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1.  A cross sectional assessment of health related quality of life among patients with Hepatitis-B in Pakistan 
The study aims to assess Health Related Quality of Life (HRQoL) among Hepatitis B (HB) patients and to identify significant predictors of the HRQoL in HB patients of Quetta, Pakistan.
A cross sectional study by adopting European Quality of Life scale (EQ-5D) for the assessment of HRQoL was conducted. All registered HB patients attending two public hospitals in Quetta, Pakistan were approached for study. Descriptive statistics were used to describe demographic and disease related characteristics of the patients. HRQoL was scored using values adapted from the United Kingdom general population survey. EQ-5D scale scores were compared with Mann–Whitney and Kruskal-Wallis test. Standard multiple regression analysis was performed to identify predictors of HRQoL. All analyses were performed using SPSS v 16.0.
Three hundred and ninety HB patients were enrolled in the study. Majority of the participants (n = 126, 32.3%) were categorized in the age group of 18-27 years (36.07 ± 9.23). HRQoL was measured as poor in the current study patients (0.3498 ± 0.31785). The multivariate analysis revealed a significant model (F10, 380 = 40.04, P < 0.001, adjusted r2 = 0.401). Educational level (β = 0.399, p = 0.025) emerged as a positive predictor of HRQoL. Age, gender, occupation, income and locality were not predictive of better quality of life in HB patients.
Hepatitis B has an adverse affect on patients’ well-being and over all HRQoL. The study findings implicate the need of health promotion among HB patients. Improving the educational status and imparting disease related information for the local population can results in better control and management of HB.
PMCID: PMC3480955  PMID: 22866752
Health Related Quality of Life; Hepatitis B; Euroqol EQ-5D; Pakistan
2.  Impact of urinary incontinence on health-related quality of life, daily activities, and healthcare resource utilization in patients with neurogenic detrusor overactivity 
BMC Neurology  2014;14:74.
Neurogenic detrusor overactivity (NDO) leads to impaired health-related quality of life (HRQoL), productivity, and greater healthcare resource burden. The humanistic and economic burden may be more apparent in NDO patients with urinary incontinence (UI). The objective of this study was to compare the HRQoL, productivity, and health resource use (HRU) between continent and incontinent NDO patients.
A retrospective database analysis was conducted using the Adelphi Overactive Bladder (OAB)/UI Disease Specific Programme, a multi-national, cross-sectional survey reported from both patients’ and physicians’ perspectives. The population for this analysis included NDO patients with or without UI. General and disease-specific HRQoL were assessed using the EuroQoL-5D (EQ-5D), Incontinence Quality of Life questionnaire (I-QOL), and the Overactive Bladder Questionnaire (OAB-q). Productivity and daily activity impairment were measured using the Work Productivity and Activity Impairment (WPAI) questionnaire. HRU indicators included OAB-related surgery, OAB-related hospitalizations, incontinence pad usage, switching anticholinergics used for OAB due to inadequate response or adverse effects, and OAB-related physician visits. Bivariate analyses, multivariate ordinary least squares (OLS) regression analyses and published minimal clinically important differences (MCID) were used to assess relationships between incontinent status and the aforementioned outcome measures.
A total of 324 NDO patients with or without urinary incontinence were included, averaging 54 years of age (SD 16), of whom 43.8 percent were male. Bivariate analyses detected no significant relationship between incontinent status and HRU variables. Regression analyses revealed that incontinent patients had clinically and statistically lower disease-specific HRQoL and greater impairment in daily activities as compared to continent patients. On average, incontinent patients scored 10 points lower on the I-QOL total score, 9 points lower on the OAB-q HRQoL score, 15 points higher on OAB-q symptom severity, and experienced 8.2 percent higher activity impairment due to their bladder condition (all p < 0.001).
Incontinent NDO patients experience significantly lower HRQoL and activity impairment as compared to continent NDO patients.
PMCID: PMC3984584  PMID: 24708598
Neurogenic detrusor overactivity; Incontinence; Burden of illness; Quality of life; Productivity
3.  Measuring Quality of Life in Pediatric Patients With Inflammatory Bowel Disease: Psychometric and Clinical Characteristics 
To extend development of a pediatric inflammatory bowel disease (IBD) health-related quality of life (HRQoL) measure by determining its factor structure and associations of factors with generic HRQoL measures and clinical variables.
Patients and Methods
Cross-sectional survey of children and adolescents ages 8 years to 18 years and their parents attending any of 6 US IBD centers, recruited from either existing registry of age-eligible subjects or visits to participating centers. The survey included generic (Pediatric Quality of Life Inventory) and IBD-specific (Impact Questionnaire) quality of life measures, disease activity, and other clinical indicators. We carried out factor analysis of Impact responses, comparing resulting factors with results on the generic HRQoL and the clinical measures.
