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1.  Double trouble: the impact of multimorbidity and deprivation on preference-weighted health related quality of life a cross sectional analysis of the Scottish Health Survey 
Objective
To investigate the association between multimorbidity and Preference_Weighted Health Related Quality of Life (PW_HRQoL), a score that combines physical and mental functioning, and how this varies by socioeconomic deprivation and age.
Design
The Scottish Health Survey (SHeS) is a cross-sectional representative survey of the general population which included the SF-12, a survey of HRQoL, for individuals 20 years and over.
Methods
For 7,054 participants we generated PW_HRQoL scores by running SF-12 responses through the SF-6D algorithm. The resulting scores ranged from 0.29 (worst health) to 1 (perfect health). Using ordinary least squares, we first investigated associations between scores and increasing counts of longstanding conditions, and then repeated for multimorbidity (2+ conditions). Estimates were made for the general population and quintiles of socioeconomic deprivation. For multimorbidity, the analyses were repeated stratifying the population by age group (20–44, 45–64, 65+).
Results
45% of participants reported a longstanding condition and 18% reported multimorbidity. The presence of 1, 2, or 3+ longstanding conditions were associated with average reductions in PW_HRQoL scores of 0.081, 0.151 and 0.212 respectively. Reduction in scores associated with multimorbidity was 33% greater in the most deprived quintile compared to the least deprived quintile, with the biggest difference (80%) in the 20–44 age groups. There were no significant gender differences.
Conclusions
PW_HRQoL decreases markedly with multimorbidity, and is exacerbated by higher deprivation and younger age. There is a need to prioritise interventions to improve the HRQoL for (especially younger) adults with multimorbidity in deprived areas.
Box 1
What Is Known?
Prevalence and premature onset of multimorbidity increases as socioeconomic position worsens. Previous studies have investigated the effect of multimorbidity on Health Related Quality of Life (HRQoL) on separate physical and mental health states. There is limited data on how HRQoL falls as the number of conditions increase, and how estimates vary across the general population.
Leaving physical and mental health as separate categories can inhibit assessment of overall HRQoL. The use of a Preference_Weighted Health Related Quality of Life (PW_HRQoL) score provides a single summary measure of overall health, by weighting mental and physical states by their perceived importance as part of overall HRQoL. The use of a single score enables a simple and consistent assessment of the impact of conditions and how this varies across the population. Economists term PW_HRQoL scores health utilities.
What this study adds?
This is the first study to estimate how the impact of multimorbidity on PW_HRQoL scores varies by age group and socioeconomic deprivation. Multimorbidity has a substantial negative impact on HRQoL which is most severe in areas of deprivation, especially in younger adults.
Measuring the burden of multimorbidity using PW_HRQoL provides consistency with how economists measure HRQoL; changes in which can be used in economic evaluation to assess the cost effectiveness of interventions.
doi:10.1186/1475-9276-12-67
PMCID: PMC3765174  PMID: 23962150
Multimorbidity; Preference_Weighted Health Related Quality of Life (PW_HRQoL); Deprivation; Inequality
2.  Respiratory symptoms in adults are related to impaired quality of life, regardless of asthma and COPD: results from the European community respiratory health survey 
Background
Respiratory symptoms are common in the general population, and their presence is related to Health-related quality of life (HRQoL). The objective was to describe the association of respiratory symptoms with HRQoL in subjects with and without asthma or COPD and to investigate the role of atopy, bronchial hyperresponsiveness (BHR), and lung function in HRQoL.
Methods
The European Community Respiratory Health Survey (ECRHS) I and II provided data on HRQoL, lung function, respiratory symptoms, asthma, atopy, and BHR from 6009 subjects. Generic HRQoL was assessed through the physical component summary (PCS) score and the mental component summary (MCS) score of the SF-36.
Factor analyses and linear regressions adjusted for age, gender, smoking, occupation, BMI, comorbidity, and study centre were conducted.
Results
Having breathlessness at rest in ECRHS II was associated with mean score (95% CI) impairment in PCS of -8.05 (-11.18, -4.93). Impairment in MCS score in subjects waking up with chest tightness was -4.02 (-5.51, -2.52). The magnitude of HRQoL impairment associated with respiratory symptoms was similar for subjects with and without asthma/COPD. Adjustments for atopy, BHR, and lung function did not explain the association of respiratory symptoms and HRQoL in subjects without asthma and/or COPD.
Conclusion
Subjects with respiratory symptoms had poorer HRQoL; including subjects without a diagnosis of asthma or COPD. These findings suggest that respiratory symptoms in the absence of a medical diagnosis of asthma or COPD are by no means trivial, and that clarifying the nature and natural history of respiratory symptoms is a relevant challenge.
Several community studies have estimated the prevalence of common respiratory symptoms like cough, dyspnoea, and wheeze in adults [1-3]. Although the prevalence varies to a large degree between studies and geographical areas, respiratory symptoms are quite common. The prevalences of respiratory symptoms in the European Community Respiratory Health Study (ECRHS) varied from one percent to 35% [1]. In fact, two studies have reported that more than half of the adult population suffers from one or more respiratory symptoms [4,5].
Respiratory symptoms are important markers of the risk of having or developing disease. Respiratory symptoms have been shown to be predictors for lung function decline [6-8], asthma [9,10], and even all-cause mortality in a general population study [11]. In patients with a known diagnosis of asthma or chronic obstructive pulmonary disease (COPD), respiratory symptoms are important determinants of reduced health related quality of life (HRQoL) [12-15]. The prevalence of respiratory symptoms exceeds the combined prevalences of asthma and COPD, and both asthma and COPD are frequently undiagnosed diseases [16-18]. Thus, the high prevalence of respipratory symptoms may mirror undiagnosed and untreated disease.
