the stage of their lives in which they are diagnosed, and the demand for interventions to support these survivors will continue to rise. The results of this study can inform future, tailored interventions for early-onset CRC survivors with substantial needs.
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Sobreviventes de Câncer , Neoplasias Colorretais , Criança , Humanos , Pré-Escolar , Pessoa de Meia-Idade , Qualidade de Vida , Necessidades e Demandas de Serviços de Saúde , Sobreviventes , Inquéritos e Questionários , Neoplasias Colorretais/epidemiologiaRESUMO
The benefits of cancer information-seeking may be particularly salient to individuals impacted by childhood cancer, including patients, caregivers, health professionals, and advocates. The purpose of this study was to explore information-seeking patterns for childhood cancer through the National Cancer Institute's Cancer Information Service (CIS), a multi-channel, bilingual resource for cancer information. The study team conducted descriptive analyses on secondary data characterizing 1820 caregivers, health professionals, organizations, and members of the general public who contacted the CIS about childhood cancer between September 2018 and June 2022. Almost 80% of inquiries about childhood cancer were initiated by caregivers, followed by the public, health professionals, and organizations. Although English was the primary language used by individuals to reach the CIS when discussing childhood cancer, there were variations in points of access (i.e., telephone, instant messaging, email, social media) across the four user groups. Most childhood cancer inquiries were about staging and treatment, and the primary cancer sites discussed by CIS users were neurologic or brain, hematologic, and musculoskeletal cancers. Discussion topics included managing and coping with cancer, clinical trials, and treatment side effects. Just over half (54%) of CIS contacts about childhood cancer resulted in a health professional referral. Findings provide direction for the CIS and other public health organizations to deliver, prioritize, and tailor their services to support the information needs of childhood cancer survivors and their families-as well as those who care and advocate for them-who may have a significant need for credible cancer information.
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Comportamento de Busca de Informação , Neoplasias , Criança , Estados Unidos , Humanos , National Cancer Institute (U.S.) , Neoplasias/terapia , Serviços de Informação , Pessoal de SaúdeRESUMO
BACKGROUND: Gathering information directly from cancer survivors has advanced our understanding of the cancer survivorship experience. However, it is unknown whether surveys can distinguish important subgroups of cancer survivors. This study aimed to describe the current landscape of survey questions used to identify and describe cancer survivors in national cross-sectional studies. METHODS: Using publicly available databases, the authors identified national cross-sectional surveys used in the United States within the past 15 years that included a question on self-reported history of cancer. After abstracting questions and response items used to identify cancer survivors, they conducted a descriptive analysis. RESULTS: The authors identified 14 national cross-sectional surveys, with half administered to the general population and the other half administered to cancer survivors. The most common question used to identify cancer survivors was "Have you ever been told by a doctor or other health professional that you had cancer?" Most surveys had questions asking participants to identify a single cancer type (n = 11), multiple prior cancer diagnoses or types (n = 11), and the time from diagnosis (n = 12). Treatment questions varied from active treatment status to specific treatments received. Questions addressing cancer stage (n = 2), subtypes (n = 1), metastatic status (n = 3), and recurrence (n = 4) were less frequently included. CONCLUSIONS: There is no standard method for assessing self-reported cancer history, and this limits the ability to distinguish among potentially important subgroups of survivors. Future cross-sectional surveys that capture nuanced data elements, such as cancer types, stages/subtypes, metastatic/recurrent status, and treatments received, can help to fill important gaps in cancer survivorship research and clinical care.
