Mental health and quality of life after genetic testing for Huntington disease: a long-term effect study in Germany

Predictive genetic testing for Huntington disease (HD) might cause severe short-term psychological reactions in patients with poor mental health. Very few studies exist on the long-term effects of genetic HD testing. The aim of this study was to assess mental health and quality of life in persons who were tested for HD mutation, to compare mental health depending on the result of the genetic test (non-carriers, gene carriers, and patients with HD) and to identify predictors of mental health and quality of life via linear regression. The data were collected by self-report questionnaires. In total, 121 individuals participated in this study: 52 were non-carriers, 54 were gene carriers, and 15 were gene carriers suffering from HD. Non-carriers and gene carriers showed better mental health and quality of life than HD-patients but did not differ from each other. In non-carriers four variables predicted increased depression and low mental quality of life: low perceived social support, no intimate relationship, female sex and younger age. For gene carriers three predictors were found: low perceived social support, the expectation of an unfavorable genetic test result before the testing procedure and being childless. To prevent detrimental effects of HD testing on mental health and mental quality of life, specific attention should be paid to persons with limited social networks during genetic counseling. Assessment of expectations related to the test result and mental health prior to a genetic testing procedure may help to identify gene carriers at risk of poor coping after an unfavorable test result.

Arterial access through the right subclavian artery in surgery of the aortic arch improves neurologic outcome and mid-term quality of life

BACKGROUND: We have shown that selective antegrade cerebral perfusion improves mid-term quality of life in patients undergoing surgical repair for acute type A aortic dissection and aortic aneurysms. The aim of the study was to assess the impact of continuous cerebral perfusion through the right subclavian artery on immediate outcome and quality of life. METHODS: Perioperative data of 567 consecutive patients who underwent surgery of the aortic arch using deep hypothermic circulatory arrest have been analyzed. Patients were divided into three groups, according to the management of cerebral protection. Three hundred eighty-seven patients (68.3%) had deep hypothermic circulatory arrest with pharmacologic protection with pentothal only, 91 (16.0%) had selective antegrade cerebral perfusion and pentothal, and 89 (15.7%) had continuous cerebral perfusion through the right subclavian artery and pentothal. All in-hospital data were assessed, and quality of life was analyzed prospectively 2.4 +/- 1.2 years after surgery with the Short Form-36 Health Survey Questionnaire. RESULTS: Major perioperative cerebrovascular injuries were observed in 1.1% of the patients with continuous cerebral perfusion through the right subclavian artery, compared with 9.8% with selective antegrade cerebral perfusion (p < 0.001) and 6.5% in the group with no antegrade cerebral perfusion (p = 0.007). Average quality of life after an arrest time between 30 and 50 minutes with continuous cerebral perfusion through the right subclavian artery was significantly better than selective antegrade cerebral perfusion (90.2 +/- 12.1 versus 74.4 +/- 40.7; p = 0.015). CONCLUSIONS: Continuous cerebral perfusion through the right subclavian artery improves considerably perioperative brain protection during deep hypothermic circulatory arrest. Irreversible perioperative neurologic complications can be significantly reduced and duration of deep hypothermic circulatory arrest can be extended up to 50 minutes without impairment in quality of life.

Cataract surgery in cancer patients and its impact on quality of life as measured by the National Eye Institute Visual Functioning Questionnaire - 25 (NEI-VFQ-25)

Purpose. The measurement of quality of life has become an important topic in healthcare and in the allocation of limited healthcare resources. Improving the quality of life (QOL) in cancer patients is paramount. Cataract removal and lens implantation appears to improve patient well-being of cancer patients, though a formal measurement has never been published in the US literature. In this current study, National Eye Institute Visual Functioning Questionnaire (NEI-VFQ-25), a validated vision quality of life metric, was used to study the change in vision-related quality of life in cancer patients who underwent cataract extraction with intraocular lens implantation. ^ Methods. Under an IRB approved protocol, cancer patients who underwent cataract surgery with intraocular lens implantation (by a single surgeon) from December 2008 to March 2011, and who had completed a pre- and postoperative NEI-VFQ-25 were retrospectively reviewed. Post-operative data was collected at their routine 4-6 week post-op visit. Patients' demographics, cancer history, their pre and postoperative ocular examinations, visual acuities, and NEI-VFQ-25 with twelve components were included in the evaluation. The responses were evaluated using the Student t test, Spearman correlation and Wilcoxon signed rank test. ^ Results. 63 cases of cataract surgery (from 54 patients) from the MD Anderson Cancer Center were included in the study. Cancer patients had a significant improvement in the visual acuity (P<0.0001) postoperatively, along with a significant increase in vision-related quality of life (P<0.0001). Patients also had a statistically significant improvement in ten of the twelve subcategories which are addressed in the NEI-VFQ-25. ^ Conclusions. In our study, cataract extraction and intraocular implantation showed a significant impact on the vision-related quality of life in cancer patients. Although this study includes a small sample size, it serves as a positive pilot study to evaluate and quantify the impact of a surgical intervention on QOL in cancer patients and may help to design a larger study to measure vision related QOL per dollar spent for health care cost in cancer patients.^