We included 220 subjects (161 with Crohn disease and 59 with ulcerative colitis). Initial confirmatory factor analysis did not support the 6 proposed Impact domains. Exploratory factor analysis indicated 4 factors with good to excellent reliability for IBD responses: general well-being and symptoms, emotional functioning, social interactions, and body image. Two items did not load well on any factor. The 4 factors correlated well with the Pediatric Quality of Life Inventory and subscales. Children with higher disease activity scores and other indicators of clinical activity reported lower HRQoL.
This study provides further characteristics of a HRQoL measure specific to pediatric IBD and indicates ways to score the measure based on the resulting factor structure. The measure correlates appropriately with generic HRQoL measures and clinical severity indicators.
PMCID: PMC3065353  PMID: 18223375
Crohn disease; Ulcerative colitis; Well-being; Disease activity; Functional status
4.  Impact of cancer occurrence on health-related quality of life: A longitudinal pre-post assessment 
Investigations focusing and implementing on the impact of cancer on health-related quality of life (HRQoL) by the way of a mean comparison between cancer patients and subjects from the general population, are scarce and usually cross-sectional. Longitudinal application of HRQoL instruments to a general, initially healthy population allows for change to be assessed as an event occurs, rather than afterwards. The objective of the present study was to investigate the impact of new cancer on HRQoL.
The 36-item Short Form (SF-36) and 12-item General Health Questionnaire (GHQ-12) were applied to the French SU.VI.MAX cohort in 1996 and 1998. A controlled longitudinal study was used to determine the impact on HRQoL of newly diagnosed cancer: 84 patients with cancer that occurred between the 2 HRQoL measures were compared with 420 age- and sex-matched cancer-free controls.
Initial HRQoL level was similar in the two groups. A new cancer had a particularly marked effect on the SF-36 Physical functioning, Role-physical and General health dimensions (more than 6.6-point difference in change in HRQoL evolution on a 0–100 scale). The Bodily pain and Vitality dimensions were less severely affected (difference in change varying from 4.4 to 6.3 points), and there was no effect on either the GHQ-12 score or the SF-36 Mental health, Role-emotional and Social functioning dimensions.
The negative impact of cancer on the lives of patients was assessed in terms of HRQoL. The aspects most likely to be affected were those with a physical component, and general health perceptions. These results can thus help quantify the impact of a new cancer on HRQoL evolution and potentially facilitate early intervention by identifying the most affected HRQoL domains.
PMCID: PMC317475  PMID: 14715085
5.  Quality of Life in Adolescents With Mild Asthma 
Pediatric pulmonology  2003;36(6):536-543.
The majority of individuals with asthma have mild disease, often in conjunction with allergic rhinitis and exercise-induced bronchoconstriction (EIB). Although health-related quality-of-life (HRQoL) is reduced in moderate to severe asthma and allergic rhinitis, little is known about the effect of mild asthma, mild allergic rhinitis, and EIB on HRQoL outcomes. The objective of this study was to determine the effect of mild asthma, allergic rhinitis, and EIB on HRQoL. A cross-sectional study was conducted of 160 adolescent athletes participating in a screening program to detect EIB. Generic HRQoL was assessed with the teen version of the pediatric quality-of-life inventory (PedsQL™). Prior diagnoses of asthma, allergic rhinitis, and EIB, and current symptoms of dyspnea during exercise and asthma, were recorded. Lung function and the presence of EIB were determined by spirometry before and after an exercise challenge test. Adolescent athletes with a prior physician diagnosis of asthma had a lower HRQoL scale summary score (P < 0.01) and lower physical functioning, emotional functioning, and school functioning domain scores (P values, 0.01–0.02) in comparison to adolescent athletes with no prior diagnosis of these disorders. Athletes with a prior diagnosis of asthma reported dyspnea during exercise more frequently than did those without asthma (P < 0.001). Adolescent athletes with dyspnea during exercise had a lower scale summary score, and lower physical functioning, general well-being, and emotional functioning domain scores (P values, 0.02–0.03). These data show that mild asthma and dyspnea without asthma significantly affect HRQoL. Symptoms of dyspnea during exercise are common in asthma and are associated with lower HRQoL. The clinical significance of these differences in HRQoL is unclear.
PMCID: PMC2002508  PMID: 14618647
asthma; allergic rhinitis; exercise-induced bronchoconstriction; health-related quality of life; spirometry
6.  Impact of physical activity and bodyweight on health-related quality of life in people with type 2 diabetes 
Increasing obesity prevalence rates in the general population are reflected in patients with type 2 diabetes. Health-related quality of life (HRQoL) is negatively affected in patients who are overweight or have diabetes, but physical activity (PA) is proven to have positive side effects on the perceived quality of life. Little is known about the relationship of PA with obesity, diabetes, and HRQoL. Therefore, the objective of the present study was to examine the relationship between HRQoL and PA in type 2 diabetics in association with the severity of overweight.
