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1.
Oncologist ; 29(7): 629-637, 2024 Jul 05.
Artículo en Inglés | MEDLINE | ID: mdl-38652165

RESUMEN

INTRODUCTION: The objective of this study was to comprehensively understand the burden experienced by caregivers (CGs) providing home-based, end-of-life care to patients with cancer. We examined the relationship between objective and subjective burden including whether and how burden changes over time. METHODS: A case series of terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for 12 months or until patient death. Data were collected every other week and in-person from CGs in their homes using quantitative surveys, diaries, and monthly structured observations. RESULTS: Bivariate correlations revealed a significant association between subjective burden and activities of daily living (ADLs), instrumental activities of daily living (IADL), high-intensity tasks, and time spent on ADLs; these correlations varied over time. Models examining the slope of subjective burden revealed little systematic change; spouse caregiver and patient functional limitations were positively, and Black caregiver was negatively associated with subjective burden. Generally, the slopes for measures of objective burden were significant and positive. Models showed subjective burden was positively associated with most measures of objective burden both within caregiver (concurrent measures were positively associated) and between CGs (those with higher subjective also had higher objective). CONCLUSIONS: Cancer caregiving is dynamic; CGs must adjust to the progression of the patient's disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services.


Asunto(s)
Actividades Cotidianas , Cuidadores , Neoplasias , Humanos , Neoplasias/psicología , Masculino , Femenino , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Persona de Mediana Edad , Anciano , Cuidado Terminal/psicología , Costo de Enfermedad , Adulto , Carga del Cuidador/psicología , Anciano de 80 o más Años
2.
Support Care Cancer ; 32(4): 233, 2024 Mar 18.
Artículo en Inglés | MEDLINE | ID: mdl-38499880

RESUMEN

PURPOSE: Cancer caregiving, a critical component in the cancer-care model, has deleterious effects on the caregiver's physical and mental health. The degree to which these negative effects are uniformly experienced by caregivers is unclear; effects may be exacerbated at the end of life when caregiving is intensified. Not all caregivers have the support of an additional involved support person (secondary caregiver). The impact of the secondary caregiver's absence on the primary caregiver's well-being is understudied. METHODS: Terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for six months or until patient death. Longitudinal latent growth models were used to characterize the heterogeneity of caregiver physical health and depressive symptoms; characteristics associated with these trajectories are examined. RESULTS: Caregivers were majority female (74%), white (55%) and patient spouses (60%). Two physical health (moderate, stable; initially good, declining) and two depressive symptom (moderate, stable; high, increasing) trajectories were identified. Declining physical health was more likely among caregivers who were healthiest at baseline, had higher levels of education, lower subjective burden, fewer depressive symptoms, cared for patients with fewer functional limitations and reported fewer caregiving tasks rendered by a secondary caregiver. Those with increasing depressive symptoms were more likely to be white, patient's wife, have higher subjective caregiver burden, lower physical health, and care for a patient with greater functional limitations. CONCLUSIONS: Decreasing physical health was evident among caregivers who were initially healthier and reported less assistance from secondary caregivers. Increasing depression was seen in white, female spouses with higher subjective burden. Sample heterogeneity revealed hidden groups unexpectedly at risk in the primary cancer caregiver role to which the oncology care team should be alert.


Asunto(s)
Cuidadores , Neoplasias , Humanos , Femenino , Cuidadores/psicología , Neoplasias/terapia , Neoplasias/psicología , Estado de Salud , Salud Mental , Esposos/psicología
3.
BMC Med Educ ; 24(1): 77, 2024 Jan 22.
Artículo en Inglés | MEDLINE | ID: mdl-38254115

