The effects of Gilles de la Tourette syndrome and other chronic tic disorders on quality of life across the lifespan:a systematic review

Gilles de la Tourette syndrome (GTS) and other chronic tic disorders are neurodevelopmental conditions characterized by the presence of tics and associated behavioral problems. Whilst converging evidence indicates that these conditions can affect patients' quality of life (QoL), the extent of this impairment across the lifespan is not well understood. We conducted a systematic literature review of published QoL studies in GTS and other chronic tic disorders to comprehensively assess the effects of these conditions on QoL in different age groups. We found that QoL can be perceived differently by child and adult patients, especially with regard to the reciprocal contributions of tics and behavioral problems to the different domains of QoL. Specifically, QoL profiles in children often reflect the impact of co-morbid attention-deficit and hyperactivity symptoms, which tend to improve with age, whereas adults' perception of QoL seems to be more strongly affected by the presence of depression and anxiety. Management strategies should take into account differences in age-related QoL needs between children and adults with GTS or other chronic tic disorders.

Evaluation of low vision services on the quality of life of individuals with age-related macular degeneration

Background: Age-related macular degeneration (ARMD) is a major cause of irreversible visual loss in the elderly and a significant threat to their quality of life. Although low vision services often improve the functional outcomes of individuals with macular disease, it remains unclear whether or not they have any impact on quality of life. The principal aim of this study was to determine the effect of a hospital-based low vision clinic on the quality of life of individuals with ARMD. Methods: Forty patients with ARMD attended the low vision clinic at Milton Keynes University Hospital. Quality of life was measured with the vision-specific Low Vision Quality of Life (LVQOL) questionnaire and the general health EuroQol (EQ-5D-5L) questionnaire. Measures were completed at baseline (time zero, T0), and at three- (T3) and six-month (T6) follow-up visits. Results: The near visual acuity of individuals attending the low vision clinic for the first time improved significantly between visits T0 and T3 (p=0.005), reflecting the practiced use of their newly-dispensed low vision aids. As expected, there was no significant change in near acuity over this time period for existing patients. For both new and existing patients, a significant increase in LVQOL score was evident between visits T0 and T3, with a further significant improvement between T3 and T6. Similarly, there was a significant decrease in EQ-5D-5L questionnaire scores between visits T0 and T6. Conclusions: The higher LVQOL scores obtained at the end of the study period (T6) provide evidence that low vision services at Milton Keynes University Hospital served to improve patient quality of life. The reduction in EQ-5D-5L scores over the same time period suggests that low vision services also provide for an improvement in general health-related quality of life. Impact: The findings support the cause of low vision services to improve not only the vision and functional outcomes of individuals with macular disease but also their quality of life. Moreover, the findings suggest that a more efficient allocation of resources at low vision clinics may be possible through the standardisation of patient follow-up frequency.

Impact on quality of life of removable partial denture wearers after 2 years of use

The use of clinical indicators of satisfaction (OHIP) can be applied to evaluate the impact of denture use on patient quality of life, since dental problems and disorders interfere in the normal life of individuals. Aim: This study aimed at evaluating the satisfaction level of patients rehabilitated with removable partial dentures (RPD) after 2 years of use. Methods: An observational study was carried out on 28 patients with a mean age of 45 years, treated with RPD at the Department of Dentistry of the Federal University of Rio Grande do Norte in 2005. Patients signed informed consent and answered the Oral Health Impact Profile (OHIP) questionnaire on three occasions: prior to rehabilitation and at 3 months and 2 years of denture use. Repeated-measures ANOVA was applied for data analysis. Results: A difference was found between data obtained at the moment of fitting and three months after denture use (p<0.001). However, no variation was observed when comparing data from 3 months and 2 years of use (p>0.05). The variables of gender and age did not interfere in the result (p>0.05). Conclusions: The degree of patient satisfaction after RPD installation was significant at the moment of fitting and 3 months after denture use, but no significant difference was found between 3 months and 2 years of denture use.

