JournalTOCs

Quality of Life Research
Journal Prestige (SJR): 1.216

Citation Impact (citeScore): 3
Number of Followers: 20

Hybrid journal (It can contain Open Access articles)
ISSN (Print) 1573-2649 - ISSN (Online) 0962-9343
Published by Springer-Verlag

[2469 journals]

Correction to: Neurocognitive functioning and health‑related quality of
life of children after pediatric intensive care admission: a systematic
review
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  PubDate: 2022-09-01
Establishing content validity of LIMB-Q Kids: a new patient-reported
outcome measure for lower limb deformities
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  Abstract: Purpose To establish the content validity of LIMB-Q Kids, a new patient-reported outcome measure (PROM) for children with lower limb deformities. This study focused on three key components of content validity, i.e., comprehension, comprehensiveness, and relevance. Methods Cognitive debriefing interviews (CDIs) with children with lower limb deformities were performed, and expert input from parents and clinicians directly involved in the care of children with lower limb deformities was obtained. CDIs were conducted with children from sites in Australia, Canada, and the USA. All interviews were recorded and transcribed verbatim. Analyses were conducted using the reparative approach, which involved close examination of the transcribed interviews and summarising edits after each interview. Results Forty patients, experts, and parents reviewed LIMB-Q Kids and provided feedback. At the start, LIMB-Q Kids had 10 scales and 124 total items. Five rounds of input was obtained from children, parents, and experts. Overall, 37 new items were added. Thirty-three of the new items were included to measure symptoms experienced in different parts of the legs. Final version of LIMB-Q Kids had 11 scales and 159 items. Conclusion This study established content validity of the LIMB-Q Kids, a new PROM for children with lower limb deformities. An international field-test study is underway. Translation and cultural adaptation are underway for sites where English is not the first language. Scoring algorithms will be developed, following which the scale could be used to inform clinical practice and research.
  PubDate: 2022-09-01
A comparison of health-related quality of life and personal, social, and
environmental factors of older adults according to a residential area: a
propensity score matching analysis
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  Abstract: Purpose This study identified individual, social, and environmental factors affecting the health-related quality of life (HRQoL) of older individuals living in urban and non-urban areas of the Republic of Korea and investigated their effects on HRQoL. Methods A secondary data analysis study was conducted using raw data from Korea’s 2017 Community Health Survey. Propensity score matching (PSM) was performed to compare the individual, social, and environmental characteristics of older individuals living in urban and non-urban areas (16,695 and 29,106 individuals, respectively). Statistical analyses were performed using R program 4.0.5. The differences between variables were analyzed using chi-squared and t-tests, whereas factors influencing HRQoL were analyzed using multiple regression analysis. Results Among the individual factors, the living arrangement (p = 0.001, confidence interval [CI] = 0.00–0.02) was an influencing factor in urban areas, whereas it showed no statistical significance in non-urban areas. Moreover, Helping their neighbors (p = 0.001, CI = 0.00–0.01) among the social factors and satisfaction with the living environment (p = 0.011, CI = 0.00–0.02) and with healthcare services (p = 0.047, CI = 0.00–0.01) among the environmental factors were influencing factors in urban areas, whereas they showed no statistical significance in non-urban areas. Conclusion Satisfaction with the living environment and with healthcare services was positively associated with HRQoL among older individuals living in urban areas. Therefore, factors associated with regional health inequality should be identified, and health equality sought through the development of local government policies that consider diversity in population composition and health indicators by region.
