Measurement of health-related quality of life (HRQoL) in dementia is difficult. At some point people with dementia become unable to meaningfully assess their own HRQoL. At such a point in time researchers need to rely on other types of information such as observation or assessments from informal caregivers (proxies). However, caregiver assessments may be biased by several mechanisms. The current study explores whether caregivers project part of their own HRQoL in their assessments of patient HRQoL.
The participants in the current study were 175 pairs, consisting of community-dwelling persons with dementia and their caregivers. The EQ-5D, the EQ-VAS and the QoL-AD were administered to collect HRQoL measurements from patients and caregivers at baseline, 6 months and 12 months. Two linear mixed models were used to investigate factors that bias proxy ratings, one with the EQ-VAS as dependent variable, and one with the EQ-5D utility as dependent variable. The independent variables were caregiver age, caregiver sex and caregiver QoL-AD items.
The linear mixed model with EQ-VAS as dependent variable indicated that 3 caregiver characteristics, namely caregiver age, money (caregiver’s financial situation) and valuation of life as a whole were significant predictors of the patient-by-proxy VAS scores. The linear mixed model with utility value as the dependent variable showed that caregiver age and valuation of the ability to do things for fun were significant predictors of the patient-by-proxy EQ-5D utility values.
The current study was a first step in identifying factors that bias patient-by-proxy HRQoL assessments. It was discovered that caregivers project part of their own HRQoL onto patients when assessing patient HRQoL. This implies that patient-by-proxy HRQoL values should be interpreted with caution and not be used as a direct substitute for patient self-assessment, even when patients are no longer able meaningfully assess themselves.
To explore the association between risk of malnutrition as well as current body mass index (BMI) and health-related quality of life (HRQoL) in elderly men and women from the general population.
In a cross-sectional population survey including 1,632 men and 1,654 women aged 65 to 87 years from the municipality of Tromsø, Norway, we assessed HRQoL by using the EuroQol (EQ-5D) instrument in three risk groups of malnutrition and in different categories of BMI. The Malnutrition Universal Screening Tool (‘MUST’) was used to evaluate the risk of malnutrition.
We found a significant reduction in HRQoL with an increasing risk of malnutrition, and this was more pronounced in men than in women. The relationship between BMI and HRQoL was dome shaped, with the highest score values in the BMI category being 25–27.5 kg/m2.
HRQoL was significantly reduced in elderly men and women at risk of malnutrition. The highest HRQoL was seen in moderately overweight individuals.
HRQoL; EQ-5D; Body mass index; Elderly; Malnutrition universal screening tool; Nutrition assessment
To apply a scaled, preference-based measure to the evaluation of health-related quality of life (HRQoL) in Parkinson's disease (PD); to evaluate the relationship between disease-specific rating scales and estimated HRQoL; and to identify predictors of diminished HRQoL.
Scaled, preference-based measures of HRQoL ("utilities") serve as indices of impact of disease, and can be used to generate quality-adjusted estimates of survival for health-economic evaluations. Evaluation of utilities for PD and their correlation with standard rating scales have been limited.
Utilities were generated using the Health Utilities Index Mark III (HUI-III) on consecutive patients attending a PD Clinic between October 2003 and June 2006. Disease severity, medical, surgical (subthalamic nucleus deep brain stimulation (STN-DBS)), and demographic information were used as model covariates. Predictors of HUI-III utility scores were evaluated using the Wilxocon rank-sum test and linear regression models.
68 men with a diagnosis of PD and a mean age of 74.0 (SD 7.4) were included in the data analysis. Mean HUI-III utility at first visit was 0.45 (SD 0.33). In multivariable models, UPDRS-II score (r2 = 0.56, P < 0.001) was highly predictive of HRQoL. UPDRS-III was a weaker, but still significant, predictor of utility scores, even after adjustment for UPDRS-II (P = 0.01).
Poor self-care in PD reflected by worsening UPDRS-II scores is strongly correlated with low generic HRQoL. HUI-III-based health utilities display convergent validity with the UPDRS-II. These findings highlight the importance of measures of independence as determinants of HRQoL in PD, and will facilitate the utilization of existing UPDRS data into economic analyses of PD therapies.
