Showing papers in "Quality of Life Research in 2008"
TL;DR: In this article, a systematic review of the literature published since 1999 on paediatric health-related quality of life (HRQL) in relation to parent-child agreement is presented.
Abstract: To systematically review the literature published since 1999 on paediatric health-related quality of life (HRQL) in relation to parent–child agreement. Literature searches used to identify studies which evaluated parent–child agreement for child HRQL measures. Nineteen studies were identified, including four HRQL instruments. The Pediatric Quality of Life Inventory™ (PedsQL™) was most commonly used. Differences in parent–child agreement were noted between domains for different measures. The impact of child and parent characteristics were not consistently considered; however parents of children in a nonclinical sample tended to report higher child HRQL scores than children themselves, while parents of children with health conditions tended to underestimate child HRQL. Despite increasing numbers of studies considering children’s HRQL, information about variables contributing to parent–child agreement levels remains limited. Authors need to consistently provide evidence for reliability and validity of measures, and design studies to systematically investigate variables that impact on levels of parent–child agreement.
663 citations
TL;DR: Methodological concerns limit the strength of inference regarding the impact of providing PRO information to clinicians, and results suggest great heterogeneity of impact.
Abstract: 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.
642 citations
TL;DR: This classification system of PRO measures, based on a valid integrated conceptual model, should allow the classification of most currently used instruments and may facilitate a more adequate selection and application of these instruments.
Abstract: The umbrella term Patient Reported Outcomes (PRO) has been successfully proposed for instruments measuring perceived health outcomes, but its relationship to current conceptual models remains to be established. Our aim was to develop a classification system for PRO measures based on a valid conceptual model. We reviewed models and classification schemes of health outcomes and integrated them in a common conceptual framework, based on the models by Wilson and Cleary and the International Classification of Functioning (ICF). We developed a cross-classification system based on the minimum common set of consistent concepts identified in previous classifications, and specified categories based on the WHO International Classifications (ICD-10, and ICF). We exemplified the use of the classification system with selected PRO instruments. We identified three guiding concepts: (1) construct (the measurement object); (2) population (based on age, gender, condition, and culture); and (3) measurement model (dimensionality, metric, and adaptability). The application of the system to selected PRO measures demonstrated the feasibility of its use, and showed that most of them actually assess more than one construct. This classification system of PRO measures, based on a valid integrated conceptual model, should allow the classification of most currently used instruments and may facilitate a more adequate selection and application of these instruments.
254 citations
TL;DR: Chewing ability was related to oral-health-related quality of life and general health, possibly reflecting the impact of chewing on food choice and enjoyment of meals and diet, and also indicated the importance of oral health to general well-being.
Abstract: Middle-aged and older adults are retaining teeth and avoiding dentures, which should impact quality of life. The aims of our study were to investigate tooth loss and chewing ability and their association with oral- and general-health-related quality of life and life satisfaction. A random sample of 45- to 54-year-olds from Adelaide, South Australia, was surveyed by self-complete questionnaire in 2004–2005 (n = 879, response rate = 43.8%). Health-related quality of life was measured with the Oral Health Impact Profile 14-item version and EuroQol Visual Analogue Scale instruments and life satisfaction by the Satisfaction with Life Scale. Functional tooth units were recorded at oral examinations performed by calibrated dentists on 709 persons (completion rate = 80.7%). Number of functional teeth was positively associated with chewing ability (β = 0.31, P < 0.01). In multivariate analyses, controlling for number of functional teeth and other explanatory variables spanning dental visit pattern, dental behaviour, socio-demographics and socio-economic status, chewing ability was negatively associated with oral-health-related impacts (β = −0.37, P < 0.01) and positively associated with general health (β = 0.10, P < 0.05) and well-being (β = 0.16, P < 0.01). Chewing ability was related to oral-health-related quality of life and general health, possibly reflecting the impact of chewing on food choice and enjoyment of meals and diet, and also indicated the importance of oral health to general well-being.
