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Background: The Patient-Reported Outcomes Measurement and Information System (PROMIS®) global health items (global-10) yield physical and mental health scale scores and the PROMIS-Preference (PROPr) scoring system estimated from PROMIS domain scores (e.g., PROMIS-29 + 2) produces a single score anchored by 0 (dead or as bad as being dead) to 1 (full health). A link between the PROMIS global-10 and the PROPr is needed. Methods: The PROMIS-29 + 2 and the PROMIS global-10 were administered to 4102 adults in the Ipsos KnowledgePanel in 2022. The median age was 52 (range 18–94), 50% were female, 70% were non-Hispanic White, and 64% were married or living with a partner. The highest level of education completed for 26% of the sample was a high school degree or general education diploma and 44% worked full-time. We estimated correlations of the PROPr with the PROMIS global health items and the global physical and mental health scales. We examined the adjusted R2 and estimated correlations between predicted and observed PROPr scores. Results: Product-moment correlations between the PROMIS global health items and the PROPr ranged from 0.50 to 0.63. The PROMIS global physical health and mental health scale scores correlated 0.74 and 0.60, respectively, with the PROPr. The adjusted R2 in the regression of the PROPr on the PROMIS global health items was 64%. The equated PROPr preference scores correlated (product-moment) 0.80 (n = 4043; p < 0.0001) with the observed PROPr preference scores, and the intra-class correlation (two-way random effects model) was 0.80. The normalized mean absolute error (NMAE) was 0.45 (SD = 0.43). The adjusted R2 in the OLS regression of the PROPr on the PROMIS global health scales was 59%. The equated PROPr preference scores correlated (product-moment) was 0.77 (n = 4046; p < 0.0001) with the observed PROPr preference scores, and the intra-class correlation was 0.77. The NMAE was 0.49 (SD = 0.45). Conclusions: Regression equations provide a reasonably accurate estimate of the PROPr preference-based score from the PROMIS global health items or scales for group-level comparisons. These estimates facilitate cost-effectiveness research and meta-analyses. The estimated PROPr scores are not accurate enough for individual-level applications. Future evaluations of the prediction equations are needed. [ABSTRACT FROM AUTHOR]

Prioritizing health technologies requires comparisons of improvements in longevity or quality of life (QoL), or both. For this purpose, value sets are constructed that contain weights assigned to health states based on societal preferences. I show that how this is typically done may distort the results by giving unjustifiably larger impact to individuals who prioritize improvements in QoL over longevity. The problem results from equating the utility differences between being dead and full health across people, ignoring the fact that interpersonal utility comparisons are forbidden (or at least problematic) in economics. I propose another approach: the numerical value of maximal health gain (either in longevity or QoL) is assumed to be equal across individuals, to remove the impact of the range of utilities differing between people. I test this approach using EQ-5D-5L and EQ-5D-3L utilities elicited in Poland for two modeling techniques: a simple econometric model and a Bayesian one that accounts for censoring. The proposed approach increases the utilities of the worst health state: from - 0.41 to - 0.25 in EQ-5D-5L and from about - 0.54 to - 0.36 in EQ-5D-3L. In the Bayesian approach, the impact is greater: from - 0.45 to - 0.11 for EQ-5D-5L and from - 0.54 to - 0.22 for EQ-5D-3L. I discuss some normative arguments why the proposed approach may be more justifiable for aggregating individual preferences for health outcomes. [ABSTRACT FROM AUTHOR]

Purpose: To investigate the effect of systemic therapy on health-related quality of life (HRQoL) in patients with advanced esophagogastric cancer in daily clinical practice. This study assessed the HRQoL of patients with esophagogastric cancer during first-line systemic therapy, at disease progression, and after progression in a real-world context. Methods: Patients with advanced esophagogastric cancer (2014–2021) receiving first-line systemic therapy registered in the Prospective Observational Cohort Study of Oesophageal-gastric cancer (POCOP) were included (n = 335). HRQoL was measured with the EORTC QLQ-C30 and QLQ-OG25. Outcomes of mixed-effects models were presented as adjusted mean changes. Results: Results of the mixed-effect models showed the largest significant improvements during systemic therapy for odynophagia (− 18.9, p < 0.001), anxiety (− 18.7, p < 0.001), and dysphagia (− 13.8, p < 0.001) compared to baseline. After progression, global health status (− 6.3, p = 0.002) and cognitive (− 6.2, p = 0.001) and social functioning (− 9.7, p < 0.001) significantly worsened. At and after progression, physical (− 9.0, p < 0.001 and − 8.8, p < 0.001) and role functioning (− 15.2, p = 0.003 and − 14.7, p < 0.001) worsened, respectively. Trouble with taste worsened during systemic therapy (11.5, p < 0.001), at progression (12.0, p = 0.004), and after progression (15.3, p < 0.001). Conclusion: In general, HRQoL outcomes in patients with advanced esophagogastric cancer improved during first-line therapy. Deterioration in outcomes was mainly observed at and after progression. Implications for cancer survivors: Identification of HRQoL aspects is important in shared decision-making and to inform patients on the impact of systemic therapy on their HRQoL. [ABSTRACT FROM AUTHOR]

Purpose: Previous publications showed the effectiveness of exercise in adults with cancer receiving palliative care, but evidence for palliative care research on exercise is lacking. The purpose is to examine the effects of an exercise intervention on exercise capacity, physical function, and patient-reported outcome measures in adults with cancer receiving palliative care. Methods: We searched databases including EMBASE, PubMed, and Web of Science from inception until 2021. We used the Cochrane criteria to assess the risk of bias within studies. Using RevMan, mean difference (MD) and 95% confidence intervals or standardized mean difference (SMD) and 95% confidence intervals were calculated. Results: A total of 14 studies and 1034 adults with cancer receiving palliative care are included in this systematic review and meta-analysis. Half of the studies were deemed to have high risk of bias. All of the interventions used aerobic and/or resistance exercises. The results indicated that exercise interventions significantly improved exercise capacity (mean difference: 46.89; 95% confidence interval: 4.51 to 89.26; Z = 2.17; P = 0.03), pain (standardized mean difference: − 0.29; 95% confidence interval: − 0.54 to − 0.03; Z = 2.18; P = 0.03), fatigue (standardized mean difference: − 0.48; 95% confidence interval: − 0.83 to − 0.12; Z = 2.66; P = 0.008), and quality of life (standardized mean difference: 0.23; 95% confidence interval: 0.02 to 0.43; Z = 2.12; P = 0.03). Conclusion: Exercise training, with aerobic exercise, resistance exercise, or combined aerobic and resistance exercise, helps to maintain or improve exercise capacity, pain, fatigue, and quality of life in adults with cancer receiving palliative care. [ABSTRACT FROM AUTHOR]

