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Background: Advanced stages of dementia are characterized by severe cognitive and physical impairment. It has not yet been investigated whether persons with young onset dementia (YOD) and late onset dementia (LOD) differ in advanced disease stages., Objectives: To compare quality of life (QoL) between persons with advanced YOD and LOD; to explore the determinants of QoL; to investigate whether YOD and LOD differ with regard to symptoms and care., Methods: The study was performed in the context of EPYLOGE (IssuEs in Palliative care for persons in advanced and terminal stages of YOD and LOD in Germany). Persons with advanced dementia (PWAD) were assessed and caregivers were interviewed. QoL was measured with the proxy rating Quality of Life in Late Stage Dementia (QUALID) scale., Results: 93 persons with YOD and 98 with LOD were included. No significant differences in QoL were detected. Determinants of QoL were similar in YOD and LOD. Behavioral and psychological symptoms of dementia (BPSD), suffering and other distressing symptoms were associated with a lower QoL. In YOD but not in LOD antipsychotic treatment was associated with low QoL. The group of persons who were younger than 65 years at the time of the study visit experienced significantly more distressing symptoms than older PWAD., Conclusion: Overall, persons with advanced YOD do not appear to be disadvantaged compared to old and oldest PWAD. Special attention, however, must be paid to the group of the very young persons who seem to be particularly vulnerable.

Aim: To: (1) provide greater insight into the psychological and social impact of a range of demyelinating disorders, (2) explore differences between disorders, and (3) provide direction for future research., Method: Studies were identified by searching online databases. Studies that explored the psychological, emotional, or social impact of a range of demyelinating disorders in childhood, including acute disseminated encephalomyelitis (ADEM), optic neuritis, transverse myelitis, and multiple sclerosis, were included and screened independently by three authors. Data on the design, sample characteristics, psychosocial measures, key findings, and methodological strengths and limitations were extracted. Twenty-five studies were included in the narrative synthesis., Results: Demyelinating disorders are associated with lower quality of life, affecting young people's emotional, social, school, and behavioural functioning. There is a high prevalence of psychiatric disorders and fatigue, particularly in multiple sclerosis. Subtle differences exist in the psychological presentation between different demyelinating disorders, with clear gaps in the research for the long-term psychosocial impact of monophasic conditions., Interpretation: The difference between the impact of monophasic and relapsing demyelinating disorders on psychosocial functioning is unclear. Future research should aim to identify the psychosocial impact across disorders and over time, ensure that services are capturing those patients who may benefit from tailored interventions., What This Paper Adds: Prevalence of psychiatric diagnoses in paediatric demyelinating disorders is higher than controls. Depression and emotional concerns are elevated in paediatric demyelinating disorders. Demyelinating disorders impact children's quality of life across school, social, and physical functioning., (© 2020 Mac Keith Press.)

Background: Over 80% of individuals suffering from Rett syndrome (RTT) are affected over their life period by sleeping disorders. Little is known about the impact of those on the quality of life and a clinical approach to the treatment of sleep disturbances is lacking., Aims: Primary aim was to assess sleep quality in children and adults. Secondary aim was to assess behavioral disorders and their relationship to sleep quality. The medication taken by the subjects was also included., Methods: Sleep quality and medication were assessed using the sleeping questionnaire for children with neurological and other complex diseases (SNAKE). Behavioral disorders were assessed by the Rett Syndrome Behavior Questionnaire (RSBQ). Questionnaires were sent to the 700 members of the Elternhilfe für Kinder mit Rett Syndrom in Deutschland e.V. (Rett Aid) of which 287 were included. Questionnaires were filled out by the primary caregivers., Results: Sleep quality was rated as very good to good by over 60% of caregivers in contrast to data available in the literature. Behavioral disorders related to regression such as loss of acquired hand skills ( p  = 0.046) and isolation ( p  = 0.002) were found to be associated with sleep quality. Melatonin showed a significant association ( p  = 0.007) with sleep quality., Conclusion: Our study showed sleep dysfunction to be less prevalent in RTT-affected individuals than evidence from past studies has suggested. Nevertheless, this remains a subjective assessment of sleep quality and therefore the need to find objective, disorder-specific parameters that measure sleep quality in RTT patients persists., Competing Interests: All authors reported no conflicts of interest concerning the manuscript., (Georg Thieme Verlag KG Stuttgart · New York.)

Behavioral and psychological symptoms of dementia (BPSD) are universally experienced by people with dementia throughout the course of the illness and cause a significant negative impact on quality of life for patients and caregivers. Nonpharmacologic treatments have been recommended as first-line treatment of BPSD by multiple professional organizations and should target patients with dementia factors, caregiver factors, and environmental factors. Psychotropic medications are often prescribed off-label without significant evidence to support their use. The Describe, Investigate, Create, Evaluate approach can provide a structured method to investigate and treat BPSD with flexibility to use in multiple treatment settings., (Copyright © 2019. Published by Elsevier Inc.)

Objectives: To investigate the psychometric properties and utility of the Appraisals of DisAbility Primary and Secondary Scale-Short Form (ADAPSS-sf), a measure of cognitive appraisals, among adults with pediatric-onset SCI. To examine the relation of the ADAPSS-sf to demographics, injury characteristics, and secondary health and psychosocial outcomes., Study Design: A structured telephone interview was conducted to obtain measures of ADAPSS-sf, pain, sleep, secondary health complications, and psychosocial functioning., Setting: Community in United States and Canada., Participants: Individuals who sustained an SCI at 18 years of age or younger (N = 115) were initially interviewed at age 19 years or older and followed annually., Results: Study findings support sound psychometrics of the ADAPSS-sf. The measure demonstrated strong test-retest reliability and internal consistency. There were no differences on ADAPSS-sf scores in relation to current age, gender, race, etiology, injury severity, or injury level. Individuals who sustained SCI at an older age were more likely to endorse negative appraisals of their injury. Results suggest that higher negative SCI-related appraisals were related to higher mental health difficulties. Negative SCI-related appraisals were associated with sleep difficulties, pressure injuries, pain, distress from pain, and poor overall subjective ratings of health., Conclusions: This study confirms the use of the ADAPSS-sf in a pediatric-onset SCI adult population by demonstrating its good internal validity, test-retest reliability, convergent and face validity, and brevity. Moreover, the current study revealed that such appraisals are associated with both psychosocial and secondary health outcomes, further supporting the ADAPSS-sf as a valuable tool for clinicians and researchers.

Introduction: Parkinson's disease (PD) is managed primarily by dopamine agonists and physiotherapy while virtual reality (VR) has emerged recently as a complementary method. The present study reviewed the effectiveness of VR in rehabilitation of patients with PD., Methods: Literature search up to June 2019 identified ten studies (n = 343 participants) suitable for meta-analysis and 27 studies (n = 688 participants) for systematic review. Standard mean difference (SMD) and 95% confidence intervals (CI) were calculated using a random effects model., Results: In meta-analysis, compared with active rehabilitation intervention, VR training led to greater improvement of stride length, SMD = 0.70 (95%CI = 0.32-1.08, p = 0.0003), and was as effective for gait speed, balance and co-ordination, cognitive function and mental health, quality of life and activities of daily living. Compared with passive rehabilitation intervention, VR had greater effects on balance: SMD = 1.02 (95%CI = 0.38-1.65, p = 0.002). Results from single randomised controlled trials showed that VR training was better than passive rehabilitation intervention for improving gait speed SMD = 1.43 (95%CI = 0.51-2.34, p = 0.002), stride length SMD = 1.27 (95%CI = 0.38-2.16, p = 0.005) and activities of daily living SMD = 0.96 (95%CI = 0.02-1.89). Systematic review showed that VR training significantly (p < 0.05) improved motor function, balance and co-ordination, cognitive function and mental health, and quality of life and activities of daily living., Conclusion: VR used in rehabilitation for patients with PD improves a number of outcomes and may be considered for routine use in rehabilitation.

