Health utilities and quality of life in individuals with tuberous sclerosis complex (TSC) who experience epileptic seizures: A web-based survey.
Epilepsy Behav
; 92: 213-220, 2019 03.
Article
em En
| MEDLINE
| ID: mdl-30690322
ABSTRACT
OBJECTIVES:
Individuals with tuberous sclerosis complex (TSC) experience a wide range of health impacts, including epileptic seizures, negatively impacting their health-related quality of life (HRQoL). Health state utility values (HSUVs) are index values representing HRQoL and are used as key inputs for health economic analyses. Such data are currently very limited in the TSC population. The objective of this study was to generate HSUVs for TSC health states, defined by the number and type of seizures experienced in the previous week, and to compare with UK normative values.METHODS:
This cross-sectional study involved 186 participants (individuals with TSCâ¯=â¯61, caregivers reporting for individuals with TSCâ¯=â¯125) from Europe and North America who completed a web-based survey. Participants completed the [EuroQol - 5 dimensions - 3 levels] (self-report version for individuals with TSC or proxy version 1 for caregivers).RESULTS:
The mean age of individuals with TSC was 27.3â¯years (self-reported 41.3â¯years, caregiver-reported 20.5â¯years); 56% were males. Most individuals with TSC (71%) reported experiencing between one and ten seizures in the week prior to participating in the study. The most frequently reported type of seizure was focal simple partial (50%). Across all participants (combined self-report and caregiver-report), the mean HSUV was 0.474 (95% confidence interval [CI] 0.424-0.524), significantly lower than the UK norm (0.856, 95%CI 0.848-0.864) [1]. Mean HSUV and HRQoL scores were consistently lower when reported by caregivers than when self-reported by individuals with TSC (HSUVâ¯=â¯0.351 vs. 0.727). This is in part because caregivers reported for individuals with TSC who experienced more frequent and severe seizures than those who were able to self-report. HSUVs incrementally decreased with the experience of more frequent (1-5 per week HSUVâ¯=â¯0.666 vs. >20 HSUVâ¯=â¯0.290) and more severe seizures (focal simple partial HSUVâ¯=â¯0.450 vs. generalized convulsive HSUVâ¯=â¯0.194).CONCLUSIONS:
The HRQoL and HSUV index scores indicate substantial impairment among individuals with TSC; HSUVs were shown to decrease considerably with increases in seizure frequency or seizure severity, indicating that more burdensome seizure health states are associated with poorer HRQoL.Palavras-chave
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Qualidade de Vida
/
Convulsões
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Esclerose Tuberosa
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Aceitação pelo Paciente de Cuidados de Saúde
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Inquéritos e Questionários
/
Internet
Tipo de estudo:
Observational_studies
/
Prevalence_studies
/
Qualitative_research
/
Risk_factors_studies
Limite:
Adolescent
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Adult
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Child
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Child, preschool
/
Female
/
Humans
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Male
/
Middle aged
País como assunto:
America do norte
/
Europa
Idioma:
En
Ano de publicação:
2019
Tipo de documento:
Article