RESUMEN

BACKGROUND: Approaching families of dying or newly deceased patients to donate organs requires specialized knowledge and a mastery of relational communication. As the transplantation field has progressed, Donation Professionals (DPs) are also leading conversations with family decision makers (FDMs) about the donation of uncommon anatomical gifts, such as face, hands, genitalia, referred to as Vascularized Composite Allotransplants (VCA) without much training or experience. To address the need for training, we adapted and beta tested an evidenced-based communication training program for donation discussions to VCA requests. The overarching goal of Communicating Effectively about Donation for Vascularized Composite Allotransplantation (CEaD-VCA) is to increase the number of VCA authorizations and to improve the socioemotional outcomes of FDMs. METHODS: We developed CEaD-VCA, an online, on-demand training program based on the previously tested, evidenced-based communication skills training program designed to train DPs to have conversations about solid organ donation. The training was modified utilizing data from a national telephone survey with DPs and results of 6 focus groups conducted with members of the general public. The survey and focus groups assessed knowledge, attitudes, and barriers to VCA donation. The training was shaped by a partnership with a leading industry partner, the Gift of Life Institute.™ RESULTS: Using the results as a guide, the existing CEaD training program, consisting of interactive eLearning modules, was adapted to include technical information about VCA, foundational communication skills, and two interactive example VCA donation request scenarios to facilitate active learning. Forty-two DPs from two partner Organ Procurement Organizations (OPOs) participated in the beta test of CEaD-VCA. Pre- and post-test surveys assessed the impact of the training. CONCLUSIONS: The training was scored highly by DPs in effectiveness and ease of use. This project created a standardized, accessible, and comprehensive training for DPs to communicate about VCA donation. CEaD-VCA is an example of how to develop a communication skills training for difficult conversations utilizing input from stakeholders, guided by communication theory. It also demonstrates how gaps in communication skills during medical education can be filled utilizing advanced online Learning Management Systems. The training specifically addresses new CMS rules concerning OPO performance metrics.


Asunto(s)
Educación Médica , Obtención de Tejidos y Órganos , Alotrasplante Compuesto Vascularizado , Humanos , Comunicación , Benchmarking
4.
Ann Fam Med ; 21(2): 112-118, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36750357

RESUMEN

OBJECTIVE: The extent of shared decision making (SDM) use in the care of Black patients is limited. We explored preferences, needs, and challenges of Black patients to enhance SDM offerings. METHODS: We performed interviews with 32 Black patients receiving type 2 diabetes care in safety-net primary care practices caring predominantly for Black people. RESULTS: The following 4 themes emerged: preference for humanistic communication, need to account for the role of family in decision making, need for medical information sharing, and mistrust of clinicians. CONCLUSION: Given the dearth of research on SDM among ethnic and racial minorities, this study offers patient-perspective recommendations to improve SDM offerings for Black patients in primary care settings. To enhance SDM with Black patients, acknowledgment of the importance of storytelling as a strategy, to place medical information in a context that makes it meaningful and memorable, is recommended. Triadic SDM, in which family members are centrally involved in decision making, is preferred over classical dyadic SDM. There is a need to reconsider the universalism assumption underlying contemporary SDM models and the relevancy of current SDM practices that were developed mostly without the feedback of participants of ethnic, racial, and cultural minorities.Annals "Online First" article.


Asunto(s)
Toma de Decisiones Conjunta , Diabetes Mellitus Tipo 2 , Humanos , Negro o Afroamericano , Toma de Decisiones , Diabetes Mellitus Tipo 2/terapia , Participación del Paciente
5.
J Cancer Educ ; 38(6): 1932-1938, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37715897

RESUMEN

Younger onset colorectal cancer (CRC) rates continue to rise. Survivors younger than the requisite age of population-based screening guidelines experience adverse symptoms, longer appraisal delays, and more advanced-stage diagnoses. This secondary analysis of interviews with n=252 recently diagnosed CRC survivors was completed to compare younger and older survivors' symptoms, attributed causes, and healthcare seeking assets. The original transcripts and quantitative data were divided into two survivor classifications, younger (age <50 years) (N=64) and older (N=188). Bivariate analyses assessed differences between younger and older survivors for symptoms, attributed causes, and seeking healthcare assets. Multiple logistic regression models adjusting for race, sex, income, education, and stage of diagnosis were conducted for significant bivariate findings. An α level .05 was used to detect significance. Bleeding (𝛘2=3.8, p =0.05) and loss of appetite/weight differed between survivors (𝛘2=5.3, p=0.02) but not after controlling for sex and race respectively. Younger survivors were more likely to report being too young/healthy to have cancer (𝛘2=7.8, p<0.01) and social support encouragement to seek healthcare (𝛘2=6.4, p=0.01). Having a regular healthcare provider was more common among older survivors (𝛘2=6.4, p=0.01). Logistic regression models also detected age as a significant predictor for all healthcare seeking assets. Clinical and public health practice can benefit from understanding that CRC symptoms may present similarly but assets that facilitate seeking healthcare appraisal differ based upon age. Expanding knowledge of CRC risk factors and symptoms across healthcare professionals and the general public could promote earlier appraisal regardless of age and improve outcomes for younger survivors.


