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1.
Cancer ; 2024 Jul 17.
Artículo en Inglés | MEDLINE | ID: mdl-39017818

RESUMEN

BACKGROUND: This study examines patients' understanding of health insurance terms and concepts and quantifies health insurance literacy (HIL) levels by key sociodemographic factors. METHODS: This study included 393 adult patients with cancer (>18 years old) receiving treatment in two ambulatory infusion centers: Mayo Clinic in Phoenix, Arizona and the University of Mississippi Medical Center in Jackson, Mississippi. Respondents' perceptions of their HIL were assessed using the Health Insurance Literacy Measure (HILM), a validated 21-item measure of a consumer's ability to select and use health insurance (HIL self-efficacy). Respondents' knowledge of health insurance concepts (HIL knowledge) was measured using 10 items created by the Kaiser Family Foundation. The number of correct answers was categorized into three levels: 0-4 (low knowledge), 5-6 (moderate knowledge), and 7-10 (high knowledge). Multivariable logistic regressions were used to compare correct answers to HIL knowledge questions by HIL self-efficacy. RESULTS: Nearly three-quarters of patients had high HIL self-efficacy and high HIL knowledge (70.5%), understanding basic insurance terms, such as premiums and deductibles. Relatively low percentages of patients correctly answered questions about the meaning of provider networks, health insurance formularies, and calculating out-of-pocket spending in scenarios when insurers pay a portion of allowed charges. Lower HIL knowledge was more common among patients with less educational attainment (

2.
Alzheimer Dis Assoc Disord ; 38(2): 147-151, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38757575

RESUMEN

PURPOSE: Lucid episodes (LEs: unexpected episodes of spontaneous, meaningful, and relevant communication or behavior) in Alzheimer disease and related dementias are a new area of scientific inquiry that lacks clinical consensus and require more conceptual attention. METHODS: We aimed to measure consensus from an expert group on: (1) potential medical or clinical explanations for LEs; (2) necessary medical and clinical context to LEs; and (3) interpretation of LEs. PATIENTS: We convened 13 experts from different disciplines (neurology, psychiatry, psychology, pharmacy, palliative care, hospice, nursing, social work, primary care, geriatrics, and professional home caregivers) to identify elements of LEs. RESULTS: Experts provided a range of opinions on medical and clinical explanations and questions to understand LEs. Consensus on LEs when presented with clinical vignettes was not reached. Panelists highlighted key medical and contextual factors needed to make a definitive judgement about LEs. CONCLUSION: There is variability in how LEs are interpreted by clinical experts, which complicates the identification of LEs in Alzheimer disease and related dementias.


Asunto(s)
Técnica Delphi , Demencia , Humanos , Consenso , Enfermedad de Alzheimer/diagnóstico , Enfermedad de Alzheimer/psicología , Femenino , Masculino
3.
Alzheimers Dement ; 20(4): 2434-2443, 2024 04.
Artículo en Inglés | MEDLINE | ID: mdl-38305566

RESUMEN

INTRODUCTION: This study examined lucid episodes among people living with late-stage Alzheimer's disease and related dementias (PLWD) and then developed a typology of these episodes to help characterize them. METHODS: Family caregivers of PLWD provided information about witnessed episodes, including proximity to death, cognitive status, duration, communication quality, and circumstances prior to lucid episodes on up to two episodes (caregiver N = 151; episode N = 279). Latent class analysis was used to classify and characterize empirically distinct clusters of lucid episodes. RESULTS: Four lucid episode types were identified. The most common type occurred during visits with family and among PLWD who lived > 6 months after the episode. The least common type coincided with family visits and occurred within 7 days of the PLWD's death. DISCUSSION: Findings suggest that multiple types of lucid episodes exist; not all signal impending death; and some, but not all, are precipitated by external stimuli.