Impact on quality of life of removable partial denture wearers after 2 years of use

The use of clinical indicators of satisfaction (OHIP) can be applied to evaluate the impact of denture use on patient quality of life, since dental problems and disorders interfere in the normal life of individuals. Aim: This study aimed at evaluating the satisfaction level of patients rehabilitated with removable partial dentures (RPD) after 2 years of use. Methods: An observational study was carried out on 28 patients with a mean age of 45 years, treated with RPD at the Department of Dentistry of the Federal University of Rio Grande do Norte in 2005. Patients signed informed consent and answered the Oral Health Impact Profile (OHIP) questionnaire on three occasions: prior to rehabilitation and at 3 months and 2 years of denture use. Repeated-measures ANOVA was applied for data analysis. Results: A difference was found between data obtained at the moment of fitting and three months after denture use (p<0.001). However, no variation was observed when comparing data from 3 months and 2 years of use (p>0.05). The variables of gender and age did not interfere in the result (p>0.05). Conclusions: The degree of patient satisfaction after RPD installation was significant at the moment of fitting and 3 months after denture use, but no significant difference was found between 3 months and 2 years of denture use.

The Quality of Society and Life Satisfaction in China

Peer reviewed

The Quality of Society and Life Satisfaction in China

Peer reviewed

Patient-reported quality-of-life analysis of radium-223 dichloride from the phase III ALSYMPCA study

BACKGROUND: Radium-223 dichloride (radium-223), a first-in-class α-emitting radiopharmaceutical, is recommended in both pre- and post-docetaxel settings in patients with castration-resistant prostate cancer (CRPC) and symptomatic bone metastases based on overall survival benefit demonstrated in the phase III ALSYMPCA study. ALSYMPCA included prospective measurements of health-related quality of life (QOL) using two validated instruments: the general EuroQoL 5D (EQ-5D) and the disease-specific Functional Assessment of Cancer Therapy-Prostate (FACT-P).

PATIENTS AND METHODS: Analyses were conducted to determine treatment effects of radium-223 plus standard of care (SOC) versus placebo plus SOC on QOL using FACT-P and EQ-5D. Outcomes assessed were percentage of patients experiencing improvement, percentage of patients experiencing worsening, and mean QOL scores during the study.

RESULTS: Analyses were carried out on the intent-to-treat population of patients randomized to receive radium-223 (n = 614) or placebo (n = 307). The mean baseline EQ-5D utility and FACT-P total scores were similar between treatment groups. A significantly higher percentage of patients receiving radium-223 experienced meaningful improvement in EQ-5D utility score on treatment versus placebo {29.2% versus 18.5%, respectively; P = 0.004; odds ratio (OR) = 1.82 [95% confidence interval (CI) 1.21-2.74]}. Findings were similar for FACT-P total score [24.6% versus 16.1%, respectively; P = 0.020; OR = 1.70 (95% CI 1.08-2.65)]. A lower percentage of patients receiving radium-223 experienced meaningful worsening versus placebo measured by EQ-5D utility score and FACT-P total score. Prior docetaxel use and current bisphosphonate use did not affect these findings. Treatment was a significant predictor of EQ-5D utility score, with radium-223 associated with higher scores versus placebo (0.56 versus 0.50, respectively; P = 0.002). Findings were similar for FACT-P total score (99.08 versus 95.22, respectively; P = 0.004).

CONCLUSIONS: QOL data from ALSYMPCA demonstrated that improved survival with radium-223 is accompanied by significant QOL benefits, including a higher percentage of patients with meaningful QOL improvement and a slower decline in QOL over time in patients with CRPC.

Self-refraction, ready-made glasses and quality of life among rural myopic Chinese children: a non-inferiority randomized trial.

PURPOSE: To study, for the first time, the effect of wearing ready-made glasses and glasses with power determined by self-refraction on children's quality of life. METHODS: This is a randomized, double-masked non-inferiority trial. Children in grades 7 and 8 (age 12-15 years) in nine Chinese secondary schools, with presenting visual acuity (VA) ≤6/12 improved with refraction to ≥6/7.5 bilaterally, refractive error ≤-1.0 D and <2.0 D of anisometropia and astigmatism bilaterally, were randomized to receive ready-made spectacles (RM) or identical-appearing spectacles with power determined by: subjective cycloplegic retinoscopy by a university optometrist (U), a rural refractionist (R) or non-cycloplegic self-refraction (SR). Main study outcome was global score on the National Eye Institute Refractive Error Quality of Life-42 (NEI-RQL-42) after 2 months of wearing study glasses, comparing other groups with the U group, adjusting for baseline score. RESULTS: Only one child (0.18%) was excluded for anisometropia or astigmatism. A total of 426 eligible subjects (mean age 14.2 years, 84.5% without glasses at baseline) were allocated to U [103 (24.2%)], RM [113 (26.5%)], R [108 (25.4%)] and SR [102 (23.9%)] groups, respectively. Baseline and endline score data were available for 398 (93.4%) of subjects. In multiple regression models adjusting for baseline score, older age (p = 0.003) and baseline spectacle wear (p = 0.016), but not study group assignment, were significantly associated with lower final score. CONCLUSION: Quality of life wearing ready-mades or glasses based on self-refraction did not differ from that with cycloplegic refraction by an experienced optometrist in this non-inferiority trial.

