Background: Quality of life (QoL) is an important aspect of disease management in patients with dementia. Yet, little is known about this from a patient’s perspective. The aim of this study is to...Show moreBackground: Quality of life (QoL) is an important aspect of disease management in patients with dementia. Yet, little is known about this from a patient’s perspective. The aim of this study is to gain insight in the QoL and instrumental activities of daily living (IADL) in patients with (early onset) dementia and to examine the possible relationships with openness to discuss concerns (ODC), perceived social support (PSS) and problem-focused coping. The main hypothesis tested if more ODC, PSS and a problem-focused coping strategy were related to higher QoL and IADL. Methods: We studied patients visiting the Amsterdam Alzheimer center for a screening-day, who consented to research in the ADC cohort. Of 206 patients visiting the clinic, 162 patients (35-82 years, M = 63.59, 63,6% male) completed an 88-item self-reported questionnaire. Patients were categorized by their cognitive diagnosis (SCD = 42 , AD = 48, other dementia = 33, psychiatric disorder = 20 or other neurological disorder = 19). Correlations and multiple linear regressions were performed to assess the relationships between QoL, IADL, and the social factors. In addition, we performed a linear regression to track down group differences. Tests with a p < .05 after correction for multiple testing using a False Discovery Rate (FDR), were considered significant. Results: The distribution of the QoL scores was widespread (range 0-96) with a low median (50). Correlations showed that both PSS (r = .41, p = 5.5×10-6), ODC (r = .17, p = .02) and problem-focused coping (r = .19, p =.02) correlated with higher QoL scores. For IADL (median = 15.3) this was, only true for the ODC (r = .22, p = .01). There were no differences found between patient groups. Conclusion: This study indicates that PSS, ODC and problem focused coping are related to higher QoL in patients with (early onset) dementia. There were no group differences, but the average QoL score was lower than expected. Improving patients’ psychosocial factors has the potential to optimize QoL in patients visiting a tertiary memory clinic.Show less
Mutations in the SCN1A-gene cause a spectrum of epileptic syndromes, ranging from syndromes with mild febrile seizures and/or epileptic seizures (Genetic Epilepsy with Febrile Seizures plus (GEFS+)...Show moreMutations in the SCN1A-gene cause a spectrum of epileptic syndromes, ranging from syndromes with mild febrile seizures and/or epileptic seizures (Genetic Epilepsy with Febrile Seizures plus (GEFS+) and Febrile Seizures plus (FS(+)) to Dravet Syndrome (DS). DS is a rare disorder – caused by SCN1A mutations in 75% of cases – characterized by diverse types of severe epileptic seizures and several comorbidities such as cognitive impairment and behavioral problems. Behavioral problems largely impact the lives of DS patients and their caregivers and are also present – to a less severe extent – in non-DS patients (patients with GEFS+ or FS(+)). However, behavioral problems are often overlooked in the treatment of patients with SCN1A-related disorders. This study aimed to describe internalizing (e.g. depressed behavior) and externalizing (e.g. aggression) behavioral problems to investigate relations to possible risk factors in SCN1A-related seizure disorders both cross-sectionally and longitudinally. The population comprised of 161 Dutch patients, of which 113 DS patients and 48 non-DS patients. Behavioral data were obtained through digital surveys, behavioral questionnaires and phone interviews with (caregivers) of patients. Of 62 patients, complete longitudinal behavioral data from two measuring points – 2015 and 2021 – were collected. It was mainly hypothesized that behavioral problems related to high major seizure frequency and use of multiple anti-seizure medications and that increased behavioral problems over time were associated with multiple medication use, high seizure frequency and impaired cognition. Secondarily, factors such as cognitive impairment, sex differences and internalizing and externalizing problems were investigated. Expectedly, seizure frequency was positively related to behavioral problems in the whole population (rs = .249, p = .007). Unexpectedly, use of multiple anti-seizure medications was negatively associated with the presence of behavioral problems (X2 = 4.349, p = .037). In DS patients, being female and having severe cognitive impairment contributed to increased behavioral problems over time (R2 = .220). For non-DS patients, being of young age (R2 = .312) and female (R2 = .200) separately contributed to increased behavioral problems. This study facilitates improved education and active behavioral management of behavior problems for (family of) patients with SCN1A-related seizure disorders by identifying the prevalence and nature of behavioral difficulties and its associated factors.Show less
Background. Antipsychotic medication is the first line treatment for First Episode Psychosis. However, it is still under discussion whether medication continuation or dose reduction/discontinuation...Show moreBackground. Antipsychotic medication is the first line treatment for First Episode Psychosis. However, it is still under discussion whether medication continuation or dose reduction/discontinuation is more beneficial for cognitive functioning after a patient has reached symptomatic remission. Some studies state that the use of antipsychotics is beneficial for cognitive functioning, while others established negative effects of antipsychotics, especially at high doses, and therefore state that discontinuation is more beneficial. In this study, the effects of antipsychotic medication continuation versus dose reduction/discontinuation on cognitive functioning were investigated. Methods. In this multicenter pragmatic single-blind randomized controlled trial, global cognitive functioning and executive functioning were measured at baseline (3-6 months after symptomatic remission) and at 6-month follow-up in