182 citations
TL;DR: Results obtained with different preference-based quality-of-life measures in a sample of patients with mild to moderate disease severity are not equivalent and careful selection of instruments for a given study is essential.
Abstract: To compare the EQ-5D, 15D, HUI 2, HUI 3, SF-6D, and QWB-SA in terms of their descriptive statistics, score distribution, agreement and responsiveness in a sample of German rehabilitation inpatients. Patients with musculoskeletal (N = 106), cardiovascular (N = 88), and psychosomatic (N = 70) disorders completed questionnaires at the beginning (baseline) and end (follow-up) of their inpatient treatment. Comparisons addressed the proportion of missing data, distributional properties, agreement, and responsiveness. Intraclass correlation coefficients (ICC), paired t-tests, and standardized response means (SRM) were computed. Mean index scores at baseline ranged from 0.48 (HUI 3; psychosomatic) to 0.86 (15D; cardiovascular). At baseline, ceiling effects across all patient groups ranged from zero (SF-6D; cardiovascular and psychosomatic) to 21.6% (EQ-5D; cardiovascular). ICCs ranged from 0.26 (EQ-5D–QWB-SA; cardiovascular) to 0.80 (HUI 2–HUI 3; musculoskeletal). Substantial differences in responsiveness were observed between measures. Results obtained with different preference-based quality-of-life measures in a sample of patients with mild to moderate disease severity are not equivalent. As differences between measures may have considerable effects in health economic evaluation studies, careful selection of instruments for a given study is essential.
155 citations
TL;DR: Patient-reported measures can help clinicians target interventions that will improve patient outcomes of care, however, there are a number of challenges in using patient-reported outcomes in clinical practice.
Abstract: Background
Patient-reported measures include preferences and reports about care received, health behaviors, and outcomes of care (patient satisfaction and health-related quality of life). These measures are a core aspect of health care, but there is much to be learned about how to use them to improve clinical practice.
148 citations
TL;DR: This study provides some early evidence for the construct validity of the ICECAP measure, which asks about capability but the factors with which associations were examined were largely and inevitably measures of function.
Abstract: BACKGROUND: 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 pape ...
143 citations
TL;DR: Psychosocial, physical, and total QOL were significantly lower for obese when compared to overweight participants, and less physically active children, irrespective of weight status, had significantly lower psychosocial and totalQOL.
Abstract: Purpose
This cross-sectional study aimed to investigate the relationship between health quality of life, physical activity, and overweight status in children aged 8–12 years old.
141 citations
TL;DR: The empty-nest elderly had lower life satisfaction, lower income, poorer relationships with children, less social support, higher prevalence of chronic diseases, and more feelings of depression and loneliness compared to the not-empty-Nest elderly.
Abstract: To estimate the life satisfaction and its predictors between the empty-nest and not-empty-nest elderly. A semi-structured questionnaire including socio-demographic characteristics, physical health, and the Life Satisfaction Index (LSI), UCLA Loneliness Scale (UCLA-LS), and Geriatric Depression Scale (GDS) was administered to 275 empty-nest and 315 not-empty-nest rural elderly in a Chinese county. Linear regression analysis was used to examine the predictors of LSI score. The empty-nest elderly had lower life satisfaction, lower income, poorer relationships with children, less social support, higher prevalence of chronic diseases, and more feelings of depression and loneliness compared to the not-empty-nest elderly. “Empty-nest status” was negatively related with life satisfaction. Depression was the strongest predictor of life satisfaction in both groups. The second strongest predictor was loneliness among the empty-nest group, while it was chronic diseases among the not-empty-nest group. Marital status and income were correlated with life satisfaction only among the empty-nest elderly. The empty-nest elderly were likely to have mental health problems and to feel unsatisfied with their life. These findings also emphasize the importance of mental health as the determinant of life satisfaction among the empty-nest elderly.
