scholarly journals Quality of Life in Wilson’s Disease: A Systematic Literature Review

2021 ◽  
Vol 8 (2) ◽  
pp. 105-113
Keyword(s):  
Quality Of Life ◽  
Literature Review ◽  
Systematic Literature Review ◽  
Short Form ◽  
Survey Questionnaire ◽  
Short Form Health Survey ◽  
Form Health ◽  
Questionnaire Version ◽  
Short Form Health

**Background:** Wilson’s disease (WD) is a rare inherited genetic disorder characterized by the progressive accumulation of copper in the brain, liver, and other major organ systems. To date, there have been no comprehensive studies synthesizing evidence pertaining to the quality of life (QOL) in WD. **Objective:** We conducted a systematic literature review to identify and synthesize the evidence on QOL in patients with WD. **Methods:** To address this gap in the literature, we conducted a systematic literature review in MEDLINE and EMBASE to identify observational studies and clinical trials reporting QOL outcomes among people living with WD. **Results:** A total of 442 publications were identified, 41 publications were eligible for full-text screening, and 7 articles, representing 7 studies, met all inclusion criteria. QOL questionnaires used across studies included the 12-Item Short Form Health Survey Questionnaire (version 1) (SF-12) (n=2), the 36-Item Short Form Health Survey Questionnaire (version 1) (SF-36) (n=3), Global Assessment Scale (GAS) (n=1), and World Health Organization QOL brief questionnaire (WHO-QOL-BREF) (n=1). Overall, the pattern in QOL from most studies demonstrated a worse QOL in WD patients compared with the general population, a deterioration in QOL for patients presenting with neurologic symptoms, and more frequent psychiatric symptoms compared with the ones with hepatic symptoms. **Discussion:** Although our understanding of the underlying pathophysiology of WD has advanced, and novel therapeutics are on the horizon, our understanding of how WD affects overall QOL remains limited. Evidence from this review demonstrates the substantial heterogeneity in reporting outcomes pertaining to the QOL associated with WD. These differences may be attributable to the fact that QOL is not typically assessed and the lack of a standardized method for assessing QOL in WD. **Conclusion:** This review demonstrates a need for more up-to-date studies with larger sample sizes to further evaluate QOL in patients with WD. The study also demonstrates the need for a WD-specific instrument to measure the QOL in WD patients.

scholarly journals Validation of the Arabic version of the “12-item short-form health survey” (SF-12) in a sample of Lebanese adults

2021 ◽  
Vol 79 (1) ◽  
Author(s):  
Chadia Haddad ◽  
Hala Sacre ◽  
Sahar Obeid ◽  
Pascale Salameh ◽  
Souheil Hallit
Keyword(s):  
Quality Of Life ◽  
Principal Component Analysis ◽  
Psychometric Properties ◽  
Short Form ◽  
Principal Component ◽  
Arabic Version ◽  
Short Form Health Survey ◽  
Form Health ◽  
Short Form Health

Abstract Background In clinical practice, quality of life measures can be used alongside some types of assessment to give valuable information that can identify areas that influence an individual and help the clinician make the best healthcare choices. This study aimed to investigate the psychometric properties of the Arabic version of the 12-item short-form health survey (SF-12) in a sample of Lebanese adults. Methods This cross-sectional study performed between July and November 2019 recruited 269 participants. Cronbach’s alpha was used to assess the reliability of the SF-12 questionnaire, and a factor analysis using the principal component analysis was performed to confirm its construct validity. Results The mean score for the “physical component summary (PCS-12)” was 50.27 ± 8.94 (95 % CI: 49.18–51.36) and for the “Mental component summary (MCS-12)” was 44.95 ± 12.17 (95 % CI: 43.47–46.43). A satisfactory Cronbach’s alpha was found for the two components: MCS (α = 0.707) and PCS (α = 0.743). The principal component analysis converged over a two-factor solution (physical and mental), explaining a total variance of 55.75 %. Correlations between the SF-12 scales and single items were significant, showing a good construct validity. The “physical functioning”, “role physical”, “bodily pain”, and “general health” subscales were highly associated with “PCS-12”, while the “vitality”, “social functioning”, “role emotional”, and “mental health” subscales were more associated with MCS-12. Conclusions The Arabic version of the SF-12 is a reliable, easy-to-use, and valid tool to measure health-related quality of life in the general population. Future studies using a larger sample size and focusing on questionnaire psychometric properties are necessary to confirm our findings.

Evaluation of the quality of life of chronic renal patients in hemodialysis - a cross-current study / Avaliação da qualidade de vida de pacientes renais crônicos em hemodiálise – um estudo transversal

2019 ◽  
Vol 11 (1) ◽  
pp. 186-191
Author(s):  
Camila Zanesco ◽  
Erica De Brito Pitilin ◽  
Maíra Rossetto ◽  
Débora Tavares de Resende e Silva
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Short Form Health Survey ◽  
Medical Outcomes ◽  
Form Health ◽  
Sf 36 ◽  
Outcomes Study ◽  
Cross Current ◽  
Short Form Health

