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Purpose: To assess the equivalence of patient-reported outcome (PRO) survey responses across Web, interactive voice response system (IVRS), and paper modes of administration.Methods: Postoperative colorectal cancer patients with home Web/e-mail and phone were randomly assigned to one of the eight study groups: Groups 1-6 completed the survey via Web, IVRS, and paper, in one of the six possible orders; Groups 7-8 completed the survey twice, either by Web or by IVRS. The 20-item survey, including the MSKCC Bowel Function Instrument (BFI), the LASA Quality of Life (QOL) scale, and the Subjective Significance Questionnaire (SSQ) adapted to bowel function, was completed from home on consecutive days. Mode equivalence was assessed by comparison of mean scores across modes and intraclass correlation coefficients (ICCs) and was compared to the test-retest reliability of Web and IVRS.Results: Of 170 patients, 157 completed at least one survey and were included in analysis. Patients had mean age 56 (SD = 11), 53% were male, 81% white, 53% colon, and 47% rectal cancer; 78% completed all assigned surveys. Mean scores for BFI total score, BFI subscale scores, LASA QOL, and adapted SSQ varied by mode by less than one-third of a score point. ICCs across mode were: BFI total score (Web-paper = 0.96, Web-IVRS = 0.97, paper-IVRS = 0.97); BFI subscales (range = 0.88-0.98); LASA QOL (Web-paper = 0.98, Web-IVRS = 0.78, paper-IVRS = 0.80); and SSQ (Web-paper = 0.92, Web-IVRS = 0.86, paper-IVRS = 0.79).Conclusions: Mode equivalence was demonstrated for the BFI total score, BFI subscales, LASA QOL, and adapted SSQ, supporting the use of multiple modes of PRO data capture in clinical trials. [ABSTRACT FROM AUTHOR]

Purpose: To validate electronic versions of the Mini Pediatric and Pediatric Asthma Caregiver's Quality of Life Questionnaires (MiniPAQLQ and PACQLQ, respectively), determine completion times and correlate QOL of children and caregivers.Methods: A total of 63 children and 64 caregivers completed the paper and electronic MiniPAQLQ or PACQLQ. Agreement between versions of each questionnaire was summarized by intraclass correlation coefficients (ICC). The correlation between MiniPAQLQ and PACQLQ scores from child-caregiver pairs was assessed using Pearson's correlation coefficient.Results: There was no significant difference (mean difference = 0.1, 95% CI -0.1, 0.2) in MiniPAQLQ Overall Scores between paper (5.9 ± 1.0, mean ± SD) and electronic (5.8 ± 1.0) versions, or any of the domains. ICCs ranged from 0.89 (Overall) to 0.86 (Emotional Function). Overall PACQLQ scores for both versions were comparable (5.9 ± 0.9 and 5.8 ± 1.0; mean difference = 0.0; 95% CI -0.1, 0.2). ICCs ranged from 0.81 (Activity Limitation) to 0.88 (Emotional Function). The electronic PACQLQ took 26 s longer (95% CI 11, 41; p < 0.001). Few participants (3-11%) preferred the paper format. MiniPAQLQ and PACQLQ scores were significantly correlated (all p < 0.05) for Overall (r paper = 0.33, r electronic = 0.27) and Emotional Function domains (r paper = 0.34, r electronic = 0.29).Conclusions: These electronic QOL questionnaires are valid, and asthma-related QOL of children and caregivers is related. [ABSTRACT FROM AUTHOR]

Objective: To assess the validity of the e-OAKHQOL questionnaire and analyze whether the answers were affected by the form of administration (electronic vs. paper).Methods: Two samples of patients with knee osteoarthritis were constituted. The first was recruited by general practitioners. Patients could choose to respond to the electronic or paper version. The second included subjects who responded to the paper version and were matched with respondents to the electronic version in the first sample. The OAKHQOL questionnaire measures health-related quality of life in five dimensions (43 items): physical activity, mental health, pain, social functioning, and social support. Validity was assessed by the classical test theory (CTT) and a Rasch measurement model (partial credit model).Results: The electronic form was preferred by 471 (89.7%) patients: 345 were matched to respondents of the paper version. The percentage of missing responses was lower with the electronic than paper form (1.6 vs. 2.0%, p = .01). Rasch analysis revealed four items with underfitting. Internal consistency was excellent for physical activity (PSI = 0.96) and mental health (PSI = 0.93) but was slightly < 0.85 for the other dimensions. The top-down purification highlighted the significance of DIF by gender in the pain dimension and by form of questionnaire in the mental health dimension.Conclusion: CTT and Rasch analysis demonstrated acceptable measurement properties for the five dimensions of the e-OAKHQOL, so it may be a valuable alternative to the paper form for measuring HRQoL. [ABSTRACT FROM AUTHOR]

Introduction: The COVID-19 pandemic forced people to give up their daily routines and adjust to new circumstances. This might have affected health-related quality of life (HRQOL). We aimed to compare HRQOL during the first COVID-19 wave in 2020 to HRQOL before the pandemic and to identify determinants of HRQOL during the pandemic in Switzerland. Methods: We conducted a cross-sectional online survey during the pandemic (between May and July 2020; CoWELL sample; convenience sample). Before the pandemic (2015–2016), we had conducted a cross-sectional paper-based survey among a representative random sample of the Swiss general population (SGP sample). In both samples, we assessed physical and mental HRQOL (Short Form-36) and socio-demographic characteristics. In the CoWELL sample, we additionally assessed health- and COVID-19-related characteristics. Data were analysed using linear regressions. Results: The CoWELL sample included 1581 participants (76% women; mean age = 43 years, SD = 14 years) and the SGP sample 1209 participants (58% women, mean age = 49 years, SD = 15 years). Adjusted for sex, age, and education, the CoWELL sample reported higher physical HRQOL (PCS, +5.8 (95% CI: 5.1, 6.6), p < 0.001) and lower mental HRQOL (MCS, −6.9 (−7.8, −6.0), p < 0.001) than the SGP sample. In the CoWELL sample, especially persons with lower health literacy, who had no support network or who have had COVID-19, reported lower HRQOL. Discussion: Aspects unique to the COVID-19 pandemic affected HRQOL. Vulnerable persons such as those having had COVID-19, less support opportunities, and with lower health literacy are especially prone to impaired HRQOL during the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

Purpose: In a randomised controlled trial, patients were offered financial incentives to improve their adherence to anti-psychotic maintenance medication. Compared to a control group without the incentives, they had an improved adherence and also better subjective quality of life (SQOL) after 1 year. This paper explores the question as to whether this improvement in SQOL was associated with the amount of money received or with the improved adherence itself.Method: A secondary analysis was performed using data of the experimental group in the trial. Adherence was assessed as the percentage of all prescribed long-acting anti-psychotic injections that were taken by the patient. In regression models, we tested whether changes in medication adherence and/or the amount of incentives received over the 12-month period was associated with SQOL, as rated on the DIALOG scale.Results: Adherence changed from 68.49 % at baseline to 88.23 % (mean difference in adherence = 19.59 %, SD = 17.52 %). The total amount of incentives received within the 1-year study period varied between £75 and £735, depending on the treatment cycle and the number of long-acting injections taken. Improvement in adherence was found to be a significant predictor of better subjective quality of life (β = 0.014, 95 % CI 0.003-0.025, p = 0.014), whilst the amount of incentives received was not (β = 0.0002, 95 % CI -0.002 to 0.002, p = 0.818).Conclusion: Improved medication adherence is associated with a more favourable SQOL. This underlines the clinical relevance of improved adherence in response to financial incentives in this patient group. [ABSTRACT FROM AUTHOR]