136 citations
TL;DR: Coping (particularly acceptance/positive reinterpretation and religious coping) was not only related to meaning in life, but also to increased meaning over time, adding to accumulating evidence that life meaning is important in the context of living with a chronic, life-threatening illness.
Abstract: Objective
The present study examined (1) whether particular coping strategies used to deal with congestive heart failure (CHF) are related to meaning in life across time, and (2) whether meaning in life mediates the effect of coping on health-related quality of life.
131 citations
TL;DR: The FACT-G and its subscales demonstrated acceptable reliability evidence across observed studies, without substantial variability due to scale or demographic characteristics.
Abstract: The aim of this study was to conduct a reliability generalization of the Functional Assessment of Cancer Therapy-General (FACT-G) and its subscales to examine variation in score reliability across all published studies. We reviewed 344 publications based on predetermined criteria. About 78 published studies reported Cronbach’s Alpha reliability coefficients from their study in which data were collected. Sample size based weights were applied, and studies were coded on several scale and demographic characteristics. Using independent samples t tests, we examined associations between study characteristics and internal consistency variability. Average FACT-G score reliability was .88 (subscales ranged between .71–.83). Three variables produced small, statistically significant (P ≤ .05) eta squared effects (ranging between .06–.21) due to different sources of variation in the FACT-G and subscales: ethnicity, cancer type, and study type-all of which appeared to be related to disproportionate representation of studies with the majority including Caucasian samples, mixed cancer samples, and validation type studies. The FACT-G and its subscales demonstrated acceptable reliability evidence across observed studies, without substantial variability due to scale or demographic characteristics.
TL;DR: Obesity significantly exacerbates the deleterious association between diabetes, hyperlipidemia, and hypertension, and health function, health perception, and preference-based scores in the United States.
Abstract: Objective
The prevalence of obesity and associated cardiometabolic risk factors such as diabetes, hyperlipidemia and hypertension is increasing significantly for all demographic groups.
TL;DR: The findings suggest that the PedsQL™ Multidimensional Fatigue Scale may be utilized in the evaluation of fatigue for a broad age range.
Abstract: The PedsQL™ (Pediatric Quality of Life Inventory™) is a modular instrument designed to measure health-related quality of life (HRQOL) and disease-specific symptoms in children and adolescents ages 2–18. The PedsQL™ Multidimensional Fatigue Scale was designed as a generic symptom-specific instrument to measure fatigue in pediatric patients ages 2–18. Since a sizeable number of pediatric patients prefer to remain with their pediatric providers after age 18, the objective of the present study was to determine the feasibility, reliability, and validity of the PedsQL™ Multidimensional Fatigue Scale in young adults. The 18-item PedsQL™ Multidimensional Fatigue Scale (General Fatigue, Sleep/Rest Fatigue, and Cognitive Fatigue domains), the PedsQL™ 4.0 Generic Core Scales Young Adult Version, and the SF-8™ Health Survey were completed by 423 university students ages 18–25. The PedsQL™ Multidimensional Fatigue Scale evidenced minimal missing responses, achieved excellent reliability for the Total Scale Score (α = 0.90), distinguished between healthy young adults and young adults with chronic health conditions, was significantly correlated with the relevant PedsQL™ 4.0 Generic Core Scales and the SF-8™ standardized scores, and demonstrated a factor-derived structure largely consistent with the a priori conceptual model. The results demonstrate the measurement properties of the PedsQL™ Multidimensional Fatigue Scale in a convenience sample of young adult university students. The findings suggest that the PedsQL™ Multidimensional Fatigue Scale may be utilized in the evaluation of fatigue for a broad age range.
TL;DR: The PCQLI has patient and parent-proxy forms, has wide age range, and discriminates between CHD subgroups, and has excellent IC and correlate well with each other and the TS.
