The Gilles de la Tourette Syndrome-Quality of Life Scale for children and adolescents (C&A-GTS-QOL):development and validation of the Italian version

BACKGROUND: Gilles de la Tourette syndrome (GTS) is a chronic childhood-onset neuropsychiatric disorder with a significant impact on patients' health-related quality of life (HR-QOL). Cavanna et al. (Neurology 2008; 71: 1410-1416) developed and validated the first disease-specific HR-QOL assessment tool for adults with GTS (Gilles de la Tourette Syndrome-Quality of Life Scale, GTS-QOL). This paper presents the translation, adaptation and validation of the GTS-QOL for young Italian patients with GTS. METHODS: A three-stage process involving 75 patients with GTS recruited through three Departments of Child and Adolescent Neuropsychiatry in Italy led to the development of a 27-item instrument (Gilles de la Tourette Syndrome-Quality of Life Scale in children and adolescents, C&A-GTS-QOL) for the assessment of HR-QOL through a clinician-rated interview for 6-12 year-olds and a self-report questionnaire for 13-18 year-olds. RESULTS: The C&A-GTS-QOL demonstrated satisfactory scaling assumptions and acceptability. Internal consistency reliability was high (Cronbach's alpha > 0.7) and validity was supported by interscale correlations (range 0.4-0.7), principal-component factor analysis and correlations with other rating scales and clinical variables. CONCLUSIONS: The present version of the C&A-GTS-QOL is the first disease-specific HR-QOL tool for Italian young patients with GTS, satisfying criteria for acceptability, reliability and validity. © 2013 - IOS Press and the authors. All rights reserved.

Quality of life after total laparoscopic hysterectomy versus total abdominal hysterectomy for stage I endometrial cancer (LACE) : a randomised trial

Background: The two-stage Total Laparoscopic Hysterectomy (TLH) versus Total Abdominal Hysterectomy (TAH) for stage I endometrial cancer (LACE) randomised controlled trial was initiated in 2005. The primary objective of stage 1 was to assess whether TLH results in equivalent or improved QoL up to 6 months after surgery compared to TAH. The primary objective of stage 2 was to test the hypothesis that disease-free survival at 4.5 years is equivalent for TLH and TAH. Results addressing the primary objective of stage 1 of the LACE trial are presented here. Methods: The first 361 LACE participants (TAH n= 142, TLH n=190) were enrolled in the QoL substudy at 19 centres across Australia, New Zealand and Hong Kong, and 332 completed the QoL analysis. Randomisation was performed centrally and independently from other study procedures via a computer generated, web-based system (providing concealment of the next assigned treatment) using stratified permuted blocks of 3 and 6, and assigned patients with histologically confirmed stage 1 endometrioid endometrial adenocarcinoma and ECOG performance status <2 to TLH or TAH stratified by histological grade and study centre. No blinding of patients or study personnel was attempted. QoL was measured at baseline, 1 and 4 weeks (early), and 3 and 6 months (late) after surgery using the Functional Assessment of Cancer Therapy-General (FACT-G) questionnaire. The primary endpoint was the difference between the groups in QoL change from baseline at early and late time points (a 5% difference was considered clinically significant). Analysis was performed according to the intention-to-treat principle using generalized estimating equations on differences from baseline for the early and late QoL recovery. The LACE trial is registered with clinicaltrials.gov (NCT00096408) and the Australian New Zealand Clinical Trials Registry (CTRN12606000261516). Patients for both stages of the trial have now been recruited and are being followed up for disease-specific outcomes. Findings: The proportion of missing values at the 5%, 10% 15% and 20% differences in the FACT-G scale was 6% (12/190) in the TLH and 14% (20/142) in the TAH group. There were 8/332 conversions (2.4%, 7 of which were from TLH to TAH). In the early phase of recovery, patients undergoing TLH reported significantly greater improvement of QoL from baseline compared to TAH in all subscales except the emotional and social well-being subscales. Improvements in QoL up to 6 months post-surgery continued to favour TLH except for the emotional and social well-being of the FACT and the visual analogue scale of the EuroQoL five dimensions (EuroQoL-VAS). Length of operating time was significantly longer in the TLH group (138±43 mins), than in the TAH group at (109±34 mins; p=0.001). While the proportion of intraoperative adverse events was similar between the treatment groups (TAH 8/142, 5.6%; TLH 14/190, 7.4%; p=0.55), postoperatively, twice as many patients in the TAH group experienced adverse events of CTC grade 3+ than in the TLH group (33/142, 23.2% and 22/190, 11.6%, respectively; p=0.004). Postoperative serious adverse events occurred more frequently in patients who had a TAH (27/142, 19.0%) than a TLH (15/190, 7.9%) (p=0.002). Interpretation: QoL improvements from baseline during early and later phases of recovery, and the adverse event profile significantly favour TLH compared to TAH for patients treated for Stage I endometrial cancer.