This was a cross-sectional multicenter cohort study involving 370 outpatients with type 2 diabetes. Participants completed the SF-36 Health Survey (SF-36®) and the Freiburger Questionnaire for Physical Activity (FFkA). Endurance capacity was tested with a 2 km walking test. t-tests, analysis of variance, Pearson’s correlation test, and multiple regression analyses were performed.
HRQoL is negatively affected by body mass index (BMI). The results show that patients with type 2 diabetes and grade II obesity (BMI > 35) have a lower HRQoL than overweight patients (BMI 25–29.99) and patients with grade I obesity (BMI 30–35). HRQoL decreases with decreasing PA in all dimensions of the SF-36. PA remains a significant predictor of physical composite summary (B = 0.09; β = 0.11; P < 0.05), physical function (B = 0.10; β = 0.13; P < 0.01), mental composite summary (B = 0.13; β = 0.20; P < 0.001), vitality (B = 0.15; β = 0.24; P < 0.001), and psychological well-being (B = 0.11; β = 0.18; P < 0.01) when controlling for age, sex, and BMI.
Because of the strong association between being overweight/obese and several risk factors for morbidity and mortality, reversing the obesity epidemic is an urgent priority. Based upon the results of this study and the available evidence of the efficacy of PA for preventing and treating those who are overweight or obese, health care professionals should continue to stress the importance of PA as a treatment option.
PMCID: PMC3430085  PMID: 22952412
diabetes mellitus type 2; health-related quality of life; obesity; physical activity
7.  Feasibility and acceptance of electronic quality of life assessment in general practice: an implementation study 
Patients' health related quality of life (HRQoL) has rarely been systematically monitored in general practice. Electronic tools and practice training might facilitate the routine application of HRQoL questionnaires. Thorough piloting of innovative procedures is strongly recommended before the conduction of large-scale studies. Therefore, we aimed to assess i) the feasibility and acceptance of HRQoL assessment using tablet computers in general practice, ii) the perceived practical utility of HRQoL results and iii) to identify possible barriers hindering wider application of this approach.
Two HRQoL questionnaires (St. George's Respiratory Questionnaire SGRQ and EORTC QLQ-C30) were electronically presented on portable tablet computers. Wireless network (WLAN) integration into practice computer systems of 14 German general practices with varying infrastructure allowed automatic data exchange and the generation of a printout or a PDF file. General practitioners (GPs) and practice assistants were trained in a 1-hour course, after which they could invite patients with chronic diseases to fill in the electronic questionnaire during their waiting time. We surveyed patients, practice assistants and GPs regarding their acceptance of this tool in semi-structured telephone interviews. The number of assessments, HRQoL results and interview responses were analysed using quantitative and qualitative methods.
Over the course of 1 year, 523 patients filled in the electronic questionnaires (1–5 times; 664 total assessments). On average, results showed specific HRQoL impairments, e.g. with respect to fatigue, pain and sleep disturbances. The number of electronic assessments varied substantially between practices. A total of 280 patients, 27 practice assistants and 17 GPs participated in the telephone interviews. Almost all GPs (16/17 = 94%; 95% CI = 73–99%), most practice assistants (19/27 = 70%; 95% CI = 50–86%) and the majority of patients (240/280 = 86%; 95% CI = 82–91%) indicated that they would welcome the use of electronic HRQoL questionnaires in the future. GPs mentioned availability of local health services (e.g. supportive, physiotherapy) (mean: 9.4 ± 1.0 SD; scale: 1 – 10), sufficient extra time (8.9 ± 1.5) and easy interpretation of HRQoL results (8.6 ± 1.6) as the most important prerequisites for their use. They believed HRQoL assessment facilitated both communication and follow up of patients' conditions. Practice assistants emphasised that this process demonstrated an extra commitment to patient centred care; patients viewed it as a tool, which contributed to the physicians' understanding of their personal condition and circumstances.
This pilot study indicates that electronic HRQoL assessment is technically feasible in general practices. It can provide clinically significant information, which can either be used in the consultation for routine care, or for research purposes. While GPs, practice assistants and patients were generally positive about the electronic procedure, several barriers (e.g. practices' lack of time and routine in HRQoL assessment) need to be overcome to enable broader application of electronic questionnaires in every day medical practice.
PMCID: PMC2698929  PMID: 19493355
8.  Risk of malnutrition and health-related quality of life in community-living elderly men and women: The Tromsø study 
Quality of Life Research  2010;20(4):575-582.
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.
PMCID: PMC3075394  PMID: 21076942
HRQoL; EQ-5D; Body mass index; Elderly; Malnutrition universal screening tool; Nutrition assessment
9.  Factors Associated with Health-Related Quality of Life in Chronic Spinal Cord Injury 
An important goal of rehabilitation and treatment after spinal cord injury (SCI) is to improve function and enhance health-related quality of life (HRQoL). However, previous assessments are limited by use of HRQoL instruments not specific to SCI. Although respiratory dysfunction is common in SCI, it has not been possible to assess the association of comorbid medical conditions, including respiratory symptoms and pulmonary function, to HRQoL. Therefore, we assessed whether these factors were associated with HRQoL in SCI using an SCI-specific HRQoL questionnaire.
