Rasch analysis in the development of a simplified version of the national eye institute visual-function questionnaire-25 for utility estimation

Purpose

Preference-based health measures value how people feel about the desirability of a health state. Generic measures may not effectively capture the impact of vision loss from ocular diseases. Disease-targeted measures could address this limitation. This study developed a vision-targeted health state classification system based on the National Eye Institute Visual Function Questionnaire-25 (NEI VFQ-25).

Methods

Secondary analysis of NEI VFQ-25 data from studies of patients with central (n?=?932)- and peripheral-vision loss (n?=?2,451) were used to develop a health state classification system. Classical test theory and Rasch analyses were used to identify a smaller set of NEI VFQ-25 items suitable for the central- and peripheral-vision-loss groups.

Results

Rasch analysis of the NEI VFQ-25 items using the peripheral vision?Closs data indicated that 11 items fit a unidimensional model, while 14 NEI VFQ-25 items fit using the central-vision-loss data. Combining peripheral-vision-loss data and central-vision-loss data resulted in 9 items fitting a unidimensional model. Six items covering near vision, distance vision, social vision, role difficulties, vision dependency, and vision-related mental health were selected for the health-state classification.

Conclusions

The derived health-state classification system covers relevant domains of vision-related functioning and well-being.     

Using three legacy measures to develop a health-related quality of life tool for young adult survivors of childhood cancer

Background

Little attention has been paid to selecting and developing health-related quality of life (HRQOL) measurement tools for young adult survivors of childhood cancer (YASCC). The primary purpose of this study was to develop a HRQOL tool for YASCC based on three legacy instruments.

Methods

Data collected from 151 YASCC were analyzed. HRQOL was measured using the Medical Outcomes Study SF-36, Quality of Life in Adult Cancer Survivors, and Quality of Life-Cancer Survivor. We used the following stages to develop our HRQOL tool: mapping items from three instruments into a common HRQOL construct, checking dimensionality using confirmatory factor analyses (CFA), and equating items using Rasch modeling.

Results

We assigned 123 items to a HRQOL construct comprised of six generic and eight survivor-specific domains. CFA retained 107 items that meet the assumptions of unidimensionality and local independence. Rasch analysis retained 68 items that satisfied the indices of information-weighted/outlier-sensitive fit statistic mean square. However, items in most domains possess relatively easy measurement properties, whereas YASCC??s underlying HRQOL was on the middle to higher levels.

Conclusions

Psychometric properties of the established tool for measuring HRQOL of YASCC were not satisfied. Future studies need to refine this tool, especially adding more challenging items.     

Conceptualizing global health-related quality of life in bladder cancer

Purpose

Patients’ values for health outcomes are central to treatment decisions in bladder cancer (BCa). An instrument incorporating the expressed preferences of BCa patients, as measured by utility, can inform clinical guidelines, resource allocation and policy decisions. Developing this instrument requires a formal conceptual framework summarizing the important domains comprising global health-related quality of life (HRQOL) in BCa.

Methods

We performed a systematic literature search on the HRQOL effects of BCa and its treatments to generate initial items in Medline, Embase, CINAHL and PsychInfo up to January 2013. Thematic synthesis was used to group related items into overarching themes (domains) and create a provisional conceptual framework. In focus groups, 12 BCa experts and 47 BCa patients with diverse clinical histories generated further items to inform the final conceptual framework.

Results

We retrieved 1,275 citations and reviewed 170 full-text publications. One hundred and sixty-nine items were extracted into 12 domains. Study investigators used the findings from the focus groups to confirm the domains and condense the list to 83 clinically important items. Functional limitations in work, travel, social interaction and sleep lowered HRQOL in many domains. The final conceptual framework included BCa-specific (urinary, sexual, bowel, body image) and generic domains (pain, vigor, social, psychological, sleep, functional, family relationship, medical care relationship).

Conclusions

A conceptual framework including 12 domains can serve as the foundation for the development of an instruments measuring global HRQOL in BCa and in particular, one that can measure patient preferences and generate utilities.     