Background: Children with intellectual disability (ID) frequently have significant educational, social and health care needs, resulting in caregivers often experiencing a wide range of negative effects. This paper aims to determine the impact of childhood ID on caregivers' health-related quality of life (HRQoL) across co-morbid diagnostic groups. The second aim of this study is to determine the risk factors associated with lower HRQoL in this population., Methods: Caregivers of a child with ID aged between 2 and 12 years old completed an online survey to determine their HRQoL using the EQ-5D-5L measure. They were also asked demographic questions and about their dependent child's level of behavioural and emotional difficulties., Results: Of the total sample of 634 caregivers, 604 caregivers completed all five questions of the EQ-5D-5L. The mean age of caregivers was 39.1 years and 91% were women. Caregivers spent on average 66.6 h per week caring for their child related to their child's disability. The mean EQ-5D-5L score of caregivers was 0.80 (95% confidence interval: 0.79, 0.82), which is below the estimated Australian population norms (mean utility score of 0.92) for the age-equivalent population. Caregivers of children with autism spectrum disorders reported the lowest HRQoL (0.77, 95% confidence interval: 0.74, 0.79) of the five included co-morbid diagnostic groups. Caregivers with a lower income, a perceived low level of social support and children with higher degree of behavioural and emotional problems were likely to have a statistically lower HRQoL., Conclusions: This is the first study to produce utility values for caregivers of children with ID. The utility values can be used to compare health states and can be used to inform comparative cost-effectiveness analyses. Demonstrating that caregivers of children with ID have reduced HRQoL and that this is associated with the degree of behavioural and emotional problems has important policy implications, highlighting the potential for policy interventions that target behavioural and emotional problems to improve outcomes for caregivers., (© 2019 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Background: The asymmetry of motor manifestations present in Parkinson's disease (PD) suggests the existence of differences between both hemispheres. As a consequence, this asymmetry might contribute to different PD clinical phenotypes., Objective: To study the relationship between motor symptom laterality with motor, non-motor symptoms (NMS), freezing of gait (FOG), and quality of life (QoL) impairment in PD., Methods: In this cross-sectional study, we measured motor symptoms severity and complications with the Unified Parkinsons' disease Rating Scale (UPDRS), FOG with the FOG questionnaire, QoL with the 39-item PD Quality of Life Questionnaire Summary Index, and NMS with the NMS, Visual Analogue Scales for Pain and Fatigue, Beck Depression Inventory-II, Impulsive-Compulsive Disorders, and PD Sleep and Cognitive Rating scales. We defined left and right motor laterality using the UPDRS part III. We used comparative, regression, and effect size analyses to evaluate the impact of asymmetry on motor and NMS, FOG, and QoL., Results: 342 left (LPD) and 310 right (RPD) patients, with a mean age of 62.0±8.8 years, were included. In multivariate regression analysis, LPD was associated with a greater motor (OR = 1,50, 95% CI 1.02-2.21), FOG (OR = 1.56, 95% CI 1.01-2.41), and overall NMS impairment (OR = 1.43, 95% CI 1.001-2.06), and better QoL (OR = 0.52 95% CI 0.32-0.85). Overall, only a mild effect size was found for all comparisons in which significant differences were present., Conclusion: In this large multicenter study, motor symptom laterality seems to carry a mild but significant impact on PD clinical manifestations, and QoL.

Family caregivers often feel ill-equipped to handle bothersome behavioral and psychological symptoms of dementia, such as agitation, apathy, and sleep disturbances, leading to increased caregiver distress and nursing home placement for people with dementia. Therapies for such symptoms are currently limited and non-pharmacological options are preferred, given potential side effects of medications. Neurologic music therapy (NMT) could provide an additional treatment option for managing behavioral and psychological symptoms for community-dwelling people with dementia and their caregivers. This pilot study sought to evaluate the feasibility, acceptability, and effectiveness of home-based NMT for behavioral and psychological symptoms of dementia. Eighteen persons with dementia-caregiver dyads were enrolled to receive one-hour weekly sessions of home-based NMT for 6 weeks. Demographic, quality of life, neuropsychiatric symptom, and caregiver burden and self-efficacy information was collected at baseline, 6 weeks, and 12 weeks. Seven dyads (38.9%) withdrew from therapy before completing all sessions; these participants had higher Neuropsychiatric Inventory scores and were of older age at baseline. For those who completed therapy, neuropsychiatric symptom scores improved at 6 weeks, an effect that was sustained at 12 weeks. No other outcome measures changed significantly after therapy. Initiating NMT too late in the course of dementia, when behavioral symptoms are already present, may be impractical for people with dementia and increase caregiver stress, even when provided within the home. Introducing and incorporating the principles of NMT earlier in the course of dementia could allow for increased comfort and benefit for people with dementia and their caregivers., (© American Music Therapy Association 2019. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Neuropsychiatric symptoms (NPS) are very common in patients with mild cognitive impairment (MCI) and Alzheimer's disease (AD) dementia and are associated with various disadvantageous clinical outcomes including a negative impact on quality of life, caregiver burden, and accelerated disease progression. Despite growing evidence of the efficacy of (non)pharmacological interventions to reduce these symptoms, NPS remain underrecognized and undertreated in memory clinics. The BEhavioural symptoms in Alzheimer's disease Towards early Identification and Treatment (BEAT-IT) study is developed to (1) investigate the neurobiological etiology of NPS in AD and (2) study the effectiveness of the Describe, Investigate, Create, Evaluate (DICE) approach to structure and standardize the current care of NPS in AD. By means of the DICE method, we aim to improve the quality of life of AD patients with NPS and their caregivers who visit the memory clinic. This paper describes the protocol for the intervention study that incorporates the latter aim., Methods: We aim to enroll a total of 150 community-dwelling patients with MCI or AD and their caregivers in two waves. First, we will recruit a control group who will receive care as usual. Next, the second wave of participants will undergo the DICE method. This approach consists of the following steps: (1) describe the context in which NPS occur, (2) investigate the possible causes, (3) create and implement a treatment plan, and (4) evaluate whether these interventions are effective. Primary outcomes are the quality of life of patients and their caregivers. Secondary outcomes include NPS change, caregiver burden, caregivers' confidence managing NPS, psychotropic medication use, the experiences of patients and caregivers who underwent the DICE method, and the cost-effectiveness of the intervention., Conclusions: This paper describes the protocol of an intervention study that is part of the BEAT-IT study and aims to improve current recognition and treatment of NPS in AD by structuring and standardizing the detection and treatment of NPS in AD using the DICE approach., Trial Registration: The trial was registered on the Netherlands Trial Registry ( NTR7459 ); registered 6 September 2018.

Importance: Neuropsychiatric behaviors of persons with dementia, including agitation, aggression, and rejection of care, are almost universal; occur throughout the disease process; and have negative consequences for both persons with dementia and their caregivers. Nonpharmacological approaches are now recognized as first-line treatment to address these behaviors. One promising approach is activity tailored to the person's interests, abilities, and physical and social environment. An evidence-based program, New Ways for Better Days: Tailoring Activities for Persons With Dementia and Their Caregivers (TAP), draws on occupational therapy principles (person-environment-occupation fit, activity analysis) to meaningfully engage persons with dementia., Objective: This case report describes the TAP protocol and clinical reasoning processes underlying use of tailored activities as a therapeutic modality to address dementia-related neuropsychiatric behaviors., Design: This is a case study of an African-American woman in her 60s caring for her father, age 92, who has severe dementia and multiple behaviors., Outcomes and Measures: Primary outcomes in this case report include the person with dementia's engagement in an activity and the reported neuropsychiatric behaviors. In addition, the caregiver's confidence in using activities is reported. These and other measures from the TAP protocol are described in full., Results: After working with an occupational therapist for eight sessions, the person with dementia's engagement in activity increased by 50% and his frequency of vocal disturbance decreased, and the caregiver felt more confident in using activities with her father., Conclusion and Relevance: This case report illustrates how occupational therapists working with families of persons with dementia can use the TAP protocol to help them manage neuropsychiatric behaviors by tailoring activities., What This Article Adds: Occupational therapists are uniquely qualified to systematically assess the cognitive functioning of persons with dementia, caregivers, and home environments and to integrate this information to derive and implement activities tailored to the person's capacities and context, thereby reducing neuropsychiatric behaviors and increasing engagement in meaningful activity., (Copyright © 2019 by the American Occupational Therapy Association, Inc.)

