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1.
Pediatr Blood Cancer ; 71(2): e30786, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38053232

RESUMO

BACKGROUND: Young adulthood brings new challenges for managing sickle cell disease. There are fewer adult specialists, sickle cell disease morbidities accumulate, and mortality increases. Developmental changes in roles and responsibilities also affect management. This study explores how young adults with sickle cell disease experience their role as a patient. METHODS: In this mixed-methods study at a sickle cell center, young adult participants completed the Sickle Cell Self Efficacy Survey, the Measures of Sickle Cell Stigma, and the Adult Sickle Cell Quality of Life Measurement Short-Forms. Semi-structured interviews on the patient role were conducted, transcribed, and then analyzed using thematic analysis. RESULTS: Twenty-four participants aged 19-25 years defined expectations of being a "good patient." Five definitional themes emerged: health maintenance, emotion regulation, self-advocacy, honest communication, and empathy for clinicians. Participants identified support from families and clinicians are important facilitators of role fulfillment. DISCUSSION: How young adult patients with sickle cell disease define being a "good patient" has implications for the transition of care for both pediatric and adult medicine practices. This understanding can inform healthcare system designs and programs aimed at supporting patients and families.


Assuntos
Anemia Falciforme , Qualidade de Vida , Humanos , Criança , Adulto Jovem , Adulto , Anemia Falciforme/terapia , Atenção à Saúde , Empatia , Inquéritos e Questionários
3.
J Infect Public Health ; 15(10): 1053-1060, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-36063721

RESUMO

Long-term adherence to antiretroviral medication continues to present as a challenge along the continuum of the HIV care cascade. HIV interventions and support programs are significantly threatened in resource-limited settings by challenges in maintaining long-term follow-up for ART adherence. We sought to complete a systematic review to comprehensively examine ART adherence and retention in care interventions in Sub-Saharan Africa and to report on the implementation of interventions in real-world settings to inform future health investments in HIV care. Interventions were grouped according to their impact on individual, community, and health-systems levels. While a vast majority of studies evaluated a combination of interventions, those studies that incorporated the community as a resource were most successful. In addition, providing education and behavior reminders proved effective and should be accompanied by community and peer efforts for best results. Multi-level interventions, such as combining individual and community-level interventions showed promising results for long term ART adherence.


Assuntos
Infecções por HIV , Humanos , Infecções por HIV/tratamento farmacológico , Países em Desenvolvimento , Adesão à Medicação , Antirretrovirais/uso terapêutico , África Subsaariana
5.
Development ; 148(5)2021 03 09.
Artigo em Inglês | MEDLINE | ID: mdl-33526582

RESUMO

Cereal grain develops from fertilised florets. Alterations in floret and grain development greatly influence grain yield and quality. Despite this, little is known about the underlying genetic control of these processes, especially in key temperate cereals such as barley and wheat. Using a combination of near-isogenic mutant comparisons, gene editing and genetic analyses, we reveal that HvAPETALA2 (HvAP2) controls floret organ identity, floret boundaries, and maternal tissue differentiation and elimination during grain development. These new roles of HvAP2 correlate with changes in grain size and HvAP2-dependent expression of specific HvMADS-box genes, including the B-sister gene, HvMADS29 Consistent with this, gene editing demonstrates that HvMADS29 shares roles with HvAP2 in maternal tissue differentiation. We also discovered that a gain-of-function HvAP2 allele masks changes in floret organ identity and grain size due to loss of barley LAXATUM.A/BLADE-ON-PETIOLE2 (HvBOP2) gene function. Taken together, we reveal novel pleiotropic roles and regulatory interactions for an AP2-like gene controlling floret and grain development in a temperate cereal.


Assuntos
Proteínas de Homeodomínio/metabolismo , Hordeum/metabolismo , Proteínas de Domínio MADS/metabolismo , Proteínas de Plantas/metabolismo , Alelos , Sequência de Bases , Sistemas CRISPR-Cas/genética , Grão Comestível/anatomia & histologia , Grão Comestível/metabolismo , Flores/crescimento & desenvolvimento , Flores/metabolismo , Edição de Genes , Regulação da Expressão Gênica de Plantas , Genótipo , Proteínas de Homeodomínio/química , Proteínas de Homeodomínio/genética , Hordeum/crescimento & desenvolvimento , Proteínas de Domínio MADS/genética , Mutagênese , Fenótipo , Proteínas de Plantas/química , Proteínas de Plantas/genética , Fatores de Transcrição/genética , Fatores de Transcrição/metabolismo
6.
MedEdPORTAL ; 16: 11014, 2020 11 12.
Artigo em Inglês | MEDLINE | ID: mdl-33204838

