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1.
Qual Life Res ; 33(5): 1297-1305, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38381280

RESUMEN

PURPOSE: Child health-related quality of life (HRQOL) has been shown to improve after epilepsy surgery and is linked to parent HRQOL. We postulated that the HRQOL of parents whose children underwent epilepsy surgery would improve over two years compared to those treated with medical therapy. The aim of the study was to evaluate the trajectory of HRQOL of parents whose children received treatment with epilepsy surgery or medical therapy over two years. METHODS: This multi-center study recruited parents whose children were evaluated for epilepsy surgery. Parents completed measures of care-related QOL (CarerQOL) at the time of their children's surgical evaluation, 6 months, 1 year, and 2 years later. Additional measures included parent anxiety and depression, satisfaction with family relationships, family resources and demands, and child clinical variables. A linear mixed model was used to compare the trajectories of parent HRQOL of surgical and medical patients, adjusting for baseline clinical, parent, and family characteristics. RESULTS: There were 111 children treated with surgery and 154 with medical therapy. The trajectory of parent HRQOL was similar among parents of surgical and medical patients over the two-year follow-up. However, HRQOL of parents of surgical patients was 3.0 points higher (95%CI - 0.1, 6.1) across the follow-up period compared to parents of medical patients. Parents of seizure-free children reported 2.3 points (95%CI 0.2, 4.4) higher HRQOL relative to parents of non-seizure-free children across the two-year follow-up. CONCLUSION: Parent HRQOL did not improve after their children were treated with epilepsy surgery, possibly related to ongoing comorbidities in children.


Asunto(s)
Epilepsia , Padres , Calidad de Vida , Humanos , Calidad de Vida/psicología , Femenino , Masculino , Epilepsia/psicología , Epilepsia/cirugía , Padres/psicología , Niño , Preescolar , Adolescente , Adulto , Encuestas y Cuestionarios , Anticonvulsivantes/uso terapéutico
2.
Am J Epidemiol ; 192(5): 690-702, 2023 05 05.
Artículo en Inglés | MEDLINE | ID: mdl-36702471

RESUMEN

Since about 2010, life expectancy at birth in the United States has stagnated and begun to decline, with concurrent increases in the socioeconomic divide in life expectancy. The Simulation of Alcohol Control Policies for Health Equity (SIMAH) Project uses a novel microsimulation approach to investigate the extent to which alcohol use, socioeconomic status (SES), and race/ethnicity contribute to unequal developments in US life expectancy and how alcohol control interventions could reduce such inequalities. Representative, secondary data from several sources will be integrated into one coherent, dynamic microsimulation to model life-course changes in SES and alcohol use and cause-specific mortality attributable to alcohol use by SES, race/ethnicity, age, and sex. Markov models will be used to inform transition intensities between levels of SES and drinking patterns. The model will be used to compare a baseline scenario with multiple counterfactual intervention scenarios. The preliminary results indicate that the crucial microsimulation component provides a good fit to observed demographic changes in the population, providing a robust baseline model for further simulation work. By demonstrating the feasibility of this novel approach, the SIMAH Project promises to offer superior integration of relevant empirical evidence to inform public health policy for a more equitable future.


Asunto(s)
Equidad en Salud , Política Pública , Humanos , Recién Nacido , Simulación por Computador , Esperanza de Vida , Clase Social , Factores Socioeconómicos , Estados Unidos/epidemiología
3.
Epilepsia ; 64(12): 3342-3353, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37828819

RESUMEN

OBJECTIVE: This longitudinal cohort study aimed to identify trajectories of parent well-being over the first 2 years after their child's evaluation for candidacy for epilepsy surgery, and to identify the baseline clinical and demographic characteristics associated with these trajectories. Parent well-being was based on parent depressive and anxiety symptoms and family resources (i.e., family mastery and social support). METHODS: Parents of 259 children with drug-resistant epilepsy (105 of whom eventually had surgery) were recruited from eight epilepsy centers across Canada at the time of their evaluation for epilepsy surgery candidacy. Participants were assessed at baseline and 6-month, 1-year, and 2-year follow-up. The trajectories of parents' depressive symptoms, anxiety symptoms, and family resources were jointly estimated using multigroup latent class growth models. RESULTS: The analyses identified three trajectories: an optimal-stable group with no/minimal depressive or anxiety symptoms, and high family resources that remained stable over time; a mild-decreasing-plateau group with mild depressive and anxiety symptoms that decreased over time then plateaued, and intermediate family resources that remained stable; and a moderate-decreasing group with moderate depressive and anxiety symptoms that decreased slightly, and low family resources that remained stable over time. Parents of children with higher health-related quality of life, fathers, and parents who had higher household income were more likely to have better trajectories of well-being. Treatment type was not associated with the trajectory groups, but parents whose children were seizure-free at the time of the last follow-up were more likely to have better trajectories (optimal-stable or mild-decreasing-plateau trajectories). SIGNIFICANCE: This study documented distinct trajectories of parent well-being, from the time of the child's evaluation for epilepsy surgery. Parents who present with anxiety and depressive symptoms and low family resources do not do well over time. They should be identified and offered supportive services early in their child's epilepsy treatment history.


