Generic Health Status Measure Research Articles

Cross-cultural adaptation and psychometric properties of the Chinese tinnitus functional index

Objectives: To establish the reliability, validity and responsiveness of the Chinese version of the Tinnitus Functional Index (TFI-CH) in measuring tinnitus severity in Hong Kong Chinese population. Design: This is a cross-sectional psychometric validation study. Study sample: Subjects were 124 adult Chinese who attended the audiology clinics in a hospital setting for tinnitus treatment. Results: The TFI-CH showed good internal consistency reliability (α = 0.94) and test–retest reliability (ICC = 0.84). Confirmatory factor analysis revealed that the TFI-CH has eight factors which are exactly the same as the original version. The TFI-CH has good convergent and divergent validity as supported by the strong correlation of the overall scale with other tinnitus-related distress measures (r = 0.86, p < 0.01) and weaker correlation with the general health status measures. Moderate to strong effect sizes obtained 3 months after initial visit indicated that the TFI-CH is responsive in detecting change in tinnitus suffering. Conclusions: The results of this study demonstrate that the TFI-CH is a reliable and valid measure which should be useful in both clinical and research settings for intake assessment and for measuring treatment-related changes in tinnitus.

Variability in self-rated health trajectories from adolescence to young adulthood by demographic factors

Self-rated health (SRH) is a robust measure of general health status and an indicator of where and when to target disease prevention efforts—especially in adolescent populations when clinical endpoints are rare. This study's purpose was to model SRH trajectories from ages 13 to 31 and identify whether and when differences between demographic groups emerge. We employed a conditional latent growth model of SRH in December 2016 using a nationally representative sample of 11,512 adolescents from the National Longitudinal Study of Adolescent to Adult Health data collected in 1994–2008. The average SRH trajectory is curvilinear: SRH increases until age 21 and then decreases. This trajectory contains significant between-individual variability in the intercept and linear slope. Males and self-identified non-Hispanic Blacks had higher SRH at age 13 but experienced steeper linear declines than their demographic counterparts. Individuals who grew up in households without two parents and whose parents did not graduate college had consistently lower SRH compared to those living in households with two parents and whose parents graduated college. Self-rated health is not stable over the span of early adolescence to young adulthood; demographic factors account for differences in individual variability around the starting point and overtime changes in SRH. Because these differences are apparent as early as age 13years, prevention efforts targeting demographic-based disparities should occur early in life.

Patient-reported outcome scores underestimate the impact of major complications in patients undergoing spine surgery for degenerative conditions.

OBJECTIVE Patient-reported outcomes (PROs) such as the Oswestry Disability Index (ODI) and EuroQol-5D (EQ-5D) are widely used to evaluate treatment outcomes following spine surgery for degenerative conditions. The goal of this study was to use the Charlson Comorbidity Index (CCMI) as a measure of general health status, for comparison with standard PROs. METHODS The authors examined serial CCMI scores, complications, and PROs in 371 patients treated surgically for degenerative lumbar spine conditions who were enrolled in the Quality and Outcomes Database from a single center. The cohort included 152 males (41%) with a mean age of 58.7 years. Patients with no, minor, or major complications were compared at baseline and at 1 year postoperatively. RESULTS Minor complications were observed in 177 patients (48%), and major complications in 34 (9%). There were no significant differences in preoperative ODI, EQ-5D, or CCMI among the 3 groups. At 1 year, there was a significantly greater deterioration in CCMI in the major complication group (1.03) compared with the minor (0.66) and no complication groups (0.44, p < 0.006), but no significant difference in ODI or EQ-5D. CONCLUSIONS Despite equivalent improvements in PROs, patients with major complications actually had greater deterioration in their general health status, as evidenced by worse CCMI scores. Because CCMI is predictive of medical and surgical risk, patients who sustained a major complication now carry a greater likelihood of adverse outcomes with future interventions, including subsequent spine surgery. Although PRO scores are a key metric, they fail to adequately reflect the potential long-term impact of major perioperative complications.

Relationship between symptom burden and health status: analysis of the MDASI-BT and EQ-5D.