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Sobreviventes de Câncer , Neoplasias , Estudos Transversais , Humanos , Neoplasias/epidemiologia , Neoplasias/terapia , Inquéritos e Questionários , Sobreviventes , Estados Unidos/epidemiologiaRESUMO
PURPOSE: To determine whether military men report different prostate-specific antigen (PSA) screening rates than civilian men and if shared decision-making (SDM) is associated with PSA screening. METHODS: We used data from the 2018 Behavioral Risk Factor Surveillance System and included 101,901 men (26,363 military and 75,538 civilian men) in the analysis conducted in 2021. We conducted binomial logistic regression analyses to determine covariate-adjusted associations between military status and receiving a PSA test in the last 2 years. We then added patient reports of SDM to the model. Finally, we looked at the joint effects of military status and SDM on the receipt of a PSA test in the last 2 years. RESULTS: Military men had 1.1 times the odds of PSA testing compared to civilian men (95% CI 1.1, 1.2) after adjusting for SDM and sociodemographic and health covariates. When examining the joint effect of military status and SDM, military and civilian men had over three times the odds of receiving a PSA test in the last 2 years if they had reported SDM (OR 3.5 and OR 3.4, respectively) compared to civilian men who did not experience SDM. CONCLUSION: Military men are slightly more likely to report receiving a PSA test in the last 2 years compared to civilian men. Additionally, results show SDM plays a role in the receipt of a PSA test in both populations. These findings can serve as a foundation for tailored interventions to promote appropriate SDM for PSA screening in civilian, active duty, and veteran healthcare systems.
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Militares , Neoplasias da Próstata , Sistema de Vigilância de Fator de Risco Comportamental , Tomada de Decisões , Detecção Precoce de Câncer , Humanos , Masculino , Programas de Rastreamento , Antígeno Prostático Específico , Neoplasias da Próstata/diagnóstico , Neoplasias da Próstata/epidemiologiaRESUMO
OBJECTIVE: We sought to understand whether people with cancer who received mental health services reported different care experiences than those who did not. METHODS: We used Surveillance, Epidemiology, and End Results (SEER)-Consumer Assessment of Health Providers and Systems (CAHPS) linked data to identify Medicare beneficiaries aged 66 and over diagnosed with solid tumor malignancies between 8/2006 and 12/2013. We identified mental health services using claims spanning 12 months before cancer diagnosis through up to 5 years afterward. Outcomes were care experience ratings (e.g., Overall Care) and composite measures (e.g., Doctor Communication). We estimated frequentist and Bayesian regression models adjusted for standard confounders, including sociodemographics, general and mental health status (MHS), and other characteristics. Models included interaction terms to understand whether mental healthcare changes self-reported experiences for individuals with adverse MHS. RESULTS: Approximately 22% (n = 4998 individuals with cancer) had a mental health disorder claim; 17% of these reported fair/poor MHS versus only 7% of those in the cancer-only cohort (without a mental health disorder claim). Before adjusting for mental healthcare utilization and case-mix, worse MHS was associated with worse care experiences (p < 0.001 for all six measures). After accounting for mental health disorder-related healthcare utilization and case mix, multivariable regression models showed no associations between MHS and worse care experiences. CONCLUSIONS: Care for mental health disorders mediates the association between MHS and perceived care experiences. The results suggest that mental health treatment may improve the self-reported experiences of care for older adults with cancer and adverse mental health issues.