Purpose: Adolescence is characterized by the ongoing maturation of emotion-regulation skills and increased emotional reactivity. There is a need for a measurement tool suitable to the Ecological Momentary Assessment methodology, to better capture within-day variations in well-being, and provide fine-grained data that can help understand how environments, behaviors, and health intersect. This paper presents the development and evaluation of the Ecological MOmentary Well-Being Instrument for adolescents, designed for use in EMA. Methods: A mixed-methods study was conducted, using both qualitative and quantitative approaches, to develop and assess the EMOWI. A literature review, pictorial production by graphic designers, and qualitative interviews with French and Canadian professionals and adolescents helped design and evaluate the scale face validity. Quantitative evaluation of dimensionality, reliability, and validity was conducted in two samples of French 8th graders. Results: The resulting 8-item EMOWI showed excellent face validity. Confirmatory factor analysis supported a single factor hypothesis (RMSEA = 0.072). Internal consistency (Cronbach's alpha = 0.85) and intraday test–retest reliability (ICC = 0.83) were high. Correlations with existing scales were consistent with preset hypotheses. Ceiling effects were evidenced for all items, yet not on the global score. Quantitative estimations were similar for the verbal and pictorial versions, but qualitative findings argued in favor of the pictorial version. Conclusion: The 8-item pictorial EMOWI is a short and innovative instrument to measure momentary well-being in adolescents aged 12 to 17 years. Its strong psychometric properties and its acceptability among adolescents make it an excellent candidate instrument for the Ecological Momentary Assessment of well-being in this population. [ABSTRACT FROM AUTHOR]

Purpose: The Personal Wellbeing Index (PWI) is used internationally to measure subjective well-being. While numerous studies have reported on the psychometric properties of the PWI using classic test theory, the current paper provides additional psychometric evaluation using the Rasch measurement model.Method: The responses to the PWI items of 593 healthy adults living in Australia or Canada were analysed using Rasch analysis. Assessed were overall model fit was assessed, individual person fit and item fit, reliability, differential item functioning (DIF), unidimensionality, targeting, and response format.Results: Results indicate excellent psychometric properties of the PWI, provided the religion/spirituality item is excluded. The seven-item PWI showed good model fit (overall item-trait interaction χ (2) = 70.59, df = 63, p = 0.24), excellent person separation (PSI = .89), no item or person misfit, and no DIF for country or gender, and unidimensionality was supported. In addition, only very mild disordered thresholds were observed for the 'safety' item, indicating that overall, the 11-point response format was suitable for this population.Conclusion: It is recommended that the religion/spirituality item not be included in the aggregated or averaged total score in Western context and that caution should be used in comparison across different groups where the eight-item version has been used. [ABSTRACT FROM AUTHOR]

To review published studies regarding the use, feasibility and psychometric performance of the schedule for the evaluation of individual quality of life—direct weighting (SEIQoL-DW) in clinical research. Systematic literature review. Studies using the SEIQoL-DW were included if they were published in English and employed a quantitative design. A pre-defined checklist was used to analyse the reported results. Thirty-nine relevant articles were identified. The SEIQoL-DW has been included in studies relating to a variety of populations, including those who are severely ill. The results of convergent and discriminant validity support our hypotheses in which SEIQoL-DW was expected to correlate moderately to high with measures of global QoL, life satisfaction and mental health and weakly with measures of functional status and health. The SEIQoL-DW appears to be a feasible and valid instrument. The lack of association between the Index score and health, functional status, demographic and clinical parameters may be explained by the instrument’s focus on global QoL and by that of the idiographic measurement approach reflecting the capacity of a patient to value domains other than health in life, despite having health problems. Nevertheless, continued psychometric evaluation in large populations with a longitudinal design is recommended. [ABSTRACT FROM AUTHOR]

Purpose: Cost-effectiveness analyses (CEAs) of screening can be highly sensitive to the health-related quality of life (HRQoL) effects of screen tests and subsequent treatment. Accordingly, accurate assessment of HRQoL is essential. We reviewed the literature regarding HRQoL in cervical prevention and management in order to appraise the current evidence regarding this important input to CEA.Methods: We searched the MEDLINE, Scopus and EconLit databases for studies that estimated HRQoL in cervical cancer prevention and management published January 1995-December 2015. The primary inclusion criterion was for studies that assess HRQoL using the EQ-5D. Data were abstracted from eligible studies on setting, elicitation group, sample size, elicitation instruments, health state valuations, study design and follow-up. We assessed the quality and comparability of the studies with a particular focus on the HRQoL reported across states and groups.Results: Fifteen papers met the inclusion criteria. Most used patient elicitation groups (n = 11), 2 used the general public and 2 used a mix of both. Eight studies were cross-sectional and seven were longitudinal. Six studies used both the EQ-5D-3L and the EQ-VAS together with other measures of overall HRQoL or condition-specific instruments. Extensive heterogeneity was observed across study characteristics.Conclusions: Our results reveal the challenges of sourcing reliable estimates of HRQoL for use in CEAs of cervical cancer prevention and treatment. The EQ-5D appears insufficiently sensitive for some health states. A more general problem is the paucity of HRQoL estimates for many health states and their change over time. [ABSTRACT FROM AUTHOR]

Purpose: ReQoL-10 and ReQoL-20 have been developed for use as outcome measures with individuals aged 16 and over, experiencing mental health difficulties. This paper reports modelling results from the item response theory (IRT) analyses that were used for item reduction. Methods: From several stages of preparatory work including focus groups and a previous psychometric survey, a pool of items was developed. After confirming that the ReQoL item pool was sufficiently unidimensional for scoring, IRT model parameters were estimated using Samejima's Graded Response Model (GRM). All 39 mental health items were evaluated with respect to item fit and differential item function regarding age, gender, ethnicity, and diagnosis. Scales were evaluated regarding overall measurement precision and known-groups validity (by care setting type and self-rating of overall mental health). Results: The study recruited 4266 participants with a wide range of mental health diagnoses from multiple settings. The IRT parameters demonstrated excellent coverage of the latent construct with the centres of item information functions ranging from − 0.98 to 0.21 and with discrimination slope parameters from 1.4 to 3.6. We identified only two poorly fitting items and no evidence of differential item functioning of concern. Scales showed excellent measurement precision and known-groups validity. Conclusion: The results from the IRT analyses confirm the robust structure properties and internal construct validity of the ReQoL instruments. The strong psychometric evidence generated guided item selection for the final versions of the ReQoL measures. [ABSTRACT FROM AUTHOR]

Purpose: The WHOQOL tools are widely used, multi-faceted, patient-rated, quality of life (QoL) measures, developed by the World Health Organization. The WHOQOL questionnaires are used to assess generic quality of life issues affected by all health problems. This study developed a module to use with the WHOQOL tools to improve their sensitivity to Health Related QoL issues relevant to mental health recovery.Methods: Using a sequential mixed-methods approach, two research stages occurred. A qualitative stage invited 88 participants with experience of mental health recovery, into focus groups and importance rating activities, to identify candidate items for the new module. Following this, a quantitative stage involved 667 participants with, and without, mental health/addiction issues completing online or paper-based questionnaires to analyze which candidate items differentiated between those with and without mental health/addiction issues. Classical test theory and iterative Partial Credit Rasch Analysis were used to identify the most suitable candidate items for a reliable and valid mental health recovery module to be used with the WHOQOL tools.Results: Seventeen candidate items captured important HRQoL facets relevant to mental health recovery. Rasch analysis removed 10 misfitting items. The final 7-item module, which demonstrated the best Rasch model fit, enquires about recovery beliefs, identifying strengths, self-awareness, acceptance, capacity to relate, feeling understood, and recovery progress. Ordinal-to-interval conversion tables have been developed to optimize measurement precision when using the module.Conclusions: Important HRQoL issues central to mental health recovery can be reliably evaluated by using the recovery module with the WHOQOL tools. [ABSTRACT FROM AUTHOR]

Purpose: Health-related quality of life (HRQOL) is an important concept to describe well-being of the general population and persons with diseases. The short form-36 (SF-36) is a widely used questionnaire assessing self-reported HRQOL in eight health domains. The aims of this study were to provide normative data for the SF-36 version 2 (SF-36v2) for all language regions in Switzerland and weighting coefficients to calculate two summary measures for physical and mental health.Methods: A random representative (regarding age, sex, and language region) sample of people living in Switzerland aged 18-75 years in 2015 was eligible for our questionnaire survey. We calculated the eight health domain subscales for different subsamples based on sociodemographic characteristics. Two summary measures for physical and mental health were derived using data-based factor score coefficients and calculated for the subsamples.Results: A total of 1209 persons completed the SF-36v2 (mean age 48.7 years, 58.1% women). The SF-36v2 was valid and reliable in Switzerland. Physical health was better in men (p = 0.012) and younger persons (p < 0.001). Mental health was better in men (p < 0.001) and older persons (p < 0.001). Regarding regional differences, we found better physical (p = 0.002) and mental (p < 0.001) health in German speaking persons compared to French and Italian speaking persons.Conclusions: This paper presents the first SF-36v2 normative data for Switzerland, which are based on a recent study in a representative sample. Our normative data and weighting coefficients will enable future studies to compare HRQOL assessed by the SF-36 in healthy and diseased persons to a representative Swiss sample. [ABSTRACT FROM AUTHOR]