  PubDate: 2022-09-01
Health-related quality of life of breast and colorectal cancer patients
undergoing active chemotherapy treatment: Patient-reported outcomes
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  Abstract: Purpose We sought to explore the Health-Related Quality of Life (HRQoL) of Breast Cancer (BC) and Colorectal Cancer (CRC) patients receiving active chemotherapy. Methods A cross-sectional study was conducted among a convenient sample of BC and CRC patients between May 2018 and June 2019. HRQoL was measured with the Functional Assessment of Cancer Therapy-Breast (FACT-B; 36 items, score range 0–144)) and the Functional Assessment of Cancer Therapy-Colon (FACT-C; 34 items, score range 0–136) scales. Both scales measured Physical Well-Being (PWB), Social Well-Being (SWB), emotional well-being, Functional Well-Being (FWB), and an additional disease-specific HRQoL items. Results A total of 209 BC and 159 CRC patients were included, with a mean age 49.73 ± 10.41 and 55.38 ± 11.35 years, respectively. 110 (52.6%) of BC and 86 (54.1%) CRC patients were dependent on caregivers, and 115 (55%) of BC and 92 (57.9%) CRC patients slept > 7 h/night. Reported HRQoL mean scores of BC (FACT-B) and CRC (FACT-C) were 85.53 ± 14.81 and 87.69 ± 20.21, respectively. For BC, the PWB score of patients aged >49 years (postmenopausal) was statistically significantly (p = 0.013) worse than those aged ≤49 years (premenopausal). Patients dependent on caregivers had statistically significant better PWB and worse EWB (p = 0.041; p = 0.027, respectively). CRC patients’ dependent on caregivers had better statistically significant differences scoring in FACT-C (p = <0.001), PWB (p = 0.001), EWB (p = <0.001), and FWB (p = 0.001). Conclusion In this study, BC and CRC patients who received active chemotherapy were more likely to have poor HRQoL. BC and CRC HRQoL should be addressed early and continuously, to limit their effects on treatment plan.
  PubDate: 2022-09-01
Neurocognitive functioning and health-related quality of life of children
after pediatric intensive care admission: a systematic review
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  Abstract: Objective This study systematically reviewed recent findings on neurocognitive functioning and health-related quality of life (HRQoL) of children after pediatric intensive care unit admission (PICU). Data sources Electronic databases searched included Embase, Medline Ovid, Web of Science, Cochrane CENTRAL, and Google Scholar. The search was limited to studies published in the last five years (2015–2019). Study selection Original studies assessing neurocognitive functioning or HRQoL in children who were previously admitted to the PICU were included in this systematic review. Data extraction Of the 3649 identified studies, 299 met the inclusion criteria based on title abstract screening. After full-text screening, 75 articles were included in the qualitative data reviewing: 38 on neurocognitive functioning, 33 on HRQoL, and 4 on both outcomes. Data synthesis Studies examining neurocognitive functioning found overall worse scores for general intellectual functioning, attention, processing speed, memory, and executive functioning. Studies investigating HRQoL found overall worse scores for both physical and psychosocial HRQoL. On the short term (≤ 12 months), most studies reported HRQoL impairments, whereas in some long-term studies HRQoL normalized. The effectiveness of the few intervention studies during and after PICU admission on long-term outcomes varied. Conclusions PICU survivors have lower scores for neurocognitive functioning and HRQoL than children from the general population. A structured follow-up program after a PICU admission is needed to identify those children and parents who are at risk. However, more research is needed into testing interventions in randomized controlled trials aiming on preventing or improving impairments in critically ill children during and after PICU admission.