Asunto(s)
Epilepsia Refractaria , Epilepsia , Niño , Humanos , Estudios Longitudinales , Calidad de Vida , Padres , Epilepsia Refractaria/cirugía , Epilepsia/diagnóstico , Depresión
4.
Epilepsia ; 64(8): 2162-2171, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37212692

RESUMEN

OBJECTIVES: The purpose of this longitudinal cohort study was to examine the variables that influence health-related quality of life (HRQOL) after epilepsy surgery in children. We examined whether treatment type (surgical vs medical therapy) and seizure control are related to other variables that have been shown to influence HRQOL, namely depressive symptoms in children with epilepsy or their parents, and the availability of family resources. METHODS: In total, 265 children with drug-resistant epilepsy were recruited from eight epilepsy centers across Canada at the time of their evaluation for candidacy for epilepsy surgery and were assessed at baseline, 6-month, 1-year, and 2-year follow-up. Parents completed the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) and measures of family resources and depression; children completed depression inventories. Causal mediation analyses using natural effect models were used to evaluate the extent to which the relationship between treatment and HRQOL was explained by seizure control, child and parent depressive symptoms, and family resources. RESULTS: Overall, 111 children underwent surgery and 154 were treated with medical therapy only. The HRQOL scores of surgical patients were 3.4 points higher (95% confidence interval [CI]: -0.2, 7.0) relative to medical patients at the 2-year follow-up after adjusting for baseline covariates, with 66% of the effect of surgery attributed to seizure control. Child or parent depressive symptoms and family resources had negligible mediation effects between treatment and HRQOL. The effect of seizure control on HRQOL was not mediated by child or parent depressive symptoms, or by family resources. SIGNIFICANCE: The findings demonstrate that seizure control is on the causal pathway between epilepsy surgery and improved HRQOL in children with drug-resistant epilepsy. However, child and parent depressive symptoms and family resources were not significant mediators. The results highlight the importance of achieving seizure control to improve HRQOL.


Asunto(s)
Epilepsia Refractaria , Epilepsia , Niño , Humanos , Calidad de Vida , Estudios Longitudinales , Epilepsia/tratamiento farmacológico , Epilepsia/cirugía , Epilepsia/diagnóstico , Estudios de Cohortes , Epilepsia Refractaria/cirugía , Encuestas y Cuestionarios , Convulsiones
5.
Epilepsia ; 64(1): 114-126, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-36318088

RESUMEN

OBJECTIVE: Minimally invasive magnetic resonance-guided laser interstitial thermal therapy (MRgLITT) has been proposed as an alternative to open epilepsy surgery, to address concerns regarding the risk of open surgery. Our primary hypothesis was that seizure freedom at 1 year after MRgLITT is noninferior to open surgery in children with drug-resistant epilepsy (DRE). The secondary hypothesis was that MRgLITT has fewer complications and shorter hospitalization than surgery. The primary objective was to compare seizure outcome of MRgLITT to open surgery in children with DRE. The secondary objective was to compare complications and length of hospitalization of the two treatments. METHODS: This retrospective multicenter cohort study included children with DRE treated with MRgLITT or open surgery with 1-year follow-up. Exclusion criteria were corpus callosotomy, neurostimulation, multilobar or hemispheric surgery, and lesion with maximal dimension > 60 mm. MRgLITT patients were propensity matched to open surgery patients. The primary outcome was seizure freedom at 1 year posttreatment. The difference in seizure freedom was compared using noninferiority test, with noninferiority margin of -10%. The secondary outcomes were complications and length of hospitalization. RESULTS: One hundred eighty-five MRgLITT patients were matched to 185 open surgery patients. Seizure freedom at 1 year follow-up was observed in 89 of 185 (48.1%) MRgLITT and 114 of 185 (61.6%) open surgery patients (difference = -13.5%, one-sided 97.5% confidence interval = -23.8% to ∞, pNoninferiority  = .79). The lower confidence interval boundary of -23.8% was below the prespecified noninferiority margin of -10%. Overall complications were lower in MRgLITT compared to open surgery (10.8% vs. 29.2%, respectively, p < .001). Hospitalization was shorter for MRgLITT than open surgery (3.1 ± 2.9 vs. 7.2 ± 6.1 days, p < .001). SIGNIFICANCE: Seizure outcome of MRgLITT at 1 year posttreatment was inferior to open surgery. However, MRgLITT has the advantage of better safety profile and shorter hospitalization. The findings will help counsel children and parents on the benefits and risks of MRgLITT and contribute to informed decision-making on treatment options.


Asunto(s)
Epilepsia Refractaria , Terapia por Láser , Convulsiones , Niño , Humanos , Epilepsia Refractaria/cirugía , Epilepsia Refractaria/terapia , Terapia por Láser/métodos , Imagen por Resonancia Magnética , Estudios Retrospectivos , Convulsiones/prevención & control , Resultado del Tratamiento
6.
BMC Public Health ; 23(1): 1591, 2023 08 22.
Artículo en Inglés | MEDLINE | ID: mdl-37605166