The common occurrence of respiratory symptoms calls for attention to how these symptoms affect health also in subjects with no diagnosis of obstructive airways disease. Impaired HRQoL in the presence of respiratory symptoms have been found in two population-based studies [6,19], but no study of respiratory sypmtoms and HRQoL have separate analyses for subjects with and without asthma and COPD, and no study provide information about extensive objective measurements of respiratory health.
The ECRHS is a randomly sampled, multi-cultural, population based cohort study. The ECRHS included measurements of atopy, bronchial hyperresponsiveness (BHR), and lung function, and offers a unique opportunity to investigate how respiratory symptoms affect HRQoL among subjects both with and without obstructive lung disease.
In the present paper we aimed to: 1) Describe the relationship between respiratory symptoms and HRQoL in an international adult general population and: 2) To assess whether this relationship varied with presence of asthma and/or COPD, or presence of objective functional markers like atopy and BHR.
doi:10.1186/1477-7525-8-107
PMCID: PMC2954977  PMID: 20875099
3.  Relation of Health-Related Quality of Life to Metabolic Syndrome, Obesity, Depression, and Comorbid Illnesses 
Background
Metabolic syndrome has been associated with impaired health-related quality of life (HRQoL) in several studies. Many studies used only one HRQoL measure and failed to adjust for important confounding variables including obesity, depression, and comorbid conditions.
Objective
To investigate the relationship between metabolic syndrome and HRQoL using multiple measures. We also sought to determine whether increasing body mass index (BMI) or diabetes status further modified this relationship.
Methods
This cross-sectional study included 390 obese participants with elevated waist circumference and at least one other criterion for metabolic syndrome. Of these 390, 269 had metabolic syndrome [i.e., met 3 out of 5 criteria specified by the National Cholesterol Education Program (NCEP)] and 121 did not. Participants were enrolled in a primary-care based weight reduction trial. HRQoL was assessed using two generic instruments, the Medical Outcomes Study Short-Form 12 (SF-12) and the EuroQol-5D (EQ-5D), as well as an obesity-specific measure, the Impact of Weight on Quality of Life (IWQoL-Lite). Differences in HRQoL were compared among participants with and without metabolic syndrome. Multivariable linear regression was used to determine how HRQoL varied according to metabolic syndrome status, and whether factors including weight, depression, and burden of comorbid disease modified this relationship.
Results
Metabolic syndrome was not associated with HRQoL as assessed by any of the measures. In univariable analysis, depression, disease burden, and employment status were significantly associated with worse HRQoL on all instruments. In the multivariable models, only depression remained significantly associated with reduced HRQoL on all measures. Increasing obesity and diabetes status did not modify the relationship between metabolic syndrome and HRQoL.
Conclusion
In contrast to previous studies, metabolic syndrome was not associated with impaired HRQoL as assessed by multiple measures. This suggests that metabolic syndrome in itself is not associated with decreased HRQoL, but other factors such as obesity, depression, and greater disease burden may significantly influence quality of life in this population.
doi:10.1038/ijo.2010.230
PMCID: PMC3085045  PMID: 21042326
metabolic syndrome; obesity; health-related quality of life
4.  Association of physical fitness with health-related quality of life in Finnish young men 
Background
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.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1186/1477-7525-8-15
PMCID: PMC2835678  PMID: 20109241
5.  The Impact of Change in Visual Field on Health-Related Quality of Life: The Los Angeles Latino Eye Study 
Ophthalmology  2011;118(7):1310-1317.
Purpose
To assess the impact of change in visual field (VF) on change in health related quality of life (HRQoL) at the population level.
Design
Prospective cohort study
Participants
3,175 Los Angles Latino Eye Study (LALES) participants
Methods
Objective measures of VF and visual acuity and self-reported HRQoL were collected at baseline and 4-year follow-up. Analysis of covariance was used to evaluate mean differences in change of HRQoL across severity levels of change in VF and to test for effect modification by covariates.
Main outcome measures
General and vision-specific HRQoL.
Results
Of 3,175 participants, 1430 (46%) showed a change in VF (≥1 decibel [dB]) and 1651, 1715 (54%) reported a clinically important change (≥5 points) in vision-specific HRQoL. Progressive worsening and improvement in the VF were associated with increasing losses and gains in vision-specific HRQoL for the composite score and 10 of its 11 subscales (all Ptrends<0.05). Losses in VF > 5 dB and gains > 3 dB were associated with clinically meaningful losses and gains in vision-specific HRQoL, respectively. Areas of vision-specific HRQoL most affected by greater losses in VF were driving, dependency, role-functioning, and mental health. The effect of change in VF (loss or gain) on mean change in vision-specific HRQoL varied by level of baseline vision loss (in visual field and/or visual acuity) and by change in visual acuity (all P-interactions<0.05). Those with moderate/severe VF loss at baseline and with a > 5 dB loss in visual field during the study period had a mean loss of vision-specific HRQoL of 11.3 points, while those with no VF loss at baseline had a mean loss of 0.97 points Similarly, with a > 5 dB loss in VF and baseline visual acuity impairment (mild/severe) there was a loss in vision-specific HRQoL of 10.5 points, whereas with no visual acuity impairment at baseline there was a loss of vision-specific HRQoL of 3.7 points.
