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

Purpose: To evaluate the effects of a six months exercise training program on walking capacity, fatigue and health related quality of life (HRQL). Relevance: Familial amyloidotic polyneuropathy disease (FAP) is an autossomic neurodegenerative disease, related with systemic deposition of amyloidal fibre mainly on peripheral nervous system and mainly produced in the liver. FAP often results in severe functional limitations. Liver transplantation is used as the only therapy so far, that stop the progression of some aspects of this disease. Transplantation requires aggressive medication which impairs muscle metabolism and associated to surgery process and previous possible functional impairments, could lead to serious deconditioning. Reports of fatigue are common feature in transplanted patients. The effect of supervised or home-based exercise training programs in FAP patients after a liver transplant (FAPTX) is currently unknown.

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.

Health related quality of life in patients with refractory chronic heart failure undergoing cardiac resynchronization: type of therapeutic response

The benefits of cardiac resynchronization therapy (CRT) in the health-related quality of life (HRQL) are largely demonstrated in selected patients with severe congestive heart failure (CHF). However, the differences between responders and non-responders, with regard to the effect of CRT in the various dimensions that constitute HRQL are still a matter of discussion. Objective: To evaluate the impact of CRT on the HRQL of patients with CHF refractory to optimal pharmacological therapy, within 6 months after CRT. Methods: 43 patients, submitted to successful implantation of CRT, were evaluated in hospital just before intervention and in the outpatient clinic within 6 months after CRT. HRQL was analyzed based on the Kansas City Cardiomyopathy Questionnaire (KCCQ). Patients were classified as super-responders (ejection fraction of left ventricle - LVEF - ≥45% post-CRT), n=15, responders (sustained improvement in functional class and LVEF increased by 15%), n=19, and non-responders (no clinical or LVEF improvement), n=9. Results: In the group of super-responders, CRT was associated with an improvement in HRQL for the various fields and sums assessed (ρ<0.05); in responders, CRT has been associated with an improvement of HRQL in the various fields and sums, except in the self-efficacy dimension (ρ<0.05); in non-responders, CRT was not associated with improvement of HRQL. Conclusion: In a population with severe CHF undergoing CRT, the patients with clinical and echocardiographic positive response, obtained a favorable impact in all dimensions of HRQL, while the group without response to CRT showed no improvement. These data reinforces the importance of HRQL as a multidimensional tool for assessment of benefits in clinical practice.

How important is personality in neurological patient' quality of life perception?

In the last decades, the value of research on neurological patients’ quality of life (QOL) has become unquestionable. In this context, most studies focus on the relationship between patients’ QOL and their sociodemographic and/or clinical and/or modifiable psychosocial characteristics. They give us information regarding the sociodemographic and clinical profile most prone to low QOL reports and also on ways to improve patients’ QOL (e.g., targeting their selfesteem). Nevertheless, little is known about the role nonmodifiable psychosocial variables can have on patients’ QOL perception. Consequently, the aim of the present study is to explore the relationship between QOL and personality in neurological patients.

The importance of quality of life in patients with multiple sclerosis: do they need auxiliary walking devices?

Objective: To describe the importance of training multiple sclerosis (MS) patients with auxiliary walking devices (walking stick, crutch, or wheelchair) in a way that achieves a better quality of life (QOL). Design: Exploratory and descriptive. Setting: General hospital in Portugal.

Evaluating the quality of life in patients with refractory chronic heart failure undergoing cardiac resynchronization regarding the type of therapeutic response

The benefits of cardiac resynchronization therapy (CRT) in the quality of life have been largely demonstrated in selected patients with severe congestive heart failure (CHF). However, the differences between responders and non-responders, with regard to the effect of CRT in the various dimensions of quality of life is still a matter of discussion. Objective: to evaluate the impact of CRT on the quality of life of patients with CHF refractory to optimal pharmacological therapy, within 6 months after CRT.

Relation of happiness, hope and affection with quality of life in patients with heart failure

Introduction: Meeting the actual role of positive psychology, begins to be recognized the relation of positive variables with health. Objective: To know the relation of happiness, hope and affection with quality of life in individuals with heart failure. Population and Methodology: 128 individuals with heart failure, 98 men and 30 women, 61.9±12,1 years of age, 6,6±3,9 years in school and 74,2% retired because of this disease. 56,3% were in Class III of New York Heart Association, with poor left ventricular ejection fraction (25,3±6,2%). The clinical history was of 9,4±8,5 years for this heart disease and had at least one hospitalization due to heart failure with 51,6% having ischemic heart disease.