RESUMEN

BACKGROUND: Racial and ethnic inequalities in all-cause mortality exist, and individual-level lifestyle factors have been proposed to contribute to these inequalities. In this study, we evaluate the extent to which the association between race and ethnicity and all-cause mortality can be explained by differences in the exposure and vulnerability to harmful effects of different lifestyle factors. METHODS: The 1997-2014 cross-sectional, annual US National Health Interview Survey (NHIS) linked to the 2015 National Death Index was used. NHIS reported on race and ethnicity (non-Hispanic White, non-Hispanic Black, and Hispanic/Latinx), lifestyle factors (alcohol use, smoking, body mass index, physical activity), and covariates (sex, age, education, marital status, survey year). Causal mediation using an additive hazard and marginal structural approach was used. RESULTS: 465,073 adults (18-85 years) were followed 8.9 years (SD: 5.3); 49,804 deaths were observed. Relative to White adults, Black adults experienced 21.7 (men; 95%CI: 19.9, 23.5) and 11.5 (women; 95%CI: 10.1, 12.9) additional deaths per 10,000 person-years whereas Hispanic/Latinx women experienced 9.3 (95%CI: 8.1, 10.5) fewer deaths per 10,000 person-years; no statistically significant differences were identified between White and Hispanic/Latinx men. Notably, these differences in mortality were partially explained by both differential exposure and differential vulnerability to the lifestyle factors among Black women, while different effects of individual lifestyle factors canceled each other out among Black men and Hispanic/Latinx women. CONCLUSIONS: Lifestyle factors provide some explanation for racial and ethnic inequalities in all-cause mortality. Greater attention to structural, life course, healthcare, and other factors is needed to understand determinants of inequalities in mortality and to advance health equity.


Asunto(s)
Etnicidad , Estilo de Vida , Mortalidad , Adulto , Femenino , Humanos , Masculino , Consumo de Bebidas Alcohólicas , Estudios Transversales , Grupos Raciales , Adolescente , Adulto Joven , Persona de Mediana Edad , Anciano , Anciano de 80 o más Años
7.
BMC Med ; 20(1): 405, 2022 10 24.
Artículo en Inglés | MEDLINE | ID: mdl-36280833

RESUMEN

BACKGROUND: The ongoing opioid epidemic and increases in alcohol-related mortality are key public health concerns in the USA, with well-documented inequalities in the degree to which groups with low and high education are affected. This study aimed to quantify disparities over time between educational and racial and ethnic groups in sex-specific mortality rates for opioid, alcohol, and combined alcohol and opioid poisonings in the USA. METHODS: The 2000-2019 Multiple Cause of Death Files from the National Vital Statistics System (NVSS) were used alongside population counts from the Current Population Survey 2000-2019. Alcohol, opioid, and combined alcohol and opioid poisonings were assigned using ICD-10 codes. Sex-stratified generalized least square regression models quantified differences between educational and racial and ethnic groups and changes in educational inequalities over time. RESULTS: Between 2000 and 2019, there was a 6.4-fold increase in opioid poisoning deaths, a 4.6-fold increase in combined alcohol and opioid poisoning deaths, and a 2.1-fold increase in alcohol poisoning deaths. Educational inequalities were observed for all poisoning outcomes, increasing over time for opioid-only and combined alcohol and opioid mortality. For non-Hispanic White Americans, the largest educational inequalities were observed for opioid poisonings and rates were 7.5 (men) and 7.2 (women) times higher in low compared to high education groups. Combined alcohol and opioid poisonings had larger educational inequalities for non-Hispanic Black men and women (relative to non-Hispanic White), with rates 8.9 (men) and 10.9 (women) times higher in low compared to high education groups. CONCLUSIONS: For all types of poisoning, our analysis indicates wide and increasing gaps between those with low and high education with the largest inequalities observed for opioid-involved poisonings for non-Hispanic Black and White men and women. This study highlights population sub-groups such as individuals with low education who may be at the highest risk of increasing mortality from combined alcohol and opioid poisonings. Thereby the findings are crucial for the development of targeted public health interventions to reduce poisoning mortality and the socioeconomic inequalities related to it.


Asunto(s)
Analgésicos Opioides , Etnicidad , Masculino , Estados Unidos/epidemiología , Femenino , Humanos , Escolaridad , Población Blanca , Etanol
8.
Epilepsia ; 62(12): 2932-2940, 2021 12.
Artículo en Inglés | MEDLINE | ID: mdl-34608636

RESUMEN

OBJECTIVE: Hemispheric surgeries are an effective treatment option to control seizures for children with hemimegalencephaly (HME); however, not enough is known about their cognitive outcomes. This study aimed to delineate the cognitive and language outcomes after hemispherectomy for HME and identify the clinical characteristics associated with cognition and language. METHODS: Data came from the Global Pediatric Epilepsy Surgery Registry, a patient-driven web-based registry for epilepsy surgery. We focused on children's functional status, assessed through parent-reports of cognitive and language skills. Parents also reported on their satisfaction with surgery, their child's quality of life, and various demographic, clinical, and surgery characteristics. RESULTS: Parents of 45 children (40% female) participated. Children were aged 2.6 (SD 6.5) months at seizure onset, 10.8 (SD 12.7) months at hemispherectomy, and 8.7 (SD 4.8) years at follow-up, at which point 68% were seizure-free. We found that at follow-up, 43% had average or mildly impaired cognition, 26% could speak age appropriately, and 21% had satisfactory reading skills. A total of 55%, 43%, and 17% of children first babbled, spoke their first words, and started speaking in sentences at an age-appropriate period, respectively. Children who had undergone a right hemisphere resection and those who were older at epilepsy onset were more likely to have better cognitive and language outcomes. SIGNIFICANCE: Children with HME have delayed language milestones and continue to require significant language and literacy support long-term after cerebral hemispherectomy.