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Medicare , Neoplasias , Idoso , Teorema de Bayes , Humanos , Saúde Mental , Neoplasias/terapia , Satisfação do Paciente , Estados Unidos/epidemiologiaRESUMO
PURPOSE: Cancer patients' care experiences encompass the range of interactions with the health care system and are an important indicator of care quality, which may influence survival outcomes. This study evaluates relationships between care experiences and survival using a large, nationally representative sample of cancer patients. METHODS: We used linked SEER (Surveillance Epidemiology and End Results)-CAHPS (Consumer Assessment of Healthcare Providers and Systems) data to identify people diagnosed 8/2006-12/2013, focusing on 10 solid tumor cancer sites with the highest mortality rates among those > 65. CAHPS measures included 5 global ratings and 3 composite scores. We used survey-weighted Cox proportional hazard models comparing survival time for those who had lower (0-8) vs higher ratings (9-10) and lower (0-89) vs higher (90-100) composite scores, adjusting for case-mix and additional covariates. RESULTS: We identified 2,263 eligible people; 26% died by 5-year post-survey completion or end of follow-up (12/31/2017). We found lower Prescription Drug Plan (PDP) ratings were significantly associated with lower mortality (adjusted HR = 0.67, p = 0.03). Lower Getting Needed Care scores were also significantly associated with lower mortality (adjusted HR = 0.79, p = 0.04). For other care experience measures, general health status, cancer stage, and comorbidities were more predictive of survival (p < .05). CONCLUSIONS: Except for PDP and Getting Needed Care, survival was similar for those with worse versus better care experiences. Patients with poorer cancer prognoses may perceive better services from their drug plan and more responsive care from clinical providers compared to those with better prognoses. Further research is needed examining processes underlying perceptions of care experiences and survival.
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Neoplasias , Satisfação do Paciente , Idoso , Feminino , Humanos , Medicare , Neoplasias/epidemiologia , Neoplasias/terapia , Qualidade da Assistência à Saúde , Inquéritos e Questionários , Estados Unidos/epidemiologiaRESUMO
Seeking cancer information is recognized as an important, life-saving behavior under normal circumstances. However, given the significant impact of COVID-19 on society, the healthcare system, and individuals and their families, it is important to understand how the pandemic has affected cancer information needs in a crisis context and, in turn, how public health agencies have responded to meeting the information needs of various audiences. Using data from the National Cancer Institute's Cancer Information Service (CIS) - a long-standing, multi-channel resource for trusted cancer information in English and Spanish - this descriptive analysis explored differences in cancer information-seeking among cancer survivors, caregivers, tobacco users, and members of the general public during the onset and continuation of the COVID-19 pandemic (February - September 2020), specifically comparing interactions that involved a discussion of COVID-19 to those that did not. During the study period, COVID-19 discussions were more likely to involve survivors or caregivers compared to tobacco users and the general public. Specific patterns emerged across the four user types and their respective discussions of COVID-19 related to language of service, point of CIS access, stage on the cancer continuum, subject of interaction, cancer site discussed, and referrals provided by the CIS. These results provide insights that may help public health agencies deliver, prioritize, and tailor their messaging and response to specific audiences based on heightened health information needs during a crisis.
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COVID-19/epidemiologia , Informação de Saúde ao Consumidor/estatística & dados numéricos , Comportamento de Busca de Informação , National Cancer Institute (U.S.)/estatística & dados numéricos , Neoplasias/epidemiologia , Sobreviventes de Câncer/estatística & dados numéricos , Cuidadores/estatística & dados numéricos , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Idioma , Estadiamento de Neoplasias , Pandemias , Encaminhamento e Consulta/estatística & dados numéricos , SARS-CoV-2 , Fumantes/estatística & dados numéricos , Estados Unidos/epidemiologiaRESUMO
Precision medicine using multi-marker tumor panel (MMTP) testing can help inform cancer treatment decisions. Oncologists' knowledge of these tests and their ability to find up-to-date information about their application in clinical care is essential. This study aimed to (1) describe information sources used by oncologists to learn about new genomic tests and (2) examine characteristics associated with the use of each information source. The National Cancer Institute's National Survey of Precision Medicine in Cancer Treatment surveyed a nationally representative sample of oncologists about MMTP testing. We examined the use of 11 information sources among oncologists that reported using MMTP tests (n = 1222). Bivariate analyses were used to examine whether information sources differed by oncologist- and practice-level characteristics and type of MMTP test. Most oncologists reported using peer-reviewed medical literature (88.8%), scientific conferences (87.9%), and medical professional societies (83.8%) to learn about MMTPs. In contrast, government websites, FDA inserts, and foundation resources were each used by < 36% of oncologists. The use of information sources differed by oncologist and practice characteristics. For example, a greater percentage of oncologists with an academic affiliation used peer-reviewed medical literature and scientific conferences, as compared to those without an academic affiliation (p = 0.006). As the number and type of MMTP tests increase, providing oncologists with current information about their appropriate application is essential. Further understanding of how oncologists use specific information sources may improve the dissemination and effective implementation of new MMTPs and help tailor educational interventions based on provider characteristics.