Modest weight loss and physical activity in overweight patients with chronic liver disease results in sustained improvements in alanine aminotransferase, fasting insulin, and quality of life

Background and aim: Obesity is a risk factor for progression of fibrosis in chronic liver diseases such as non-alcoholic fatty liver disease and hepatitis C. The aim of this study was to investigate the longer term effect of weight loss on liver biochemistry, serum insulin levels, and quality of life in overweight patients with liver disease and the effect of subsequent weight maintenance or regain. Patients: Thirty one patients completed a 15 month diet and exercise intervention. Results: On completion of the intervention, 21 patients (68%) had achieved and maintained weight loss with a mean reduction of 9.4 (4.0)% body weight. Improvements in serum alanine aminotransferase (ALT) levels were correlated with the amount of weight loss (r=0.35, p=0.04). In patients who maintained weight loss, mean ALT levels at 15 months remained significantly lower than values at enrolment (p=0.004), while in regainers (n=10), mean ALT levels at 15 months were no different to values at enrolment (p=0.79). Improvements in fasting serum insulin levels were also correlated with weight loss (r=0.46, p=0.04), and subsequent weight maintenance sustained this improvement. Quality of life was significantly improved after weight loss. Weight maintainers sustained recommended levels of physical activity and had higher fasting insulin levels (p=0.03) at enrolment than weight regainers. Conclusion: In summary, these findings demonstrate that maintenance of weight loss and exercise in overweight patients with liver disease results in a sustained improvement in liver enzymes, serum insulin levels, and quality of life. Treatment of overweight patients should form an important component of the management of those with chronic liver disease.

Validation of the food allergy quality of life:parental burden questionnaire in the UK

Purpose - Food allergy can have a profound effect on quality of life (QoL) of the family. The Food Allergy Quality of Life—Parental Burden Questionnaire (FAQL-PB) was developed on a US sample to assess the QoL of parents with food allergic children. The aim of this study was to examine the reliability and validity of the FAQL-PB in a UK sample and to assess the effect of asking about parental burden in the last week compared with parental burden in general, with no time limit for recall given. Methods - A total of 1,200 parents who had at least one child with food allergy were sent the FAQL-PB and the Child Health Questionnaire (CHQ-PF50); of whom only 63 % responded. Results - Factor analysis of the FAQL-PB revealed two factors: limitations on life and emotional distress. The total scale and the two sub-scales had high internal reliability (all a > 0.85). There were small to moderate but significant correlations between total FAQL-PB scores and health and parental impact measures on the CHQ-PF50 (p < 0.01). Significantly greater parental burden was reported for the no-time limited compared with the time-limited version (p < 0.01). Conclusions - The FAQL-PB is a reliable and valid measure for use in the UK. The scale could be used in clinic to assess the physical and emotional quality of life in addition to the impact on total quality of life.

Non-institutionalized nonagenarians health-related quality of life and nutritional status: is there a link between them?

Introduction: Nonagenarian population, clearly increasing, shows different characteristics from the rest of elderly people. Health-related quality of life is a way to study population health in physical, psychological and social dimensions. Objectives: To examine the relationship between nutritional status and health-related quality of life in a group of free-living nonagenarians. Differences with octogenarians were also studied. Methods: Within Villanueva Older Health Study, 20 non-institutionalised people (92.5±3.5 years; 80% women) make the nonagenarian subsample. Nutritional risk was assessed by Mininutritional Assessment questionnaire, dietary intake by a 24-hour dietary recall and health-related quality of life by EuroQoL-5D questionnaire. SPSS was used for statistical analysis. Results: 40% nonagenarians were at risk of malnutrition. Dietary assessment showed magnesium, zinc, potassium, folic acid, vitamin D and vitamin E deficiencies. Problems in mobility were more frequently reported (80%). EQ-5Dindex was associated with MNA (p<0.05). Self-care dimension was associated with calcium and niacin (p<0.05), retinol and cholesterol (p<0.01) intake. Usual activities dimension was associated with niacin (p<0.01) and cholesterol(p<0.05) intake. Pain/discomfort dimension was associated with protein (p<0.01), energy, selenium and niacin (p<0.05) intake. Anxiety/depression was associated with protein(p<0.01) and selenium (p<0.05) intake. Conclusions: Risk of malnutrition is a factor associated to health-related quality of life. Results suggest that energy and some nutrient intakes could be possibly associated to health-related quality of life but further research on this influence is required.