Conclusion
Both losses and gains in VF produce clinically meaningful changes in vision-specific HRQoL. In the presence of pre-existing vision loss (VF and visual acuity), similar levels of visual field change produce greater losses in quality of life.
doi:10.1016/j.ophtha.2010.12.018
PMCID: PMC3129408  PMID: 21458074
6.  Feasibility and acceptance of electronic quality of life assessment in general practice: an implementation study 
Background
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.
Methods
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.
Results
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.
Conclusion
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.
doi:10.1186/1477-7525-7-51
PMCID: PMC2698929  PMID: 19493355
7.  Health related quality of life after extremely preterm birth: a matched controlled cohort study 
Background
The majority of infants born before the last trimester now grow up. However, knowledge on subsequent health related quality of life (HRQoL) is scarce. We therefore aimed to compare HRQoL in children born extremely preterm with control children born at term. Furthermore, we assessed HRQoL in relation to perinatal and neonatal morbidity and to current clinical and sociodemographic characteristics.
Method
The Child Health Questionnaire (CHQ-PF50) and a general questionnaire were applied in a population based cohort of 10 year old children born at gestational age ≤ 28 weeks or with birth weight ≤ 1000 grams in Western Norway in 1991-92 and in term-born controls, individually matched for gender and time of birth. The McNemar test and paired t-tests were used to explore group differences between preterms and matched controls. Paired regression models and analyses of interaction (SPSS mixed linear model) were used to explore potential effects of sociodemographic and clinical characteristics on HRQoL in the two groups.
Results
All 35 eligible preterm children participated. None had major impairments. Learning and/or attention problems were present in 71% of preterms and 20% of controls (odds ratio (OR): 7.0; 95% confidence interval (CI): 2.2 to 27.6). Insufficient professional support was described by 36% of preterm vs. 3% of control parents (OR: infinite; CI: 2.7 to infinite). Preterms scored lower on eight CHQ-PF50 sub-scales and the two summary scores, boys accounting for most of the deficits in areas of behavior, psychosocial functioning and parental burden. HRQoL was associated with learning and/or attention problems in both preterm and control children, significantly more so in preterms in areas related to health and parental burden. Within the preterm group, HRQoL was mostly unrelated to perinatal and neonatal morbidity.
Conclusions
HRQoL for children born extremely preterm, and particularly for boys, was described by parents to be inferior to that of children born at term, and sufficiently poor to affect the daily life of the children and their families. Learning and/or attention problems were reported for a majority of preterms, strongly influencing their HRQoL.
doi:10.1186/1477-7525-8-53
PMCID: PMC2894784  PMID: 20492724
8.  Cardiac rehabilitation may not provide a quality of life benefit in coronary artery disease patients 
Background
Improvements in patient-reported health-related quality of life (HRQoL) are important goals of cardiac rehabilitation (CR). In patients undergoing coronary angiography for angina and with documented coronary artery disease (CAD), the present study compared HRQoL over 6 months in CR participants and non-participants. Clinical predictors of CR participants were also assessed.
Methods
A total of 221 consecutive patients undergoing angiography for angina with documented CAD and who were eligible for a CR program were recruited. CR participants were enrolled in a six-week Phase II outpatient CR course (31%, n = 68) within 2 months following angiography and the non-participants were included as a control. At baseline (angiography), one and six months post angiography, clinical and HRQoL data were obtained including the Short Form-36 (SF-36) and the Seattle Angina Questionnaire (SAQ). The response rate for the HRQoL assessment was 68% (n = 150). Cross sectional comparisons were age-adjusted and performed using logistic or linear regression as appropriate. Longitudinal changes in HRQoL were assessed using least squares regression. Finally, a multiple logistic regression was fitted with CR participant as the final outcome.
Results
At angiography, the CR non-participants were older, and age-adjusted analyses revealed poorer physical (angina limitation: 54 ± 25 versus 64 ± 22, p <0.05) and mental HRQoL (significant psycho-social distress: 62%, n = 95 versus 47%, n = 32, p <0.05) compared to the CR participants. In addition, the CR participants were more likely to have undergone angiography for myocardial infarction (OR = 2.8, 95% CI 1.5-5.3, p = 0.001). By six months, all patients showed an improvement in HRQoL indices, however the rate of improvement did not differ between the controls and CR participants.
Conclusion
Following angiography, CAD patients reported improvements in both generic and disease-specific HRQoL, however CR participation did not influence this outcome. This may be explained by biases in CR enrollment, whereby acute patients, who may be less limited in HRQoL compared to stable, chronic patients, are targeted for CR participation. Further investigation is required so CR programs maximize the quality of life benefits to all potential CR patients.
doi:10.1186/1472-6963-12-406
PMCID: PMC3558459  PMID: 23164456
Coronary artery disease; Cardiac rehabilitation; Health-related quality of life
9.  Feasibility, reliability and validity of health-related quality of life questionnaire among adult pulmonary tuberculosis patients in urban Uganda: cross-sectional study 
Background
Despite the availability of standard instruments for evaluating health-related quality life (HRQoL), the feasibility, reliability, and validity of such instruments among tuberculosis (TB) patients in different populations of sub-Saharan Africa where TB burden is of concern, is still lacking.
Objective
We established the feasibility, reliability, and validity of the Medical Outcomes Survey (MOS) in assessing HRQoL among patients with pulmonary tuberculosis in Kampala, Uganda.
