General and oral health-related quality of life among caregivers of Parkinson's disease patients

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

A new short and simple health-related quality of life measurement for paediatric rheumatic diseases: initial validation in juvenile idiopathic arthritis

Objective. To develop and validate a new short and simple measure of health-related quality of life (HRQL) in children with juvenile idiopathic arthritis (JIA).Methods. The Paediatric Rheumatology Quality of Life Scale (PRQL) is a 10-item questionnaire that explores HRQL in two domains: physical health (PhH) and psychosocial health (PsH). Validation of the parent proxy report and child self-report versions of the instrument was accomplished by evaluating 472 JIA patients and similar to 800 healthy children. Validation analyses included assessment of feasibility, face and content validity; construct and discriminative ability; internal structure and consistency; test-retest reliability; responsiveness to clinical change; and minimal clinically important difference.Results. The PRQL was found to be feasible and to possess both face and content validity. The PRQL score correlated in the predicted range with most of the other JIA outcome measures, thereby demonstrating good construct validity, and discriminated well between different levels of disease severity. Assessment of internal structure (factor analysis) revealed that the PhH and PsH subscales identify two unambiguously separated domains. The internal consistency (Cronbach's alpha) was 0.86. The intraclass correlation coefficient for test-retest reliability was 0.91. The PRQL revealed fair responsiveness, with a standardized response mean of 0.67 in improved patients. Overall, the PRQL appeared to be more able to capture physical HRQL than psychosocial HRQL.Conclusion. The PRQL was found to possess good measurement properties and is, therefore, a valid instrument for the assessment of HRQL in children with JIA. This tool is primarily proposed for use in standard clinical care.

Comparing the efficacy of mandibular implant-retained overdentures and conventional dentures among elderly edentulous patients: satisfaction and quality of life

Objectives: the aim of this study was to compare the satisfaction and the quality of life in an elderly population using either mandibular conventional dentures or implant-retained overdentures.Materials and methods: A total of 34 patients were divided into two groups: group I-complete dentures users; group II - users of upper complete dentures opposed by implant-retained overdentures. The subjects were submitted to a questionnaire based on Oral Health impact Profile and oral health related quality of life to evaluate their satisfaction levels and quality of life with their prostheses. Data were evaluated using a non-parametric statistical analysis (Fischer test) with significant difference at alpha = 0.05.Results: There were no significant differences between the groups in relation to comfort, aesthetics, chewing ability, overall satisfaction, pain, functional, phonetic, social, and psychological limitations (p > 0.05). Comparing the stability of mandibular dentures, group II presented the better results (p < 0.05).Conclusion: Although the stability of the mandibular implant-retained overdenture was enhanced compared to a conventional denture, the quality of life and satisfaction levels were similar for both the groups.

Perceived quality of life and physical activity in Brazilian older adults

The purpose of this study was to investigate the association between self-perceived quality of life and physical activity in Brazilian older adults. We investigated 199 individuals (117 men and 82 women) aged between 60 to 70 years old, employees of a public university. Physical activity was estimated by the short version of the International Physical Activity Questionnaire (IPAQ). Self-perceived quality of life was assessed using the World Health Organization Quality of Life (WHOQOL-Bref) questionnaire composed of four domains: physical, psychological, social relationship and environment. There was no difference in self-perceived quality of life between men and women. In contrast, quality of life was associated with physical activity even after adjustment for gender, schooling and income. The physical domain presented the strongest association with physical inactivity (Odds Ratio = 2.70, 95% CI 1.87-3.52). Only the environment domain evaluated by WHOQOL-Bref was not associated to physical inactivity. Among the older, improved self-perceived quality of life is positively associated to physical activity. © FTCD/FIP-MOC.

