Health utility and health-related quality of life of Japanese prostate cancer patients according to progression status measured using EQ-5D-5L and FACT-P Abstract Purpose To obtain health utility data to allow for cost-effectiveness analysis in groups stratified by disease progression along with health-related quality of life (HRQoL) information in Japanese prostate cancer (PC) patients. Methods In this cross-sectional observational study, EuroQol-5 Dimension- 5 Level (EQ-5D-5L), EuroQol Visual Analog Scale (EQ-VAS), and Functional Assessment of Cancer Therapy-Prostate (FACT-P) measures were used to examine utility, VAS scores, and disease-specific HRQoL, respectively. Scores obtained were statistically examined for the correlation among measures and domains. Parameter estimates of statistically significant factors were assessed using generalized linear models (GLM). Results A total of 380 patients stratified by their disease progression status were analyzed. The numbers (%) of patients in groups stratified as having localized (L), localized progression (LP), distant metastatic (DM), and DM-castration-resistant PC (CRPC) were 275 (72.4), 40 (10.5), 27 (7.1), and 38 (10.0), respectively. EQ-5D-5L mean (standard deviation, SD) scores of L, LP, DM, and DM-CRPC in study participants were 0.87 (0.15), 0.86 (0.15), 0.85 (0.18), and 0.84 (0.17), respectively. The mean (SD) scores assessed by EQ-5D-5L, EQ-VAS, and FACT-P instruments were 0.86 (0.16), 74.6 (16.8), and 110.8 (19.6), respectively. Utility scores correlated well with FACT-P scores. Eastern Cooperative Oncology Group performance status had significant influences on all instruments’ scores. Conclusions We obtained health utility and HRQoL scores of Japanese PC patients stratified by disease progression in detail. Our results will be useful for establishing cost-effectiveness analyses in Japanese PC settings.

Health state utilities associated with attributes of migraine preventive treatments based on patient and general population preferences Abstract Purpose While previous studies have estimated health state utilities associated with migraine severity and frequency, migraine treatments vary in other ways that may have an impact on patients’ quality of life, preference, and utility. The purpose of this study was to estimate utilities associated with migraine treatment attributes including route of administration and treatment-related adverse events (AEs). Methods In time trade-off interviews, migraine patients and general population participants in the UK valued health state vignettes drafted based on literature, medication labels, and clinician interviews. All respondents valued migraine health states varying in route of administration. Each participant also valued eight health states (randomly selected from a total of 15) that added the description of an AE to a migraine health state. Results A total of 400 participants completed interviews (200 general population [49.0% female; mean age = 43.6 years]; 200 migraine patients [74.5% female; mean age = 45.8 years]). In the general population sample, mean utilities of health states without aura were 0.79 with daily oral medication, 0.78 with one injection per month, and 0.72 with 31–39 injections once every 3 months. The greatest disutilities (i.e., decreases in utility) were for AEs associated with oral medications (e.g., − 0.060 [fatigue] and − 0.098 [brain fog]). Differences among health states followed the same pattern in the patient sample as in the general population sample. Conclusions Utilities estimated from the general population sample may be used to represent route of administration and AEs in cost-utility models. Results from the patient sample indicate that these treatment characteristics have an impact on patient preference.

Self-management and psychological resilience moderate the relationships between symptoms and health-related quality of life among patients with hypertension in China Abstract Purpose To examine whether and how self-management and psychological resilience could moderate the relationships between symptoms and health-related quality of life (HRQoL) among hypertensive patients in China. Methods This was a cross-sectional study of 220 participants recruited from January to May, 2018. Demographic and clinical information were obtained from medical records and by patient interview. The Chinese version of 17-item Hypertension-specific Symptom Scale, 21-item Self-Management Scale, and 10-item Connor-Davidson Resilience Scale (CD-RISC-10) as well as Short Form 12 Health Survey (SF-12) were used to collect information in this research. The moderation effects of self-management and psychological resilience were explored using the PROCESS macro for SPSS. Results Among all patients, 128 (58.2%) were female, 106 (48.2%) had a bachelor degree or higher, and 133 (60.5%) had moderate to severe Charlson Comorbidity Index. Both self-management and psychological resilience were negatively correlated to symptoms (r = − 0.259, p < 0.001; r = − 0.282, p < 0.001) but positively correlated to physical (r = 0.316, p < 0.001; r = 0.344, p < 0.001) and mental (r = 0.273, p < 0.001; r = 0.309, p < 0.001) HRQoL. After controlling for potential covariates, self-management could moderate the associations between symptoms and physical HRQoL (p = 0.041, ΔR2 = 0.010), while psychological resilience could moderate the relationships between symptoms and mental HRQoL (p = 0.02, ΔR2 = 0.010). Conclusions For hypertension patients, HRQoL is dependent on the severity of symptoms, engagement of self-management behaviors, and psychological resilience, which should be carefully considered when to improve patients’ HRQoL by health care providers.