An attempt is made in this paper to provide the community of health-related quality-of-life scholars with a hierarchical perspective of positive mental health guided by the concept of positive balance. Specifically, individuals with positive mental health are characterized to experience: (1) a preponderance of neurochemicals related to positive emotions (dopamine, serotonin, etc.) relative to neurochemicals related to negative emotions (cortisol), at a physiological level; (2) a preponderance of positive affect (happiness, joy, etc.) relative to negative affect (anger, sadness, etc.), at an emotional level; (3) a preponderance of domain satisfaction (satisfaction in salient and multiple life domains such as family life and work life) relative to dissatisfaction in other life domains, at a cognitive level; (4) a preponderance of positive evaluations about one's life using certain standards of comparison (satisfaction with one's life compared to one's past life, the life of family members, etc.) relative to negative evaluations about one's life using similar or other standards of comparison, at a meta-cognitive level; (5) a preponderance of positive psychological traits (self-acceptance, personal growth, etc.) relative to negative psychological traits (pessimism, hopelessness, etc.), at a development level; and (6) a preponderance of perceived social resources (social acceptance, social actualization, etc.) relative to perceived social constraints (social exclusion, ostracism, etc.), at a social-ecological level. [ABSTRACT FROM AUTHOR]

Purpose: The PROMIS-29 v2.0 profile assesses pain intensity using a single 0-10 numeric rating item and seven health domains (physical function, fatigue, pain interference, depressive symptoms, anxiety, ability to participate in social roles and activities, and sleep disturbance) using four items per domain. This paper describes the development of physical and mental health summary scores for the PROMIS-29 v2.0.Method: We conducted factor analyses of PROMIS-29 scales on data collected from two internet panels (n = 3000 and 2000).Results: Confirmatory factor analyses provided support for a physical health factor defined by physical function, pain (interference and intensity), and ability to participate in social roles and activities, and a mental health factor defined primarily by emotional distress (anxiety and depressive symptoms). Reliabilities for these two summary scores were 0.98 (physical health) and 0.97 (mental health). Correlations of the PROMIS-29 v2.0 physical and mental health summary scores with chronic conditions and other health-related quality of life measures were consistent with a priori hypotheses.Conclusions: This study develops and provides preliminary evidence supporting the reliability and validity of PROMIS-29 v2.0 physical and mental health summary scores that can be used in future studies to assess impacts of health care interventions and track changes in health over time. Further evaluation of these and alternative summary measures is recommended. [ABSTRACT FROM AUTHOR]

Background: No current guidance is available in the UK on the choice of preference-based measure (PBM) that should be used in obtaining health-related quality of life from children. The aim of this study is to review the current usage of PBMs for obtaining health state utility values in child and adolescent populations, and to obtain information on patient and parent-proxy respondent preferences in completing PBMs in the UK.Methods: A literature review was conducted to determine which instrument is most frequently used for child-based economic evaluations and whether child or proxy responses are used. Instruments were compared on dimensions, severity levels, elicitation and valuation methods, availability of value sets and validation studies, and the range of utility values generated. Additionally, a series of focus groups of parents and young people (11-20 years) were convened to determine patient and proxy preferences.Results: Five PBMs suitable for child populations were identified, although only the Health Utilities Index 2 (HUI2) and Child Heath Utility 9D (CHU-9D) have UK value sets. 45 papers used PBMs in this population, but many used non-child-specific PBMs. Most respondents were parent proxies, even in adolescent populations. Reported missing data ranged from 0.5 to 49.3%. The focus groups reported their experiences with the EQ-5D-Y and CHU-9D. Both the young persons' group and parent/proxy groups felt that the CHU-9D was more comprehensive but may be harder for a proxy to complete. Some younger children had difficulty understanding the CHU-9D questions, but the young persons' group nonetheless preferred responding directly.Conclusion: The use of PBMs in child populations is increasing, but many studies use PBMs that do not have appropriate value sets. Parent proxies are the most common respondents, but the focus group responses suggest it would be preferred, and may be more informative, for older children to self-report or for child-parent dyads to respond. [ABSTRACT FROM AUTHOR]

Purpose: Multidimensional item response theory and computerized adaptive testing (CAT) are increasingly used in mental health, quality of life (QoL), and patient-reported outcome measurement. Although multidimensional assessment techniques hold promises, they are more challenging in their application than unidimensional ones. The authors comment on minimal standards when developing multidimensional CATs.Methods: Prompted by pioneering papers published in QLR, the authors reflect on existing guidance and discussions from different psychometric communities, including guidelines developed for unidimensional CATs in the PROMIS project.Results: The commentary focuses on two key topics: (1) the design, evaluation, and calibration of multidimensional item banks and (2) how to study the efficiency and precision of a multidimensional item bank. The authors suggest that the development of a carefully designed and calibrated item bank encompasses a construction phase and a psychometric phase. With respect to efficiency and precision, item banks should be large enough to provide adequate precision over the full range of the latent constructs. Therefore CAT performance should be studied as a function of the latent constructs and with reference to relevant benchmarks. Solutions are also suggested for simulation studies using real data, which often result in too optimistic evaluations of an item bank's efficiency and precision.Discussion: Multidimensional CAT applications are promising but complex statistical assessment tools which necessitate detailed theoretical frameworks and methodological scrutiny when testing their appropriateness for practical applications. The authors advise researchers to evaluate item banks with a broad set of methods, describe their choices in detail, and substantiate their approach for validation. [ABSTRACT FROM AUTHOR]

Purpose: Economic evaluations of mental health interventions often measure health benefit in terms of utility values derived from the EQ-5D. For the five-level version of the EQ-5D, there are two methods of estimating utility [crosswalk and stated preference (5L-SP)]. This paper explores potential impacts for researchers and decision-makers when comparing utility values derived from either method in the specific context of mental health.Methods: Baseline EQ-5D-5L data from three large randomised controlled trials of interventions for mental health conditions were analysed. Utility values were generated using each method. Mean utility values were compared using a series of t tests on pooled data and subgroups. Scenario analyses explored potential impacts on cost-effectiveness decisions.Results: EQ-5D data were available for 1399 participants. The mean utility value for each trial was approximately 0.08 higher when estimated using the 5L-SP approach compared to crosswalk (p < 0.0001). The difference was greatest among people reporting extreme anxiety/depression (mean utility 5L-SP 0.309, crosswalk 0.084; difference = 0.225; p < 0.0001). Identical improvements in health status were associated with higher costs to gain one QALY with the 5L-SP approach; this is more pronounced when improvements are across all domains compared to improvements on the anxiety/depression domain only.Conclusions: The two approaches produce significantly different utility values in people with mental health conditions. Resulting differences in cost per QALY estimates suggest that thresholds of cost-effectiveness may also need to be reviewed. Researchers and decision-makers should exercise caution when comparing or synthesising data from trials of mental health interventions using different utility estimation approaches. [ABSTRACT FROM AUTHOR]

Background: Patients are participating more actively in health care decision-making with regard to their health, as well as in the broader realm of assessing the value of medical products and influencing decisions about their registration and reimbursement. There is an increasing trend to include patients' perspectives throughout the stages of medical product development by broadening the traditional study-participant role to that of an active partner throughout the process. Including patients in the selection and development of clinical outcome assessments (COAs) to evaluate the benefit of treatment is particularly important. Still, despite widespread enthusiasm, there is substantial uncertainty regarding how and when to engage patients in this process.Purpose: This manuscript proposes a methodological framework for engaging patients at varying levels in the selection and development of COAs for medical product development.Framework: The framework builds on the Food and Drug Administration's roadmap for patient-focused COA. Methods for engaging patients across each stage in this roadmap are summarized by levels of engagement. Opportunities and examples of patient engagement (PE) in the selection and/or development of COAs are summarized, together with best practices and practical considerations.Conclusion: This paper offers a framework for understanding, planning, and implementing methods to advance PE in the selection and/or development of COAs for evaluating the benefit of medical products. The intent is to further this important discussion and enhance the process and outcome of PE in this context. [ABSTRACT FROM AUTHOR]