Abstract: Mortality after surgery for congenital heart disease (CHD) has decreased. Quality of life (QOL) assessment in survivors has become increasingly important. The purpose of this project was to create the Pediatric Cardiac Quality of Life Inventory (PCQLI). Items were generated through nominal groups of patients, parents, and providers. The pilot PCQLI was completed by children (age 8–12), adolescents (age 13–18), and their parents at three cardiology clinics. Item reduction was performed through analysis of items, principal components, internal consistency (IC), and patterns of correlation. A total of 655 patient–parent pairs completed the pilot PCQLI. Principal components identified included: impact of disease (ID); psychosocial impact (PI); and emotional environment (EE). After item reduction ID and PI had excellent IC (ID = 0.88–0.91; PI = 0.78–0.85) and correlated highly with each other (0.81–0.90) and with the total score (TS) (ID = 0.95–0.96; PI = 0.87–0.93). EE was not correlated with ID, PI, or TS and was removed from the final forms. Two-ventricle CHD patients had a higher TS than single-ventricle CHD patients across all forms (P < 0.001). The PCQLI has patient and parent-proxy forms, has wide age range, and discriminates between CHD subgroups. The ID and PI subscales of the PCQLI have excellent IC and correlate well with each other and the TS.
TL;DR: Exercise training is an inexpensive and efficacious strategy for improving QoL in HIV+ African subjects, which may improve HAART adherence and treatment initiatives in resource-limited areas of sub-Saharan Africa.
Abstract: Objective
Our objective was to examine the effects of exercise training (EXS) on quality of life (QoL) in highly active antiretroviral therapy (HAART)-treated HIV-positive (HIV+) subjects with body fat redistribution (BFR) in Rwanda.
TL;DR: Chinese WOMAC was well accepted and demonstrated acceptable psychometric properties in Singaporean patients with severe knee OA.
Abstract: Objective
Our aim was to cross-culturally validate Chinese Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) in patients with knee osteoarthritis (OA) scheduled for total knee replacement in Singapore.
TL;DR: Findings support the lower ratings of HRQOL by smokers, but quitting alone, after an average of 21 years of smoking, did not improveHRQOL.
Abstract: Purpose
To examine the relationship between smoking and health-related quality of life (HRQOL) and the impact of quitting smoking on changes in HRQOL among women in the two Nurses’ Health Study (NHS) cohorts (n = 158,736) who were 29 to 71 years of age in 1992/1993 when they reported data on smoking status and completed the Short Form-36® version 1 (SF-36®).
TL;DR: The nonparametric monotone homogeneity model is highly suited for data analysis in a health-related quality-of-life context, and the parametric graded response model may add interesting features to measurement provided the model fits the data well.
Abstract: Background
This study investigates the usefulness of the nonparametric monotone homogeneity model for evaluating and constructing Health-Related Quality-of-Life Scales consisting of polytomous items, and compares it to the often-used parametric graded response model.
TL;DR: The process of Cognitive Interviewing, a technique increasingly used to obtain respondent feedback on potential items during questionnaire development, is described and the methods used to judge CI for the present item set may be useful for future investigations.
Abstract: Objectives
Cognitive Interviewing (CI) is a technique increasingly used to obtain respondent feedback on potential items during questionnaire development. No standard guidelines exist by which to incorporate CI feedback in deciding to retain, revise, or eliminate potential items. We used CI in developing fatigue items for the National Institutes of Health (NIH) Patient-Reported Outcomes Measurement Information System (PROMIS) Roadmap initiative. Our aims were to describe the CI process, formally evaluate the utility of decisions made on the basis of CI, and offer suggestions for future research.
TL;DR: Five unique and different challenges that may confront youth with asthma as compared to general population youth are identified and confirm unique experiences for children with asthma across a broad range of health domains and enhance the breadth of all domains when creating an item bank.