Quality of life and chronic disease in patients receiving primary health care

Problem Statement: Chronic disease entails physical, psychological and social issues with a decrease in the quality of life. The assessment of QoL has been applied as indicator in patients with chronic diseases. Research Questions: What is the quality of life in patients with chronic disease? What are the socio-demographic variables that influence the quality of life in patients? Purpose: To assess the quality of life in patients suffering from chronic disease and identify socio-demographic variables which influence the quality of life of patients suffering from chronic disease. Research Methods: We conducted a cross-sectional analytical study using a sample composed of 228 users (134 females) from a Family Health Unit in the municipality of Viseu. Data collection was made by means of a questionnaire, consisting of sociodemographic variables, the SF-12 scale and the existence of chronic disease was assessed through the questions – “Do you currently suffer from any chronic disease?”; “If so, which one(s)?”. Findings: The most common chronic diseases were hypertension (59.9%). Female patients with a chronic disease reported worse physical functioning, role-physical and role-emotional; increased bodily pain and better quality of life regarding general health. Male patients showed worse role-physical, increased bodily pain and vitality. Sociodemographic variables which were associated with quality of life were area of residence, academic qualifications and work situation. Conclusion: Chronic disease affects quality of life negatively. Quality of life in both patients groups was associated with socio-demographic variables. Health-related quality of life is an essential issue and should be considered as a priority in health policies.

Quality of Life Profile, Overweight-Obesity and Sedentary Behavior in Elementary and High School Children of Guanacaste

The purpose of this study was to identify the quality of life profile, overweight-obesity and sedentary behavior in a group of elementary and high school children of Guanacaste. 635 students participated in the study. The participants completed a protocol by which they were anthropometrically evaluated, and also filled up a questionnaire related to sedentary behavior and quality of life. In general, the findings reflected a prevalence of overweight and obesity of 13, 9%. The most important sedentary activities were, in descending order, the small screen (watching TV, video games, computer), and certain social and cultural activities. The self-reported quality of life index was within acceptable limits but not exceeding 80 points on a scale of 1-100. There was no significant relationship between the rate of the overall quality of life, overweight, obesity and some sedentary behaviors, although some anthropometric parameters like percentage of body fat and body weight showed significant correlation with sedentary behavior and specific aspects belonging to quality of life. The study provides valuable information to health authorities, directors of educational institutions and parents about key issues related to child development.

Quality Of Life On Arterial Hypertension: Validity Of Known Groups Of Minichal.

Introductions: In the care of hypertension, it is important that health professionals possess available tools that allow evaluating the impairment of the health-related quality of life, according to the severity of hypertension and the risk for cardiovascular events. Among the instruments developed for the assessment of health-related quality of life, there is the Mini-Cuestionario of Calidad de Vida en la Hipertensión Arterial (MINICHAL) recently adapted to the Brazilian culture. Objective: To estimate the validity of known groups of the Brazilian version of the MINICHAL regarding the classification of risk for cardiovascular events, symptoms, severity of dyspnea and target-organ damage. Methods: Data of 200 hypertensive outpatients concerning sociodemographic and clinical information and health-related quality of life were gathered by consulting the medical charts and the application of the Brazilian version of MINICHAL. The Mann-Whitney test was used to compare health-related quality of life in relation to symptoms and target-organ damage. The Kruskal-Wallis test and ANOVA with ranks transformation were used to compare health-related quality of life in relation to the classification of risk for cardiovascular events and intensity of dyspnea, respectively. Results: The MINICHAL was able to discriminate health-related quality of life in relation to symptoms and kidney damage, but did not discriminate health-related quality of life in relation to the classification of risk for cardiovascular events. Conclusion: The Brazilian version of the MINICHAL is a questionnaire capable of discriminating differences on the health‑related quality of life regarding dyspnea, chest pain, palpitation, lipothymy, cephalea and renal damage.Fundamento: No cuidado ao hipertenso, é importante que o profissional de saúde disponha de ferramentas que possibilitem avaliar o comprometimento da qualidade de vida relacionada à saúde, de acordo com a gravidade da hipertensão e o risco para eventos cardiovasculares. Dentre os instrumentos criados para avaliação da qualidade de vida relacionada à saúde, destaca-se o Mini-Cuestionario de Calidad de Vida en la Hipertensión Arterial (MINICHAL), recentemente adaptado para a cultura brasileira. Objetivo: Estimar a validade de grupos conhecidos da versão brasileira do MINICHAL em relação à classificação de risco para eventos cardiovasculares, sintomas, intensidade da dispneia e lesões de órgãos-alvo. Métodos: Foram investigados 200 hipertensos em seguimento ambulatorial, cujos dados sociodemográficos, clínicos e de qualidade de vida relacionada à saúde foram obtidos por meio de consulta ao prontuário e da aplicação da versão brasileira do MINICHAL. O teste de Mann-Whitney foi utilizado para comparar qualidade de vida relacionada à saúde em relação aos sintomas e às lesões de órgãos-alvo. Teste de Kruskal-Wallis e ANOVA com transformação nos ranks foram empregados para comparar qualidade de vida relacionada à saúde em relação à classificação de risco para eventos cardiovasculares e intensidade da dispneia, respectivamente. Resultados: O MINICHAL discriminou qualidade de vida relacionada à saúde em relação aos sintomas e dano renal (lesões de órgãos-alvo), porém não discriminou qualidade de vida relacionada à saúde em relação à classificação de risco para eventos cardiovasculares. Conclusão: A versão brasileira do MINICHAL é um instrumento capaz de discriminar diferenças na qualidade de vida relacionada à saúde em relação aos sintomas de dispneia, precordialgia, palpitação, lipotímia, cefaleia e presença de dano renal.

