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1.
Front Neurol ; 14: 1243379, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37712087

RESUMO

Cerebrotendinous xanthomatosis (CTX) is a rare autosomal recessive disorder caused by a deficiency of the sterol 27-hydroxylase enzyme. This deficiency results in excess production and accumulation of cholestanol, which can lead to many clinical findings within the first three decades of life, including progressive neurological dysfunction. This is a treatable condition with improvements in neurological and non-neurological symptoms upon the early initiation of replacement therapy. This case report details a 42 years-old left-handed male in whom deep brain stimulation (DBS) intervention was pursued due to a limiting tremor related to delayed diagnosis and treatment of CTX at 22 years old. The application of DBS in treating tremors in a CTX patient has not previously been reported. For our patient, application of DBS led to meaningful and longstanding tremor control benefits that have required minimal changes to stimulation parameters post-DBS. These improvements to tremor were achieved without negative impact to his other CTX related comorbidities.

2.
Neuro Oncol ; 25(6): 1123-1131, 2023 06 02.
Artigo em Inglês | MEDLINE | ID: mdl-36472389

RESUMO

BACKGROUND: A recent phase III trial (NCT01372774) comparing use of stereotactic radiosurgery [SRS] versus whole-brain radiation therapy [WBRT] after surgical resection of a single brain metastasis revealed that declines in cognitive function were more common with WBRT than with SRS. A secondary endpoint in that trial, and the primary objective in this secondary analysis, was to identify baseline biomarkers associated with cognitive impairment after either form of radiotherapy for brain metastasis. Here we report our findings on APOE genotype and serum levels of associated proteins and their association with radiation-induced neurocognitive decline. METHODS: In this retrospective analysis of prospectively collected samples from a completed randomized clinical trial, patients provided blood samples every 3 months that were tested by genotyping and enzyme-linked immunosorbent assay, and results were analyzed in association with cognitive impairment. RESULTS: The APOE genotype was not associated with neurocognitive impairment at 3 months. However, low serum levels of ApoJ, ApoE, or ApoA protein (all P < .01) and higher amyloid beta (Aß 1-42) levels (P = .048) at baseline indicated a greater likelihood of neurocognitive decline at 3 months after SRS, whereas lower ApoJ levels were associated with decline after WBRT (P = .014). CONCLUSIONS: Patients with these pretreatment serum markers should be counseled about radiation-related neurocognitive decline.


Assuntos
Neoplasias Encefálicas , Disfunção Cognitiva , Radiocirurgia , Humanos , Neoplasias Encefálicas/secundário , Estudos Retrospectivos , Peptídeos beta-Amiloides , Irradiação Craniana/efeitos adversos , Irradiação Craniana/métodos , Radiocirurgia/efeitos adversos , Radiocirurgia/métodos , Disfunção Cognitiva/etiologia
3.
JAMA Oncol ; 8(12): 1809-1815, 2022 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-36264568

RESUMO

Importance: Long-term outcomes of radiotherapy are important in understanding the risks and benefits of therapies for patients with brain metastases. Objective: To determine how the use of postoperative whole-brain radiotherapy (WBRT) or stereotactic radiosurgery (SRS) is associated with quality of life (QOL), cognitive function, and intracranial tumor control in long-term survivors with 1 to 4 brain metastases. Design, Setting, and Participants: This secondary analysis of a randomized phase 3 clinical trial included 48 institutions in the US and Canada. Adult patients with 1 resected brain metastases but limited to those with 1 to 4 brain metastasis were eligible. Unresected metastases were treated with SRS. Long-term survivors were defined as evaluable patients who lived longer than 1 year from randomization. Patients were recruited between July 2011 and December 2015, and data were first analyzed in February 2017. For the present study, intracranial tumor control, cognitive deterioration, QOL, and cognitive outcomes were measured in evaluable patients who were alive at 12 months from randomization and reanalyzed in June 2017. Interventions: Stereotactic radiosurgery or WBRT. Main Outcomes and Measures: Intracranial tumor control, toxic effects, cognitive deterioration, and QOL. Results: Fifty-four patients (27 SRS arm, 27 WBRT arm; female to male ratio, 65% vs 35%) were included for analysis with a median follow-up of 23.8 months. Cognitive deterioration was less frequent with SRS (37%-60%) compared with WBRT (75%-91%) at all time points. More patients declined by 2 or more standard deviations (SDs) in 1 or more cognitive tests for WBRT compared with SRS at 3, 6, and 9 months (70% vs 22%, 46% vs 19%, and 50% vs 20%, respectively). A 2 SD decline in at least 2 cognitive tests was associated with worse 12-month QOL in emotional well-being, functional well-being, general, additional concerns, and total scores. Overall QOL and functional independence favored SRS alone for categorical change at all time points. Total intracranial control for SRS alone vs WBRT at 12 months was 40.7% vs 81.5% (difference, -40.7; 95% CI, -68.1% to -13.4%), respectively. Data were first analyzed in February 2017. Conclusions and Relevance: The use of SRS alone compared with WBRT resulted in less cognitive deterioration among long-term survivors. The association of late cognitive deterioration with WBRT was clinically meaningful. A significant decline in cognition (2 SD) was associated with overall QOL. However, intracranial tumor control was improved with WBRT. This study provides detailed insight into cognitive function over time in this patient population. Trial Registration: ClinicalTrials.gov Identifier: NCT01372774; ALLIANCE/CCTG: N107C/CEC.3 (Alliance for Clinical Trials in Oncology/Canadian Cancer Trials Group).