Introduction. Cancer is a major disorder physically and psychologically affecting both patients and their caregivers. In this study, health-related quality of life (HRQoL) of patient-caregiver dyads during the period of chemotherapy was assessed. Material and Methods. Two hundred twenty-two cancer patient-caregiver dyads were enrolled in the study, which was conducted from October 2008 to March 2009. HRQoL was evaluated with EQ-5D. Results. The mean age of the sample was 57.4 and 48.9 for patients and caregivers, respectively. The EQ-5D descriptive system indicates that female patients more frequently experience anxiety and depression than male patients. Male and higher-education caregivers had higher VAS scores, while demographic factors did not seem to influence patients' HRQoL. Anxiety and depression of caregivers were correlated with patients' problems in self-care and usual activities. Conclusions. Quality of life is highly influenced during the period of chemotherapy for both patients and caregivers and is often under reported. Interventions that can improve HRQoL, especially in the domain of mental health for both cancer patients and their caregivers, need to be implemented.
Relatively few attempts to measure the effects on the health-related quality of life (HRQoL) of informal caregivers within the context of economic evaluations have been reported. This paper is an exploratory attempt to find suitable methods to assess caregivers’ HRQoL, using a population of parents of children with major congenital anomalies.
A total of 306 parents of children born with either congenital anorectal malformations (ARM) or congenital diaphragmatic hernia were surveyed. They rated their current HRQoL on the EQ-VAS. After that, they rated their HRQoL again on the assumption that someone would take over their caregiving activities completely and free of charge. Finally, the parents classified their HRQoL on the EQ-5D. The caregivers’ scores on the EQ-VAS and the EQ-5D were compared with scores elicited in the general population.
Most parents indicated that their HRQoL would not change if someone else took on their caregiving activities. Some methodological issues may have influenced this outcome, such as difficulties in self-assessing HRQoL changes due to caregiving, process utility, protest answers, and difficulties in understanding the hypothetical question. The HRQoL of the parents was relatively low compared with population statistics, especially in the parents of children with ARM and in mothers. This can be illustrated by the difference between the mean EQ-5D score of the mothers aged 25–34 years of the children with ARM and that of the general population (0.83 vs. 0.93; P = 0.002).
Significant HRQoL differences exist between parents caring for children with congenital anomalies and the general population. It would be useful to further improve our understanding of the HRQoL impact of informal caregiving, separating ‘caregiving effects’ from ‘family effects’, and distinguishing parent–child relationships from other caregiving situations. This study underlines the importance of considering caregivers, also in the context of economic evaluations. It indicates that general HRQoL measures, as used in patients, may be able to detect HRQoL effects in caregivers, which facilitates the incorporation in common economic evaluations of HRQoL effects in carers. Analysts and policy makers should be aware that if HRQoL improvement is an important aim, they should register HRQoL changes not only in patients but also in their caregivers.
Economic evaluation; Valuation of informal care; Methodology; Quality of life; Neonatal surgery
Objectives: To test the validity and feasibility of the generic 15D health related quality of life (HRQoL) instrument in Parkinson's disease (PD) and compare parkinsonian patients with the general population. Much effort has gone into developing disease specific HRQoL measures for PD, but only generic measures allow comparisons with the general population. New HRQoL tools are needed for PD because earlier ones have low feasibility in elderly patients.
Methods: The study comprised 260 patients with idiopathic PD and age and sex matched controls. HRQoL was evaluated using the disease specific questionnaire PDQ-39 and the 15D generic instrument. PD severity was assessed by Hoehn and Yahr staging, and the activities of daily living (ADL) and motor section of the Unified Parkinson's Disease Rating Scale (UPDRS).
Results: The mean 15D score (scale 0–1; overall HRQoL) was lower in PD (0.77) than in controls (0.86). Patients with PD had significantly lower scores than controls in 13 of the 15 dimensions of 15D. Scores of the corresponding dimensions of PDQ-39 and 15D correlated significantly, confirming the convergent validity of 15D. In multiple stepwise regression analysis, the UPDRS ADL score explained 55% of the variation in the 15D score.
Conclusions: 15D is a valid, feasible, and sensitive tool to assess quality of life in PD. PD has a major impact on HRQoL, which is related to disease progression. Mobility, eating, speech, and sexual functions are most affected. The ADL measure of the UPDRS and the 15D provide an easily assessable view of HRQoL in PD.
Health Related Quality of Life (HRQoL) is an important outcome in times of Highly Active Antiretroviral Treatment (HAART). We compared the HRQoL of HIV positive patients receiving HAART with those awaiting treatment in public sector facilities in the Free State province in South Africa.