The effect of Tai Chi on health related quality of life in people with elevated blood glucose or diabetes : a randomized controlled trial

Purpose The aim was to assess the effects of a Tai Chi based program on health related quality of life (HR-QOL) in people with elevated blood glucose or diabetes who were not on medication for glucose control. Method 41 participants were randomly allocated to either a Tai Chi intervention group (N = 20) or a usual medical care control group (N = 21). The Tai Chi group involved 3 x 1.5 hour supervised and group-based training sessions per week for 12 weeks. Indicators of HR-QOL were assessed by self-report survey immediately prior to and after the intervention. Results There were significant improvements in favour of the Tai Chi group for the SF36 subscales of physical functioning (mean difference = 5.46, 95% CI = 1.35-9.57, P < 0.05), role physical (mean difference = 18.60, 95% CI = 2.16-35.05, P < 0.05), bodily pain (mean difference = 9.88, 95%CI = 2.06-17.69, P < 0.05) and vitality (mean difference = 9.96, 95% CI = 0.77-19.15, P < 0.05). Conclusions The findings show that this Tai Chi program improved indicators of HR-QOL including physical functioning, role physical, bodily pain and vitality in people with elevated blood glucose or diabetes who were not on diabetes medication.

Response shift in the assessment of quality of life among people attending cardiac rehabilitation

Objectives: To examine whether any response shift in quality of life assessment over the course of a cardiac rehabilitation programme could be explained by changes in individuals’ internal standards (recalibration), values (reprioritization) and/or conceptualization of quality of life and the extent to which any response shift could be explained by health locus of control, optimism and coping strategy. Design: Longitudinal survey design. Methods: The SEIQoL-DW was administered at the beginning and end of a cardiac rehabilitation programme. At the end of the programme, the SEIQoL-DW then-test was also administered to measure response shift. A total of 57 participants completed these measures and other measures to assess health locus of control, optimism and coping. Results: Response shift effects were observed in this population mainly due to recalibration. When response shift was incorporated into the analysis of QoL a larger treatment effect was observed. Active coping as a mechanism in the response shift model was found to have a significant positive correlation with response shift. Conclusion: This study showed that response shift occurs during cardiac rehabilitation. The occurrence of response shift in QoL ratings over time for this population could have implications for the estimation of the effectiveness of the intervention.

Cataract extraction and patient vision-related quality of life: a cohort study

Aims: Cataract surgery is one of the most common surgeries performed, but its overuse has been reported. The threshold for cataract surgery has become increasingly lenient; therefore, the selection process and surgical need has been questioned. The aim of this study was to evaluate the changes associated with cataract surgery in patient-reported vision-related quality of life (VR-QoL).

Methods: A prospective cohort study was conducted. Consecutive patients referred to cataract clinics in an NHS unit in Scotland were identified. Those listed for surgery were invited to complete a validated questionnaire (TyPE) to measure VR-QoL pre- and post-operatively. TyPE has five different domains (near vision, distance vision, daytime driving, night-time driving, and glare) and a global score of vision. The influence of pre-operative visual acuity (VA) levels, vision, and lens status of the fellow eye on changes in VR-QoL were explored. 

Results: A total of 320 listed patients were approached, of whom 36 were excluded. Among the 284 enrolled patients, 229 (81%) returned the questionnaire after surgery. Results revealed that the mean overall vision improved, as reported by patients. Improvements were also seen in all sub-domains of the questionnaire.

Conclusion: The majority of patients appear to have improvement in patient-reported VR-QoL, including those with good pre-operative VA and previous surgery to the fellow eye. VA thresholds may not capture the effects of the quality of life on patients. This information can assist clinicians to make more informed decisions when debating over the benefits of listing a patient for cataract extraction.

The quality of life as perceived by students in the Business Division, Niagara College

within the Business Division of Niagara College of Arts and Technology, 245 students were utilised for a convenience stratified sample of First, Second, and Third Year ,students. The students answered 33 items regarding their Quality of Program and 40 concerning their Quality of Life, along with demographic and motivational questions and open comments. The responses were classified using an SPSS/PC statistical package and frequency statistics extracted. The data were examined for the entire sample and also for each year within the Business Division. There were high positive responses to both QOP andQOL items. However, there was greater satisfaction for students in First Year Accelerated, Second Year and Third Year than First Year. All students noted high satisfaction for the overall assessment of the program. There were lower positive responses for Professor Items where students were unsure if teachers helped them to do their best or took a personal interest in helping students do their best. This may highlight problems which need attention in the Freshman year. The area where all students were most neutral was regarding how others view them which raises questions of the self-esteem of students at Niagara College. The implications from this study seem to suggest that well-motivated, small, closely identified groups with interactive teaching methods lead to positive QOL and QOP.