Quality of Life and Colorectal Cancer: a Review

Objectives: To describe what is known of quality of life for colorectal cancer patients, to review what has been done in the Australian setting and to identify emerging directions for future research to address current gaps in knowledge. Method: A literature search (using Medline, PsychInfo, CINAHL and Sociological Abstracts) was conducted and 41 articles identified for review. Results: Three key areas relating to quality of life in colorectal cancer patients emerged from the literature review: the definition and measurement of quality of life; predictors of quality of life; and the relationship of quality of life to survival. Results of existing studies are inconsistent in relation to quality of life over time and its relationship to survival. Small sample sizes and methodological limitations make interpretation difficult. Conclusions: There is a need for large-scale, longitudinal, population-based studies describing the quality of life experienced by colorectal cancer patients and its determinants. Measurement and simultaneous adjustment for potential confounding factors would productively advance knowledge in this area, as would an analysis of the economic cost of morbidity to the community and an assessment of the cost effectiveness of proposed interventions. Implications: As the Australian population ages, the prevalence of colorectal cancer within the community will increase. This burden of disease presents as a priority area for public health research. An improved understanding of quality of life and its predictors will inform the development and design of supportive interventions for those affected by the disease.

A supervised versus home-based program effects on liver transplanted familial amyloidotic polyneuropathy patients: walking, fatigue and quality of life

Familial amyloidotic polyneuropathy is a systemic deposition of amyloidal fibre mainly on peripheral nervous system (but also in other systems like heart, gastrointestinal tract, kidneys, etc) and mainly produced in the liver. Purpose of this study: to evaluate the effects of a six months exercise training program(supervised or home-based) on walking capacity, fatigue and health related quality of life (HRQL) on Familial Amyloidotic Polyneuropathy patients submitted to a liver transplant.

Cut-off point for WHOQOL-bref as a measure of quality of life of older adults

OBJECTIVE To propose a cut-off for the World Health Organization Quality of Life-Bref (WHOQOL-bref) as a predictor of quality of life in older adults. METHODS Cross-sectional study with 391 older adults registered in the Northwest Health District in Belo Horizonte, MG, Southeastern Brazil, between October 8, 2010 and May 23, 2011. The older adults’ quality of life was measured using the WHOQOL-bref. The analysis was rationalized by outlining two extreme and simultaneous groups according to perceived quality of life and satisfaction with health (quality of life good/satisfactory – good or very good self-reported quality of life and being satisfied or very satisfied with health – G5; and poor/very poor quality of life – poor or very poor self-reported quality of life and feeling dissatisfied or very dissatisfied with health – G6). A Receiver-Operating Characteristic curve (ROC) was created to assess the diagnostic ability of different cut-off points of the WHOQOL-bref. RESULTS ROC curve analysis indicated a critical value 60 as the optimal cut-off point for assessing perceived quality of life and satisfaction with health. The area under the curve was 0.758, with a sensitivity of 76.8% and specificity of 63.8% for a cut-off of ≥ 60 for overall quality of life (G5) and sensitivity 95.0% and specificity of 54.4% for a cut-off of < 60 for overall quality of life (G6). CONCLUSIONS Diagnostic interpretation of the ROC curve revealed that cut-off < 60 for overall quality of life obtained excellent sensitivity and negative predictive value for tracking older adults with probable worse quality of life and dissatisfied with health.

