Quality of Life Changes and Health Care Charges Among Youth With Epilepsy.
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ABSTRACT:
SUBMITTER: Ryan JL
PROVIDER: S-EPMC4982539 | biostudies-literature | 2016 Sep
REPOSITORIES: biostudies-literature
Publications
Quality of Life Changes and Health Care Charges Among Youth With Epilepsy.
Ryan Jamie L JL McGrady Meghan E ME Guilfoyle Shanna M SM Follansbee-Junger Katherine K Peugh James L JL Loiselle Kristin A KA Arnett Alex D AD Modi Avani C AC
Journal of pediatric psychology 20151026 8
<h4>Objective</h4>To examine differences in health care charges following a pediatric epilepsy diagnosis based on changes in health-related quality of life (HRQOL).<h4>Methods</h4>Billing records were obtained for 171 youth [M (SD) age = 8.9 (4.1) years] newly diagnosed with epilepsy. Differences in health care charges among HRQOL groups (stable low, declining, improving, or stable high as determined by PedsQL(™) scores at diagnosis and 12 months after diagnosis) were examined.<h4>Results</h4>Pa ...[more]
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Project description:ObjectivesTo estimate first-year health care charges for youth with newly diagnosed epilepsy seen within an interdisciplinary pediatric epilepsy team and examine demographic, clinical, and psychosocial predictors of annual charges.MethodsRetrospective chart review was conducted to extract medical, hospital, and physician billing data from the year following an epilepsy diagnosis for 258 patients (aged 2-18 years) seen in a New Onset Seizure Clinic between July 2011 and December 2012. Descriptive statistics were used to estimate per-patient total first-year charges and health care utilization patterns (e.g., hospitalizations, emergency department visits, outpatient visits). Univariate analyses examined differences in health care charges between demographic, clinical, and psychosocial factors. Predictors of health care charges were examined using hierarchical multiple regression analysis.ResultsThe estimated per-patient total first-year health care charge was $20,084 (95% confidence interval [CI] $16,491-$23,677). Charges were higher for patients who reported having seizures since diagnosis ($25,509; 95% CI $20,162-$30,856) and were associated with more antiepileptic drug side effects (r = 0.18; 95% CI 0.03-0.32). Controlling for demographic and clinical factors, poorer baseline health-related quality of life was associated with higher per-patient health care charges (B = -445.40; 95% CI -865 to -25).ConclusionsThe economic impact of pediatric epilepsy in the year following diagnosis is substantial. Cost reduction efforts would be optimized by improving seizure control and targeting health-related quality of life, an outcome amenable to behavioral intervention.
| S-EPMC4540245 | biostudies-literature
Project description:ImportanceHealth-related quality of life (HRQOL) is regarded as a key outcome for evaluating treatment efficacy. However, it is uncertain how HRQOL evolves after epilepsy surgery compared with medical therapy, such as whether it continues to improve over time, improves and then remains stable, or deteriorates after a period of time.ObjectiveTo assess trajectory of HRQOL over 2 years in children with drug-resistant epilepsy (DRE) treated with surgery compared with medical therapy.Design, setting, and participantsProspective cohort study assessing HRQOL longitudinally over 2 years. Participants were children recruited from 8 epilepsy centers in Canada from 2014 to 2019 with suspected DRE aged 4 to 18 years who were evaluated for surgery. Data were analyzed from May 2014 to December 2021.ExposuresEpilepsy surgery or medical therapy.Main outcomes and measuresHRQOL was measured using the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE)-55. HRQOL and seizure frequency were assessed at baseline, 6-month, 1-year, and 2-year follow-ups. Clinical, parent, and family characteristics were assessed at baseline. A linear mixed model was used to evaluate HRQOL over time, adjusting for baseline clinical, parent, and family characteristics.ResultsThere were 111 surgical and 154 medical patients (mean [SD] age at baseline was 11.0 [4.1] years; 118 [45%] were female). At baseline, HRQOL was similar among surgical and medical patients. HRQOL of surgical patients was 3.0 (95% CI, -0.7 to 6.8) points higher at 6-month, 4.9 (95% CI, 0.7 to 9.1) points higher at 1-year, and 5.1 (95% CI, 0.7 to 9.5) points higher at 2-year follow-ups compared with medical patients. Surgical patients experienced greater improvements in social functioning relative to medical patients, but not for cognitive, emotional, and physical functioning. At 2-year follow-up, 72% of surgical patients were seizure-free, compared with 33% of medical patients. Seizure-free patients reported higher HRQOL than those who were not.Conclusions and relevanceThis study provided evidence on the association between epilepsy surgery and children's HRQOL, with improvement in HRQOL occurring within the first year and remaining stable 2 years after surgery. By demonstrating that surgery improved seizure freedom and HRQOL, which has downstream effects such as better educational attainment, reduced health care resource utilization, and health care cost, these findings suggest that the high costs of surgery are justified, and that improved access to epilepsy surgery is necessary.