Purpose: For many transgender individuals, medical intervention is necessary to live as their desired gender. However, little is known about Contextual Factors (i.e., Environmental and Personal) that may act as facilitators and barriers in the health of transgender individuals. Therefore, this paper sought to examine Contextual Factors of the World Health Organization's International Classification of Functioning, Disability, and Health that may facilitate or negatively impact the physical, psychological, and social functioning of transgender individuals.Methods: A literature review was conducted to identify Environmental and Personal Factors that may influence transgender individuals' physical, psychological, and social functioning. Seven electronic databases were searched. In total, 154 records were reviewed, and 41 articles and other records met inclusion criteria.Results: Three general themes emerged for Environmental Factors: family and social networks, education, and health care. Three general themes also emerged for Personal Factors: socioeconomic status, race, and age.Conclusions: Transgender individuals benefit from gender-affirming services, improved family and social support systems, and competent provider care. Educational training programs, including medical curricula or workshops, might provide the greatest benefit in improving transgender health by increasing the knowledge and cultural competency of health professionals working with this population. Given the diversity of gender expression, differences in lived experiences, and potential for enduring persistent "double discrimination" due to the intersectional relationships between socioeconomic status, race, and/or age, health professionals must approach transgender health using a holistic lens such as the World Health Organization's International Classification of Functioning, Disability, and Health. [ABSTRACT FROM AUTHOR]

Purpose: Character strength is described as a positive and organized pattern of emotions, thoughts, and behaviors. It serves as a schema that organizes categories of information toward the self, others, and the world, and provides the self-aware knowledge that facilitates the pursuit of goals, values, and ethical principles. Recent research has suggested that three reliable factors emerge from the measures of character strengths: caring, inquisitiveness, and self-control. The goal of this paper is to develop a psychometrically sound short measure of character strength.Methods: The questions were addressed in two studies using two independent samples: a cross-cultural (i.e., 518 Asians and 556 Westerners) sample, and a cross-population (i.e., 175 community participants and 171 inpatients) sample in China.Results: Findings from the exploratory and confirmatory factor analysis suggested a cross-cultural three-factor model of character strength that could be measured by the Three-dimensional Inventory of Character Strengths (TICS). A multigroup confirmatory factor analysis further indicated that the number of factors and factor loadings was invariant in the medical and community samples. This result indicated that the brief inventory could be applied to a medical context. Internal reliability, content validity, and predictive validity were good, although the predictive validity of the three character strengths for psychological symptoms in the medical sample was more modest than that in the community sample.Conclusions: TICS is expected to be used for screening populations at risk, and a tool to aid mental health professionals in group-based treatment/intervention planning. It also should be noted that this short inventory should be used with caution for individual decision making. [ABSTRACT FROM AUTHOR]

Purpose: The concept of maximising well-being, as opposed to merely treating mental disorder, is a powerful current theme in the area of mental health. Clearly this emphasises the need for appropriate valid and reliable measures of general well-being. This paper examines the appropriateness of a number of measures in this area and concludes that existing assessment tools fail to address the full range of aspects of personal well-being. This paper therefore presents the psychometric properties, validity and reliability of a new measure of well-being-the BBC Well-being Scale. Methods: A total of 1,940 participants completed the new measure, the Goldberg scales of anxiety and depression, the 'List of Threatening Experiences' life events scale, a modified version of the Response Styles Questionnaire and a modified version of the Internal, Personal and Situational Attributions Questionnaire presented via the internet. Results: Exploratory factor-analysis suggested a three-factor solution including themes of psychological well-being, physical health and well-being and relationships. The total 24-item scale had good internal consistency (α = .935) and correlated significantly with key demographic variables and measures of concurrent validity. Conclusions: The new measure-the BBC Well-being Scale-is recommended for research and clinical purposes. [ABSTRACT FROM AUTHOR]

Purpose: The Patient-Reported Outcomes Measurement Information System® (PROMIS®) was designed to develop, validate, and standardize item banks to measure key domains of physical, mental, and social health in chronic conditions. This paper reports the calibration and validation testing of the PROMIS Self-Efficacy for Managing Chronic Conditions measures.Methods: PROMIS Self-Efficacy for Managing Chronic Conditions item banks comprise five domains, Self-Efficacy for Managing: Daily Activities, Symptoms, Medications and Treatments, Emotions, and Social Interactions. Banks were calibrated in 1087 subjects from two data sources: 837 patients with chronic neurologic conditions (epilepsy, multiple sclerosis, neuropathy, Parkinson disease, and stroke) and 250 subjects from an online Internet sample of adults with general chronic conditions. Scores were compared with one legacy scale: Self-Efficacy for Managing Chronic Disease 6-Item scale (SEMCD6) and five PROMIS short forms: Global Health (Physical and Mental), Physical Function, Fatigue, Depression, and Anxiety.Results: The sample was 57% female, mean age = 53.8 (SD = 14.7), 76% white, 21% African American, 6% Hispanic, and 76% with greater than high school education. Full-item banks were created for each domain. All measures had good internal consistency and correlated well with SEMCD6 (r  = 0.56-0.75). Significant correlations were seen between the Self-Efficacy measures and other PROMIS short forms (r  > 0.38).Conclusions: The newly developed PROMIS Self-Efficacy for Managing Chronic Conditions measures include five domains of self-efficacy that were calibrated across diverse chronic conditions and show good internal consistency and cross-sectional validity. [ABSTRACT FROM AUTHOR]

Purposes: There is evidence of an increasing emphasis on the relevance of the quality of life-paradigm as an outcome measure for clients in geriatric, forensic, as well as correctional care. This paper aims to explore to what extent variables that were categorized according to the main areas of the Good Lives Model ('the self', 'the body' and 'social life') are related to the quality of life domains of older imprisoned offenders.Methods: Data were collected by means of a structured questionnaire administered in individual interviews with 93 older prisoners aged 60 years and over in 16 prisons of the Dutch-speaking region in Belgium. Characteristics of the main GLM-areas were identified by specifically designed items as well three validated instruments (psychiatric disorders, loneliness, and frailty). Dependent variables consisted of the four sub-domains of the WHOQOL-BREF instrument which measures quality of life in four domains, namely: (1) physical health, (2) psychological health, (3) social relationships, and (4) environment. Structural equation modelling (SEM) was used for statistical analysis.Results: Individual variables, such as satisfaction with activities, were related to the older prisoners' QoL in several domains simultaneously. Other than suicidal ideation, psychopathological symptoms had no significant relation to quality of life.Conclusions: Approaches enabling older prisoner to disclose their interests, experiences, and feelings are important in prison. Special attention should be given to psychiatric and age-related symptoms of older prisoners, since they may not be noted by the prison staff, as older prisoners seem to be poorer self-advocates as compared to their younger peers. [ABSTRACT FROM AUTHOR]

Purpose: It has been argued that generic health-related quality of life measures are not sensitive to certain disease-specific improvements; condition-specific preference-based measures may offer a better alternative. This paper assesses the validity, responsiveness and sensitivity of a cancer-specific preference-based measure, the EORTC-8D, relative to the EQ-5D-3L.Methods: A longitudinal prospective population-based cancer genomic cohort, Cancer 2015, was utilised in the analysis. EQ-5D-3L and the EORTC QLQ-C30 (which gives EORTC-8D values) were asked at baseline (diagnosis) and at various follow-up points (3 months, 6 months, 12 months). Baseline values were assessed for convergent validity, ceiling effects, agreement and sensitivity. Quality-adjusted life-years (QALYs) were estimated and similarly assessed. Multivariate regression analyses were employed to understand the determinants of the difference in QALYs.Results: Complete case analysis of 1678 patients found that the EQ-5D-3L values at baseline were significantly lower than the EORTC-8D values (0.748 vs 0.829, p < 0.001). While the correlation between the instruments was high, agreement between the instruments was poor. The baseline health state values using both instruments were found to be sensitive to a number of patient and disease characteristics, and discrimination between disease states was found to be similar. Mean generic QALYs (estimated using the EQ-5D-3L) were significantly lower than condition-specific QALYs (estimated using the EORTC-8D) (0.860 vs 0.909, p < 0.001). The discriminatory power of both QALYs was similar.Conclusions: When comparing a generic and condition-specific preference-based instrument, divergences are apparent in both baseline health state values and in the estimated QALYs over time for cancer patients. The variability in sensitivity between the baseline values and the QALY estimations means researchers and decision makers are advised to be cautious if using the instruments interchangeably. [ABSTRACT FROM AUTHOR]