Purpose: Hemodialysis has become a standard therapy for adults with end-stage renal diseases. Adults undergoing hemodialysis have to cope with unique psychological issues that make their care journey particularly fatiguing. In this systematic review and meta-analysis, we aimed to summarize and evaluate the effects of psychosocial interventions on the reduction of anxiety and depression in adults with HDs. Methods: We included randomized controlled trials and quasi-experimental studies that measure change in depression, anxiety, and quality of life. Results: We identify three categories of psychosocial interventions delivered to adults undergoing hemodialysis. Based on our analysis, there was a medium effect of psychosocial intervention on depression (SMD − 0.85, 95%CI − 1.17; − 0.52, I2 = 80%, p < 0.01) and anxiety (SMD − 0.99, 95%CI − 1.65; − 0.33, I2 = 88%, p < 0.01) in adults undergoing hemodialysis. Conclusions: Psychosocial interventions, such as psychological support or relaxation-based therapy, seems all to reduce depression and anxiety in adults undergoing HD. Preliminary evidence suggests that there may be a benefit of psychosocial interventions on the quality of life for adults undergoing HD. [ABSTRACT FROM AUTHOR]

Background: Hearing loss significantly impacts health-related quality of life (QoL), yet the effects of current treatments on QoL utility remain uncertain. Our objective was to describe the impact of untreated and treated hearing loss on QoL utility to inform hearing healthcare policy. Methods: We searched databases for articles published through 02/01/2021. Two independent reviewers screened for articles that reported elicitation of general QoL utility values for untreated and treated hearing loss health states. We extracted data and quality indicators from 62 studies that met the inclusion criteria. Results: Included studies predominately used observational pre/post designs (61%), evaluated unilateral cochlear implantation (65%), administered the Health Utilities Index 3 (HUI3; 71%), and were conducted in Europe and North America (84%). In general, treatment of hearing loss improved post-treatment QoL utility when measured by most methods except the Euro-QoL 5 dimension (EQ-5D). In meta-analysis, hearing aids for adult mild-to-moderate hearing loss compared to no treatment significantly improved HUI3-estimated QoL utility (3 studies; mean change=0.11; 95% confidence interval (CI): 0.07 to 0.14) but did not impact EQ-5D-estimated QoL (3 studies; mean change=0.0; 95% CI: −0.03 to 0.04). Cochlear implants improved adult QoL utility 1-year post-implantation when measured by the HUI3 (7 studies; mean change=0.17; 95% CI: 0.11 to 0.23); however, pediatric VAS-estimated QoL utility was non-significant (4 studies; mean change=0.12; 95% CI: −0.02 to 0.25). The quality of included studies was limited by failure to report missingness of data and low survey response rates. Our study was limited by heterogeneous study populations and designs. Findings: Treatment of hearing loss significantly improves QoL utility, and the HUI3 and VAS were most sensitive to improvements in hearing. Improved access to hearing healthcare should be prioritized. Systematic Review Registration: PROSPERO: CRD42021253314 [ABSTRACT FROM AUTHOR]

Purpose: To quantify and understand how to assess the quality of life and health-related QoL of parents with children with congenital abnormalities. Methods: We conducted a systematic review with meta-analysis. The search was carried out in 5 bibliographic databases and in ClinicalTrials.gov. No restriction on language or date of publication was applied. This was complemented by references of the studies found and studies of evidence synthesis, manual search of abstracts of relevant congresses/scientific meetings and contact with experts. We included primary studies (observational, quasi-experimental and experimental studies) on parents of children with CA reporting the outcome quality of life (primary outcome) of parents, independently of the intervention/exposure studied. Results: We included 75 studies (35 observational non-comparatives, 31 observational comparatives, 4 quasi-experimental and 5 experimental studies). We identified 27 different QoL instruments. The two most frequently used individual QoL instruments were WHOQOL-Bref and SF-36. Relatively to family QoL tools identified, we emphasized PedsQL FIM, IOFS and FQOL. Non-syndromic congenital heart defects were the CA most frequently studied. Through the analysis of comparative studies, we verified that parental and familial QoL were impaired in this population. Conclusions: This review highlights the relevance of assessing QoL in parents with children with CA and explores the diverse QoL assessment tools described in the literature. Additionally, results indicate a knowledge gap that can help to draw new paths to future research. It is essential to assess QoL as a routine in healthcare providing and to implement strategies that improve it. [ABSTRACT FROM AUTHOR]

Purpose: The ICEpop CAPability measure for Adults (ICECAP-A) assesses five capabilities that are important to one's well-being. The instrument might be an important addition to generic health questionnaires when evaluating quality of life extending beyond health. This study aimed to conduct a psychometric assessment of the Dutch translation of the ICECAP-A. Methods: Construct validity of the instrument was assessed in two ways. First, by measuring correlations with the EQ-5D-5L questionnaire and a measure of self-efficacy and, second, by investigating the ability to distinguish between groups known to differ on the construct the ICECAP-A means to capture. Additionally, test–retest reliability was evaluated. Results: In total, 1002 participants representative of the general Dutch population completed an online survey. For test–retest reliability, 252 participants completed the same questionnaire 2 weeks later. The ICECAP-A indicated moderate to strong correlations with the EQ-5D-5L and a strong correlation with self-efficacy. Furthermore, it was capable of differentiating known groups. Moreover, results indicated adequate test–retest reliability with an intraclass correlation coefficient of 0.79. Conclusion: In summary, results suggest adequate test–retest reliability and construct validity and indicate that the ICECAP-A might be of added value, especially when considering areas outside of the traditional health intervention model. [ABSTRACT FROM AUTHOR]

Background: Capability well-being captures well-being based on people's ability to do the things they value in life. So far, no capability well-being measures have been validated in dermatological patients. Objectives: To validate the adult version of the ICEpop CAPability measure (ICECAP-A) in patients with dermatological conditions. We aimed to test floor and ceiling effects, structural, convergent and known-group validity, and measurement invariance. Methods: In 2020, an online, cross-sectional survey was carried out in Hungary. Respondents with self-reported physician-diagnosed dermatological conditions completed the ICECAP-A, Satisfaction with Life Scale (SWLS), WHO-5 Well-Being Index and two dermatology-specific measures, Dermatology Life Quality Index (DLQI) and Skindex-16. Results: 618 respondents (mean age 51 years) self-reported a physician-diagnosed dermatological condition, with warts, eczema, onychomycosis, acne and psoriasis being the most common. ICECAP-A performed well with no floor and mild ceiling effects. The violation of local independence assumption was found between the attributes of 'attachment' and 'enjoyment'. ICECAP-A index scores correlated strongly with SWLS and WHO-5 (rs = 0.597–0.644) and weakly with DLQI and Skindex-16 (rs = − 0.233 to − 0.292). ICECAP-A was able to distinguish between subsets of patients defined by education and income level, marital, employment and health status. Multigroup confirmatory factor analysis indicated measurement invariance across most of these subgroups. Conclusions: This is the first study to validate a capability well-being measure in patients with dermatological conditions. The ICECAP-A was found to be a valid tool to assess capability well-being in dermatological patients. Future work is recommended to test measurement properties of ICECAP-A in chronic inflammatory skin conditions. [ABSTRACT FROM AUTHOR]