Health and oral health-related quality of life of children and adolescents with chronic kidney disease: a cross-sectional study Abstract Purpose The aim of this study was to evaluate if health and oral health status of children and adolescents with different stages of CKD are associated with their health-related quality of life (HRQoL), oral health-related quality of life (OHRQoL) and socioeconomic and demographic conditions. Methods One hundred children and adolescents with CKD were age and gender matched to 100 individuals without CKD (mean age ± SD = 13.04 ± 2.57). Oral health was characterised by means of gingival bleeding index (GBI), plaque index (PI), the decayed, missing, and filled teeth (DMFT) index and the developmental enamel defect (DED) index. All children and adolescents answered two Peds QL® instruments (general and oral health scales). Results Comparing the mean scores of HRQoL and OHRQoL between groups, we observed that CKD group demonstrated worse perceptions when compared to non-CKD group. Multiple linear regression analysis with bootstrap estimation of variance (1000 replications) showed association between dental caries experience (p < 0.001), gingival inflammation (p < 0.001) and diagnosis of CKD (p = 0.027) with the OHRQoL and between physical and the emotional domain of HRQoL, when moderate/severe gingival inflammation and hypoplasia were present. Conclusion The implementation of public policies that contemplate the early dental preventive intervention in CKD children and adolescents should occur aiming to improve their oral health, once oral manifestations can directly affect the aspects of the HRQoL and OHRQoL of these individuals.

Cutoff of the Zarit Burden Interview in predicting depression and anxiety Abstract Background The purpose of the present study was to determine a statistically valid cutoff score for the Zarit Burden Interview (ZBI) in order to identify family caregivers at risk for depression and anxiety to guide for further assessment and future intervention. Methods The ZBI, the Patient Health Questionnaire (PHQ), and the Generalized Anxiety Disorder Scale (GAD) were administered to a representative community sample of 327 family caregivers of schizophrenia individuals. A ZBI cutoff score was determined using three different statistical methods: tree-based modeling, K-means clustering technique and linear regression, followed by contingency analysis and receiver operating characteristic (ROC) curve to compare between depression and anxiety scale scores with the ZBI cutoff. Results Findings suggest that a cutoff score of 48 in ZBI has significant predictive validity for identifying caregivers at risk for both depression and anxiety. A ZBI cutoff of 48 showed sensitivity of 73% for PHQ and 70% for GAD, specificity of 80% for PHQ and 79% for GAD, PPV (positive predictive value) of 75% for PHQ and 73% for GAD, NPV (negative predictive value) of 78% for PHQ and 76% for GAD. Conclusions This cutoff score would enable health care providers to assess family caregivers at risk and provide necessary interventions to improve their quality of life in this important role.

Cross-cultural selection and validation of instruments to assess patient-reported outcomes in children and adolescents with achondroplasia Abstract Purpose Achondroplasia, as the most common form of disproportionate short stature, potentially impacts the health-related quality of life (HRQOL) and functioning of people with this condition. Because there are no psychometrically validated patient-reported outcome (PRO) condition-specific instruments for achondroplasia, this study selected and tested available generic, disease-specific and under development questionnaires for possible use in multinational clinical research. Methods A three-step approach was applied. First, a literature review and clinician/expert opinions were used to select relevant PRO questionnaires. Second, focus group discussions, including a group cognitive debriefing for piloting of the questionnaires with children/adolescents with achondroplasia and their parents, were performed in Spain and Germany. Third, a field-test study was conducted to test the psychometric properties of these instruments. Results Six questionnaires were identified as potentially relevant in children with achondroplasia. In each country, five focus groups including a cognitive debriefing were conducted, and the results narrowed the possibilities to three instruments as most appropriate to assess HRQOL (the generic PedsQL, the height-specific QoLISSY, and the achondroplasia-specific APLES). Results of the field study indicate the QoLISSY and the PedsQL questionnaires to be most appropriate for use in clinical research at this time. Conclusion This selection study is a step forward in assessing the impact of achondroplasia on HRQOL. Of the instruments examined, the QoLISSY and the PedsQL both capture items relevant to children with achondroplasia and have met the psychometric validation criteria needed for use in research. The APLES instrument is a promising tool that should be revisited upon psychometric validation.