Asunto(s)
Epilepsia , Hemimegalencefalia , Hemisferectomía , Niño , Cognición , Epilepsia/tratamiento farmacológico , Epilepsia/cirugía , Femenino , Hemimegalencefalia/cirugía , Humanos , Lenguaje , Masculino , Calidad de Vida , Convulsiones/cirugía , Resultado del Tratamiento
9.
BMC Gastroenterol ; 21(1): 115, 2021 Mar 09.
Artículo en Inglés | MEDLINE | ID: mdl-33750299

RESUMEN

BACKGROUND: Liver transplantation (LT) remains the curative treatment for symptomatic Polycystic Liver Disease (PCLD) patients and is associated with excellent survival rates. The aim of the study is to review the Ontario experience in LT for PCLD. METHODS: A retrospective study was performed from pre-existing LT databases from the LT Units at Toronto General Hospital and London Health Sciences Center, which are the two LT programs in Ontario, Canada. This database contains demographic, clinical parameters and follow-up of all patients transplanted for PCLD. Data was extracted for patients who underwent LT between January 2000-April 2017 and included follow up until December 31st, 2018. RESULTS: A total of 3560 patients underwent LT, of whom 51 (1.4%) had PCLD and met inclusion criteria. 43 (84%) of these patients were female. The median physiologic Model for End Stage Liver Disease (MELD-Na) score at time of referral was 13 (IQR = 7-22), however all patients required MELD-Na exception points to receive LT. The median age of transplant was 62 years (IQR = 59-64) for male vs. 52 (IQR = 45-56) for female patients. 33 (65%) of our cohort had PCLD while 9 (17.5%) had ADPKD and 9 (17.5%) had both diseases. 39 (76%) had LT due to symptoms of mass effect, while 8 (16%) had portal hypertensive complications. After a median follow-up of 6.3 (IQR = 2.9-12.5) years, the probability of survival was 96% (95% CI: 90%, 100%). Log-rank test, comparing survival analysis between males and females did not show a statistically significant difference (p = 0.26). CONCLUSION: Most patients underwent LT for PCLD due to symptoms of mass effect with women being more likely than men to undergo LT. LT for PCLD had excellent long-term survival.


Asunto(s)
Enfermedad Hepática en Estado Terminal , Trasplante de Hígado , Adulto , Quistes , Femenino , Humanos , Hepatopatías , Masculino , Persona de Mediana Edad , Ontario/epidemiología , Estudios Retrospectivos , Índice de Severidad de la Enfermedad , Resultado del Tratamiento
10.
Dev Med Child Neurol ; 63(6): 690-696, 2021 06.
Artículo en Inglés | MEDLINE | ID: mdl-33501640

RESUMEN

AIM: To simultaneously evaluate long-term outcomes of children with drug-resistant epilepsy (DRE) across multiple cognitive domains and compare the characteristics of participants sharing a similar cognitive profile. METHOD: Participants were adolescents and young adults (AYAs) diagnosed with DRE in childhood, who completed a comprehensive neuropsychological battery evaluating intelligence, memory, academic, and language skills at the time of surgical candidacy evaluation and at long-term follow-up (4-11y later). Hierarchical k-means clustering identified subgroups of AYAs showing a unique pattern of cognitive functioning in the long-term. RESULTS: Participants (n=93; mean age 20y 1mo [standard deviation {SD} 4y 6mo]; 36% male) were followed for 7 years (SD 2y 4mo), of whom 65% had undergone resective epilepsy surgery. Two subgroups with unique patterns of cognitive functioning were identified, which could be broadly categorized as 'impaired cognition' (45% of the sample) and 'average cognition' (55% of the sample); the mean z-score across cognitive measures at follow-up was -1.86 (SD 0.62) and -0.23 (SD 0.54) respectively. Surgical and non-surgical patients were similar with respect to seizure control and their long-term cognitive profile. AYAs in the average cognition cluster were more likely to have better cognition at baseline, an older age at epilepsy onset, and better seizure control at follow-up. INTERPRETATION: The underlying abnormal neural substrate and seizure control were largely associated with long-term outcomes across cognitive domains.


Asunto(s)
Cognición/fisiología , Epilepsia Refractaria/psicología , Convulsiones/psicología , Adolescente , Adulto , Edad de Inicio , Niño , Femenino , Humanos , Lenguaje , Masculino , Memoria/fisiología , Pruebas Neuropsicológicas , Adulto Joven
11.
Epilepsia ; 61(10): 2254-2264, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-32924172