Introduction: The lack of effective, scalable solutions for lifestyle treatment is a global clinical problem, causing severe morbidity and mortality. Digital tools could enable broad utility, but long-term metabolic outcomes and the influence on quality of life are unclear. Methods: We developed a new method for lifestyle treatment that promotes self-reflection and iterative behavioural change, provided as a digital tool, and evaluated its effect on glycaemic control in patients with type 2 diabetes with HbA1c below 52 mmol/mol (n = 297). As a secondary analysis, its effect on quality of life (using SF-12) was examined in both participants with and without diabetes (total n = 1914). The tool was evaluated during a 12-week randomization period to assess the existence of effect, with a subsequent open-label follow-up to study long-term outcomes. Results: Participants were randomized to wait or access the intervention tool. The mean difference in HbA1c was 2 mmol/mol (95% CI − 4 to 0; P = 0.02) after 12 weeks in participants with type 2 diabetes. The groups were then merged to enable all participants to use the tool. The mean HbA1c reduction from baseline in patients with type 2 diabetes using the tool was 2 mmol/mol compared with matched controls (95% CI − 3 to 0; P = 0.005). In users with HbA1c above 45 mmol/mol, the mean difference between the groups was 4 mmol/mol (95% CI − 7 to − 2). The improvements were sustained during the follow-up of 1 year on average. Users of the tool also had improved quality of life from baseline to 6 months, mainly observed in non-diabetic participants. Conclusion: The tool does not require in-person reinforcement or increased healthcare resources, and the marginal cost is fundamentally lower than pharmacological treatment and most existing lifestyle interventions. The results therefore open a new means for self-managed lifestyle treatment with long-term metabolic efficacy that can benefit large numbers of people. Trial Registration: ClinicalTrials.gov NCT04624321 and NCT05006508. [ABSTRACT FROM AUTHOR]

Purpose: We examined the association between health-related quality of life (HRQoL) of pediatric patients during hospitalization for allogeneic hematopoietic cell transplantation (HCT) and length of hospital stay, and 1-year survival.Methods: Primary family caregivers were proxy-assessors for the Pediatric Quality of Life (PedsQL) Stem Cell Transplant Module at three time points: 5-days pre-HCT (T0); 14-days post-HCT (engraftment, T1); and 1-week before hospital discharge (T2). Cox regression analyses determined predictors of the overall 1-year survival after allogeneic HCT.Results: Thirty-nine eligible caregivers completed all assessments. The mean age of the pediatric patients was 9.07 years (SD = 5.2). PedsQL Stem Cell Transplant Module scores decreased from 71.33 (SD = 13.26) at T0 to 55.41(SD = 13.05) at T1 (p < 0.001) and increased to 68.46 (SD = 13.97) at T2 (p < 0.001). There was no significant difference between scores at T0 and T2. Longer length of hospital stay was associated with children who were younger and had greater relative changes in scores on the caregiver-proxy PedsQL Stem Cell Transplant Module from T0 to T1. PedsQL Stem Cell Transplant Module scores ≥ 58.07 at T2 were associated with higher 1-year survival rates (Hazard Ratio = 0.12, 95% Confidence Interval = 0.02-0.78; p = 0.03).Conclusion: Our findings suggest that assessment of HRQoL during early HCT can add prognostic value beyond demographic and HCT factors. Understanding the HRQoL status during hospitalization for HCT could help identify pediatric patients with low prospects of 1-year survival in order to provide support interventions to improve HRQoL and survival rates. [ABSTRACT FROM AUTHOR]

Purpose: Idiopathic pulmonary fibrosis (IPF) is a progressive and universally fatal lung disease, characterised by increasing fibrosis of the lung parenchyma. In this study, we aimed to quantify the health state utility values (HSUVs) for Australians with IPF and to identify the factors affecting these HSUVs. Methods: Participants of the Australian IPF Registry (AIPFR), with data on EuroQoL five dimension—five level (EQ-5D-5L) profiles were included. Pulmonary function tests (PFTs) were used to assess disease severity using three IPF -based classification systems. Stepwise multivariable linear regression models assessed the relationship between HSUVs and important demographic and clinical parameters.Query Results: A total of 155 participants provided data for the analysis of HSUVs. For our base case, HSUVs ranged from − 0.57 to 1.00. Mean HSUVs for all participants was 0.65 (95% CI 0.61–0.70). In general, HSUVs decreased with increasing disease severity under all disease severity classification systems. Multivariable linear regression demonstrated a negative association between HSUVs, disease severity and having more than 2 comorbidities. Conclusions: Our study has shown that EQ-5D-5L has exhibited discriminatory sensitivity for the study population. We have demonstrated that disease severity and having more than two comorbidities was associated with lower HSUVs in Australians with IPF. Our findings support early diagnosis and appropriate evidence-based treatment to slow or prevent IPF progression; and identification and treatment of associated comorbidities to potentially improve health-related quality of life in people with IPF. [ABSTRACT FROM AUTHOR]

Whether doing the shopping, or driving the car – to navigate daily life, our brain has to rapidly identify relevant color signals among distracting ones. Despite a wealth of research, how color attention is dynamically adjusted is little understood. Previous studies suggest that the speed of feature attention depends on the time it takes to enhance the neural gain of cortical units tuned to the attended feature. To test this idea, we had human participants switch their attention on the fly between unpredicted target color alternatives, while recording the electromagnetic brain response to probes matching the target, a non-target, or a distracting alternative target color. Paradoxically, we observed a temporally prioritized processing of distractor colors. A larger neural modulation for the distractor followed by its stronger attenuation expedited target identification. Our results suggest that dynamic adjustments of feature attention involve the temporally prioritized processing and elimination of distracting feature representations. In order to investigate underlying mechanisms of color attention, Bartsch et al measured electromagnetic brain responses in participants who were challenged to switch their attention in accordance with unpredicted target colors changes in the absence or presence of 'distractor colors'. They demonstrated that dynamic adjustments of feature attention involve the temporally prioritized processing and elimination of distracting feature representations. [ABSTRACT FROM AUTHOR]