A stratified random sample of 371 patients receiving or awaiting HAART were interviewed and the EuroQol-profile, EuroQol-index and Visual Analogue Scale (VAS) were compared. Independent associations between these outcomes and HAART, socio-demographic, clinical and health service variables were estimated using linear and ordinal logistic regression, adjusted for intra-clinic clustering of outcomes.
Patients receiving HAART reported better HRQoL for 3 of the 5 EuroQol-dimensions, for the VAS score and for the EuroQol index in bivariable analysis. They had a higher mean EuroQol index (0.11 difference, 95% confidence interval [CI] 0.04; 0.23), and were more likely to have a higher index (odds ratio 1.9, 95% CI 1.1; 1.3), compared to those awaiting HAART, in multivariate analysis. Higher mean VAS scores were reported for patients who were receiving HAART (6.5 difference, 95% CI 1.3; 11.7), were employed (9.1, 95% CI 4.3; 13.7) or were female (4.7, 95% CI 0.79; 8.5).
HAART was associated with improved HRQoL in patients enrolled in a public sector treatment program in South Africa. Our finding that the EuroQol instrument was sensitive to HAART supports its use in future evaluation of HIV/AIDS care in South Africa. Longitudinal studies are needed to evaluate changes in individuals' HRQoL.
To design effective interventions that improve cancer survivors’ health-related quality of life (HRQoL), it is necessary to understand how HRQoL is related to cancer cognitions and interpersonal/social factors
This study investigated whether perceived risk of recurrence is associated with HRQoL and whether trust in the follow-up care physician moderates the perceived risk/HRQoL relationship.
A cross-sectional survey of cancer survivors (N=408).
Higher perceived risk was associated with worse mental and physical HRQoL. Higher trust was associated with better mental (but not physical) HRQoL. The inverse association between perceived risk and mental HRQoL was eliminated among those with high trust in their physicians. Trust did not moderate the perceived risk/physical HRQoL relationship.
Addressing survivors’ perceived risk of recurrence and improving the provider-patient relationship may enhance interventions to improve mental HRQoL among cancer survivors. However, the causal relationships among the constructs should be explicated.
Perceived risk; Trust; Health-Related Quality of Life; Cancer survivors; Fear of recurrence
The quality of life (QoL) of informal caregivers can be adversely affected by a number of factors. This issue, however, has not been well explored for carers of people with Parkinson's (PwP), with research largely restricted to the assessment of caregiver burden and caregiver strain. This study aims to determine the main influences on carer QoL in this population and consider results in the context of current clinical guidelines for the management of Parkinson's disease (PD). Carers completed the newly validated PDQ-Carer, and PwP completed the PDQ-39. The sample comprised 238 carers (mean age 68.20 years) and 238 PwP (mean age 71.64). Results suggest multiple influences on caregiver QoL. These include carer age, gender, health status, and duration of the caregiving role. PwP levels of mobility and cognitive impairment are also significant influences on carer QoL. Not only should practitioners and service providers be particularly aware of the heightened impact of PD on carers over time and as PwP symptoms deteriorate, but this should also be reflected in clinical guidelines for the management of PD.
Objective To demonstrate the use of the actor–partner interdependence model (APIM) of dyadic relationships in a sample of children with cystic fibrosis (CF) and their caregivers. Methods Multilevel modeling evaluated relations between health-related quality of life (HRQOL) and anxiety in 29 child–caregiver dyads. The following effects were evaluated: actor and partner, and the respondent (i.e., child or caregiver) × HRQOL interaction. Results This study demonstrated a practical application of the APIM. Significant actor effects were found (i.e., lower child HRQOL was associated with increased child anxiety, caregiver anxiety increased as caregiver perceptions of their child's HRQOL decreased), but not partner effects. The significant interaction indicated that the effects were different for children and caregivers. Conclusions The APIM has the potential to increase pediatric researchers’ understanding of how social relationships and environments impact health outcomes. Future research should consider using dyadic data analysis when youth and caregiver data are available.
anxiety; cystic fibrosis; quality of life; statistical applications
Preference-weighted health-related quality-of-life (HRQoL) indexes produce a summary score from discrete health states determined by questions falling into several attributes, such as pain and mobility. Values of HRQoL are used alongside other health outcomes to monitor the health of populations.
The purpose of this study was to examine among US adults, the underlying factor structure of HRQoL attribute scores across 5 indexes of HRQoL: EuroQol-5 Dimension, Health Utilities Index Mark 2, Health Utilities Index Mark 3, Short Form-6 Dimension, and Quality of Well-Being Scale Self-Administered form.