| S-EPMC10043749 | biostudies-literature
Project description:BackgroundEvidence from high-income countries demonstrates that co-morbid mental disorders in people with epilepsy adversely affect clinical and social outcomes. However, evidence from low-income countries is lacking. The objective of this study was to measure the association between co-morbid mental disorders and quality of life and functioning in people with epilepsy.MethodsA facility-based, community ascertained cross-sectional survey was carried out in selected districts of the Gurage Zone, Southern Ethiopia. Participants were identified in the community and referred to primary health care (PHC) clinics. Those diagnosed by PHC workers were recruited. Co-morbid mental disorders were measured using a standardised, semi-structured clinical interview administered by mental health professionals. The main outcome, quality of life, was measured using the Quality of Life in Epilepsy questionnaire (QOLIE-10p). The secondary outcome, functional disability, was assessed using the 12-item World Health Organization Disability Assessment Schedule (WHODAS-2).ResultsThe prevalence of comorbid mental disorders was 13.9%. Comorbid mental disorders were associated with poorer quality of life (Adjusted (Adj.) β -13.27; 95% CI -23.28 to-3.26) and greater disability (multiplier of WHODAS-2 score 1.62; 95% CI 1.05, 2.50) after adjusting for hypothesised confounding factors. Low or very low relative wealth (Adj. β = -12.57, 95% CI -19.94 to-5.20), higher seizure frequency (Adj.β coef. = -1.92, 95% CI -2.83 to -1.02), and poor to intermediate social support (Adj. β coef. = -9.66, 95% CI -16.51 to -2.81) were associated independently with decreased quality of life. Higher seizure frequency (multiplier of WHODAS-2 score 1.11; 95% CI 1.04, 1.19) was associated independently with functional disability.ConclusionCo-morbid mental disorders were associated with poorer quality of life and impairment, independent of level of seizure control. Integrated and comprehensive psychosocial care is required for better health and social outcomes of people with epilepsy.
| S-EPMC7817054 | biostudies-literature
Project description:The aims of the present study were to examine whether Asian American youth experience disparities in quality of life (QL) compared with Hispanic, African American, and white youth in the general population and to what extent socioeconomic status (SES) mediates any disparities among these racial/ethnic groups. Data were obtained from the Healthy Passages study, in which 4,972 Asian American (148; 3%), Hispanic (1,813; 36%), African American (1,755; 35%), and white (1,256; 25%) fifth-graders were enrolled in a population-based, cross-sectional survey conducted in three U.S. metropolitan areas. Youth reported their own QL using the PedsQL and supplemental scales. Parents reported youth's overall health status as well as parent's education and household income level. Asian American youth experienced worse status than white youth for three of 10 QL and well-being measures, better status than Hispanic youth on six measures, and better status than African American youth on three measures. However, the observed advantages for Asian American youth over Hispanic and African American youth disappeared when the marked SES differences that are also present among these racial/ethnic groups were taken into account. In contrast, the differences between Asian American and white youth remained after adjusting for SES. These findings suggest that the disparities in QL that favor white youth over Asian American youth exist independent of SES and warrant further examination. In contrast, the QL differences that favor Asian American over Hispanic and African American youth may be partly explained by SES. Interpretations are limited by the heterogeneity existing among Asian Americans.
| S-EPMC4831066 | biostudies-other
Project description:Quality of life after critical illness is becoming increasingly important as survival improves. Various measures have been used to study the quality of life of patients discharged from intensive care. We systematically reviewed validated measures of quality of life and their results. We searched PubMed, CENTRAL, CINAHL, Web of Science and Open Grey for studies of quality of life, measured after discharge from intensive care. We categorised studied populations as: general; restricted to level-3 care or critical care beyond 5 days; and septic patients. We included quality of life measured at any time after hospital discharge. We identified 48 studies. Thirty-one studies used the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) and 19 used the EuroQol-5D (EQ-5D); eight used both and nine used alternative validated measures. Follow-up rates ranged from 26-100%. Quality of life after critical care was worse than for age- and sex-matched populations. Quality of life improved for one year after hospital discharge. The aspects of life that improved most were physical function, physical role, vitality and social function. However, these domains were also the least likely to recover to population norms as they were more profoundly affected by critical illness.