  PubDate: 2022-09-01
Patient-reported outcome measures of musculoskeletal symptoms and
psychosocial factors in musicians: a systematic review of psychometric
properties
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  Abstract: Purpose To systematically review patient-reported outcome measures (PROMs) of musicians' musculoskeletal symptoms (MSS) and psychosocial factors and their psychometric properties. Methods Six databases were searched. Studies evaluating at least one psychometric property of a PROM developed for or adapted to adult musicians and measuring MSS or occupational psychosocial factors were included. Study quality was evaluated using mainly the COSMIN checklist. Results Twenty-eight studies were included, yielding 27 PROMs. Most COSMIN scores are Doubtful or Inadequate. Validity and internal consistency are the most evaluated psychometric properties. Test–retest reliability was evaluated in five studies (all inadequate sample sizes), measurement error in one, and responsiveness in none. The English, German and Polish Musculoskeletal Pain Intensity and Interference Questionnaire for professional orchestra Musicians (MPIIQM), the 40-item English and Peruvian Spanish Kenny Music Performance Anxiety Inventory (KMPAI) and the Psychosocial Risks Questionnaire for Musicians (PRQM, Polish) are the most robust scales for their constructs. Their internal consistency is sufficient (Cronbach's α ≥ 0.70). Test–retest reliability and construct validity are only sufficient for the German MPIIQM (intraclass correlation coefficients ≥ 0.70). However, results are based on one study per PROM; all require further validation before validity, reliability and responsiveness can be confirmed. Conclusion Due to generally poor methodological quality and one study per PROM on average, none can be confirmed valid, reliable and responsive. Yet, preliminary validation recommends prudent use of some PROMs pending further validation. Robust PROM studies are needed to fill the important literature gap regarding musician-specific, validated PROMs.
  PubDate: 2022-09-01
Estimating the EQ-5D-5L value set for the Philippines
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  Abstract: Background The Philippines has recommended the use of Quality-Adjusted Life Years (QALYs) in government health technology assessments (HTA). We aimed to develop a value set for the EQ-5D-5L based on health preferences of the healthy general adult population in the Philippines. Methods Healthy, literate adults were recruited from the Philippine general population with quota targets based on age, sex, administrative region, type of residence, education, income, and ethnolinguistic groups. Each participant’s preference was elicited by completing Composite Time Trade-Off (C-TTO) and Discrete Choice Experiment (DCE) tasks. Tasks were computer-assisted using the EuroQol Valuation Technology 2.0. To estimate the value set, we explored 20- and 8-parameter models that either use c-TTO-only data or both c-TTO and DCE (also called hybrid models). Final model choice was guided by principles of monotonicity, out-of-sample likelihood, model fit, and parsimony. Results We recruited 1000 respondents with demographic characteristics that approximate the general population such as 49.6% Female, 82% Roman Catholic, 40% in urban areas, and 55% finished high school. None of the 20-parameter models demonstrated monotonicity (logical worsening of coefficients with increasing severity). From the 8-parameter models, the homoscedastic TTO-only model exhibited the best fit. From this model, mobility and pain/ discomfort had the highest effect on utilities. Conclusion The selected model for representing the Philippine general population preferences for EQ-5D-5L health states was an 8-parameter homoscedastic TTO-only model. This value set is recommended for use in QALY calculations in support of HTA-informed coverage decisions in the Philippines.
  PubDate: 2022-09-01
A comparison of methods to address item non-response when testing for
differential item functioning in multidimensional patient-reported outcome
measures
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  Abstract: Purpose Item non-response (i.e., missing data) may mask the detection of differential item functioning (DIF) in patient-reported outcome measures or result in biased DIF estimates. Non-response can be challenging to address in ordinal data. We investigated an unsupervised machine-learning method for ordinal item-level imputation and compared it with commonly-used item non-response methods when testing for DIF. Methods Computer simulation and real-world data were used to assess several item non-response methods using the item response theory likelihood ratio test for DIF. The methods included: (a) list-wise deletion (LD), (b) half-mean imputation (HMI), (c) full information maximum likelihood (FIML), and (d) non-negative matrix factorization (NNMF), which adopts a machine-learning approach to impute missing values. Control of Type I error rates were evaluated using a liberal robustness criterion for α = 0.05 (i.e., 0.025–0.075). Statistical power was assessed with and without adoption of an item non-response method; differences > 10% were considered substantial. Results Type I error rates for detecting DIF using LD, FIML and NNMF methods were controlled within the bounds of the robustness criterion for > 95% of simulation conditions, although the NNMF occasionally resulted in inflated rates. The HMI method always resulted in inflated error rates with 50% missing data. Differences in power to detect moderate DIF effects for LD, FIML and NNMF methods were substantial with 50% missing data and otherwise insubstantial. Conclusion The NNMF method demonstrated comparable performance to commonly-used non-response methods. This computationally-efficient method represents a promising approach to address item-level non-response when testing for DIF.