Asunto(s)
Supervivientes de Cáncer , Neoplasias Colorrectales , Humanos , Persona de Mediana Edad , Sobrevivientes , Estado de Salud , Neoplasias Colorrectales/diagnóstico , Atención a la Salud
6.
Support Care Cancer ; 30(2): 1597-1605, 2022 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-34546455

RESUMEN

BACKGROUND: Informal caregivers play a fundamental role in the care of hematological cancer patients, but less is known about how secondary caregivers are involved. We assessed the presence or absence of a secondary caregiver, the types of caregiving activities performed by primary and secondary caregivers, and examined whether the presence of a secondary caregiver was associated with primary caregiver characteristics and well-being over time. METHODS: A case series of hematological cancer patient-caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Multilevel models were developed to examine the associations between the presence of a secondary caregiver and the primary caregivers' well-being. RESULTS: Most (64.9%) primary caregivers reported having secondary caregivers. Multilevel models showed primary caregivers without help had higher baseline mental and physical health, but experienced deteriorating physical health over time, compared to supported primary caregivers. Supported primary caregivers reported improvements in mental health over time that was associated with improvements in physical health. CONCLUSIONS: Primary caregivers in good physical and mental health at the beginning of their caregiving journey but who have the least assistance from others may be at greatest risk for detrimental physical health effects long term. Attention to the arrangement of caregiving roles (i.e., who provides what care) over time is needed to ensure that caregivers remain healthy and well supported.


Asunto(s)
Cuidadores , Neoplasias , Estado de Salud , Humanos , Salud Mental , Neoplasias/terapia , Pennsylvania
7.
J Health Commun ; 27(7): 450-459, 2022 07 03.
Artículo en Inglés | MEDLINE | ID: mdl-36062983

RESUMEN

Organ donation disparities among ethnic minorities have persisted for decades, especially among Asian Americans (AAs). AAs represent a substantial proportion of the national transplant waitlist but have historically had the lowest organ donation rate in the United States. Community based and culturally tailored (CBCT) interventions are needed to increase donor designation within AA communities. In collaboration with local AA organizations and representatives and national partners, we developed a culturally and linguistically tailored video using a family appeal to promote donor designation among AAs. The video was distributed on social media platforms in two stages from February 17 to September 17, 2021 and tracked Reaches, Impressions, Views, and Engagements as part of a larger evaluation. The results revealed higher social media activities and engagements on Facebook than on Instagram with and without paid advertisements, although the paid approach yielded 5 to 16 times higher viewer engagement. Over six months, the video reached 36,845 AAs and gained 53,308 Impressions, 20,139 Views, 2,455 Engagements, and 232 visits to the organ donation registration page. The findings indicated Facebook and CBCT approaches as effective communication strategies to potentially raise AAs' organ donation awareness, especially among AA females over 45 years of age. Implications and limitations are discussed.


Asunto(s)
Medios de Comunicación Sociales , Obtención de Tejidos y Órganos , Femenino , Humanos , Asiático , Donantes de Tejidos , Estados Unidos
8.
Cell Tissue Bank ; 22(3): 431-441, 2021 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-33386465

RESUMEN

This study sheds light on the attitudes and circumstances that influence decisions by families to donate the brain of a deceased family member for research. This study, a part of the Genotype-Tissue Expression (GTEx) project, interviewed families of patients who had authorized organ and/or tissue donation for transplantation. A total of 384 family decision makers (FDMs) who decided to donate organs and/or tissues for transplantation were also asked to donate to GTEx. Of these, 297 families were asked to donate their loved one's whole brain and 87 families responded to a hypothetical request for brain donation. The decision to donate the brain to GTEx, actually or hypothetically, was the major outcome measure. The majority of the FDMs would choose to donate the brain, 78%. Unwillingness to donate the brain was associated with four attitudes: (1) the FDM unwillingness to donate their own tissues for research (OR 1.91, 95% CI .67 to 2.96; p = .05), (2) concern with potential for-profit use of tissues (OR 2.12, 95% CI 1.2 to 3.7; p = .008), (3) reported squeamishness about tissue donation (OR 1.34, 95% CI 1.1 to 1.7; p = .006), and (4) belief that FDMs should have a say in how the donated tissues are used (OR 1.36, 95% CI 1.13 to 1.5; p = .01). Organ and tissue donors may present a plenteous source of brains for research. Family concerns about tissue use and collection should be addressed by requesters.


