Self-reported Quality Of Life Scores Research Articles

Measuring self-reported quality of life in 8- to 11-year-old children born with gastroschisis: Is the KIDSCREEN questionnaire acceptable?

Children born with gastroschisis have a good prognosis but require surgical correction and long-term follow up. There has been little research on the impact of gastroschisis on the child's health-related quality of life (QoL). The aim was to assess face and content validity of the KIDSCREEN-52 questionnaire as a measurement of self- and proxy-reported QoL in children born with gastroschisis and to evaluate self-reported QoL in these children compared with the reference population. In this cross-sectional exploratory study, we used the validated KIDSCREEN-52 questionnaire and individual interview with 8- to 11-year-old children born with gastroschisis who were identified from the Northern Congenital Abnormality Survey. Self-reported QoL scores were compared with age-matched UK norms by using the two-sample t test. Ten children (median age 9.6 years, interquartile range 8.3-11.0) and their parents participated. Children found KIDSCREEN a helpful tool to explore their feelings and that it covered life aspects important to them. Parents believed that all priority areas were represented and that it was straightforward for their children to complete. In nine KIDSCREEN domains, children with gastroschisis had similar QoL scores to those in the reference population, and in one (psychological well-being) the mean score was significantly better (p = 0.03). All children described their health as good/very good or excellent; eight said they would not like to change anything about their body. The KIDSCREEN questionnaire has adequate face and content validity as a measure of QoL in children with gastroschisis and is acceptable to both children and parents.

Quality of Life of Children with Congenital Heart Diseases: A Multicenter Controlled Cross-Sectional Study.

To assess the health-related quality of life (QoL) in children with congenital heart diseases (CHD) with a validated questionnaire in comparison with control children. We prospectively recruited 282 children with CHD aged from 8 to 18years in two tertiary care centers (France and Belgium) and 180 same-age controls in randomly selected French schools. Children's QoL was self-reported with the KIDSCREEN-52 questionnaire and reported by parents with the KIDSCREEN-27. QoL scores of each dimension were compared between CHD and controls and between the classes of disease severity. Both centers were comparable for most demographic and clinical data. Age- and gender-adjusted self-reported QoL scores were lower in CHD children than in controls for physical well-being (mean±SEM 45.97±0.57 vs 50.16±0.71, p<0.0001), financial resources (45.72±0.70 vs 48.85±0.87, p=0.01), peers/social support (48.01±0.72 vs 51.02±0.88, p=0.01), and autonomy in the multivariate analysis (47.63±0.69 vs 49.28±0.85, p=0.04). Parents-reported scores were lower in CHD children for physical (p<0.0001), psychological well-being (p=0.04), peers/social support (p<0.0001), and school environment (p<0.0001) dimensions. Similarly, the disease severity had an impact on physical well-being (p<0.001), financial resources (p=0.05), and peers/social support (p=0.01) for self-reported dimensions, and on physical well-being (p<0.001), psychological well-being (p<0.01), peers/social support (p<0.001), and school environment (p<0.001) for parents-reported dimensions. However, in multivariate analysis on self-reported QoL, disease severity was significantly associated with the self-perception dimension only. Self-reported QoL of CHD children was similar to that of same-age healthy children in seven of 10 dimensions, but parents-reported QoL was impaired in four of five dimensions.

Self‐reported quality of life in pharmacoresistant temporal lobe epilepsy: correlation with clinical variables and memory evaluation

This work explores the effects of clinical variables on self-reported quality of life (QoL) in pharmacoresistant temporal lobe epilepsy (TLE), correlating this information with results from the Quality of Life in Epilepsy questionnaire (QOLIE-31) and selective memory tests of the Barcelona Battery and the Rey-Osterrieth figure. We retrospectively analysed the records of 60 TLE patients and correlated patient variables (e.g. gender, aetiology; mesial TLE with hippocampal sclerosis [HS] versus lesional TLE, side of ictal onset, age, age at onset, duration of epilepsy, seizure frequency, and use of AEDs) with selective memory test scores and self-reported QoL. Right ictal onset was associated with lower emotional well-being scores. MTLE-HS patients had lower QOLIE-31 scores for seizure worry, social function, overall QoL, energy/fatigue, cognitive function, and obtained a lower overall score, compared to those with lesional TLE. Older age at epilepsy onset was associated with worse emotional well-being, energy/fatigue, medication effects, and seizure worry outcomes. Higher seizure frequency and older age at time of evaluation were associated with lower cognitive function scores. Generalised seizures were associated with lower scores based on the variables: seizure worry, overall quality of life, emotional well-being, and cognitive function. Regarding memory tests, only visuospatial memory correlated positively with cognitive function score. Patients with MTLE-HS underwent evaluation for pharmacoresistant epilepsy, on average, 10 years later than those with lesional TLE. MTLE-HS, right-sided epileptogenic zone, late onset, and higher seizure frequency were associated with worse QoL. Objective testing revealed specific memory deficits that were not reflected in self-reported QoL scores.

