Health-related quality of life in Huntington's disease: which factors matter most?

The aim of this article was to determine which aspects of Huntington's disease (HD) are most important with regard to the health-related quality of life (HrQOL) of patients with this neurodegenerative disease. Seventy patients with HD participated in the study. Assessment comprised the Unified Huntington's Disease Rating Scale (UHDRS) motor, cognitive and functional capacity sections, and the Beck Depression inventory. Mental and physical HrQOL were assessed using summary scores of the SF-36. Multiple regression analyses showed that functional capacity and depressive mood were significantly associated with HrQOL, in that greater impairments in HrQOL were associated with higher levels of depressive mood and lower functional capacity. Motor symptoms and cognitive function were not found to be as closely linked with HrQOL. Therefore, it can be concluded that, depressive mood and greater functional incapacity are key factors in HrQOL for people with HD, and further longitudinal investigation will be useful to determine their utility as specific targets in intervention studies aimed at improving patient HrQOL, or whether other mediating variables. As these two factors had a similar association with the mental and physical summary scores of the SF-36, this generic HrQOL measure did not adequately capture and distinguish the true mental and physical health-related HrQOL in HD.

The bubbles or the boiling pot? An ecosystemic approach to culture, environment and quality of life

For the diagnosis and prognosis of the problems of quality of life, a multidisciplinary ecosystemic approach encompasses four dimensions of being-in-the-world, as donors and recipients: intimate, interactive, social and biophysical. Social, cultural and environmental vulnerabilities are understood and dealt with, in different circumstances of space and time, as the conjugated effect of all dimensions of being-in-the-world, as they induce the events (deficits and assets), cope with consequences (desired or undesired) and contribute for change. Instead of fragmented and reduced representations of reality, diagnosis and prognosis of cultural, educational, environmental and health problems considers the connections (assets) and ruptures (deficits) between the different dimensions, providing a planning model to develop and evaluate research, teaching programmes, public policies and field projects. The methodology is participatory, experiential and reflexive; heuristic-hermeneutic processes unveil cultural and epistemic paradigms that orient subject-object relationships; giving people the opportunity to reflect on their own realities, engage in new experiences and find new ways to live better in a better world. The proposal is a creative model for thought and practice, providing many opportunities for discussion, debate and development of holistic projects integrating different scientific domains (social sciences, psychology, education, philosophy, etc.).

Factors associated with health-related quality of life after successful kidney transplantation: a population-based study

Kidney transplantation improves the quality of life of end-stage renal disease patients. The quality of life benefits, however, pertain to patients on average, not to all transplant recipients. The aim of this study was to identify factors associated with health-related quality of life after kidney transplantation. Population-based study with a cross-sectional design was carried out and quality of life was assessed by SF-36 Health Survey Version 1. A multivariate linear regression model was constructed with sociodemographic, clinical and laboratory data as independent variables. Two hundred and seventy-two kidney recipients with a functioning graft were analyzed. Hypertension, diabetes, higher serum creatinine and lower hematocrit were independently and significantly associated with lower scores for the SF-36 oblique physical component summary (PCSc). The final regression model explained 11% of the PCSc variance. The scores of oblique mental component summary (MCSc) were worse for females, patients with a lower income, unemployed and patients with a higher serum creatinine. The regression model explained 9% of the MCSc variance. Among the studied variables, comorbidity and graft function were the main factors associated with the PCSc, and sociodemographic variables and graft function were the main determinants of MCSc. Despite comprehensive, the final regression models explained only a little part of the heath-related quality of life variance. Additional factors, such as personal, environmental and clinical ones might influence quality of life perceived by the patients after kidney transplantation.

QUALITY OF LIFE IN SYSTEMIC LUPUS ERYTHEMATOSUS PATIENTS IN NORTHEASTERN BRAZIL: IS HEALTH-RELATED QUALITY OF LIFE A PREDICTOR OF SURVIVAL FOR THESE PATIENTS?

Objective: To identify social, demographic and clinical characteristics that influence survival of patients with systemic lupus erythematosus (SLE). Methods: Sixty-three patients with a diagnosis of SLE were studied at our medical services in 1999 and then reviewed in 2005. We utilized a protocol to obtain demographic and clinical traits, activity and damage indices, and health-related quality of life via the SF-36. All statistical tests were performed using a significance level of 5%. Results: Out of the 63 patients examined in 1999, six died, four were lost for the follow-up and the previous protocol was applied to the remaining 53 patients. The six patients who died presented the worst recorded health-related quality of fife, in all aspects. The most important observed predictor of death was a mean lower score in the Role-Emotional Domain of the mental health component of the SF-36 (p<0.01). Conclusion: Health-related quality of life may be used as possible predictive factor of mortality among patients with SLE.