Purpose: To explore the feasibility of implementing the Tailored Activity Program with a cohort of people with frontotemporal dementia and their carers (dyads)., Methods: The Tailored Activity Program is an occupational therapy based intervention that involves working collaboratively with family carers and prescribes personalized activities for behavioral management in people with dementia. Twenty dyads randomized into the study (Tailored Activity Program: n = 9; Control: n = 11) were assessed at baseline and 4-months. Qualitative analyzes evaluated feasibility and acceptability of the program for the frontotemporal dementia cohort, and quantitative analyzes (linear mixed model analyzes, Spearman's rho correlations) measured the impact of the program on the dyads., Results: The Tailored Activity Program was an acceptable intervention for the frontotemporal dementia dyads. Qualitative analyses identified five themes: "carer perceived benefits", "carer readiness to change", "strategies used by carer to engage person with dementia", "barriers to the Tailored Activity Program uptake/implementation", and "person with dementia engagement". Quantitative outcomes showed an overall reduction of behavioral symptoms (F 18.34  = 8.073, p = 0.011) and maintenance of functional performance in the person with dementia (F 18.03  = 0.375, p = 0.548)., Conclusions: This study demonstrates the potential for using an activity-based intervention such as the Tailored Activity Program in frontotemporal dementia. Service providers should recognize that while people with frontotemporal dementia present with challenging issues, tailored therapies may support their function and reduce their behavioral symptoms. Implications for rehabilitation The Tailored Activity Program is an occupational therapy based intervention that involves prescribing personalized activities for behavioral management in dementia. The Tailored Activity Program is an acceptable and feasible intervention approach to address some of the unique behavioral and functional impairments inherent in frontotemporal dementia.

Objectives: To systematically investigate the relationship between motor and non-motor symptoms, and health-related quality of life (HR-QoL) in children and young adults with dystonia., Methods: In this prospective observational cross-sectional study, 60 patients (6-25 years) with childhood-onset dystonia underwent a multidisciplinary assessment of dystonia severity (Burke-Fahn-Marsden Dystonia Rating Scale, Global Clinical Impression), motor function (Gross Motor Function Measure, Melbourne Assessment of Unilateral Upper Limb Function), pain (visual analogue scale), intelligence (Wechsler Intelligence Scale), executive functioning (Behavior Rating Inventory of Executive Function) and anxiety/depression (Child/Adult Behavior Checklist). Measures were analyzed using a principal component analysis and subsequent multiple regression to evaluate which components were associated with HR-QoL (Pediatric Quality of life Inventory) for total group, and non-lesional (primary) and lesional (secondary) subgroups., Results: Patients (29 non-lesional, 31 lesional dystonia) had a mean age of 13.6 ± 5.9 years. The principal component analysis revealed three components: 1) motor symptoms; 2) psychiatric and behavioral symptoms; and 3) pain. HR-QoL was associated with motor symptoms and psychiatric and behavioral symptoms (R 2  = 0.66) for the total sample and lesional dystonia, but in the non-lesional dystonia subgroup only with psychiatric and behavioral symptoms (R 2  = 0.51)., Conclusions: Non-motor symptoms are important for HR-QoL in childhood-onset dystonia. We suggest a multidisciplinary assessment of motor and non-motor symptoms to optimize individual patient management., (Copyright © 2018. Published by Elsevier Ltd.)

Background: Patient-reported outcomes (PROs) for mental health are important for persons with Huntington disease (HD) who commonly experience symptoms of depression, anxiety, irritability, anger, aggression, and apathy. Given this, there is a need for reliable and valid patient-reported outcomes measures of mental health for use as patient-centered outcomes in clinical trials., Objective: Thus, the purpose of this study was to establish the psychometric properties (i.e., reliability and validity) of six Neuro-QoL and PROMIS mental health measures to support their clinical utility in persons with HD., Methods: 294 individuals with premanifest (n = 102) or manifest HD (n = 131 early HD; n = 61 late HD) completed Neuro-QoL/PROMIS measures of Emotional and Behavioral Dyscontrol, Positive Affect and Well-Being, Stigma, Anger, Anxiety, and Depression, legacy measures of self-reported mental health, and clinician-rated assessments of functioning., Results: Convergent validity and discriminant validity for the Neuro-QoL and PROMIS measures of Emotional and Behavioral Dyscontrol, Positive Affect and Well-Being, Stigma, Anger, Anxiety, and Depression, were supported in persons with HD. Neuro-QoL measures of Anxiety and Depression also demonstrated moderate sensitivity and specificity (i.e., they were able to distinguish between individuals with and without clinically significant anxiety and depression)., Conclusions: Findings provide psychometric support for the clinical utility of the Neuro-QoL/PROMIS measures of mental health measures in persons with HD. As such, these measures should be considered for the standardized assessment of health-related quality of life in persons with HD.

Background: Lower urinary tract dysfunction (LUTD) is a broad term describing the full spectrum of disorders in any of the stages of bladder function-storage or voiding LUTD is a clinical condition associated with emotional and behavioral disorders in children. This cross-sectional study aimed to investigate the association of emotional and behavioral symptoms and their impact on the quality of life (QoL) in children and adolescents with LUTD., Methods: Eighty-eight patients and their parents enrolled in an interdisciplinary program for children and adolescents with LUTD were included in the analysis. Child Behavior Checklist (CBCL) was used to estimate the prevalence of behavioral and emotional problems through the assessment of 14 items. Pediatric Quality of Life Inventory (versions for parents and children) was applied in the versions for parents and children to evaluate the QoL. The Pediatric Quality of Life Inventory-PedsQL, version 4.0-was applied separately for parents and patients. The association of clinical variables and aspects related to QoL of patients were evaluated through non-parametric correlations (Spearman) and multiple linear regression analysis., Results: According to CBCL's clinical scores, 56% of the patients showed total behavioral problems, 55% internalizing, and 38% externalizing. When comparing the conditions of LUTD and the CBCL scores, patients with voiding postponement had the lowest rates of total problems (P = 0.036). Children and adolescents with LUTD who also had enuresis showed a higher frequency of externalizing problems (P = 0.001), especially aggressive behavior (P = 0.013). Scores of patients with LUTD were significantly lower in all domains of QoL than normative data. Presence of behavioral problems was associated with worse QoL in all evaluated aspects. The total QoL was most influenced by the CBCL school competence scale according to the regression model analysis., Conclusions: The study findings suggest the relevance of evaluation of behavioral and social repercussions of LUTD to improve the multidisciplinary approach for this condition in pediatric population., (Copyright © 2018 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.)