Assuntos
Neoplasias Encefálicas , Radiocirurgia , Adulto , Humanos , Masculino , Feminino , Radiocirurgia/efeitos adversos , Radiocirurgia/métodos , Irradiação Craniana/efeitos adversos , Irradiação Craniana/métodos , Qualidade de Vida , Canadá , Neoplasias Encefálicas/secundário , Encéfalo/cirurgia
5.
Int Arch Occup Environ Health ; 94(4): 723-730, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-33394180

RESUMO

OBJECTIVE: The aim of this study was to determine whether long-standing racial disparities in lead exposure still exists for children age 1-5 years old. We examined if blood lead levels were higher among non-Hispanic Black children and others compared to non-Hispanic White children. METHODS: Data from the National Health and Nutrition Examination Survey (NHANES) from 1999-2016 were used. Geometric mean blood lead levels (BLLs) were compared by race/ethnicity using log-transformed simple linear regression. Associations between race and elevated BLL were assessed using weighted Chi-square tests. Log-transformed multiple weighted linear regression was used to assess what factors affected BLLs. RESULTS: A total of 6772 children were included in this study. In 1999-2000, the geometric mean BLL for non-Hispanic Black children was 3.08 µg/dL, compared to 2.03 µg/dL for non-Hispanic White children (p = 0.01). The difference in geometric mean BLL between non-Hispanic Black children and non-Hispanic White children continued to be statistically significant in later years (all p < 0.05) until 2015-2016 (0.89 µg/dL vs 0.74 µg/dL, p = 0.17). Log-transformed linear regression showed that being non-Hispanic Black and having low family income were independently associated with higher BLL. CONCLUSION: Although lead exposure in the general population continued to decline for all racial/ethnic groups, non-Hispanic Black children still had higher BLL than non-Hispanic White children. In more recent years, the racial/ethnic gap was lesser but persisted. Racial/ethnic disparity in childhood BLL could be partially explained by socio-economic factors.


Assuntos
Negro ou Afro-Americano/estatística & dados numéricos , Exposição Ambiental/análise , Disparidades nos Níveis de Saúde , Chumbo/sangue , População Branca/estatística & dados numéricos , Pré-Escolar , Etnicidade , Feminino , Humanos , Lactente , Intoxicação por Chumbo/sangue , Intoxicação por Chumbo/epidemiologia , Masculino , Inquéritos Nutricionais , Estados Unidos/epidemiologia
6.
J Racial Ethn Health Disparities ; 8(2): 475-484, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-32562167

RESUMO

A depressed African American emerging adult's intention to seek help can be affected by the severity of their mental health or perception of self-flourishing, or positive mental health. Using the Healthy Minds Study, a nationally representative dataset, utilization of mental health services among African American emerging adult students who have been diagnosed with depression by a health professional (n = 201), and the mediating effect of positive mental health on help-seeking intentions were examined. The findings revealed that 89.45% of students reported help-seeking intentions, and they may have one or more than one way of seeking help from a professional clinician, roommate or friend, or significant. The findings show that there are specific groups of people that African Americans prefer to engage with when addressing their mental health. It is critical that we consider these groups when developing interventions or programs for their service access on college campuses and beyond.


Assuntos
Negro ou Afro-Americano/psicologia , Depressão/etnologia , Comportamento de Busca de Ajuda , Intenção , Estudantes/psicologia , Adolescente , Adulto , Negro ou Afro-Americano/estatística & dados numéricos , Depressão/diagnóstico , Feminino , Humanos , Masculino , Serviços de Saúde Mental/estatística & dados numéricos , Estudantes/estatística & dados numéricos , Estados Unidos , Universidades , Adulto Jovem
7.
Environ Sci Pollut Res Int ; 27(36): 45836-45843, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32803607

RESUMO

The aim of this study was to investigate the association between blood lead level (BLL) and hypertension in adults when lead exposure for the general population is low. The study used data from the US National Health and Nutrition Examination Survey (NHANES) 1999-2016. Participants aged 20 to 79 years were included in our study. Weighted multiple linear regression and logistic regression were conducted to test the association between BLL and systolic/diastolic blood pressure and hypertension status, respectively, while controlling for age, gender, race/ethnicity, body mass index, income level, and education. A total of 30,467 participants were included in this study. There was no association between BLL and hypertension status for the overall sample. Among those who were not taking antihypertensive medication, after adjusting for covariates, systolic blood pressure was positively correlated with BLL in non-Hispanic Whites (P = 0.004) and non-Hispanic Blacks (P = 0.0005), but not Hispanics (P = 0.07) nor Others (P = 0.37). The relationship between diastolic blood pressure and lead levels was also significant in non-Hispanic Whites and non-Hispanic Blacks. This study showed that higher BLL was associated with higher systolic and diastolic blood pressure in some population groups, but not associated with hypertension status.