Abstract: To understand differences in perceptions of patient-reported outcome domains between children with asthma and children from the general population We used this information in the development of patient-reported outcome items for the Patient-Reported Outcomes Measurement Information System Pediatrics project We conducted focus groups composed of ethnically, racially, and geographically diverse youth (8–12, 13–17 years) from the general population and youth with asthma We performed content analysis to identify important themes We identified five unique and different challenges that may confront youth with asthma as compared to general population youth: (1) They experience more difficulties when participating in physical activities; (2) They may experience anxiety about having an asthma attack at anytime and anywhere; (3) They may experience sleep disturbances and fatigue secondary to their asthma symptoms; (4) Their health condition has a greater effect on their emotional well-being and interpersonal relationships; and (5) Youth with asthma report that asthma often leaves them with insufficient energy to complete their school activities, especially physical activities The results confirm unique experiences for children with asthma across a broad range of health domains and enhance the breadth of all domains when creating an item bank
TL;DR: SPD is associated with decreased HRQOL and presence of chronic medical conditions and Persons with chronic diseases may benefit from targeted mental health screening and programs that employ treatment approaches that jointly manage physical and mental health and provide improved links and access to services.
Abstract: Determine the prevalence of serious psychological distress (SPD) among adults with and without chronic medical conditions and examine the association between SPD and health-related quality of life (HRQOL). Cross-sectional data from the 2005 Los Angeles County Health Survey were used to estimate prevalence of SPD. The association between SPD and HRQOL was evaluated using logistic regression and analysis of covariance, adjusting for sociodemographic variables and number of chronic conditions. SPD was significantly associated with younger age, lower income, being unemployed or disabled, being unmarried, fair or poor health, and having one or more chronic conditions. Adults with three or more chronic conditions were six times as likely to have SPD as those with no conditions. Adults with SPD reported significantly more unhealthy days (mental and physical) and activity limitation days than adults without SPD. The adjusted mean number of unhealthy days was highest among adults with SPD (23.3), followed by adults with depression (14.1), and diabetes (10.6). SPD is associated with decreased HRQOL and presence of chronic medical conditions. Mental health should be routinely assessed when addressing health needs of individuals and communities. Persons with chronic diseases may benefit from targeted mental health screening and programs that employ treatment approaches that jointly manage physical and mental health and provide improved links and access to services.
TL;DR: In this representative, population-based sample of children and adolescents, moderate decrements in HRQoL were observed after 3 years, and changes were particularly important among girls and in relation to pubertal development.
Abstract: To assess changes in health-related quality of life (HRQoL) in children and adolescents over a 3-year period and to examine factors associated with change. A representative sample of Spanish children and adolescents aged 8–18 years and their parents completed the KIDSCREEN-52 questionnaire at baseline and again after 3 years. Data were also collected on gender, pubertal development (PD), and family socio-economic status (SES). Change in HRQOL over time was evaluated using effect sizes (ES). Generalized estimating equations (GEE) were used to analyze associations among changes in KIDSCREEN scores, socio-demographic factors, and pubertal development. Response rate at follow-up was 54% (n = 454). Overall, HRQoL worsened in eight out of the ten KIDSCREEN dimensions, with ES ranging from −0.10 (Moods and Emotions) to −0.34 (Psychological Well-being). The decrease was most marked in the intermediate age group (13–17 years of age at follow-up) and in girls. In the GEE models, pubertal development more strongly impacted changes in girls than in boys. In this representative, population-based sample of children and adolescents, moderate decrements in HRQoL were observed after 3 years. Changes were particularly important among girls and in relation to pubertal development. These results could provide useful reference data for other longitudinal studies in population sub-groups.
TL;DR: For elbow surgery, the 12-item three-scale OES is highly responsive to 6-month post-operative outcomes, with its performance being generally better than that of the 30-item one-scale DASH.