Introduction: Huntington's disease (HD) is a neurodegenerative autosomal dominant disorder affecting patients' motor, behavioral and cognitive domains leading to total dependency for activities of daily life. This study compares whether gender differences in motor, cognitive and behavioral symptoms affect function and how functional impairment affects quality of life (QoL)., Methods: We recruited 2191 subjects from the REGISTRY data base that provides personal data, HD age of onset, visit date, CAG mutation size, UHDRS and TFC scores from at least one visit. For 1166 participants SF-36 was also available. We calculated Spearman coefficients for correlations between particular symptomatic domains and functional scales, Fisher z-transform was used to test whether differences in correlations between genders were statistically significant. Simultaneous linear regression with least-square fit method was used to determine for how much variability in functional scales the particular symptomatic domains are responsible. ANOVA was used to look for QoL differences between TFC-stage based groups. Baseline statistics showed no significant differences between genders., Results: Motor, cognitive and behavioral domains contributed significantly to function and independence. The motor domain contributed most followed by the cognitive and to a lesser degree by the behavioral domain. Motor symptoms correlated more with functional ability and influenced function variability more in women than in men. The decline in functional abilities correlated significantly with QoL decline., Conclusion: Motor symptoms have highest impact on function in HD, moreover these symptoms affect female function and independence more than males. Results indicate that symptomatic treatment targeting motor symptoms is needed to improve HD function and QoL., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Background: Caregivers play a major role in providing care for patients with Alzheimer's disease (AD) and are themselves at higher risk of health comorbidities., Aim: To address the impact of neuropsychiatric symptoms of patients in different stages of AD on their caregivers' burden., Design: This prospective study enrolled 260 AD patients with clinical dementia rating (CDR) of 0.5, 1 and 2 at a tertiary medical center., Methods: All patients were tested using the mini-mental state examination (MMSE), the cognitive abilities screening instrument (CASI), the neuropsychiatric inventory (NPI) and the CDR scale. Data regarding therapeutic outcomes of anti-Alzheimer's drugs were also collected. Caregivers were tested using NPI., Results: The mean follow-up interval was 25.0 ± 12.2 months, and two patients died during follow-up. NPI-burden was positively correlated with NPI-sum ( r  = 0.822, P  <   0.001) but negatively correlated with years of education ( r  = -0.140, P  =   0.024), CASI score ( r  = -0.259, P  <   0.001) and MMSE score ( r  = -0.262, P  <0.001). Multiple linear regression analysis showed that only NPI-sum was independently associated with mean NPI-burden. Both higher mean CASI and MMSE scores had better therapeutic outcome of anti-Alzheimer's drugs ( P  =   0.001 and P =   0.005, respectively)., Conclusions: The severity of neuropsychiatric symptoms in patients with AD was positively associated with caregiver's stress, and patients with better cognitive functions, under treatment with anti-Alzheimer's drugs, had better therapeutic outcomes. To reduce the impact of neuropsychiatric symptoms, it is crucial to detect dementia in its early phases and provide early intervention with anti-Alzheimer's drugs, which might help decrease the caregiver burden, thereby improving their quality of life., (© The Author 2017. Published by Oxford University Press on behalf of the Association of Physicians. All rights reserved. For Permissions, please email: journals.permissions@oup.com)

Background: Men with biochemical recurrence of prostate cancer following local therapies often use natural supplements in an attempt to delay metastases and/or avoid the need for more aggressive treatments with undesirable side-effects. While there is a growing body of research into phytotherapeutic agents in this cohort, with some promising results, as yet no definitive recommendations can be made. This pilot study was undertaken to assess the feasibility of a fully-powered study to examine the effects of this phytotherapeutic intervention (containing turmeric, resveratrol, green tea and broccoli sprouts) on PSA doubling time in men with biochemical recurrence with a moderate PSA rise rate., Methods: A double blind, randomized, placebo-controlled parallel trial was conducted with 22 men with biochemically recurrent prostate cancer and a moderate rise rate (PSA doubling time of 4-15 months and no evidence of metastases from conventional imaging methods). Patients were randomized to either the active treatment arm or placebo for 12 weeks. The primary endpoints were feasibility of study recruitment and procedures, and measurement of proposed secondary endpoints (prostate symptoms, quality of life, anxiety, and depression as measured on the EORTC QLQ-C30 and PR-25, the IPSS and HADS). Data were collected to estimate PSA-log slopes and PSA-doubling times, using a mixed model, for both the pre-intervention and post-intervention periods., Results: Adherence to study protocol was excellent, and the phytotherapeutic intervention was well-tolerated, with similar numbers of mild-to-moderate adverse events in the active and placebo arms. Both the intervention and data collection methods were acceptable to participants. No statistical difference between groups on clinical outcomes was expected in this pilot study. There was between-subject variation in the PSA post treatment, but on average the active treatment group experienced a non-significant increase in the log-slope of PSA (pre-treatment doubling time = 10.2 months, post-treatment doubling time = 5.5 months), and the placebo group experienced no change in the log-slope of PSA (pre-treatment doubling time = 10.8 months, post-treatment doubling time = 10.9 months)., Conclusion: The findings suggest that a fully powered study of this combination is feasible in men with biochemically recurrent prostate cancer and a moderate PSA rise rate. Prostate 77:765-775, 2017. © 2017 Wiley Periodicals, Inc., (© 2017 Wiley Periodicals, Inc.)

Background: Patient reported-outcomes [PROs] are a major therapeutic goal in inflammatory bowel disease [IBD]., Methods: Between January and June 2014, patients affiliated with the French national IBD association filled out six self-questionnaires: quality of life 9QoL, according to the Short Inflammatory Bowel Disease Questionnaire [SIBDQ] and the Short-Form-36 Questionnaire [SF-36] v2); fatigue (the Functional Assessment of Chronic Illness Therapy-Fatigue [FACIT-F]); work productivity (the Work Productivity and Activity Impairment [WPAI] questionnaire); disability [the I nflammatory Bowel Disease Disability Index]; and anxiety/depression (the Hospital Anxiety and Depression scale [HADS]). Associated factors were identified by univariate and multivariate logistic regression analyses., Results: Datasets were obtained from 1185 IBD patients. Around half of patients reported poor QoL [SIBDQ <45: 53.3%], severe fatigue [FACIT-F <30: 47.4%] and/or depression [HAD-D >7: 49.4%]. One-third of the patients reported anxiety [HAD-A >7: 30.3%] and/or moderate [22.4%] or severe [11.9%] disability. About half of them reported presenteeism and moderate-to-severe loss of work productivity and loss of activity. Poor QoL, severe fatigue, severe disease-related disability, and/or high WPAI were all associated with female gender, unemployment, and disease activity. Poor QoL, severe fatigue, and high WPAI were also associated with the use of tumour necrosis factor antagonists. A history of surgery was associated with poor QoL, whereas age was associated with severe fatigue. Severe depression was associated with female gender and disease activity., Conclusions: The disease burden is very high in IBD, with poor QoL, fatigue, work impairment, and depression in half of patients. Marked disability and anxiety were reported by one-third of patients., (Copyright © 2016 European Crohn’s and Colitis Organisation (ECCO). Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Objective: Family needs of patients with acquired brain injuries have been studied for about three decades. In this study, we assessed the needs, the quality of life and the psychological state of relatives of patients with locked-in syndrome (LIS)., Design: A survey was carried out using the family needs' questionnaire (FNQ)., Subjects and Methods: Thirty relatives of patients with LIS fully completed the FNQ., Results: The most important need reported by families corresponded to the need for medical information. The highest percentage of satisfaction (66%) was also observed for this need. Among the needs for information, specifically, the most important for LIS' relatives was to know that the patient's needs and wishes were respected by the professional staff, which were fulfilled in 93% of the sample. The need for emotional support was the least important and had the lowest percentage of satisfaction (55%). The number of met/unmet needs correlated with the quality of life of the families. Most of the relatives reported anxiety feelings and depressive thoughts., Conclusions: Receiving accurate medical information is the most important need for family of patients with LIS and their quality of life is correlated with the fulfilment of their needs.