Assuntos
Hipertensão , Chumbo , Adulto , Idoso , Anti-Hipertensivos , Pressão Sanguínea , Humanos , Pessoa de Meia-Idade , Inquéritos Nutricionais , Estados Unidos , Adulto Jovem
8.
Int J Radiat Oncol Biol Phys ; 106(2): 255-260, 2020 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-31654784

RESUMO

PURPOSE: Whole brain radiation therapy (WBRT) remains a commonly used cancer treatment, although controversy exists regarding the optimal dose/fractionation to optimize intracranial tumor control and minimize resultant cognitive deficits. METHODS AND MATERIALS: NCCTG N107C [Alliance]/CEC.3 randomized 194 patients with brain metastases to either stereotactic radiosurgery alone or WBRT after surgical resection. Among the 92 patients receiving WBRT, sites predetermined the dose/fractionation that would be used for all patients treated at that site (either 30 Gy in 10 fractions or 37.5 Gy in 15 fractions). Analyses were performed using Kaplan-Meier estimates, log rank tests, and Fisher's exact tests. RESULTS: Among 92 patients treated with surgical resection and adjuvant WBRT, 49 were treated with 30 Gy in 10 fractions (53%), and 43 were treated with 37.5 Gy in 15 fractions (47%). Baseline characteristics, including cognitive testing, were well balanced between groups with the exception of primary tumor type (lung cancer histology was more frequent with protracted WBRT: 72% vs 45%, P = .01), and 93% of patients completed the full course of WBRT. A more protracted WBRT dose regimen (37.5 Gy in 15 fractions) did not significantly affect time to cognitive failure (hazard ratio [HR], 0.9; 95% confidence interval [CI], 0.6-1.39; P = .66), surgical bed control (HR, 0.52 [95% CI, 0.22-1.25], P = .14), intracranial tumor control (HR, 0.56 [95% CI, 0.28-1.12], P = .09), or overall survival (HR, 0.72 [95% CI, 0.45-1.16], P = .18). Although there was no reported radionecrosis, there is a statistically significant increase in the risk of at least 1 grade ≥3 adverse event with 37.5 Gy in 15 fractions versus 30 Gy in 10 fractions (54% vs 31%, respectively, P = .03). CONCLUSIONS: This post hoc analysis does not demonstrate that protracted WBRT courses reduce the risk of cognitive deficit, improve tumor control in the hypoxic surgical cavity, or otherwise improve the therapeutic ratio. Adverse events were significantly higher with the lengthened course of WBRT. For patients with brain metastases where WBRT is recommended, shorter course hypofractionated regimens remain the current standard of care.


Assuntos
Neoplasias Encefálicas/radioterapia , Transtornos Cognitivos/prevenção & controle , Irradiação Craniana/normas , Melhoria de Qualidade , Radiocirurgia/normas , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias Encefálicas/secundário , Neoplasias Encefálicas/cirurgia , Intervalos de Confiança , Irradiação Craniana/efeitos adversos , Fracionamento da Dose de Radiação , Feminino , Humanos , Estimativa de Kaplan-Meier , Neoplasias Pulmonares/patologia , Masculino , Pessoa de Meia-Idade , Modelos de Riscos Proporcionais , Estudos Prospectivos , Radiocirurgia/efeitos adversos , Radioterapia Adjuvante/efeitos adversos , Radioterapia Adjuvante/normas
9.
Am J Hosp Palliat Care ; 36(1): 50-54, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-29976075

RESUMO

BACKGROUND:: Optimizing recruitment efficiency is an important strategy to address the resource limitations that typically constrain clinical research. Surprisingly, little empiric data exist to guide research teams attempting to recruit a difficult population into similar studies. Our objective was to investigate factors associated with enrollment into an advance care planning interventional trial. METHODS:: This study used secondary data of patients with advanced cancer receiving treatment at an academic medical center in central Pennsylvania who were referred to a randomized controlled trial of an advance care planning intervention. Enrolled participants were compared to nonparticipants with regard to age, gender, race, season of recruitment, elapsed time between recruitment stage, distance to study site, and number of recruitment calls. RESULTS:: Of the 1988 patients referred, 200 participants were enrolled yielding a recruitment efficiency of 10%. Two-thirds of all enrolled participants were recruited with 1 or less phone calls, whereas only 5% were enrolled after 3 calls. There were no statistically significant differences in enrollment based on gender ( P = .88) or elapsed time between recruitment contacts ( P = .22). However, nonparticipants were slightly older ( P = .02). CONCLUSIONS:: Our finding that individuals were more likely to enroll within the first 3 phone calls suggests that recruitment efforts should be focused on making initial contacts with potential participants, rather than continuing attempts to those who are unable to be contacted easily. Researchers could optimize their recruitment strategy by periodically performing similar analyses, comparing differences between participants and nonparticipants.


