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1.
J Patient Exp ; 10: 23743735231161486, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36936380

RESUMO

To prevent or mitigate chronic illness burden, people with cystic fibrosis (pwCF) and their family caregivers need primary (generalist-level) palliative care from the time of diagnosis forward. We used qualitative methods to explore their preferences about a screening-and-triage model ("Improving Life with CF") developed to standardize this care. We purposively sampled and interviewed 14 pwCF and caregivers from 5 Improving Life with CF study sites. Thematic analysis was guided by a priori codes using the National Consensus Project's Guidelines for Quality Palliative Care. Participants included 7 adults and 2 adolescents with CF (3 with advanced disease), 4 parents, 1 partner (7 women; 5 people of color). Few were familiar with palliative care. Illness burden was described in multiple domains, including physical (e.g., dyspnea, pain), psychological (e.g., anxiety), and social (e.g., family well-being; impact on work/school). Most preferred survey-based screening with care coordination by the CF team. Preferences for screening approaches varied. PwCF and caregivers experience illness burden and are receptive to a CF-team delivered primary palliative care screening-and-triage model with flexible processes.

2.
J Cyst Fibros ; 21(3): e176-e183, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35256307

RESUMO

BACKGROUND: People with cystic fibrosis (pwCF) may be at risk of complications from COVID-19 but the impact of COVID-19 on pwCF remains unknown. METHODS: We conducted a multicenter retrospective cohort study to assess the impact of the COVID-19 pandemic first wave on pwCF in the New York metropolitan area (NY) from March 1, 2020 to August 31, 2020. Objectives were to determine (1) the prevalence of COVID-19 by PCR and IgG antibody testing, (2) the clinical characteristics of COVID-19, (3) delay in routine outpatient care, and (4) the effect on anxiety and depression in pwCF. RESULTS: There were 26 COVID-19 cases diagnosed by PCR or antibody testing among the study cohort of 810 pwCF. The prevalence of COVID-19 by PCR (1.6%) and IgG antibody (12.2%) testing was low. 58% of cases were asymptomatic and 82% were managed at home. 8% were hospitalized and 1 person died. 89% of pwCF experienced delay in care. The prevalence of anxiety increased from 43% baseline to 58% during the pandemic (P<0.01). In post-hoc analysis, the proportion of patients with diabetes (38% versus 16%, P<0.01) and pancreatic insufficiency (96% versus 66%, P<0.01) were higher while CFTR modulator use was lower (46% versus 65%, P = 0.05) in pwCF who tested positive for COVID-19. CONCLUSIONS: The prevalence of COVID-19 among pwCF in NY during the pandemic first wave was low and most cases were managed at home. CFTR modulators may be protective. PwCF experienced delay in routine care and increased anxiety.


Assuntos
COVID-19 , Fibrose Cística , COVID-19/diagnóstico , COVID-19/epidemiologia , Fibrose Cística/complicações , Fibrose Cística/diagnóstico , Fibrose Cística/epidemiologia , Regulador de Condutância Transmembrana em Fibrose Cística/genética , Humanos , Imunoglobulina G , New York/epidemiologia , Pandemias , Estudos Retrospectivos
3.
J Surg Res ; 232: 257-265, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-30463726

RESUMO

INTRODUCTION: Isolated hip fracture (IHF) is a common injury in the elderly after a fall. However, there is limited study on elderly IHF patients' subsequent hospitalization for a new injury, that is, trauma-related recidivism. METHODS: A retrospective review of the trauma registry at an ACS level I trauma center was performed for all elderly (age ≥ 65 y) blunt trauma patients admitted between 2007 and 2017, with a focus on IHF patients. IHF was defined as a fracture of the femoral head, neck, and/or trochanteric region without any other injuries except minor soft tissue trauma after a fall. RESULTS: Of the 4986 elderly blunt trauma admissions, 974 (19.5%) had an IHF. The rate of trauma-related recidivism was 8.9% (n = 87) for a second injury requiring hospitalization. The majority of recidivist (74.7%) and nonrecidivist (66.5%) patients were females. Hospital length of stay was similar at index admission (7 d for recidivists versus 8 d for nonrecidivists). The median interval between index hospitalization and admission for a second injury was 373 d (IQR 156-1002). The most common mechanism of injury at index admission (95.4%) and at second injury-related hospitalization (95.4%) was a low-level fall. Among recidivist patients at second admission, a second hip fracture was present in 34.5% and intracranial hemorrhage in 17.2%. CONCLUSIONS: After initial admission for an IHF, 8.9% of patients were readmitted for a second injury, at a median time of approximately 1 y, overwhelmingly from a low-level fall. Emphasis on fall prevention programs and at index admission is recommended.


Assuntos
Fraturas do Quadril/epidemiologia , Readmissão do Paciente , Acidentes por Quedas , Idoso , Idoso de 80 Anos ou mais , Comorbidade , Feminino , Hospitalização , Humanos , Incidência , Masculino , Estudos Retrospectivos , Centros de Traumatologia , Ferimentos não Penetrantes/epidemiologia
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