Measuring the impact of cataract surgery on generic and vision-specific quality of life

Purpose

Cataracts are the leading cause of blindness worldwide and cause visual impairment for millions of adults in the United States. We compared the sensitivity of a vision-specific health-related quality of life (HRQOL) measure to that of multiple generic measures of HRQOL before and at 2 time points after cataract surgery.

Methods

Participants completed 1 vision-specific and 5 generic quality of life measures before cataract surgery, and again 1 and 6 months after surgery. Random effects modeling was used to measure changes over the three assessment points.

Results

The NEI-VFQ25 total score and all 11 subscales showed significant improvements during the first interval (baseline and 1 month). During the second interval (1–6 months post-surgery), significant improvements were observed on the total score and 5 of 11 NEI-VFQ25 subscales. There were significant increases in HRQOL during the first interval on some preference-based generic HRQOL measures, though changes during the second interval were mostly non-significant. None of the SF-36v2? or SF6D scales changed significantly between any of the assessment periods.

Conclusions

The NEI-VFQ25 was sensitive to changes in vision-specific domains of QOL. Some preference-based generic HRQOL measures were also sensitive to change and showed convergence with the NEI-VFQ25, but the effects were small. The SF-36v2? and SF-6D did not change in a similar manner, possibly reflecting a lack of vision-related content. Studies seeking to document both the vision-specific and generic HRQOL improvements of cataract surgery should consider these results when selecting measures.     

Reliability and validity of the Cystic Fibrosis Questionnaire-Revised for children and parents in Turkey: cross-sectional study

Purpose

The purpose of study was to translate Cystic Fibrosis Questionnaire-Revised (CFQ-R) into Turkish for children with cystic fibrosis (CF) and evaluate its reliability and validity. This is the first CF-specific health-related quality of life (HRQOL) measure validated in a Muslim country.

Methods

Fifty-one children aged 6–13 years treated at four centers in Turkey and 30 parents participated in this cross-sectional study. Demographic characteristics and disease severity parameters were recorded for all participants. All participants completed the parent or child versions of CFQ-R and KINDL questionnaires at enrollment. Reliability and construct validity analysis were carried out.

Results

Both children and parents endorsed a range of responses, with no evidence of floor or ceiling effects. Item-to-total correlations indicated that most items were more highly correlated with their intended scale than competing scales. Good internal consistency was found for majority of child and parent scales. CFQ-R scales correlated significantly with clinical indices of disease severity. Good evidence of convergent validity with a generic HRQOL scale was found.

Conclusion

Turkish versions of CFQ-R Child and Parent instruments have demonstrated adequate reliability and validity and can be utilized in clinical trials or integrated into clinical evaluation and follow-up of Turkish children with CF.     

Psychometric evaluation and predictive validity of Ryff's psychological well-being items in a UK birth cohort sample of women

Background

Investigations of the structure of psychological well-being items are useful for advancing knowledge of what dimensions define psychological well-being in practice. Ryff has proposed a multidimensional model of psychological well-being and her questionnaire items are widely used but their latent structure and factorial validity remains contentious.

Methods

We applied latent variable models for factor analysis of ordinal/categorical data to a 42-item version of Ryff's psychological well-being scales administered to women aged 52 in a UK birth cohort study (n = 1,179). Construct (predictive) validity was examined against a measure of mental health recorded one year later.

Results

Inter-factor correlations among four of the first-order psychological well-being constructs were sufficiently high (> 0.80) to warrant a parsimonious representation as a second-order general well-being dimension. Method factors for questions reflecting positive and negative item content, orthogonal to the construct factors and assumed independent of each other, improved model fit by removing nuisance variance. Predictive validity correlations between psychological well-being and a multidimensional measure of psychological distress were dominated by the contribution of environmental mastery, in keeping with earlier findings from cross-sectional studies that have correlated well-being and severity of depression.

Conclusion

Our preferred model included a single second-order factor, loaded by four of the six first-order factors, two method factors, and two more distinct first-order factors. Psychological well-being is negatively associated with dimensions of mental health. Further investigation of precision of measurement across the health continuum is required.     