Background: Quality of life measures going beyond health, like the ICECAP-A, are gaining importance in health technology assessment. The assessment of the monetary value of gains in this broader quality of life is needed to use these measurements in a cost-effectiveness framework. Methods: We applied the well-being valuation approach to calculate a first monetary value for capability well-being in comparison to health, derived by ICECAP-A and EQ-5D-5L, respectively. Data from an online survey administered in February 2018 to a representative sample of UK citizens aged 18–65 was used (N = 1512). To overcome the endogeneity of income, we applied an instrumental variable regression. Several alternative model specifications were calculated to test the robustness of the results. Results: The base case empirical estimate for the implied monetary value of a year in full capability well-being was £66,597. The estimate of the monetary value of a QALY, obtained from the same sample and using the same methodology amounted to £30,786, which compares well to previous estimates from the willingness to pay literature. Throughout the conducted robustness checks, the value of capability well-being was found to be between 1.7 and 2.6 times larger than the value of health. Conclusion: While the applied approach is not without limitations, the generated insights, especially concerning the relative magnitude of valuations, may be useful for decision-makers having to decide based on economic evaluations using the ICECAP-A measure or, to a lesser extent, other (capability) well-being outcome measures. [ABSTRACT FROM AUTHOR]

Purpose: CINV remains a distressing side effect experienced by glioma patients receiving multi-day temozolomide therapy, in spite of guideline-based antiemetic therapy with selective serotonin-receptor-antagonists. Antiemetic research with aprepitant has routinely excluded glioma patients. In this randomized open-label phase II study, use of a nonstandard 5-day regimen of aprepitant for glioma patients was investigated.Methods: One hundred thirty-six glioma patients receiving their first cycle of adjuvant temozolomide (150-200 mg/m2/day × 5 days every 28 days) were randomized to Arm-A (ondansetron 8 mg days 1-5 with aprepitant day 1: 125 mg, days 2-5: 80 mg) or Arm-B (ondansetron). Randomization was stratified by tumor grade and number of prior chemotherapy regimens. The primary endpoint was the percentage of patients achieving complete control (CC), defined as no emetic episode or antiemetic rescue medication over the 7-day study period. Secondary endpoints included CINV efficacy in the acute phase (≤ 24 h) and delayed phase (days 2-7), as well as safety and quality of life (QoL).Results: Patients were 61% male, 97% white, 48% with KPS > 90%, 60% non-smokers, mean age 54, 92% with low alcohol use, and 46% with a CINV history. The CC was 58.6% (Arm-A) and 54.5% (Arm-B). Acute-complete response (CR) rates, defined as CC on day 1 in Arm-A and -B, were 97.1% and 87.9%, respectively (p = 0.056). Treatment-related toxicities were mild or moderate in severity.Conclusions: Aprepitant plus ondansetron may increase acute-CR, may have benefit regarding CINV's effect on QoL, and is safe for 5-day temozolomide compared to ondansetron. This study provides no evidence that aprepitant increases CC rate over ondansetron alone. [ABSTRACT FROM AUTHOR]

Purpose: To investigate the test-retest reliability of Investigating Choice Experiments Capability measure for Adults (ICECAP-A) in the adult Danish population.Methods: The original English ICECAP-A was translated into Danish by forward-backwards translation using the guidelines by Beaton et al. Three hundred and-thirty-two participants with mean age of 57 years participated in a Web-based study. Data concerning relative and absolute agreement were analysed by the intra-class correlation coefficient and Bland-Altman plot with limits of agreement. The overall and item consistency was investigated by weighted kappa statistics from baseline to 2-week follow-up. Logistic regression was used to study the effect of the sociodemographic characteristics with inconsistent responses as the dependent binary variable. The independent variables were age, sex, education, income, and region of residence at baseline.Results: The baseline ICECAP-A preference-based index score was 0.84, and at follow-up, 0.83. The ICC was 0.86 (95% CI 0.826-0.884), and limits of agreement were 0.164 and - 0.151. The kappa coefficient ranges from 45 to 65%, between random and perfect agreement. The logistic regression to analyse inconsistent responses showed no significant association between the overall index score and sociodemographic characteristics, and no clear pattern was found concerning the individual item inconsistency.Conclusions: Evidence regarding the reliability of the Danish version of ICECAP-A is satisfactory for both the index score agreement and the individual item consistency and is a reliable measure to be used in a Danish context and future health economic evaluations. [ABSTRACT FROM AUTHOR]

Purpose: The OxCAP-MH capabilities questionnaire was developed and validated in the UK for outcome measurement in mental health clinical studies. Its broader wellbeing construct or validity in routine mental health services so far has not been assessed. The objectives were to investigate the extent the OxCAP-MH measures broader wellbeing compared to the EQ-5D-5L and to test psychometric properties of the German language OxCAP-MH in routine mental health services in Austria.Methods: Study sample consisted of patients in socio-psychiatric services (n = 159) assessed at baseline and 6-month follow-up. Underlying factors associated with quality-of-life/wellbeing concepts measured by the OxCAP-MH and EQ-5D-5L were identified in exploratory factor analysis (EFA). Responsiveness was assessed using anchor questionnaires and standardised response mean (SRM). For discriminant validity, subgroups of respondents were compared using t test and one-way ANOVA. Test-retest analysis was assessed for a period of maximum 30 days from the baseline assessment with intra-class correlation coefficient (ICC).Results: EFA identified a two-factor structure. All EQ-5D-5L items and seven OxCAP-MH items loaded on one factor and nine remaining OxCAP-MH items loaded on a separate factor. Responsiveness was found for patients who improved in anchor questionnaire scores with large or moderate SRM statistics. OxCAP-MH discriminated between various groups in univariable and multivariable analyses. Reliability of the German language OxCAP-MH was confirmed by ICC of 0.80.Conclusions: Besides providing evidence that the OxCAP-MH measures broader wellbeing constructs beyond traditional health-related quality of life, the study also confirms the validity of the instrument for implementation in routine evaluation of mental health services. [ABSTRACT FROM AUTHOR]