Assuntos
Planejamento Antecipado de Cuidados/organização & administração , Seleção de Pacientes , Projetos de Pesquisa , Assistência Terminal/organização & administração , Centros Médicos Acadêmicos , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Grupos Raciais , Fatores de Tempo
10.
J Oncol Pract ; 15(1): e65-e73, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-30543761

RESUMO

PURPOSE: Advance directives (AD) have been heralded as vehicles to promote patient autonomy and have been decried as ineffective. Efforts to improve advance care planning (ACP) and AD documents are wide ranging but have not been prospectively studied. MATERIALS AND METHODS: In an institutional review board-approved, single-blind, randomized, controlled trial, we compared an interactive, educational ACP decision aid to standard ACP among patients with advanced cancer. We hypothesized that use of the decision aid would increase physician awareness of patients' health care wishes and increase physician adherence to patients' end-of-life wishes compared with standard ACP. RESULTS: A total of 200 patients were randomly assigned to two study arms. We analyzed data from medical records and interviews with physicians and family members for 121 patients who died by August 2016. No differences in physician awareness or adherence were found between the ACP decision aid and standard ACP groups. End-of-life treatment wishes and discussion of wishes were documented for 70% and 64% of the patients, respectively, but only 35% had an actual AD in the medical record. According to family members, end-of-life care was consistent with the patients' stated wishes 94% of the time. Similarly, according to physicians, it was consistent for 98%. However, according to AD documents, delivered care was consistent with desired care in only 65%. Considerably fewer patients than predicted died, and data from physicians were difficult to obtain. CONCLUSION: ACP type did not influence documentation of patient wishes or end-of-life care received. Future prospective studies must account for challenges in prognostication and point-of-care data collection at the end of life.


Assuntos
Planejamento Antecipado de Cuidados , Neoplasias/terapia , Assistência Terminal , Diretivas Antecipadas , Feminino , Humanos , Masculino , Médicos , Método Simples-Cego
11.
Int J Radiat Oncol Biol Phys ; 99(5): 1173-1178, 2017 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-28939223

RESUMO

PURPOSE: To determine whether whole-brain radiation therapy (WBRT) is associated with improved overall survival among non-small cell lung cancer (NSCLC) patients with favorable prognoses at diagnosis. METHODS AND MATERIALS: In the N0574 trial, patients with 1 to 3 brain metastases were randomized to receive stereotactic radiosurgery (SRS) or SRS plus WBRT (SRS + WBRT), with a primary endpoint of cognitive deterioration. We calculated diagnosis-specific graded prognostic assessment (DS-GPA) scores for NSCLC patients and evaluated overall survival according to receipt of WBRT and DS-GPA score using 2 separate cut-points (≥2.0 vs <2.0 and ≥2.5 vs <2.5). RESULTS: A total of 126 NSCLC patients were included for analysis, with median follow-up of 14.2 months. Data for DS-GPA calculation were available for 86.3% of all enrolled NSCLC patients. Overall, 50.0% of patients had DS-GPA score ≥2.0, and 23.0% of patients had DS-GPA scores ≥2.5. The SRS and SRS + WBRT groups were well balanced with regard to prognostic factors. The median survival according to receipt of WBRT was 11.3 months (+WBRT) and 17.9 months (-WBRT) for patients with DS-GPA ≥2.0 (favorable prognoses, P=.63; hazard ratio 0.86; 95% confidence interval 0.47-1.59). Median survival was 3.7 months (+WBRT) and 6.6 months (-WBRT) for patients with DS-GPA <2.0 patients (unfavorable prognoses, P=.85; hazard ratio 0.95; 95% confidence interval 0.56-1.62). Outcomes according to the receipt of WBRT and DS-GPA remained similar utilizing DS-GPA ≥2.5 as a cutoff for favorable prognoses. There was no interaction between the continuum of the DS-GPA groups and WBRT on overall survival (P=.53). CONCLUSIONS: We observed no significant differences in survival according to receipt of WBRT in favorable-prognosis NSCLC patients. This study further supports the approach of SRS alone in the majority of patients with limited brain metastases.


Assuntos
Neoplasias Encefálicas/mortalidade , Neoplasias Encefálicas/secundário , Carcinoma Pulmonar de Células não Pequenas/mortalidade , Carcinoma Pulmonar de Células não Pequenas/secundário , Irradiação Craniana/mortalidade , Neoplasias Pulmonares , Radiocirurgia/mortalidade , Neoplasias Encefálicas/radioterapia , Carcinoma Pulmonar de Células não Pequenas/radioterapia , Terapia Combinada/métodos , Irradiação Craniana/métodos , Humanos , Neoplasias Pulmonares/patologia , Prognóstico , Radiocirurgia/métodos , Radioterapia Adjuvante/métodos , Radioterapia Adjuvante/mortalidade
12.
Lancet Oncol ; 18(8): 1049-1060, 2017 08.
Artigo em Inglês | MEDLINE | ID: mdl-28687377