Assessing psychological well-being: self-report instruments for the NIH Toolbox

Objective

Psychological well-being (PWB) has a significant relationship with physical and mental health. As a part of the NIH Toolbox for the Assessment of Neurological and Behavioral Function, we developed self-report item banks and short forms to assess PWB.

Study design and setting

Expert feedback and literature review informed the selection of PWB concepts and the development of item pools for positive affect, life satisfaction, and meaning and purpose. Items were tested with a community-dwelling US Internet panel sample of adults aged 18 and above (N = 552). Classical and item response theory (IRT) approaches were used to evaluate unidimensionality, fit of items to the overall measure, and calibrations of those items, including differential item function (DIF).

Results

IRT-calibrated item banks were produced for positive affect (34 items), life satisfaction (16 items), and meaning and purpose (18 items). Their psychometric properties were supported based on the results of factor analysis, fit statistics, and DIF evaluation. All banks measured the concepts precisely (reliability ≥0.90) for more than 98 % of participants.

Conclusion

These adult scales and item banks for PWB provide the flexibility, efficiency, and precision necessary to promote future epidemiological, observational, and intervention research on the relationship of PWB with physical and mental health.     

Development of the Healthy Pathways Child-Report Scales

Purpose

The Child Health and Illness Profile (CHIP) has separate child (6–11 years) and adolescent (12–21 years) editions that measure youth’s self-assessed health, illness, and well-being. The purpose of this study was to revise the CHIP by combining the two editions to create the Healthy Pathways Child-Report Scales.

Methods

We modified the original CHIP domains of Comfort, Risk Avoidance, Satisfaction, and Resilience to reflect advances in child health conceptualization. Classical test and item response theory psychometric analyses were conducted using data collected from 2,095 children (49% boys, 80% White, 17% African-American, 3% Hispanic, Age: M = 10.6, SD = 1.0) in grades 4–6 at 34 schools.

Results

After minor revisions, 16 of the 17 scales were found to measure unidimensional self-assessed health, illness, and well-being constructs comprehensively, but with a minimal number of items. Scales were unbiased by age, gender, survey modality, and geographic location. Construct validity was demonstrated by the instrument’s capacity to differentiate among children with and without chronic illnesses and to detect expected age and gender differences.

Conclusions

The Healthy Pathways Child-Report Scales may be used to reliably and accurately assess unidimensional aspects of health, illness, and well-being in clinical and population-based research studies involving youth in transition from childhood to adolescence.     

Development of the Healthy Pathways Parent-Report Scales

Purpose

To describe the development of the Healthy Pathways Parent-Report Scales, measures of health, illness, well-being, and achievement among youth in middle childhood and adolescence.

Methods

The Healthy Pathways Scales were derived from the Child Health and Illness Profile (CHIP) instruments. The CHIP domains of Comfort, Risk Avoidance, Satisfaction, and Resilience were modified to reflect advances in child health conceptualization. Classical test and modern psychometric analyses were conducted using data collected from 1,527 parents of children aged 9?C14?years. Intra-class correlation and differential item functioning analyses were used to evaluate the extent of child?Cparent agreement on the Healthy Pathways Scales.

Results

After minor revisions, 11 of the 12 scales were found to measure unidimensional parent-assessed outcomes comprehensively (full range of the latent trait) and efficiently (a minimal number of items). Scales were unbiased by age, gender, and geographic location. The construct validity of the scales was supported by their capacity to differentiate children with and without chronic illnesses and to detect expected age and gender differences. Child?Cparent agreement was poor to moderate at both the scale and item levels.

Conclusions

The Healthy Pathways Parent-Report Scales may be used to reliably, accurately, and efficiently assess unidimensional aspects of health, illness, well-being, and achievement in clinical and population-based research studies involving youth in middle childhood and adolescence.     

Comparison of the NEI-VFQ and OSDI questionnaires in patients with Sjögren's syndrome-related dry eye

Background

To examine the associations between vision-targeted health-related quality of life (VT-HRQ) and ocular surface parameters in patients with Sjögren's syndrome, a systemic autoimmune disease characterized by dry eye and dry mouth.

