Family support in adults with epilepsy Tedrus, Gloria M. A. S.; Leandro-Merhi, Vania Aparecida; Etchegaray, Augusto ...
Arquivos de neuro-psiquiatria,
11/2023, Volume:
81, Issue:
11
Journal Article
Peer reviewed
Open access
Abstract
Background The perception of family support in chronic disease can be relevant.
Objective To assess the perception of family support in adult patients with epilepsy (PWEs) and relate it to ...quality of life (QoL) and clinical aspects.
Methods Data from the Perceived Family Support Inventory (IPFS) of 130 PWEs were related to the clinical variables, QOLIE-31 scores, and the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) with statistical tests, with p < 0.05.
Results The mean age was 49.9 ± 17.2 years, and the duration of epilepsy was 20.8 ± 15.4 years. The presence of depression (scores ≥ 15) was associated with lower family support. Being married and non-occurrence of depression were the variables associated with a higher IPFS score (R = 0.2112), in the multiple linear regression.
Conclusion The perception of greater family support was associated with demographic aspects, the absence of depression, and better QoL. Family relationships may play an essential role in health adjustment behaviors and QoL in epilepsy.
•Women with epilepsy face challenges that restrict their autonomy in social inclusion.•Having a partner and children was observed on a large portion of the patients.•The possession of a driver's ...license was minimal, and the diagnosis of epilepsy negatively influenced it.•Approximately half of the cases do not go out alone, and the majority do not live alone.•Having a partner and driving vehicles are associated with a better quality of life.
Epilepsy is a chronic disease characterized by recurrent epileptic seizures that can affect the perception of stigma and compromise the quality of life of those living with it. In addition, sociodemographic factors such as employment and maintaining a job, education, and the autonomy to drive vehicles are often impaired.
To assess the social inclusion of adult women with epilepsy in relation to the perception of stigma and quality of life, and the clinical aspects of the disease.
Data from 70 adult Brazilian women with epilepsy regarding aspects related to their social inclusion were verified. Such data were linked to clinical aspects and scores from the questionnaires: Quality of Life in Epilepsy Inventory 31 (QOLIE-31) and the Epilepsy Stigma Scale (ESS), with a significance level of p < 0.05.
Average age of 45.5 years, 40 (57.1 %) women were divorced/single/widowed, 31 (44.3 %) women had less than 10 years of formal education, 32 (45.7 %) women had no income, and 57 (81.4 %) did not have a driver's license. The age at the time of the first seizure was 18 years, the seizures were focal in 46 (65.7 %) cases, and 26 (37.1 %) cases were seizure-free in the last year. A high number of women reported that the diagnosis of epilepsy negatively influenced aspects of autonomy such as the possession of a driver's license and going out alone. Longer duration of epilepsy was associated with lower education, not having children, and lower scores on the QOLIE-31. Higher scores on the QOLIE-31 were correlated with lower frequency of seizures and with the age at the time of the first seizure. Values in the dimension − energy and fatigue of the QOLIE-31 were significantly lower in the group with less independence compared to the other two groups with more independence, in latent class analyses (ANOVA, adjusted for age 42.1 ± 35.6 vs 57.2 ± 28.4 vs 73.9 ± 23.8, p = 0.0295).
Clinical aspects of epilepsy and having a partner, autonomy, and independence such as driving vehicles are factors that contribute to social inclusion and to the perception of a better quality of life for adult women with epilepsy.
It was observed that having a partner, autonomy, and independence such as driving vehicles are factors that contribute to social inclusion and to the perception of a better quality of life for adult women with epilepsy.
Loneliness, “a subjective feeling of being isolated”, is a strong predictor of adverse health. We characterized loneliness in patients with end-stage liver disease (ESLD) awaiting liver ...transplantation (LT).
We surveyed loneliness in ambulatory ESLD adults awaiting LT at 7 U.S. sites using the validated UCLA Three-Item Loneliness Scale, May2020-Jan2021; “lonely”=total ≥5. Liver Frailty Index (LFI) assessed frailty; “frail”=LFI≥4.4. Logistic regression associated loneliness and co-variables.
Of 454 participants, median MELDNa was 14 (IQR 10-19) and 26% met criteria for “lonely”. Compared to those not lonely, those lonely were younger (57 v. 61y), more likely to be female (48% v. 31%) or frail (21 v. 11%), and less likely to be working (15% v. 26%) or in a committed partnership (52% v. 71%). After multivariable adjustment, frailty (OR=2.24, 95%CI=1.23-4.08), younger age (OR=1.19, 95%CI=1.07-1.34), female sex (OR=1.83, 95%CI=1.14-2.92), not working (OR=2.16, 95%CI=1.16-4.03), and not in a committed partnership (OR=2.07, 95%CI=1.29-3.32) remained significantly associated with higher odds of loneliness.
Loneliness is prevalent in adults awaiting LT, and independently associated with younger age, female sex and physical frailty. These data lay the foundation to investigate the extent to which loneliness impacts health outcomes in LT, as in the general population.
Clinical Trial Registry Website: https://clinicaltrials.gov Trial Number: NCT03228290
INTRODUCTIONLoneliness, "a subjective feeling of being isolated", is a strong predictor of adverse health. We characterized loneliness in patients with end-stage liver disease (ESLD) awaiting liver ...transplantation (LT).METHODSWe surveyed loneliness in ambulatory ESLD adults awaiting LT at 7 U.S. sites using the validated UCLA Three-Item Loneliness Scale, May2020-Jan2021; "lonely"=total ≥5. Liver Frailty Index (LFI) assessed frailty; "frail"=LFI≥4.4. Logistic regression associated loneliness and co-variables.RESULTSOf 454 participants, median MELDNa was 14 (IQR 10-19) and 26% met criteria for "lonely". Compared to those not lonely, those lonely were younger (57 v. 61y), more likely to be female (48% v. 31%) or frail (21 v. 11%), and less likely to be working (15% v. 26%) or in a committed partnership (52% v. 71%). After multivariable adjustment, frailty (OR=2.24, 95%CI=1.23-4.08), younger age (OR=1.19, 95%CI=1.07-1.34), female sex (OR=1.83, 95%CI=1.14-2.92), not working (OR=2.16, 95%CI=1.16-4.03), and not in a committed partnership (OR=2.07, 95%CI=1.29-3.32) remained significantly associated with higher odds of loneliness.CONCLUSIONLoneliness is prevalent in adults awaiting LT, and independently associated with younger age, female sex and physical frailty. These data lay the foundation to investigate the extent to which loneliness impacts health outcomes in LT, as in the general population. Clinical Trial Registry Website: https://clinicaltrials.gov Trial Number: NCT03228290.