  PubDate: 2022-09-01
Profile of individuals with low back pain and factors defining chronicity
of pain: a population-based study in Ethiopia
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  Abstract: Purpose Low back pain (LBP) is the most prevalent public health problem globally, second only to headaches in the ranking of painful disorders that affect human beings. However, evidence about the profile of LBP patients is lacking in low-income countries for appropriate management approaches. This study examined the profile of individuals with LBP and factors defining chronicity of pain in Ethiopia. Methods A population-based cross-sectional study design was used to collect data from 1812 adults (≥ 18 years) with LBP at present. Data were collected by interviewing the study participants using an instrument developed and validated in the same study population. The instrument includes socio-demographic information, health behaviours/lifestyle habits, beliefs about pain, and pain and general health-related characteristics of the participants. Data analysis was performed using R version 3.5.1. Both unconditional and conditional logistic regression models were fitted and Odds Ratio (OR) with 95% confidence intervals (95% CIs) were computed to identify factors significantly associated with chronicity of pain at p ≤ 0.05 significance level. Results Negative beliefs about pain, a varying degree of pain interference with daily and social activities, complaining of pain in other anatomical sites other than the low back region, general health status rated as not excellent, depressive symptomology, and sleeping problems/insomnia were common within the profile of individuals with LBP. Age, educational level, residential setting, beliefs about pain, and depressive symptomology were found to have a statistically significant association with chronicity of pain. Conclusions This study provides an overview of the profile of individuals with LBP and factors defining chronicity of pain, assisting clinicians to design appropriate management strategies to improve patients' outcomes.
  PubDate: 2022-09-01
Application of validated mapping algorithms between generic PedsQL scores
and utility values to individuals with sickle cell disease
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  Abstract: Purpose There is a paucity of empirically estimated health state utility (HSU) values to estimate health-related quality of life among individuals with sickle cell disease (SCD). This study aims to map the Pediatric Quality of Life Inventory generic core scales (PedsQL GCS) to HSUs for children and adolescents with SCD in the United States, using published algorithms, and to assess the construct validity of these HSUs against SCD-specific PedsQL scores. Methods We used the published mapping algorithms identified in four published articles, in which the PedsQL GCS was mapped to either the EuroQol-5 Dimension 3-Level, Youth Version or the Child Health Utility 9-Dimension to obtain HSUs. We employed the algorithms to calculate HSUs for a sample of children and adolescents from the Sickle Cell Clinical Research and Intervention Program. To assess the construct validity of the mapped HSUs in SCD patients, we computed Spearman’s correlation coefficient comparing the HSUs with the PedsQL SCD total score and separately with each PedsQL SCD dimension-specific score. Results The mean mapped HSU across published algorithms was 0.792 (95% CI: 0.782–0.801). It was significantly higher among children aged 5–12 years than children aged 13–17 years. The Spearman’s correlation coefficient for HSUs versus PedsQL SCD total scores was 0.64 (95% CI: 0.57–0.71). Correlations ranged from 0.40 (95% CI: 0.32–0.48) to 0.60 (95% CI: 0.54–0.66) for HSUs versus PedsQL SCD dimension-specific scores. Conclusions The existing mapping algorithms show acceptable construct validity in children and adolescents with SCD. Additional algorithms are needed for adults and for specific SCD comorbidities.