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Neoplasias , Oncologistas , Humanos , Neoplasias/diagnóstico , Inquéritos e QuestionáriosRESUMO
BACKGROUND AND OBJECTIVE: A priority focus on palliative and supportive care is helping the 43.5 million caregivers who care for individuals with serious illness. Lacking support may lead to caregiver distress and poorer care delivery to patients with serious illness. We examined the potential of instrumental support (assistance with material and task performance) to mitigate distress among caregivers. METHOD: We analyzed data from the nationally representative Health Information National Trends Survey (HINTS V2, 2018). Informal/family caregivers were identified in HINTS V2 if they indicated they were caring for or making healthcare decisions for another adult with a health problem. We used the PROMIS® instrumental support four-item short-form T-scores and the Patient Health Questionnaire (PHQ-4) for distress. We examined multivariable linear regression models for associations between distress and instrumental support, adjusted for sampling weights, socio-demographics, and caregiving variables (care recipient health condition(s), years caregiving (≥2), relationship to care recipient, and caregiver burden). We examined interactions between burden and instrumental support on caregiver distress level. RESULTS: Our analyses included 311 caregivers (64.8% female, 64.9% non-Hispanic White). The unweighted mean instrumental support T-score was 50.4 (SD = 10.6, range = 29.3-63.3); weighted mean was 51.2 (SE = 1.00). Lower instrumental support (p < 0.01), younger caregiver age (p < 0.04), higher caregiving duration (p = 0.008), and caregiver unemployment (p = 0.006) were significantly associated with higher caregiver distress. Mean instrumental support scores by distress levels were 52.3 (within normal limits), 49.4 (mild), 48.9 (moderate), and 39.7 (severe). The association between instrumental support and distress did not differ by caregiver burden level. CONCLUSIONS: Poor instrumental support is associated with high distress among caregivers, suggesting the need for palliative and supportive care interventions to help caregivers leverage instrumental support.
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Cuidadores/psicologia , Apoio Social , Estresse Psicológico/terapia , Adulto , Idoso , Cuidadores/estatística & dados numéricos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Questionário de Saúde do Paciente , Estresse Psicológico/psicologiaRESUMO
OBJECTIVE: Social support may have a positive impact on health outcomes for patients and caregivers, but the extent to which social support and health outcomes are interrelated for both is unknown. We examine the dyadic interrelationships between social support and health among cancer patients and their caregivers. METHODS: Lung and colorectal cancer (CRC) patient and caregiver dyadic data were obtained from the Cancer Care Outcomes Research and Surveillance Consortium. Patients and caregivers self-reported sociodemographic, social support, and caregiving characteristics at 5 (n = 218 lung; n = 222 CRC) or 12 months post-diagnosis (n = 198 lung; n = 290 CRC). Structural equation modeling was used to examine actor-partner interdependence models (APIM) of lung and CRC dyads at 5 and 12 months post-diagnosis. RESULTS: At 5 months post-diagnosis, no interdependence between patient and caregiver social support was detected for CRC or lung dyads (all P > 0.05). At 12 months post diagnosis, no interdependence was detected for CRC dyads (all P > 0.70); lung dyads showed complete interdependence, indicating patient social support is associated with better caregiver self-reported health (ß = 0.15, P < 0.001), and caregiver social support is associated with better patient self-reported health (ß = 0.18, P < 0.001). CONCLUSION: Social support has a positive impact on patient and caregiver perceived health across the cancer trajectory, and these effects may differ by cancer site and time. Future research and translational efforts are needed to identify effective ways to bolster both patient and caregiver social support and to determine critical moments for intervention.