Quality of life in multiple sclerosis: translation in French Canadian of the MSQoL-54

Affiliation: Louise Lafortune: Faculté de médecine, Université de Montréal

Psychometric properties of the quality of life questionnaire for children with CP

This paper describes the development and psychometric properties of a condition-specific quality of life instrument for children with cerebral palsy (CP QOL-Child). A sample of 205 primary caregivers of children with CP aged 4 to 12 years (mean 8y 5mo) and 53 children aged 9 to 12 years completed the CP QOL-Child. The children (112 males, 93 females) were sampled across Gross Motor Function Classification System (GMFCS) levels (Level I=18%, II=28%, III=14%, IV=11%, V=27%). Primary caregivers also completed other measures of child health (Child Health Questionnaire; CHQ), QOL (KIDSCREEN), and functioning (GMFCS). Internal consistency ranged from 0.74 to 0.92 for primary caregivers and from 0.80 to 0.90 for child self-report. For primary caregivers, 2-week test-retest reliability ranged from 0.76 to 0.89. The validity of the CP QOL is supported by the pattern of correlations between CP QOL-Child scales with the CHQ, KIDSCREEN, and GMFCS. Preliminary statistics suggest that the child self-report questionnaire has acceptable psychometric properties. The questionnaire can be freely accessed at http://www.deakin.edu.ac/hmnbs/chase/cerebralpalsy/cp_qol_home.php.

Quality of life indexes for national policy: review and agenda for research

A number of governments and public policy institutes have developed ldquoQuality of Life Indexesrdquo – statistics that attempt to measure the quality of life for entire states or regions. We develop 14 criteria for determining the validity and usefulness of such QOL indexes to public policy. We then review 22 of the most-used QOL indexes from around the world. We conclude that many of the indexes are successful in that they are reliable, have established time series measures, and can be disaggregated to study subpopulations. However, many fall short in four areas: (1) indexes vary greatly in their coverage and definitions of domains of QOL, (2) none of the indexes distinguish among the concepts of input, throughput, and output that are used by public policy analysts, (3) they fail to show how QOL outputs are sensitive to public policy inputs, and (4) none have examined convergent validity against each other. We conclude that many of these indexes are potentially very useful for public policy and recommend research to further improve them.

A comparison of mood and quality of life among people with progressive neurological illnesses and their caregivers

The current study was designed to investigate differences in mood and a range of QOL domains among 423 patients and 335 caregivers of people with motor neurone disease (MND), Huntington’s disease (HD), Parkinson’s, and multiple sclerosis (MS). Patients and caregivers completed an anonymous questionnaire that evaluated their mood (anxiety, depression, fatigue, confusion) and QOL (physical, psychological, social, environment). The results demonstrated that caregivers of people with MND and HD experienced most problems with their mood and QOL compared to caregivers of people in the other illness groups. There were few differences in mood or QOL between patients and caregivers. Patients generally showed greater confusion, physical impairment, and psychological maladjustment. The findings suggest that educational and intervention programs need to be developed to help both patients and their caregivers to adjust and cope with these illnesses, particularly caregivers of people with MND and HD.

Construction of the descriptive system for the assessment of quality of life AQoL-6D utility instrument

Background
Multi attribute utility (MAU) instruments are used to include the health related quality of life (HRQoL) in economic evaluations of health programs. Comparative studies suggest different MAU instruments measure related but different constructs. The objective of this paper is to describe the methods employed to achieve content validity in the descriptive system of the Assessment of Quality of Life (AQoL)-6D, MAU instrument.

Methods
The AQoL program introduced the use of psychometric methods in the construction of health related MAU instruments. To develop the AQoL-6D we selected 112 items from previous research, focus groups and expert judgment and administered them to 316 members of the public and 302 hospital patients. The search for content validity across a broad spectrum of health states required both formative and reflective modelling. We employed Exploratory Factor Analysis and Structural Equation Modelling (SEM) to meet these dual requirements.

Results and Discussion
The resulting instrument employs 20 items in a multi-tier descriptive system. Latent dimension variables achieve sensitive descriptions of 6 dimensions which, in turn, combine to form a single latent QoL variable. Diagnostic statistics from the SEM analysis are exceptionally good and confirm the hypothesised structure of the model.