  PubDate: 2022-09-01
Quality of mobility measures among individuals with acquired brain injury:
an umbrella review
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  Abstract: Background and objective While several mobility measures exist, there is large variability across measures in how mobility is conceptualized, the source of information and the measurement properties making it challenging to select relevant mobility measures for individuals with acquired brain injury (ABI). Therefore, the objective was to conduct a comprehensive synthesis of existing evidence on the measurement properties, the interpretability and the feasibility of mobility measures from various sources of information (patients, clinicians, technology) using an umbrella review of published systematic reviews among individuals with ABI. Methods Ovid MEDLINE, CINHAL, Cochrane Library and EMBASE electronic databases were searched from 2000 to March 2020. Two independent reviewers appraised the methodological quality of the systematic reviews using the Joanna Briggs Institute critical appraisal checklist. Measurement properties and quality of evidence were applied according to COnsensus-based Standards for the Selection of Health Measurement Instrument (COSMIN) guidelines. Mobility measures were categorized using international standards with the international classification of functioning, disability and health (ICF). Results Thirty-five systematic reviews were included covering 147 mobility measures, of which 85% were mapped to the ICF Activity and Participation component. Results showed an acceptable overall "sufficient" rating for reliability, construct validity and responsiveness for 132 (90%), 127 (86%) and 76 (52%) of the measures, respectively; however, among these measures, ≤ 25% of the methods for evaluating these properties were rated as ‘high’ quality of evidence. Also, there was limited information that supports measure feasibility and scoring interpretability. Conclusions Future systematic reviews should report measures’ content validity to support the use of the measure in clinical care and research. More evaluations of the minimal important difference and floor and ceiling effects are needed to help guide clinical interpretation. Registration information International Prospective Register of Systematic Reviews (PROSPERO); ID: CRD42018100068.
  PubDate: 2022-09-01
Polypharmacy and trajectories of health-related quality of life in older
adults: an Australian cohort study
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  Abstract: Background Health-related quality of life (HRQoL) is an important outcome measure when considering medical treatment; however, the impact of polypharmacy on trajectories of HRQoL over time is unknown. This study aimed to investigate the association between polypharmacy status and trajectories of HRQoL in older adults. Methods A longitudinal cohort study of 2181 community-dwelling adults, 65 years and older, who participated in the 2013 to 2017 waves of the Household Income and Labour Dynamics in Australia (HILDA) Survey. Polypharmacy was defined as the regular use of ≥ 5 prescription medications. Polypharmacy status was categorised into no polypharmacy, in 2013 only (baseline only polypharmacy), in 2017 only (incident polypharmacy) or at both time points (persistent polypharmacy). HRQoL was assessed through the SF-36 questionnaire generating two summary scores: physical component summary (PCS) and mental component summary (MCS). Linear mixed-effects models stratified according to polypharmacy status and change in comorbidities were used to assess trajectories of HRQoL. Results Older adults with persistent polypharmacy had lowest scores for HRQoL measures from 2013 to 2017. After adjusting for all covariates, those with incident polypharmacy had the steepest annual decline in both the PCS and MCS: − 0.86 in PCS and − 0.76 in MCS for those with decreasing or stable comorbidities, and − 1.20 in PCS and − 0.75 in MCS for those with increasing comorbidities. Conclusions Polypharmacy was associated with poorer HRQoL, even after adjusting for confounders. Incident polypharmacy was found to be associated with a clinically important decline in HRQoL and this should be considered when prescribing additional medication to older adults.
  PubDate: 2022-09-01
A threshold explanation for the lack of variation in negative composite
time trade-off values
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  Abstract: Background Recent studies concluded that for health states considered worse than dead (WTD), as measured with the time trade-off (cTTO) method, negative mean values were insensitive to health state severity, which represents a validity problem for the cTTO. However, the aforementioned studies analysed negative values in isolation, which causes selection bias as the value distribution is truncated. Aim To investigate the validity of aforementioned studies and of negative values in general. Methods The ‘threshold explanation’ was formulated: beyond a certain severity threshold, preferences change from better than dead (BTD) to WTD. This threshold differs between respondents. Thus, negative values across severity are obtained from different respondents, and responses added for higher severity contribute negative values close to zero, explaining the aforementioned insensitivity. This explanation was tested using data from the Dutch EQ-5D-5L valuation study. Respondents valued 10 health states. Based on respondents’ number of WTD preferences, segments were constructed, containing respondents with similar severity thresholds. Using regression models for each individual respondent, we examined the relation between values and severity and compared respondents between segments. Results Negative values, when analysed in isolation, were insensitive to severity. However, for individual respondents and within most segments, cTTO values and severity were negatively related. For individual respondents, negative slopes were steeper for segments with more WTD preferences, as predicted by the threshold explanation. Discussion Analysing negative values in isolation leads to biased estimates. Analyses of cTTO values for individual respondents refute the insensitivity of negative cTTO values.
