Spiritual/religious coping in patients with epilepsy: Relationship with sociodemographic and clinical aspects and quality of life

Gliomas make up about 8 cases per 100,000 population and the number of patients with this disease is only increasing. There can be not only various types of neurological deficits among the symptoms, but also personal and emotional changes, that seriously affects the quality of life. The modern model of health care includes not only recovery of the patient’s physical functions, but also his or her psychosocial well-being. In particular, the assessment and study of the characteristics of health-related quality of life, as well as cognitive functions in patients with gliomas, is increasingly recognized as an important criterion when considering the effectiveness of treatment. To date, the features of health related quality of life and cognitive functions of patients with epilepsy and acute cerebral circulation disorders have been studied sufficiently, and, as a result, techniques have been developed that accurately assess the QOL and CF in patients with these diseases. These are QOLIE-31 and QOLIE-AD-48 questionnaires for patients with epilepsy. This is the National Institutes of Health Stroke Scale (NIHSS), Orgogozo stroke scale (OSS), World Federation of Neurological Surgeons (WFNS) scale for the clinical assessment of subarachnoid hemorrhage (SAH) for patients with acute cerebrovascular accident. At the same time, there are no generally accepted methods for assessing quality of life and neurocognitive functions that are sensitive to changes in the condition of patients with gliomas in the early postoperative period by the time of discharge from the hospital. As a result, there is no systematic information on the dynamics of the quality of life of such patients, their neurocognitive functioning. The purpose of this article was to study the literature on QOL and CF in patients affected by neurological and neurosurgical disorders for the further selection of optimal methods for assessing dynamics of the condition of patients with glial brain tumors before and after surgery. At the moment, such requirements are only partially met by the EORTC QLQ-C30 questionnaire and its application EORTC QLQ-BN20.

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Psychiatric and psychosocial morbidity 1 year after epilepsy surgery

Irish Journal of Psychological Medicine ◽

10.1017/ipm.2020.114 ◽

2020 ◽

pp. 1-8

Author(s):

S. Patel ◽

M. Clancy ◽

H. Barry ◽

N. Quigley ◽

M. Clarke ◽

...

Keyword(s):

Quality Of Life ◽

Surgical Treatment ◽

Epilepsy Surgery ◽

Refractory Epilepsy ◽

Post Surgery ◽

Axis I ◽

Patients With Epilepsy ◽

The Impact

Abstract Objectives: There is a high rate of psychiatric comorbidity in patients with epilepsy. However, the impact of surgical treatment of refractory epilepsy on psychopathology remains under investigation. We aimed to examine the impact of epilepsy surgery on psychopathology and quality of life at 1-year post-surgery in a population of patients with epilepsy refractory to medication. Methods: This study initially assessed 48 patients with refractory epilepsy using the Structured Clinical Interview for DSM-IV Axis I Disorders (SCID-I), the Hospital Anxiety and Depression Scale (HADS) and the Quality of Life in Epilepsy Inventory 89 (QOLIE-89) on admission to an Epilepsy Monitoring Unit (EMU) as part of their pre-surgical assessment. These patients were again assessed using the SCID-I, QOLIE-89 and HADS at 1-year follow-up post-surgery. Results: There was a significant reduction in psychopathology, particularly psychosis, following surgery at 1-year follow-up (p < 0.021). There were no new cases of de novo psychosis and surgery was also associated with a significant improvement in the quality of life scores (p < 0.001). Conclusions: This study demonstrates the impact of epilepsy surgery on psychopathology and quality of life in a patient population with refractory surgery. The presence of a psychiatric illness should not be a barrier to access surgical treatment.

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The quality of life in the relatives of Wolfram’s syndrome patients

European Journal of Investigation in Health, Psychology and Education ◽

10.3390/ejihpe5010009 ◽

2014 ◽

Vol 5 (1) ◽

pp. 89-97

Author(s):

Gema Esteban ◽

Mónica Ruano ◽

Isabel Motero

Keyword(s):

Quality Of Life ◽

Diabetes Mellitus ◽

Genetic Basis ◽

Clinical Symptoms ◽

Daily Life ◽

Wolfram Syndrome ◽

Clinical Aspects ◽

The Family ◽

Low Prevalence

Wolfram Syndrome (WS) is a rare disease (RD) with an estimated prevalence of 1/770,000 inhabitants. It is considered a multisystemic, chronic and progressive disease.WS diagnosis implies devastating consequences at physical, educational and emotional levels. WS is also known by the acronym DIDMOAD, derived from the first letters of the main clinical symptoms: Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy, and Deafness. Rare diseases are characterized by their low prevalence and the lack of knowledge on the pathophysiology and treatment of them. Interestingly, around 80% of RD have a genetic basis, and this fact causes doubts and uncertainties in the couples, about the idea of having another child. The existence of a RD in a family, alters significantly the relationships and the quality of life within the family. The present work remarks the huge value of psychosocial aspects in order to pay an adequate attention to these patients, not only taking care of the clinical aspects. The main purpose of this study has been to ascertain the quality of life of Wolfram’s syndrome affected patients, and its impact in the daily life.

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Health-Related Quality of Life in Adrenocortical Carcinoma

Cancers ◽

10.3390/cancers11101500 ◽

2019 ◽

Vol 11 (10) ◽

pp. 1500 ◽

Cited By ~ 1

Author(s):

Rebecca V. Steenaard ◽

Laura A. Michon ◽

Harm R. Haak

Keyword(s):

Quality Of Life ◽

General Population ◽

Adrenocortical Carcinoma ◽

Treatment Options ◽

Clinical Aspects ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

The Impact

Insight into the health-related quality of life (HRQoL) impact of adrenocortical carcinoma (ACC) is important. The disease and its treatment options potentially have an impact on HRQoL. For patients with limited survival, HRQoL research is of utmost importance. We will therefore provide an overview of HRQoL studies in patients with ACC. We found six studies that measured HRQoL in 323 patients with ACC (3 cross-sectional, 1 cohort, 2 trials), all indicating a reduced HRQoL compared to the general population. The FIRMACT trial found that HRQoL of patients with ACC was reduced compared to the general population, and that chemotherapy-mitotane further reduced HRQoL even though survival improved. Clinical aspects of the disease, including cortisol and aldosterone production and adrenal insufficiency have shown great impact on HRQoL in benign disease, even after the recovery of hormonal status. However, the impact of malignant adrenal disease and treatment options on HRQoL including adrenalectomy, radiotherapy, mitotane therapy, and chemotherapy have not been sufficiently studied in patients with ACC. Although the number of HRQoL studies in patients with ACC is limited, the existing literature does indicate that ACC has a large impact on patients’ HRQoL, with disease specific aspects. Further HRQoL research in patients with ACC is essential to improve patient-centered care, preferably by using an ACC-specific HRQoL questionnaire.

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