Conclusions
The AQoL-6D descriptive system has good psychometric properties. They imply that the instrument has achieved construct validity and provides a sensitive description of HRQoL. This means that it may be used with confidence for measuring health related quality of life and that it is a suitable basis for modelling utilities for inclusion in the economic evaluation of health programs.

What's important in defining quality of life for older people? An exploratory study of the views of older South Australians

Background
Cost-effectiveness analyses of interventions for older adults have traditionally focused on health status. There is increasing recognition of the need to develop new instruments to capture quality of life in a broader sense in the face of age-associated increasing frailty and declining health status, particularly in the economic evaluation of aged and social care interventions which may have positive benefits beyond health. 

Mental health consumers' perceptions of quality of life and mental health care

Research spanning the past decade consistently reports that people with severe mental illnesses experience lower quality of life than the general population, however, little is known about what "quality of life" means to consumers, or how quality of life can be promoted in mental health care. This study measured the Quality of Life of mental health consumers receiving care from a Mental Health Nurse Incentive Program, and examined consumer perceptions of quality of life. The study used an exploratory design incorporating the WHOQOL-brèf survey and four additional qualitative questions for data collection. Data were analysed using descriptive and correlational statistics. Participants (n = 49) reported lower quality of life scores on all four domains of the WHOQOL-brèf and lower overall ratings for "quality of life" than the general population. Having basic needs met, good relationships with family and friends, regular support, and improved social connectedness were identified by consumers as important to their quality of life.

Understanding quality of life in medicine : a new approach

This article introduces the subjective side of quality of life as it has evolved within the discipline of psychology. Subjective well-being is also of special interest within medicine due to its links to pathology and the fact that it is managed by a homeostatic system. This form of management offers an explanation for the unusual properties of subjective well-being, including its normal positivity, stability, and nonlinear relationship to objective variables, such as physical health. Central to understanding is the proposition that subjective well-being mainly consists of a specific form of trait mood. This homeostatically protected mood has a genetic set point and it is the experience of this set-point mood that homeostasis is defending. The resources required to maintain normal homeostatic control are described. If these resources are inadequate to protect the experience of set-point mood, mood positivity falls, and there is a high probability of depression. In this article, the process of homeostasis is shown to assist understanding of intervention effectiveness within both psychology and medicine. This concerns matters of resilience, the nonlinear relationship between levels of subjective well-being, and the strength of challenging agents, and the important understanding that interventions designed to raise subjective well-being are critically dependent on its level at baseline. Key teaching points: • The physiological process of homeostasis has a parallel in psychology in the homeostatic management of subjective well-being. • Subjective well-being is a more globally informative construct than health-related quality of life. • How people feel about themselves and their lives cannot be simply predicted through measures of health. • When subjective well-being homeostasis is defeated, there is a high probability of depression.

Oral health associated with quality of life of people living with HIV/AIDS in Brazil

Background: The epidemic of HIV/AIDS enters into its fourth decade and is still considered an important public health problem in developed and developing countries. The purpose is verify the oral health and other factors that influence the quality of life of people living with HIV/AIDS attending a public service reference in Brazil.Methods: The participants answered the questionnaire on socio-demographic conditions, issues related to HIV and daily habits. The quality of life was analyzed by the HIV/AIDS Targeted Quality of Life (HAT-QoL) instrument with 42 items divided into nine domains: General Activity, Sexual Activity, Confidentiality concerns, Health Concerns, Financial Concern, HIV Awareness, Satisfaction with Life Issues related to medication and Trust in the physician. The oral health data were collected by means of the DMFT index, use and need of dentures and the Community Periodontal Index, according to the criteria proposed by the World Health Organization, by a calibrated researcher. Bivariate and multiple linear regressions were performed.Results: Of the participants, 53.1% were women and had a mean age of 42 years, 53.1% had eight years or less of schooling and 20.3% were not employed. In analyzing the quality of life domain of the HAT-QoL, with a lower average there was: Financial concern (39.4), followed by Confidentiality concern (43.2), Sexual activities (55.2) and Health concerns (62. 88). There was an association between the variables: do not have link to employment (p < 0.001), is brown or black (p = 0.045), alcohol consumption (p = 0.041), did not make use of antiretroviral therapy (p = 0.006), high levels of viral load (p = 0.035) and need for dentures (p = 0.025), with the worse quality of life scores.Conclusion: Socioeconomic and inadequate health conditions had a negative impact on the quality of life of people with HIV/AIDS.