| S-EPMC6586053 | biostudies-literature
Project description:ImportanceUtility is a single-value, preference-based measure of health-related quality of life that represents the desirability of a health state relative to being dead or in perfect health. Clinical, funding, and policy decisions rely on measured changes in utility. The benefit of hearing loss treatments may be underestimated because existing utility measures fail to capture important changes in quality of life associated with hearing loss.ObjectiveTo develop a comprehensive profile of items that describe how quality of life is associated with hearing loss and its treatments that can be used to generate hearing-related quality of life measures, including a novel utility measure.Design, setting, and participantsThis qualitative study, performed from August 1, 2018, to August 1, 2019, in tertiary referral centers, comprised a systematic literature review, focus groups, and semistructured interviews. The systematic review evaluated studies published from 1982 to August 1, 2018. Focus groups included 8 clinical experts experienced in the measurement, diagnosis, treatment, and rehabilitation of hearing loss. Semistructured interviews included 26 adults with hearing loss recruited from an institutional data set and outpatient hearing aid and otology clinics using stratified convenience sampling to include individuals of diverse ages, urban and rural residency, causes of hearing loss, severity of hearing loss, and treatment experience.Main outcomes and measuresA set of items and subdomains that collectively describe the association of hearing loss with health-related quality of life.ResultsThe literature search yielded 2779 articles from the MEDLINE, Embase, Cochrane, PsycINFO, and CINAHL databases. Forty-five studies including 1036 individuals (age range, 18-84 years) were included. The focus group included 4 audiologists and 4 otologists. Hour-long semistructured interviews were conducted with 26 individuals (13 women; median age, 54 years; range, 25-83 years) with a broad range of hearing loss causes, configurations, and severities. From all 3 sources, a total of 125 items were generated and organized into 29 subdomains derived from the World Health Organization's International Classification of Functioning, Disability and Health.Conclusions and relevanceThe association of hearing loss with quality of life is multidimensional and includes subdomains that are not considered in the estimation of health utility by existing utility measures. The presented comprehensive profile of items can be used to generate or evaluate measures of hearing-related quality of life, including utility measures.
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Project description:PURPOSE:To quantify HRQOL of TGN patients using the PedsQL 4.0 generic core scales, and to compare reported HRQOL of TGN adolescents with published data from comparison populations. METHODS:Transgender children and adolescents (N = 142; 68% natal females) ages 6-23 years (M = 15.9, SD = 3.7) attending an outpatient clinic for TGN care at an academic pediatric hospital and caregivers of children and adolescents (N = 95) completed the PedsQL 4.0 generic core scales. Scores were compared with published scores for healthy adolescents and adolescents with 10 chronic diseases. RESULTS:TGN youth reported significantly lower overall HRQOL (more than twice the clinically meaningful difference) compared to youth without chronic disease. Total self-reported TGN HRQOL (M(SD), 65.72(17.40)) was lower than all chronic disease comparison groups except for rheumatology and cerebral palsy. TGN youth reported physical functioning (M(SD), 75.33(22.87)) lower than or similar to chronically ill comparisons, but higher than rheumatology and cerebral palsy groups. Psychosocial functioning (M(SD), 59.87(17.83)) was lower than all comparison samples and similar to youth with cerebral palsy. Results were similar for parent proxy-reports of TGN youth HRQOL (LS means: 68.75; 95% CI 65.87-71.61 vs 66.16; 95% CI 62.87-69.45; p = 0.12). CONCLUSIONS:TGN youth reported low HRQOL across all domains; most were significantly lower than healthy peers or peers with chronic diseases. Clinicians should understand the magnitude of TGN youth's low HRQOL and offer them and their caregivers resources to maximize their ability to achieve their full potential for healthy and productive lives.