Happiness, hope and affection as predictors of quality of life and functionality of individuals with heart failure at 3 month follow up

Introduction: Meeting the actual role of positive psychology, begins to be recognized the contribution of positive variables in health outcomes. Objective: To know the contribution of happiness, hope and affection individually and as a whole in the quality of life and functionality of individuals with heart failure. Population and Methodology: 128 individuals with heart failure, 98 men and 30 women, 61.9±12,1 years of age, 6,6±3,9 years of school and 74,2% retired because of this disease. 56,3% were in Class III of New York Heart Association, with poor left ventricular ejection fraction (25,3±6,2%). The clinical history was of 9,4±8,5 years for this heart disease and had at least one hospitalization due to heart failure with 51,6% having ischemic heart disease.

Quality of life in dilated cardiomyopathy with refractory chronic heart failure undergoing devices implantation

Heart failure is the final stage of most of cardiac diseases. It is a complex syndrome in which the patients should have the following features: symptoms of heart failure, typically shortness of breath at rest or during exertion, and/or fatigue; signs of fluid retention such as pulmonary congestion or ankle swelling; and objective evidence of an abnormality of the structure or function of the heart at rest. This progressive syndrome as a high incidence and prevalence and poor prognosis: four-year mortality is around 50% with 40% of the patients admitted to hospital dying or readmitted within a year. With ageing, many patients will develop chronic heart failure, which, because of its symptoms, patient’s awareness of their risk of dying, and the effects of therapy, together with frequent hospitalizations, has considerable impact on patient’s health-related quality of life.

Implication of an intervention program for the promotion of physical activity in the quality of life of people with multiple sclerosis

The aims of this study is to examine the interest for quality of life of an implementation of program physical activity, with patients of multiple sclerosis.

Nutritional status influences generic and disease-specific quality of life measures in haemodialysis patients

Background: Poor nutritional status and worse health-related quality of life (QoL) have been reported in haemodialysis (HD) patients. The utilization of generic and disease specific QoL questionnaires in the same population may provide a better understanding of the significance of nutrition in QoL dimensions. Objective: To assess nutritional status by easy to use parameters and to evaluate the potential relationship with QoL measured by generic and disease specific questionnaires. Methods: Nutritional status was assessed by subjective global assessment adapted to renal patients (SGA), body mass index (BMI), nutritional intake and appetite. QoL was assessed by the generic EuroQoL and disease specific Kidney Disease Quality of Life-Short Form (KDQoL-SF) questionnaires. Results: The study comprised 130 patients of both genders, mean age 62.7 ± 14.7 years. The prevalence of undernutrition ranged from 3.1% by BMI ≤ 18.5 kg/m2 to 75.4% for patients below energy and protein intake recommendations. With the exception of BMI classification, undernourished patients had worse scores in nearly all QoL dimensions (EuroQoL and KDQoL-SF), a pattern which was dominantly maintained when adjusted for demographics and disease-related variables. Overweight/obese patients (BMI ≥ 25) also had worse scores in some QoL dimensions, but after adjustment the pattern was maintained only in the symptoms and problems dimension of KDQoL-SF (p = 0.011). Conclusion: Our study reveals that even in mildly undernourished HD patients, nutritional status has a significant impact in several QoL dimensions. The questionnaires used provided different, almost complementary perspectives, yet for daily practice EuroQoL is simpler. Assuring a good nutritional status, may positively influence QoL.

An application of structural equation modeling of test dispositional optimism as mediator or moderator in quality of life in patients with chronic disease

The aim of the present study was to test a hypothetical model to examine if dispositional optimism exerts a moderating or a mediating effect between personality traits and quality of life, in Portuguese patients with chronic diseases. A sample of 540 patients was recruited from central hospitals in various districts of Portugal. All patients completed self-reported questionnaires assessing socio-demographic and clinical variables, personality, dispositional optimism, and quality of life. Structural equation modeling (SEM) was used to analyze the moderating and mediating effects. Results suggest that dispositional optimism exerts a mediator rather than a moderator role between personality traits and quality of life, suggesting that “the expectation that good things will happen” contributes to a better general well-being and better mental functioning.