Objectives: We aimed to investigate the symptom profiles in subsets of fibromyalgia patients according to the subgroups created from the satisfaction of the 1990 American College of Rheumatology (ACR) diagnostic criteria (1990c) and/or the modified 2010 ACR preliminary diagnostic criteria (m-2010c)., Methods: A total of 913 (84 men) participants took part in this cross-sectional study. Participants were grouped as follows: i) 285 who did not fulfil any ACR diagnostic criteria (non-fibromyalgia); ii) 73 who fulfilled the 1990c only; iii) 96 who fulfilled the m-2010c only; iv) 459 who fulfilled both ACR diagnostic criteria. Experimental and clinical pain, chronic pain self-efficacy, pain catastrophising, fibromyalgia severity, fatigue, health-related quality of life, depression, state anxiety and physical fitness were assessed by means of several questionnaires and tests., Results: Overall, the differences were consistent across all study outcomes (all, overall p<0.001), showing that the subgroup fulfilling both diagnostic criteria had the worst profile of all the subgroups, whereas those fulfilling any diagnostic criteria (non-fibromyalgia participants) had the most favourable results. Furthermore, the subgroup fulfilling the m-2010c only had a worse profile than the subgroup fulfilling the 1990c only, and presented similar but slightly better results than those fulfilling both diagnostic criteria., Conclusions: Our results reinforce the understanding of fibromyalgia as a heterogeneous condition. Subgrouping of fibromyalgia patients is highly recommendable, since these subgroups show diverse clinical pictures and therefore treatment options should be individually tailored to their specific profile. The combination of 1990c and the m-2010c is potentially useful to identify subgroups of fibromyalgia patients.

The older patient population is growing rapidly around the world and in the USA. Almost half of seniors over age 65 who live at home are dissatisfied with their sleep, and nearly two-thirds of those residing in nursing home facilities suffer from sleep disorders. Chronic and pervasive sleep complaints and disturbances are frequently associated with excessive daytime sleepiness and may result in impaired cognition, diminished intellect, poor memory, confusion, and psychomotor retardation all of which may be misinterpreted as dementia. The key sleep disorders impacting patients with dementia include insomnia, hypersomnolence, circadian rhythm misalignment, sleep disordered breathing, motor disturbances of sleep such as periodic leg movement disorder of sleep and restless leg syndrome, and parasomnias, mostly in the form of rapid eye movement (REM) sleep behavior disorder (RBD). RBD is a pre-clinical marker for a class of neurodegenerative diseases, the "synucleinopathies", and requires formal polysomnographic evaluation. Untreated sleep disorders may exacerbate cognitive and behavioral symptoms in patients with dementia and are a source of considerable stress for bed partners and family members. When left untreated, sleep disturbances may also increase the risk of injury at night, compromise health-related quality of life, and precipitate and accelerate social and economic burdens for caregivers.

Background: Limited information is available on the health behavior profile of patients with premature acute coronary syndrome (ACS). The purpose of this study is to desribe the health bahvior of young patients with ACS at the baseline and 1 year post-ACS and examine sex differences., Methods: GENESIS-PRAXY is a prospective cohort study of adults (18-55 years old) hospitalized with ACS from 26 centers located in Canada, United States, and Switzerland. Data on diet, physical activity, smoking, alcohol consumption, and recreational drug use were collected through self-administered questionnaires at baseline and 1 year post-ACS., Results: Our analysis included 740 patients with complete data. At baseline, the health behavior profile of young patients with ACS was worse than that of the general population. Men had a lower fruit and vegetable intake, consumed alcohol more, and used recreational drugs more than women. Conversely, fewer men than women were smokers (34% vs 42%). At 1 year post-ACS, the proportion of those consuming ≥5 daily servings of fruits and vegetables increased modestly (+5% vs +1%, for men vs women) but remained lower than the general population. Among women, the prevalence of smoking remained about twice as high as the general population. Recreational drug use also remained higher than in the general population., Conclusions: Despite small improvements at 1 year post-ACS, the health behavior profile of young patients remained worse than that of the general population. Greater efforts to improve health behaviors post-ACS among young patients are needed, and a sex-based approach may be required to ensure successful behavioral changes., (Copyright © 2015 Elsevier Inc. All rights reserved.)

Purpose: Large cohort studies are needed taking into account cancer-related, personal, biological, psychobehavioral, and lifestyle-related factors, to guide future research to improve treatment and supportive care. We aimed to evaluate the feasibility of a comprehensive baseline assessment of a cohort study evaluating the course of quality of life (QoL)., Methods: Newly diagnosed head and neck cancer (HNC) patients were asked to participate. Assessments consisted of questionnaires (635 items), a home visit (including a psychiatric interview, physical tests, and blood and saliva collection), and tissue collection. Representativeness of the study sample was evaluated by comparing demographics, clinical factors, depression, anxiety, and QoL between responders and non-responders. Feasibility was evaluated covering the number of questions, time investment, intimacy, and physical burden., Results: During the inclusion period (4 months), 15 out of 26 (60 %) patients agreed to participate. Less women participated, 13 % in responders group versus 63 % in non-responders group (p = 0.008). No other differences were found between responders and non-responders. Responders completed more than 95 % of the questionnaires' items and rated the number of questions, time investment and intimacy as feasible, and the physical and psychological burden as low. It took on average 3 h to complete the questionnaires and 1.5 h for the home visit., Conclusions: This study reveals that a comprehensive assessment including various questionnaires, physical measurements, and biological assessments is feasible according to patients with newly diagnosed HNC. A large prospective cohort study has started aiming to include 739 HNC patients and their informal caregivers in the Netherlands.

Background: Despite its importance in the lived experience of dementia, symptom fluctuation has been little studied outside Lewy body dementia. We aimed to characterize symptom fluctuation in patients with Alzheimer's disease (AD) and mixed dementia., Methods: A qualitative analysis of health records that included notations on good days and bad days yielded 52 community-dwelling patients (women, n = 30; aged 39-91 years; mild dementia, n = 26, chiefly AD, n = 36)., Results: Good days/bad days were most often described as changes in the same core set of symptoms (e.g. less/more verbal repetition). In other cases, only good or only bad days were described (e.g., no bad days, better sense of humor on good days). Good days were typically associated with improved global cognition, function, interest, and initiation. Bad days were associated with frequent verbal repetition, poor memory, increased agitation and other disruptive behaviors., Conclusions: Clinically important variability in symptoms appears common in AD and mixed dementia. Even so, what makes a day "good" is not simply more (or less) of what makes a day "bad". Further investigation of the factors that facilitate or encourage good days and mitigate bad days may help improve quality of life for patients and caregivers.

Objectives: To examine the validity and reliability of the Menopause-specific Quality of Life (MENQOL) questionnaire in a sample of women with diabetes in Malaysia, with the secondary aim of determining whether MENQOL domain scores were associated with depression and diabetes., Methods: A total of 337 postmenopausal women (241 with diabetes, 96 controls) were evaluated. Construct validity was evaluated using principal components analysis (PCA) and comparing scale items against the mental component score of the Short Form-12 (SF-12 MCS), and against the Center for Epidemiologic Studies Depression Scale 10 (CES-D 10). Consistency assessment was conducted using Cronbach's α., Results: The internal consistencies for the physical (PHS), psychosocial (PS), sexual (VSS) and vasomotor domains were 0.86, 0.79, 0.79 and 0.70, and 0.90 for the full scale of MENQOL. PCA revealed a four-factorial model. Diabetes and non-diabetes subjects experienced their first period (13.25 vs. 13.10 years, p = 0.680) and achieved menopause around the same age (49.35 vs. 48.87 years, p = 0.426). We found significant variations in the MENQOL's PHS and PS domain scores that could be explained by SF-12 PCS (25%) and SF-12 MCS (20%) sub-scales. The validity of the MENQOL domains was demonstrated through significant associations with the equivalent SF-12 MCS and PCS subscales. The PS domain of the MENQOL also predicted the likelihood of symptoms of depression (1.42, 95% confidence interval 1.01-2.02)., Conclusions: This study confirms the validity and internal consistency of the MENQOL questionnaire for measuring quality of life in postmenopausal women with diabetes, suggesting that the instrument can be used to screen people for menopausal symptoms.