In our cross-sectional study, 356 participants ≥ 1 yr post-SCI completed a 23-item SCI-specific HRQoL questionnaire and a detailed health questionnaire, and underwent pulmonary function testing and a neurological exam at VA Boston between 1998 and June 2003.
In a multivariate regression model, age, employment status, motor level and completeness of injury, and ambulatory mode (use of hand-propelled or motorized wheelchair, use of crutches or canes, or walking independently) were independently associated with HRQoL. After adjusting for these factors, chronic cough, chronic phlegm, persistent wheeze, dyspnea with activities of daily living, and lower forced expiratory volume in 1 sec and forced vital capacity were each associated with a lower HRQoL.
These results provide evidence for the clinical validity of our SCI-specific HRQoL instrument. We also identify potentially modifiable factors that, if addressed, may lead to HRQoL improvement in SCI.
PMCID: PMC2292343  PMID: 17449983
Quality Of Life; Spinal Cord Injuries; Pulmonary Function Tests; Comorbidity
10.  Perceived risk, trust and health-related quality of life among cancer survivors 
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.
PMCID: PMC3040106  PMID: 20333563
Perceived risk; Trust; Health-Related Quality of Life; Cancer survivors; Fear of recurrence
11.  Responsiveness of the EQ-5D in breast cancer patients in their first year after treatment 
The EQ-5D is a generic health-related quality of life (HRQoL) measure that is used for the purpose of economic evaluations of health interventions. Therefore, it has to be responsive to meaningful changes in health in the patient population under investigation. The aim of this study was to investigate the responsiveness of the EQ-5D in breast cancer patients in their first year after treatment.
The subscale global health of the disease-specific HRQoL measure EORTC QLQ-C30 was used as a reference instrument to determine meaningful changes in health and identify subgroups of patients: patients reporting a moderate-large deterioration, small deterioration, a small improvement, moderate-large improvement, or no change in health status. Responsiveness was evaluated by calculating standardized response means (SRMs) in the five subgroups of patients and performing analysis of variance procedures. The two HRQoL measures were filled out two weeks and one year after finalizing curative treatment for breast cancer (n = 192).
The EQ-5D was able to capture both improvements and deteriorations in HRQoL. SRMs of the EQ VAS and EQ-5D Index were close to zero in the subgroup reporting no change and increased and decreased adequately in the subgroups reporting small and moderate changes. Additional analysis of variance procedures showed that the EQ-5D was able to differentiate between subgroups of patients with no change and moderate-large deterioration or improvement in health.
The EQ-5D seems an appropriate measure for the purpose of economic evaluations of health intervention in breast cancer patients after treatment.
Trial registration
Current Controlled Trials ISRCTN74071417.
PMCID: PMC2669061  PMID: 19200391
12.  Health-related quality of life among general practice patients with differing chronic diseases in Germany: Cross sectional survey 
BMC Public Health  2008;8:246.
This study was carried out to compare the HRQoL of patients in general practice with differing chronic diseases with the HRQoL of patients without chronic conditions, to evaluate the HRQoL of general practice patients in Germany compared with the HRQoL of the general population, and to explore the influence of different chronic diseases on patients' HRQoL, independently of the effects of multiple confounding variables.
A cross-sectional questionnaire survey including the SF-36, the EQ-5D and demographic questions was conducted in 20 general practices in Germany. 1009 consecutive patients aged 15–89 participated. The SF-36 scale scores of general practice patients with differing chronic diseases were compared with those of patients without chronic conditions. Differences in the SF-36 scale/summary scores and proportions in the EQ-5D dimensions between patients and the general population were analyzed. Independent effects of chronic conditions and demographic variables on the HRQoL were analyzed using multivariable linear regression and polynomial regression models.
The HRQoL for general practice patients with differing chronic diseases tended to show more physical than mental health impairments compared with the reference group of patients without. Patients in general practice in Germany had considerably lower SF-36 scores than the general population (P < 0.001 for all) and showed significantly higher proportions of problems in all EQ-5D dimensions except for the self-care dimension (P < 0.001 for all). The mean EQ VAS for general practice patients was lower than that for the general population (69.2 versus 77.4, P < 0.001). The HRQoL for general practice patients in Germany seemed to be more strongly affected by diseases like depression, back pain, OA of the knee, and cancer than by hypertension and diabetes.
General practice patients with differing chronic diseases in Germany had impaired quality of life, especially in terms of physical health. The independent impacts on the HRQoL were different depending on the type of chronic disease. Findings from this study might help health professionals to concern more influential diseases in primary care from the patient's perspective.
PMCID: PMC2515099  PMID: 18638419
13.  The generic 15D instrument is valid and feasible for measuring health related quality of life in Parkinson's disease 
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.