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Cuidadores/psicologia , Neoplasias Colorretais/psicologia , Neoplasias Pulmonares/psicologia , Satisfação Pessoal , Qualidade de Vida/psicologia , Apoio Social , Adaptação Psicológica , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Autoimagem , AutorrelatoRESUMO
BACKGROUND: Rural cancer patients often have challenges in accessing quality care. This study examined associations between the place of residence at cancer diagnosis (urban vs rural) and patient ratings of access to care among older cancer survivors participating in Medicare-managed care. METHODS: Using Surveillance, Epidemiology, and End Results -Consumer Assessment of Healthcare Providers and Systems (SEER-CAHPS) linked data, which included SEER data and Medicare CAHPS patient experience surveys, this study identified urban (n = 6140) and rural Medicare beneficiaries (n = 686) aged ≥ 65 years with a breast, lung, colorectal, or prostate cancer diagnosis who had completed a Medicare CAHPS survey between 1998 and 2013. Multivariable models examined associations between survivor residence at the time of diagnosis and CAHPS measures of timeliness and ease of getting care. RESULTS: Respondents who resided in urban areas (vs rural) at the time of their cancer diagnosis rated their care significantly lower for Getting Care Quickly (b = -2.27; standard error = 0.95; P = .02). Although there were no overall significant differences for Getting Needed Care, there was a significant interaction between race/ethnicity and residence (P = .04): both non-Hispanic black and Hispanic respondents residing in rural areas rated Getting Needed Care lower than those respondents residing in urban areas. CONCLUSIONS: In contrast to prior studies, these findings suggest that rural survivors report more timely care than those in urban areas, but accessing needed care may be more challenging for racial/ethnic minority rural survivors. Future examination of specific barriers for urban and racial/ethnic minority rural survivors is warranted to ensure equitable access to quality cancer care. Cancer 2018. © 2018 American Cancer Society.
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Sobreviventes de Câncer , Neoplasias/epidemiologia , Neoplasias/terapia , Qualidade da Assistência à Saúde , Idoso , Etnicidade , Feminino , Pesquisas sobre Atenção à Saúde , Pessoal de Saúde , Humanos , Masculino , Medicare , Neoplasias/patologia , Avaliação de Resultados em Cuidados de Saúde , Satisfação do Paciente , População Rural , Programa de SEER , Estados Unidos , População UrbanaRESUMO
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.
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Comunicação em Saúde/normas , Disseminação de Informação/métodos , Redes Sociais Online , Leucemia-Linfoma Linfoblástico de Células Precursoras/prevenção & controle , Mídias Sociais/estatística & dados numéricos , Cuidadores , Criança , Humanos , PaisRESUMO
INTRODUCTION: Social workers collaborate with a wide range of healthcare providers in clinical trial teams, yet their roles may not always be understood or supported by team members. It is currently unknown how social workers and multidisciplinary team members perceive social workers' roles in the clinical trial context. METHODS: Using a group case-study approach, social workers, core medical team members, and allied healthcare workers (n = 19) completed in-depth interviews to discuss the roles of social workers in a cancer clinical trial setting. FINDINGS: Social workers discussed their role as primarily patient-centered, perceiving themselves to be a counselor, patient advocate, and conduit. They also described areas of perceived limited role contribution. Other members of the multidisciplinary teams viewed the roles of social workers to be focused on being a conduit and coordinator. DISCUSSION: We found discordance in the way that social workers and their team members view the roles of social workers in clinical trials. Our data suggest that structural and interpersonal barriers may prevent social workers from working to the full extent of their license in a clinical trial context. Implications, future research, and suggestions for interventions to more fully integrate social workers into clinical trial settings are discussed.