Methods

Forty-two patients fulfilling European / American diagnostic criteria for Sjögren's syndrome underwent Schirmer testing without anesthesia, ocular surface vital dye staining; and measurement of tear film breakup time (TBUT). Subjects were administered the Ocular Surface Disease Index (OSDI) and the 25-item National Eye Institute Vision Functioning Questionnaire (NEI-VFQ). Main outcome measures included ocular surface parameters, OSDI subscales describing ocular discomfort (OSDI-symptoms), vision-related function (OSDI-function), and environmental triggers, and NEI-VFQ subscales.

Results

Participants (aged 31–81 y; 95% female) all had moderate to severe dry eye. Associations of OSDI subscales with the ocular parameters were modest (Spearman r (ρ) < 0.22) and not statistically significant. Associations of NEI-VFQ subscales with the ocular parameters reached borderline significance for the near vision subscale with TBUT (ρ = 0.32, p = .05) and for the distance vision subscale with van Bijsterveld score (ρ = 0.33, p = .04). The strongest associations of the two questionnaires were for: ocular pain and mental function with OSDI-symptoms (ρ = 0.60 and 0.45, respectively); and general vision, ocular pain, mental function, role function, and driving with OSDI-function (ρ = 0.60, 0.50, 0.61, 0.64, 0.57, and 0.67, respectively).

Conclusions

Associations between conventional objective measures of dry eye and VT-HRQ were modest. The generic NEI-VFQ was similar to the disease-specific OSDI in its ability to measure the impact of Sjögren's syndrome-related dry eye on VT-HRQ.

     

Quality of life among patients after bilateral prophylactic mastectomy: a systematic review of patient-reported outcomes

Purpose

Bilateral prophylactic mastectomy (BPM) is effective in reducing the risk of breast cancer in women with a well-defined family history of breast cancer or in women with BRCA 1 or 2 mutations. Evaluating patient-reported outcomes following BPM are thus essential for evaluating success of BPM from patient’s perspective. Our systematic review aimed to: (1) identify studies describing health-related quality of life (HRQOL) in patients following BPM with or without reconstruction; (2) assess the effect of BPM with or without reconstruction on HRQOL; and (3) identify predictors of HRQOL post-BPM.

Methods

We performed a systematic review of literature using the PRISMA guidelines. PubMed, Embase, PsycINFO, Web of Science, Scopus and Cochrane databases were searched.

Results

The initial search resulted in 1082 studies; 22 of these studies fulfilled our inclusion criteria. Post-BPM, patients are satisfied with the outcomes and report high psychosocial well-being and positive body image. Sexual well-being and somatosensory function are most negatively affected. Vulnerability, psychological distress and preoperative cancer distress are significant negative predictors of quality of life and body image post-BPM.

Conclusion

There is a paucity of high-quality data on outcomes of different HRQOL domains post-BPM. Future studies should strive to use validated and breast-specific PRO instruments for measuring HRQOL. This will facilitate shared decision-making by enabling surgeons to provide evidence-based answers to women contemplating BPM.

     

Exposure to traumatic events and health-related quality of life in preschool-aged children

Purpose

To examine the association of lifetime exposure to traumatic events with health-related quality of life (HRQOL) and psychosocial health in children aged 3 through 5 years.

Methods

This study is a community-based, cross-sectional survey of 170 children and their parents. Traumatic events were assessed by the Traumatic Events Screening Inventory—Parent Report Revised using criteria for potentially traumatic events in young childhood outlined by the Zero to Three working group. HRQOL of young children was measured using the 97-item Infant/Toddler Quality of Life Questionnaire, and psychosocial health was measured using the Child Behavior Checklist 1.5–5.

Results

One hundred and twenty-three (72 %) of children had experienced at least one type of trauma event. Children who had been exposed to 1–3 types of trauma and those exposed to 4 or more types of trauma had significantly worse HRQOL and psychosocial health than children not exposed to trauma. Significant effect sizes between children exposed to low levels or high levels of traumatic events and children not exposed to trauma ranged from small to large.