PMCID: PMC1739143  PMID: 15201353
14.  Health-related quality of life in adolescents with chronic physical illness in northern Russia: a cross-sectional study 
Health related quality of life (HRQoL) is an important subjectively evaluated outcome of adolescents physical, mental, and social functioning. It gives us the possibility to assess the disease impact on life of adolescents, and to sort out target groups of adolescents for future psychological interventions. The objective of this cross-sectional survey was to study HRQoL in 173 adolescents with chronic physical illness (CPI - diabetes, asthma, and epilepsy), and to find HRQoL predictors in each disease group.
Disease-specific questionnaires were completed by each adolescent recruited from the local outpatient clinic; mothers answered the questions on socioeconomic status (SES); and the patients’ clinicians evaluated the severity of the disease.
A high proportion of adolescents in each disease specific sample reported moderate to high levels of HRQoL. Gender was the most prominent predictor of HRQoL in all three studied groups, while disease severity predicted HRQoL in the diabetic group and to some extent in the asthma group.
Our results provide evidence that adolescents with diabetes, asthma, and epilepsy in northern Russia maintain relatively moderate to high levels of HRQoL. The domains affecting HRQoL were related to both disease-specific (severity) and non-disease factors (gender and SES). Our study suggests that future psychosocial interventions should focus on aspects of CPI impacting adolescents in gendered ways, furthermore taking into account disease specific factors.
PMCID: PMC3905674  PMID: 24460738
Adolescents; Chronic physical illness; Disease severity; Gender; Health-related quality of life
15.  Association of physical fitness with health-related quality of life in Finnish young men 
Currently, there is insufficient evidence available regarding the relationship between level of physical fitness and health-related quality of life (HRQoL) in younger adults. Therefore, the aim of the present study was to investigate the impact of measured cardiovascular and musculoskeletal physical fitness level on HRQoL in Finnish young men.
In a cross-sectional study, we collected data regarding the physical fitness index, including aerobic endurance and muscle fitness, leisure-time physical activity (LTPA), body composition, health, and HRQoL (RAND 36) for 727 men [mean (SD) age 25 (5) years]. Associations between HRQoL and the explanatory parameters were analyzed using the logistic regression analysis model.
Of the 727 participants who took part in the study, 45% were in the poor category of the physical fitness, while 37% and 18% were in the satisfactory and good fitness categories, respectively. A higher frequency of LTPA was associated with higher fitness (p < 0.001). Better HRQoL in terms of general health, physical functioning, mental health, and vitality were associated with better physical fitness. When the HRQoL of the study participants were compared with that of the age- and gender-weighted Finnish general population, both the good and satisfactory fitness groups had higher HRQoL in all areas other than bodily pain. In a regression analysis, higher LTPA was associated with three dimensions of HRQoL, higher physical fitness with two, and lower number of morbidities with all dimensions, while the effect of age was contradictory.
Our study of Finnish young men indicates that higher physical fitness and leisure-time physical activity level promotes certain dimensions of HRQoL, while morbidities impair them all. The results highlight the importance of health related physical fitness while promoting HRQoL.
PMCID: PMC2835678  PMID: 20109241
16.  The association of sleep difficulties with health-related quality of life among patients with fibromyalgia 
Difficulty sleeping is common among patients with fibromyalgia (FM); however, its impact on health-related quality of life (HRQoL) is not well understood. The aim of the current study was to assess the burden of sleep difficulty symptoms on HRQoL among patients with FM.
The current study included data from the 2009 National Health and Wellness Survey (N=75,000), which is a cross-sectional, Internet-based survey representative of the adult US population. The prevalence of sleep difficulty symptoms among patients with FM (n=2,196) were compared with matched controls (n=2,194), identified using propensity-score matching. Additionally, the relationship between the number of sleep difficulty symptoms (none, one, or two or more) and HRQoL (using the SF-12v2) was assessed using regression modeling, controlling for demographic and health history variables.
Of the 2,196 patients with FM, 11.2% reported no sleep difficulty symptoms, 25.7% reported one sleep difficulty symptom, and 63.05% reported two or more sleep difficulty symptoms. The prevalence of sleep difficulty symptoms was significantly higher than matched controls. Patients with one and two sleep difficulty symptoms both reported significantly worse HRQoL summary and domain scores relative to those with no sleep difficulty symptoms (all p<.05). Further, the relationship between sleep difficulty symptoms and HRQoL was significantly different between those with FM than matched controls, suggesting a uniqueness of the burden of sleep difficulties within the FM population.
Among the FM population, sleep difficulty symptoms were independently associated with clinically-meaningful decrements in mental and physical HRQoL. These results suggest that greater emphasis in the treatment of sleep difficulty symptoms among the FM population may be warranted.
PMCID: PMC3526442  PMID: 23072292
Fibromyalgia; Sleep; Insomnia; Health-related quality of life; Pain
17.  Health-related quality of life of child and adolescent retinoblastoma survivors in the Netherlands 
To assess health-related quality of life (HRQoL) in children (8–11 years) and adolescents (12–18 years) who survived retinoblastoma (RB), by means of the KIDSCREEN self-report questionnaire and the proxy-report version.