  PubDate: 2022-09-01
Understanding factors that affect wellbeing in trans people “later” in
transition: a qualitative study
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  Abstract: Purpose Although cross-sectional studies have demonstrated that trans people present with lower quality of life and wellbeing than the general population, few studies have explored the factors associated with this, particularly in those who have medically transitioned some time ago. This paper aims to fill the gap in the literature on what factors are associated with wellbeing in trans people who initiated medical transition some time ago. Methods This study used semi-structured one-to-one interviews with 23 participants to investigate the factors that impact upon the wellbeing of trans people who had initiated Gender Affirming Medical Treatment five or more years ago. The content of the interviews were analysed with an inductive, grounded theory approach to identify common themes within them. Results The four themes identified include some consistencies with cisgender populations (while being viewed through the lens of trans experience), as well as those more specific to the trans experience. Together these themes were: Interactions with healthcare services; Seeking societal acceptance; Quality of social support; The ‘double-edged sword’ of media and social media. Each of the themes identifies a factor that participants highlighted as impacting, either positively or negatively, on their wellbeing. Conclusions The results highlight the importance of social support, protective legislations, awareness of trans issues in the general public, and the need of improving the knowledge held by non-specialist healthcare providers.
  PubDate: 2022-09-01
Identifying health-related quality of life cut-off scores that indicate
the need for supportive care in young adults with cancer
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  Abstract: Purpose Using patient-reported outcomes in routine cancer care may improve health outcomes. However, a lack of information about which scores are problematic in specific populations can impede use. To facilitate interpretation of the European Organisation for Research and Treatment of Cancer Core Questionnaire (EORTC QLQ-C30), we identified cut-off scores that indicate need for support by comparing each scale to relevant items from the Supportive Care Needs Survey (SCNS-LF59) in a young adult (YA) population. Methods We conducted a cross-sectional survey amongst YAs with cancer ages 25–39 at diagnosis. Participants completed the EORTC QLQ-C30 and SCNS-LF59. Patient, clinician and research experts matched supportive care needs from the SCNS-LF59 to quality of life domains of the EORTC QLQ-C30. We evaluated the EORTC QLQ-C30 domain score’s ability to detect patients with need using receiver operator characteristic (ROC) analysis, calculating the area under the ROC curve and sensitivity and specificity for selected cut-offs. Cut-offs were chosen by maximising Youden’s J statistic and ensuring sensitivity passed 0.70. Sensitivity analyses were conducted to examine the variability of the cut-off scores by treatment status. Results Three hundred and forty-seven YAs took part in the survey. Six experts matched SCNS-LF59 items to ten EORTC QLQ-C30 domains. The AUC ranged from 0.78 to 0.87. Cut-offs selected ranged from 8 (Nausea and Vomiting and Pain) to 97 (Physical Functioning). All had adequate sensitivity (above 0.70) except the Financial Difficulties scale (0.64). Specificity ranged from 0.61 to 0.88. Four of the cut-off scores differed by treatment status. Conclusion Cut-offs with adequate sensitivity were calculated for nine EORTC QLQ-C30 scales for use with YAs with cancer. Cut-offs are key to interpretability and use of the EORTC QLQ-C30 in routine care to identify patients with supportive care need.