RESUMO

Introduction: While medical school curricula increasingly address health disparities, content regarding health care for persons impacted by incarceration is a persistent and notable gap. There is a high burden of disease among incarcerated populations, and health care challenges continue postincarceration. We developed a course to introduce medical students to the current landscape of mass incarceration in the US and implications for health and health care delivery to people impacted by this system. Methods: We developed a 3.5-hour elective course taken by 19 first-year medical students in its first year and 20 students in its second. The course utilized lecture, case-based discussion, and guest speaker modalities to introduce students to the history of mass incarceration, health care delivery within the carceral system, and challenges in accessing care during and following incarceration. Results: Students received two surveys after completing the course. In the first, 100% of respondents reported outstanding, excellent, or good levels of satisfaction with various elective components, including organization, learning activities, and student discussion. The second found significant increases in knowledge about mass incarceration and incarceration health issues, in addition to significant increases in interest in advocating or providing health care for incarcerated populations. Discussion: Given current mass incarceration practices, students will encounter patients impacted by this system. This elective course sought to better prepare students to effectively care for these patients. We were limited by time availability, and future directions include incorporating a standardized patient exercise, trauma-informed care principles, and providers working within the carceral system.


Assuntos
Estudantes de Medicina , Currículo , Atenção à Saúde , Humanos , Aprendizagem , Inquéritos e Questionários
7.
Age Ageing ; 48(3): 319-322, 2019 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-30794308

RESUMO

One in five people in the UK live with lung disease. The National Taskforce for Lung Health, supported by 29 organisations, published its report in December 2018 with 43 recommendations for the UK, most of which are highly relevant to older adults. Prevention is key, especially relating to the introduction of clean air zones and air pollution alerts. Older adults may be even more prone to the adverse effects of particulate matter. Earlier and accurate diagnosis could improve survival for lung cancer, as well as health status for patients with chronic obstructive pulmonary disease (COPD) and related conditions. Currently, less than half of patients on inhalers receive an annual check, and there are one in five patients with COPD who should be on home oxygen but are not. By contrast, one in three people on oxygen do not benefit. Social isolation is common in people with lung disease, who would benefit from a personalised care plan and better access to pulmonary rehabilitation, which is also of benefit to those who are frail. Patients with lung diseases are much less likely to have conversations about advance care planning than in other conditions, probably because of the unpredictable nature of their illness, and variability of symptoms. The taskforce recommends that all healthcare professionals should be able to offer basic end of life advice.


Assuntos
Pneumopatias/epidemiologia , Idoso , Humanos , Pneumopatias/prevenção & controle , Neoplasias Pulmonares/epidemiologia , Neoplasias Pulmonares/prevenção & controle , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/epidemiologia , Reino Unido/epidemiologia
8.
BMJ Case Rep ; 20172017 Dec 28.
Artigo em Inglês | MEDLINE | ID: mdl-29288227

RESUMO

Endobronchial metastasis occurs in only 2%-5% of non-pulmonary cancers. Here we report on an 84-year-old woman who presented with breathlessness and light-headedness while on holiday in Australia, 2 years post-treatment for endometrial cancer. Initial CT pulmonary angiogram identified a soft tissue mass in the left hemithorax. A chest radiograph performed after repatriation was consistent with a large left pleural effusion, but bedside ultrasound showed a lobulated mass involving the left hemidiaphragm. A pleural procedure in the traditional 'triangle of safety' would have resulted in inadvertent puncture of the underlying mass. Serial imaging confirmed the mass was rapidly progressing, and metastatic malignant mixed Mullerian endometrial carcinoma was diagnosed by endobronchial biopsy. A tunnelled intrapleural catheter was inserted for symptom relief, and the patient deteriorated and died at home 2 weeks later. To our knowledge, this is the first case of endobronchial metastasis from malignant mixed Mullerian tumour of the uterus.


Assuntos
Neoplasias Brônquicas/secundário , Neoplasias do Endométrio/patologia , Tumor Mulleriano Misto/secundário , Idoso de 80 Anos ou mais , Biópsia , Neoplasias Brônquicas/diagnóstico por imagem , Cateteres de Demora , Dispneia/etiologia , Evolução Fatal , Feminino , Humanos , Tumor Mulleriano Misto/diagnóstico por imagem , Tomografia Computadorizada por Raios X
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