Sleep, stress, neurocognitive profile and healthrelated quality of life in adolescents with idiopathic musculoskeletal pain

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

Cardiovascular risk and mortality in end-stage renal disease patients undergoing dialysis: sleep study, pulmonary function, respiratory mechanics, upper airway collapsibility, autonomic nervous activity, depression, anxiety, stress and quality of life: a prospective, double blind, randomized controlled clinical trial

Background: Chronic kidney disease (CKD) is one of the most serious public health problems. The increasing prevalence of CKD in developed and developing countries has led to a global epidemic. The hypothesis proposed is that patients undergoing dialysis would experience a marked negative influence on physiological variables of sleep and autonomic nervous system activity, compromising quality of life.Methods/Design: A prospective, consecutive, double blind, randomized controlled clinical trial is proposed to address the effect of dialysis on sleep, pulmonary function, respiratory mechanics, upper airway collapsibility, autonomic nervous activity, depression, anxiety, stress and quality of life in patients with CKD. The measurement protocol will include body weight (kg); height (cm); body mass index calculated as weight/height(2); circumferences (cm) of the neck, waist, and hip; heart and respiratory rates; blood pressures; Mallampati index; tonsil index; heart rate variability; maximum ventilatory pressures; negative expiratory pressure test, and polysomnography (sleep study), as well as the administration of specific questionnaires addressing sleep apnea, excessive daytime sleepiness, depression, anxiety, stress, and quality of life.Discussion: CKD is a major public health problem worldwide, and its incidence has increased in part by the increased life expectancy and increasing number of cases of diabetes mellitus and hypertension. Sleep disorders are common in patients with renal insufficiency. Our hypothesis is that the weather weight gain due to volume overload observed during interdialytic period will influence the degree of collapsibility of the upper airway due to narrowing and predispose to upper airway occlusion during sleep, and to investigate the negative influences of haemodialysis in the physiological variables of sleep, and autonomic nervous system, and respiratory mechanics and thereby compromise the quality of life of patients.

Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration

Background: Rheumatic diseases in children are associated with significant morbidity and poor health-related quality of life (HRQOL). There is no health-related quality of life (HRQOL) scale available specifically for children with less common rheumatic diseases. These diseases share several features with systemic lupus erythematosus (SLE) such as their chronic episodic nature, multi-systemic involvement, and the need for immunosuppressive medications. HRQOL scale developed for pediatric SLE will likely be applicable to children with systemic inflammatory diseases.Findings: We adapted Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY (c)) to Simple Measure of Impact of Illness in Youngsters (SMILY (c)-Illness) and had it reviewed by pediatric rheumatologists for its appropriateness and cultural suitability. We tested SMILY (c)-Illness in patients with inflammatory rheumatic diseases and then translated it into 28 languages. Nineteen children (79% female, n= 15) and 17 parents participated. The mean age was 12 +/- 4 years, with median disease duration of 21 months (1-172 months). We translated SMILY (c)-Illness into the following 28 languages: Danish, Dutch, French (France), English (UK), German (Germany), German (Austria), German (Switzerland), Hebrew, Italian, Portuguese (Brazil), Slovene, Spanish (USA and Puerto Rico), Spanish (Spain), Spanish (Argentina), Spanish (Mexico), Spanish (Venezuela), Turkish, Afrikaans, Arabic (Saudi Arabia), Arabic (Egypt), Czech, Greek, Hindi, Hungarian, Japanese, Romanian, Serbian and Xhosa.Conclusion: SMILY (c)-Illness is a brief, easy to administer and score HRQOL scale for children with systemic rheumatic diseases. It is suitable for use across different age groups and literacy levels. SMILY (c)-Illness with its available translations may be used as useful adjuncts to clinical practice and research.

Alcohol and Quality of Life Among Social Groups for the Elderly in Sao Jose dos Campos, Brazil

This study aims to investigate alcohol consumption within social groups for the elderly in So Jos, dos Campos-Brazil, and to check for a correlation between alcohol consumption and quality of life. A sample of 500 individuals participating on social groups for the elderly were interviewed by using the Alcohol Use Disorders Identification Test (AUDIT) to verify alcohol consumption; the Medical Outcomes Study 36 Item Short Form (SF-36), for evaluating quality of life; and the Oral Health Impact Profile short form (OHIP-14), for evaluating oral health-related quality of life. The average alcohol consumption was very low (1.48), being higher in men (2.23) than women (1.09). The SF-36 average score for the domain of physical function was 70.5; for role-physical function 64.9; for bodily pain,68.3; for general health 73.8; for vitality,72.4; for social function 82.8; for role-emotional function 72.3 and for mental health 75.0. The OHIP-14 average score was 3.87. AUDIT did not correlate with SF-36 domains, or with OHIP-14. However, there was a negative correlation between OHIP 14 and all SF-36 domains. This elderly sample has a very low consumption of alcohol, and no correlation was found between alcohol consumption and oral and medical quality of life.