Asunto(s)
Enfermedad de Alzheimer , Humanos , Enfermedad de Alzheimer/psicología , Cognición , Cuidadores , Comunicación
4.
J Cancer Educ ; 39(2): 160-167, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38044415

RESUMEN

Digital storytelling (DST) interventions may be one way to address disparities in cancer screening experienced by the Hispanic/Latino population. Digital stories are short, first-person narratives that include voice-over narration and images. With storytellers' permission, researchers can screen digital stories as a health intervention. Digital stories can inspire viewers to adopt or change their behavior, such as completing cancer screening. Rochester Healthy Community Partnership (a 20-year community-based participatory research partnership) together with eight Hispanic/Latino, Spanish speaking cancer survivors, co-survivors, or recently screened individuals, developed digital stories about breast, cervical, and colorectal cancer screening. Here, we describe our qualitative evaluation of the DST workshop. To understand what the storytellers thought viewers would find relatable in their digital stories, we applied Narrative Theory. We also assessed workshop successes and opportunities for improvement. We used the constant comparative method for data analysis. We learned that the storytellers anticipated their stories would be engaging and that viewers would connect with Hispanic/Latino cultural values. During the workshop, the storytellers felt like they were making an important contribution. The storytellers highlighted specific opportunities for improvement including sharing the stories more quickly after the workshop. Future research is needed to test whether this intervention follows the Narrative Theory causal pathway by persuading viewers to complete recommended cancer screenings.


Asunto(s)
Neoplasias de la Mama , Neoplasias Colorrectales , Detección Precoz del Cáncer , Neoplasias del Cuello Uterino , Humanos , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/prevención & control , Comunicación , Hispánicos o Latinos , Narración , Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/prevención & control , Neoplasias del Cuello Uterino/diagnóstico , Neoplasias del Cuello Uterino/prevención & control
5.
Prev Med ; 177: 107773, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37972862

RESUMEN

BACKGROUND: Physical activity can improve physical health for people living with mild cognitive impairment (MCI) and dementia and may have cognitive benefits. Identifying modifiable social factors inhibiting physical activity among this group is needed. We sought to examine the relationship between reported physical activity levels and social determinants of health (SDOH) in a population of older adults living with MCI or dementia. METHODS: This descriptive study included people with a diagnosis of MCI or dementia followed by Community Internal Medicine at Mayo Clinic (Rochester, Minnesota, United States), aged over 55 years, who had a clinic visit between June 1, 2019 and June 30, 2021 and had completed a SDOH questionnaire. We focused on 8 SDOH domains: education, depression, alcohol use, stress, financial resource strain, social connections, food insecurity, and transportation needs. Data were analyzed based on physical activity level (inactive, insufficiently active, sufficiently active). SDOH domains were compared according to physical activity level using the χ2 test and multinomial logistic regression. RESULTS: A total of 3224 persons with MCI (n = 1371) or dementia (n = 1853) who had completed questions on physical activity were included. Of these, 1936 (60%) were characterized as physically inactive and 837 (26%) insufficiently active. Characteristics associated with an increased likelihood of physical inactivity were older age, female sex, obesity, lower education, dementia diagnosis, screening positive for depression and increased social isolation (p < 0.001). CONCLUSIONS: Physical inactivity is common among people living with MCI and dementia. Physical activity levels may be influenced by many factors, highlighting potential areas for intervention.


Asunto(s)
Disfunción Cognitiva , Demencia , Humanos , Femenino , Estados Unidos/epidemiología , Anciano , Determinantes Sociales de la Salud , Disfunción Cognitiva/epidemiología , Ejercicio Físico , Demencia/diagnóstico , Encuestas y Cuestionarios
6.
Support Care Cancer ; 31(12): 697, 2023 Nov 14.
Artículo en Inglés | MEDLINE | ID: mdl-37962699