This population-based cross-sectional study (participation rate 70%) involved 65 RB survivors (8–18 years) and their parents. Child/adolescents' and parents' perception of their youth's HRQoL was assessed using the KIDSCREEN, and the results were compared with Dutch reference data. Relations with gender, age, marital status of the parents, and visual acuity were analyzed.
RB survivors reported better HRQoL than did the Dutch reference group on the dimensions "moods and emotions" and "autonomy". Increased ratings of HRQoL in RB survivors were mainly seen in perceptions of the younger children and adolescent girls. RB survivors with normal visual acuity scored higher on "physical well-being" than visually impaired survivors. Age was negatively associated with the dimensions "psychological well-being", "self-perception" (according to the child and parent reports) and "parent relations and home life" (according to the child). "Self-perception" was also negatively associated with visual acuity (according to the child). Only parents of young boys surviving RB reported lower on "autonomy" than the reference group, and parents of low visual acuity and blind RB survivors reported higher on "autonomy" than parents of visually unimpaired survivors. Survivors' perceptions and parents' perceptions correlated poorly on all HRQoL dimensions.
RB survivors reported a very good HRQoL compared with the Dutch reference group. The perceptions related to HRQoL differ substantially between parents and their children, i.e. parents judge the HRQoL of their child to be relatively poorer. Although the results are reassuring, additional factors of HRQoL that may have more specific relevance, such as psychological factors or coping skills, should be explored.
PMCID: PMC2219958  PMID: 18053178
Medical care  2007;45(12):1162-1170.
A number of indexes measuring self-reported generic health-related quality-of-life (HRQoL) using preference-weighted scoring are used widely in population surveys and clinical studies in the U.S.
To obtain age-by-gender norms for older adults on 6 generic HRQoL indexes in a cross-sectional U.S. population survey and compare age-related trends in HRQoL.
The EQ-5D, HUI2, HUI3, SF-36v2™ (used to compute SF-6D), QWB-SA and HALex were administered via telephone interview to each respondent in a national survey sample of 3,844 non-institutionalized adults aged 35-89. Persons aged 65 to 89 and telephone exchanges with high percentages of African Americans were over-sampled. Age-by-gender means were computed using sampling and post-stratification weights to adjust results to the U.S. adult population.
The six indexes exhibit similar patterns of age-related HRQoL by gender; however, means differ significantly across indexes. Females report slightly lower HRQoL than do males across all age groups. HRQoL appears somewhat higher for persons age 65-74 compared to people in the next younger age decade, as measured by all indexes.
Six HRQoL measures show similar but not identical trends in population norms for older U.S. adults. Results reported here provide reference values for 6 self-reported HRQoL indexes.
PMCID: PMC2647803  PMID: 18007166
Health-related quality-of-life; Health Status; EQ-5D; SF-6D; QWB-SA; SF-6D; Health Utilities Index; HUI2; HUI3; SF-36; Population survey; Adults; Aging; Patient-Reported Outcomes; Health Outcomes measures; Comparative studies
19.  Health-related quality of life in different stages of chronic kidney disease and at initiation of dialysis treatment 
To evaluate health-related quality of life (HRQoL) in patients in different stages of chronic kidney disease (CKD) up to initiation of dialysis treatment and to explore possible correlating and influencing factors.
Cross-sectional design with 535 patients in CKD stages 2–5 and 55 controls assessed for HRQoL through SF-36 together with biomarkers.
All HRQoL dimensions deteriorated significantly with CKD stages with the lowest scores in CKD 5. The largest differences between the patient groups were seen in ‘physical functioning’, ‘role physical’, ‘general health’ and in physical summary scores (PCS). The smallest disparities were seen in mental health and pain. Patients in CKD stages 2–3 showed significantly decreased HRQoL compared to matched controls, with differences of large magnitude - effect size (ES) ≥ .80 - in ‘general health’ and PCS. Patients in CDK 4 demonstrated deteriorated scores with a large magnitude in ‘physical function’, ‘general health’ and PCS compared to the patients in CKD 2–3. Patients in CKD 5 demonstrated deteriorated scores with a medium sized magnitude (ES 0.5 – 0.79) in ‘role emotional’ and mental summary scores compared to the patients in CKD 4. Glomerular filtration rate <45 ml/min/1.73 m², age ≥ 61 years, cardiovascular disease (CVD), diabetes, C-reactive protein (CRP) ≥5 mg/L, haemoglobin ≤110 g/L, p-albumin ≤ 35 g/L and overweight were associated with impaired HRQoL. CRP and CVD were the most important predictors of impaired HRQoL, followed by reduced GFR and diabetes.