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 behavior and quality of life among the elderly: a population-based study

OBJETIVO: Analisar a associação de comportamentos saudáveis com a qualidade de vida relacionada à saúde em idosos. MÉTODOS: Estudo transversal de base populacional que envolveu 1.958 idosos residentes em quatro áreas do estado de São Paulo, em 2001/2002. A qualidade de vida foi aferida com o uso do instrumento Medical Outcomes Study SF-36-Item Short Form Health Survey. As oito escalas e os dois componentes do instrumento constituíram as variáveis dependentes e as independentes foram atividade física, freqüência semanal de ingestão de bebida alcoólica e hábito de fumar. Modelos de regressão linear múltipla foram usados para controlar o efeito de sexo, idade, escolaridade, trabalho, área de residência e número de doenças crônicas. RESULTADOS: Atividade física foi positivamente associada com as oito escalas do SF-36. As maiores associações foram encontradas em aspectos físicos (β = 11,9), capacidade funcional (β = 11,3) e no componente físico. Idosos que ingeriam bebida alcoólica pelo menos uma vez por semana apresentaram melhor qualidade de vida do que os que não ingeriam. Comparados com os que nunca fumaram, os fumantes tiveram pior qualidade de vida no componente mental (β = -2,4). CONCLUSÕES: Os resultados apresentam que praticar atividade física, consumir bebida alcoólica moderadamente e não fumar são fatores positivamente associados a uma melhor qualidade de vida em idosos.

Relationship between disease severity and quality of life in patients with chronic obstructive pulmonary disease

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

Living kidney donors - a prospective study of quality of life before and after kidney donation

Although the safety of living kidney donation has been well established, prospective studies examining the physical and psychosocial aspects of the donor's quality of life are still scarce. Thus, the purpose of this prospective work was to assess the quality of life of 50 consecutive donors before and after kidney transplantation. All donors were asked to respond to both a donor questionnaire and the short-form 36-item health survey (SF-36). Interviews were individually conducted before, three months after, and over one yr after transplantation. Donation was considered a positive experience by all patients and had no impact on any physical or psychosocial aspect of the donor's life. Improved self-esteem and better quality of life after donation were reported in 52% of the cases. All donors would donate again and encouraged donation. SF-36 data indicated improvement in post-donation mental and physical scores among living donors closely related to recipient. Overall, most donors had a positive experience, felt no changes in quality of life, experienced enhanced self-esteem, would donate again, and recommended donation. © 2012 John Wiley & Sons A/S.

Pain and quality of life in patients undergoing radiotherapy for spinal metastatic disease treatment

Background: Radiotherapy is an important tool in the control of pain in patients with spinal metastatic disease. We aimed to evaluate pain and of quality of life of patients with spinal metastatic disease undergoing radiotherapy with supportive treatment. Methods. The study enrolled 30 patients. From January 2008 to January 2010, patients selection included those treated with a 20Gy tumour dose in five fractions. Patients completed the visual analogue scale for pain assessment and the SF-36 questionnaire for quality of life assessment. Results: The most frequent primary sites were breast, multiple myeloma, prostate and lymphoma. It was found that 14 spinal metastatic disease patients (46.66%) had restricted involvement of three or fewer vertebrae, while 16 patients (53.33%) had cases involving more than three vertebrae. The data from the visual analogue scale evaluation of pain showed that the average initial score was 5.7 points, the value 30days after the end of radiotherapy was 4.60 points and the average value 6months after treatment was 4.25 points. Notably, this final value was 25.43% lower than the value from the initial analysis. With regard to the quality of life evaluation, only the values for the functional capability and social aspects categories of the questionnaire showed significant improvement. Conclusion: Radiotherapy with supportive treatment appears to be an important tool for the treatment of pain in patients with spinal metastatic disease. © 2013 Valesin Filho et al; licensee BioMed Central Ltd.