RESUMEN

PURPOSE: Symptoms can negatively impact quality of life for patients with a history of cancer. Digital, electronic health record (EHR)-integrated approaches to routine symptom monitoring accompanied by evidence-based interventions for symptom management have been explored as a scalable way to improve symptom management, particularly between clinic visits. However, little research has evaluated barriers and facilitators to implementing these approaches in real-world settings, particularly during the pre-implementation phase. Pre-implementation assessment is critical for informing the selection and sequencing of implementation strategies and intervention adaptation. Thus, this study sought to understand pre-implementation perceptions of a remote cancer symptom monitoring and management intervention that uses electronic patient-reported outcome measures for symptom assessment. METHODS: We interviewed 20 clinical and administrative stakeholders from 4 geographic regions within an academic medical center and its affiliated health system during the months prior to initiation of a stepped-wedge, cluster randomized pragmatic trial. Transcripts were coded using the Consolidated Framework for Implementation Research [CFIR] 2.0. Two study team members reviewed coded transcripts to understand how determinants were relevant in the pre-implementation phase of the trial and prepared analytic memos to identify themes. RESULTS: Findings are summarized in four themes: (1) ability of the intervention to meet patient needs [recipient characteristics], (2) designing with care team needs in mind [innovation design and adaptability], (3) fit of the intervention with existing practice workflows [compatibility], and (4) engaging care teams early [engaging deliverers]. CONCLUSION: Attention to these aspects when planning intervention protocols can promote intervention compatibility with patients, providers, and practices thereby increasing implementation success.


Asunto(s)
Neoplasias , Calidad de Vida , Humanos , Centros Médicos Académicos , Atención Ambulatoria , Cognición , Neoplasias/terapia , Medición de Resultados Informados por el Paciente
7.
J Community Health ; 48(4): 678-686, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-36920709

RESUMEN

Human papillomavirus (HPV) vaccine uptake among adolescents remains suboptimal in the US. The COVID-19 pandemic posed new challenges to increase HPV vaccination rates. To characterize parent-reported barriers to obtain HPV vaccination for their children and to identify psychosocial factors associated with parents' intention to vaccinate their children for HPV, we administered parent surveys between April 2020 and January 2022 during a randomized pragmatic trial assessing the impact of evidence-based implementation strategies on HPV vaccination rates for adolescent patients at six Mayo Clinic primary care practices in Southeast Minnesota. A total of 342 surveys were completed (response rate 34.1%). Analyses were focused on parents of unvaccinated children (n = 133). The survey assessed the main reason the child did not receive the HPV vaccine, parental beliefs about the vaccine, and the parent's intention to vaccinate the child for HPV in the next 12 months. Frequently reported awareness and access barriers to HPV vaccination included not knowing the child was due (17.8%) and COVID-19 related delay (11.6%). Frequently reported attitudinal barriers include the belief that the child was too young for the vaccine (17.8%) and that the vaccine is not proven to be safe (16.3%). Injunctive social norm (Adjusted-OR = 3.15, 95%CI: 1.94, 5.41) and perceived harm beliefs (Adjusted-OR = 0.58, 95%CI: 0.35, 0.94) about the HPV vaccine were positively and negatively associated with HPV vaccination intention, respectively. Our findings suggest that continued efforts to overcome parental awareness, access, and attitudinal barriers to HPV vaccination are needed and underscore the importance of utilizing evidence-based health system-level interventions.


Asunto(s)
COVID-19 , Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Adolescente , Humanos , Niño , Minnesota , Intención , Infecciones por Papillomavirus/prevención & control , Pandemias , Conocimientos, Actitudes y Práctica en Salud , COVID-19/epidemiología , COVID-19/prevención & control , Padres/psicología , Vacunación , Encuestas y Cuestionarios , Vacunas contra Papillomavirus/uso terapéutico , Atención Primaria de Salud , Aceptación de la Atención de Salud
8.
Alzheimers Dement ; 19(1): 343-352, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-35757902

RESUMEN

Episodes of lucidity (ELs) in Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRD), have garnered increasing attention as an important area of research. Efforts to study lucidity suffer from a lack of clear definitional criteria, inconsistent conceptualization, and diverse approaches to operationalizing features of these events. To advance systematic investigation of ELs in AD/ADRD, there is a need for clarity and precision in labeling event attributes, markers, and specific measurement strategies that enable operational harmonization across distinct approaches to investigating the relatively broad and nascent phenomenon. To that end, we propose a preliminary research framework to guide harmonization of approaches to investigating ELs in AD/ADRD. Our goal is to provide an initial schematic that encourages uniform labeling of operational decisions about ELs.