Validação do Youth Quality of Life Instrument para a população portuguesa: YQOL-R

É incontornável o estatuto que o conceito de qualidade de vida assume hoje na prática e políticas de saúde pública. Na infância e adolescência é ainda escassa a investigação, tornando-se crucial o desenvolvimento de instrumentos de qualidade vida relacionada com a saúde validados para esta população. O presente trabalho tem como objetivo fundamental analisar as qualidades psicométricas e validar a versão portuguesa do Youth Quality of Life (YQOL-R) (Patrick, et al., 2002). A amostra é constituída por 507 adolescentes, com idades compreendidas entre os 12 e os 19 anos, a frequentar o 3º ciclo do ensino básio e ensino secundário de escolas públicas do ensino regular. Para além do citado instrumento a validar, os jovens preencheram também, para a análise da validade convergente e divergente, o Kidscreen-27 (Gaspar & Matos, 2008) e a Escala da Depressão, Ansiedade e Stresse (EADS-21) (Pais-Ribeiro, Honrado & Leal, 2004). Os resultados mostram que o YQOL-R apresenta uma estrutura fatorial de quatro fatores, semelhantes à versão original americana (individual, relações sociais, ambiente e qualidade de vida em geral). Possui uma boa consistência interna e uma adequada estabilidade temporal. Mostrou correlações significativas e no sentido esperado com as variáveis em estudo. Foram igualmente encontradas diferenças de género em relação à qualidade de vida, sendo os rapazes a reportarem em média níveis mais elevados de perceção da qualidade de vida, comparativamente às raparigas. Futuros estudos devem ser realizados em amostras clínicas para confirmação dos dados. Não obstante esta limitação, o presente estudo contribuiu para a disponibilização de um novo instrumento para avaliação da qualidade de vida em crianças e adolescentes, o qual evidenciou boas propriedade psicométricas, apoiando, assim empiricamente, a sua utilização nas práticas de saúde e investigação em amostras da comunidade. / Nowadays, it´s unavoidable the status that, the concept of quality of life assumes in practices and politics of public health. In childhood and adolescence it´s weak the investigation but it´s crucial the development of instruments of quality of life related to health validated to this population. The present work has an important aim, it´s analyze the psychometric qualities and validate the Portuguese version of Youth Quality of Life (YQOL-R) (Patrick, et al., 2002). The sample consists of 507 adolescents, aged between 12 and 19 years old and they attend the 3 rd cycle of basic education and secondary education schools in villages of regular education. Apart from that instrument, teenagers fill in, also, to the analysis convergent and divergent, the Kidscreen-27 (Gaspar & Matos, 2008) and the Depression, Anxiety and Stress Scale (EADS-21) (Pais-Ribeiro, Honrado & Leal, 2004). The results show that the YQOL-R presents a factorial structure with four factors similar to original American version (individual, social relations, environment and general quality of life), presenting a good internal consistence and an adequate temporal stability. Substantial correlations showed and in the expected way with the variables in study. Have been found differences of gender related to quality of life, boys reported on average higher levels of quality of life perception, comparatively to the girls. Future studies must be performed in clinical samples to confirm the findings. In spite of this restriction, the actual study contributes to providing a new instrument to evaluate the quality of life in children and adolescents, this evidenced good psychometric properties, supported empirically its application in heath practices and investigation in community samples.

