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1.
Public Health Genomics ; 26(1): 77-89, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37487468

RESUMO

INTRODUCTION: Encouraging family communication about possible genetic risk has become among the most important avenues for achieving the full potential of genomic discovery for primary and secondary prevention. Yet, effective family-wide risk communication (i.e., conveying genetic risk status and its meaning for other family members) remains a critical gap in the field. We aim to describe the iterative process of developing a scalable population-based communication outreach intervention, Your Family Connects, to reach ovarian cancer survivors and close relatives to communicate the potential for inherited risk and to consider genetic counseling. METHODS: Relational-level theories (e.g., interdependence theory) suggest that interventions to promote family cancer risk communication will be most effective if they consider the qualities of specific relationships and activate motives to preserve the relationship. Informed by these theories, we collaborated with 14 citizen scientists (survivors of ovarian cancer or relatives) and collected 261 surveys and 39 structured interviews over 12 weeks of citizen science activities in 2020. RESULTS: The citizen science findings and consideration of relational-level theories informed the content and implementation of Your Family Connects (www.yourfamilyconnects.org). CS results showed survivors favor personal contact with close relatives, but relatives were open to alternative contact methods, such as through health professionals. Recognizing the need for varied approaches based on relationship dynamics, we implemented a relative contact menu to enable survivors identify at-risk relatives and provide multiple contact options (i.e., survivor contact, health professional contact, and delayed contact). In line with relational autonomy principles, we included pros and cons for each option, assisting survivors in choosing suitable contact methods for each relative. DISCUSSION: Our developed intervention represents a novel application of relational-level theories and partnership with citizen scientists to expand genetic services reach to increase the likelihood for fair distribution of cancer genomic advances. The Your Family Connects intervention as part of a randomized trial in collaboration with the Georgia Cancer Registry compared with standard outreach.


Assuntos
Sobreviventes de Câncer , Neoplasias Ovarianas , Humanos , Feminino , Neoplasias Ovarianas/genética , Sobreviventes , Aconselhamento Genético , Comunicação , Família
2.
Open Forum Infect Dis ; 9(7): ofac310, 2022 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-35891689

RESUMO

The ongoing 2022 multicountry outbreak of monkeypox is the largest in history to occur outside of Africa. Monkeypox is an emerging zoonotic disease that for decades has been viewed as an infectious disease with significant epidemic potential because of the increasing occurrence of human outbreaks in recent years. As public health entities work to contain the current outbreak, healthcare professionals globally are aiming to become familiar with the various clinical presentations and management of this infection. We present in this review an updated overview of monkeypox for healthcare professionals in the context of the ongoing outbreaks around the world.

3.
J Cancer Educ ; 37(3): 779-787, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-32978725

RESUMO

Multiple myeloma (MM) is an incurable cancer characterized by abnormal plasma cells in the bone marrow, resulting in increased risk of infection. Autologous stem cell transplant (ASCT) is the most effective treatment for MM, but successful transplant requires the patient and caregiver to learn and independently implement medical tasks. The Ready for Transplant (R4T) ethnographic-based formative evaluation includes evaluation of ongoing patient education and the addition of novel supplemental educational videos that patients can review before in-person transplant education. To evaluate R4T, a formative evaluation informed by utilization-orientated evaluation theories, including over 150 hours of ethnographic observation of nurse/patient education (N = 70), plus retrospective and prospective patient (N = 35) and clinician interviews (N = 7) was conducted over 18 months. Through thematic analysis, barriers and facilitators of the patient's ability to process education surrounding ASCT were identified. Barriers included anxiety surrounding what to expect in ASCT, anxiety surrounding what to expect at the education visit, overwhelming volume of information, lack of medical expertise, and disengaged patients, while facilitators included large social networks willing to help and clinician adjusting script to meet unique needs of the patient. This manuscript represents an iterative method for improving on education that people with MM receive surrounding ASCT. Ultimately, the supplemental video-based education was created to address modifiable social and psychological factors by providing generalized information that could then be tailored during in-person meetings to meet each patients' individual needs.