Having CKD implies impaired HRQoL, also in earlier stages of the disease. At the time for dialysis initiation HRQoL is substantially deteriorated. Co-existing conditions, such as inflammation and cardiovascular disease seem to be powerful predictors of impaired HRQoL in patients with CKD. Within routine renal care, strategies to improve function and well-being considering the management of co-existing conditions like inflammation and CVD need to be developed.
PMCID: PMC3511211  PMID: 22710013
Quality of life; Health status; Chronic kidney disease; Cross-sectional studies; Comorbidity
20.  The proxy problem anatomized: child-parent disagreement in health related quality of life reports of chronically ill adolescents 
Discrepancy between self-reports and parent-proxy reports of adolescent health-related quality of life (HRQoL) has been repeatedly acknowledged in the literature as the proxy problem. However, little is known about the extent and direction of this discrepancy. The purpose of this study is to explore to what extent and in what direction HRQoL self-reports of adolescents with chronic conditions and those of their parents differ.
A cross-sectional survey was conducted among adolescents suffering from chronic conditions and their parents. Socio-demographic and disease-related characteristics were collected and information about consequences of the chronic condition was assessed. HRQoL was measured with KIDSCREEN-10 and DISABKIDS condition generic measure (DCGM-10). Agreement was analysed through defining a threshold of agreement based on half of the standard deviation of the HRQoL score with the highest variance. Agreement occurred if the difference between adolescent and parent scores was less than or equal to half of the standard deviation. Intra-class correlation coefficients and Bland-Altman plots were also computed. The characteristics associated with direction of disagreement were statistically tested with one-way ANOVA and Chi-square tests.
584 paired HRQoL scores were obtained. Ratings from both adolescents and parents were high, compared to European norm data. Differences between adolescents and parents were statistically significant, yet relatively small. Disagreement existed in both directions: in 24.5% (KIDSCREEN-10) and 16.8% (DCGM-10) of the cases adolescents rated their HRQoL lower than did their parent, while in 32.2% (KIDSCREEN-10) and 31.7% (DCGM-10) of the cases the opposite was true. Adolescent's age, educational level and type of education, parent's educational level, number of hospital admissions and several other disease-related factors influenced direction of disagreement.
In a reasonable proportion of cases the adolescent and parent agreed on the adolescent's HRQoL (43-51% of the cases) and most disagreement tended to be minor. Thus, the proxy problem may be smaller than presented in the literature and its extent may differ per population. As adolescents are expected to become partners in their own health care, it is recommended to focus on adolescents' own perceptions of HRQoL.
PMCID: PMC3299605  PMID: 22276974
Adolescent; Chronic Illness; Self Report; Quality of Life; Parent; Proxy Report; KIDSCREEN-10; DCGM-10
21.  Double disadvantage: a case control study on health-related quality of life in children with sickle cell disease 
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.
PMCID: PMC2988059  PMID: 20977722
22.  Quality of Life in Patients with Knee Osteoarthritis: A Commentary on Nonsurgical and Surgical Treatments 
Knee osteoarthritis (OA) has a significant negative impact on health-related quality of life (HRQoL). Identification of therapies that improve HRQoL in patients with knee OA may mitigate the clinical, economic, and social burden of this disease. The purpose of this commentary is to report the impact of knee OA on HRQoL, describe the change in HRQoL attributable to common knee OA interventions, and summarize findings from clinical trials of a promising therapy. Nonsurgical therapies do not reliably modify HRQoL in knee OA patients given their general inability to alleviate physical manifestations of OA. Surgical knee OA interventions generally result in good to excellent patient outcomes. However, there are significant barriers to considering surgery, which limits clinical utility. Therapies that most effectively control OA-related pain with a low risk: benefit ratio will likely have the greatest benefit on HRQoL with greater rates of patient adoption. Initial clinical trial findings suggest that less invasive joint unloading implants hold promise in bridging the therapeutic gap between nonsurgical and surgical treatments for the knee OA patient.
PMCID: PMC3841966  PMID: 24285987
Intervention; knee; osteoarthritis; pain; quality of life; unloading.
23.  Health Related Quality of Life of Stroke Survivors: Experience of a Stroke Unit 
Stroke has a major impact on survivors including Health related Quality of life (HRQoL). HRQoL measurements are potentially more relevant to patients than measurements of impairments or disability and are an important index of outcome after stroke that can facilitate a broader description of disease and outcome. This study examined the factors associated with HRQoL of stroke survivors.
In a cross-sectional and descriptive correlational design, 62 patients were prospectively enrolled and interviewed 3 months post stroke in neurology out-patient clinic. After case identification, functional status (handicap) was determined using the Modified Rankin Scale (MRS), while Zung Depression Self-Rating Scale (ZDS) was used to determine presence of depression. HRQoL was assessed using the Stroke Impact Scale-16 (SIS-16). Age, sex, duration of formal education, depression and degree of disability were correlated with HRQoL in multiple logistic regressions.
The mean age of patients was 54.4 ± 9.9 years. Mean duration of formal education was significantly higher in males than females (p value=0.007). About one third (29%) of the stroke survivors were depressed and more than half (54.8%) had good recovery. Function status measured by modified Rankin Scale and depression were independent determinants of poor HRQoL.