Abstract: To assess the responsiveness and minimal change for the Oxford Elbow Score (OES) using anchor- and distribution-based approaches. A prospective observational study of 104 patients undergoing elbow surgery at a specialist orthopaedic hospital was carried out. Patients completed the OES and the Disabilities of the Arm, Shoulder and Hand (DASH) questionnaires (both scored on a 0 to 100 scale) pre- and 6 months post-surgery. Transition items (used as anchors) assessed perceived changes following surgery. Indicators of responsiveness were the effect size; the anchor-based minimal clinically important difference (MCID) and best cut-point on the receiver operator characteristic (ROC) curve; and the distribution-based minimal detectable change (MDC). The three elbow-specific OES scales (Function, Pain, Social-Psychological) produced generally larger effect sizes (0.79, 1.14 and 1.18, respectively) than the upper-limb-specific DASH scale (0.76). Clear associations were observed between transition items and all OES and DASH scores (all r > |0.35|). The MCIDs for the OES Function scale and the DASH were similar (≈10), but were larger for the OES Pain and Social-Psychological scales (≈18), reflecting their lower (i.e. poorer) baseline scores and larger effect sizes. The MCIDs were, however, only consistently larger than the MDCs for the OES Pain domain. The OES Function scale and the DASH performed similarly on ROC analysis, but with the OES Pain and Social-Psychological scales demonstrating superior efficiency. For elbow surgery, the 12-item three-scale OES is highly responsive to 6-month post-operative outcomes, with its performance being generally better than that of the 30-item one-scale DASH. Study estimates of minimal change for the OES may be useful for informing sample size calculations and interpreting outcomes in future clinical trials.
TL;DR: A prespecified conceptual model appears comprehensive but is being further refined to more appropriately distinguish between responsibilities versus discretionary activities, and situate the outcome of satisfaction as it relates to impairment in social and other domains of health.
Abstract: Our aim was to assess the content validity of the Patient-Reported Outcomes Measurement Information System (PROMIS) social health item banks by comparing a prespecified conceptual model with concepts that focus-group participants identified as important social-health-related outcomes. These data will inform the process of improving health-related quality-of-life measures. Twenty-five patients with a range of social limitations due to chronic health conditions were recruited at two sites; four focus groups were conducted. Raters independently classified participants’ statements using a hierarchical, nested schema that included health-related outcomes, role performance, role satisfaction, family/friends, work, and leisure. Key themes that emerged were fulfilling both family and work responsibilities and the distinction between activities done out of responsibility versus enjoyment. Although focus-group participants identified volunteerism and pet ownership as important social-health-related concepts, these were not in our original conceptual model. The concept of satisfaction was often found to overlap with the concept of performance. Our conceptual model appears comprehensive but is being further refined to more appropriately (a) distinguish between responsibilities versus discretionary activities, and (b) situate the outcome of satisfaction as it relates to impairment in social and other domains of health.
TL;DR: The PSP suggested scale reliability and validity among outpatients and Socially useful activities and personal and social relationships were the strongest indicators, suggesting separate aspects of functioning.
Abstract: Symptoms and cognitive impairments of schizophrenia affect social integration and functioning. Accurate measurement is essential in evaluating treatment needs and outcomes. The Personal and Social Performance scale (PSP; Morosini et al. Acta Psychiatrica Scandinavica 101(4):323–329, 2000) is a clinical tool assessing social functioning in rehabilitation settings. One hundred and twenty-nine patient/informant dyads at eight US sites participated in this study. Patients were at least 18 years old, have had schizophrenia/schizoaffective disorder for one year or more, and were currently residing in the community. Informants were at least 21 years old, cared for the patient for at least one month, and had contact at least twice weekly. The PSP, Personal Evaluation of Transitions in Treatment (PETiT), Positive and Negative Syndrome Scale (PANSS), Clinical Global Impressions—Severity (CGI-S), and Quality of Life Scale (QLS) tools were completed. Analyses focused on descriptive statistics, item characteristics, reliability, and validity. Patients were community-dwelling outpatients without severe difficulties. The PSP scores were well correlated with each other and related measures. Socially useful activities and personal and social relationships were the strongest indicators, suggesting separate aspects of functioning. Internal consistency reliability was adequate (α = 0.76). The PSP was sensitive to differences in social functioning by clinical severity. The PSP suggested scale reliability and validity among outpatients. Future examination should expand validity analyses and evaluate responsiveness.