RESUMEN

OBJECTIVE: To prospectively delineate self-reported health-related quality of life (HRQOL) of adolescents and young adults (AYAs) 8 and 10 years after an epilepsy diagnosis and evaluate the degree of AYA-parent agreement in ratings of AYA's HRQOL. METHODS: Data came from the Health-Related Quality of Life in Children with Epilepsy Study (HERQULES), a 10-year longitudinal study of children, aged 4-12 years, with newly diagnosed epilepsy. Epilepsy-specific HRQOL was self-reported by AYA 8 and 10 years after diagnosis and by parents at multiple time points throughout the 10-year follow-up. Measurers of HRQOL over time were analyzed using a linear mixed-effect model approach. AYA-parent agreement was evaluated using intraclass correlation coefficient (ICC) and Bland-Altman plots. RESULTS: A total of 165 AYAs participated at long-term follow-up. There was considerable heterogeneity among AYA's HRQOL, and as a group, there was no significant change in HRQOL from the 8- to 10-year follow-up. Household income at the time of diagnosis, seizure control at follow-up, and a history of emotional problems (anxiety/depression) were independent predictors of HRQOL at follow-up. AYA-parent agreement on AYA's HRQOL was moderate (ICC 0.62, 95% CI 0.51-0.71), although considerable differences were observed at the individual level. AYA-parent agreement varied with AYA's and parent's age, seizure control, and family environment. SIGNIFICANCE: In the long-term after a diagnosis of epilepsy, AYAs report stable HRQOL over time at the group level, although notable individual differences exist. Seizure control, anxiety/depression, and family environment meaningfully impact AYA's long-term HRQOL. AYA and parent reports on HRQOL are similar at the group level, although they cannot be used interchangeably, given the large individual differences observed.


Asunto(s)
Epilepsia/epidemiología , Epilepsia/psicología , Relaciones Padres-Hijo , Padres/psicología , Calidad de Vida/psicología , Autoinforme , Adolescente , Adulto , Edad de Inicio , Canadá/epidemiología , Niño , Preescolar , Epilepsia/diagnóstico , Femenino , Estudios de Seguimiento , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Adulto Joven
12.
Epilepsia ; 61(7): 1453-1463, 2020 07.
Artículo en Inglés | MEDLINE | ID: mdl-32533789

RESUMEN

OBJECTIVE: This study estimated trajectories of health-related quality of life (HRQOL) over a 10-year period among children newly diagnosed with epilepsy. We also modeled the characteristics of children, parents, and families associated with each identified trajectory. METHODS: Data came from the HERQULES (Health-Related Quality of Life in Children With Epilepsy Study), a Canada-wide prospective cohort study of children (aged 4-12 years) with newly diagnosed epilepsy. Parents reported on their children's HRQOL at diagnosis, and at 0.5-, 1-, 2-, 8-, and 10-year follow-ups using the Quality of Life in Childhood Epilepsy Questionnaire-55. Trajectories of HRQOL were identified using latent class growth models. Characteristics of children, parents, and families at the time of diagnosis that were associated with each trajectory were identified using multinomial logistic regression. RESULTS: A total of 367 children were included. Four unique HRQOL trajectories were identified; 11% of the cohort was characterized by low and stable scores, 18% by intermediate and stable scores, 35% by intermediate scores that increased then plateaued, and 43% by high scores that increased then plateaued. Absence of comorbidities, less severe epilepsy, and better family environment (greater satisfaction with family relationships and fewer family demands) at the time of diagnosis were associated with better long-term HRQOL trajectories. Although the analyses used estimates for missing values and accounted for any nonrandom attrition, the proportion of children with poorer HRQOL trajectories may be underestimated. SIGNIFICANCE: Children with new onset epilepsy are heterogenous and follow unique HRQOL trajectories over the long term. Overall, HRQOL improves for the majority in the first 2 years after diagnosis, with these improvements sustained over the long term.


Asunto(s)
Epilepsia/epidemiología , Epilepsia/psicología , Calidad de Vida/psicología , Adolescente , Canadá/epidemiología , Niño , Preescolar , Estudios de Cohortes , Epilepsia/diagnóstico , Femenino , Estudios de Seguimiento , Humanos , Masculino , Estudios Prospectivos , Factores de Tiempo , Adulto Joven
13.
Epilepsy Behav ; 104(Pt A): 106904, 2020 03.
Artículo en Inglés | MEDLINE | ID: mdl-32000098

RESUMEN

OBJECTIVE: The objective of the study was to validate the parent-proxy reported Quality of Life in Childhood Epilepsy Questionnaire (QOLCE) in a sample of young adults with a history of childhood-onset epilepsy, allowing for the utilization of a consistent informant (the parent) across the youths' stages of development. The 55-item (QOLCE-55) and 16-item versions (QOLCE-16) were evaluated. METHODS: Data came from 134 young adults (aged 18.0 to 28.5 years) with childhood-onset epilepsy, recruited through community and tertiary care centers across Canada. Confirmatory factor analysis (CFA) was used to assess the higher-order factor structure of the QOLCE. Cronbach's alpha was used to evaluate internal consistency. Convergent validity was assessed by intraclass correlation coefficients (ICC) with the youth self-reported Quality of Life in Epilepsy Questionnaire (QOLIE-31-P). RESULTS: The higher-order factor structure of the QOLCE-55 and QOLCE-16 demonstrated adequate fit: QOLCE-55 comparative fit index (CFI) = 0.968, Tucker-Lewis index (TLI) = 0.966; and root mean square of approximation (RMSEA) = 0.061; QOLCE-16 CFI = 0.966, TFI = 0.959, RMSEA = 0.141. Higher-order factor loadings were strong, ranging from 0.71 to 0.90. Internal consistency was excellent for the total score (αQOLCE-55 = 0.97; αQOLCE-16 = 0.93) and good-excellent for each subscale (α > 78). Convergent validity was moderate to good for the total score (ICC > 0.72) and each subscale (ICC > 0.51). SIGNIFICANCE: These findings provide support for the use of the QOLCE-55 and QOLCE-16 among young adults with a history of childhood-onset epilepsy. Utilizing a consistent measure and informant across the stages of development is essential to reliably evaluate change over time.