Asunto(s)
Familia , Obtención de Tejidos y Órganos , Encéfalo , Toma de Decisiones , Genómica , Genotipo , Conocimientos, Actitudes y Práctica en Salud , Humanos , Donantes de Tejidos
9.
Psychooncology ; 29(10): 1571-1578, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-32627258

RESUMEN

OBJECTIVE: Informal caregivers play a fundamental role in care and decision making with hematological cancer patients. Concordant patient-caregiver communication is a critical antecedent to high quality decision making. Little is known about patterns of dyadic communication throughout the cancer treatment continuum. The objective of this study was to assess patterns of cancer communication concordance regarding treatment and care among hematological cancer patients undergoing active treatment and their informal caregivers and test whether patterns were associated with participant characteristics. METHODS: A case series of hematological cancer patient-caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Latent Class Growth Models (LCGM) were used to analyze longitudinal data captured using Cancer Communication Assessment Tool for Patients and Families (CCAT-PF) and the association with participant characteristics. RESULTS: White patient-caregiver dyads demonstrated decreased communication concordance and African American dyads demonstrated increased communication concordance over time. Lower communication concordance was found among dyads with lower levels of education and income, and cancers diagnosed at more advanced stages; these relationships were stable over time. Modeling identified the presence of three distinct communication groups (Stable Concordant (57.4%), Fluctuating Medium Concordant (37.8%), High Discordant (5.4%)) that differed by baseline level of communication concordance, patterns of concordance over time, race, income and the dyad relationship. CONCLUSIONS: Patient-caregiver cancer communication concordance was not static overtime. Results suggest the presence of a new dyadic cancer communication typology that could help preemptively identify dyads at risk for communication difficulties that impede treatment decision making.


Asunto(s)
Cuidadores/psicología , Comunicación , Neoplasias Hematológicas/psicología , Adulto , Anciano , Familia , Femenino , Neoplasias Hematológicas/terapia , Humanos , Análisis de Clases Latentes , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Virginia
10.
Clin Transplant ; 34(11): e14071, 2020 11.
Artículo en Inglés | MEDLINE | ID: mdl-32885456

RESUMEN

With the emergence of vascularized composite allografts (VCAs) for transplantation, donation professionals' ability to obtain authorization for these anatomical gifts has become paramount for its continued practice. Our national study examines the experience of organ procurement organization (OPO) professionals responsible for presenting the opportunity to donate VCAs to families of deceased donor-eligible patients. Semi-structured telephone interviews conducted with 157 OPO staff assessed experience with VCA discussions, VCA knowledge, and comfort, confidence, and feeling prepared with discussions about different VCA types. Standard procedures were used to code and analyze the qualitative data and summarize the quantitative data. Most respondents (70.1%) never held a VCA donation discussion, but those with experience reported overall low levels of knowledge, comfort, and confidence talking with families about VCA. Although 44.4% of the sample had VCA-related training, many felt unprepared, with most (75.0%) stating the training was insufficient. Participants without experience indicated even lower ratings of the aforementioned constructs. Findings support extant work demonstrating that no standardized procedures exist for VCA donation discussions; however, donation professionals are willing to adopt new VCA-related skills. This report concludes that sustained and content-specific training will elevate donation professionals' ability to augment the supply of VCAs available for transplantation.