Purpose: Educational attainment has been shown to be positively associated with mental health and a potential buffer to stressful events. One stressful life event likely to affect everyone in their lifetime is bereavement. This paper assesses the effect of educational attainment on mental health post-bereavement.Methods: By utilising large administrative datasets, linking Census returns to death records and prescribed medication data, we analysed the bereavement exposure of 208,332 individuals aged 25-74 years. Two-level multi-level logistic regression models were constructed to determine the likelihood of antidepressant medication use (a proxy of mental ill health) post-bereavement given level of educational attainment.Results: Individuals who are bereaved have greater antidepressant use than those who are not bereaved, with over a quarter (26.5 %) of those bereaved by suicide in receipt of antidepressant medication compared to just 12.4 % of those not bereaved. Within individuals bereaved by a sudden death, those with a university degree or higher qualifications are 73 % less likely to be in receipt of antidepressant medication compared to those with no qualifications, after full adjustment for demographic, socio-economic and area factors (OR 0.27, 95 % CI 0.09,0.75). Higher educational attainment and no qualifications have an equivalent effect for those bereaved by suicide.Conclusions: Education may protect against poor mental health, as measured by the use of antidepressant medication, post-bereavement, except in those bereaved by suicide. This is likely due to the improved cognitive, personal and psychological skills gained from time spent in education. [ABSTRACT FROM AUTHOR]

Background: Increased immigration requires successful interaction of different cultures in various life domains, such as health. This study investigates acculturation orientation (AO) of immigrant patients and doctors native to the country, as a potential factor related to perceived medical advice adherence.Data and Methods: N = 171 immigrant patients (M = 54.38 years, SD = 17.94, range = 23-96, 74.3 % female) and their N = 12 doctors (M = 38.88 years, SD = 13.42, range = 27-66, 83 % female) from a hospital in Montreal, Canada, participated in a paper-based survey to assess AOs, patients' perceived expectations of their doctor (regarding adopting the new culture or keeping their previous culture), doctors' actual expectations, perceived quality of care and perceived adherence.Results: AO of patients significantly related to perceived adherence, via a path model involving perceptions of doctors' expectations and perceived quality of care. Integration was positively related to perceived adherence, while Marginalization was negatively related to it. Doctors' AOs were not significant.Conclusion: Patient perceptions seem to be a significant factor to be considered when striving to improve immigrant medical advice adherence. [ABSTRACT FROM AUTHOR]

Background: Recent work on patient-reported outcomes (PROs) focuses on precise, brief measures, which generally convey little about what an individual's rating actually means. Individual differences in appraisal are important and relevant to PRO research. This paper highlights the advantages of integrating appraisal assessment into clinical research.Methods: The most comprehensive method for assessing appraisal, the quality of life (QOL) Appraisal Profile, includes open-ended and multiple choice questions to assess four appraisal parameters: frame of reference, sampling of experience, standards of comparison, and combinatory algorithm. We illustrate with empirical findings four classes of investigation that would benefit from appraisal assessment: methodological, interpretation of change, the backstory of resilience, and clinical applications.Results: A methodological investigation of HIV/AIDS patients revealed a range of cognitive schemas induced by the then-test response shift detection method, only 15% of which reflected the presumed process invoked. In this same study and in a study of people with multiple sclerosis (MS), interpretation of change in positive versus negative mental-health response shifts was characterized by different appraisal processes. In studying resilience in MS patients, patients with more reserve-building activities were more likely to use appraisals that emphasized the positive and more controllable aspects of their illness experience, as compared to lower-reserve patients. In underserved cancer patients, the QOL Appraisal Profile was used as a clinical interview to articulate current concerns and for personalized treatment decision-making to reduce burden and promote adherence.Conclusions: Integrating appraisal assessment can provide a more textured, person-centered understanding of person-factors not captured by standard PROs. [ABSTRACT FROM AUTHOR]

Background: The Partners in Health (PIH) scale is a measure designed to assess the generic knowledge, attitudes, behaviors, and impacts of self-management. A cross-cultural adaptation of the PIH for use in Hong Kong was evaluated in this study. This paper reports the validity and reliability of the Chinese version of PIH (C-PIH[HK]).Method: A 12-item PIH was translated using forward-backward translation technique and reviewed by individuals with chronic diseases and health professionals. A total of 209 individuals with chronic diseases completed the scale. The construct validity, internal consistency, and test-retest reliability were evaluated in two waves.Results: The findings in Wave 1 (n = 73) provided acceptable psychometric properties of the C-PIH(HK) but supported the adaptation of question 5 to improve the cultural relevance, validity, and reliability of the scale. An adapted version of C-PIH(HK) was evaluated in Wave 2. The findings in Wave 2 (n = 136) demonstrated good construct validity and internal consistency of C-PIH(HK). A principal component analysis with Oblimin rotation yielded a 3-factor solution, and the Cronbach's alphas of the subscales ranged from 0.773 to 0.845. Participants were asked whether they perceived the self-management workshops they attended and education provided by health professionals as useful or not. The results showed that the C-PIH(HK) was able to discriminate those who agreed and those who disagreed related to the usefulness of individual health education (p < 0.0001 in all subscales) and workshops (p < 0.001 in the knowledge subscale) as hypothesized. The test-retest reliability was high (ICC = 0.818).Conclusion: A culturally adapted version of PIH for use in Hong Kong was evaluated. The study supported good construct validity, discriminate validity, internal consistency, and test-retest reliability of the C-PIH(HK). [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to estimate the comorbidity of mental disorders and chronic physical conditions and to describe the impact of these conditions on health-related quality of life (HRQoL) in a sample of older primary care (PC) attendees by gender.Methods: Cross-sectional survey, conducted in 77 PC centres in Catalonia (Spain) on 1192 patients over 65 years old. Using face-to-face interviews, we assessed HRQoL (SF-12), mental disorders (SCID and MINI structured clinical interviews), chronic physical conditions (checklist), and disability (Sheehan disability scale). We used multivariate quantile regressions to model which factors were associated with the physical component summary-short form 12 and mental component summary-short form 12.Result: The most frequent comorbidity in both men and women was mood disorder with chronic pain and arthrosis. Mental disorders mainly affected 'mental' QoL, while physical disorders affected 'physical' QoL. Mental disorders had a greater impact on HRQoL than chronic physical conditions, with mood and adjustment disorders being the most disabling conditions. There were some gender differences in the impact of mental and chronic physical conditions on HRQoL. Anxiety disorders and pain had an impact on HRQoL but only in women. Respiratory diseases had an effect on the MCS in women, but only affected the PCS in men.Conclusions: Mood and adjustment disorders had the greatest impact on HRQoL. The impact profile of mental and chronic physical conditions differs between genders. Our results reinforce the need for screening for mental disorders (mainly depression) in older patients in PC. [ABSTRACT FROM AUTHOR]

Purpose: To classify and identify the main characteristics of the tools used in practice to assess the impact of elderly caregiving on the informal carers' life.Methods: A systematic review of literature was performed searching in Embase, MEDLINE, PsycINFO, CINAHL, IBECS, LILACS, SiiS, SSCI and Cochrane Library from 2009 to 2013 in English, Spanish, Portuguese and French, and in reference lists of included papers.Results: The review included 79 studies, among them several in languages other than English. Their inclusion increased the variety of identified tools to measure this impact (n = 93) and allowed a wider analysis of their geographical use. While confirming their overlapping nature, instruments were classified according to the degree of integration of dimensions they evaluated and their specificity to the caregiving process: caregiver burden (n = 20), quality of life and well-being (n = 11), management and coping (n = 21), emotional and mental health (n = 29), psychosocial impact (n = 10), physical health and healthy habits (n = 2), and other measures. A high use in practice of tools not validated yet and not caregiver-specific was identified.Conclusions: The great variety and characteristics of instruments identified in this review confirm the complexity and multidimensionality of the effects of elderly caregiving on the informal carer's life and explain the difficulties to assess these effects in practice. According to the classification provided, caregiver burden and emotional and mental health are the most evaluated dimensions. However, further work is required to develop integrated and caregiving focused procedures that can appraise this complexity across different countries and cultures. [ABSTRACT FROM AUTHOR]