Purpose: The objective was to analyze quality of life in a very long-term follow-up study of now adult individuals, treated for hydrocephalus (without spina bifida) during infancy., Methods: The entire series was population-based, and the subgroup under study consisted of the 29 individuals without intellectual disability, who consented to participate. About one third had concomitant mild cerebral palsy or epilepsy or both. A Finnish validated questionnaire, the 15D, was used to measure quality of life., Results: There was no significant difference between the study group and the controls with regard to the total quality of life score. Individuals with associated cerebral palsy and/or epilepsy had a lower total score compared with both those without associated impairments and controls. Most participants differed from controls in the dimension of mental/memory function which pertains to executive functions, an ability of considerable importance for daily life skills., Conclusion: It is important to follow children with hydrocephalus over time--due to the different etiological panorama, interventions, and associated impairments this group displays. This is the only way to learn more about critical factors that require attention and that predict quality of life in adulthood.

The objective of this study is to determine the long-term outcome and consequences of Guillain-Barré syndrome (GBS) in children. This is an observational cross-sectional cohort study of children diagnosed with GBS (0-18 years old) at the Sophia Children's Hospital in Rotterdam from 1987 to 2009. All patients were invited for a structured interview, questionnaires, and full neurologic exam to record their current clinical condition focused on complaints and symptoms, neurological deficits, disabilities, behavior, and quality of life. Thirty-seven patients participated, 23 were now adults, with a median age of 20 years (range 4-39 years) and a median follow-up time of 11 years (range 1-22 years). Residual complaints were reported by 24 (65%) patients, including paresthesias (38%), unsteadiness of gait in the dark (37%), painful hands or feet (24%), and severe fatigue (22%). Four patients had severe neurological deficits, including facial diplegia and limb weakness. Two patients had had a recurrence of GBS. In 10 patients (26%), GBS had a negative impact on their school career. Questionnaires identified a wide range of behavioral problems. Quality of life was below normal on the subscale vitality, and above normal on the subscales social functioning and positive emotions in the adult group. Most children show good recovery of neurological deficits after GBS, but many have persisting long-term residual complaints and symptoms that may lead to psychosocial problems interfering with participation in daily life., (© 2014 Peripheral Nerve Society.)

Background: Behavioral and psychological symptoms of dementia (BPSD) are often considered to be the greatest challenge in dementia care, leading to increased healthcare costs, caregiver burden, and placement into care facilities. With potential for pharmacological intervention to exacerbate behaviors or even lead to mortality, the development and rigorous testing of non-pharmacological interventions is vital. A pilot of the Tailored Activities Program (TAP) for reducing problem behaviors in people with dementia was conducted in the United States with promising results. This randomized trial will investigate the effectiveness of TAP for reducing the burden of BPSD on persons with dementia and family caregivers within an Australian population. This trial will also examine the cost-effectiveness and willingness to pay for TAP compared with a control group., Methods: This randomized trial aims to recruit 180 participant dyads of a person with dementia and their caregivers. Participants will have a diagnosis of dementia, exhibit behaviors as scored by the Neuropsychiatric Inventory, and the caregiver must have at least 7 h per week contact. Participants will be randomly allocated to intervention (TAP) or control (phone-based education sessions) groups, both provided by a trained occupational therapist. Primary outcome measure will be the revised Neuropsychiatric Inventory - Clinician rating scale (NPI-C) to measure BPSD exhibited by the person with dementia., Conclusions: This trial investigates the effectiveness and cost-effectiveness of TAP within an Australian population. Results will address a significant gap in the current Australian community-support base for people living with dementia and their caregivers.

Epilepsy is a chronic neurological disorder that results in recurring seizures and can have a significant adverse effect on health-related quality of life (HRQL). The Neuro-QoL measurement initiative is an NINDS-funded system of patient-reported outcome measures for neurology clinical research, which was designed to provide a precise and standardized way to measure HRQL in epilepsy and other neurological disorders. Using mixed-method and item response theory-based approaches, we developed generic item banks and targeted scales for adults and children with major neurological disorders. This paper provides empirical results from a clinical validation study with a sample of adults diagnosed with epilepsy. One hundred twenty-one people diagnosed with epilepsy participated, the majority of which were male (62%) and Caucasian (95%), with a mean age of 47.3 (SD=16.9). Baseline assessments included Neuro-QoL short forms and general and external validity measures. The Neuro-QoL short forms that are not typically found in other epilepsy-specific HRQL instruments include Stigma, Sleep Disturbance, Emotional and Behavioral Dyscontrol, and Positive Affect and Well-Being. Neurology Quality-of-Life short forms demonstrated adequate reliability (internal consistency range=.86-.96; test-retest range=.57-.89). Pearson correlations (p<.01) between Neuro-QoL forms of emotional distress (anxiety, depression, stigma) and the QOLIE-31 Emotional Well-Being subscale were in the moderate-to-strong range (r's=.66, .71 and .53, respectively), as were relations with the PROMIS Global Mental Health subscale (r's=.59, .74 and .52, respectively). Moderate correlations were observed between Neuro-QoL Social Role Performance and Satisfaction and the QOLIE-31 Social Function (r's=.58 and .52, respectively). In measuring aspects of physical function, the Neuro-QoL Mobility and Upper Extremity forms demonstrated moderate associations with the PROMIS Global Physical Function subscale (r's=.60 and .61, respectively). Neuro-QoL measures of perceived cognitive function (executive function and general concerns) produced moderate-to-strong correlations with the QOLIE-31 Cognition subscale (r's=.65 and .75, respectively) and moderate relations with the Liverpool Adverse Events Profile (r's=.51 and .69, respectively). Finally, the Neuro-QoL Fatigue measure demonstrated moderate associations with the QOLIE-31 Energy/Fatigue subscale (r=-.65), Liverpool Adverse Events Profile (r=.69), and the Liverpool Seizure Severity Scale (r=.50). Five Neuro-QoL short forms demonstrated statistically significant responsiveness to change at 5-7months, including Fatigue, Sleep Disturbance, Depression, Positive Affect and Well-Being, and Emotional and Behavioral Dyscontrol. Overall, Neuro-QoL instruments showed good evidence for internal consistency, test-retest reliability, convergent validity, and responsiveness to change over several months. These results support the validity of Neuro-QoL to measure HRQL in adults with epilepsy., (Copyright © 2013 Elsevier Inc. All rights reserved.)

Cross-sectional studies report notable discrepancies between patient and caregiver ratings of the quality of life of patients (QoL-p) with Alzheimer's disease (AD). This study aimed to identify the factors associated with any changes in QoL-p ratings and any discrepancies between patient and caregiver ratings of QoL-p. Three-year follow-up of a cohort of non-institutionalized patients (n = 119). QoL-p was assessed by the Quality of Life in AD (QoL-AD) scale. We analyzed the influence of functional and cognitive status and behavioral problems in patients, and burden and mental health in caregivers. Repeated measures analysis was applied to the scores of patients and caregivers on the QoL-AD, and to the discrepancies between them. Generally, patients' own ratings remained stable over time (F3,116 = 0.9, p = 0.439), whereas caregiver ratings showed a decline (F3,116 = 9.4, p < 0.001). In the analysis of discrepancies, patients with anosognosia gave higher ratings (F1,117 = 11.9, p = 0.001), whereas caregiver ratings were lower when the patient showed greater agitation (F1,117 = 13.0, p < 0.001), apathy (F1,117 = 15.4, p < 0.001), and disabilities (F1,117 = 17.1, p < 0.001), and when the caregiver experienced greater burden (F1,117 = 9.0, p = 0.003) and worse mental health (F1,117 = 10.1, p = 0.003). Patient ratings of QoL-p remain generally stable over time, whereas those of caregivers show a decline, there being significant discrepancies in relation to specific patient and caregiver factors.

Aggression is a known behavior in dementia, but there is little in the literature about risk to home-based caregivers in situations where severe aggression is present. This article examines this issue with a focus on what is known and where further research is needed. Rates of severe aggression by dementia care recipients against caregivers are estimated at greater than 20%, and may be the strongest predictor of nursing home placement. Measures containing both assessment of behavior and objective measures of caregiver trauma are needed, along with interventions aimed at educating and protecting caregivers while respecting communicative properties of behavior.