Asunto(s)
Aloinjertos Compuestos , Obtención de Tejidos y Órganos , Alotrasplante Compuesto Vascularizado , Actitud , Humanos , Donantes de Tejidos
11.
J Med Internet Res ; 22(1): e15793, 2020 01 13.
Artículo en Inglés | MEDLINE | ID: mdl-31929102

RESUMEN

BACKGROUND: As an overrepresented population on the transplant waitlist, stagnated rates of organ donation registration among Latinxs must be redressed. Promotoras (community health workers), who are effective at advocating and spearheading health promotion efforts in the Latinx community, show promise in their ability to educate about organ donation and donor registration. OBJECTIVE: This study aimed (1) to develop an interactive, evidence-based program to educate promotoras about organ donation, the need for organ donors in the Latinx American community, and ways to register as deceased organ donors and (2) to train promotoras to lead discussions about organ donation and to promote the act of donor registration. METHODS: In partnership with 4 promotoras organizations, the culturally targeted Promotoras de Donación eLearning module was developed based on input from 12 focus groups conducted with Latina women (n=61) and promotoras (n=37). Formative work, existing literature, the Vested Interest Theory, and the Organ Donation Model guided curriculum development. In partnership with the Gift of Life Institute and regional promotoras, the curriculum was designed, filmed, and developed in a visually appealing module interface. The module was beta-tested with promotoras before launch. RESULTS: Promotoras de Donación, available in Spanish with English subtitling, lasts just over an hour. The module comprised 6 sections including various activities and videos, with the curriculum divided into a skills-based communication component and a didactic educational component. Pre- and posttests assessed the module's direct effects on promotoras' organ donation knowledge and attitudes as well as confidence promoting the act of donor registration. CONCLUSIONS: This novel, theoretically and empirically based intervention leveraged the existing network of promotoras to promote the act of donor registration. Future research should assess whether the module helps increase rates of donor registration within Latinx communities and reduce disparities in access to transplantation. TRIAL REGISTRATION: ClinicalTrials.gov NCT04007419; https://www.clinicaltrials.gov/ct2/show/NCT04007419.


Asunto(s)
Evaluación de Programas y Proyectos de Salud/métodos , Telemedicina/métodos , Obtención de Tejidos y Órganos/métodos , Femenino , Hispánicos o Latinos , Humanos , Masculino , Persona de Mediana Edad
12.
Sociol Health Illn ; 41(8): 1520-1534, 2019 11.
Artículo en Inglés | MEDLINE | ID: mdl-31225650

RESUMEN

Based on audio recordings of consultations in three U.S. paediatric multidisciplinary Disorders of Sex Development-Intersex clinics, we examine the process of gender assignment of children with "atypical" genitalia. Rather than fully determined by the presence of biological sex traits, the gender assignment discussion hinges on how clinician and parent collaboratively imagine different aspects of what constitutes being a gendered person. They orient towards the potential for sexual intimacy, fertility, gender dysphoria, stigma, and gonadal cancer risk. While these futures remain inherently uncertain, clinicians and parents plan to mobilise gender socialisation and medical interventions to render their choice of gender a self-fulfilling prophecy. Gender destinies capture that the child always had a specific, innate gender awaiting discovery, and presumes a project for medical and social monitoring, intervention, correction, and optimisation.


Asunto(s)
Toma de Decisiones , Trastornos del Desarrollo Sexual/cirugía , Identidad de Género , Padres/psicología , Incertidumbre , Adulto , Preescolar , Trastornos del Desarrollo Sexual/diagnóstico , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Estigma Social
13.
Cancer ; 124(13): 2824-2831, 2018 07 01.
Artículo en Inglés | MEDLINE | ID: mdl-29660822

RESUMEN

BACKGROUND: The current study was performed to characterize the employment status of survivors of hematological cancer who have an informal caregiver from the time of diagnosis through the first 6 months of treatment. METHODS: Using a mixed methods approach, semistructured interviews with survivors of hematological cancer were conducted within 6 months of the initiation of cancer treatment. Interviews assessed cancer treatment status, barriers and facilitators to employment, financial and insurance status, and relationship with the primary caregiver. These results are part of a longitudinal study of cancer survivors and informal caregivers. RESULTS: A total of 171 patients were enrolled. Within 6 months of beginning cancer treatments, approximately 35% were no longer employed. Reasons to remain employed included financial need, employee benefits, and a sense of purpose and normalcy. Employer accommodations and supportive colleagues facilitated continued employment. Logistic regression analysis demonstrated that having a higher household income, a desire to work, nonphysical job tasks, and congruent survivor-caregiver communication were associated with greater odds of remaining employed. CONCLUSIONS: Within 6 months of initiating cancer treatment, the majority of survivors of hematological cancer had maintained employment. Because of the limitations imposed by the physical stress of cancer treatments, as well as the need to maintain employment to continue receiving employee benefits to cover such treatments, survivors of hematological cancer likely would benefit from employment accommodations that are sensitive to their unique needs. Cancer 2018;124:2824-2831. © 2018 American Cancer Society.


