Social-emotional aspects of quality of life in multiple sclerosis.

Multiple sclerosis (MS) is an inflammatory auto-immune disease of the central nervous system. It leads to many impairments including physical, cognitive, psychological, and social challenges. Our study examined gender and cultural associations with quality of life (QoL), personal characteristics, and benefits from having MS among those with MS. The study was conducted in Austria and the United States. The sample included 128 participants, 64 in each country, of whom 78 were women and 50 were men aged between 20 and 57 years. We used standard statistical tests, including analyses of covariance (ANCOVA) and partial correlations for the analysis of quantitative data. For the qualitative part of the survey we used semi-structured interviews, which we transcribed and coded to identify categories in the answers for qualitative analyses. Austrian participants with MS perceived a higher social-emotional QoL in comparison to American participants. American participants expressed a higher self-esteem in comparison to Austrian participants. Men reported a lower ability to express love than women. Independent of sex/gender and nationality, participants reported benefits through the disease, especially with regard to improved compassion, mindfulness, improved family relations and lifestyle gains. The qualitative interviews revealed additional gender differences for coping with the illness; and in experiences, expectations, and challenges related to MS. These insights can be used to develop targeted psychological and social support interventions aimed toward improving social-emotional QoL for persons with MS.

Qualitative study identifies life shifts and stress coping strategies in people with multiple sclerosis.

Multiple sclerosis (MS) is an auto-immune disease in which the body's immune system attacks the central nervous system. The demyelination of the nerve fibers can lead to physical, emotional, and cognitive impairments. We wanted to learn about challenges of living with the illness and how people deal with stress. 128 individuals with MS from Austria and the US participated in the qualitative interviews. We interviewed participants and coded their answers using inductive grounded theory. We asked three open-ended questions to inquire about life since being diagnosed with MS as well as about dealing with stress. Life shifts since diagnosis involved 'experiencing limitations' and could be categorized in 'emotional changes', 'changes with work', 'changes in social interaction', 'physical changes', 'changes in the medical context'. For dealing with stress active (strategies and activities) and passive coping strategies (avoid/ignore) were employed. General stress reactions were expressed in areas of emotional, physical and /or lifestyle. We recommend developing interventions in three core areas for the MS population: (1) dealing with life changes and significant experiences with MS, (2) focusing on the areas where life shifts took place, (3) focusing on active coping with stress and discussing consequences of passive coping strategies.

Long-term quality of life in treatment-resistant depression after electroconvulsive therapy.

BACKGROUND: Electroconvulsive therapy (ECT) is highly effective for treatment-resistant depression (TRD), and previous studies have demonstrated short-term improvements in quality of life (QoL) after ECT.  However, long-term QoL after ECT has not been studied, and the baseline patient characteristics that predict long-term QoL remain unknown. METHODS: Seventy-nine subjects with unipolar or bipolar TRD were enrolled in this prospective longitudinal observational study. Physical, psychological, social, and environmental QoL domains were measured with the abbreviated World Health Organization Quality of Life scale (WHOQOL-BREF) at baseline and every 6 months for up to 2 years after ECT.  Baseline sociodemographic and clinical features were tested for association with long-term QoL. RESULTS: Long-term follow-up data were available from 49 participants.  Relative to baseline, average psychological and physical QoL improved during the follow-up period (Hedges' effect size: 0.27-0.83).  About 40-50% of individuals experienced clinically meaningful improvement.  Subjects with better initial antidepressant response with ECT reported better QoL over the subsequent two years.  Long-term QoL improved most among individuals who were married, those without disability status, and those with psychotic features or shorter depressive episodes at baseline. LIMITATIONS: Participants were from a single US academic center and mainly of European ancestry, so findings may not generalize to other settings or ethnicities.  The observational design does not allow causal inferences. CONCLUSIONS: Long-term psychological and physical QoL outcomes vary widely after ECT. Individuals with the best outcomes are those who respond well to ECT initially, married people, and those with a less chronic course of illness.

Quality of life across domains among individuals with treatment-resistant depression.

BACKGROUND: Treatment-resistant depression affects millions of people worldwide and is a leading cause of disability and suicide. Studies of treatment-resistant depression outcomes have traditionally focused on depressive symptoms and functional impairment. Quality of life (QoL) has not been well described. We aimed to measure QoL in individuals with treatment-resistant depression and to determine how QoL was related to traditional measures of symptoms and social functioning. METHODS: We used a reliable, cross-culturally validated questionnaire, the abbreviated World Health Organization Quality of Life scale (WHOQOL-BREF), to prospectively measure QoL in 79 patients with treatment-resistant depression who were referred for electroconvulsive therapy at a United States tertiary-care medical center. QoL was characterized in four domains: physical, psychological, social, and environmental. QoL domains were examined for association with demographic variables, patient-reported depressive symptoms, functional impairment, and childhood adversity, as well as clinician-rated scales. RESULTS: Relative to published international norms, mean QoL scores were low in physical (standardized score, z = -2.0), psychological (z = -2.6), and social (z = -1.0) domains, but not in the environmental domain (z = 0.2). After controlling for age and income, patient-rated depressive symptoms correlated with physical (Pearson correlation, r = -0.26) and psychological (r = -0.43) QoL, whereas adverse childhood experiences correlated with environmental QoL (r = -0.33). Patient-rated functional impairment correlated modestly with all domains (r = -0.25 to -0.39). Surprisingly, QoL correlated very weakly with clinician-rated measures. These modest associations of QoL with other clinical scales were confirmed in multiple regression analyses. LIMITATIONS: We used a single QoL instrument, which did not allow us to directly compare the WHOQOL-BREF scale with other commonly used instruments. Our sample was recruited from a single academic medical center in the Midwest region of the United States and was largely Caucasian. These factors may limit generalizability to other settings and ethnicities. CONCLUSION: Among individuals with treatment-resistant depression, QoL is lowest in the psychological and physical domains. QoL is only modestly correlated with patient-rated symptoms and functioning, and even more weakly correlated with clinician-rated scales, indicating that measures of symptoms and functioning cannot serve as QoL proxies. QoL should be assessed when caring for patients with treatment-resistant depression. When developing novel biological, psychological, and social interventions for treatment-resistant depression, QoL should be targeted as a distinct clinical outcome.