Objective: This paper evaluates the effectiveness of motivational enhancement therapy plus cognitive behavioural therapy on depressive symptoms, glycosylated haemoglobin, fasting glucose, body mass index (BMI), and health-related quality of life in type II diabetes patients.Methods: A controlled trial was conducted to compare patients who received the behavioural intervention with untreated controls on measures of health outcomes. A total of 31 intervention group participants and 30 controls were selected from patients that met the inclusion criteria from a hospital-based endocrinology outpatient department. The outcome measures including depressive symptoms, glycosylated haemoglobin, fasting glucose, BMI, and both physical and mental quality of life were collected before (T1), after (T2), and after 90 days (T3) following the intervention.Results: The experimental group showed a significant reduction in glycosylated haemoglobin, fasting glucose, and depressive symptoms and a significant increase in physical quality of life and mental quality of life at T2 and T3, while patients in the control group with usual care showed no changes over time.Conclusion: The behavioural intervention facilitated a significant improvement in psychological adjustment and glycemic control, thus strengthening diabetes control skills and leading to healthy outcomes. It is feasible that nurses and psychiatrists can deliver the behavioural intervention for diabetes patients to decrease their depressive symptoms. Sharing discussion and problem-solving experiences is particularly helpful method for self-control, and these will be beneficially influential on further research. [ABSTRACT FROM AUTHOR]

Purpose: To derive EQ-5D-5L Spanish population norms based on a national representative sample adjusted by age, gender and region.Methods: A representative sample of the Spanish general population (n = 21,007) was used in a cross-sectional study. The source of data was the Spanish National Health Survey 2011-2012. All socio-demographic factors and clinical characteristics were carried to a descriptive analysis. All variables were stratified by region, gender and age-group.Results: The utility value 1 is the most repeated (62%) in this representative population sample. This study showed a deterioration of health states as age increases. Overall, men reported better health status than women. In relation to ceiling effect by regions, there was little difference with the highest scores. Conversely, the lowest score corresponds to Galicia.Conclusions: The paper reports EQ-5D-5L normative data for Spanish general population, based on a national representative sample adjusted by region, gender and age-group. These results may serve as reference data of the population health status. A regional difference in health status could be observed, which might suggest that policies aiming to reduce regional inequalities are important. [ABSTRACT FROM AUTHOR]

Objective: The clinical symptoms of schizophrenia are associated with serious social, quality of life and functioning alterations. Typically, data on health utilities are not available in clinical studies in schizophrenia. This makes the economic evaluation of schizophrenia treatments challenging. The purpose of this article was to provide a mapping function to predict unobserved utility values in patients with schizophrenia from the available clinical and socio-demographic information.Methods: The analysis was performed using data from EuroSC, a 2-year, multi-centre, cohort study conducted in France (N = 288), Germany (N = 618), and the UK (N = 302), totalling 1208 patients. Utility was calculated based on the EQ-5D questionnaire. The relationships between the utility values and the patients' socio-demographic and clinical characteristics (Positive and Negative Syndrome Scale--PANSS, Calgary Depression Scale for Schizophrenia--CDSS, Global Assessment of Functioning--GAF, extra-pyramidal symptoms measured by Barnes Akathisia Scale-BAS, age, sex, country, antipsychotic type) were modelled using a random and a fixed individual effects panel linear model.Results: The analysis demonstrated the prediction ability of the used parameters for estimating utility measures in patients with schizophrenia. Although there are small variations between countries, the same variables appear to be the key predictors. From a clinical perspective, age, gender, psychopathology, and depression were the most important predictors associated with the EQ-5D.Conclusion: This paper proposed a reliable, robust and easy-to-apply mapping method to estimate EQ-5D utilities based on demographic and clinical measures in schizophrenia. [ABSTRACT FROM AUTHOR]

Purpose: The macular degeneration quality of life (MacDQoL) instrument is a validated condition-specific measure of quality of life in patients with macular degeneration. This paper presents the first mapping algorithm to predict EQ-5D from responses to the MacDQoL instrument.Methods: Responses to the MacDQoL and EQ-5D-3L instruments from 482 patients were collected from the IVAN multicentre trial of two alternative drug treatments for neovascular age-related macular degeneration. Regression specifications were estimated using OLS, censored least absolute deviation, Tobit and two-part models. Their predictive performance was assessed using mean squared error. An internal validation sample based on a random selection of 25 % of patients was used to assess the performance of the model estimated on the remaining 75 % of patients.Results: A two-part model had the best predictive performance on the full sample. The covariates of this model include responses and weighted impact scores for all 23 condition-specific domains of the MacDQoL, and responses to a general MacDQoL quality of life question. The selected models were successful at predicting means and standard deviations of target populations, but prediction is weaker at the upper and lower extremes of the EQ-5D-3L distribution.Conclusion: The mapping algorithms provide a means of predicting EQ-5D-3L index scores from MacDQoL scores, and could facilitate cost-effectiveness analyses when the latter but not the former are available to researchers. Further validation of the performance of the algorithms using external data would provide a means of establishing the robustness of the algorithms. [ABSTRACT FROM AUTHOR]

Purpose: The Strengths and Difficulties Questionnaire (SDQ) is a behavioural screening tool for children. The SDQ is increasingly used as the primary outcome measure in population health interventions involving children, but it is not preference based; therefore, its role in allocative economic evaluation is limited. The Child Health Utility 9D (CHU9D) is a generic preference-based health-related quality of-life measure. This study investigates the applicability of the SDQ outcome measure for use in economic evaluations and examines its relationship with the CHU9D by testing previously published mapping algorithms. The aim of the paper is to explore the feasibility of using the SDQ within economic evaluations of school-based population health interventions.Methods: Data were available from children participating in a cluster randomised controlled trial of the school-based roots of empathy programme in Northern Ireland. Utility was calculated using the original and alternative CHU9D tariffs along with two SDQ mapping algorithms. t tests were performed for pairwise differences in utility values from the preference-based tariffs and mapping algorithms.Results: Mean (standard deviation) SDQ total difficulties and prosocial scores were 12 (3.2) and 8.3 (2.1). Utility values obtained from the original tariff, alternative tariff, and mapping algorithms using five and three SDQ subscales were 0.84 (0.11), 0.80 (0.13), 0.84 (0.05), and 0.83 (0.04), respectively. Each method for calculating utility produced statistically significantly different values except the original tariff and five SDQ subscale algorithm.Conclusion: Initial evidence suggests the SDQ and CHU9D are related in some of their measurement properties. The mapping algorithm using five SDQ subscales was found to be optimal in predicting mean child health utility. Future research valuing changes in the SDQ scores would contribute to this research. [ABSTRACT FROM AUTHOR]

Purpose: The Patient-Reported Outcomes Measurement Information System (PROMIS(®)) is a new, state-of-the-art assessment system for measuring patient-reported health and well-being of adults and children. It has the potential to be more valid, reliable, and responsive than existing PROMs. The items banks are designed to be self-reported and completed by children aged 8-18 years. The PROMIS items can be administered in short forms or through computerized adaptive testing. This paper describes the translation and cultural adaption of nine PROMIS item banks (151 items) for children in Dutch-Flemish.Methods: The translation was performed by FACITtrans using standardized PROMIS methodology and approved by the PROMIS Statistical Center. The translation included four forward translations, two back-translations, three independent reviews (at least two Dutch, one Flemish), and pretesting in 24 children from the Netherlands and Flanders.Results: For some items, it was necessary to have separate translations for Dutch and Flemish: physical function-mobility (three items), anger (one item), pain interference (two items), and asthma impact (one item). Challenges faced in the translation process included scarcity or overabundance of possible translations, unclear item descriptions, constructs broader/smaller in the target language, difficulties in rank ordering items, differences in unit of measurement, irrelevant items, or differences in performance of activities. By addressing these challenges, acceptable translations were obtained for all items.Conclusion: The Dutch-Flemish PROMIS items are linguistically equivalent to the original USA version. Short forms are now available for use, and entire item banks are ready for cross-cultural validation in the Netherlands and Flanders. [ABSTRACT FROM AUTHOR]