Methods
In a cross-sectional study, 133 patients with known HIV status and confirmed pulmonary TB disease were recruited from one public and one private hospital. Participants were enrolled based on duration of TB treatment according to the following categories: starting therapy, two months of therapy, and eight completed months of therapy. A translated and culturally adapted standardized 35-item MOS instrument was administered by trained interviewers. The visual analogue scale (VAS) was used to cross-validate the MOS.
Results
The MOS instrument was highly acceptable and easily administered. All subscales of the MOS demonstrated acceptable internal consistency with Cronbach's alpha above 0.70 except for role function that had 0.65. Each dimension of the MOS was highly correlated with the dimension measured concurrently using the VAS providing evidence of validity. Construct validity demonstrated remarkable differences in the functioning status and well-being among TB patients at different stages of treatment, between patients attending public and private hospitals, and between men and women of older age. Patients who were enrolled from public hospital had significantly lower HRQoL scores (0.78 (95% confidence interval (CI); 0.64-0.95)) for perceived health but significantly higher HRQoL scores (1.15 (95% CI; 1.06-1.26)) for health distress relative to patients from private hospital. Patients who completed an 8 months course of TB therapy had significantly higher HRQoL scores for perceived health (1.93 (95% CI; 1.19-3.13)), health distress subscales (1.29 (95% CI; 1.04-1.59)) and mental health summary scores (1.27 (95% CI; 1.09-1.48)) relative to patients that were starting therapy in multivariable analysis. Completion of 8 months TB therapy among patients who were recruited from the public hospital was associated with a significant increase in HRQoL scores for quality of life subscale (1.26 (95% CI; 1.08-1.49)), physical health summary score (1.22 995% CI; 1.04-1.43)), and VAS (1.08 (95% CI; 1.01-1.15)) relative to patients who were recruited from the private hospital. Older men were significantly associated with lower HRQoL scores for physical health summary score (0.68 (95% CI; 0.49-0.95)) and VAS (0.87 (95% CI; 0.75-0.99)) relative to women of the same age group. No differences were seen between HIV positive and HIV negative patients.
Conclusion
The study provides evidence that the MOS instrument is valid, and reliably measures HRQoL among TB patients, and can be used in a wide variety of study populations. The HRQoL differed by hospital settings, by duration of TB therapy, and by gender in older age groups.
doi:10.1186/1477-7525-8-93
PMCID: PMC2944342  PMID: 20813062
10.  Determinants of health-related quality of life in elderly in Tehran, Iran 
BMC Public Health  2008;8:323.
Background
As Iran started to experience population ageing, it is important to consider and address the elderly people's needs and concerns, which might have direct impacts on their well-being and quality of life. There have been only a few researches into different aspects of life of the elderly population in Iran including their health-related quality of life. The purpose of this study was to measure health-related quality of life (HRQoL) of elderly Iranians and to identify its some determinant factors.
Methods
This was a cross-sectional survey of a random sample of community residents of Tehran aged 65 years old and over. HRQoL was measured using the Short From Health Survey (SF-36). The study participants were interviewed at their homes. Uni-variate analysis was performed for group comparison and logistic regression analysis conducted to predict quality of life determinants.
Results
In all, 400 elderly Iranian were interviewed. The majority of the participants were men (56.5%) and almost half of the participants were illiterate (n = 199, 49.8%). Eighty-five percent of the elderly were living with their family or relatives and about 70% were married. Only 12% of participants evaluated their economic status as being good and most of people had moderate or poor economic status. The mean scores for the SF-36 subscales ranged from 70.0 (SD = 25.9) for physical functioning to 53.5 (SD = 29.1) for bodily pain and in general, the respondents significantly showed better condition on mental component of the SF-36 than its physical component (mean scores 63.8 versus 55.0). Performing uni-variate analysis we found that women reported significantly poorer HRQoL. Multiple logistic regression analysis showed that for the physical component summary score of the SF-36, age, gender, education and economic status were significant determinants of poorer physical health-related quality of life; while for the mental component summary score only gender and economic status were significant determinants of poorer mental health-related quality of life. The analysis suggested that the elderly people's economic status was the most significant predictor of their HRQoL.
Conclusion
The study findings, although with a small number of participants, indicate that elderly people living in Tehran, Iran suffer from relatively poor HRQoL; particularly elderly women and those with lower education. Indeed to improve quality of life among elderly Iranians much more attention should be paid to all aspects of their life including their health, and economic status.
doi:10.1186/1471-2458-8-323
PMCID: PMC2567978  PMID: 18808675
11.  The impact of biologics on health-related quality of life in patients with inflammatory bowel disease 
Background:
Inflammatory bowel disease (IBD) is characterized by a chronic relapsing inflammation of the gastrointestinal tract. Adult IBD patients suffer from a disabling disease which greatly affects health-related quality of life (HRQoL). A worse HRQoL in these patients may result in a defensive and ineffective use of medical attention and thus higher medical costs. Because of its chronic nature, IBD may also cause psychological problems in many patients which may also influence HRQoL and care-seeking behavior. An important factor reducing HRQoL is disease activity. Induction of remission and long-term remission are important goals for improving HRQoL. Furthermore, remission is associated with a decreased need for hospitalization and surgery and increased employment, which in turn improve HRQoL. Treatment strategies available for many years are corticosteroids, 5-aminosalicylates and immunnosuppressants, but these treatments did not show significant long-term improvement on HRQoL. The biologics, which induce rapid and sustained remission, may improve HRQoL.
Objective:
To review and evaluate the current literature on the effect of biologics on HRQoL of IBD patients.