Purpose: This meta-analytic review aimed to estimate the magnitude of health-related quality of life (HrQoL) impairments, as assessed by the KIDSCREEN questionnaires, both self- and parent-reported, in 8- to 18-years-old children/adolescents with chronic health conditions.Methods: To identify studies using the KIDSCREEN questionnaires, three electronic databases (PubMed, PsycINFO, EBSCOhost Psychology & Behavioral Sciences) were searched. The final search (February 14-15, 2018) revealed 528 non-duplicated articles, of which 23 papers (21 studies) directly compared the HrQoL of pediatric patients to community/healthy controls and were included in the meta-analysis. Pooled mean differences (MD) with 95% CIs were estimated using the inverse-variance random-effects method.Results: Of the 21 studies, 16 used self-reports, one used parent-reports and four adopted a multi-informant approach. Self-reported data were retrieved from 20 studies (4852 cases/28,578 controls), and parent-reported data were retrieved from four studies (511 cases/433 controls). Pediatric patients presented significant HrQoL impairments in the domains of physical well-being (MD = - 4.84, 95% CI - 6.44/- 3.24 for self-reports; MD = - 6.86, 95% CI - 10.42/- 3.29 for parent-reports) and peers and social support (MD = - 1.29, 95% CI - 2.25/- 0.34 for self-reports; MD = - 3.90, 95% CI - 5.28/- 2.52 for parent-reports), compared to community/healthy peers. Between-studies heterogeneity was explained by diagnostic categories, instrument version and informants.Conclusions: The identification of significant HrQoL impairments among pediatric patients, specifically in the physical and social domains, highlights the importance of routine psychosocial assessment and intervention in primary pediatric healthcare services. Specific recommendations include the use of profile measures, both self- and parent-reports, and the prioritization of oncology, endocrinology and neurology services. [ABSTRACT FROM AUTHOR]

Purpose: So far there is no Norwegian value algorithm to inform healthcare decision making. The 15D health state values estimated with the original 15D valuation procedure tend to be higher than the values of other generic preference-based health-related quality of life (HRQoL) instruments. The main purpose of this study was to use a new 15D valuation procedure to estimate Norwegian 15D health state values and to explore their empirical performance.Methods: The visual analogue scale was used to collect 15D valuation data in a representative sample of the Norwegian general population. The new procedure used fewer valuation tasks and anchored the 15D health state values in an empirically assessed range. The Norwegian 15D health state values were compared to the values of five HRQoL instruments which were provided by Norwegian residents belonging to seven disease groups and a healthy population.Results: The Norwegian 15D health state values ranged from 1 to - 0.52. Compared to 15D health state values estimated with the original procedure, the Norwegian 15D health state values were lower and more in line with values of other HRQoL instruments.Conclusions: The new 15D valuation procedure is simpler, links the 15D health state values better to the requirements of the QALY model, and provides an empirically-based range. We recommend using the new valuation procedure in future 15D valuation studies, and the Norwegian health state values for use in 15D-based health economic analyses in Norway. [ABSTRACT FROM AUTHOR]

Perceived capabilities-a subjective operationalization of Sen's concept of capability-and subjective well-being are increasingly regarded as relevant information about individual well-being to guide resources allocation in healthcare. Although they refer to different notions, both types of measures rely on self-reported information and little is known as to how they compare together empirically. The aim of this paper is to investigate differences between measures of subjective well-being and of perceived capabilities in terms of their correlation with dimensions of health-related quality of life using panel data concerning a sample of 293 breast cancer and melanoma patients. Regression analyses suggest that the measures capture quite different aspects of the patients' welfare. Differences in the correlation with dimensions of health also seem consistent with the underlying notions to which these measures refer. However, our findings also suggest that future researches should aim at determining how measures of perceived capabilities may be influenced by individual personality traits. [ABSTRACT FROM AUTHOR]

The Investigating Choice Experiments Capability Measure (ICECAP) is a new preference-based measure of the extent to which a person is able to achieve attributes or capabilities related to the quality of life. Conceptually, it differs from health-related quality of life (HRQoL) as the focus is upon the ability or capacity to achieve as distinct from the current experience of the attributes. The objective of this study was to explore the empirical relationships between capability as assessed by the ICECAP for Adults (ICECAP-A) and HRQoL as assessed by the Assessment of Quality of Life (AQoL)-8D and the five-level EuroQol Five Dimensions questionnaire (EQ-5D). To compare these measures, the study employed self-reported survey data from the healthy public and from seven disease areas in five countries. Results indicate that, despite their conceptual origins, the ICECAP-A is strongly associated with the AQoL-8D and that the clear distinction between capabilities and HRQoL found in other studies is attributable to the use of the EQ-5D in the comparison and the weaker association between the EQ-5D and ICECAP-A. The suggestion that ICECAP-A should be included in evaluation studies along with a HRQoL instrument is more persuasive when the instrument is the EQ-5D. The case for its inclusion with other HRQoL instruments requires further research and evaluation. [ABSTRACT FROM AUTHOR]

Background: Mindfulness training is a promising treatment approach in adult ADHD. However, there has not yet been a randomized controlled trial comparing mindfulness to an active control condition. In this study, we assessed the efficacy of a mindfulness training program (MAP) compared to structured psychoeducation (PE).Methods: After randomization 81 medication-free adult ADHD patients participated either in an 8-week MAP or PE group program. At baseline (T1), after 8 weeks (T2) and after 8 months (T3), severity of ADHD and associated symptoms (depression, general psychopathology, quality of life) were measured with the Conner’s ADHD Rating Scales (CAARS), the Beck Depression Inventory (BDI), the Brief Symptom Inventory (BSI) and the SF-36 by self and blind observer ratings.Results: Both groups showed significant pre-post improvements in observer-rated Inattention scale (p < .001, partial η2 = 0.18) and in associated symptomatology, which persisted through 6 months of follow-up. There were no significant differences regarding symptom reduction between the treatment groups. Women benefited more compared to men irrespective of treatment group. Men showed the most pronounced changes under MAP.Conclusions: In the current study, MAP was not superior to PE regarding symptom reduction in adult ADHD. Both interventions, mindfulness meditation and PE, were efficacious in reducing symptom load in adult ADHD. Furthermore in exploratory post hoc tests the study provides evidence for a potential gender-specific treatment response in adult ADHD. [ABSTRACT FROM AUTHOR]

Purpose: The English NHS has mandated the routine collection of health-related quality of life (HRQoL) data before and after surgery, giving prospective patient information about the likely benefit of surgery. Yet, the information is difficult to access and interpret because it is not presented in a lay-friendly format and does not reflect patients' individual circumstances. We set out a methodology to generate personalised information to help patients make informed decisions.Methods: We used anonymised, pre- and postoperative EuroQol-5D-3L (EQ-5D) data for over 490,000 English NHS patients who underwent primary hip or knee replacement surgery or groin hernia repair between April 2009 and March 2016. We estimated linear regression models to relate changes in EQ-5D utility scores to patients' own assessment of the success of surgery, and calculated from that minimally important differences for health improvements/deteriorations. Classification tree analysis was used to develop algorithms that sort patients into homogeneous groups that best predict postoperative EQ-5D utility scores.Results: Patients were classified into between 55 (hip replacement) to 60 (hernia repair) homogeneous groups. The classifications explained between 14 and 27% of variation in postoperative EQ-5D utility score.Conclusions: Patients are heterogeneous in their expected benefit from surgery, and decision aids should reflect this. Large administrative datasets on HRQoL can be used to generate the required individualised predictions to inform patients. [ABSTRACT FROM AUTHOR]