Asunto(s)
Enfermedad de Alzheimer , Demencia , Humanos , Cognición
9.
Prev Chronic Dis ; 19: E19, 2022 04 14.
Artículo en Inglés | MEDLINE | ID: mdl-35420980

RESUMEN

INTRODUCTION: Colorectal cancer (CRC) screening among average-risk patients is underused in the US. Clinician recommendation is strongly associated with CRC screening completion. To inform interventions that improve CRC screening uptake among average-risk patients, we examined clinicians' routine recommendations of 7 guideline-recommended screening methods and factors associated with these recommendations. METHODS: We conducted an online survey in November and December 2019 among a sample of primary care clinicians (PCCs) and gastroenterologists (GIs) from a panel of US clinicians. Clinicians reported whether they routinely recommend each screening method, screening method intervals, and patient age at which they stop recommending screening. We also measured the influence of various factors on screening recommendations. RESULTS: Nearly all 814 PCCs (99%) and all 159 GIs (100%) reported that they routinely recommend colonoscopy for average-risk patients, followed by stool-based tests (more than two-thirds of PCCs and GIs). Recommendation of other visualization-based methods was less frequent (PCCs, 26%-35%; GIs, 30%-41%). A sizable proportion of clinicians reported guideline-discordant screening intervals and age to stop screening. Guidelines and clinical evidence were most frequently reported as very influential to clinician recommendations. Factors associated with routine recommendation of each screening method included clinician-perceived effectiveness of the method, clinician familiarity with the method, Medicare coverage, clinical capacity, and patient adherence. CONCLUSION: Clinician education is needed to improve knowledge, familiarity, and experience with guideline-recommended screening methods with the goal of effectively engaging patients in informed decision making for CRC screening.


Asunto(s)
Neoplasias Colorrectales , Detección Precoz del Cáncer , Anciano , Colonoscopía , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/prevención & control , Detección Precoz del Cáncer/métodos , Humanos , Tamizaje Masivo , Medicare , Sangre Oculta , Estados Unidos
10.
J Aging Soc Policy ; : 1-8, 2022 Feb 13.
Artículo en Inglés | MEDLINE | ID: mdl-35156557

RESUMEN

In this Perspective, we contend bold action is needed to improve transitions from hospitals to home for aging patients and their family caregivers living in rural and underserved areas. The Caregiver Advise, Record, Enable (CARE) Act, passed in over 40 US states, is intended to provide family caregivers of hospitalized patients with the knowledge and skills needed for safe and efficient transitions. It has broken important ground for family caregivers who assist with transitions in patient care. It may fall short, however, in addressing the unique needs of family caregivers living in rural and underserved areas. We contend that to realize the intended safety, cost, and care quality benefits of the CARE Act, especially for those living in rural and underserved areas, states need to expand the Act's scope. We provide three recommendations: 1) modify hospital information systems to support the care provided by family caregivers; 2) require assessments of family caregivers that reflect the challenges of family caregiving in rural and underserved areas; and 3) identify local resources to improve discharge planning. We describe the rationale for each recommendation and the potential ways that an expanded CARE Act could reduce the risks associated with transitions in care for aging patients.


Key Points:1. Recent state laws aim to support family caregivers of hospitalized patients.2. These laws do not account for the unique needs of rural caregivers.3. Expanding laws to address rural caregiver needs may improve patient outcomes.