  PubDate: 2022-09-01
Item selection, scaling and construct validation of the Patient-Reported
Inventory of Self-Management of Chronic Conditions (PRISM-CC) measurement
tool in adults
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  Abstract: Purpose To select and scale items for the seven domains of the Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) and assess its construct validity. Methods Using an online survey, data on 100 potential items, and other variables for assessing construct validity, were collected from 1055 adults with one or more chronic health conditions. Based on a validated conceptual model, confirmatory factor analysis (CFA) and item response models (IRT) were used to select and scale potential items and assess the internal consistency and structural validity of the PRISM-CC. To further assess construct validity, hypothesis testing of known relationships was conducted using structural equation models. Results Of 100 potential items, 36 (4–8 per domain) were selected, providing excellent fit to our hypothesized correlated factors model and demonstrating internal consistency and structural validity of the PRISM-CC. Hypothesized associations between PRISM-CC domains and other measures and variables were confirmed, providing further evidence of construct validity. Conclusion The PRISM-CC overcomes limitations of assessment tools currently available to measure patient self-management of chronic health conditions. This study provides strong evidence for the internal consistency and construct validity of the PRISM-CC as an instrument to assess patient-reported difficulty in self-managing different aspects of daily life with one or more chronic conditions. Further research is needed to assess its measurement equivalence across patient attributes, ability to measure clinically important change, and utility to inform self-management support.
  PubDate: 2022-09-01
Psychometric validity and reliability of the 10- and 2-item
Connor–Davidson resilience scales among a national sample of Americans
responding to the Covid-19 pandemic: an item response theory analysis
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  Abstract: Purpose Psychometric validity/reliability of 10-item and 2-item abbreviations of the Connor–Davidson Resilience Scale (CD-RISC-10; CD-RISC-2) was investigated via item response theory and classic approaches. Methods We sampled 5023 adult American participants in a June/July 2020 survey on the COVID-19 pandemic’s psychological effects. Our questionnaire incorporated the CD-RISC-10 with other validated measures. CD-RISC-10 items were ranked on item-to-scale correlations, loadings on a one-factor confirmatory factor analysis model, and item slope/threshold parameters plus information curves from a unidimensional graded response model. Concurrent validity of the highest ranked item pair was evaluated vis-à-vis the CD-RISC-10 and CD-RISC−2. Internal consistency, based on average variance extracted (AVE) and multiple reliability coefficients, was also compared. Convergent/divergent validity was tested by correlating anxiety, depression, fear of COVID-19, anxiety sensitivity, coping, and personality measures with both scales and the highest ranked item pair. Binary agreement/classification indexes assessed inter-rater reliability. Results Items 2 and 9 from CD-RISC-10 ranked the highest. Reliability coefficients were > 0.93, > 0.72, and > 0.82 for the CD-RISC-10, CD-RISC-2, vs summation of items 2 and 9. AVEs were 0.66, 0.67, and 0.77. CD-RISC abbreviations and the summation of items 2 and 9 correlated negatively with anxiety (> − 0.43), depression (> − 0.42), and fear of COVID-19 (> − 0.34); positively with emotional stability (> 0.53) and conscientiousness (> 0.40). Compared to the CD-RISC-2, summative scores of items 2 and 9 more efficiently classified/discriminated high resilience on the CD-RISC-10. Conclusion We confirmed construct validity/reliability of copyrighted CD-RISC abbreviations. The CD-RISC-10’s items 2 and 9 were psychometrically more salient than the CD-RISC−2.