Objetivo: Caracterizar os pacientes com DRC em tratamento de hemodiálise (HD) de uma clínica do oeste catarinense, suas relações e variáveis sociodemográficas, e, a sua QV. Metodologia: Estudo transversal descritivo, com 116 pacientes com DRC em HD. Para coleta dos dados usou-se questionário sociodemográfico e o intrumento Medical Outcomes Study 36 – Item Short – Form Health Survey (SF-36). Resultados: Houve prevalência da população com idade igual ou > 60 anos, caucasianos (74,77%), do sexo masculino (54,31%), destaca-se a presença de profissões relacionadas a classe média ebaixa e quantidade de anos de estudo reduzidos. Em relação a comorbidades, prevaleceu a Hipertensão Arterial Sistêmica(38,79%). Quanto a QV as limitações por aspectos físicos tiveram menores médias (29,09) e limitações em atividades sociais maior média (73,71). Conclusão: A QV negativa têm repercussões pessoais, familiares e sociais devido ao impacto da doença na rotina de atividades de vida diária dos doentes renais.

scholarly journals Validação da Versão Portuguesa do Questionário EHP-30 (The Endometriosis Health Profile-30)

2015 ◽  
Vol 28 (3) ◽  
pp. 347 ◽  
Author(s):  
Cristina Nogueira-Silva ◽  
Patrício Costa ◽  
Carla Martins ◽  
Sónia Barata ◽  
Conceição Alho ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Internal Consistency ◽  
Short Form ◽  
Health Profile ◽  
Short Form Health Survey ◽  
The Core ◽  
Form Health ◽  
Short Form Health ◽  
Core Questionnaire

<strong>Introduction:</strong> Endometriosis Health Profile Questionnaire-30 is currently the most used questionnaire for quality of life measurement in women with endometriosis. The aim of this study is to evaluate the psychometric properties and to validate the Portuguese Endometriosis Health Profile Questionnaire-30 version.<br /><strong>Material and Methods:</strong> A sequential sample of 152 patients with endometriosis, followed in a Portugal reference center, were asked to complete a questionnaire on social and demographic features, the Portuguese version of the Endometriosis Health Profile Questionnaire-30 and of the Short Form Health Survey 36 Item – version 2. Appropriate statistical analysis was performed using descriptive statistics, factor analysis, internal consistency, item-total correlation and convergent validity.<br /><strong>Results:</strong> Factorial analysis confirmed the validity of the five-dimension structure of the Endometriosis Health Profile Questionnaire-30 core questionnaire, which explained 83.2% of the total variance. All item-total correlations presented acceptable results and high internal consistency, with Cronbach’s alpha ranging between 0.876 and 0.981 for the core questionnaire and between 0.863 and 0.951 for the modular questionnaire. Significant negative associations between similar scales of Endometriosis Health Profile Questionnaire-30 and Short Form Health Survey 36 Item – version 2 were demonstrated. Data completeness achieved was high for all dimensions. The emotional well-being scale in the core questionnaire and the infertility scale in the modular section had the highest median scores, and therefore the most negative impact on the quality of life of participating women.<br /><strong>Discussion:</strong> The test-retest reliability and responsiveness of the questionnaire should be evaluated in future studies.<br /><strong>Conclusion:</strong> The present study demonstrates that the Portuguese version of the Endometriosis Health Profile Questionnaire-30 is a valid, reliable and acceptable tool for evaluating the health-related quality of life of Portuguese women with endometriosis.

A comparison of quality of life in adolescents with epilepsy or asthma using the Short-Form Health Survey (SF-36)

2012 ◽  
Vol 101 (1-2) ◽  
pp. 157-165 ◽  
Author(s):  
Ji Wang ◽  
Yi Wang ◽  
Li Bo Wang ◽  
Hui Xu ◽  
Xiao-lei Zhang
Keyword(s):  
Quality Of Life ◽  
Health Survey ◽  
Short Form ◽  
Short Form Health Survey ◽  
Form Health ◽  
Sf 36 ◽  
Short Form Health

scholarly journals Qualidade de vida de pacientes com acidente vascular cerebral em reabilitação

2013 ◽  
Vol 26 (2) ◽  
pp. 205-212 ◽  
Author(s):  
Edja Solange Souza Rangel ◽  
Angélica Gonçalves Silva Belasco ◽  
Solange Diccini
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Outcome Study ◽  
Medical Outcome ◽  
Short Form Health Survey ◽  
Form Health ◽  
Quality Of Life Scale ◽  
Life Scale ◽  
Short Form Health

OBJETIVOS: Avaliar e correlacionar a qualidade de vida e depressão de pacientes após acidente vascular cerebral em reabilitação. MÉTODOS: Estudo transversal realizado em dois serviços de reabilitação, com pacientes de acidente vascular cerebral. As informações coletadas foram sociodemográficas, o Medical Outcome Study 36 - item short-form health survey, o Stroke Specific Quality of Life Scale, o Índice de Barthel e o Inventário de Depressão de Beck. RESULTADOS: A amostra foi constituída de 139 pacientes, idade média 59,4 anos e 59% eram homens. Houve comprometimento dos escores da qualidade de vida geral e específica. Segundo o Índice de Barthel 49,6% dos pacientes apresentavam dependência moderada a severa e 49,7% tinham sintomas depressivos, conforme Inventário de Depressão de Beck, não havendo correlação positiva entre estes dados e qualidade de vida geral e específica. CONCLUSÃO: A qualidade de vida geral e específica dos pacientes com acidente vascular cerebral, em reabilitação, apresentou domínios comprometidos.

Sign in / Sign up

Export Citation Format

Share Document