Conclusions

Exposure to traumatic events in early childhood is associated with less positive HRQOL and psychosocial health. Cumulative trauma exposure led to significant effects in outcome variables in this population. Interventions to decrease trauma exposure and to reduce significant stress in early childhood associated with exposure to trauma may be appropriate strategies for preventing negative health conditions throughout the life span.     

The effectiveness of psychosocial interventions designed to improve health-related quality of life (HRQOL) amongst asthmatic children and their families: a systematic review

Purpose

Asthmatic children are at risk of compromised health-related quality of life (HRQOL) compared with their healthy peers. This systematic review reports the range and effectiveness of psychosocial interventions designed to improve HRQOL amongst asthmatic children, adolescents, and their families.

Method

Data sources included The Cochrane Airways Group Trials Register of trials, PubMed database, and reference lists from review articles.

Results

Eighteen studies of psychosocial interventions were identified. Interventions were designed to improve HRQOL amongst a range of psychosocial, health care, school-related and clinical outcomes, and were delivered in numerous settings and formats. Four studies reported that interventions were effective for significant improvements in child overall HRQOL scores. These include asthma education (n?=?2), asthma education plus problem solving (n?=?1), and art therapy (n?=?1).

Conclusions

Most interventions focussed on the delivery of asthma education to children, with the purpose of improving knowledge about asthma and disease management. There is limited evidence to suggest that interventions currently available are effective for significantly improving HRQOL amongst asthmatic children, adolescents, and their families. Most interventions lacked a theoretical basis and did not focus on family functioning variables. Multi-component interventions that incorporate asthma education along with strategies to assist families with implementing behaviour change towards improved asthma management are required. Future interventions should also attempt to address the wider context of family functioning likely to contribute to the family??s ability to engage in successful asthma management in order to improve HRQOL.     

Psychosocial working conditions and psychological well-being among employees in 34 European countries

Purpose

The aim of this study was to explore the associations between psychosocial working conditions and psychological well-being among employees in 34 European countries. Another objective was to examine whether these associations varied according to occupation and country.

Methods

The study was based on data from the European Working Conditions Survey 2010 including 33,443 employees, 16,512 men and 16,931 women, from 34 European countries. Well-being was measured by the WHO-5 well-being index. Twenty-five psychosocial work factors were constructed including job demands, role stressors, work hours, job influence and freedom, job promotion, job insecurity, social support, quality of leadership, discrimination and violence at work, and work-life imbalance. The associations between these factors and well-being were examined using multilevel logistic regression analyses. Different models were performed including interaction tests.

Results

When all 25 psychosocial work factors were studied simultaneously in the same model with adjustment variables, 13 showed a significant association with poor well-being among both genders: quantitative demands, demands for hiding emotions, low possibilities for development, low meaning of work, low role conflict, low quality of leadership, low social support, low sense of community, job insecurity, low job promotion, work-life imbalance, discrimination, and bullying. The association with low sense of community on poor well-being was particularly strong.

Conclusions

A large number of psychosocial work factors were associated with poor well-being. Almost no country and occupational differences were found in these associations. This study gave a first European overview and could be useful to inform cross-national policy debate.     

Differences in quality of life of hemodialysis patients between dialysis centers

Purpose

Hemodialysis patients undergo frequent and long visits to the clinic to receive adequate dialysis treatment, medical guidance, and support. This may affect health-related quality of life (HRQOL). Although HRQOL is a very important management aspect in hemodialysis patients, there is a paucity of information on the differences in HRQOL between centers. We set out to assess the differences in HRQOL of hemodialysis patients between dialysis centers and explore which modifiable center characteristics could explain possible differences.

Methods

This cross-sectional study evaluated 570 hemodialysis patients from 24 Dutch dialysis centers. HRQOL was measured with the Kidney Disease Quality Of Life-Short Form (KDQOL-SF).

Results

After adjustment for differences in case-mix, three HRQOL domains differed between dialysis centers: the physical composite score (PCS, P?=?0.01), quality of social interaction (P?=?0.04), and dialysis staff encouragement (P?=?0.001). These center differences had a range of 11?C21 points on a scale of 0?C100, depending on the domain. Two center characteristics showed a clinical relevant relation with patients?? HRQOL: dieticians?? fulltime-equivalent and the type of dialysis center.