The National Health Measurement Study surveyed a nationally representative sample of 3844 noninstitutionalized adults aged 35 to 89 years residing in the continental US. Simultaneous data on all 5 indexes were collected cross-sectionally from June 2005 to August 2006. Exploration of underlying dimensions of HRQoL was done by categorical exploratory factor analysis of HRQoL indexes' attribute scores. Item response theory was applied to explore the amount of information HRQoL attributes contribute to the underlying latent dimensions.
Three main dimensions of HRQoL emerged: physical, psychosocial, and pain. Most HRQoL index attributes contributed to the physical or psychosocial dimension. The 3 dimensions were correlated: 0.47 (physical and psychosocial), 0.57 (physical and pain), 0.46 (psychosocial and pain). Some HRQoL index attributes displayed relatively more unique variance: HUI3 hearing, speech, and vision, and some contributed to more than 1 dimension The identified factor structure fit the HRQoL data well (Comparative Fit Index = 0.98, Tucker-Lewis Index = 0.98, and Root Mean Square Error of Approximation = 0.042).
The attributes of 5 commonly used HRQoL indexes share 3 underlying latent dimensions of HRQoL, physical, psychosocial, and pain.
health-related quality-of-life; patient reported outcomes; factor analysis; item response theory; health dimensions; EQ-5D; HUI2; HUI3; SF-6D; QWB-SA
Among injury victims relatively high prevalence rates of posttraumatic stress disorder (PTSD) have been found. PTSD is associated with functional impairments and decreased health-related quality of life (HRQoL). Previous studies that addressed the latter were restricted to injuries at the higher end of the severity spectrum. This study examined the association between PTSD symptoms and health-related quality of life (HRQoL) in a comprehensive population of injury patients of all severity levels and external causes.
We conducted a self-assessment survey which included items regarding demographics of the patient, accident type, sustained injuries, EuroQol health classification system (EQ-5D) and Health Utilities Index (HUI) to measure functional outcome and HRQoL, and the Impact of Event Scale (IES) to measure PTSD symptoms. An IES-score of 35 or higher was used as indication for the presence of PTSD. The survey was completed by 1,781 injury patients two years after they were treated at the Emergency Department (ED), followed by either hospital admission or direct discharge to the home environment.
Symptoms indicative of PTSD were associated with more problems on all EQ-5D and HUI3 domains of functional outcome and a considerable utility loss in both hospitalized (0.23-0.24) and non-hospitalized (0.32-0.33) patients. Differences in reported problems between patients with IES scores higher or lower than 35 were largest for EQ-5D health domains pain/discomfort (82% versus 28%) and anxiety/depression (53% versus 11%) and HUI domains emotion (92% versus 33%) and pain (84% versus 38%). After adjusting for potential confounders, PTSD remained strongly associated with adverse HRQoL.
Among patients treated at an ED posttraumatic stress symptoms indicative of PTSD were associated with a considerable decrease in HRQoL in both hospitalized and non-hospitalized patients. PTSD symptoms may therefore raise a major barrier for full recovery of injury patients of even minor levels of severity.
posttraumatic stress disorder; injury; functional outcome; quality of life
Index measures for health-related quality of life (HRQoL) quantify the desirability (utility) of a certain health state. The commonly used generic index measure, e.g. EuroQol: EQ-5D, may underestimate relevant areas of specific diseases, resulting in lower validity. Disease-specific index measures on the other hand combine disease-specificity and quantification of perceived quality on several health domains of a certain disease into one single figure. These instruments have been developed for several diseases, but a dementia-specific HRQoL index instrument was not yet available. Facing the increasing individual and societal burden of dementia, specific HRQoL values with metric characteristics are especially useful because they will provide vital information for health outcome research and economic evaluations.
Aims of the study
To develop and validate the prototype of a dementia-specific HRQoL index measure: Dementia Quality of life Instrument (DQI), as the first step towards valuation of the dementia health state.
For development of the DQI we created a conceptual framework based on a review of the literature, qualitative interviews with people with dementia and their carers, expert opinion and team discussion. To assess validity we undertook a survey under 241 dementia professionals. Measurements consisted of ranking (1–5) and rating (1–10) of 5 dementia-specific DQI domains (memory, orientation, independence, social activities and mood) and simultaneously rating of 9 DQI-derived health states on a visual analogue scale (VAS). We also performed a cross-sectional study in a large sample of people with very mild to moderate dementia and their caregivers (N = 145) to assess feasibility and concurrent validity. In addition, caregivers valued 10 DQI and 10 EQ-5D + C derived health states of the patient simultaneously on the same VAS. Setting: outpatient clinics, nursing homes and patient residences.