Asunto(s)
Epilepsia/epidemiología , Epilepsia/psicología , Padres/psicología , Calidad de Vida/psicología , Encuestas y Cuestionarios/normas , Adolescente , Adulto , Canadá/epidemiología , Estudios de Cohortes , Análisis Factorial , Femenino , Humanos , Masculino , Estudios Prospectivos , Psicometría , Reproducibilidad de los Resultados , Autoinforme/normas , Adulto Joven
14.
Harm Reduct J ; 17(1): 35, 2020 06 05.
Artículo en Inglés | MEDLINE | ID: mdl-32503573

RESUMEN

BACKGROUND: The rising incidence of infective endocarditis (IE) among people who inject drugs (PWID) has been a major concern across North America. The coincident rise in IE and change of drug preference to hydromorphone controlled-release (CR) among our PWID population in London, Ontario intrigued us to study the details of injection practices leading to IE, which have not been well characterized in literature. METHODS: A case-control study, using one-on-one interviews to understand risk factors and injection practices associated with IE among PWID was conducted. Eligible participants included those who had injected drugs within the last 3 months, were > 18 years old and either never had or were currently admitted for an IE episode. Cases were recruited from the tertiary care centers and controls without IE were recruited from outpatient clinics and addiction clinics in London, Ontario. RESULTS: Thirty three cases (PWID IE+) and 102 controls (PWID but IE-) were interviewed. Multivariable logistic regressions showed that the odds of having IE were 4.65 times higher among females (95% CI 1.85, 12.28; p = 0.001) and 5.76 times higher among PWID who did not use clean injection equipment from the provincial distribution networks (95% CI 2.37, 14.91; p < 0.001). Injecting into multiple sites and heating hydromorphone-CR prior to injection were not found to be significantly associated with IE. Hydromorphone-CR was the most commonly injected drug in both groups (90.9% cases; 81.4% controls; p = 0.197). DISCUSSION: Our study highlights the importance of distributing clean injection materials for IE prevention. Furthermore, our study showcases that females are at higher risk of IE, which is contrary to the reported literature. Gender differences in injection techniques, which may place women at higher risk of IE, require further study. We suspect that the very high prevalence of hydromorphone-CR use made our sample size too small to identify a significant association between its use and IE, which has been established in the literature.


Asunto(s)
Endocarditis/epidemiología , Trastornos Relacionados con Opioides/epidemiología , Abuso de Sustancias por Vía Intravenosa/epidemiología , Adulto , Estudios de Casos y Controles , Comorbilidad , Femenino , Humanos , Incidencia , Entrevistas como Asunto , Masculino , Ontario/epidemiología , Factores de Riesgo , Factores Sexuales
15.
Br J Psychiatry ; 214(4): 218-224, 2019 04.
Artículo en Inglés | MEDLINE | ID: mdl-30482255

RESUMEN

BACKGROUND: Late-life depression (LLD) is a disabling disorder and antidepressants are ineffective in as many as 60% of cases. Converging evidence shows a strong correlation between LLD and subsequent risk of cardiovascular disease. There is a need for new, well-tolerated, non-pharmacological augmentation interventions that can treat depressive symptoms as well as improve heart rate variability (HRV), an important prognostic marker for development of subsequent cardiovascular disease. Meditation-based techniques are of interest based on positive findings in other samples.AimsWe aimed to assess the efficacy of Sahaj Samadhi meditation (SSM), an underevaluated, standardised and manualised meditation intervention, on HRV and depressive symptoms. METHOD: Eighty-three men and women aged 60-85 years, with mild to moderate depression and receiving treatment as usual (TAU) were randomised to either the SSM or TAU arm. Those allocated to SSM attended 4 consecutive days of group meditation training, using personalised mantras followed by 11 weekly reinforcement sessions. HRV and Hamilton Rating Scale for Depression (HRSD; 17-item) score were measured at baseline and 12 weeks. RESULTS: All time and frequency domain measures of HRV did not significantly change in either arm. However, there was significant improvement in the SSM arm, compared with TAU, on the HRSD (difference in mean, 2.66; 95% CI 0.26-5.05; P = 0.03). CONCLUSIONS: Compared with TAU, SSM is associated with improvements in depressive symptoms but does not significantly improve HRV in patients with LLD. These results need to be replicated in subsequent studies incorporating a group-based, active control arm.Declaration of interestR.I.N. is the Director of Research and Health Promotion for the Art of Living Foundation, Canada and supervised the staff providing Sahaj Samadhi meditation. S.R. has received research funding from Satellite Healthcare for a mindfulness meditation trial in patients on haemodialysis. The remaining authors report no financial or other relationship relevant to the subject of this article.