Methods:
We performed a MEDLINE search and reviewed the effect of different biologics on HRQoL. The following subjects and synonyms of these terms were used: inflammatory bowel disease, Crohn’s disease, ulcerative colitis, quality of life, health-related quality of life, fatigue, different anti-TNF medication, and biologicals/biologics (MESH). Studies included were limited to English-language, adult population, full-text, randomized, double-blind, placebo-controlled in which HRQoL was measured.
Results:
Out of 202 identified articles, 8 randomized controlled trials (RCT) met the inclusion criteria. Two RCTs on infliximab showed significant improvement of HRQoL compared to placebo which was sustained over the long term. One RCT on adalimumab showed a significant and sustained improvement of HRQoL compared to placebo. This study showed also significant decrease of fatigue in the adalimumab-treated patients. Three RCTs on certolizumab showed a significant improvement of HRQoL in the intervention group compared to placebo. Two RCTs of natalizumab treatment were found. One study showed significant and sustained improvement compared to placebo, and also scores of HRQoL comparable to that in the general population, but in the other no significant results were found.
Conclusion:
The biologics infliximab, adalimumab, certolizumab, and natalizumab demonstrated significant improvement of HRQoL of IBD patients compared with placebo. However, we found differences in improvement of HRQoL between the different biologics.
PMCID: PMC3108643  PMID: 21694833
inflammatory bowel disease; health-related quality of life; health care costs; biologics
12.  Exploring health-related quality of life in eating disorders by a cross-sectional study and a comprehensive review 
BMC Psychiatry  2014;14:165.
Background
People with eating disorders (ED) often report poor health-related quality of life (HRQoL), which is explicitly correlated to illness’ severity and its effects on cognitive performance. We aimed to analyze health-related quality of life (HRQoL) in subgroups of eating disorder (ED) patients by using the brief version of WHOQoL questionnaire (WHOQoL-BREF) before treatment administration. Moreover, in order to compare our findings with other published data, we carried out a comprehensive review of the literature on HRQoL in ED patients.
Methods
Our review was carried out by means of an accurate data mining of PsychInfo and Medline databases and other available sources. In our cross-sectional study, eighty female ED patients (26 with bulimia nervosa, 33 with anorexia nervosa, 7 with binge eating disorder and 14 with ED not otherwise specified) completed the WHOQoL-BREF. HRQoL scores were compared among ED subgroups and clinical information (presence of previous contacts, length of illness, psychiatric comorbidity) was considered in the analysis.
Results
Our review shows that with few exceptions ED patients have a poorer HRQoL than the healthy population of control and sometimes the mental component of HRQoL is the most involved dimension. Moreover, there are no differences in the HRQoL among ED groups, even if AN patients in some studies have a lower HRQoL scores. Furthermore, BED patients have a poorer HRQoL than obese patients who do not have binge episodes. Finally, all treatments were positively correlated with an improvement on general and specific QoL dimensions. In our sample, ED subgroups differed only for Psychological Health HRQoL scores (F = 4.072, df = 3; p = 0.01). No differences were found between inpatients and outpatients, treatment naïve and previously treated patients and patients with or without psychiatric comorbidity. Moreover, HRQoL scores were not correlated to length of illness within each ED subgroup.
Conclusions
The analysis of the literature adds some relevant information on HRQoL in ED and may address the future research toward the exploration of specific questions. One of these may be the prominent role of Psychological Health domain in HRQoL, since our study confirms that this component is able to differentiate eating disorders.
doi:10.1186/1471-244X-14-165
PMCID: PMC4058000  PMID: 24898768
Eating disorders; Anorexia nervosa; Bulimia nervosa; Binge eating; HRQoL; Quality of life; WHOQoL-BREF; SF-36; Review
13.  A cross sectional assessment of health related quality of life among patients with Hepatitis-B in Pakistan 
Objective
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.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1186/1477-7525-10-91
PMCID: PMC3480955  PMID: 22866752
Health Related Quality of Life; Hepatitis B; Euroqol EQ-5D; Pakistan
14.  Favourable social functioning and health related quality of life of patients with JIA in early adulthood 
Annals of the Rheumatic Diseases  2005;64(6):875-880.
Objective: To evaluate the social functioning and health related quality of life (HRQoL) in patients with juvenile idiopathic arthritis (JIA) in early adulthood.
Methods: The patient files of the Rheumatism Foundation Hospital were screened to identify patients born in 1976–1980 diagnosed as having JIA. HRQoL was measured by the RAND 36-item health survey 1.0; spousal relationships and educational and employment status were assessed by questionnaire. The patients were invited to a follow up study. Age and sex matched controls from the community were identified in the Finnish population registry.
Results: Of 187 patients identified, 123 participated. Spousal relationships, educational level, and employment status were similar to controls. HRQoL in JIA patients was similar to controls except on the physical functioning scale. At follow up 35% of patients were in remission. Patients with active disease had poorer HRQoL in the physical component than those in remission or controls. The extended oligoarthritis group had the lowest physical and mental score in HRQoL compared with the other JIA subgroups. The patient's own evaluation was the explanatory factor in both the physical and mental component of HRQoL.
Conclusion: Social functioning and HRQoL were similar in JIA patients and age, sex, and municipality matched controls. However, patients with extended oligoarthritis attained significantly lower scores in the physical and mental component of HRQoL than oligo- or polyarthritis patients. Special attention in everyday care should be paid to those patients who have active disease or the extended oligoarthritis type of disease.
doi:10.1136/ard.2004.026591
PMCID: PMC1755522  PMID: 15897308
15.  Health-related quality of life in different stages of chronic kidney disease and at initiation of dialysis treatment 
Objectives
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.