11.
J Gen Intern Med ; 36(8): 2370-2377, 2021 08.
Artículo en Inglés | MEDLINE | ID: mdl-33564941

RESUMEN

BACKGROUND: Patients with disabilities often require healthcare accommodations in order to access high-quality, equitable healthcare services. While attention has been paid to accommodation needs in specific disability populations, limited research to date has explored healthcare accommodations that cross-cut diverse disability populations. OBJECTIVE: To identify a deeper understanding regarding accommodations in healthcare settings that could apply across disability populations and promote equitable healthcare. DESIGN: We conducted qualitative focus groups with patients with disabilities and caregivers to understand their experiences and preferences for healthcare accommodations. PARTICIPANTS: We recruited patients and caregivers across all major disability categories to participate in focus groups. Participants were recruited through advocacy organizations and healthcare settings in Southeastern Minnesota. APPROACH: A total of eight focus groups were conducted with 56 participants. Participants described their healthcare experiences and desires for healthcare accommodations. The multidisciplinary research team recorded, transcribed verbatim, and coded all focus groups. The team thematically coded transcripts using content analysis within and across focus groups to identify major themes. KEY RESULTS: Patients identified four challenges and corresponding steps healthcare team could take to promote equitable care: (1) consistent documentation of disabilities and needed accommodations in the medical record; (2) allowance for accommodations to the environment, including adapting physical space, physical structures, and scheduling and rooming processes; (3) provide accommodations for administrative tasks, such as completing paper or electronic forms; and (4) adapt communication during interactions, such as speaking slower or using terms that patients can easily understand. CONCLUSION: These identified themes represent specific opportunities for healthcare teams to effectively provide accessible care to patients with disabilities. Many of the accommodations require minimal financial investment, but did require behavioral changes by the healthcare team to ensure equitable healthcare.


Asunto(s)
Personas con Discapacidad , Cuidadores , Atención a la Salud , Grupos Focales , Humanos , Investigación Cualitativa
12.
J Natl Compr Canc Netw ; 18(7): 825-831, 2020 07.
Artículo en Inglés | MEDLINE | ID: mdl-32634772

RESUMEN

BACKGROUND: Financial distress from medical treatment is an increasing concern. Healthcare organizations may have different levels of organizational commitment, existing programs, and expected outcomes of screening and management of patient financial distress. PATIENTS AND METHODS: In November 2018, representatives from 17 (63%) of the 27 existing NCCN Member Institutions completed an online survey. The survey focused on screening and management practices for patient financial distress, perceived barriers in implementation, and leadership attitudes about such practices. Due to the lack of a validated questionnaire in this area, survey questions were generated after a comprehensive literature search and discussions among the study team, including NCCN Best Practices Committee representatives. RESULTS: Responses showed that 76% of centers routinely screened for financial distress, mostly with social worker assessment (94%), and that 56% screened patients multiple times. All centers offered programs to help with drug costs, meal or gas vouchers, and payment plans. Charity care was provided by 100% of the large centers (≥10,000 unique annual patients) but none of the small centers that responded (<10,000 unique annual patients; P=.008). Metrics to evaluate the impact of financial advocacy services included number of patients assisted, bad debt/charity write-offs, or patient satisfaction surveys. The effectiveness of institutional practices for screening and management of financial distress was reported as poor/very poor by 6% of respondents. Inadequate staffing and resources, limited budget, and lack of reimbursement were potential barriers in the provision of these services. A total of 94% agreed with the need for better integration of financial advocacy into oncology practice. CONCLUSIONS: Three-fourths of NCCN Member Institutions reported screening and management programs for financial distress, although the actual practices and range of services vary. Information from this study can help centers benchmark their performance relative to similar programs and identify best practices in this area.


Asunto(s)
Estatus Económico , Financiación Personal , Gastos en Salud , Neoplasias , Atención a la Salud/economía , Humanos , Oncología Médica , Neoplasias/diagnóstico , Neoplasias/economía , Neoplasias/terapia , Encuestas y Cuestionarios
13.
Cancer Control ; 27(1): 1073274820977112, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33345595

RESUMEN

We conducted a survey of primary care clinicians and gastroenterologists (n = 938) between 11/06/19-12/06/19 to assess knowledge and attitudes regarding colorectal cancer screening. We assessed clinicians' attitudes toward lowering the colorectal cancer screening initiation age to 45 years, a topic of current debate. We also evaluated provider and practice characteristics associated with agreement. Only 38.1% of primary care clinicians endorsed colorectal cancer screening initiation at age 45 years, compared to 75.5% of gastroenterologists (p < .0001). Gastroenterologists were over 5 times more likely than primary care clinicians to endorse lowering the screening initiation age (OR = 5.30, 3.54-7.93). Other factors found to be independently associated with agreement with colorectal cancer screening initiation at age 45 years included seeing more than 25 patients per day (vs. fewer) and suburban (vs. urban) location. Results emphasize the need for collaboration between primary care clinicians and gastroenterologists to ensure that patients receive consistent messaging and evidence-based care.