  PubDate: 2022-09-01
An evaluation of patient-reported outcomes in sickle cell disease within a
conceptual model
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  Abstract: Purpose To examine the relations between patient-reported outcomes (PROs) within a conceptual model for adults with sickle cell disease (SCD) ages 18 – 45 years enrolled in the multi-site Sickle Cell Disease Implementation Consortium (SCDIC) registry. We hypothesized that patient and SCD-related factors, particularly pain, and barriers to care would independently contribute to functioning as measured using PRO domains. Methods Participants (N = 2054) completed a 48-item survey including socio-demographics and PRO measures, e.g., social functioning, pain impact, emotional distress, and cognitive functioning. Participants reported on lifetime SCD complications, pain episode frequency and severity, and barriers to healthcare. Results Higher pain frequency was associated with higher odds of worse outcomes in all PRO domains, controlling for age, gender and site (OR range 1.02–1.10, 95% CI range [1.004–1.12]). Reported history of treatment for depression was associated with 5 of 7 PRO measures (OR range 1.58–3.28 95% CI range [1.18–4.32]). Fewer individual barriers to care and fewer SCD complications were associated with better outcomes in the emotion domain (OR range 0.46–0.64, 95% CI range [0.34–0.86]). Conclusions Study results highlight the importance of the biopsychosocial model to enhance understanding of the needs of this complex population, and to design multi-dimensional approaches for providing more effective interventions to improve outcomes.
  PubDate: 2022-09-01
The use of composite time trade-off and discrete choice experiment methods
for the valuation of the Short Warwick-Edinburgh Mental Well-being Scale
(SWEMWBS): a think-aloud study
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  Abstract: Purpose To identify patterns and problems in completing composite time trade-off (C-TTO) and discrete choice experiment (DCE) exercises for the valuation of the Short Warwick-Edinburgh Mental Well-being Scale (SWEMWBS) to inform the optimisation of a valuation protocol. Methods Fourteen cognitive interviews were conducted in the UK using concurrent and retrospective think-aloud and probing techniques. Each participant completed 8 C-TTO tasks and 8 DCE tasks within a computer-assisted personal interview setting. Verbal information was transcribed verbatim. Axial coding and thematic analysis were used to organise the qualitative data and identify patterns and problems with the completion of tasks. Results While participants found the tasks generally manageable, five broad themes emerged to explain and optimise the response to the tasks. (1) Format and structure: attention to the design of practice examples, instructions, and layout were needed. (2) Items and levels: underlying relationships were discovered across different combinations of levels of SWEMWBS items. (3) Decision heuristics: participants engaged in diverse strategies to assist trade-off decisions. (4) Valuation feasibility: certain states were difficult to imagine, compare and quantify. (5) Valuation outcome: the data quality was affected by participants’ discriminatory ability across states and their time trade-off decisions. Conclusion The interviews contributed insights regarding the robustness of the proposed methods. The application of C-TTO and DCE valuation techniques was practical and suitable for capturing individual attitudes towards different mental well-being scenarios. A modified protocol informed by the results is being tested in a larger sample across the UK.
  PubDate: 2022-09-01
Examining subjective well-being among older adults using pain medications
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  Abstract: Purpose To examine the relationship between social participation and subjective well-being (SWB) among older adults using pain medications and evaluate the impact of sex on this relationship. Methods A cross-sectional analysis was conducted using the 2019 National Health and Aging Trends Study data, a nationally-representative sample of Medicare beneficiaries 65 years and older. Individuals were included if they reported taking pain medications for five days or more per week over the last month. Social participation was operationalized using the sum score of four items: visiting family and friends, going out for enjoyment, attending religious services, and participation in other organized activities. SWB was operationalized as a latent variable using four items reflecting positive and negative emotions, and three items reflecting self-evaluation. Structural equation modeling was used to test the relationship between key study constructs, as well as the moderating effect of sex on the relationship between social participation and SWB. Results A total of 964 (weighted N = 7,660,599) participants were included in the study. Most participants were female (61.3%), White (81.0%), community-dwelling (94.9%) older adults. Confirmatory factor analysis showed appropriate fit for SWB. Social participation had a statistically significant association with SWB (unstandardized regression coefficient = 0.133; 95% CI 0.071, 0.196; p < 0.001) after adjusting for covariates. However, this relationship was not moderated by sex (p = 0.836). Conclusion Social participation is positively and significantly associated with SWB among older adults using pain medications. Interventions aimed at improving SWB should consider incorporating a social activities component.
  PubDate: 2022-09-01