patients who suffered from a First Episode Psychosis. Participants (N = 129) were randomized into a dose continuation condition (N = 55) and a dose reduction/discontinuation condition (N = 74). Results. The effect of condition appeared to be significant for global cognitive functioning (X2(1) = 4.01, p = .05), meaning that, overall, patients who reduced/discontinued their medication scored significantly better than patients who continued their medication. This was not the case for executive functioning. Contrary to the hypothesis, evaluation of linear mixed modelling revealed no significant interaction between condition and time on global functioning, nor on executive functioning (p > .05), meaning that the differences between the conditions remained stable over time. Conclusions. Despite that the hypothesis could not be confirmed, the fact that there is a group difference and that negative effects might only show at high doses of antipsychotic medication, can be carefully considered as support for the use of low doses of antipsychotic medication.Show less
Background. Pediatric brain tumor patients are known to experience cognitive problems. It is important to recognize that pediatric cancer patients and their families face significant distress from...Show moreBackground. Pediatric brain tumor patients are known to experience cognitive problems. It is important to recognize that pediatric cancer patients and their families face significant distress from the moment of diagnosis. The early screening and treatment of stress symptoms may help to reduce cognitive problems and improve the quality of life for pediatric brain tumor survivors. The main aim for this thesis was to evaluate whether there is an association between medical (traumatic) stress and cognition, within the first year of diagnosis in pediatric brain tumor patients. It was hypothesized that on average, cognitive performance and stress would improve and that patients with persistent stress or increased medical (traumatic) stress would experience more cognitive difficulties. Method. The longitudinal study included 74 pediatric brain tumor patients. Stress was measured with a questionnaire and cognition was measured with neuropsychological assessments on the cognitive domains of attention, executive functioning, processing speed, and memory. Patients participated at two time points, shortly after diagnosis and one year after diagnosis. One-sample t-tests were used to compare the z-scores of the cognitive domains at both time points. Paired t-tests were used to examine stress and cognition over one year. To examine an association a linear mixed model was performed, predictors included stress and time since diagnosis. Results. On average, medical (traumatic) stress improved over one year, with a subgroup of patients experiencing increased and/or persistent stress throughout the year. The cognitive domain of attention was mostly impaired with no improvement over one year. Executive functioning and processing were mostly impaired at the beginning of diagnosis, with improvements over one year. Memory was not impaired. Moreover, there was no association found between medical (traumatic) stress and cognition. Conclusion. This study showed that it is important to test for cognitive performance and medical (traumatic) stress shortly after diagnosis and over the course of one year. New insights from early testing could benefit clinical implications and interventions to improve the quality of life. For future research, objective measures of medical (traumatic) stress and a healthy matched control group should be added.Show less
Introduction: Offspring of parents with a mood disorder have a strong risk of developing a mood disorder and displaying cognitive deficits compared to healthy controls. Research shows...Show moreIntroduction: Offspring of parents with a mood disorder have a strong risk of developing a mood disorder and displaying cognitive deficits compared to healthy controls. Research shows positiveassociations between sleep and cognitive performance and exercise and cognitive performance in the general population. The present cross-sectional study aimed to identify a relationship between sleep, exercise and cognitive performance in adolescents at high-risk for severe mental illness. It was expected that regular exercise or adequate sleep duration has a significant and positive association with cognitiveperformance in adolescents at high-risk for severe mental illness. Methods: Data were collected by the Mood and Resilience in Offspring (MARIO) study, a longitudinal study investigating the transmission of mood disorders between parents and offspring. In total, 146 participants from both a high-risk and control group were included and filled in questionnaires about sleep, exercise and depressive symptoms. They also completed two subtests (matrix reasoning and vocabulary) of the WISC-V or WAIS-IV. Multiple regression analyses were conducted to test whether there was a positive relationship between exercise, sleep and cognitive performance in adolescents at high-risk for severe mental illness and controls. Results: The analyses showed no significant association between exercise and matrix reasoning (β = -.02, p = .873) and vocabulary (β = .21, p = .146). Moreover, there was no significant association between sleep duration and matrix reasoning (β = -.06, p = .506) or vocabulary (β = -.07, p = .465). Furthermore, depressive symptoms did not moderate the relationship between sleep, exercise and cognitive performance. Sensitivity analyses, including only high-risk participants, did not reveal any additional insights. Conclusions: Contrary to the hypotheses, our findings show no positive association between adequate sleep duration and/or regular exercise and cognitive performance in adolescents at high-risk for severe mental illness. Offspring of parents with a mood disorder form a vulnerable group. Future research is therefore needed to better understand mood symptoms and cognitive deficits in offspring of parents with mood disorders. Keywords: sleep duration, exercise, cognitive performance, high-risk, mood disorderShow less