RESUMO

BACKGROUND: Whole brain radiotherapy (WBRT) is the standard of care to improve intracranial control following resection of brain metastasis. However, stereotactic radiosurgery (SRS) to the surgical cavity is widely used in an attempt to reduce cognitive toxicity, despite the absence of high-level comparative data substantiating efficacy in the postoperative setting. We aimed to establish the effect of SRS on survival and cognitive outcomes compared with WBRT in patients with resected brain metastasis. METHODS: In this randomised, controlled, phase 3 trial, adult patients (aged 18 years or older) from 48 institutions in the USA and Canada with one resected brain metastasis and a resection cavity less than 5·0 cm in maximal extent were randomly assigned (1:1) to either postoperative SRS (12-20 Gy single fraction with dose determined by surgical cavity volume) or WBRT (30 Gy in ten daily fractions or 37·5 Gy in 15 daily fractions of 2·5 Gy; fractionation schedule predetermined for all patients at treating centre). We randomised patients using a dynamic allocation strategy with stratification factors of age, duration of extracranial disease control, number of brain metastases, histology, maximal resection cavity diameter, and treatment centre. Patients and investigators were not masked to treatment allocation. The co-primary endpoints were cognitive-deterioration-free survival and overall survival, and analyses were done by intention to treat. We report the final analysis. This trial is registered with ClinicalTrials.gov, number NCT01372774. FINDINGS: Between Nov 10, 2011, and Nov 16, 2015, 194 patients were enrolled and randomly assigned to SRS (98 patients) or WBRT (96 patients). Median follow-up was 11·1 months (IQR 5·1-18·0). Cognitive-deterioration-free survival was longer in patients assigned to SRS (median 3·7 months [95% CI 3·45-5·06], 93 events) than in patients assigned to WBRT (median 3·0 months [2·86-3·25], 93 events; hazard ratio [HR] 0·47 [95% CI 0·35-0·63]; p<0·0001), and cognitive deterioration at 6 months was less frequent in patients who received SRS than those who received WBRT (28 [52%] of 54 evaluable patients assigned to SRS vs 41 [85%] of 48 evaluable patients assigned to WBRT; difference -33·6% [95% CI -45·3 to -21·8], p<0·00031). Median overall survival was 12·2 months (95% CI 9·7-16·0, 69 deaths) for SRS and 11·6 months (9·9-18·0, 67 deaths) for WBRT (HR 1·07 [95% CI 0·76-1·50]; p=0·70). The most common grade 3 or 4 adverse events reported with a relative frequency greater than 4% were hearing impairment (three [3%] of 93 patients in the SRS group vs eight [9%] of 92 patients in the WBRT group) and cognitive disturbance (three [3%] vs five [5%]). There were no treatment-related deaths. INTERPRETATION: Decline in cognitive function was more frequent with WBRT than with SRS and there was no difference in overall survival between the treatment groups. After resection of a brain metastasis, SRS radiosurgery should be considered one of the standards of care as a less toxic alternative to WBRT for this patient population. FUNDING: National Cancer Institute.


Assuntos
Neoplasias Encefálicas/radioterapia , Neoplasias Encefálicas/cirurgia , Transtornos Cognitivos/etiologia , Recidiva Local de Neoplasia/diagnóstico por imagem , Radiocirurgia , Atividades Cotidianas , Adolescente , Adulto , Neoplasias Encefálicas/secundário , Progressão da Doença , Intervalo Livre de Doença , Fracionamento da Dose de Radiação , Feminino , Seguimentos , Humanos , Análise de Intenção de Tratamento , Imageamento por Ressonância Magnética , Masculino , Metastasectomia , Pessoa de Meia-Idade , Qualidade de Vida , Radiocirurgia/efeitos adversos , Radioterapia Adjuvante , Taxa de Sobrevida , Adulto Jovem
13.
Artigo em Inglês | MEDLINE | ID: mdl-28631959

RESUMO

PURPOSE: To determine whether an advance care planning (ACP) decision-aid could improve communication about end-of-life treatment wishes between patients with amyotrophic lateral sclerosis (ALS) and their clinicians. METHODS: Forty-four patients with ALS (>21, English-speaking, without dementia) engaged in ACP using an interactive computer based decision-aid. Before participants completed the intervention, and again three months later, their clinicians reviewed three clinical vignettes, and made treatment decisions (n = 18) for patients. After patients indicated their agreement with the team's decisions, concordance was calculated. RESULTS: The mean concordance between patient wishes and the clinical team decisions was significantly higher post-intervention (post = 91.9%, 95% CI = 87.8, 96.1, vs. pre = 52.4%, 95% CI = 41.9, 62.9; p <0.001). Clinical team members reported greater confidence that their decisions accurately represented each patient's wishes post-intervention (mean = 6.5) compared to pre-intervention (mean = 3.3, 1 = low, 10 = high, p <0.001). Patients reported high satisfaction (mean = 26.4, SD = 3.2; 6 = low, 30 = high) and low decisional conflict (mean = 28.8, SD = 8.2; 20 = low, 80 = high) with decisions about end-of-life care, and high satisfaction with the decision-aid (mean = 52.7, SD = 5.7, 20 = low, 60 = high). Patient knowledge regarding ACP increased post-intervention (pre = 47.8% correct responses vs. post = 66.3%; p <0.001) without adversely affecting patient anxiety or self-determination. CONCLUSION: A computer based ACP decision-aid can significantly improve clinicians' understanding of ALS patients' wishes with regard to end-of-life medical care.