Purpose: This paper describes the long-term health and quality of life (QOL) outcomes of Vietnam veterans with combat-related limb loss.Methods: This mixed-method, cross-sectional study analyzes survey data of 247 Vietnam veterans with combat-related limb loss measuring several comorbidities [measured as ever diagnosed], PTSD using the PTSD Checklist Military (PCL-M), depression using the Patient Health Questionnaire (PHQ-8), and QOL using the SF-12. In-depth interviews with 20 such veterans about their health and QOL experiences were conducted.Results: Of 247 Vietnam veterans, most report good to excellent health (79.7 %) and several comorbidities: arthritis (61.1 %), cardiovascular disease (18.2 %), diabetes (22.7 %), obesity (17.4 %), phantom-limb pain (76.1 %), back pain (76.5 %), PTSD (15.8 %), and depression (17.8 %). Those with depression fared worse on the SF-12 physical component summary score (PCS), whereas those with arthritis, depression, and PTSD fared worse on the SF-12 mental component summary score. Interview data describe these comorbidities and QOL from the veterans' perspective and illustrate how such comorbidities may be directly related to the veterans' combat and/or limb loss experiences.Conclusion: The prevalence of these health issues and the adverse effects of some of these on QOL underscore the importance of effective rehabilitation over the life course, especially including better mental health care and pain management. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this paper is to identify which domains of health-related quality of life (HRQoL) are most important for patients with chronic obstructive pulmonary disease (COPD), from the perspective of healthcare professionals (HCPs). Methods: Thirteen Dutch HCPs [six pulmonologists, three pulmonology nurse practitioners, two physiotherapists and two general practitioners; 9 men; mean age 51.0 (SD = 10.6) years; mean years of experience 12.1 (SD = 7.2)] specialized in the field of COPD were recruited. The only inclusion criterion was that the HCP had to have extensive experience in treating COPD patients. The face-to-face interviews took 30-40 min. Results: Physical health emerged as the most important theme from the spontaneous statements that HCPs made when asked about HRQoL in relation to COPD, closely followed by social health and coping with COPD-related complaints and restrictions. The most frequently selected PROMIS domains were fatigue, physical function, emotional support and depression. If the related domains satisfaction with participation in social roles and activities and ability to participate in social roles and activities were to be combined, it would come in second place after fatigue. Conclusion: When comparing the domains chosen by HCPs to the ones chosen by patients in a recent study, there is a high degree of agreement, with the exception of depression. We argue that it is important to take into account both patient and HCP perspective when developing/selecting HRQoL instruments. Our results may be used to inform domain selection to measure HRQoL in patients with COPD, as well as instrument development. [ABSTRACT FROM AUTHOR]

Purpose: To review the literature focusing on the effects of dietary behavioural changes on cancer patients' health-related quality of life (HRQOL). Methods: Relevant databases were searched for studies that report the relationship between dietary changes and HRQOL of people with cancer and synthesized and systematically reviewed the available evidence. Papers were assessed for methodological quality, and the themes identified were summarized. Results: The selected studies included only randomized control trials, which target changes in diet. Twelve studies were identified, which focus on the association between lifestyle changes that included changes in diet and HRQOL among cancer patients. Results have been mixed, and dietary changes have been shown to partly affect HRQOL, but other factors seem to be important as well in defining that relationship. Moreover, cancer groups with higher survival rates (prostate, breast, colorectal) seem to benefit more from dietary changes, while different HRQOL constructs are affected with no clear indication of directional benefits on physical or mental health. Conclusions: Even though there are some indications of a direct relationship between dietary changes and HRQOL, further research should establish which areas of HRQOL are directly affected. Perhaps, nutritional changes in future interventions can be isolated in order to identify a potential direct relationship with HRQOL. [ABSTRACT FROM AUTHOR]

Purpose: Quality-adjusted life years (QALYs) represent a critical metric in economic evaluations impacting key healthcare decisions in many countries. However, there is widespread disagreement as to which is the best of the health state utility (HSU) instruments that are designed to measure the Q in the QALY. Instruments differ in their descriptive systems as well as their valuation methodologies; that is, they simply measure different things. We propose a visual framework that can be utilized to make meaningful comparisons across HSU instruments. Methods: The framework expands on existing HRQoL models, by incorporating four distinctive continua, and by putting HRQoL within the broader notion of subjective well-being (SWB). Using this conceptual map, we locate the five most widely used HSU-instruments (EQ-5D, SF-6D, HUI, 15D, AQoL). Results: By individually mapping dimensions onto this visual framework, we provide a clear picture of the significant conceptual and operational differences between instruments. Moreover, the conceptual map demonstrates the varying extent to which each instrument moves outside the traditional biomedical focus of physical health, to also incorporate indicators of mental health and social well-being. Conclusion: Our visual comparison provides useful insights to assess the suitability of different instruments for particular purposes. Following on from this comparative analyses, we extract some important lessons for a new instrument that cover the domains of physical, mental and social aspects of health, i.e. it is in alignment with the seminal 1948 WHO definition of health. [ABSTRACT FROM AUTHOR]

Purpose: Patient-reported outcome measures (PROMs) are commonly collected in trials and some care settings, but preference-based PROMs required for economic evaluation are often missing. For these situations, mapping models are needed to predict preference-based (aka utility) scores. Our objective is to develop a series of mapping models to predict preference-based scores from two mental health PROMs: Patient Health Questionnaire-9 (PHQ-9; depression) and Generalised Anxiety Questionnaire-7 (GAD-7; anxiety). We focus on preference-based scores for the more physical-health-focussed EQ-5D (five-level England and US value set, and three-level UK cross-walk) and more mental-health-focussed Recovering Quality-of-Life Utility Index (ReQoL-UI). Methods: We used trial data from the Improving Access to Psychological Therapies (IAPT) mental health services (now called NHS Talking Therapies), England, with a focus on people with depression and/or anxiety caseness. We estimated adjusted limited dependent variable or beta mixture models (ALDVMMs or Betamix, respectively) using GAD-7, PHQ-9, age, and sex as covariates. We followed ISPOR mapping guidance, including assessing model fit using statistical and graphical techniques. Results: Over six data collection time-points between baseline and 12-months, 1340 observed values (N ≤ 353) were available for analysis. The best fitting ALDVMMs had 4-components with covariates of PHQ-9, GAD-7, sex, and age; age was not a probability variable for the final ReQoL-UI mapping model. Betamix had practical benefits over ALDVMMs only when mapping to the US value set. Conclusion: Our mapping functions can predict EQ-5D-5L or ReQoL-UI related utility scores for QALY estimation as a function of variables routinely collected within mental health services or trials, such as the PHQ-9 and/or GAD-7. [ABSTRACT FROM AUTHOR]

Background: Physical and mental component summary scores (PCS and MCS, respectively) are often used to summarise SF-36 quality of life subscales. This paper investigates PCS and MCS across the life course and compares the trajectories obtained from two different methods of calculation. Methods: The Australian Longitudinal Study on Women's Health is a population-based study with three cohorts of women and SF-36 surveys taken at multiple time points. Scoring coefficients for each component score were determined using factor analysis with uncorrelated (orthogonal) and correlated (oblique) rotation at the baseline survey, which were then used to compute correlated and uncorrelated PCS and MCS scores at each survey (scaled to have mean of 50 and standard deviation of 10 at baseline). Results: For both methods, PCS declined progressively across the lifespan, while MCS rose in young and mid-age women to a peak and subsequently declined in later life. Differences were apparent between correlated and uncorrelated scores, most notably for MCS in the older cohort, where correlated MCS reached 54.6 but still less than uncorrelated MCS, with a random effects model indicating 1.63 (95 % confidence intervals 1.58-1.67) units difference; it then declined to a score of 51.2 by the last survey and the difference widened to 3.44 (3.38-3.50) units compared with the uncorrelated MCS. Conclusions: PCS and MCS have distinct trajectories through life, with differences in results from correlated and uncorrelated component summary scores. The divergence is most notable with MCS, especially for older women, suggesting that correlated MCS and PCS should be used when examining change in health over time in this age group. [ABSTRACT FROM AUTHOR]

Purpose: To provide population norms for the Euro-QoL-5D (EQ-5D) according to age, sex, ethnicity and language version using a representative sample of adults aged 18 years and above in the Singapore population. Methods: A total of 5,594 respondents who completed the self-administrated paper-based EQ-5D in the Singapore Mental Health Study were included in this study. Socio-demographic characteristics were captured using a structured questionnaire. Results: The mean age of the sample was 40 years, females comprised 52.2 % of the sample and 78 % were of Chinese descent. Pain/discomfort was the most frequently reported problem (15.3 %) followed by anxiety/depression (8.2 %), whilst self-care (0.5 %) was the least frequently reported problem in the Singapore population. Multiple linear regression analysis revealed that younger age, higher income, those employed and those administered English version of the questionnaire were significantly associated with higher EQ-5D index. Conclusions: This article provides important population norms for the EQ-5D for measuring health-related quality of life (HRQOL) both in clinical settings and in the research context. Our results suggest that socio-demographic factors should be taken into account when assessing HRQOL among adults in Singapore. [ABSTRACT FROM AUTHOR]