TL;DR: Taiwanese adults had a high prevalence of insomnia and insomnia status predicted poor psychological well-being even after controlling for sociodemographic factors and health status, and insomnia contributed at least partially to an individual’s psychologicalWell-being.
Abstract: Objectives
This study examined the national age- and sex-specific prevalence rates of insomnia and excessive daytime sleepiness (EDS), the associations of insomnia symptoms with daytime consequences, and the impact of insomnia on EDS and psychological well-being.
TL;DR: Overall, the AQL-5D discriminated across all levels of asthma control, and differentiated between the highest and lowest levels of control but could not discriminate between the moderate levels.
Abstract: Objective
A goal of asthma management is to improve the patient’s health-related quality of life (HRQL). However, it is unclear whether HRQL instruments can discriminate across asthma control measures. The objective of this study was to evaluate the validity of generic and condition-specific preference-based instruments, in terms of their ability to distinguish asthma control.
TL;DR: Because psychopathology seems to have the greatest impact on the QoL, there is a need to develop community psychosocial treatment to reduce these symptoms and to support patients in the early phase of the disease.
Abstract: This study involved a naturalistic, prospective project assessing objective and subjective dimensions of quality of life (QoL) and the range of its putative determinants in first-episode schizophrenia. Seventy-four patients, mean age 24.7 years, participated in the study. The patients were assessed 1 month following the first hospitalisation (Time 1), 12 months later (Time 2), and 4–6 years after Time 1 (Time 3). The Social Functioning Scale and World Health Organisation Quality of Life-BREF (WHOQOL-BREF) were applied to evaluate objective and subjective QoL, respectively. The Positive and Negative Syndrome Scale was used to examine psychopathological status, and the Global Assessment Scale was applied to evaluate social adjustment prior to hospitalisation. The objective and subjective QoL was relatively low at Time 1. Over time, the objective QoL improved in three domains, decreased in one domain, and remained stable in three domains. The subjective QoL did not change. The most important predictors of both dimensions of QoL were psychopathology and duration of untreated psychosis. Because psychopathology seems to have the greatest impact on the QoL, there is a need to develop community psychosocial treatment to reduce these symptoms and to support patients in the early phase of the disease.
TL;DR: Psychometric tools specifically designed to measure vision-related quality of life are well equipped and validated to measure QoL in AMD, and most tools that were identified have been validated for the use in AMD patients.
Abstract: Age-related macular degeneration (AMD) has a considerable impact on older adults’ independence and autonomy. Recently, patient reported outcomes (PROs) such as QoL have been met with increasing interest by the scientific community, healthcare payers and planners. Against this background, the multitude of psychometric tools used to measure QoL in AMD was reviewed. A search of the literature from 1990 onwards yielded 355 results, out of which 58 publications were included in the review. Data regarding design, validation and extent of utilization were obtained where available. The National Eye Institute–Visual Function Questionnaire (NEI VFQ-25-item) was found to be the most often used (29% of studies) and best validated psychometric tool, followed by the Visual Function Questionnaire (VF-14; 17%), and the Impact of Vision Impairment Profile (IVI; 9%). Most tools that were identified have been validated for the use in AMD patients. Psychometric tools specifically designed to measure vision-related quality of life are well equipped and validated to measure QoL in AMD. More recent developments such as the Macular Disease-dependent Quality of Life (MacDQoL) questionnaire might be able to depict dimensions of vision-related QoL in greater depth. Future studies should endeavour to use a suggested standard when gathering data on vision related QoL, allowing for international comparisons.
TL;DR: Oblique models gave the best fit to the data and indicated a considerable correlation between PCS and MCS, and an oblique five-scale model provides a more universal factor structure without loss of predictive power or reliability.
Abstract: 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.