Background: There is a debate in the health economics literature concerning the most appropriate way of applying Amartya Sen's capability approach in economic evaluation studies. Some suggest that quality-adjusted life years (QALYs) alone are adequate while others argue that this approach is too narrow and that direct measures of capability wellbeing provide a more extensive application of Sen's paradigm.Objective: This paper empirically explores whether QALYs provide a good proxy for individual capabilities.Methods: Data is taken from a multinational cross-sectional survey of individuals with seven health conditions (asthma, arthritis, cancer, depression, diabetes, hearing loss, heart disease) and a healthy population. Each individual completed the ICECAP-A measure of capability wellbeing for adults and six health utility instruments that are used to generate QALYs, including EQ-5D and SF-6D. Primary analysis examines how well health utility instruments can explain variation in the ICECAP-A using ordinary least squares regression.Results: The findings show that all seven health conditions have a negative association on overall capability as measured by the ICECAP-A index. Inclusion of health utility instruments into separate regressions improves the predictive power of capability but on average, explains less than half of the variation in capability wellbeing. Individuals with arthritis appear to be less inhibited in terms of capability losses when accounting for health utility, yet those who have depression record significant reductions in capability relative to the healthy population even after accounting for the most commonly used health utility instruments.Conclusion: The study therefore casts doubt on the ability of QALYs to act as a reliable proxy measure of individuals' capability. [ABSTRACT FROM AUTHOR]

Purpose: To evaluate stool habits and associated quality of life (QoL) in a matched pair analysis of patients who underwent continent cutaneous diversion using the ileocecal segment [Mainz pouch I (MzPI)] with an intussuscepted ileal nipple as efferent segment with those receiving an ileal conduit (IC) after radical cystectomy. Methods: We identified 250 patients who underwent radical cystectomy and urinary diversion (UD) with either MzPI with an ileal nipple or IC in our database. A detailed history of stool habits using the modified Wexner score was obtained, and questions addressing general lifestyle, comparison of symptom differences before and after surgery considering bowel function as well as bowel-associated QoL were assessed. Results: Forty-five age- and sex-matched pairs could be compared. Overall, stool incontinence ( p = 0.481) and the Wexner score ( p = 0.464) revealed no differences between both groups. However, patients with MzPI as compared to those with IC had significant higher rates of stool frequency (53 vs 31 %), softer stool consistencies (60 vs 13 %), diarrhea (62 vs 20 %) and a lower rate of constipation (4 vs 22 %). Patients with MzPI had a trend toward lower bowel-associated QoL compared with patients with IC. Similarly, the MzPI group reported a significantly impaired overall postoperative QoL (51 %) compared to the IC group (29 %) ( p = 0.024). Conclusions: Patients following UD by MzPI have an increased stool frequency and softer stool consistency. However, there is no difference between both groups in terms of de novo stool incontinence. Change in bowel habits should be part of preoperative informed consent in any kind of UD. Careful patient selection is of paramount importance. [ABSTRACT FROM AUTHOR]

Purpose: To examine the extent to which EQ-5D utility scores capture the effect of mental and physical health status on life satisfaction (LS) in older adults.Methods: Retrospective cohort study of 884 patients aged ≥70 years from 15 general practices in Ireland, including medical records, pharmacy claims, and self-completion questionnaire. Path analysis was used to evaluate the direct and indirect effects of: (1) chronic disease burden (based on medications data); (2) activity limitation (basic and instrumental activities of daily living); (3) anxiety symptoms and; (4) depressive symptoms (Hospital Anxiety and Depression Scale) on LS (Life Satisfaction Index Z), via a utility score based on responses to the EQ-5D scale. Utility scores were calculated using UK time trade-off utility weights. Covariates included age and socioeconomic status.Results: The final path model fitted the data well (goodness of fit χ2 = 7.5, df (7), p = 0.37). The direct effects of chronic disease burden and disability on LS were not statistically significant and were excluded from the final model, indicating that EQ-5D score mediated 100% of the total effect on LS. The direct and indirect effects of anxiety and depression on LS were statistically significant, but the size of the indirect effect was small (4% of the total effect for anxiety and 6% of the total effect for depression).Conclusion: The EQ-5D does not adequately capture the effects of anxiety and depression on LS among older adults, suggesting that it may lead to inaccurate assessments of the effectiveness of interventions in this cohort. [ABSTRACT FROM AUTHOR]

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Objective: To critically appraise and compare the measurement properties of self-administered patient-reported outcome measures (PROMs) focussing on the shoulder, assessing "activity limitations."Study Design: Systematic review. The study population had to consist of patients with shoulder pain. We excluded postoperative patients or patients with generic diseases. The methodological quality of the selected studies and the results of the measurement properties were critically appraised and rated using the COSMIN checklist.Results: Out of a total of 3427 unique hits, 31 articles, evaluating 7 different questionnaires, were included. The SPADI is the most frequently evaluated PROM and its measurement properties seem adequate apart from a lack of information regarding its measurement error and content validity.Conclusion: For English, Norwegian and Turkish users, we recommend to use the SPADI. Dutch users could use either the SDQ or the SST. In German, we recommend the DASH. In Tamil, Slovene, Spanish and the Danish languages, the evaluated PROMs were not yet of acceptable validity. None of these PROMs showed strong positive evidence for all measurement properties. We propose to develop a new shoulder PROM focused on activity limitations, taking new knowledge and techniques into account. [ABSTRACT FROM AUTHOR]

Purpose: Patients with a substance use disorder (SUD), admitted for detoxification, often suffer from a poor quality of life (QoL). We set out to monitor QoL, together with substance use, in a departure from the usual norm of measuring substance use alone as a treatment outcome. Literature searches revealed scant knowledge of how QoL is influenced. With this in mind, we aimed to investigate whether total abstinence, prior to follow-up, could influence QoL.Methods: We studied a prospective cohort of 140 patients admitted for inpatient detoxification treatment at Sørlandet Hospital (Norway), from September 2008 to August 2010. QoL was measured by a generic five-item questionnaire, the QoL-5. The extremes of this scale ranged from the worst possible rating of 0.1 to 0.9, as the best. A norm for the general population was benchmarked at 0.69. Change in QoL was calculated by subtracting baseline QoL from that achieved at the 6-month follow-up interview; linear regression modeling was used to study the influence of individual QoL predictors.Results: The mean QoL at baseline was 0.46, 39 % below that of the general reference population. By applying the clinical interpretation of the scale, we found a modest overall mean improvement in QoL at follow-up (0.11 points); the greatest increases were seen for patients with the lowest baseline QoL scores. Abstinence prior to follow-up correlated with improved QoL, while living alone and psychological distress were negative influences.Conclusions: For patients with a SUD, clinicians should emphasize that abstinence may help to improve their QoL. [ABSTRACT FROM AUTHOR]