Lower limb functioning and its impact on quality of life in ambulatory children with cerebral palsy

BackgroundChildren with cerebral palsy (CP) are confronted on a daily basis with their motor problems affecting gait, which might impact on their quality of life (QOL). AimThe goal of this study was to evaluate the impact of gross motor and gait function on QOL in ambulatory children with CP attending regular school. MethodsA condition-specific questionnaire (CP QOL-Child), including a parent/proxy and child self-report, was used to assess the relation between patient characteristics, lower limb impairments and functioning, and the different aspects of the child's QOL. Data on therapy management, lower limb impairments, and gross motor and gait function was collected for 81 children with CP (10.5 ± 3.0 years). CP QOL-Child questionnaires were completed by a parent/proxy for all 81 children and by 39 of the children over 9 years. ResultsThe mean self-reported QOL score (78.2 ± 9.6) was significantly higher than the mean parent/proxy reported score (73.9 ± 10.2). Lower limb spasticity and higher frequency of BTX-A injections correlated with worse scores for the pain and impact of disability domain. Results further showed the adverse impact of the severity of gait pathology on QOL perception for the parents/proxy and the child self-report. Gait speed was an important factor for the parents/proxy, though correlated less with self-perceived QOL for the children. ConclusionsChildren and parents identified similar factors that adversely affect QOL, whereby the amount of gait pathology was shown to play a crucial role. Only gait speed seemed to be of higher importance for the parents compared to the children.

Sleep–wake patterns in schizophrenia patients compared to healthy controls

Objectives. The aim of this study was to examine the differences between a sample of patients with schizophrenia and a sample of healthy controls in terms of sleep patterns and self-reported sleep quality and quality of life (QoL). Methods. Thirty-four schizophrenia outpatients (SP), 12 women and 22 men and 34 healthy subjects (HS), 15 women and 19 men, participated in this study. Wrist-actigraphy recordings and a sleep diary were used for sleep–wake cycle assessment. The quality of sleep was measured using the Pittsburgh Sleep Quality Index (PSQI), the QoL was evaluated using the World Health Organization Quality of Life – Abbreviated version (WHOQOL-Bref). The Positive and Negative Syndrome Scale (PANSS) was used for psychopathology assessment. Results. Patients sleep more at night, but have poorer sleep efficiency, than HS. Sleep latency and nighttime awakenings were significantly higher in SP. Self-reported QoL scores were significantly higher, in all four domains, in HS. Scores on PSQI were significantly higher in SP, indicating a worse quality of sleep. Two disturbed patterns of sleep–wake phase were found in SP: advance sleep-phase syndrome (ASPS) (N = 3) and irregular sleep–wake rhythm (N = 3). Conclusion. Schizophrenia patients have more disturbed sleep–wake patterns and poor sleep quality and quality of life compared with healthy controls.

The impact of smoking cessation on patient quality of life

To evaluate changes in health-related quality of life (HRQoL) after twelve months of smoking cessation. This was a prospective study to evaluate the effectiveness of a smoking cessation program on the quality of life of 60 self-referred subjects, at a public hospital, during the period of August 2006 to December 2007. The program consisted of 2-h group sessions once a week during the first month and then every 15 days over six months, followed by monthly phone contacts for another six months. The treatment was based on behavior modification and the use of bupropion in combination with nicotinic replacement therapy. Abstinence was verified by exhaled CO measurements. Patient HRQoL was quantified using the Medical Outcomes Study 36-item Short-Form Health Survey (SF-36) questionnaire. Differences in quality of life scores between quitters and non-quitters at twelve months after the initial intervention were evaluated using analysis of covariance with baseline characteristics as covariates. Self-reported quality of life scores were significantly higher among the 40 quitters than among the 20 non-quitters. The following SF-36 domains were most affected: role-emotional (p = 0.008); general health (p = 0.006); vitality (p < 0.001); and mental health (p = 0.002). At twelve months after the smoking cessation intervention, the SF-36 mental component and physical component summary scores were higher among quitters than among non-quitters (p = 0.004 and p = 0.001, respectively). Our findings illustrate that smoking abstinence is related to better HRQoL, especially in aspects of mental health.