All professionals judged the selected DQI domains to be relevant. Differences in ranking and rating behaviors were small. Mood was ranked (≥3.3) and rated (≥8.2) as most, orientation as least important (rank ≤2.6, value 7.5) health domain for dementia. For the validation part of this study the completion rates for all domains were above 98% for patients and 100% for caregivers on patients. A priori hypothesized DQI versus QOL-AD correlations that were significant in both patients and caregivers were: memory/memory, orientation/memory, independence/physical health, social activities/energy and mood/mood. Patient/caregiver inter-rater agreement was low (K < 0.2) for memory/independence, fair (K 0.2-0.4) for orientation/mood, and moderate (K 0.4-0.6) for social activities. Concurrent validity of the DQI with the EQ-5D + C was moderate. The fact that most of the correlations between the domains of these two instruments were low (≤0.40) showed that both instruments measure different elements of health status. As expected, modest correlations (≥0.40) were observed between corresponding domains of the two instruments.
Professionals judged all domains as relevant. The DQI prototype proved valid and feasible for patients and caregivers and is appropriate for very mild to moderate dementia. The differences in concurrent correlations with generic health status instruments imply that the dementia-specific DQI health domains indeed provide different information. The finding that patient HRQoL measured with the DQI was lower supports this notion. The new DQI shows comparable psychometric properties to the best available dementia-specific (QOL-AD) and generic (EQ-5D + C) measures. Further research is needed to generate values in the general population for each of the possible DQI states and to derive an algorithm that converts the 5 separate DQI domain scores into one single DQI Index score. Introducing the DQI Index will advance dementia-related HRQoL measurement by overcoming the shortcomings of generic and non-index instruments. This will allow more unequivocal interpretation of subjective dementia HRQoL states in dementia research.
Dementia; Health-related quality of life; Dementia Quality of life Instrument (DQI); Disease-specific index instrument; Cost-effectiveness
To evaluate the impact of health-related quality of life (HRQoL) enfuvirtide-based (ENF-based) salvage regimens of treatment-experienced HIV patients, in an observational multicenter cohort study.
HRQoL was measured in a cohort of 16 patients over a 6-month follow-up using 2 instruments: the ISSQoL (Istituto Superiore di Sanità Quality of Life), a recently validated HIV-specific questionnaire; the EQ-5D (EuroQol), a generic widely used instrument. ENF was given at standard dosage along with an optimized background regimen.
Most of HRQoL dimensions showed improvement in ENF-treated patients at the post-baseline time points. Social functioning was the only dimension showing a negative effect. Monthly care costs of antiretroviral drugs for HIV patients taking ENF plus an optimized background regimen were approximately €2,348 per patient-month (range €382–€2,940).
Our results show that the addition of ENF to an optimized background salvage-HAART may positively affect HRQoL not only in clinical trials but also in a sample population of patients used in a routine clinical practice.
enfuvirtide; HRQoL; HIV
Health-related quality of life (HRQoL) remains poor among heroin users, even after being treated with methadone. Evidence regarding self-reported psychopathology and HRQoL in heroin users is also limited. The present study aimed to investigate the association between self-reported psychopathology and HRQoL in Asian heroin users treated with methadone.
Thirty-nine heroin users treated with methadone and 39 healthy controls were recruited. Both groups self-reported on demographic data, the Brief Symptom Rating Scale, EuroQoL-5D, and World Health Organization Questionnaire on Quality of Life: Short Form. We compared clinical characteristics, psychopathology, and HRQoL between the two study groups. Correlation and regression analyses were conducted to explore the association between psychopathology and HRQoL in the heroin user group.
Heroin users had more psychopathology and worse HRQoL than healthy controls. The HRQoL of heroin users had significant correlations with Brief Symptom Rating Scale scores. HRQoL could be predicted by depression, anxiety, paranoia, and additional symptoms (ie, poor appetite and sleep difficulties) independently.