Purpose: To obtain insight into employment and insurance outcomes of thyroid cancer survivors and to examine the association between not having employment and other factors including quality of life.Methods: In this cross-sectional population-based study, long-term thyroid cancer survivors from the Netherlands participated. Clinical data were collected from the cancer registry. Information on employment, insurance, socio-demographic characteristics, long-term side effects, and quality of life was collected with questionnaires.Results: Of the 223 cancer survivors (response rate 87 %), 71 % were employed. Of the cancer survivors who tried to obtain insurance, 6 % reported problems with obtaining health care insurance, 62 % with life insurance, and 16 % with a mortgage. In a multivariate logistic regression analysis, higher age (OR 1.07, CI 1.02-1.11), higher level of fatigue (OR 1.07, CI 1.01-1.14), and lower educational level (OR 3.22, CI 1.46-7.09) were associated with not having employment. Employment was associated with higher quality of life.Conclusions: Many thyroid cancer survivors face problems when obtaining a life insurance, and older, fatigued, and lower educated thyroid cancer survivors may be at risk for not having employment. [ABSTRACT FROM AUTHOR]

Introduction and hypothesis: Urinary incontinence is a source of health-related poor quality of life. It is, however, rarely disclosed, except when specifically enquired about by the healthcare provider. This study determined the prevalence of urinary incontinence and opportunistic screening for it in women attending a general outpatient clinic. Methods: A total of 1,250 consenting women attending a general outpatient clinic in Ile-Ife, a semi-urban town in Southwest Nigeria, were recruited into this cross-sectional study. Confidential post-consultation interviews were performed in each patient to determine whether they had been asked about urinary incontinence and whether they felt that they ought to have been asked. The Questionnaire for Urinary Incontinence Diagnosis (QUID) was administered to determine the prevalence and pattern of urinary incontinence. Results were expressed as proportions and compared using the Chi-squared test. Results: The subjects' ages ranged from 20 to 100 years (mean = 46.8 ± 17.7 years). Sixty-five women had urinary incontinence (prevalence = 5.2 %). QUID classified 30 (2.4 %), 23 (1.8 %), and 12 (1.0 %) of them as having urge, stress, and mixed incontinence respectively. None of them self-reported incontinence to their physicians. Only 9 incontinent (13.8 %) and 44 continent women (3.7 %) had opportunistic screening ( p < 0.001). Fifty of the incontinent women (76.9 %) felt that their physician ought to have asked them about it. Forty-eight of them (73.8 %) did not consider incontinence a sufficient reason for presentation in hospital, but the majority (90.7 %) desired treatment. Conclusion: Urinary incontinence was occasionally present, but usually undisclosed by women attending the general outpatient clinic, unless when specifically asked by their physicians. Opportunistic screening is therefore recommended in this setting. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study was to evaluate the health-related quality of life (HRQOL) of Chinese primary care patients with lower urinary tract symptoms (LUTS). Methods: Five hundred and nineteen primary care subjects with LUTS completed a structured questionnaire containing the International Prostate Symptom Score, the adapted Incontinence Impact Questionnaire-7, the International Consultation on Incontinence Questionnaire-Urinary Incontinence Short Form, the Chinese (HK) SF-12 Health Survey Version 2 (SF-12 v2) and the Depression, Anxiety and Stress Scale-21. Results: LUTS patients had poorer HRQOL for the General Health and the Vitality domains and lower Physical Component Summary scores, but better HRQOL for the Role Emotion domain than the adjusted Hong Kong population norms. Clinical factors associated with poorer HRQOL measured by the SF-12 v2 included having more severe LUTS and having more severe depressive, anxiety and stress symptoms. Socio-demographic factors associated with poorer SF-12 v2 were consistent with those found in the general populations. Clinical and socio-demographic factors associated with poorer HRQOL assessed by condition-specific measures included having more severe LUTS (excluding intermittency and straining), the presence of mixed urinary incontinence, having more severe anxiety and stress symptoms, younger age, being not married, being in employment and having a lower household income. Conclusions: LUTS had substantial negative impact on patients' overall health perception and global well-being in Chinese population. A decline in HRQOL might be a key determinant for Chinese patients with LUTS to seek treatment. Patients with nocturia, frequency, urgency or mixed urinary incontinence and younger patients deserve more treatment attention because they appear to have poorer HRQOL. [ABSTRACT FROM AUTHOR]

Purpose: To estimate variations in Overall Quality Of Life (OQOL) within 12 months following alcohol detoxification and to evaluate the predictive value of OQOL for relapse and alcohol use severity. Methods: Alcohol use disorders and four OQOL domains (physical health, psychological health, social relationships and environment) were assessed in 199 patients entering in-patient alcohol detoxification. Follow-up assessments were performed at 6 and 12 months after discharge. Cross-sectional and longitudinal analyses explored the relationship between OQOL and alcohol use severity, examining differences between abstinent and relapsed patients. The predictive value of OQOL was analyzed by logistic and linear regression. Results: Correlation between OQOL and Alcohol Use Disorders Identification Test scores was confirmed at all stages of observation. Abstinent patients showed a significant improvement in all OQOL domains at 6 months after discharge, whereas OQOL domains did not undergo any significant change in relapsed patients. Baseline OQOL did not prove to be predictive of either relapse or alcohol use severity. Conclusions: Overall quality of life changed in parallel with alcohol use severity throughout the duration of the study, confirming it to be a useful and sensitive measure of secondary outcome for alcohol detoxification. Conversely, none of the OQOL baseline scores functioned as predictors of relapse within 12 months following discharge or alcohol use severity in relapsed patients. [ABSTRACT FROM AUTHOR]

Introduction: The study's aim was to establish, for children living in urban disadvantage, the nature and extent of the relationship between body mass index (BMI) and health-related quality of life (HRQoL), including the role of individual and family factors in influencing this relationship. Methods: Within the context of a longitudinal design, 255 children aged 7-12 years (50 % male) self-reported their HRQoL (Kidscreen-27) and had their height and weight measured at year one and two. One parent/guardian for each child was also assessed at year one with the OSLO Social Support Scale and Hospital Anxiety and Depression Scale. Regression analysis was also conducted. Results: BMI was weakly inversely associated with 'total HRQoL' ( r = −.15, p < .05), 'physical well-being' and 'autonomy and parent relations'. Significant differences were found between normal weight and obese children on all but the latter dimension. Neither weight group, however, fell below the average European HRQoL range. BMI predicted physical well-being a year later and vice versa, whilst autonomy and parent relations also predicted BMI a year later. In terms of 'overweight' children (38 %), those approaching adolescence had poorer physical and school well-being than younger children, and those whose parents had moderate-to-severe levels of depression fared worse on school well-being than children whose parents were not depressed. Conclusion: The findings suggest that obesity programmes could aim to prevent/reduce obesity and optimise HRQoL in urban disadvantaged preadolescent children whilst also targeting parental mental health difficulties. Future research should examine mediators of the effect of BMI on HRQoL. [ABSTRACT FROM AUTHOR]