Purpose: Cardiac rehabilitation (CR) has been shown to reduce cardiac risk and improve the psychosocial functioning of participants. This study examines gender differences on several psychosocial indicators across the course of CR., Methods: Patients (N = 380; 67.9% men and 32.1% women) referred from local inpatient and outpatient settings at a southeastern US academic medical facility were assessed on reported levels of depression, anxiety, panic, anger, and relationship satisfaction, using the Burns Brief Mood Survey, at the start and conclusion of a CR program. Medical variables were also assessed but are not the focus of this report. Statistical analyses included 1-way, Kruskal-Wallis, and repeated-measures analysis of variance procedures, as well as χ analyses., Results: Women reported more psychosocial symptoms at pre-CR than men, and overall, both groups improved across CR. Women with significant depression, anxiety, and panic experienced clinically significant benefit across CR. Although the percentage of men reporting clinically significant levels of anger decreased significantly across CR, clinically significant levels of anger did not significantly change among women. In addition, women did not report benefits in relationship dissatisfaction., Conclusion: This study provides further evidence that CR offers psychosocial benefit for women, as has been reported in several small clinical samples. Some notable gender differences on anger and relationship satisfaction were observed. Clinical attention may be warranted to facilitate improvement for symptoms of anger and relationship concerns among selected women who participate in CR.

Objectives: This study had two main objectives: first, to describe the social support and psychological maladjustment of children and adolescents with cerebral palsy (CP); and second, to test a mediation model where psychological maladjustment was hypothesized to mediate the link between social support and health-related quality of life (HRQL). In addition, the moderating role of gender and age was examined for this mediation model., Methods: Self- and proxy-report questionnaires on the aforementioned variables were administered to a sample of 96 children/adolescents with CP and 118 healthy controls, as well as one of their parents. Univariate and multivariate analyses of covariance were conducted to examine differences in social support and psychological maladjustment, respectively. PROCESS computational tool was used for path analysis-based mediation, moderation and moderated mediation analyses., Results: Children/adolescents with CP reported lower levels of social support than their healthy peers, but no significant differences emerged in terms of their psychological maladjustment. For children/adolescents with CP, internalizing and externalizing problems were found to mediate the link between social support and HRQL, and these indirect effects were not conditional upon age or gender., Discussion: Children and adolescents with CP are likely have more negative perceptions of social support, but not necessarily more psychological adjustment problems than their healthy, able-bodied peers. Results further suggest that interventions targeting social support perceptions may positively affect HRQL outcomes in children/adolescents with CP, through the improvement of internalizing and externalizing dimensions of their psychological adjustment., Implications for Rehabilitation: Social support perceptions are important intervention targets in psychosocial rehabilitation with children and adolescents with CP. Children and adolescents with CP do not necessarily present increased psychological maladjustment. Interventions targeting these children and adolescents' social support may promote their psychological adjustment and health-related quality of life. Developmental specificities, such as age and gender differences, should be considered when planning and implementing psychosocial interventions.

Background: Although prior studies have documented the co-occurrence of generalized anxiety disorder (GAD) and alcohol use disorder (AUD) disorder, there is a paucity of research assessing the patterns of alcohol involvement among individuals with GAD symptoms. This study investigated subtypes, or classes, of comorbid AUD and GAD symptoms, and assessed the association of class membership with health-related quality of life., Methods: Using data from the Wave 1 of the National Epidemiologic Survey on Alcohol and Related Conditions, a latent class analysis was performed on the subset of individuals who were current drinkers and had reported ever experiencing a 6-month episode of feeling tense, nervous, or worried most of the time. We examined the association of these latent classes with physical and mental health-related quality of life measured by the Short Form-12, version 2., Results: Latent class analysis identified a 5-class model of AUD and GAD symptoms. A significant graded relationship was observed between the ordered classes and severity of impairment on the mental health scale of the Short Form-12, version 2, but no significant relationship was found with the physical health scale., Conclusions: Mental, but not physical, health-related quality of life in this population is associated with both the number and pattern of comorbid GAD and AUD symptoms.

Background: Alzheimer's disease (AD) is a chronic medical condition with symptoms that compromise patients' quality of life (QoL). The identification of the factor predicting QoL in AD is essential to develop more effective interventions. Recent research suggests that these factors could be different for the distinct informants. This study explores the QoL predictors considering three different sources of information: patients, caregivers, and healthcare staff., Methods: In this cross-sectional study, a sample of 102 patients, their primary caregivers, and 15 members of the healthcare staff evaluated patients' QoL (QoL-AD Scale). Patients' and caregivers' demographic and clinical data (cognitive function, neuropsychiatric symptoms, depression, and caregivers' burden) were considered as QoL predictors., Results: In multivariate-adjusted linear regression analyses, we observed that patients' ratings were mainly affected by their mood whereas caregivers' ratings were also negatively influenced by patients' irritability and burden. According to staff ratings, both psychotic symptoms and neuroleptics were associated with lower QoL., Conclusions: Our findings suggest that depression is the main variable related to patients' QoL and that more careful management of neuropsychiatric disorders is necessary. Both proxies' ratings are not equivalent to patients' reports in terms of predictors but they are complementary. Thus, a thorough QoL assessment should consider separately the perspective of the different informants.

The authors analysed the quality of life and survival of patients from 1 to 4 years after operative treatment for stenosmg lesions of internal carotid arteries (Group One) or pathological kinking of internal carotid arteries (Group Two). The highest frequency of the problems in the first group was in the components pain/discomfort (91.7%) and motility (88.9% of the interviewed). In the second group of patients, the most commonly encountered disorders were pain/ discomfort (66.7%) and anxiety/depression (66.7% of the interviewed). Also analysed was the influence of the duration of anaesthesia and the type of an anaesthetic used to maintaining anaesthesia (sodium thiopental or propofol) on the postoperative quality of life. There were no statistically significant differences in the postoperative quality of life by the health index and EQVAS in the groups of the patients having received various anaesthetics in order to maintain anaesthesia (p=0.541 and p=0.148, respectively).

Parkinson's disease (PD) is a common neurodegenerative disorder diagnosed by the presence of bradykinesia and at least 1 of the symptoms of rigidity, resting tremor, or postural instability. It is increasingly recognized that nonmotor symptoms are common and can adversely affect quality of life, yet they often are not diagnosed and consequently are often untreated. Nonmotor symptoms include neuropsychiatric issues such as anxiety, depression, hallucinations, impulse control disorders, and cognitive impairment, as well as autonomic dysfunction, which may present as gastrointestinal, urinary, and sexual disturbances. Nonmotor symptoms also include excessive sweating, orthostatic hypotension, and sleep disturbances. Management of PD requires recognition of both motor and nonmotor symptoms as well as an understanding of the relationship between these symptoms and how they can be affected by treatments for PD. Therapy should be individualized for each patient, as treatments for the motor symptoms of PD can improve some nonmotor symptoms while they can worsen others. In many cases, symptom-specific treatments are necessary to control nonmotor symptoms of PD.