Use of an expert panel to identify domains and indicators of delirium severity Abstract Purpose Our purpose was to create a content domain framework for delirium severity to inform item development for a new instrument to measure delirium severity. Methods We used an established, multi-stage instrument development process during which expert panelists discussed best approaches to measure delirium severity and identified related content domains. We conducted this work as part of the Better ASsessment of ILlness (BASIL) study, a prospective, observational study aimed at developing and testing measures of delirium severity. Our interdisciplinary expert panel consisted of twelve national delirium experts and four expert members of the core research group. Over a one-month period, experts participated in two rounds of review. Results Experts recommended that the construct of delirium severity should reflect both the phenomena and the impact of delirium to create an accurate, patient-centered instrument useful to interdisciplinary clinicians and family caregivers. Final content domains were Cognitive, Level of consciousness, Inattention, Psychiatric-Behavioral, Emotional dysregulation, Psychomotor features, and Functional. Themes debated by experts included reconciling clinical geriatrics and psychiatric content, mapping symptoms to one specific domain, and accurate capture of unclear clinical presentations. Conclusions We believe this work represents the first application of instrument development science to delirium. The identified content domains are inclusive of various, wide-ranging domains of delirium severity and are reflective of a consistent framework that relates delirium severity to potential clinical outcomes. Our content domain framework provides a foundation for development of delirium severity instruments that can help improve care and quality of life for patients with delirium.

Association of the built environments and health-related quality of life in community-dwelling older adults: a cross-sectional study Abstract Purpose The relationship between built environments and the quality of life (QoL) of the elderly has gained great attention in recent years. However, most QoL studies have been conducted in western countries; thus, limited research was found in Asia, in which the population density, urban forms, narrow roadways, and land use patterns are more compact and highly mixed in terms of use. Therefore, the purpose of this study was an interdisciplinary analysis of two national datasets, the National Land Use Investigation and the National Health Interview Survey, to explore the relationship between built environments and the health-related quality of life of older adults in Taiwan. Methods Eight types of built environments at the township level were calculated, and 1222 nationally representative older adults aged 65 and older were recruited. The outcome variable was health-related QoL as measured using the EQ-5D, including utility score and the EQ-VAS. Statistical methods included descriptive analysis, bivariate analysis, and mixed-effects logistic regression analysis, which were conducted using SAS 9.4 software. Results The results showed that a significant relationship exists between cultural and historical facilities and low EQ-VAS; none of the built environments were found to be related to the EQ-5D. Individual factors are the main determinants of the EQ-5D of older adults in Taiwan. Positive relationships were found if older adults were engaging in physical activities and social participation. Conclusions We suggest that building a supportive environment in which elderly people could consistently engage in physical activities and social participation is another potential approach that might contribute to active aging.

Quality of life assessment scales in polio survivors: a scoping review Abstract Background Quality of life evaluation is essential to explore the effect of paralytic polio on the daily life experience of the polio survivor. Researchers have employed a range of assessment instruments to evaluate quality of life among polio survivors. Hence, to select the appropriate scale, it is crucial to compare the contents and psychometric properties of these instruments. Purpose This scoping review explores quality of life instruments that are used in polio literature and analyzes their contents and psychometric properties using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) criteria. Method Using the Arksey and O’Malley framework, we conducted a literature search in the following electronic databases Medline, CINAHL, Web of Science, Embase, and Google Scholar to identify relevant studies that focused on quality of life of polio survivors. Of the 88 articles that qualify for full-text screening, 34 studies met our inclusion criteria. Two independent reviewers extracted data from the selected studies via Covidence, a reference manager that allows for blinding of reviews. Results Most of the instruments included in this review are generic, self-reported, and multidimensional. Despite having mostly adequate psychometric properties, these properties were not evaluated in polio survivors. Conclusion The information provided in this review could be used to guide instrument selection and identify the need to develop a new tool or to adapt a pre-existing scale for measuring quality of life among polio survivors.

Mapping the Strengths and Difficulties Questionnaire onto the Child Health Utility 9D in a large study of children Abstract Purpose Non-preference-based measures cannot be used to directly obtain utilities but can be converted to preference-based measures through mapping. The only mapping algorithm for estimating Child Health Utility-9D (CHU9D) utilities from Strengths and Difficulties Questionnaire (SDQ) responses has limitations. This study aimed to develop a more accurate algorithm. Methods We used a large sample of children (n = 6898), with negligible missing data, from the Longitudinal Study of Australian Children. Exploratory factor analysis (EFA) and Spearman’s rank correlation coefficients were used to assess conceptual overlap between SDQ and CHU9D. Direct mapping (involving seven regression methods) and response mapping (involving one regression method) approaches were considered. The final model was selected by ranking the performance of each method by averaging the following across tenfold cross-validation iterations: mean absolute error (MAE), mean squared error (MSE), and MAE and MSE for two subsamples where predicted utility values were < 0.50 (poor health) or > 0.90 (healthy). External validation was conducted using data from the Child and Adolescent Mental Health Services study. Results SDQ and CHU9D were moderately correlated (ρ = − 0.52, p < 0.001). EFA demonstrated that all CHU9D domains were associated with four SDQ subscales. The best-performing model was the Generalized Linear Model with SDQ items and gender as predictors (full sample MAE: 0.1149; MSE: 0.0227). The new algorithm performed well in the external validation. Conclusions The proposed mapping algorithm can produce robust estimates of CHU9D utilities from SDQ data for economic evaluations. Further research is warranted to assess the applicability of the algorithm among children with severe health problems.