Self-reported psychopathology, depression, anxiety, paranoia, poor appetite, and sleep difficulties had a negative impact on each domain of HRQoL among heroin users treated with methadone. The importance of the environmental domain of HRQoL is discussed. Clinicians should recognize comorbid psychiatric symptoms early on to improve HRQoL in heroin users.
heroin abuse; Brief Symptom Rating Scale; World Health Organization questionnaire on quality of life
In lung cancer CT screening, participants often have an indeterminate screening result at baseline requiring a follow-up CT. In subjects with either an indeterminate or a negative result after screening, we investigated whether health-related quality of life (HRQoL) changed over time and differed between groups in the short term.
A total of 733 participants in the NELSON trial received four questionnaires: T0, before randomisation; T1, 1 week before the baseline screening; T2, 1 day after the screening; and T3, 2 months after the screening results but before the 3-month follow-up CT. HRQoL was measured as generic HRQoL (the 12-item Short Form, SF-12; the EuroQol questionnaire, EQ-5D), anxiety (the Spielberger State-Trait Anxiety Inventory, STAI-6), and lung-cancer-specific distress (the Impact of Event Scale, IES). For analyses, repeated-measures analysis of variance was used, adjusted for covariates.
Response to each questionnaire was 88% or higher. Scores on SF-12, EQ-5D, and STAI-6 showed no clinically relevant changes over time. At T3, IES scores that were clinically relevant increased after an indeterminate result, whereas these scores showed a significant decrease after a negative result. At T3, differences in IES scores between the two baseline result groups were both significant and clinically relevant (P<0.01).
This longitudinal study among participants of a lung cancer screening programme showed that in the short term recipients of an indeterminate result experienced increased lung-cancer-specific distress, whereas the HRQoL changes after a negative baseline screening result may be interpreted as a relief.
lung neoplasms; mass screening; quality of life; spiral computed tomography
The co-occurance of multiple medical conditions has a negative impact on health related quality of life (HRQoL) for patients with type 2 diabetes. These patients demand for intensified care programs. Participation in a disease management program (DMP) for type 2 diabetes has shown to counterbalance this effect. However, it remains unclear which dimensions of HRQoL are influenced by the DMP. The aim of this study was to explore the HRQoL dimensions of patients with type 2 diabetes in the German DMP and patients in routine care (RC).
This analysis is part of a comparative evaluation of the German DMP for patients with type 2 diabetes. A questionnaire, including the HRQoL measure EQ-5D, was mailed to a random sample of 3,546 patients with type 2 diabetes (59.3% female). The EQ-5D dimensions were analyzed by grouping patients according to their participation in the German DMP for diabetes into DMP and RC.
Compared to patients in DMP, patients in RC reported more problems for the dimensions mobility (P < 0.05), self care (P < 0.05) and performing usual activities (P < 0.01). Depending on the number of other conditions, remarkable differences for reporting "no problems" exist for patients with six or more comorbid conditions regarding the dimensions mobility (RC = 8.7%, DMP = 32.3%), self care (RC = 43.5%, DMP = 64.5%), usual activities (RC = 13.0%, DMP = 33.9%) and anxiety or depression (RC = 37.0%, DMP = 48.4%).
Patients participating in the German DMP for type 2 diabetes mellitus show significantly higher ratings of their HRQoL in the dimensions mobility, self care and performing usual activities compared to patients in RC. This difference can also be observed in patients with significant comorbidities. As these dimensions are known to be essential for diabetes care, the German DMP may contribute to improved care even for comorbid diabetes patients.
Parkinson disease (PD) reduces health-related quality of life (HRQoL), but exercise may improve HRQoL. This pilot study compared the effects of Tango, Waltz/Foxtrot, Tai Chi and No Intervention on HRQoL in individuals with PD. Seventy-five persons with PD (Hoehn and Yahr I-III) were assigned to twenty lessons of Tango, Waltz/Foxtrot, Tai Chi, or an untreated No Intervention group. Participants completed the PDQ-39 before and after participation in 20 classes or within thirteen weeks in the case of the No Intervention group. Two-way repeated measures ANOVAs determined differences between interventions. Tango significantly improved on Mobility (p = 0.03), Social Support (p = 0.05) and the PDQ-39 SI (p < 0.01) at post-testing. No significant changes in HRQoL were noted in the Waltz/Foxtrot, Tai Chi or No Intervention. Tango may be helpful for improving HRQoL in PD because it addresses balance and gait deficits in the context of a social interaction that requires working closely with a partner.