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Ensaios Clínicos como Assunto , Estudos Interdisciplinares , Neoplasias/terapia , Papel Profissional , Assistentes Sociais , Humanos , Equipe de Assistência ao PacienteRESUMO
BACKGROUND: Informal cancer caregivers provide essential support to cancer patients, including performing direct medical/nursing tasks, assisting with activities of daily living, and offering social support. This study examined associations between the receipt of medical/nursing skills training and the caregiver burden as well as the mediation of caregiving confidence on this relationship in a sample of caregivers of lung and colorectal cancer patients. METHODS: Caregivers who had been identified by cancer patients in the Cancer Care Outcomes Research and Surveillance consortium completed a questionnaire assessing the care provided, the type of medical/nursing skills training received, the burden (measured with the modified short-form Zarit Burden Interview), and the confidence in caring for their patient's physical needs. Regression models that had been adjusted for sociodemographic, caregiver, and care recipient characteristics assessed the relationship between training received and burden, and a mediation analysis assessed the role of confidence in this relationship. RESULTS: Six hundred forty-one caregivers performed some type of medical/nursing task, with 59% (n = 377) reporting that they did not receive training for all the care provided. Caregivers reported moderate levels of burden (mean summary score, 32.07; standard deviation, 12.66; possible range, 14-70), and a lack of receipt of training was associated with greater levels of burden (b = 2.60; standard error, 0.98; P = .01). Confidence partially mediated the relation between training and burden (Sobel's t = 1.90; P = 0.03). CONCLUSIONS: As the number of cancer patients and caregivers increases, understanding how best to reduce the caregiver burden is necessary. Skills training is a potential area for interventions, but research on how best to provide training for caregivers (ie, the content, mode of delivery, and timing) is needed. Cancer 2017;123:4481-7. © 2017 American Cancer Society.
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Cuidadores/educação , Competência Clínica , Efeitos Psicossociais da Doença , Educação em Enfermagem , Neoplasias/enfermagem , Atividades Cotidianas/psicologia , Adaptação Psicológica , Adulto , Idoso , Esgotamento Profissional/prevenção & controle , Esgotamento Profissional/psicologia , Educação em Enfermagem/métodos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação Pessoal , Qualidade de Vida , Apoio Social , Estresse Psicológico/prevenção & controle , Inquéritos e Questionários , Adulto JovemRESUMO
PURPOSE: We examined associations between experiences of care and adherence to surveillance guidelines among Medicare Fee-For-Service beneficiaries with colorectal cancer (CRC). METHODS: Using linked data from the National Cancer Institute's Surveillance, Epidemiology, and End results (SEER) cancer registry program and the Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS®) patient experience surveys (SEER-CAHPS), we identified local/regional CRC survivors diagnosed in 1999-2009 aged 65+, who underwent surgical resection and completed a CAHPS survey <36 months of diagnosis. Adherence for a 3-year observation period was defined as receiving a colonoscopy; ≥2 carcinoembryonic antigen (CEA) tests; and each year had ≥2 office visits and ≥1 computerized tomography test. RESULTS: Many of the 314 participants reported ratings of a 9 or 10 out of 10 for overall care (55.4%), personal doctor (58.6%), health plan (59.6%), and specialist doctor (47.0%). Adherence to post-resection surveillance was 76.1% for office visits, 36.9% for CEA testing, 48.1% for colonoscopy, and 10.3% for CT Imaging. Overall, 37.9% of the sample were categorized as non-adherent (adhering to ≤1 surveillance guideline). In multivariable models, ratings of personal doctor and specialist doctor were positively associated with adherence to office visits, and ratings of personal doctor were associated with adherence overall. CONCLUSIONS: Findings point to the potentially important role of patient-provider relationships in adherence to office visits for CRC surveillance. As adherence may increase survival among CRC survivors, further investigation is needed to identify specific components of this relationship that impact office visit adherence, and other potentially modifiable drivers of surveillance guidelines.