Asunto(s)
Supervivientes de Cáncer/psicología , Cuidadores/estadística & datos numéricos , Empleo/estadística & datos numéricos , Neoplasias Hematológicas/terapia , Adaptación Psicológica , Adulto , Anciano , Supervivientes de Cáncer/estadística & datos numéricos , Empleo/psicología , Femenino , Neoplasias Hematológicas/mortalidad , Neoplasias Hematológicas/psicología , Humanos , Renta/estadística & datos numéricos , Cobertura del Seguro/estadística & datos numéricos , Seguro de Salud/estadística & datos numéricos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Ajuste Social , Estados Unidos
14.
Hum Genet ; 137(1): 63-71, 2018 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-29204889

RESUMEN

Tissues from deceased donors provide important data for genomic research and Organ Procurement Organizations (OPOs) play a significant role. To understand the decisions of families who donated for transplantation and made decisions about donation to the Genotype-Tissue Expression Project (GTEx), we examined donation decisions of family decision makers (FDMs). 413 families were interviewed by telephone. The OPO staff who made the transplant and research requests completed self-administered surveys; a total of 309 matching surveys from 99 OPO staff were obtained. 76.8% of families donated to the GTEx project. Logistic regression analysis found that FDM consent to GTEx donation was associated with endorsement of policies to promote biobanking (OR = 1.35), positive attitudes about medical research (OR = 1.1), lack of concern regarding a breach of confidentiality (OR = 1.54), comfort with tissue donation (OR = 1.24), and prior authorization to solid organ donation (OR = 3.17). OPO staff characteristics associated with GTEx donation included being female (OR = 3.57), White (OR = 4.97), comfort with hospital staff role in donation (OR = 1.61), and number of topics discussed with families (OR = 57.9). Donor type, FDM attitudes, OPO staff sociodemographics, OPO comfort with the GTEx authorization process, and intensity of discussing research-specific issues were significantly associated with GTEx donation decisions.


Asunto(s)
Bancos de Muestras Biológicas/ética , Investigación Genética/ética , Obtención de Tejidos y Órganos/ética , Adulto , Anciano , Bancos de Muestras Biológicas/legislación & jurisprudencia , Investigación Biomédica/ética , Investigación Biomédica/legislación & jurisprudencia , Toma de Decisiones/ética , Femenino , Investigación Genética/legislación & jurisprudencia , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Persona de Mediana Edad , Factores Socioeconómicos , Donantes de Tejidos/psicología , Obtención de Tejidos y Órganos/legislación & jurisprudencia
15.
Prog Transplant ; 28(1): 12-18, 2018 03.
Artículo en Inglés | MEDLINE | ID: mdl-29592635

RESUMEN

BACKGROUND: There is a discrepancy between the reported increase in donor conversion rates and the number of organs available for transplant. METHODS: Secondary analysis of data obtained from the Scientific Registry of Transplant Recipients from January 2003 through December 2015 was performed. The primary outcomes were the (1) number of brain-dead donors from whom solid organs were recovered and (2) number of the organs transplanted. Descriptive statistics and growth plots were used to examine the trajectory of organ donation, recovery, and transplantation outcomes over the 11-year period. RESULTS: From 2003 to 2006, the number of brain-dead donors increased from 6187 to 7375, remaining relatively stable at approximately 7200 thereafter. The average eligible deaths per organ procurement organization dropped from 182.7 (standard deviation [SD]: 131.3) in 2003 to 149.3 (SD: 111.4) in 2015. This suggests a total of 12 493 unrealized potential donors (2006-2015). CONCLUSIONS: Since 2006, a steady decline in the number of donor-eligible deaths was reported. In 2003, the reported eligible deaths was 11 326. This number peaked in 2004 at 11 346, tumbling to 9781 eligible donors in 2015, despite a 9% increase in the US population. From 2006 to 2015, the data indicate an artificial depression and underestimation of the true potential of brain-dead donors in the United States of conservatively 12 493 donors or 39 728 missing organs. New metrics providing objective but verifiable counts of the donor pool are needed.