Psychosocial Determinants of Quality of Life 6 Months After Transplantation: Longitudinal Prospective Study

OBJECTIVES: We sought to investigate the psychosocial determinants of quality of life at 6 months after transplantation. METHODS: A sample of liver transplant candidates (n = 60), composed of consecutive patients (25% with familial amyloid polyneuropathy [FAP]) attending outpatient clinics was assessed in the pretransplant period using the Neo Five Factor Inventory, Hospital Anxiety and depression Scale (HADS), Brief COPE, and SF-36, a quality-of-life, self-rating questionnaire. Six months after transplantation, these patients were assessed by means of the SF-36. RESULTS: Psychosocial predictors where found by means of multiple regression analysis. The physical component of quality of life at 6 months after transplantation was determined based upon coping strategies and physical quality of life in the pretransplant period (this model explained 32% of variance). The mental component at 6 months after transplantation was determined by depression in the pretransplant period and by clinical diagnoses of patients. Because FAP patients show a lower mental component of quality of life, this diagnosis explained 25% of the variance. CONCLUSIONS: Our findings suggested that coping strategies and depression measured in the pretransplant period are important determinants of quality of life at 6 months after liver transplantation.

Quality of life of patients with hepatitis C

INTRODUCTION: Self-report on the quality of life (QOL) is increasingly studied in the evaluation of various diseases, especially in chronic ones. However, there are few data in the literature focusing the QOL of patients living with chronic hepatitis C. The objective of this study was to evaluate the QOL in patients with hepatitis C assessed by the World Health Organization Quality of Life Assessment (WHOQOL)-bref scale. METHODS: One hundred and eight hepatitis C patients attending the Outpatient Healthcare Medical Specialties in Tubarão, State of Santa Catarina, Brazil, were contacted from May 2010 to February 2011. Patients answered the WHOQOL-bref scale and a questionnaire about their treatment and risk factors to hepatitis C virus (VHC) infection. RESULTS: Although most of patients with chronic hepatitis C considered their QoL good or very good (58.1%), 47 (44.8%) patients were poorly or very poorly satisfied with their health. About the WHOQOL answers, the environment domain had the highest score (25.15 + 5.77), while the lowest score was the social relationships domain (9.19 + 2.5). There was statistically significant association between household income and quality of life in all domains (p<0.001) and statistically significant association between education and the physical, psychological and social domains of quality of life (p<0.05). CONCLUSIONS: Based on the answers given in WHOQOL-bref, patients with chronic hepatitis C have a generally poor QOL, especially in social relationship domain. Household income and educational level were factors that interfered significantly with patients' QOL assessment.

Impact of oral health on health-related quality of life : A cross-sectional study

Background: Despite the consensus regarding the existence of a relationship between “impacts on oral health” and “health-related quality of life”, this relationship, considering the latent nature of these variables, is still poorly investigated. Thus, we performed this study in order to determine the magnitude of the impacts of oral health, demographic and symptom/clinical variables on the health-related quality of life in a Brazilian sample of dental patients. Methods: A total of 1,007 adult subjects enrolled in the School of Dentistry of São Paulo State University (UNESP) - Araraquara Campus for dentistry care between September/2012 and April/2013, participated. 72.4 % were female. The mean age was 45.7 (SD = 12.5) years. The Oral Health Impact Profile (OHIP-14) and the Short Form Health Survey (SF-36) were used. The demographic and symptom/clinical variables collected were gender, age, economic status, presence of pain and chronic disease. The impact of studied variables on health-related quality of life were evaluated with a structural equation model, considering the factor “Health” as the central construct. The fit of the model was first analyzed by the evaluation of the goodness of fit indices (χ 2 /df ≤ 2.0, CFI and TLI ≥ 0.90 and RMSEA < 0.10) and the evaluation of the variables’ impact over health-related quality of life was based on the statistical significance of causal paths (β), evaluated by z tests, for a significance level of 5 %. Results: We observed adequate fit of the model to the data (χ 2 /df = 3.55; CFI = 0.95; TLI = 0.94; RMSEA = 0.05). The impacts on oral health explained 28.0 % of the variability of the health-related quality of life construct, while the total variance explained of the model was 39.0 %. For the demographic and symptom/clinical variables, only age, presence of pain and chronic disease showed significant impacts (p < 0.05). Conclusion: The oral health, age, presence of pain and chronic disease of individuals had significant influence on health-related quality of life.