Parkinson disease; quality of life; PDQ-39; exercise; dance
Low health-related quality of life (HRQoL) of children with sickle cell disease (SCD) may be associated with consequences of the disease, or with the low socio-economic status (SES) of this patient population. The aim of this study was to investigate the HRQoL of children with SCD, controlling for SES by comparing them to healthy siblings (matched for age and gender), and to a Dutch norm population.
The HRQoL of 40 children with homozygous SCD and 36 healthy siblings was evaluated by the KIDSCREEN-52. This self-report questionnaire assesses ten domains of HRQoL. Differences between children with SCD and healthy siblings were analyzed using linear mixed models. One-sample t-tests were used to analyze differences with the Dutch norm population. Furthermore, the proportion of children with SCD with impaired HRQoL was evaluated.
In general, the HRQoL of children with SCD appeared comparable to the HRQoL of healthy siblings, while children with SCD had worse HRQoL than the Dutch norm population on five domains (Physical Well-being, Moods & Emotions, Autonomy, Parent Relation, and Financial Resources). Healthy siblings had worse HRQoL than the Dutch norm population on three domains (Moods & Emotions, Parent Relation, and Financial Resources). More than one in three children with SCD and healthy siblings had impaired HRQoL on several domains.
These findings imply that reduced HRQoL in children with SCD is mainly related to the low SES of this patient population, with the exception of disease specific effects on the physical and autonomy domain. We conclude that children with SCD are especially vulnerable compared to other patient populations, and have special health care needs.
In this review report, current possibilities of evaluation of quality of life in Parkinson’s disease have been critically presented. Health Related Quality of Life (-HRQoL) comprises a wide spectrum of consequences of the disease. Measurement of quality of life has become increasingly relevant as an outcome parameter, especially in long-term trials. Most of the available QoL instruments depend on patient self-reports. The data can be collected by written questionnaires. There are universal questionnaires of QoL – for many diseases and the specific ones – specially created for one disease. Among universal questionnaires, the Sickness Impact Profile (SIP) and the Short-Form Health Status Survey (SF-36) are the most popular in Parkinson’s disease. As for specific questionnaires: the Parkinson`s Disease Questionnaire (PDQ-39) and the Parkinson`s Disease Quality of Life Questionnaire (PDQL) have been described.
amelioration; disability; fatigue; Parkinson`s Disease; Quality of Life
The aim of this study was to measure health-related quality of life (HRQoL) in Iranian people with Type 2 Diabetes Mellitus using two different measures and examines which socio-demographic and diabetes-related characteristics are associated with better quality of life based on a nationally distributed sample.
A multi-stage cluster sampling method was used to select 3472 subjects as a part of Iranian surveillance of risk factors of non-communicable disease (ISRFNCD). EuroQol-5 Dimensions questionnaire (EQ-5D) and Visual Analog Scale (VAS) were employed to measure HRQoL. Binary logistic and Tobit regression models were used to investigate factors associated with EQ-5D results.
The mean age of subjects was 59.4 years (SD = 11.7), 61.3% were female and had 8.08 years (SD = 6.7) known duration of diabetes. The patients reported “some or extreme problems” most frequently in Pain/Discomfort (69.3%) and Anxiety/Depression (56.6%) dimensions of EQ-5D. The mean EQ-5D and VAS score were 0.70 (95% CI 0.69–0.71) and 56.8 (95% CI 56.15–57.5) respectively. Female gender, lower education, unemployment, long duration of diabetes, diabetes-related hospitalization in past years and having nephropathy and lower extremity lesions were associated with higher probabilities of reporting “some or extreme problems” in most dimensions of EQ-5D in binary logistic regression models. The same factors in addition to retinopathy were significantly associated with lower levels of HRQoL in Tobit regression analysis too.
The study findings indicate that patients with diabetes in Iran suffer from relatively poor HRQoL. Therefore much more attention should be paid to main determinants of HRQoL to identify and implement appropriate policies for achieving better management of diabetes and ultimately improving the quality of life of diabetic patients in this region.