Asunto(s)
Trasplante de Órganos/estadística & datos numéricos , Trasplante de Órganos/tendencias , Donantes de Tejidos/provisión & distribución , Donantes de Tejidos/estadística & datos numéricos , Obtención de Tejidos y Órganos/estadística & datos numéricos , Obtención de Tejidos y Órganos/tendencias , Predicción , Humanos , Sistema de Registros , Estados Unidos
16.
J Clin Ethics ; 29(1): 20-30, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-29565794

RESUMEN

Genomic research projects that collect tissues from deceased organ and tissue donors must obtain the authorization of family decision makers under difficult circumstances that may affect the authorization process. Using a quasi-experimental design, the Ethical, Legal, and Social Issues (ELSI) substudy of the Genotype-Tissue Expression (GTEx) project compared the recall and understanding of the donation authorization process of two groups: family members who had authorized donation of tissues to the GTEx project (the comparison group) and family members who had authorized organ and tissue donations in years previous, who subsequently participated in two different mock-authorization processes that mimicked the GTEx authorization process (the intervention groups). Participants in the comparison and intervention groups were matched on key demographic characteristics. We found that participants in the intervention groups who experienced a mock-authorization process demonstrated better recall of the tissue donation request than members of the comparison group. Our data indicate that the stress associated with the loss of a loved one limited the ability of family members to recall details about the GTEx project. However, we found a similar lack of knowledge in both the comparison and the intervention group participants, suggesting lack of knowledge may be due to the complexity and unfamiliarity of the information presented to them during the authorization process. We discuss these findings in the context of everyday clinical decision making in cognitively challenging conditions.


Asunto(s)
Cognición , Toma de Decisiones , Familia , Recuerdo Mental , Obtención de Tejidos y Órganos , Femenino , Investigación Genética/ética , Humanos , Masculino , Persona de Mediana Edad , Consentimiento por Terceros
17.
Br J Cancer ; 116(12): 1638-1642, 2017 Jun 06.
Artículo en Inglés | MEDLINE | ID: mdl-28463963

RESUMEN

BACKGROUND: Appraisal delay (AD) refers to the time interval between onset of symptoms and the date a patient first seeks healthcare. Because studies have shown that individuals who are overweight or obese may delay or avoid seeking healthcare due to stigma, this study aims to investigate the role that weight plays in AD among symptomatic individuals subsequently diagnosed with colorectal cancer (CRC). METHODS: Structural equation modelling tested the relationship between AD, body mass index (BMI), financial barriers, cognitive barriers, and reported symptoms among 179 newly diagnosed CRC patients in two U.S. healthcare systems. RESULTS: BMI was directly and significantly related to AD (ß=0.10; P=0.044) and to cognitive barriers (ß=0.24; P=0.005). Cognitive barriers were direct and significant predictors of increased AD (ß=0.32; P=0.000). Symptom experience and financial barriers were mediated through cognitive barriers. CONCLUSIONS: Model results support the hypothesis that increased BMI is significantly and directly associated with increased AD and key cognitive barriers relevant to care-seeking behaviour.


Asunto(s)
Índice de Masa Corporal , Neoplasias Colorrectales/diagnóstico , Diagnóstico Tardío/psicología , Modelos Teóricos , Obesidad/psicología , Aceptación de la Atención de Salud , Anciano , Peso Corporal , Estudios Transversales , Miedo , Femenino , Conductas Relacionadas con la Salud , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Persona de Mediana Edad
18.
Genet Med ; 18(1): 82-8, 2016 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-25856669