Assuntos
Educação Médica , Transplante de Células-Tronco Hematopoéticas , Mieloma Múltiplo , Transplante de Células-Tronco Hematopoéticas/métodos , Humanos , Mieloma Múltiplo/etiologia , Mieloma Múltiplo/terapia , Estudos Prospectivos , Estudos Retrospectivos
4.
Patient Educ Couns ; 105(7): 2027-2032, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-34887157

RESUMO

OBJECTIVE: To determine in what ways, if any, do patients, caregivers, and nurses make videos relevant during in-person education. METHODS: We applied conversation analysis to analyze interaction in 12 nurse-led education visits (1011 min of audio) in which speakers referred to a supplemental education video. RESULTS: Patients initiated talk about the video in about half of the clinic visits analyzed, while nurses initiated talk about the video across all clinic visits analyzed. Interactions showed that patients demonstrated knowledge of video content and clarified information concerning their treatment plans by asking questions of nurses. Nurses referenced the video prior to repeating information that they recognized patients had viewed. In all instances analyzed, nurses made references to the videos in ways that re-oriented conversations back toward the content of the informal scripts that they used to deliver patient education. CONCLUSION: Patients referenced the video in ways that demonstrated that they had viewed it and had gained knowledge concerning treatment plans, and to ask specific questions about these. Nurses referred to the videos by acknowledging patients' prior knowledge of upcoming information. PRACTICE IMPLICATIONS: Understanding how pre-delivered supplemental videos impact patient involvement in in-person education contributes understanding to how video-based instruction supports patient-centered care.


Assuntos
Comunicação , Educação Médica , Cuidadores , Humanos , Participação do Paciente , Assistência Centrada no Paciente , Gravação em Vídeo
5.
Glob Qual Nurs Res ; 8: 23333936211012990, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34104680

RESUMO

The conversation strategies patients and clinicians use are important in determining patient satisfaction and adherence, and health outcomes following patient education-yet most studies are rife with surveys and interviews which often fail to account for real-time interaction. Conversation analysis (CA) is a powerful but underused sociological and linguistic technique aimed at understanding how interaction is accomplished in real-time. In the current manuscript, we provide a primer to CA in an effort to make the technique accessible to patient education researchers including; The history of CA, identifying and collecting data, transcription conventions, data analysis, and presenting the findings. Ultimately, this article provides an easily digestible demonstration of this analytic technique.

6.
J Patient Exp ; 8: 2374373521998864, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34179409

RESUMO

In the current study, we sought to examine whether patients incorporate the identity of a patient receiving autologous stem cell transplant (ASCT) for multiple myeloma (MM) into their daily lives. Multiple myeloma patients receive education before initiating the ASCT treatment process. In this ethnographic study using interpretative phenomenological analysis, we observed pretransplant education visits with 30 MM patients, followed by semistructured interviews in their hospital rooms during transplant. The experience of receiving ASCT for MM required effort by patients to not only maintain their past identity but also establish a new patient identity. Reconciling these 2 identities required deliberate and emotionally draining effort from the patient. Results were organized into 2 overarching themes of social relationships and aesthetics with subthemes for each. Understanding methods MM patients who are receiving ASCT use to negotiate normalcy during treatment may be helpful for developing interventions for alleviating distress during this difficult time.