Improved Measures of Quality of Life, Lipid Profile, and Lipoatrophy After Treatment Interruption in HIV-Infected Patients With Immune Preservation: Results of ACTG 5170

Antiretroviral treatment interruption (TI) occurs frequently in routine clinical practice. The consequences of TI on quality of life (QOL), body habitus, and lipid parameters have not been studied. We assessed QOL, symptoms, lipid measurements, and body circumference changes in patients who underwent prolonged TI (up to 96 weeks) in AIDS Clinical Trials Group 5170, a multicenter, prospective study. Major entry criteria were pre-antiretroviral therapy (ART) and entry CD4 count > 350 cells/mm3, entry HIV RNA < 55,000 copies/mL, and on ART for > 6 months. QOL was assessed at baseline and subsequent time points (to week 96) by patient self-report (0-100 scale), by patient-reported Symptoms Distress Module, and by the Multidimensional Health Status tool. Fasting total, high-density lipoprotein (HDL) and low-density lipoprotein (LDL) cholesterol, and triglycerides were measured at baseline and subsequent time points to week 24. Neck, arm, mid-thigh, waist, and hip circumferences were measured through week 96. Paired t tests, Wilcoxon signed rank tests, and the generalized estimating equation approach were used in the data analysis. A total of 167 subjects enrolled with median baseline and nadir CD4 count of 833 and 436 cells/mm3, respectively, and median time on ART 4.5 years. One hundred forty-nine subjects were receiving a thymidine analog-containing regimen (zidovudine or stavudine before TI). Self-reported QOL score on ART started high (mean 83.4 at baseline) and remained so after TI (83.0 at week 96, P = 0.49). Mean number of symptoms decreased from 8.2 at baseline to 7.0 at week 96, P = 0.016. The overall symptom summary score decreased from baseline to week 96, P = 0.01. The symptoms most frequently reported during TI were fatigue, feeling sad, nervousness, insomnia, myalgias, and changes in body appearance. There were no significant changes from baseline in the Multidimensional Health Status mental or physical domain scores. After TI, lipids (total cholesterol, LDL cholesterol, HDL cholesterol, and triglycerides) decreased at weeks 12 and 24. Lipid changes were similar in patients stopping a nonnucleoside reverse transcriptase inhibitor vs a protease inhibitor regimen, except for HDL, which showed greater decreases in those interrupting an nonnucleoside reverse transcriptase inhibitor. Body circumference measurements of arm, waist, hip, and mid-thigh increased after TI. In a cohort of individuals with high QOL and preserved immune function, QOL did not change during a prolonged TI. Modest decreases in total cholesterol, LDL and HDL cholesterol, and triglycerides and a modest increase in limb fat were observed.

Quality of Life in Youth With Tourette's Syndrome and Chronic Tic Disorder

This study sought to examine quality of life (QoL) in clinic-referred children and adolescents (n = 59, M age = 11.4±2.6 years) with a chronic tic disorder. The QoL scores for tic patients were lower than for healthy controls but higher than for the psychiatric sample on the majority of domains. Children's self-reported QoL scores and a measure of tic severity were moderately and inversely correlated. Parent reports of their child's QoL were weakly related to tic severity. Correlations between parent and child ratings of QoL for children ages 8 to 11 years were generally higher than those for youth ages 12 to 17 years. Finally, externalizing behavior moderated the relations between tic severity and parent-rated QoL, such that tic severity was significantly associated with parent-rated QoL for children with below average externalizing symptoms but not for children 3with above average externalizing symptoms.