RESUMEN

PURPOSE: There are many ethical considerations regarding the return of genetic results to biobanking participants, especially when biobanks collect samples from deceased organ and tissue donors that require the authorization of a family decision maker (FDM). This article explores FDM knowledge and opinions regarding return of genetic results in the context of the Genotype-Tissue Expression (GTEx) Project, which does not return results to participants. METHODS: Data collection included a survey completed by Organ Procurement Organization requesters (n = 22) and semistructured telephone interviews with FDM (n = 55). RESULTS: Nearly every FDM wanted some form of genetic results returned. Information regarding treatable diseases (94.3%) and diseases that could affect their children (84.9%) were more desirable than that regarding untreatable diseases (71.7%). Sixty percent of FDMs understood that GTEx would not return genetic results. FDMs were four times more likely to have correct knowledge of the GTEx policy when their GTEx requester reported discussing the topic with them. CONCLUSION: FDMs from the GTEx project were interested in receiving genetic test results. Marked changes in the infrastructure of the GTEx would be required to alter the policy. Regardless, care must be taken to ensure that the return policy is clearly communicated with FDMs to dispel misconceptions.Genet Med 18 1, 82-88.


Asunto(s)
Bancos de Muestras Biológicas/ética , Toma de Decisiones/ética , Familia/psicología , Adulto , Actitud , Comprensión , Femenino , Pruebas Genéticas , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Donantes de Tejidos/ética , Donantes de Tejidos/psicología
19.
Health Commun ; 31(3): 308-19, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-26325602

RESUMEN

The initial moments of conversations, particularly discussions addressing difficult or unexpected health topics, establish the context and tone of the entire discussion. We examined how elements of relational and instrumental communication occurring within the first five minutes of the request impacted the length of the discussion. A sample of 16 U.S. tissue banking organizations and their staff (n = 226) making telephone requests for donation to families of tissue-donation eligible patients (n = 1,465) agreed to participate in the research. The first five minutes of 430 (29.4%) audiorecorded request conversations were qualitatively coded and analyzed. The primary outcome measure was whether the conversation continued beyond the first five minutes (yes/no). Aspects of both relational and instrumental communication were associated with discussion length. A logistic regression analysis found that the total number of distinct topics disclosed and requesters' vocal affect during the discussion as well as characteristics of the family member approached about donation predicted conversational maintenance. This research demonstrates that "thin slices" of effective relational and instrumental communication can have a significant, positive impact on conversation length.


Asunto(s)
Comunicación en Salud , Relaciones Profesional-Familia , Donantes de Tejidos/psicología , Obtención de Tejidos y Órganos/métodos , Adulto , Conducta de Elección , Familia , Femenino , Humanos , Entrevistas como Asunto , Modelos Logísticos , Masculino , Persona de Mediana Edad , Factores de Tiempo , Bancos de Tejidos , Estados Unidos
20.
Prog Transplant ; 26(3): 241-8, 2016 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-27323955

RESUMEN

CONTEXT: Few systematic assessment tools are available to organ procurement organizations (OPOs) for evaluating donation climates of hospitals in their donation service areas (DSAs). The Rapid Assessment of hospital Procurement barriers in Donation (RAPiD) was developed for OPO hospital development staff to assess the organ donation climate of hospitals. OBJECTIVE: To implement a national test of the RAPiD to examine its efficacy and usability by OPO hospital development staff. DESIGN: Two-arm randomized design, comparing implementation of RAPiD protocol between qualitatively trained researchers (n = 7) and OPO hospital development staff (n = 24); all evaluators received the same training assessments of high-yield hospitals. SETTING: A total of 77 hospitals in DSAs of 8 OPOs. PARTICIPANTS: A total of 2552 health-care providers (HCPs) in high organ donor potential units. MAIN OUTCOME MEASURES: Twenty-four donation-related attitudes, knowledge, and behaviors. RESULTS: More HCPs interviewed in the autonomous condition were positive toward the concept of organ donation. However, HCPs in the assisted condition were more candid about and critical of the OPO. As for knowledge, fewer HCPs in the autonomous condition reported familiarity with the donation process, need for donors, and generally accepted timely referral criteria. With respect to behaviors, more respondents in the autonomous condition reported frequent or occasional contact with the OPO and routine or occasional referral criteria use. Due to issues of bias, inadequate research experience, conflicts of interest, and ongoing OPO hospital development initiatives, the RAPiD's usability by OPO-based hospital development staff is questionable and not recommended in its current form. A next generation of the RAPiD is described for future consideration.


Asunto(s)
Personal de Hospital , Derivación y Consulta , Obtención de Tejidos y Órganos , Actitud , Humanos , Cultura Organizacional , Donantes de Tejidos
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