The index of capability (ICECAP) was developed using in-depth interviews with 40 older people and comprises five attributes: attachment, security, enjoyment, role and control. This paper explores the construct validity of these five capability attributes. An interview survey was conducted with individuals aged 65 and over located across the UK. Data were analysed in six categories (socio-demographic variables and general well-being, contact with others, health, nature of the locality and environment, social support and participation) using chi-squared tests (for categorical variables) or one-way analysis of variance (for continuous variables). About 315 individuals were interviewed (response rate 66%). Relationships were generally as anticipated with, for example: strong relationships between age and capability and well-being and capability, but no relationships between capability and either sex or social class; strong relationships between physical measures of health and role, enjoyment and control, and between mental health measures and attachment and enjoyment. This study provides some early evidence for the construct validity of the ICECAP measure. Where anticipated relationships were not observed this might in part be explained in that the ICECAP index asks about capability, but the factors with which associations were examined were largely and inevitably measures of function. [ABSTRACT FROM AUTHOR]

The Short Form 36 Health Status Questionnaire (SF-36) has eight scales that can be condensed into two components: physical component summary (PCS) and mental component summary (MCS). This paper investigates: (1) the assumption that PCS and MCS are orthogonal, (2) the applicability of a single model to different condition-specific subgroups, and (3) a reduced five-scale model. We performed a secondary analysis of two large-scale data sets that utilised the SF-36: the Health Survey for England 1996 and the Welsh Health Survey 1998. We used confirmatory factor analysis to compare hypothetical orthogonal and oblique factor models, and exploratory factor analysis to derive data-driven models for condition-specific subgroups. Oblique models gave the best fit to the data and indicated a considerable correlation between PCS and MCS. The loadings of the eight scales on the two component summaries varied significantly by disease condition. The choice of model made an important difference to norm-referenced scores for large minorities, particularly patients with a mental illness or mental–physical comorbidity. We recommend that users of the SF-36 adopt the oblique model for calculating PCS and MCS. An oblique five-scale model provides a more universal factor structure without loss of predictive power or reliability. [ABSTRACT FROM AUTHOR]

The purpose of this paper is to summarize the best evidence regarding the impact of providing patient-reported outcomes (PRO) information to health care professionals in daily clinical practice. Systematic review of randomized clinical trials (Medline, Cochrane Library; reference lists of previous systematic reviews; and requests to authors and experts in the field). Out of 1,861 identified references published between 1978 and 2007, 34 articles corresponding to 28 original studies proved eligible. Most trials (19) were conducted in primary care settings performed in the USA (21) and assessed adult patients (25). Information provided to professionals included generic health status (10), mental health (14), and other (6). Most studies suffered from methodologic limitations, including analysis that did not correspond with the unit of allocation. In most trials, the impact of PRO was limited. Fifteen of 23 studies (65%) measuring process of care observed at least one significant result favoring the intervention, as did eight of 17 (47%) that measured outcomes of care. Methodological concerns limit the strength of inference regarding the impact of providing PRO information to clinicians. Results suggest great heterogeneity of impact; contexts and interventions that will yield important benefits remain to be clearly defined. [ABSTRACT FROM AUTHOR]

Introduction: In order to assess the health outcomes of the South African public sector antiretroviral treatment (ART) programme, it is important to gain a better understanding of the complex relationship between ART and the multidimensional construct quality of life (QoL). Because of the gap between supply and demand, equity issues arise concerning the provisioning of ART.Objective: The aim of this paper is to examine how and to what extent public sector ART is related to the physical and emotional health of people living with HIV/AIDS (PLWHA).Methods: The stratified random sample consisted of 371 AIDS patients on ART or medically certified for ART, but still awaiting treatment. A model of the relationships between patient characteristics (age and gender) and socio-economic position (educational level, income, type of dwelling, number of rooms), ART duration, and physical and emotional QoL was tested using structural equation modelling.Results: Patients with a higher personal income (beta = .19, P < .05) and a larger dwelling (beta = .45, P < .01) were significantly more likely to enter the programme at this early stage. The model showed that the initial months of ART have been associated with significant improvements in the physical QoL (beta = .21, P < .01). Furthermore, patients on ART reported significantly higher levels of emotional well-being than patients awaiting treatment (beta = .10, P < .01). Finally, the results indicate that ART is not only directly associated with emotional QoL, but is also indirectly associated with emotional QoL via the mediating variable physical QoL (beta = .30, P < .01).Conclusions: The study suggests that the poorest of the poor are not the first beneficiaries of the public programme. Most importantly, the present findings demonstrate the positive physical and emotional health outcomes of the first 6 months of ART in the Free State, South Africa. [ABSTRACT FROM AUTHOR]

Health-related quality of life (HRQOL) assessment in children and adolescents with chronic health conditions is increasingly considered as a relevant topic. The aim of the EU-funded DISABKIDS project is to develop, test, and implement European instruments for the assessment of HRQOL of children and adolescents with disabilities and their families. The current paper describes the development and pilot testing of a chronic generic HRQOL measure. Using literature searches, expert consulting and focus groups with children/adolescents and their families, items of the instruments were developed and translated into the respective languages. A pilot test with 360 children and adolescents was conducted. Children and adolescents (8-12, 13-16 years) with different chronic health conditions (asthma, epilepsy, diabetes, arthritis, atopic dermatitis, cerebral palsy, and cystic fibrosis) as well as their families were included. Data were analysed according to predefined psychometric and content criteria. Psychometric analyses resulted in a 56-item chronic generic HRQOL questionnaire with six domains ('Medication', 'Physical', 'Emotion', 'Independence', 'Social Inclusion', 'Social Exclusion') with acceptable internal consistency. [ABSTRACT FROM AUTHOR]

Background: We implemented a comprehensive intervention program targeting general practice staff, that proved successful in optimizing practice organization and clinical decision-making. In this paper, health-related quality of life (HRQL) is investigated as a clinical outcome.Objective: To evaluate the effect of the implementation of an intervention program on the HRQL in patients at high cardiovascular risk.Research Design: Randomized controlled trial. Intervention practices (n = 62) received a comprehensive intervention program (by means of outreach visitors) lasting 21 months. HRQL of patients at high cardiovascular risk was assessed by the MOS 36-Item Short-Form Health Survey (SF-36), at baseline and after intervention. Three patient categories were distinguished: diabetes mellitus, cardiovascular disease and hypertension.Results: HRQL deteriorated in all respondents, but more pronounced in the control group. In diabetes patients the differences between intervention and control group were significant for the Vitality and Mental Health scales, with mean difference in change of 3.93 (95% CI: 1.08-6.78) and 3.71 (95% CI: 0.73-6.68), respectively. Patients with cardiovascular disease had significantly different changes on three scales: physical functioning (3.57, 95% CI: 0.71-6.43), vitality (3.01, 95% CI: 0.72-5.30) and social functioning (3.96, 95% CI: 0.50-7.42). In patients with hypertension, there were no differences between the intervention and control group.Conclusion: Our comprehensive intervention program resulted in changes in HRQL on several domains, particularly in patients with diabetes and cardiovascular disease. [ABSTRACT FROM AUTHOR]

Background: Migraine headaches have been shown to have substantial personal and societal implications. Health-related quality of life (HRQOL) assessments of migraineurs have been used to monitor and evaluate patient- and population-based outcomes, and to evaluate effectiveness and responsiveness to treatment. In this paper, we test a new, even shorter generic health survey, the SF-8 Health Survey (SF-8), an alternate form that uses one question to measure each of the eight SF-36 Health Survey (SF-36) domains, in a sub-sample of migraine sufferers.Methods: Data from 7557 participants surveyed via the Internet and mail were used to document the burden of migraine on HRQOL and to compare the relative burden of migraine with other chronic conditions using the SF-8.Results: Migraineurs' HRQOL is similar to those with congestive heart failure, hypertension and diabetes, and is better than those with depression. Migraine sufferers experience better physical health and worse mental health (MH) than those with osteoarthritis. Results support prior research indicating that the burden of migraine on functional health and well-being is considerable and comparable to other chronic conditions known to have substantial impact on HRQOL.Conclusions: The SF-8 may provide a more practical and efficient method to describe the burden of migraine in population studies. [ABSTRACT FROM AUTHOR]