Asunto(s)
Depresión/terapia , Frecuencia Cardíaca , Meditación , Anciano , Anciano de 80 o más Años , Depresión/fisiopatología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Ontario , Escalas de Valoración Psiquiátrica , Calidad de Vida , Autocuidado
16.
Epilepsia ; 60(2): 358-366, 2019 02.
Artículo en Inglés | MEDLINE | ID: mdl-30645767

RESUMEN

OBJECTIVE: Parental depression significantly impacts children's health and well-being. This study aimed to (1) estimate the prevalence of depressive symptoms, at six time points, among mothers over the first 10 years after their child was diagnosed with epilepsy; (2) identify trajectories of maternal depressive symptoms over time; and (3) identify baseline factors associated with each trajectory. METHODS: Data came from the Health-Related Quality of Life in Children with Epilepsy Study (HERQULES), a Canada-wide prospective cohort study. Data on child, parent, and family characteristics were collected at the time of diagnosis, and follow-ups at 0.5, 1, 2, 8, and 10 years. Maternal depressive symptoms were measured using the Center for Epidemiological Studies Depression Scale. Trajectories of depressive symptoms were evaluated using latent class growth modeling, and multinomial logistic regression was used to identify baseline factors associated with each trajectory. RESULTS: A total of 356 mothers participated in the study, of whom 57% scored in the at-risk range for major depression disorder (period-prevalence). Four unique trajectories were identified as follows: "Low-Stable" (29% of mothers), "Intermediate-Stable" (46%), "High-Stable" (20%), and "High-Decreasing" (5%). Positive family environment was consistently associated with a better trajectory of depressive symptoms over time; other significant factors included type of seizures, child cognitive comorbidity, maternal age, and maternal education. SIGNIFICANCE: A substantial proportion of mothers of children with epilepsy are at risk for depression, and this risk is stable over the long term. Family environment at the time of diagnosis has long-term and persistent effects and may be an ideal target for interventions.


Asunto(s)
Depresión Posparto/epidemiología , Depresión/epidemiología , Epilepsia/epidemiología , Madres , Adulto , Depresión/psicología , Depresión Posparto/psicología , Femenino , Humanos , Estudios Longitudinales , Masculino , Prevalencia , Escalas de Valoración Psiquiátrica , Calidad de Vida , Encuestas y Cuestionarios
17.
Epilepsy Behav ; 92: 297-305, 2019 03.
Artículo en Inglés | MEDLINE | ID: mdl-30731296

RESUMEN

OBJECTIVES: This review aimed to describe social outcomes in adulthood for people with a history of childhood-onset epilepsy and identify factors associated with these outcomes; focused on educational attainment, employment, income/financial status, independence/living arrangement, romantic relationships, parenthood, and friendships. METHODS: A comprehensive search of MEDLINE, EMBASE, and PsycINFO was conducted, as well as forward and backward citation tracking. A total of 45 articles met inclusion criteria. Random effects meta-analyses were conducted, and subgroup analyses evaluated outcomes for people with epilepsy (PWE) with good prognosis (e.g., normal intelligence, 'epilepsy-only') and poor prognosis (e.g., intellectual disability, Dravet syndrome), and those who underwent epilepsy surgery in childhood. RESULTS: Among all PWE, 73% (95% confidence interval [CI]: 64-82%) completed secondary school education, 63% (95%CI: 56-70%) were employed; 74% (95%CI: 68-81%) did not receive governmental financial assistance; 32% (95%CI: 25-39%) were in romantic relationships; 34% (95%CI: 24-45%) lived independently; 21% (95%CI:12-33%) had children, and 79% (95%CI: 71-87%) had close friend(s). People with epilepsy often fared worse relative to healthy controls. Among PWE with a good prognosis, a comparable number of studies reported similar/better outcomes relative to controls as reported poorer outcomes. The most consistent predictor of poorer outcomes was the presence of cognitive problems; results of studies evaluating seizure control were equivocal. CONCLUSION: People with epilepsy with a good prognosis may show similar social outcomes as controls, though robust conclusions are difficult to make given the extant literature. Seizure control does not guarantee better outcomes. There is a need for more studies evaluating prognostic factors and studies with control groups to facilitate appropriate comparisons.


Asunto(s)
Empleo/psicología , Epilepsia/psicología , Conducta Social , Adulto , Niño , Empleo/tendencias , Epilepsia/complicaciones , Epilepsia/diagnóstico , Femenino , Humanos , Discapacidad Intelectual/diagnóstico , Discapacidad Intelectual/etiología , Discapacidad Intelectual/psicología , Masculino
18.
Epilepsy Behav ; 82: 38-45, 2018 05.
Artículo en Inglés | MEDLINE | ID: mdl-29579553

RESUMEN

OBJECTIVES: This systematic review aimed to 1) describe the quality of life (QOL) of parents of children with childhood-onset epilepsy (CWE), 2) identify factors associated with parental QOL, and 3) evaluate the association between parents' QOL and children's psychological well-being. METHODS: We conducted a comprehensive search of MEDLINE, EMBASE, and PsycINFO and conducted forward and backward citation tracking. A total of 15 articles met inclusion criteria. Parents' QOL was compared with population norms, healthy controls, and parents of children with other chronic conditions. Factors associated with parental QOL were systematically evaluated. RESULTS: Heterogeneity in study design and reporting prevented a meta-analytic synthesis of results. The majority of studies found that parents of CWE had poorer QOL relative to healthy controls or population norms and similar QOL as parents of children with other chronic conditions. In addition, poorer parental QOL was consistently associated with greater parental anxiety and depressive symptoms and poorer socioeconomic status and child QOL. Mothers had poorer QOL relative to fathers. Seizure control was not consistently associated with parental QOL. Results highlight the impact of family environment and psychosocial factors. SIGNIFICANCE: This review suggests that parents of CWE have compromised QOL. The results are in line with previous research showing the interdependent nature of psychosocial and medical factors, with psychosocial factors playing a critical role in child and parental QOL and well-being. Interventions targeting the family unit are warranted, and healthcare providers should be aware of the bidirectional relationship of epilepsy, family environment, and child/parent health and well-being.