Asunto(s)
Neoplasias Colorrectales/diagnóstico , Detección Precoz del Cáncer/normas , Gastroenterólogos/estadística & datos numéricos , Tamizaje Masivo/normas , Médicos de Atención Primaria/estadística & datos numéricos , Adulto , Factores de Edad , Neoplasias Colorrectales/epidemiología , Neoplasias Colorrectales/prevención & control , Consenso , Detección Precoz del Cáncer/estadística & datos numéricos , Detección Precoz del Cáncer/tendencias , Femenino , Gastroenterólogos/normas , Humanos , Incidencia , Masculino , Tamizaje Masivo/estadística & datos numéricos , Tamizaje Masivo/tendencias , Persona de Mediana Edad , Mortalidad/tendencias , Médicos de Atención Primaria/normas , Guías de Práctica Clínica como Asunto , Pautas de la Práctica en Medicina/normas , Pautas de la Práctica en Medicina/estadística & datos numéricos , Pautas de la Práctica en Medicina/tendencias , Encuestas y Cuestionarios/estadística & datos numéricos , Estados Unidos
14.
Support Care Cancer ; 27(3): 1149, 2019 03.
Artículo en Inglés | MEDLINE | ID: mdl-30554275

RESUMEN

The "NCI Grant No. 5R25CA116339, Outcomes Research Branch of the National Cancer Institute, National Institutes of Health" is not included in the Funding information. The below is the correct "Funding/Support".

15.
Arch Phys Med Rehabil ; 99(11): 2222-2229, 2018 11.
Artículo en Inglés | MEDLINE | ID: mdl-29729228

RESUMEN

OBJECTIVE: To assess the association between perceived stigma and discrimination and caregiver strain, caregiver well-being, and patient community reintegration. DESIGN: A cross-sectional survey study of 564 informal caregivers of U.S. military service veterans of wars in Iraq and Afghanistan who experienced traumatic brain injuries or polytrauma (TBI/PT). SETTING: Care settings of community-dwelling former inpatients of U.S. Department of Veterans Affairs Polytrauma Rehabilitation Centers. PARTICIPANTS: Caregivers of former inpatients (N=564), identified through next-of-kin records and subsequent nominations. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Caregiver strain, depression, anxiety, loneliness, and self-esteem; as well as care recipient community reintegration, a key aspect of TBI/PT rehabilitation. RESULTS: Family stigma was associated with strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration. Caregiver stigma-by-association was associated with strain, depression, anxiety, loneliness, and lower self-esteem. Care recipient stigma was associated with caregiver strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration. CONCLUSIONS: Perceived stigma may be a substantial source of stress for caregivers of U.S. military veterans with TBI/PT, and may contribute to poor outcomes for the health of caregivers and for the community reintegration of the veterans for whom they provide care.


Asunto(s)
Lesiones Traumáticas del Encéfalo/psicología , Cuidadores/psicología , Integración a la Comunidad/psicología , Traumatismos Ocupacionales/psicología , Estigma Social , Veteranos/psicología , Adaptación Psicológica , Adulto , Campaña Afgana 2001- , Lesiones Traumáticas del Encéfalo/rehabilitación , Estudios Transversales , Femenino , Humanos , Guerra de Irak 2003-2011 , Masculino , Persona de Mediana Edad , Traumatismos Ocupacionales/rehabilitación , Centros de Rehabilitación , Estados Unidos
16.
Int J Qual Health Care ; 30(5): 408-413, 2018 Jun 01.
Artículo en Inglés | MEDLINE | ID: mdl-29509910