Adaptation of the MacNew quality of life questionnaire after myocardial infarction in an Iranian population

BACKGROUND: Health-related quality of life (HRQL) assessment is an important measure of the impact of a wide range of disease process on an individual. To date, no HRQL tool has been evaluated in an Iranian population with cardiovascular disorders, specifically myocardial infarction, a major cause of mortality and morbidity. The MacNew Heart Disease Health-related Quality of Life instrument is a disease-specific HRQL questionnaire with satisfactory validity and reliability when applied cross-culturally. METHOD: A Persian version of MacNew was prepared by both forward and backward translation by bilinguals after which a feasibility test was performed. Consecutive patients (n = 51) admitted to a coronary care unit with acute myocardial infarction were recruited for measurement of their HRQL with retest one month after discharge in the follow-up clinic. Principal components analysis, intra-class correlation reliability, internal consistency, and test-retest reliability were assessed. RESULTS: Trivial rates of missing data confirmed the acceptability of the tool. Principal component analysis revealed that the three domains, emotional, social and physical, performed as well as in the original studies. Internal consistency was high and comparable to other studies, ranging from 0.92 for the emotional and physical domains, to 0.94 for the social domain, and to 0.95 for the Global score. Domain means of 5, 5.3 and 4.9 for emotional, physical and social respectively indicate that our Iranian population has similar emotional and physical but worse social HRQL scores. Test-retest analysis showed significant correlation in emotional and physical domains (P < 0.05). CONCLUSION: The Persian version of the MacNew questionnaire is comparable to the English version. It has high internal consistency and reasonable reproducibility, making it an appropriate specific quality of life tool for population-based studies and clinical practice in Iran in patients who have survived an acute myocardial infraction. Further studies are needed to confirm its validity in larger populations with cardiovascular disease

Sex differences in quality of life in stroke survivors. Data from the Tinzaparin in Acute Ischaemic Stroke Trial (TAIST)

Introduction: Female sex is predictive of poor functional outcome in stroke, even after correction for prognostic factors. Poor quality of life (QoL) is observed in stroke survivors, with lower scores seen in the most disabled patients. We used data from the TAIST trial to assess the relationship between sex and QoL after ischaemic stroke. Methods: TAIST was a randomised controlled trial assessing the safety and efficacy of tinzaparin versus aspirin in 1,484 patients with acute ischaemic stroke. QoL was measured at 180 days post randomisation using the short-form 36 health survey which assesses QoL across eight domains. The relationship between sex and each domain was assessed using ordinal regression, both unadjusted and adjusted for key prognostics factors. Results: Of the 1,484 patients randomised into TAIST, 216 had died at 180 days post randomisation. 1,268 survivors were included in this analysis, 694 males (55%), 574 females (45%). Females tended to score lower than males across all QoL domains (apart from general health); statistically significant lower scores were seen for physical functioning (odds ratio (OR) 0.58, 95% confidence interval (CI) 0.47-0.72), vitality (OR 0.79, 95% CI 0.64-0.98) and mental health (OR 0.75, 95% CI 0.61-0.93). The results for physical functioning and mental health remained significant after adjustment for prognostic variables (OR 0.73, 95% CI 0.58-0.92; OR 0.76, 95% CI 0.60-0.95 respectively). Conclusions: QoL, in particular physical function and mental health domains, is lower in female patients after stroke. This difference persists even after correction for known prognostic factors such as age and stroke severity.

Different Multimorbidity Measures Result in Varying Estimated Levels of Physical Quality of Life in Individuals with Multimorbidity: A Cross-Sectional Study in the General Population

International audience

Psychometric properties of the oral health impact profile and new methodological approach

Objective: Evaluate the validity, reliability, and factorial invariance of the complete Portuguese version of the Oral Health Impact Profile (OHIP) and its short version (OHIP-14). Methods: A total of 1,162 adults enrolled in the Faculty of Dentistry of Araraquara/UNESP participated in the study; 73.1% were women; and the mean age was 40.7 ± 16.3 yr. We conducted a confirmatory factor analysis, where χ2/df, comparative fit index, goodness of fit index, and root mean square error of approximation were used as indices of goodness of fit. The convergent validity was judged from the average variance extracted and the composite reliability, and the internal consistency was estimated by Cronbach standardized alpha. The stability of the models was evaluated by multigroup analysis in independent samples (test and validation) and between users and nonusers of dental prosthesis. Results: We found best-fitting models for the OHIP-14 and among dental prosthesis users. The convergent validity was below adequate values for the factors “functional limitation” and “physical pain” for the complete version and for the factors “functional limitation” and “psychological discomfort” for the OHIP-14. Values of composite reliability and internal consistency were below adequate in the OHIP-14 for the factors “functional limitation” and “psychological discomfort.” We detected strong invariance between test and validation samples of the full version and weak invariance for OHIP-14. The models for users and nonusers of dental prosthesis were not invariant for both versions. Conclusion: The reduced version of the OHIP was parsimonious, reliable, and valid to capture the construct “impact of oral health on quality of life,” which was more pronounced in prosthesis users.