7.
Transplantation ; 100(3): 630-9, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26714121

RESUMO

BACKGROUND: Despite a significant survival advantage of kidney transplantation compared with dialysis, nearly one third of end-stage renal disease (ESRD) patients are not educated about kidney transplantation as a treatment option at the time of ESRD diagnosis. Access to individualized, evidence-based prognostic information is needed to facilitate and encourage shared decision making about the clinical implications of whether to pursue transplantation or long-term dialysis. METHODS: We used a national cohort of incident ESRD patients in the US Renal Data System surveillance registry from 2005 to 2011 to develop and validate prediction models for risk of 1- and 3-year mortality among dialysis versus kidney transplantation. Using these data, we developed a mobile clinical decision aid that provides estimates of risks of death and survival on dialysis compared with kidney transplantation patients. RESULTS: Factors included in the mortality risk prediction models for dialysis and transplantation included age, race/ethnicity, dialysis vintage, and comorbidities, including diabetes, hypertension, cardiovascular disease, and low albumin. Among the validation cohorts, the discriminatory ability of the model for 3-year mortality was moderate (c statistic, 0.7047; 95% confidence interval, 0.7029-0.7065 for dialysis and 0.7015; 95% confidence interval, 0.6875-0.7155 for transplant). We used these risk prediction models to develop an electronic, user-friendly, mobile (iPad, iPhone, and website) clinical decision aid called iChoose Kidney. CONCLUSIONS: The use of a mobile clinical decision aid comparing individualized mortality risk estimates for dialysis versus transplantation could enhance communication between ESRD patients and their clinicians when making decisions about treatment options.


Assuntos
Comportamento de Escolha , Computadores de Mão , Sistemas de Apoio a Decisões Clínicas/instrumentação , Técnicas de Apoio para a Decisão , Falência Renal Crônica/terapia , Transplante de Rim , Aplicativos Móveis , Seleção de Pacientes , Diálise Renal , Adulto , Idoso , Idoso de 80 Anos ou mais , Comunicação , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Incidência , Falência Renal Crônica/diagnóstico , Falência Renal Crônica/mortalidade , Transplante de Rim/efeitos adversos , Transplante de Rim/mortalidade , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Participação do Paciente , Relações Médico-Paciente , Sistema de Registros , Diálise Renal/efeitos adversos , Diálise Renal/mortalidade , Medição de Risco , Fatores de Risco , Design de Software , Estados Unidos/epidemiologia , Adulto Jovem
8.
J Immunol ; 191(4): 1957-64, 2013 Aug 15.
Artigo em Inglês | MEDLINE | ID: mdl-23858029

RESUMO

Current models of CD4(+) T cell help suggest a major role for CD154 binding to CD40 expressed on dendritic cells, with a lesser role for direct T:T interactions via CD40 expressed on CD8(+) T cells. However, the contribution of CD8(+) T cell-derived CD40 signals during the donor-reactive T cell response to a transplant has never been studied. In this study, we examined the graft-rejection kinetics and CD4(+) and CD8(+) donor-reactive T cell responses under conditions in which CD40 was genetically ablated only on APC, as well as under conditions in which CD40 was genetically ablated only on donor-reactive CD8(+) T cells. Our results revealed a significant role for CD8(+) T cell-expressed CD40 in the augmentation of donor-reactive CD8(+) T cell responses following transplantation and showed that CD40 expressed on CD8(+) T cells must be inhibited to allow conversion of CD4(+) T cells into induced regulatory T cells. Thus, this study identifies a major role for CD8(+) T cell-derived CD40 signals as a critical switch factor that both promotes optimal differentiation of cytokine-producing CD8(+) effector T cell responses and inhibits the differentiation of Ag-specific Foxp3(+) induced regulatory T cells in vivo.


Assuntos
Linfócitos T CD4-Positivos/imunologia , Antígenos CD40/imunologia , Linfócitos T CD8-Positivos/imunologia , Subpopulações de Linfócitos T/imunologia , Linfócitos T Reguladores/imunologia , Tolerância ao Transplante/imunologia , Transferência Adotiva , Aloenxertos , Animais , Apresentação de Antígeno , Antígenos CD40/antagonistas & inibidores , Antígenos CD40/deficiência , Ligante de CD40/antagonistas & inibidores , Ligante de CD40/imunologia , Células Dendríticas/imunologia , Epitopos de Linfócito T/imunologia , Fatores de Transcrição Forkhead/análise , Listeria monocytogenes/genética , Listeria monocytogenes/imunologia , Listeriose/imunologia , Ativação Linfocitária , Camundongos , Camundongos Endogâmicos C57BL , Ovalbumina/genética , Ovalbumina/imunologia , Proteínas Recombinantes/genética , Proteínas Recombinantes/imunologia , Transplante de Pele
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