Quality of Life for Children With Functional Abdominal Pain: A Comparison Study of Patients' and Parents' Perceptions

Children with chronic abdominal pain of nonorganic origin, termed functional abdominal pain (FAP), experience school absences and social withdrawal and report impaired physical ability. The aim of this study was to assess patients' and parents' perceptions of health-related quality of life (QoL) for children with FAP. Between October 2002 and November 2003, 209 children (including 125 girls; age: 11.2 +/- 3.5 years) and 209 parents were recruited from a pediatric referral center. At the time of their initial evaluations, participants completed a validated, health-related QoL instrument (Pediatric Quality of Life Inventory), which was scored on a scale of 0 (poor) through 100 (best). Children with FAP (n = 65) and their families were compared with control groups of healthy children (n = 46) and children with histologically proven inflammatory bowel disease (IBD) (n = 42) or gastroesophageal reflux disease (GERD) (n = 56). Children with FAP had self-reported QoL scores (score: 78) that were similar to those for children with GERD (score: 80) or IBD (score: 84). Children with FAP had lower QoL scores than did healthy children (score: 88). Parents of children with FAP reported lower QoL scores, compared with their children's scores (scores: 70 vs 78). Children with FAP reported lower QoL, compared with their healthy peers, and had the same QoL scores as did children with IBD or GERD. Parents' perceptions of QoL for children with FAP were lower than their children's self-reported scores. These findings highlight the clinical significance of FAP and may provide insight into one facet of the disease's biopsychosocial etiology.

Assessment of pain control, quality of life, and predictors of success after gamma knife surgery for the treatment of trigeminal neuralgia

There are various surgical treatment alternatives for trigeminal neuralgia (TN), but there is no single scale that can be used uniformly to assess and compare one type of intervention with the others. In this study the objectives were to determine factors associated with pain control, pain-free survival, residual pain, and recurrence after gamma knife surgery (GKS) treatment for TN, and to correlate the patients' self-reported quality of life (QOL) and satisfaction with the aforementioned factors. Between the years 2000 and 2004, the authors treated 81 patients with medically refractory TN by using GKS. Fifty-two patients responded to a questionnaire regarding pain control, activities of daily living, QOL, and patient satisfaction. The median follow-up duration was 16.5 months. Twenty-two patients (42.3%) had complete pain relief, 14 (26.9%) had partial but satisfactory pain relief, and in 16 patients (30.8%) the treatment failed. Seven patients (13.5%) reported a recurrence during the follow-up period, and 25 (48.1%) reported a significant (> 50%) decrease in their pain within the 1st month posttreatment. The mean decrease in the total dose of pain medication was 75%. Patients' self-reported QOL scores improved 90% and the overall patient satisfaction score was 80%. The authors found that GKS is a minimally invasive and effective procedure that yields a favorable outcome for patients with recurrent or refractory TN. It may also be offered as a first-line surgical modality for any patients with TN who are unsuited or unwilling to undergo microvascular decompression.

Efficacy of thermal balloon ablation in patients with abnormal uterine bleeding

OBJECTIVE: The purpose of this study was to assess changes in menstrual pattern, quality of life, and patient satisfaction after thermal balloon ablation for abnormal uterine bleeding. STUDY DESIGN: One hundred forty-one women who underwent thermal balloon ablation in our institution initially had their charts reviewed for demographics, procedure data, clinical history, and follow-up. Thereafter, a telephone interview was conducted to assess postprocedural menstrual pattern, quality of life, and patient satisfaction. Data were compared with the use of appropriate tests for categoric or continuous variables and logistic regression. RESULTS: The median follow-up time was 18 months, and a telephone interview was obtained for 119 of 141 patients. A reduction in days per cycle (9.6 vs 3.1 days, P<.0001) and in pads per day (12.8 vs 2.5 pads/d, P<.0001) and an improvement in self-reported quality of life scores (2.8 vs 9.0, P<.0001) were observed after thermal balloon ablation. Hysterectomy was required in 21 of 141 patients (15%). Assessment of the level of satisfaction showed that 96% of patients were satisfied or very satisfied with the procedure. No major complications or deaths were related to thermal balloon ablation. CONCLUSION: Thermal balloon ablation is a safe and efficient method to treat abnormal uterine bleeding. It reduces the menstrual flow, improves the quality of life, and remarkably fulfills expectations in selected patients.