| S-EPMC6453662 | biostudies-literature
Project description:Previous research has shown that the built environment plays a crucial role for health-related quality of life (HRQoL) and health care utilization. But, there is limited evidence on the independence of this association from lifestyle and social environment. The objective of this cross-sectional study was to investigate these associations, independent of the social environment, physical activity and body mass index (BMI). We used data from the third follow-up of the Swiss study on Air Pollution and Lung and Heart diseases In Adults (SAPALDIA), a population based cohort with associated biobank. Covariate adjusted multiple quantile and polytomous logistic regressions were performed to test associations of variables describing the perceived built environment with HRQoL and health care utilization. Higher HRQoL and less health care utilization were associated with less reported transportation noise annoyance. Higher HRQoL was also associated with greater satisfaction with the living environment and more perceived access to greenspaces. These results were independent of the social environment (living alone and social engagement) and lifestyle (physical activity level and BMI). This study provides further evidence that the built environment should be designed to integrate living and green spaces but separate living and traffic spaces in order to improve health and wellbeing and potentially save health care costs.
| S-EPMC8101743 | biostudies-literature
Project description:ObjectiveEpilepsy is a common and serious neurological disorder. This cross-sectional analysis addresses the burden of epilepsy at different stages of the disease.MethodsThis pilot study is embedded within the Australian Epilepsy Project (AEP), aiming to provide epilepsy support through a national network of dedicated sites. For this analysis, adults aged 18-65 years with first unprovoked seizure (FUS), newly diagnosed epilepsy (NDE), or drug-resistant epilepsy (DRE) were recruited between February-August 2022. Baseline clinicodemographic data were collected from the participants who completed questionnaires to assess their quality of life (QOLIE-31, EQ-5D-5L), work productivity (Work Productivity and Activity Impairment [WPAI]), and care needs. Univariate analysis and multivariate regression was performed.Results172 participants formed the study cohort (median age 34, interquartile range [IQR]: 26-45), comprising FUS (n = 44), NDE (n = 53), and DRE (n = 75). Mean QOLIE-31 score was 56 (standard deviation [SD] ± 18) and median EQ-5D-5L score was 0.77 (IQR: 0.56-0.92). QOLIE-31 but not EQ-5D-5L scores were significantly lower in the DRE group compared to FUS and NDE groups (p < 0.001). Overall, 64.5% of participants participated in paid work, with fewer DRE (52.0%) compared with FUS (76.7%) and NDE (72.5%) (p < 0.001). Compared to those not in paid employment, those in paid employment had significantly higher quality of life scores (p < 0.001). Almost 5.8% of participants required formal care (median 20 h/week, IQR: 12-55) and 17.7% required informal care (median 16 h/week, IQR: 7-101).SignificanceEpilepsy is associated with a large burden in terms of quality of life, productivity and care needs.Plain language summaryThis is a pilot study from the Australian Epilepsy Project (AEP). It reports health economic data for adults of working age who live with epilepsy. It found that people with focal drug-resistant epilepsy had lower quality of life scores and were less likely to participate in paid employment compared to people with new diagnosis epilepsy. This study provides important local data regarding the burden of epilepsy and will help researchers in the future to measure the impact of the AEP on important personal and societal health economic outcomes.
| S-EPMC10984321 | biostudies-literature
Project description:Few studies have evaluated the association between a healthful plant-based diet and health-related quality of life (HRQoL). We followed 50 290 women in the Nurses' Health Study (NHS; 1992-2000) and 51 784 women in NHSII (1993-2001) for 8 years to investigate changes in plant-based diet quality in relation to changes in physical and mental HRQoL. Plant-based diet quality was assessed by three plant-based diet indices: overall plant-based diet index (PDI), healthful PDI (hPDI) and unhealthful PDI (uPDI). Physical and mental HRQoL were measured by physical component score (PCS) and mental component score (MCS) of the 36-Item Short Form Health Survey. Diet was assessed 2 years before the HRQoL measurements and both were updated every 4 years. The associations between 4-year changes in PDIs and HRQoL were evaluated. Each 10-point increase in PDI was associated with an improvement of 0·07 (95 % CI 0·01, 0·13) in PCS and 0·11 (95 % CI 0·05, 0·16) in MCS. A 10-point increase in hPDI was associated with an increment of 0·13 (95 % CI 0·08, 0·19) in PCS and 0·09 (95 % CI 0·03, 0·15) in MCS. Conversely, a 10-point increase in uPDI was associated with decreases in PCS and MCS (-0·07 (95 % CI -0·12, -0·02) and -0·10 (95 % CI -0·16, -0·05), respectively). Compared with a stable diet, an increase in hPDI was significantly associated with improvements in physical HRQoL in older women and with mental HRQoL in younger women. In conclusion, adherence to a healthful plant-based diet was modestly associated with improvements in both physical and mental dimensions of HRQoL.
| S-EPMC7554085 | biostudies-literature