Psychosocial factors as predictors of quality of life in chronic portuguese patients

Background - Chronic illnesses are diseases of long duration and generally of slow progression. They cause significant quality of life impairment. The aim of this study was to analyse psychosocial predictors of quality of life and of subjective well-being in chronic Portuguese patients. Methods - Chronic disease patients (n = 774) were recruited from central Portuguese Hospitals. Participants completed self-reported questionnaires assessing socio-demographic, clinical, psychosocial and outcome variables: quality of life (HRQL) and subjective well-being (SWB). MANCOVA analyses were used to test psychosocial factors as determinants of HRQL and SWB. Results - After controlling for socio-demographic and clinical variables, results showed that dispositional optimism, positive affect, spirituality, social support and treatment adherence are significant predictors of HRQL and SWB. Similar predictors of quality of life, such as positive affect, treatment adherence and spirituality, were found for subgroups of disease classified by medical condition. Conclusions - The work identifies psychosocial factors associated with quality of life. The predictors for the entire group of different chronic diseases are similar to the ones found in different chronic disease subgroups: positive affect, social support, treatment adherence and spirituality. Patients with more positive affect, additional social support, an adequate treatment adherence and a feel-good spirituality, felt better with the disease conditions and consequently had a better quality of life. This study contributes to understanding and improving the processes associated with quality of life, which is relevant for health care providers and chronic diseases support.

Happiness, hope, and affection as predictors of quality of life and functionality of individuals with heart failure at three-month follow-up

The scientific evidence supporting the management of the chronically ill in a positive psychological perspective in opposition to traditional pathological approach is scarce. This study examines issues associated with recovery of health status in heart failure, in particular hope, affection, and happiness. We use a longitudinal study of 128 symptomatic patients who after medical intervention reported improved quality of life and function at 3-month follow-up. We evaluated the contribution of happiness, hope and affection, individually and as a whole, in the quality of life and functionality of individuals with heart failure. Happiness (Subjective Happiness Scale), Hope (HOPE Scale), and affection (PANAS (positive and negative affect schedule)) were determined before medical intervention. Individually, we found that happiness is correlated with the quality of life and functionality, hope to self-efficacy dimension of the quality of life scale, positive affect to functionality and negative affect with symptoms dimension, quality of life dimension, and overall sum of the quality of life scale. Overall, we found that happiness has a unique contribution to the quality of life, except in self-efficacy dimension where hope takes this contribution and positive affect has a unique contribution to the functionality in this short-term follow-up. The results highlight the importance of positive variables to health outcomes for people with heart failure and should be considered in intervention programs for this syndrome.

Optimism on quality of life in Portuguese chronic patients: moderator/mediator?

Objetivo: o otimismo tem sido demonstrado como uma variável importante no ajustamento da qualidade de vida de pessoas com doenças crônicas. O estudo tem como objetivo verificar se o otimismo exerce um efeito moderador ou mediador entre os traços de personalidade e a qualidade de vida, em portugueses com doenças crônicas. Métodos: os modelos de regressão linear múltipla foram usados para avaliar o efeito de moderação e mediação do otimismo na qualidade de vida. A amostra, constituída por 729 doentes, recrutados nos principais hospitais de Portugal responderam a questionários de autorresposta avaliando questões sócio-demográficas e clínicas, personalidade, otimismo disposicional, qualidade de vida e bem-estar subjetivo. Resultados: os resultados encontrados mostraram que o otimismo disposicional não exerce um papel moderador entre os traços de personalidade e a qualidade de vida. Controlando por idade, sexo, nível de escolaridade e percepção da severidade da doença, o efeito dos traços de personalidade na qualidade de vida e no bem-estar subjetivo foi mediado pelo otimismo (parcial e total), expecto para as associações, neuroticismo/abertura à experiência e à saúde física. Conclusão: o otimismo disposicional exerce apenas um papel mediador entre os traços de personalidade e qualidade de vida, em pessoas com doenças crônicas, sugerindo que 'a expectativa de que coisas boas vão acontecer' contribui para uma melhor qualidade de vida e melhor bem-estar subjetivo.