Methods
Cross-sectional design with 535 patients in CKD stages 2–5 and 55 controls assessed for HRQoL through SF-36 together with biomarkers.
Results
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.
Conclusions
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.
doi:10.1186/1477-7525-10-71
PMCID: PMC3511211  PMID: 22710013
Quality of life; Health status; Chronic kidney disease; Cross-sectional studies; Comorbidity
16.  Quality of Life in GERD and Barrett’s Esophagus is Related to Gender and Manifestation of Disease 
Introduction
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.
Methods
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).
Results
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.
Conclusions
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.
doi:10.1038/ajg.2009.504
PMCID: PMC3073722  PMID: 19755967
Barrett esophagus; Gastroesophageal reflux; Erosive esophagitis; Non-erosive esophagitis; Quality of Life; Gender
17.  Quality of life is associated with physical activity and fitness in cystic fibrosis 
Background
Health-related and disease-specific quality of life (HRQoL) has been increasingly valued as relevant clinical parameter in cystic fibrosis (CF) clinical care and clinical trials. HRQoL measures should assess – among other domains – daily functioning from a patient’s perspective. However, validation studies for the most frequently used HRQoL questionnaire in CF, the Cystic Fibrosis Questionnaire (CFQ), have not included measures of physical activity or fitness. The objective of this study was, therefore, to determine the cross-sectional and longitudinal relationships between HRQoL, physical activity and fitness in patients with CF.
Methods
Baseline (n = 76) and 6-month follow-up data (n = 70) from patients with CF (age ≥12 years, FEV1 ≥35%) were analysed. Patients participated in two multi-centre exercise intervention studies with identical assessment methodology. Outcome variables included HRQoL (German revised multi-dimensional disease-specific CFQ (CFQ-R)), body composition, pulmonary function, physical activity, short-term muscle power, and aerobic fitness by peak oxygen uptake and aerobic power.
Results
Peak oxygen uptake was positively related to 7 of 13 HRQoL scales cross-sectionally (r = 0.30-0.46). Muscle power (r = 0.25-0.32) and peak aerobic power (r = 0.24-0.35) were positively related to 4 scales each, and reported physical activity to 1 scale (r = 0.29). Changes in HRQoL-scores were directly and significantly related to changes in reported activity (r = 0.35-0.39), peak aerobic power (r = 0.31-0.34), and peak oxygen uptake (r = 0.26-0.37) in 3 scales each. Established associates of HRQoL such as FEV1 or body mass index correlated positively with fewer scales (all 0.24 < r < 0.55).
Conclusions
HRQoL was associated with physical fitness, especially aerobic fitness, and to a lesser extent with reported physical activity. These findings underline the importance of physical fitness for HRQoL in CF and provide an additional rationale for exercise testing in this population.
Trial registration
ClinicalTrials.gov, NCT00231686
doi:10.1186/1471-2466-14-26
PMCID: PMC3942299  PMID: 24571729
Exercise testing; Oxygen uptake; Longitudinal analysis; Accelerometry; Questionnaire
18.  Health-Related Quality of Life in Veterans and Nonveterans with HIV/AIDS 
Journal of General Internal Medicine  2006;21(Suppl 5):S39-S47.
PURPOSE
To compare health-related quality of life (HRQoL) between patients receiving care in Veterans Administration (VA) settings (veterans) and non-VA settings (nonveterans), and to explore determinants of HRQoL and change in HRQoL over time in subjects living with HIV/AIDS.
SUBJECTS
One hundred veterans and 350 nonveterans with HIV/AIDS from 2 VA and 2 university-based sites in 3 cities interviewed in 2002 to 2003 and again 12 to 18 months later.
METHODS
We assessed health status (functional status and symptom bother), health ratings, and health values (time tradeoff [TTO] and standard gamble [SG] utilities). We also explored bivariate and multivariable associations of HRQoL measures with a number of demographic, clinical, spiritual/religious, and psychosocial characteristics.
RESULTS
Compared with nonveterans, the veteran population was older (47.7 vs 42.0 years) and consisted of a higher proportion of males (97% vs 83%), of participants with a history of injection drug use (23% vs 15%), and of subjects with unstable housing situations (14% vs 6%; P<.05 for all comparisons). On scales ranging from 0 (worst) to 100 (best), veterans reported significantly poorer overall function (mean [SD]; 65.9 [17.2] vs 71.9 [16.8]); lower rating scale scores (67.6 [21.7] vs 73.5 [21.0]), lower TTO values (75.7 [37.4] vs 89.0 [23.2]), and lower SG values (75.0 [35.8] vs 83.2 [28.3]) than nonveterans (P<.05 for all comparisons); however, in multivariable models, veteran status was only a significant determinant of SG and TTO values at baseline. Among other determinants that were associated with multiple HRQoL outcomes in baseline and follow-up multivariable analyses were: symptom bother, overall function, religiosity/spirituality, depressive symptoms, and financial worries.
CONCLUSIONS
Veterans reported significantly poorer HRQoL than nonveterans, but when controlling for other factors, veteran status was only a significant determinant of TTO and SG health values at baseline. Correlates of HRQoL such as symptom bother, spirituality/religiosity, and depressive symptoms could be fruitful potential targets for interventions to improve HRQoL in patients with HIV/AIDS.
doi:10.1111/j.1525-1497.2006.00644.x
PMCID: PMC1924783  PMID: 17083499
HIV; AIDS; quality of life; veterans
19.  Quality of life in rectal cancer patients after radical surgery: a survey of Chinese patients 
Background
We aimed to investigate the impact of sociodemographic and clinical characteristics on health-related quality of life (HRQoL) in disease-free survivors after radical surgery for rectal cancer in a Chinese mainland population.