Between freedom and reclusion: Social support as a quality-of-life component in the family caregiver-dependent person binomial

This is a qualitative study which uses Grounded Theory as its methodological framework and Symbolic Interactionism as a theoretical base to understand the experience of family caregivers for Cerebrovascular Accident (CVA) patients with regard to social support during their rehabilitation process at home. The components (themes and categories) of the phenomenon assuming home care and specifically the themes assuming care with support and assuming care without support were inter-related for the purpose of comparison and analysis, in order to apprehend how the interaction between them occurred, It was observed that, in addition to the recovery of the patient's autonomy, social support is one of the intervenient components in the quality of life for the family caregiver-disabled person binomial, particularly with respect to the caregiver's freedom to resume his/her life plan.

Assessment of Quality of Life and Psychologic Aspects in Patients with Gestational Trophoblastic Disease

OBJECTIVE: To assess quality of life (QoL) and psychological aspects in patients with gestational trophoblastic disease (GTD).METHODS: This cross-sectional self-report study was conducted among 54 women. Validated questionnaires assessed QoL (WHO-QOL-bref), symptoms of depression (Beck Depression Inventory [BDI]) and anxiety (State-Trait Anxiety Inventory [STAI]).RESULTS: Most patients rated overall QoL as good (44.44%) anti were satisfied with their health status (42.59%). Mean QoL domain score was lowest for psychologic health (53.86 +/- 21.46) and highest for social relationships (65.74 +/- 22.41). BDI mean was 15.81 +/- 11.15, indicating dysphoria. STAI means were 46 +/- 6.46 for trait-anxiety and 43.72 +/- 4.23 for state-anxiety, both evidencing medium-high anxiety. Among employed patients, environment domain mean was the highest (p = 0.024). Presence of children resulted in lowest means for physical health (p = 0.041) and environment (p = 0.045). Patients desiring children showed significantly higher means for physical health (p = 0.004), psychological health (p = 0.021) and environment (p = 0.003). Chemotherapy had no significant influence on QoL (p > 0.05).CONCLUSION: This study evidenced psychological impact on GTD patients, suggesting specialized care centers should provide psychological interventions during treatment and follow-up of GTD patients, highlighting the importance of a multidisciplinary approach. (J Reprod Med 2009;54:239-244)

Health related quality of life among the elderly: a population-based study using SF-36 survey

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)

Clinical and quality-of-life outcomes after autologous fascial sling and tension-free vaginal tape: a prospective randomized trial

Purpose: Evaluate the impact autologous fascial sling (AFS) and tension-free vaginal tape (TVT) procedures on quality-of-life in incontinent women. Materials and Methods: Forty-one women were randomly distributed into two groups. Group G1 (n = 21), underwent AFS and group G2 (n = 20) TVT implant. The clinical follow up was performed at 1, 6, 12 and 36 months. Results: TVT operative time was significantly shorter than AFS. Cure rates were 71% at 1 month, 57% at 6 and 12 months in G1. In G2, cure rates were 75% at 1 month, 70% at 6 months and 65% at 12 months; there was no significant difference between groups. As regards the satisfaction rate, there was no statistical difference between groups. Analysis of quality of life at 36 months revealed that there was no significant difference between groups. Conclusion: Similar results between AFS and TVT, except for operative time were shorter in TVT.

Prosthesis Auricular With Osseointegrated Implants and Quality of Life

Implants in craniofacial reconstructions improve prostheses retention and stability, comfort, and safety for the patient. According to biomechanical principles, the treatment success regarding osseointegration maintenance depends on an adequate surgery technique associated to a retention system that provides favorable tension distribution to implants. Implants in the mastoid area are a very important aid for retention of auricular prostheses. Color stability of resin and silicone is an important factor for longevity of auricular prostheses, and the high degree of satisfaction of patients with head and neck defects receiving epithesial reconstruction in the maxillofacial region is demonstrated.

Quality of life and stimulus perception in patients' rehabilitated with complete denture

The objective of this study was to evaluate and correlate quality of life (QoL), and stimulus perception of complete denture users, before and after the insertion of new prostheses. We selected 60 patients using bimaxillary complete conventional dentures who needed to replace their prostheses. During anamnesis, we collected demographic data and applied the Oral Health Impact Profile for Edentulous Patients (OHIP-EDENT) questionnaire and stimulus perception questionnaire (PERCEPTION). Before installation of new prostheses, the patients responded to OHIP-EDENT questionnaire, and on the day of installation, they responded to PERCEPTION questionnaire. At the patients 3-month follow-up, we re-administered the OHIP-EDENT and PERCEPTION questionnaires. The Wilcoxon and MacNemar tests were used to compare patient responses between the time points analysed. Most of the OHIP-EDENT items showed a highly significant impact of the new prostheses on oral health (P = 0.003). The PERCEPTION questionnaire data indicated that the patients experienced significant improvements (P < 0.05) in terms of their sensations with the new prostheses. Cross-lagged data analysis did not show any causality between the OHIP-EDENT and PERCEPTION questionnaires (ZPF test, P = 0.772). We concluded that the treatment was effective with respect to the patients QoL and their adaptation to the new prostheses.