Assuntos
Planejamento Antecipado de Cuidados , Esclerose Lateral Amiotrófica/terapia , Tomada de Decisões , Satisfação do Paciente , Relações Médico-Paciente , Assistência Terminal/métodos , Adulto , Planejamento Antecipado de Cuidados/tendências , Idoso , Esclerose Lateral Amiotrófica/diagnóstico , Esclerose Lateral Amiotrófica/psicologia , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Assistência Terminal/tendências
14.
JAMA ; 316(4): 401-409, 2016 Jul 26.
Artigo em Inglês | MEDLINE | ID: mdl-27458945

RESUMO

IMPORTANCE: Whole brain radiotherapy (WBRT) significantly improves tumor control in the brain after stereotactic radiosurgery (SRS), yet because of its association with cognitive decline, its role in the treatment of patients with brain metastases remains controversial. OBJECTIVE: To determine whether there is less cognitive deterioration at 3 months after SRS alone vs SRS plus WBRT. DESIGN, SETTING, AND PARTICIPANTS: At 34 institutions in North America, patients with 1 to 3 brain metastases were randomized to receive SRS or SRS plus WBRT between February 2002 and December 2013. INTERVENTIONS: The WBRT dose schedule was 30 Gy in 12 fractions; the SRS dose was 18 to 22 Gy in the SRS plus WBRT group and 20 to 24 Gy for SRS alone. MAIN OUTCOMES AND MEASURES: The primary end point was cognitive deterioration (decline >1 SD from baseline on at least 1 cognitive test at 3 months) in participants who completed the baseline and 3-month assessments. Secondary end points included time to intracranial failure, quality of life, functional independence, long-term cognitive status, and overall survival. RESULTS: There were 213 randomized participants (SRS alone, n = 111; SRS plus WBRT, n = 102) with a mean age of 60.6 years (SD, 10.5 years); 103 (48%) were women. There was less cognitive deterioration at 3 months after SRS alone (40/63 patients [63.5%]) than when combined with WBRT (44/48 patients [91.7%]; difference, -28.2%; 90% CI, -41.9% to -14.4%; P < .001). Quality of life was higher at 3 months with SRS alone, including overall quality of life (mean change from baseline, -0.1 vs -12.0 points; mean difference, 11.9; 95% CI, 4.8-19.0 points; P = .001). Time to intracranial failure was significantly shorter for SRS alone compared with SRS plus WBRT (hazard ratio, 3.6; 95% CI, 2.2-5.9; P < .001). There was no significant difference in functional independence at 3 months between the treatment groups (mean change from baseline, -1.5 points for SRS alone vs -4.2 points for SRS plus WBRT; mean difference, 2.7 points; 95% CI, -2.0 to 7.4 points; P = .26). Median overall survival was 10.4 months for SRS alone and 7.4 months for SRS plus WBRT (hazard ratio, 1.02; 95% CI, 0.75-1.38; P = .92). For long-term survivors, the incidence of cognitive deterioration was less after SRS alone at 3 months (5/11 [45.5%] vs 16/17 [94.1%]; difference, -48.7%; 95% CI, -87.6% to -9.7%; P = .007) and at 12 months (6/10 [60%] vs 17/18 [94.4%]; difference, -34.4%; 95% CI, -74.4% to 5.5%; P = .04). CONCLUSIONS AND RELEVANCE: Among patients with 1 to 3 brain metastases, the use of SRS alone, compared with SRS combined with WBRT, resulted in less cognitive deterioration at 3 months. In the absence of a difference in overall survival, these findings suggest that for patients with 1 to 3 brain metastases amenable to radiosurgery, SRS alone may be a preferred strategy. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT00377156.


Assuntos
Neoplasias Encefálicas/radioterapia , Neoplasias Encefálicas/cirurgia , Transtornos Cognitivos/etiologia , Cognição/efeitos da radiação , Irradiação Craniana , Adulto , Idoso , Neoplasias Encefálicas/mortalidade , Neoplasias Encefálicas/secundário , Terapia Combinada/métodos , Fracionamento da Dose de Radiação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Radiocirurgia , Análise de Sobrevida , Sobreviventes , Fatores de Tempo
15.
Chronic Illn ; 12(3): 227-35, 2016 09.
Artigo em Inglês | MEDLINE | ID: mdl-27055468