Purpose: To investigate the ability of the EQ-5D to discriminate between levels of alcohol risk in a large sample of hazardous and harmful drinkers, and to explore the relationship between transitions between alcohol risk levels and changes in EQ-5D up to 12 months. Methods: This is a web-based randomised controlled trial evaluating a novel intervention for hazardous and harmful alcohol consumption. EQ-5D scores were compared among groups of drinkers at baseline (low/medium/high risk according to self-reported past week alcohol consumption), and changes in EQ-5D scores were estimated as a function of changes in alcohol consumption level. Results: Baseline EQ-5D scores were dominated by problems with anxiety/depression, which increased with alcohol risk level, whilst high-risk drinkers also experienced more problems with physical HRQoL dimensions. However, the tool demonstrated a considerable ceiling effect. At follow-up, despite considerable reductions in alcohol consumption across the sample, significant changes in aggregated EQ-5D index scores were only observed for high-risk drinkers at baseline who reduced their drinking, with small improvements (0.04-0.06) compared to those who did not reduce. Conclusions: Our results suggest that the three-option EQ-5D may not be an optimal primary end point for measuring clinical and cost-effectiveness in randomised controlled trials of interventions among hazardous and harmful alcohol users, although further testing of the sensitivity of the tool in these populations is needed. [ABSTRACT FROM AUTHOR]

Considerable support for the use of person trade-off methods to assess the quality-adjustment factor in quality-adjusted life years (QALY) models has been expressed in the literature. The WHO has occasionally used similar methods to assess the disability weights for calculation of disability-adjusted life years (DALYs). This paper discusses the theoretical support for the use of person trade-offs in QALY-type measurement of (changes in) population health. It argues that measures of this type based on such quality-adjustment factors almost always violate the Pareto principle, and so lack normative justification. [ABSTRACT FROM AUTHOR]

The objective of this study was to determine the impact of family income and sickle cell disease on the health-related quality of life (HRQL) of children. This was a cross-sectional study of children with and without sickle cell disease. Participants completed the PedsQL™ generic core scales parent-proxy or child self-report questionnaire during a routine clinic visit. HRQL was the primary outcome measured. Family income and sickle cell disease were the primary independent variables of interest. A total of 104 children with sickle cell disease and 74 without disease participated in the study. After adjusting for family income, patient age, and the presence of co-morbidities, children with severe sickle cell disease had increased odds of worse overall HRQL (parent-proxy HRQL report odds ratio [OR] 4.0) and physical HRQL (parent-proxy report OR 5.67, child self-report OR 3.33) compared to children without sickle cell disease. Children with sickle cell disease have significantly impaired HRQL, even after considering the potential detrimental effect of family income on HRQL. Targeted interventions to improve these children’s HRQL are warranted. [ABSTRACT FROM AUTHOR]

In drug treatment outcome literature, a focus on objective and socially desirable indicators of change (e.g. no drug use) has predominated, while outcome indicators that are important for drug users themselves (e.g. quality of life, satisfaction with treatment) have largely been neglected. Nonetheless, Quality of Life (QoL) has become an important concept to evaluate effectiveness of treatment in mental health care research and disability studies. Given the almost exclusive focus on Health-related Quality of Life (HRQOL) in substance abuse research and the neglect of clients’ perspectives in this field, we explore in this study the concept of QoL as perceived by drug users. Focus group discussions ( n = 9) were organised in various treatment settings and community services for drug users in the region of Ghent, Belgium to identify important dimensions of QoL and their interpretation by drug users. Data were clustered and analysed based on the theoretical framework of Robert Schalock (Quality of life. Volume 1: Conceptualization and measurement, 1996). The domains ‘personal relationships’, ‘social inclusion’ and ‘self-determination’ were discussed most frequently by the participants. They stressed the importance of a supportive social network in particular. It can be concluded that QoL is not primarily associated by drug users with health and it involves much more than the aspects typically represented in measures of HRQOL. [ABSTRACT FROM AUTHOR]

Studies of HIV-related symptom and treatment side effect prevalence often fail to distinguish individual causal attributions between the two types of problems. However, an understanding of causal appraisals is critical to clarifying and intervening on coping in the context of HIV symptoms and treatment side effects. The objectives of this study are (1) to present causal attributions of symptoms reported by HIV+ adults taking combination therapy and (2) to describe the differential impact on health-related quality of life. In a cross-sectional interview study, a convenience sample of 109 HIV-positive adults taking highly active antiretroviral therapy (HAART) were interviewed using a combination of self- and interviewer-administered measures of quality of life, physical problem checklists, and side effect and HIV-related symptom attribution assessments. The most prevalent physical problems were fatigue, stiff/painful joints, aching muscles, diarrhea, feelings of depression, and neuropathy. Those most commonly labeled as side effects of HAART included upset stomach, nausea/vomiting, constipation, and changes in taste. Most commonly cited as symptoms related to HIV disease were tender lymph nodes, night sweats, weight loss, fever, and loss of strength. Impact of side effects, symptoms, and both were associated with impaired physical and social functioning. Disease-related symptoms, but not side effects, were related to perceptions of general health. Results suggest that HIV-positive persons taking HAART make distinctions between symptoms of disease and side effects of treatment. Perceived disease-related symptoms and side effects have significant and unique associations with quality of life. Findings have implications for symptom and side effects management, provider relations, and future research. [ABSTRACT FROM AUTHOR]

Health-related quality of life (HRQOL) of youths with sickle cell disease (SCD) has not been described, despite the psychosocial and physical consequences associated with the disease. We compared the HRQOL of 58 children with SCD to a demographically similar sample of 120 healthy children and examined predictors of HRQOL. Child HRQOL was assessed using the Child Health Questionnaire—Parent Report Form. Review of medical charts of children with SCD provided data on disease-related complications. Results demonstrated that caregivers of children with SCD reported that their children had more limited physical, psychological, and social well-being than healthy children. Older child age, female gender, and more disease-related complications predicted limitations in the physical health of children with SCD. The findings indicated that SCD significantly affects the HRQOL of youths. Certain subgroups of patients (e.g., children with more disease complications) may benefit from interventions specifically designed to improve their physical functioning. [ABSTRACT FROM AUTHOR]