Unlabelled: Patients submitted for prostatectomy were evaluated regarding their quality of life, behavioral problems, and marital adjustment. Thirty-two patients aged 54-76 years old were included. The results indicated that prostatectomy does not prevent normal psychological functioning, although there is a relationship between smoking and lower quality of life in these patients., Introduction: Different types of monotherapy for prostate cancer leads to impairment in urinary and sexual functions, but prostatectomy seems to have worse results in physical functioning when compared with other treatments. Nevertheless, patients report high quality of life (QOL) levels, even when there are comments about the impact of sexual dysfunction on psychological health. The objectives of this work were to analyze levels of QOL, marital adjustment (MA), and behavioral problems (BP) of patients submitted to prostatectomy., Methods: Thirty-two patients from 54 to 76 years of age who underwent radical prostatectomy were evaluated during their follow-up appointments with the medical staff at the urology department of a private medical school. QOL scores were obtained from the World Health Organization Quality of Life instrument, short version. BP scores of patients younger than 60 years of age were assessed through the Adult Self-Report, whereas patients older than 60 years were assessed through the Older Adult Self-Report. MA scores were obtained by using the Locke-Wallace Marital Adjustment Test., Results: The patients reported relatively high levels of QOL and MA, along with low BPs. Marital support was associated with higher levels of QOL. BPs were associated with lower physical and total QOL scores. Smoking habits were associated with lower levels of MA, psychological health, and QOL. Erectile dysfunction was related to lower MA levels and lower QOL scores., Conclusions: Overall, the patients had high self-reported QOL levels, which indicated that physical impairments related to surgery did not prevent patients to return to normal functioning., (Copyright © 2011. Published by Elsevier Inc.)

Aim: To estimate the impact of different types of language disorders on socio-emotional development and health-related quality of life (HRQOL) in 8-year-old children., Method: In a prospective cohort including 13 427 newborns, of 10 911 eligible children (66 excluded because of intellectual disability or foreign language, 2448 lost to follow-up due to house moves, refusal, death or other reasons) written consent was obtained from the parents of 6051 then 8-year-old children (55%). Questionnaires, completed by the parents of 4745 children (2323 males, 2412 females) and the teachers of 4771 children (2360 males, 2411 females), included validated measures to define type of language disorder and to assess socio-emotional development and HRQOL., Results: In 377 (8.2%) children, speech/language disorders were identified. Children with receptive language disorders had more unfavourable scores for extraversion (9.7, 99% CI 9.3-10.1, p=0.006), school attitude (7.8, 99% CI 7.4-8.2; p<0.001), agreeableness (9.1, 99% CI 8.6-9.6, p<0.001; normal ranges 7-13), and quality of life (49.6, 99% CI 48.8-51.0, p<0.001; normal range 40-60), as compared to children without these disorders. Pragmatic disorders and suspected autism were associated with the most unfavourable scores, for school attitude 8.1 (99% CI 6.9-9.3, p<0.001) and 7.5 (99% CI 6.1-8.9, p=0.002), and for quality of life 42.9 (99% CI 40.3-45.5, p<0.001) and 36.2 (99% CI 30.0-42.4, p<0.001)., Interpretation: Language impairment at school age has a large impact on children's behaviour and daily life., (© The Authors. Journal compilation © Mac Keith Press 2010.)

Introduction: To assess the impact of intravesically injected botulinum A toxin (BoNT/A) upon bladder pain, urological complaints, symptoms of anxiety and depression, and Quality of Life (QoL) in patients with painful bladder symptoms (PBS) refractory to conventional treatment., Patients and Methods: In this prospective study 14 patients received one injection of BoNT/A (200 U diluted in 20 ml 0.9% NaCl), under cystoscopic guidance. At pre- and 3 months post- treatment all patients underwent an urological assessment (voiding diary, urodynamics), a pain quantification on a visual analog scale (VAS), an evaluation with the 14-item Hamilton Anxiety Rating Scale (HAM-A) to assess symptoms of psychic and somatic anxiety, an evaluation with the Hamilton Depression Rating Scale (HAM-D) to assess depression, and the 36-item Medical Outcomes Study Short Form (SF-36) to assess QoL. Results. At pre-treatment all 14 patients had increased daytime and nighttime urinary frequency and high VAS scores. Nine patients had pathological HAM-A scores and all had pathological HAM-D scores. At the 3-month follow-up 10/14 patients reported a subjective improvement in pain. Mean VAS score, mean daytime and nighttime urinary frequency decreased significantly (p <0.01, <0.01 and <0.01, respectively). All domains in SF-36 and HAM-A significantly improved (p<0.01). All domains, except weight and sleep disorders, significantly improved in HAM-D, particularly somatoform symptoms (p<0.01), cognitive performance (p<0.01), and circadian variations (p<0.01)., Conclusion: In patients with refractory PBS with symptoms of anxiety, depression and poor QoL, BoNT/A intravesical treatment reduced bladder pain, improved psychological functioning, and well-being.

Objective: To examine deficits in psychological well-being (PWB) and quality-of-life (QOL) in minor depressive disorder (Min D)., Method: Ninety-three subjects entering a treatment study for Min D were assessed using the QOL, Enjoyment and satisfaction questionnaire (Q-LES-Q), and the Psychological Well-Being Scale (PWBS). Scores were compared with major depressive disorder (MDD) and normative community samples., Results: Even though subjects had mild depressive severity, Q-LES-Q total scores for the Min D sample averaged nearly two standard deviations below the community norm. Almost 40% of Min D cases had Q-LES-Q scores in the lowest 1% of the population. Responses to most Q-LES-Q items were closer to subjects with MDD than to community norms. Mean standardized PWB scores were extremely low for subscales of Environmental Mastery and Self-Acceptance, low for Purpose in Life and Positive Relations with others, but within the normal range for Personal Growth and Autonomy. QOL and PWB measures had low correlations with depressive symptom severity, and scores were similar in the presence or absence of a prior history of MDD., Conclusions: Mild depressive symptoms with Min D are associated with major deficits in QOL and PWB measures of environmental mastery and poor self-acceptance. Our findings suggest that diminished QOL and PWB may be intrinsic cognitive aspects of Min D with or without a history of MDD. It may be unnecessary in the DSM IV-TR to exclude the diagnosis of Min D if a subject has had a past episode of MDD. Minor depression exists along a continuum of depression. Deficits in psychological well-being and quality-of-life in minor depression are severe. No difference in these measures if minor depression existed with or without a history of major depression.

Background: Non-motor symptoms (NMS) of Parkinson's disease (PD) are a key determinant of health, quality of life (QoL) and societal cost of PD. They are often less appreciated than motor symptoms but are important sources of disability for many PD patients., Methods: Literature search was performed using the reference databases Medline, Science Citation Index and EMBASE. The keywords used were 'non-motor symptoms', Parkinson's disease, olfaction and constipation. Papers discovered by this search were reviewed, as were references cited therein., Results: Contrary to common perception, many NMS of PD occur early in PD and some may even predate the diagnosis of PD that is based on motor signs. These include olfactory deficit, sleep problems such as rapid eye movement behaviour disorder, constipation and the more recently described male erectile dysfunction., Conclusion: There is compelling evidence that non-motor symptoms of PD play a dominant role in the QoL and disability of PD patients and the QoL of their 'informal' carers. Effective clinical management of PD therefore demands that these symptoms be identified and to the extent possible treated.

LGS is a severe form of childhood epilepsy which is characterized by multiple seizures and cognitive impairment. Semi-structured interviews were conducted with 40 parents of children with LGS in the US, UK, and Italy. Parents were asked to report on their perceptions of the HRQL of their child and also to describe the impact on their own HRQL. Thematic analysis was conducted to develop themes relating to the impact on HRQL. The themes were organized into conceptual models of the impact of LGS on the HRQL of the parent and the child. The models demonstrate the complex relationships between the components of LGS and their impact on HRQL., (Copyright 2009 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.)

The aim of this study was to conduct a review of the literature to evaluate the impact of LGS on the HRQL of children with LGS and their caregivers. The literature search revealed that there is limited published research on the impact of LGS on the HRQL of the child or caregiver. LGS has a major physical impact on a child, with a high frequency of seizures, and a high rate of seizure-related injuries. It interferes with all aspects of the child's intellectual and social development. The patient, and also his/her entire family are affected. Caring for a child with LGS is described as a 'burden', with increased anxiety about injury from seizures as well as the strain associated with providing continuous care. Overall, there is a lack of research on LGS, specifically the extent of the impact of LGS on the HRQL of the child and caregiver is under-explored.