Functional status and depression were identified as independent factors affecting HRQoL of stroke survivors.
PMCID: PMC3615283  PMID: 23675271
health related quality of life; stroke survivors; SIS-16; Sokoto
24.  Quality of Life in GERD and Barrett’s Esophagus is Related to Gender and Manifestation of Disease 
Gastroesophageal reflux disease (GERD) is a common condition that impacts patients’ health-related quality of life (HRQoL). The HRQoL of Barrett’s esophagus (BE) has been less well studied. Furthermore, it is unknown to what extent BE patients suffer from psychological distress as a result of carrying a diagnosis of a premalignant condition. We sought to compare BE and GERD (stratified by erosive (ERD) and non-erosive reflux disease (NERD)) with regards to HRQoL and psychological impact.
In this single-center study of subjects presenting for elective upper endoscopy, consecutive patients with BE and GERD were enrolled. Participants completed questionnaires assessing generic HRQoL (Medical Outcomes Study Short Form-36: SF-36), disease-specific HRQoL (Gastrointestinal Quality of Life Index: GIQLI), a measure of psychological distress (the Revised Hopkins Symptom Checklist: SCL-90R) and a patient-centered assessment of impact of disease severity (the GERD health-related quality of life measure: GERD HRQL).
Patients with BE had the lowest symptom severity compared to those with NERD or ERD (GERD HRQL: 13.7 vs. 18 and 15.9 respectively, p<0.01). Those with BE also had better disease-specific quality of life compared to NERD or ERD patients (GIQLI: 137.2 vs. 124.3 and 131.0 respectively, p<0.001). After adjusting for potential confounding variables including symptom severity and gender, BE patients continued to demonstrate better disease-specific HRQoL, scoring 12.2 points higher on the GIQLI than NERD patients (95% CI 5.1 – 19.3) and 16.3 points higher than ERD patients (95% CI 5.4 – 27.3), as well as better generic HRQoL, scoring 4.8 points higher on the SF-36 physical component summary than NERD patients (95% CI 0.8 – 8.8) and 7.1 points higher than ERD patients (95% CI 1.2–13.1). There were no significant differences between groups in psychological distress, as demonstrated by the SCL-90R global severity index, though BE patients scored lower on the somatization domain compared to NERD and ERD patients. When stratified by gender, females with NERD and BE had worse disease-specific HRQoL than males.
Patients with BE have better generic and disease-specific HRQoL when compared to patients with NERD and ERD. This difference is only partially attributable to lower symptom severity amongst BE patients. Psychological distress did not differ significantly amongst groups. Female gender was associated with worsened HRQoL regardless of GERD disease manifestation. Though more precise instruments may aid in detecting any HRQoL decrements in BE patients due to perceived cancer risk or fear of developing or dying from cancer, we were unable to demonstrate an additional decrement in HRQoL due to cancer risk in subjects with BE.
PMCID: PMC3073722  PMID: 19755967
Barrett esophagus; Gastroesophageal reflux; Erosive esophagitis; Non-erosive esophagitis; Quality of Life; Gender
25.  Effect of general symptom level, specific adverse events, treatment patterns, and patient characteristics on health-related quality of life in patients with multiple myeloma: results of a European, multicenter cohort study 
Supportive Care in Cancer  2013;22:417-426.
Novel multiple myeloma (MM) therapies have increased patient longevity but are often associated with notable symptom burden. This study quantified the effect of general symptom level, specific symptoms, and treatment-related adverse events (AEs) on MM patients’ health-related quality of life (HRQoL).
The European Organization for Research and Treatment of Cancer (EORTC) generic cancer questionnaire (Quality of Life Questionnaire Core 30) and MM-specific questionnaire (QLQ-MY20) were used in this study to assess patients’ HRQoL. Data were collected on sociodemographics, disease and treatment history, and the presence/severity of MM-related symptoms or treatment-related AEs from patients with MM in 11 UK and German centers. Multiple regression analyses were conducted.
Of 154 patients (63 % male; mean age, 66.4 years; mean time since diagnosis, 3.7 years; 52 % currently on treatment; and 43 % with ≥1 prior MM therapy), 25, 32, 31, and 11 % were severely symptomatic, moderately symptomatic, mildly symptomatic, and asymptomatic, respectively. Fatigue (59 %), bone pain (51 %), sleepiness (36 %), hypoesthesia or paresthesia (33 %), and muscle cramps (31 %) were most commonly reported. Moderate and severe general symptom levels, bone symptoms, depression, and mental status changes were identified as strong determinants of HRQoL.
Severity, type of disease symptoms, and treatment-related AEs are important HRQoL determinants in patients with MM, allowing for targeted treatment.
PMCID: PMC3882558  PMID: 24122403
Adverse events; Health-related quality of life; Multiple myeloma; Symptoms

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