Asunto(s)
Epilepsia/psicología , Padres/psicología , Calidad de Vida/psicología , Adolescente , Niño , Enfermedad Crónica , Depresión/epidemiología , Depresión/psicología , Epilepsia/epidemiología , Epilepsia/terapia , Femenino , Humanos , Masculino
19.
Int J Geriatr Psychiatry ; 33(10): 1397-1402, 2018 10.
Artículo en Inglés | MEDLINE | ID: mdl-30043432

RESUMEN

OBJECTIVES: The objective of this study was to assess the prevalence of orthostatic hypotension (OH) in a sample of late life depression (LLD) patients and to determine the validity of a standardized questionnaire, the Orthostatic Hypotension Questionnaire (OHQ). Secondarily, we wished to assess variables associated with OH. METHODS: We conducted a cross-sectional study on 82 consecutive geriatric outpatients presenting with LLD. OH was defined as a fall in systolic blood pressure of greater than 20 mm Hg and/or 10 mm Hg on diastolic blood pressure on an orthostatic stress test from sitting to standing. Logistic regressions were used to identify factors associated with OH. RESULTS: The prevalence of OH as measured on the orthostatic stress test and on the OHQ was 28% and 57%, respectively. The sensitivity, specificity, accuracy, positive predictive value, and negative predictive value of the OHQ were 69.6% (95% CI 47%-87%), 47.5% (95%CI 34%-61%), 0.54 (95% CI: 0.43-0.64), 34% (95%CI 21%-49%), and 80% (95%CI 63%-92%), respectively. Females were more likely to have OH (OR: 3.96, 95%CI 1.06-14.89, P = .041), and those married or in a common-law relationship were less likely to have OH (OR: 0.25, 95% CI 0.08-0.72, P = .011). CONCLUSIONS: OH is common in patients with LLD conferring them a risk of gait instability and falls. Females had a higher risk of having OH while participants who were married or in a common-law relationship were less likely to have OH. Although the OHQ is a quick to administer paper-based screening test, it did not show adequate diagnostic accuracy in patients with LLD seen in a routine psychiatry clinic.


Asunto(s)
Trastorno Depresivo/fisiopatología , Hipotensión Ortostática/diagnóstico , Hipotensión Ortostática/epidemiología , Tamizaje Masivo/métodos , Accidentes por Caídas/prevención & control , Anciano , Anciano de 80 o más Años , Presión Sanguínea , Canadá/epidemiología , Estudios Transversales , Femenino , Evaluación Geriátrica/métodos , Humanos , Modelos Logísticos , Masculino , Tamizaje Masivo/normas , Valor Predictivo de las Pruebas , Prevalencia , Sensibilidad y Especificidad , Encuestas y Cuestionarios/normas
20.
Qual Life Res ; 27(4): 969-977, 2018 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-29305781

RESUMEN

PURPOSE: Epilepsy in childhood extends far beyond seizures and affects child and parental well-being. The long-term impact of childhood-onset epilepsy on parental well-being is unknown. This study assessed health-related quality of life (HRQOL) in mothers 10 years after their child's diagnosis of epilepsy. METHODS: Data come from the Health-Related Quality of Life in Children with Epilepsy Study, a multicenter prospective cohort study of children with newly diagnosed epilepsy. Mothers completed a mailed questionnaire at the 10-year follow-up, which included the Short-Form Health Survey (SF-12-v2) to evaluate the physical and mental health components of their HRQOL. Block-wise linear regressions identified child/epilepsy, maternal/family, and maternal psychosocial factors associated with mothers' HRQOL. RESULTS: A total of 159 mothers participated in this study (46% of the sample assessed at baseline). At follow-up, 69% of youth had been seizure free for the past 5 years. Mothers scored similarly to population norms (mean: 50, SD: 10) on the mental health subscale (mean: 49.5, SD: 9.3) and significantly better on the physical health subscale (mean: 53.0, SD: 7.6). Better family resources were associated with higher (better) scores on the physical health subscale (B = 0.20; 95% CI 0.03, 0.36). Better family functioning (B = 0.34; 95% CI 0.06, 0.62), fewer maternal depressive symptoms (B = 0.33; 95% CI 0.20, 0.47), and perception of less stress (B = 0.70; 95% CI 0.52, 0.88) were associated with higher (better) scores on the mental health subscale. CONCLUSION: Ten years after the diagnosis of epilepsy in children, the HRQOL of mothers was similar to reports from women in the general population. This study identified factors contributing to better maternal HRQOL and highlights the importance of family environment over epilepsy-related variables.


Asunto(s)
Epilepsia/psicología , Encuestas Epidemiológicas/métodos , Madres/psicología , Perfil de Impacto de Enfermedad , Adolescente , Adulto , Niño , Estudios de Cohortes , Femenino , Humanos , Masculino , Estudios Prospectivos , Encuestas y Cuestionarios , Factores de Tiempo
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