RESUMEN

OBJECTIVE: In December 2016, 66 health leaders from 14 countries convened at the Salzburg Global Seminar (SGS) to engage in cross-cultural and collaborative discussions centered on 'Rethinking Care Toward the End of Life'. Conversations focused on global perspectives on death and dying, challenges experienced by researchers, physicians, patients and family caregivers. This paper summarizes key findings and recommendations from SGS. DESIGN: Featured sessions focused on critical issues of end of life care led by key stakeholders, physicians, researchers, and other global leaders in palliative care. Sessions spanned across several critical themes including: patient/family/caregiver engagement, integrating health and community-based social care, eliciting and honoring patient preferences, building an evidence base for palliative care, learning from system failures, and delivering end of life care in low-resource countries. Sessions were followed by intensive collaborative discussions which helped formulate key recommendations for rethinking and ultimately advancing end of life care. RESULTS: Prominent lessons learned from SGS include learning from low-resource countries, development of evidence-based quality measures, implementing changes in training and education, and respecting the personal agency of patients and their families. CONCLUSION: There is a global need to rethink, and ultimately revolutionize end of life care in all countries. This paper outlines key aspects of end of life care that warrant explicit improvement through specific action from key stakeholders.


Asunto(s)
Cuidadores/psicología , Participación del Paciente/psicología , Cuidado Terminal/métodos , Países en Desarrollo , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/organización & administración , Garantía de la Calidad de Atención de Salud/métodos , Cuidado Terminal/organización & administración
17.
Geriatr Nurs ; 39(4): 443-449, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-29452768

RESUMEN

Heart failure (HF) is a chronic health condition that causes significant morbidity among older adults, many of whom receive support and care from an informal caregiver. Caregiving is a difficult role with many responsibilities and challenges. An in-depth understanding of these challenges is necessary to develop services, resources, and interventions for HF caregivers. The goal of this study was to qualitatively ascertain the most significant challenges facing HF caregivers. We conducted semi-structured interviews with 16 caregivers of a person with HF (PHF). Content analysis revealed challenges rooted within the PHF (negative affect, resistant behavior, independence, and illness) Caregiver (balancing employment, lack of support, time, and caregiver health) and Relational level (PHF/caregiver dyadic relationship and other relationships). These findings can be used to inform interventions and support services for HF caregivers.


Asunto(s)
Cuidadores/psicología , Enfermedad Crónica , Insuficiencia Cardíaca/enfermería , Apoyo Social , Anciano de 80 o más Años , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Investigación Cualitativa
18.
Cancer ; 123(21): 4092-4096, 2017 Nov 01.
Artículo en Inglés | MEDLINE | ID: mdl-28817185

RESUMEN

Financial burden from cancer treatment is increasingly being recognized as a threat to optimal access, quality, and outcomes of cancer care for patients. Although research in the area is moving at a fast pace, multiple questions remain unanswered, such as how to practically integrate the assessment and management of financial burden into routine health care delivery for patients with cancer. Although psychological distress screening for patients undergoing cancer treatment now is commonplace, the authors raise the provocative idea of universal screening for financial distress to identify and assist vulnerable groups of patients. Herein, the authors outline the arguments to support screening for financial burden in addition to psychological distress, examining it as an independent patient-reported outcome for all patients with cancer at various time points during their treatment. The authors describe the proximal and downstream impact of such a strategy and reflect on some challenges and potential solutions to help integrate this concept into routine cancer care delivery. Cancer 2017;123:4092-4096. © 2017 American Cancer Society.