Objective To document and identify predictors of caregiver health-related quality of life (HRQOL) in a sample of youth seeking obesity treatment and examine whether it moderates the relation between parent proxy and youth self-report HRQOL. Methods Youth (5–18 years) and their caregivers (N = 120) presenting to a pediatric medical weight management program completed the Pediatric Quality of Life Inventory™ and caregivers completed the Short-Form 36. Results Caregivers were predominantly overweight/obese (90%) and half were African-American. Caregiver HRQOL was lower than “healthy” adults, similar to nontreatment-seeking adults with obesity, and better than treatment-seeking adults with obesity. Caregiver body mass index and socioeconomic status predicted caregiver physical HRQOL. Caregiver age predicted caregiver mental HRQOL. A moderation effect was not detected. Conclusions Given the significant degree of overweight and HRQOL impairment in caregivers of youth seeking obesity treatment, further examination of caregiver functioning in the context of pediatric obesity treatment outcomes is warranted.
biased reporting; overweight; obesigenic environment; parent proxy
To document and identify predictors of caregiver health-related quality of life (HRQOL) in a sample of youth seeking obesity treatment and examine whether it moderates the relation between parent-proxy and youth self-report HRQOL.
Youth (5-18 years) and their caregivers (N = 120) presenting to a pediatric medical weight management program completed the Pediatric Quality of Life Inventory™ and caregivers completed the Short-Form 36.
Caregivers were predominantly overweight/obese (90%) and half were African-American. Caregiver HRQOL was lower than “healthy” adults, similar to non-treatment-seeking adults with obesity, and better than treatment-seeking adults with obesity. Caregiver body mass index and socioeconomic status predicted caregiver physical HRQOL. Caregiver age predicted caregiver mental HRQOL. A moderation effect was not detected.
Given the significant degree of overweight and HRQOL impairment in caregivers of youth seeking obesity treatment, further examination of caregiver functioning in the context of pediatric obesity treatment outcomes is warranted.
parent-proxy; biased reporting; overweight; obesigenic environment
There is paucity of data concerning the self-perceptions of health status and health-related quality of life (HRQoL) of veterans with multiple chronic medical conditions.
Veterans who attended an out-patient power wheelchair clinic at a tertiary VA Medical Center were assessed. Health status and HRQoL were measured by using the EuroQol (EQ-5D) questionnaire. The EuroQol (ED-5D) visual analogue scale (EQ-5DVAS) measured their health state, and average values of the (EQ-5D) questionnaire for mobility, self-care, usual activities, pain or discomfort, and anxiety or depression (EQ-5Dprofile), and the EQ-5Dutility measured their HRQoL.
Of the 170 veterans who attended the out-patient clinic, the mean (±SD) age was 69.6±10.7 years, male/female ratio was 163/7, and 88% were non-Hispanic whites. Fifty-four percent were retired, 39% had a registered disabled, and only 3% were employed. Thirty-three percent were current smokers. More than 64% of the veterans had 4 or more co-morbid conditions for which they were receiving treatment. The mean (±SD) initial EQ-5Dprofile, EQ-5Dutility, and EQ-5DVAS scores were 10.3±1.5, 0.75±0.05 and 45.3±18.9, respectively. The social-demographic variables studied (age, gender, education, marital status, employment, co-morbid conditions, and current smoking history) were only able to predict the mobility and anxiety/depression domains of the EQ-5D.
Veterans who considered themselves disabled had multiple chronic medical conditions. Age, employment state, and number of chronic medical conditions were associated with poor health state and HRQoL. No relationship was found between health state and HRQoL in this sample of veterans.
veterans; health state; quality of life; health care; health care initiatives; out-patient clinic; EuroQol questionnaire; co-morbidities; observation
This study aimed to collect information that will help enhance the social networks and improve the quality of life among elderly people by observing the relationship between their social network and health-related quality of life (HRQoL) and by analyzing social network factors affecting HRQoL.
This study was based on the 2008 Community Health Survey in Yeoncheon County. Three hundred elders were included in the study population. We compared the revised Lubben Social Network Scale (LSNS-R) score and Euro quality of life-5 dimensions health status index by demographic characteristics and chronic disease prevalence. We analyzed the data using multiple regression and tobit regression by setting the HRQoL as the dependent variable and social network and other characteristics as the independent variables. We analyzed social network factors by using factor analysis.
The LSNS-R score differed significantly according to age and existence of a spouse. According to the results from the hierarchical multiple regression analysis, the LSNS-R explained 0.10 of the variance and LSNS-R friends factor explained 0.10 of the variance. The tobit regression indicated that the contribution of the LSNS-R family size factor to the regression coefficient of the independent variable that affected the HRQoL was BT=2.96, that of the LSNS-R family frequency factor was BT=3.60, and that of LSNS-R friends factor was BT=5.41.
Social networks among elderly people had a significant effect on HRQoL and their networks of friends had a relatively higher effect than those of family members.
Social network; Health; Quality of life; Aged