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1.
JMIR Hum Factors ; 11: e53194, 2024 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-38717809

RESUMO

BACKGROUND: Care partners of people with serious illness experience significant challenges and unmet needs during the patient's treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available. OBJECTIVE: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement. METHODS: An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network. RESULTS: The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period. CONCLUSIONS: A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network.


Assuntos
Internet , Grupo Associado , Apoio Social , Humanos , Cuidadores/psicologia , Masculino , Estado Terminal/psicologia , Feminino
2.
J Ambul Care Manage ; 46(2): 127-138, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36820633

RESUMO

The coproduction learning health system (CLHS) model extends the definition of a learning health system to explicitly bring together patients and care partners, health care teams, administrators, and scientists to share the work of optimizing health outcomes, improving care value, and generating new knowledge. The CLHS model highlights a partnership for coproduction that is supported by data that can be used to support individual patient care, quality improvement, and research. We provide a case study that describes the application of this model to transform care within an oncology program at an academic medical center.


Assuntos
Sistema de Aprendizagem em Saúde , Humanos , Cuidadores , Centros Médicos Acadêmicos , Equipe de Assistência ao Paciente
3.
J Clin Neurosci ; 107: 118-123, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36535218

RESUMO

OBJECTIVES: A carotid web isdefined as an abnormal shelf-like projection of intimal fibrous tissue into the carotid bulb. Its presence may be an under-recognised source of embolic stroke of undetermined source (ESUS). The aim of this study was to investigate its prevalence in previously reported studies. MATERIALS AND METHODS: A systematic literature review of Pubmed, EMBASE, and Scopus was conducted up until the 4/12/2021 using variations of the search terms - 'carotid web' and 'ischemic stroke'. Inclusion criteria were studies reporting carotid web prevalence in an ESUS cohort aged >18 years with adequate imaging. Secondary measures such as age, gender, ethnicity, and laterality were recorded. A meta-analysis of proportions was used to summarise the prevalence of webs along with a random-effects model to calculate the relative risk of ipsilateral and contralateral webs in ESUS. RESULTS: The initial search yielded 361 articles, with 11 remaining post the inclusion and exclusion criteria. A meta-analysis of allage groups yielded a total carotid web prevalence among patients with stroke of unknown cause of 9.58 % (95 % CI 5.62 - 15.85). Carotid webs were more often detected in females (76.5 % ± 22.3 %), and in those of African heritage (58 % ± 39 %). In comparison with patients without an ischemic stroke, there was a significant association found for an ipsilateral carotid web (risk ratio of 2.74 (95 % CI: 2.14 - 3.51)) but no association found for contralateral webs (risk ratio of 1.50 (95 % CI: 0.94 - 2.40)). CONCLUSION: The prevalence of ipsilateral carotid webs associated with ESUS is substantial, and may be more common in females and in individuals of African descent.


Assuntos
AVC Embólico , Embolia Intracraniana , AVC Isquêmico , Acidente Vascular Cerebral , Feminino , Humanos , Prevalência , Artérias Carótidas , Acidente Vascular Cerebral/etiologia , Acidente Vascular Cerebral/complicações , AVC Isquêmico/complicações , Fatores de Risco , Embolia Intracraniana/etiologia
4.
Int J Ophthalmol ; 15(6): 1020-1022, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35814891
8.
Mod Pathol ; 19(7): 907-13, 2006 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-16648872

RESUMO

Neoplastic progression is characterized by clonal expansion of tumor cells associated with accumulation of mutational damage. The timing of mutation acquisition could be of value in distinguishing preneoplastic conditions from early and advanced cancer as well as characterizing tumor aggressiveness and treatment response. Using quantitative methods applied to microdissected cell clusters selected according to cytomorphologic features, we sought to demonstrate the feasibility and efficacy for determining the time and course of mutation accumulation in pancreatobiliary cytology specimens. In all, 40 pancreatic duct and 21 biliary brushing cytology specimens were retrieved from the cytology database. Xylene-resistant markings were placed on the slide underside and coverslips removed. Clusters of benign, atypical and malignant cells were manually microdissected and DNA extracted. Mutations (allelic imbalance) (loss of heterozygosity) were quantitatively determined for a broad panel of 15 markers (1p, 3p, 5q, 9p, 10q, 17p, 17q, 21q, 22q) as well as point mutation in K-ras-2 using PCR/capillary electrophoresis. Time course was based on earlier mutations having a higher proportion of mutant DNA for a particular marker. The descending frequency of detectable mutational involvement in pancreatic cytology was K-ras-2 point mutation (58%), 3p25-26 and 17q21 (35%), 5q23 (33%), 1p36 (28%), followed by the remaining molecular markers. The descending frequency of mutational content in bile duct cytology was 17p13, 1p36, 3p25-26, and 5q23 followed by remaining molecular markers. K-ras-2 point mutation was not seen in bile duct specimens. While there was overlap in the spectrum of mutational markers in pancreatic duct and biliary brushing cytology, the temporal profile was significantly different (P<0.001). Pancreatic and biliary neoplasia progression involves distinct subset of accumulated defined mutations. Determination of timing of the mutational damage in cytologic material could be incorporated in the work-up and help in making a more definitive diagnosis of malignancy in pancreatobiliary cytology specimens.


Assuntos
Neoplasias do Sistema Biliar/genética , Transformação Celular Neoplásica/genética , DNA de Neoplasias/genética , Mutação , Neoplasias Pancreáticas/genética , Neoplasias do Sistema Biliar/patologia , Transformação Celular Neoplásica/patologia , Cromossomos Humanos Par 1/genética , Cromossomos Humanos Par 17/genética , Cromossomos Humanos Par 3/genética , Citodiagnóstico/métodos , Análise Mutacional de DNA , Progressão da Doença , Genótipo , Humanos , Microdissecção , Neoplasias Pancreáticas/patologia , Estudos Retrospectivos , Proteínas ras/genética
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