Methods
We performed a cross-sectional survey from August 2002 to February 2011 by use of the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 and QLQ-CR38 questionnaires of 438 patients who underwent curative surgery for rectal cancer. Patients who were followed up for a minimum of 6 months, had no relevant major comorbidities and whose disease had not recurred were asked to complete both questionnaires. The impact of sociodemographic and clinical characteristics on HRQoL were compared by univariate and multivariate regression analyses.
Results
In total, 285 patients responded to the survey (response rate, 65.1%). Psychological-related HRQoL variables such as emotional function (P = 0.021) and future perspectives (P = 0.044) were poorer for younger patients than for older patients; and physiological-related HRQoL was reflected by physical function (P = 0.039), which was poorer for older patients than for younger patients. In terms of physiologic function and symptoms concerning HRQoL, such as pain (P = 0.002) and insomnia (P = 0.018), females had lower values than males. Low education and unemployment were associated with a worse HRQoL. HRQoL was worse for patients with stomas compared to those without, especially in psychosocial areas such as role function (P = 0.025), social function (P <0.001) and body image (P = 0.004). Financial HRQoL was worse for younger patients and patients with stoma.
Conclusions
HRQoL aspects and degrees to which they were impaired after curative surgery for rectal cancer were different when compared by many sociodemographic and clinical factors in Chinese mainland patients.
doi:10.1186/1477-7819-12-161
PMCID: PMC4059026  PMID: 24886668
Health-related quality of life; Rectal cancer; Surgery; Chinese
20.  Impact of recent life events on the health related quality of life of adolescents and youths: the role of gender and life events typologies in a follow-up study 
Background
Most studies on the effect of life events (LEs) have been carried out in convenience samples which cannot be considered representative of the general population. In addition, recent studies have observed that gender differences in the health related quality of life (HRQoL) impact of LEs might be lower than believed. We assessed the relationship between LEs and HRQoL in a representative sample of Spanish adolescents/youths, focusing on gender differences.
Methods
Participants (n = 840) completed the KIDSCREEN-27 to measure HRQoL at baseline and again after 3 years (n = 454). Follow-up assessment included the Coddington Life Events Scales (CLES) to measure LEs experiences in the previous 12 months. Respondents were categorized according to the amount of stress suffered. We calculated both the number of LEs and the Life Change Unit (LCU) score, a summary of the amount of stress inherent to the event and the time elapsed since occurrence. LEs were classified as desirable or undesirable, and family-related or extra-family. Effect sizes were calculated to evaluate changes in HRQoL. To assess the impact of LEs typologies, multiple linear regression models were constructed to evaluate their effect on HRQoL.
Results
Girls reported a mean 5.7 LEs corresponding to 141 LCUs, and boys 5.3 and 129, respectively. The largest impact of LEs on HRQoL was observed in the group of boys that reported to have lived more stress (third tertil of LCUs distribution). The linear association between LEs and HRQoL tended to be stronger among boys than girls, but the difference was not statistically significant. The effect on HRQoL was deemed important when undesirable events had been experienced. To have an important impact on HRQoL, 200 LCUs due to undesirable events were necessary in boys. In girls, slightly higher scores were necessary for a similar impact.
Conclusions
A moderate association was found between recent LEs and HRQoL, mainly among those who experienced several undesirable events that correspond to at least 200 LCUs. No gender differences were found in this association. Results may be useful for identifying adolescents with particular health risks, regardless of gender.
doi:10.1186/1477-7525-8-71
PMCID: PMC2914076  PMID: 20642830
21.  Validation study of the prototype of a disease-specific index measure for health-related quality of life in dementia 
Background
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.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1186/1477-7525-10-118
PMCID: PMC3503596  PMID: 23009579
Dementia; Health-related quality of life; Dementia Quality of life Instrument (DQI); Disease-specific index instrument; Cost-effectiveness
22.  Health-related quality of life, anxiety and depression in young adults with disability benefits due to childhood-onset somatic conditions 
Background
As the treatment of chronic or life-threatening diseased children has dramatically over recent decades, more and more paediatric patients reach adulthood. Some of these patients are successfully integrating into adult life; leaving home, developing psychosocially, and defining a role for themselves in the community through employment. However, despite careful guidance and support, many others do not succeed. A growing number of adolescents and young adults who have had a somatic disease or disability since childhood apply for disability benefits. The purpose of this study was to assess the health-related quality of life (HRQoL), anxiety and depression of young adults receiving disability benefits because of somatic conditions compared to reference groups from the general Dutch population and to explore factors related to their HRQoL, anxiety and depression.
Methods
Young adults (N = 377, 22–31 yrs, 64.3% female) claiming disability benefits completed the RAND-36 and an online version of the HADS. Differences between respondents and both reference groups were tested using analysis of variance and logistic regression analysis by group and age (and gender). Regression analyses were conducted to predict HRQoL (Mental and Physical Component Scale; RAND-36) and Anxiety and Depression (HADS) by demographic and disease-related variables.
Results
The respondents reported worse HRQoL than the reference group (−1.76 Physical Component Scale; -0.48 Mental Component Scale), and a higher percentage were at risk for an anxiety (29.7%) and depressive (17.0%) disorder. Better HRQoL and lower levels of anxiety and depression were associated with a positive course of the illness and the use of medical devices.