Asunto(s)
Costo de Enfermedad , Financiación Personal/economía , Neoplasias/economía , Neoplasias/psicología , Estrés Psicológico/diagnóstico , Estrés Psicológico/economía , Acreditación , Antineoplásicos/economía , Instituciones Oncológicas , Costos de los Medicamentos , Conductas Relacionadas con la Salud , Humanos , Inmunoterapia/economía , Neoplasias/terapia , Calidad de Vida , Estrés Psicológico/terapia , Encuestas y Cuestionarios
19.
Genet Med ; 19(7): 819-825, 2017 07.
Artículo en Inglés | MEDLINE | ID: mdl-28055020

RESUMEN

PURPOSE: To examine predictors of understanding preemptive CYP2D6 pharmacogenomics test results and to identify key features required to improve future educational efforts of preemptive pharmacogenomics testing. METHODS: One thousand ten participants were surveyed after receiving preemptive CYP2D6 pharmacogenomics test results. RESULTS: Eighty-six percent (n = 869) of patients responded. Of the responders, 98% were white and 55% were female; 57% had 4 years or more of post-secondary education and an average age of 58.9 ± 5.5 years. Twenty-six percent said that they only somewhat understood their results and 7% reported they did not understand them at all. Only education predicted understanding. The most common suggestion for improvement was the use of layperson's terms when reporting results. In addition, responders suggested that results should be personalized by referring to medications that they were currently using. Of those reporting imperfect drug adherence, most (91%) reported they would be more likely to use medication as prescribed if pharmacogenomic information was used to help select the drug or dose. CONCLUSION: Despite great efforts to simplify pharmacogenomic results (or because of them), approximately one-third of responders did not understand their results. Future efforts need to provide more examples and tailor results to the individual. Incorporation of pharmacogenomics is likely to improve medication adherence.Genet Med advance online publication 05 January 2017.


Asunto(s)
Educación del Paciente como Asunto/métodos , Farmacogenética/educación , Adulto , Anciano , Comprensión , Citocromo P-450 CYP2D6/farmacología , Femenino , Predicción/métodos , Pruebas Genéticas , Humanos , Masculino , Persona de Mediana Edad , Pacientes , Percepción , Farmacogenética/métodos , Medicina de Precisión/métodos , Encuestas y Cuestionarios
20.
J Gen Intern Med ; 32(12): 1342-1348, 2017 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-28924919

RESUMEN

BACKGROUND: Accessible diagnostic equipment, including height-adjustable examination tables, is necessary to accommodate patients with disabilities. Studies demonstrate that only a minority of clinics provide accessible equipment. For clinics with this equipment, no studies have examined the use of such equipment in routine clinical care. OBJECTIVE: In primary care clinics with and without height-adjustable examination tables, we compared the frequency and variation in physical evaluations on examination tables and patients' perceptions of quality care. DESIGN: Survey administered to patients at two primary care clinics in Rochester, MN, in 2015. One clinic had height-adjustable examination tables in every exam room; the other clinic had none. PATIENTS: A total of 399 English-speaking adult primary care patients (61% participation). MAIN MEASURES: Participants were asked whether they were physically evaluated on a table during their clinical encounter. In addition, they completed two subscales of the Patient Perception of Quality of Care survey: Perceptions of Provider's Bedside Manner and Perceptions of Provider's Work. KEY RESULTS: Overall, there were no differences between clinics in the likelihood of patients being examined on an exam table or in their perceptions of quality of care. Across both clinics, patients who reported a disability were 27% less likely to be examined on a table, were less likely to rate their provider's bedside manner favorably (74% vs. 59%) and to have positive perceptions of their provider's work (46% vs. 32%) than patients without disabilities. CONCLUSIONS: The presence of accessible medical equipment was not associated with care delivered to patients. While this might not be meaningful for most patients, it could be problematic for patients with disabilities, who are less likely to be examined. Therefore, accessible equipment alone may not be sufficient to reduce disparities in the care experience. Provider- and organization-level factors must thus be considered in efforts to provide equitable care to patients with disabilities.


Asunto(s)
Actitud Frente a la Salud , Mesas de Exámenes/estadística & datos numéricos , Atención Primaria de Salud/organización & administración , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Personas con Discapacidad/psicología , Diseño de Equipo , Encuestas de Atención de la Salud , Accesibilidad a los Servicios de Salud , Humanos , Persona de Mediana Edad , Minnesota , Examen Físico/instrumentación , Examen Físico/psicología , Examen Físico/normas , Relaciones Médico-Paciente , Atención Primaria de Salud/normas , Calidad de la Atención de Salud , Adulto Joven
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