RESUMO

OBJECTIVE: Many patients with chronic illnesses report a desire for increased involvement in medical decision-making. This pilot study aimed to explore how patients with exacerbation-prone disease trajectories such as advanced heart failure or chronic obstructive pulmonary disease experience advance care planning using an online decision aid and to compare whether patients with different types of exacerbation-prone illnesses had varied experiences using the tool. METHODS: Pre-intervention questionnaires measured advance care planning knowledge. Post-intervention questionnaires measured: (1) advance care planning knowledge; (2) satisfaction with tool; (3) decisional conflict; and (4) accuracy of the resultant advance directive. Comparisons were made between patients with heart failure and chronic obstructive pulmonary disease. RESULTS: Over 90% of the patients with heart failure (n = 24) or chronic obstructive pulmonary disease (n = 25) reported being "satisfied" or "highly satisfied" with the tool across all satisfaction domains; over 90% of participants rated the resultant advance directive as "very accurate." Participants reported low decisional conflict. Advance care planning knowledge scores rose by 18% (p < 0.001) post-intervention. There were no significant differences between participants with heart failure and chronic obstructive pulmonary disease. DISCUSSION: Patients with advanced heart failure and chronic obstructive pulmonary disease were highly satisfied after using an online advance care planning decision aid and had increased knowledge of advance care planning. This tool can be a useful resource for time-constrained clinicians whose patients wish to engage in advance care planning.


Assuntos
Planejamento Antecipado de Cuidados , Técnicas de Apoio para a Decisão , Insuficiência Cardíaca/psicologia , Satisfação do Paciente , Doença Pulmonar Obstrutiva Crônica/psicologia , Idoso , Doença Crônica , Conflito Psicológico , Tomada de Decisões , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Inquéritos e Questionários
16.
J Health Psychol ; 21(10): 2269-82, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-25845832

RESUMO

This study examined the day-to-day lives of early stage lung cancer survivors who were discharged from treatment between 2 and 24 months prior to the study. Lung cancer survivors were called on eight consecutive nights and completed an interview about their daily experiences. Repeated measures, multilevel analysis of the phone interview data was conducted. Survivors reported few daily stressor exposures or somatic symptoms. Daily moods were generally positive, and survivors reported living quite independently. Lung cancer survivors did not report experiencing health-related worry on a daily basis. The findings from this study create a much more positive picture of lung cancer survivorship relative to prior studies.


Assuntos
Sobreviventes de Câncer/psicologia , Neoplasias Pulmonares/psicologia , Qualidade de Vida/psicologia , Idoso , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade
17.
J Palliat Med ; 18(12): 1015-8, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26262942

RESUMO

BACKGROUND: People with cancer face complex medical decisions, including whether to receive life-sustaining treatments at the end of life. It is not unusual for clinicians to make assumptions about patients' wishes based on whether they had previously chosen to pursue curative treatment. OBJECTIVE: We hypothesized that cancer patients who initially underwent curative intent surgery (CIS) would prefer more aggressive end-of-life treatments compared to patients whose treatment was noncurative intent (non-CIT). METHODS: This study was a retrospective review of data from a large, randomized controlled trial examining the use of an online decision aid for advance care planning, "Making Your Wishes Known" (MYWK), with patients who had advanced cancer. We reviewed patients' medical records to determine which patients underwent CIS versus non-CIT. In the parent trial, conducted at an academic medical center (2007-2012), 200 patients were enrolled with stage IV malignancy or other poor prognosis cancer. Patients' preferences for aggressive treatment were measured in two ways: using patient-selected General Wishes statements generated by the decision aid and patient-selected wishes for specific treatments under various hypothetical clinical scenarios (Specific Wishes). RESULTS: We evaluated 79 patients. Of these, 48 had undergone initial CIS and 31 had non-CIT. Cancer patients who initially underwent CIS did not prefer more aggressive end-of-life treatments compared to patients whose treatment was non-CIT. CONCLUSIONS: Clinicians should avoid assumptions about patients' preferences for life-sustaining treatment based on their prior choices for aggressive treatment.


Assuntos
Planejamento Antecipado de Cuidados , Técnicas de Apoio para a Decisão , Neoplasias/psicologia , Preferência do Paciente/psicologia , Assistência Terminal/psicologia , Idoso , Feminino , Humanos , Internet , Cuidados para Prolongar a Vida/psicologia , Cuidados para Prolongar a Vida/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Cuidados Paliativos/psicologia , Cuidados Paliativos/estatística & dados numéricos , Preferência do Paciente/estatística & dados numéricos , Relações Médico-Paciente , Ensaios Clínicos Controlados Aleatórios como Assunto , Estudos Retrospectivos
18.
J Pain Symptom Manage ; 49(6): 1088-96, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25542552