Conclusions
This study has found worse HRQoL and feelings of anxiety and depression experienced by young adults claiming disability benefits. Healthcare providers, including paediatric healthcare providers, should pay systematic attention to the emotional functioning of patients growing up with a somatic condition in order to optimise their emotional well-being and adaptation to society during their transition to adulthood. Future research should focus on emotional functioning in more detail in order to identify those patients that are most likely to develop difficulties in emotional functioning and who would benefit from specific psychosocial support aimed at workforce participation.
doi:10.1186/1753-2000-7-12
PMCID: PMC3636007  PMID: 23587404
Young adults; Chronic disease; Disability benefit; Health-related quality of life; Anxiety and depression; Work force participation
23.  Associations between demographic, disease related, and treatment pathway related variables and health related quality of life in primary care patients with coronary heart disease 
Background
Coronory heart disease (CHD) is a common medical problem worldwide that demands shared care of general practitioners and cardiologists for concerned patients. In order to improve the cooperation between both medical specialists and to optimize evidence-based care, a treatment pathway for patients with CHD was developed and evaluated in a feasibility study according to the recommendation for the development and evaluation of complex interventions of the British Medical Research Council (MRC). In the context of this feasibility study the objective of the present research was to investigate the contributions of different disease related (e.g. prior myocardial infarction), pathway related (e.g. basic medication) and demographic variables on patients` perceived health related quality of life (HRQoL) as a relevant and widely used outcome measure in cardiac populations.
Methods
Data assessing demographic, disease and pathway related variables of CHD patients included in the study were collected in a quasi-experimental design with three study arms (pathway developers, users, control group) via case record forms and questionnaires at baseline and after 6 and 12 (intervention groups), and 9 months (control group), respectively after the initial implementation on GP level. Additionally, at the same measuring points the CHD patients participating in the study were interviewed by phone regarding their perceived HRQoL, measured with the EuroQol EQ-5D as an index-based health questionnaire. Due to the hierarchical structure of the data, we performed cross-sectional and longitudinal linear mixed models to investigate the impact of disease related, pathway related and demographic variables on patients` perceived HRQoL.
Results
Of 334 initially recruited patients with CHD, a total of 290 were included in our analysis. This was an average 13.2% dropout rate from baseline assessment to the 12-month follow-up. At all assessment points, patients` HRQoL was associated with a variety of sociodemographic variables (e.g. gender, employment, education) in each study group, but there was no association with pathway related variables. In both cross-sectional and longitudinal analyses highest HRQoL values in patients were reported in the physician group that had developed the pathway. In the longitudinal analyses there were no significant changes in the reported HRQoL values of the three groups over time.
Conclusions
The found associations between sociodemographic variables and the perceived HRQoL of patients with CHD are in line with other research. As there are no associations of HRQoL with pathway related variables like the basic medication, possible weaknesses in the study design or the choice of outcome have to be considered before planning and conducting an evaluation study according to the MRC recommendations. Additionally, as patients in the developer group reported the highest HRQoL values over time, a higher commitment of the GPs in the developer group can be assumed and should be considered in further research.
doi:10.1186/1477-7525-10-78
PMCID: PMC3464887  PMID: 22776102
Coronary artery disease; Quality of life; Multilevel analyses; Critical pathways
24.  Assessing health-related quality-of-life changes in informal caregivers: an evaluation in parents of children with major congenital anomalies 
Quality of Life Research  2011;21(5):849-861.
Purpose
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.
Methods
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.
Results
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).
Conclusions
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.
doi:10.1007/s11136-011-9991-7
PMCID: PMC3348487  PMID: 21858419
Economic evaluation; Valuation of informal care; Methodology; Quality of life; Neonatal surgery
25.  Abatacept improves both the physical and mental health of patients with rheumatoid arthritis who have inadequate response to methotrexate treatment 
Annals of the Rheumatic Diseases  2006;66(2):189-194.
Objective
To examine the impact of added abatacept treatment on health related quality of life (HRQoL) in patients with rheumatoid arthritis (RA) who have inadequate response to methotrexate (MTX).
Methods
The impact of abatacept treatment on HRQoL was examined in a longitudinal, randomised double blind, placebo controlled clinical trial. Effects of treatment on HRQoL were examined using repeated measures analysis of covariance and comparing rates of change in HRQoL across treatment groups. The relationship between American College of Rheumatology (ACR) clinical markers and disease duration with changes in HRQoL indicators was also examined. Finally, a responder analysis was used to examine the percentage of patients who improved by 0.5 SD in 12 months or who reached the normative levels seen in the US general population.
Results
Statistically significant improvements in the abatacept group relative to controls were observed across a range of HRQoL measures, including physical function, fatigue, all eight domains of the SF‐36, and the physical and mental component summaries (PCS and MCS). Improvements were seen as early as day 29 for fatigue and for five out of eight SF‐36 domains. By day 169, all HRQoL measures were significantly better with abatacept than with placebo. HRQoL gains were associated with greater ACR clinical improvement, and the effects were consistent for patients with different disease duration. A significantly greater percentage of patients treated with abatacept reached normative levels of PCS, MCS, physical functioning, and fatigue compared with patients treated with MTX alone.
Conclusion
Combined abatacept and MTX treatment produces significant improvements across a wide range of HRQoL domains in patients with RA.
doi:10.1136/ard.2006.057018
PMCID: PMC1798514  PMID: 16984942
rheumatoid arthritis; abatacept; methotrexate; quality of life; patient‐reported outcomes

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