Introduction: Dravet Syndrome (DS) is a severe epileptic encephalopathy, generally characterized by refractory seizures, cognitive impairment, and behavior problems. Health-related quality of life ...Show moreIntroduction: Dravet Syndrome (DS) is a severe epileptic encephalopathy, generally characterized by refractory seizures, cognitive impairment, and behavior problems. Health-related quality of life (HRQoL) assesses the impact of a chronic disease on an individual’s well-being. This study investigates the course of HRQoL in patients with DS between 2015 and 2021/2022, and whether the course of HRQoL can be predicted by age, the course of minor and major seizures, cognitive impairment and behavior problems. Additionally, this study aims to explore the relations between parental empowerment, parental distress, and the HRQoL in patients. Methods: This study is partly longitudinal (N=41) and cross-sectional (N=51), and uses data from three different studies. The outcome variable HRQoL was assessed with the Pediatric Quality of Life Inventory (PedsQL). Parental empowerment was measured with the Family Empowerment Scale (FES) and parental distress with the Distress Thermometer for Parents (DT-P). A multiple linear regression analysis was conducted to see which comorbidities significantly contributed to the prediction of the course of HRQoL. Moreover, a mediation analysis was performed to study the relationship between parental empowerment and parental distress, with the hypothesized mediating role of HRQoL in patients. Results: HRQoL scores improved significantly over time (t(40) = -3.40, p = .002, d = 0.53). Only predictive factors age (t(35) = 3.03, p = .005) and the course of behavior problems (t(35) = -2.46, p = .019) contributed significantly to the prediction of the course of HRQoL. Lastly, no relation was found between parental empowerment and parental distress, indicating no mediation. However, significant associations were found between parental empowerment and HRQoL in patients (r(51) = 0.31, p = .029), and parental distress and HRQoL in patients (r(51) = 0.54, p < .001). Conclusions: This study suggests an improvement of HRQoL is predicted by an increase of age and a decline of behavior problems. Therefore, it would be beneficial to involve multidisciplinary teams including psychologists to provide support for behavior problems. Lastly, this study emphasizes the crucial role of the well-being of the caregivers, and advises healthcare professionals to pay attention to the caregiver’s care needs.Show less
This study aimed to find the prevalence of impaired self-awareness (ISA) at 6 months post-TBI, and to find the predictive value of level of self-awareness at 6 months post-injury on health-related...Show moreThis study aimed to find the prevalence of impaired self-awareness (ISA) at 6 months post-TBI, and to find the predictive value of level of self-awareness at 6 months post-injury on health-related quality of life (HRQoL) at 12 months injury, corrected for neuropsychiatric, demographic and clinical variables. In this study, 344 patients at least 16 years of age with moderate-severe TBI were recruited and measures were taken at the hospital (baseline), at 6 and 12 months post-injury. The main outcome measures were self-awareness level (Awareness Questionnaire), TBI-specific HRQoL (QoLiBri), general HRQoL (EQ-5D-5L), neuropsychiatric symptoms, depression, anxiety and demographic and clinical factors. At 12 months post injury, 205 patients filled in the QoLiBri, and 193 patients filled in the EQ-5D-5L. Out of 142 patients who filled in the AQ at 6 months post-injury, only six patients could be diagnosed with ISA. This finding was unexpected and hindered the further aims of the study, as six patients are not enough for significant findings. An explanation for this small prevalence could be that ISA diminishes between injury and 6 months post-injury. The case study of these six patients showed unexpected findings; patients did not show any trends on any of the outcome or baseline measures, except for depression. Higher depression scores were present in patients with higher ISA scores; opposing the expected pattern. The small prevalence of patients with ISA at 6 months post-injury led us to focus on predictors among neuropsychiatric symptoms, demographic and clinical variables for HRQoL. We found that the presence of psychiatric history (p = .005), anxiety (p = .042), depression (p = .000) and the patient’s experienced self-awareness (p = .000) were significant predictors for TBI-specific HRQoL at 12 months post-injury. Gender (p = .010), depression (p = .000) and patient’s experienced self-awareness (p = .034) were found to be significant predictors for general HRQoL at 12 months post-injury. These predictors were expected when compared to previous studies, except for the finding that the presence of neuropsychiatric symptoms was not a predictor for HRQoL. More long-term research is needed on the development of self-awareness in relation to HRQoL.Show less
Different studies have researched the effect of optimism on health-related quality of life in various patient groups. The relationship between these two constructs in a healthy population has not...Show moreDifferent studies have researched the effect of optimism on health-related quality of life in various patient groups. The relationship between these two constructs in a healthy population has not been studied yet and thus the aim of this study was to look at the potential effects of optimism on different aspects of health-related quality of life in a healthy population. This was tested with an independent samples t-test using data from online self-administered questionnaires. These were the Life Orientation Test-Revised, which measures optimism, and the 12 Item Short Form Survey (SF-12), which measures health-related quality of life. The main finding was that higher scores on optimism were associated with significantly better ratings of health-related quality of life. This significant association was found for both components of health-related quality of life assessed in the SF-12. Those with higher optimism scores had both a significantly higher physical component score (p < .05) and a significantly higher mental component score (p < .001) than those with lower optimism scores. A possible explanation for this finding is argued to be that the relation between optimism and health-related quality of life is mediated by engagement in health-enhancing behaviors. A limitation was that the research design of the study was cross-sectional, limiting the interpretations that could be made about the directionality of the established association. A longitudinal and experimental design would be beneficial in future research to examine whether optimism has a direct effect on health-related quality of life.Show less