RESUMO

CONTEXT: Many physicians avoid advance care planning (ACP) discussions because they worry such conversations will lead to psychological distress. OBJECTIVES: To investigate whether engaging in ACP using online planning tools adversely affects hope, hopelessness, or anxiety among patients with advanced cancer. METHODS: Patients with advanced cancer and an estimated survival of two years or less (Intervention group) and a Control group were recruited at a tertiary care academic medical center (2007-2012) to engage in ACP using an online decision aid ("Making Your Wishes Known"). Pre/post and between-group comparisons were made, including hope (Herth Hope Index), hopelessness (Beck Hopelessness Scale), and anxiety (State Trait Anxiety Inventory). Secondary outcomes included ACP knowledge, self-determination, and satisfaction. RESULTS: A total of 200 individuals completed the study. After engaging in ACP, there was no decline in hope or increase in hopelessness in either the Control or Intervention group. Anxiety was likewise unchanged in the Control group but decreased slightly in the Intervention group. Knowledge of ACP (% correct answers) increased in both the groups, but more so in the Intervention group (13% increase vs. 4%; P<0.01). Self-determination increased slightly in both groups, and satisfaction with the ACP process was greater (P<0.01) in the Intervention than Control group. CONCLUSION: Engaging in ACP with online planning tools increases knowledge without diminishing hope, increasing hopelessness, or inducing anxiety in patients with advanced cancer. Physicians need not avoid ACP out of concern for adversely affecting patients' psychological well-being.


Assuntos
Planejamento Antecipado de Cuidados , Ansiedade , Esperança , Neoplasias/psicologia , Centros Médicos Acadêmicos , Idoso , Tomada de Decisões , Feminino , Seguimentos , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Satisfação do Paciente , Autonomia Pessoal , Testes Psicológicos , Método Simples-Cego , Centros de Atenção Terciária , Resultado do Tratamento
19.
J Palliat Med ; 15(6): 637-42, 2012 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-22512830

RESUMO

Despite widespread efforts to promote advance directives (ADs), completion rates remain low. Making Your Wishes Known: Planning Your Medical Future (MYWK) is an interactive computer program that guides individuals through the process of advance care planning, explaining health conditions and interventions that commonly involve life or death decisions, helps them articulate their values/goals, and translates users' preferences into a detailed AD document. The purpose of this study was to demonstrate that (in the absence of major life changes) the AD generated by MYWK reliably reflects an individual's values/preferences. English speakers ≥30 years old completed MYWK twice, 4 to 6 weeks apart. Reliability indices were assessed for three AD components: General Wishes; Specific Wishes for treatment; and Quality-of-Life values (QoL). Twenty-four participants completed the study. Both the Specific Wishes and QoL scales had high internal consistency in both time periods (Knuder Richardson formula 20 [KR-20]=0.83-0.95, and 0.86-0.89). Test-retest reliability was perfect for General Wishes (κ=1), high for QoL (Pearson's correlation coefficient=0.83), but lower for Specific Wishes (Pearson's correlation coefficient=0.57). MYWK generates an AD where General Wishes and QoL (but not Specific Wishes) statements remain consistent over time.


Assuntos
Planejamento Antecipado de Cuidados , Interface Usuário-Computador , Adulto , Planejamento Antecipado de Cuidados/organização & administração , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Reprodutibilidade dos Testes , Inquéritos e Questionários
20.
Neurosurgery ; 67(5): 1303-10, 2010 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-20871445

RESUMO

BACKGROUND: Reported infection rates after ventriculoperitoneal shunt surgery vary from 1 to 25%. Antibiotic-impregnated (AI) catheters may reduce shunt infection rates, but this is uncertain. OBJECTIVE: To establish a prospective shunt registry to evaluate short-term (3-month) infection rates associated with ventriculoperitoneal shunts and standard or AI catheters during surgical treatment of hydrocephalus. METHODS: A prospective, multicenter, noncontrolled, open-label registry investigated patients with de novo catheter implantation or catheter replacement of an existing ventriculoperitoneal shunt. The primary outcome was shunt infection. RESULTS: A total of 440 patients were entered into the registry at 10 sites: 3 in North America, 2 in Singapore, 4 in China and 1 in India. Seven patients were excluded. Of the 433 remaining patients, 314 had new shunts and 119 were revisions. Shunt infections occurred in 14 of 433 patients (3.2%) overall and in 2 of 37 infants (5.2%) younger than 1 year. AI catheters were used in 46 of 433 patients at 7 centers. The shunt infection rate was 0 of 46 for shunts with AI catheters and 14 of 387 (3.6%) without AI catheters. Infection rates were similar with AI catheters, adjusting for age and catheter type. CONCLUSION: The overall shunt infection rate was lower than in previous multicentered studies. The low infection rate and low rate of AI catheter use precludes any meaningful statement regarding the value of AI catheters in reducing the infection rate. Consideration should be given to performing a well designed, adequately powered, prospective randomized controlled trial to determine whether AI catheters reduce shunt infection rates.


Assuntos
Hidrocefalia/epidemiologia , Hidrocefalia/cirurgia , Cooperação Internacional , Infecções Relacionadas à Prótese/epidemiologia , Sistema de Registros/estatística & dados numéricos , Derivação Ventriculoperitoneal/estatística & dados numéricos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Prevalência , Medição de Risco , Fatores de Risco , Adulto Jovem
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