Conclusion

This study showed that clinical relevant differences exist between dialysis centers in multiple HRQOL domains. This is especially remarkable as hemodialysis is a highly standardized therapy.     

Household crowding and psychosocial health among Inuit in Greenland

Objectives

Poor housing conditions experienced by many Indigenous peoples threaten their health and well-being. This study examines whether household crowding is associated with poorer psychosocial health among Greenlanders, and the mediating role of social support. It also assesses whether Inuit men and women are differently influenced by their housing conditions.

Methods

Data on more than 3,000 Inuit aged 18 years and older are from the Inuit health in transition Greenland survey. Associations between household crowding and composition, and mental well-being and binge drinking were examined using logistic regression models, adjusting for individuals’ characteristics.

Results

Household crowding was associated with poorer mental well-being. Binge drinking was more common among people living in households without children. These effects were more important for women than for men. The association between household crowding and mental well-being was significantly mediated by social support. This suggests that having a strong social network may buffer the deleterious impacts of household crowding.

Conclusions

Targeting housing conditions and fostering social support as part of population health interventions might contribute to improving psychosocial health and well-being in Greenland.     

Measuring the psychosocial health of adolescent and young adult (AYA) cancer survivors: a critical review

Background

Adolescent and young adult (AYA) cancer survivors require psychometrically rigorous measures to assess their psychosocial well-being. Without methodologically adequate scales the accuracy of information obtained on the prevalence of needs, predictors of risk, and the potential success of any interventions, can be questioned. This review assessed the psychometric properties of measures designed specifically to identify the psychosocial health of this unique population.

Methods

Medline, PsycINFO, CINAHL and EMBASE databases were searched to identify measures developed to assess the psychosocial health of AYA cancer survivors. Searches were limited to the years 1998-2008. A search of Medline revealed that the number of publications related to the assessment of psychosocial well-being in AYA cancer survivors prior to this period were minimal. The psychometric properties of identified measures were evaluated against pre-determined and generally accepted psychometric criteria including: reliability (internal consistency and test-retest); validity (face, content, construct, and criterion); responsiveness; acceptability; and feasibility.

Results

Seven quality of life measures met the inclusion criteria. No measures of unmet need were identified. All seven measures reported adequate internal consistency, face, content, and construct validity. Test-retest reliability, criterion (predictive) validity, responsiveness, acceptability, and feasibility were rarely examined.

Conclusions

There is a need to further evaluate the psychometric properties of existing quality of life measures for AYA cancer survivors. Valid, reliable, and acceptable measures which can assess the psychosocial needs of this population should also be developed.     

Domains of quality of life: results of a three-stage Delphi consensus procedure among patients,family of patients,clinicians, scientists and the general public

Purpose

Our key objective is to identify the core domains of health-related quality of life (QoL). Health-related QoL utility scales are commonly used in economic evaluations to assess the effectiveness of health-care interventions. However, health-care interventions are likely to affect QoL in a broader sense than is quantifiable with traditional scales. Therefore, measures need to go beyond these scales. Unfortunately, there is no consensus in the scientific literature on the essential domains of QoL.

Methods

We conducted a three-stage online Delphi consensus procedure to identify the key domains of health-related QoL. Five stakeholder groups (i.e., patients, family of patients, clinicians, scientists and general public) were asked, on three consecutive occasions, what they perceive as the most important domains of health-related QoL. An analysis of existing (health-related) QoL and well-being measurements formed the basis of the Delphi-procedure.

Results

In total, 42 domains of QoL were judged, covering physical, mental and social aspects. All participants rated ‘self-acceptance’, ‘self-esteem’ and ‘good social contacts’ as essential. Strikingly, mental and social domains are perceived as more essential than physical domains across stakeholders groups.

Conclusions

In traditionally used health-related QoL utility measures, physical domains like ‘mobility’ are prominently present. The Delphi-procedure shows that health-related QoL (utility) scales need to put sufficient emphasis on mental and social domains to capture aspects of QoL that are essential to people.