Patients with glioma are highly symptomatic and often have functional limitations from the time of diagnosis. Measuring health status may have value in determining impact of disease. This study provided a description of health status and utility scores in glioma patients throughout the illness trajectory using the EQ-5D (a functional measure of general health status). Furthermore, it evaluated the information provided by the MD Anderson Symptom Inventory-Brain Tumor (MDASI-BT; a measure of symptom burden and interference) in describing health-related quality of life as assessed by the EQ-5D. Glioma patients completed the EQ-5D and MDASI-BT. Disease and clinical details were collected by medical record review. Linear regression evaluated whether MDASI-BT scores adequately predict patient health outcomes measured by the EQ-5D. The sample included 100 patients (65% male, 78% with a glioblastoma, median age 52 [range, 20-75], 56% in active treatment). Seventy-two percent of patients reported functional limitations in at least 1 area. Extreme cases reported inability to perform usual activities (8%) and significant anxiety/depression (5%). The MDASI-BT neurologic factor and activity-related interference (walking/activity/work) explained 52% of the variability in the EQ-5D in this patient population while adjusting for the effect of tumor grade, recurrence status, and performance status. The majority of glioma patients reported at least 1 functional limitation on the EQ-5D. Over half of the variance in the EQ-5D was explained by the MDASI-BT, performance status, tumor grade, and recurrence status. The resultant model demonstrates the significant contribution of symptom burden on health status in glioma patients.

Changes in disease-specific versus generic health status measures after left ventricular assist device implantation: Insights from INTERMACS

Quantifying quality of life (QoL) after left ventricular assist device (LVAD) remains challenging. Heart failure (HF)-specific health status measures are ideal for assessing symptoms of HF; however, if patients' QoL is limited by other factors, they may experience improved HF-specific QoL but no concurrent improvement in generic QoL. We sought to examine and predict discrepancies between disease-specific and generic QoL measures after LVAD. We examined HF-specific and generic QoL with the Kansas City Cardiomyopathy Questionnaire (KCCQ) and EuroQol-5D Visual Analog Scale (VAS), respectively, among 1,888 patients with advanced heart failure who underwent LVAD implantation from 2012 to 2014 as part of the INTERMACS registry. Both measures showed substantial improvement, on average, at 6 months after LVAD, with mean changes of 32.7 ± 25.0 and 27.6 ± 27.4, respectively. Among the 1,539 patients (81.5%) with moderate/large improvement in KCCQ, 334 (21.7%) had discordant changes in generic QoL (i.e., VAS did not substantially increase despite improvement in KCCQ). In a multivariable logistic regression model, baseline VAS score was the strongest predictor of KCCQ-VAS discordance, whereas post-LVAD complications were not significant predictors of discordance. Most patients have major improvements in both HF-specific and generic QoL after LVAD implantation, and discordance in these measures after LVAD is uncommon. When it did occur, discordance was primarily observed in patients who reported good generic QoL on the VAS before LVAD (despite substantial impairment due to congestive HF). These results support the continued use of HF-specific health status measures to monitor QoL before and after LVAD implantation.

Building a new life in Australia: an analysis of the first wave of the longitudinal study of humanitarian migrants in Australia to assess the association between social integration and self-rated health

ObjectivesTo assess the relationship between social integration and physical and mental health among humanitarian migrants (HMs) in Australia.Design, setting and participantsWe used the recently released first wave of data from...

Adult Spinal Deformity: Epidemiology, Health Impact, Evaluation, and Management

Spinal deformity in the adult is a common medical disorder with a significant and measurable impact on health-related quality of life. The ability to measure and quantify patient self-reported health status with disease-specific and general health status measures, and to correlate health status with radiographic and clinical measures of spinal deformity, has enabled significant advances in the assessment of the impact of deformity on our population, and in the evaluation and management of spinal deformity using an evidence-based approach. There has been a significant paradigm shift in the evaluation and management of patients with adult deformity. The paradigm shift includes development of validated, disease-specific measures of health status, recognition of deformity in the sagittal plane as a primary determinant of health status, and information on results of operative and medical/interventional management strategies for adults with spinal deformity. Since its inception in 1966, the Scoliosis Research Society (SRS) has been an international catalyst for improving the research and care for patients of all ages with spinal deformity. The SRS Adult Spinal Deformity Committee serves the mission of developing and defining an evidence-based approach to the evaluation and management of adult spinal deformity. The purpose of this overview from the SRS Adult Deformity Committee is to provide current information on the epidemiology and impact of adult deformity, and to provide patients, physicians, and policy makers a guide to the evidence-based evaluation and management of patients with adult deformity.

Evaluating the sensitivity of EQ-5D in a sample of patients with type 2 diabetes mellitus in two tertiary health care facilities in Nigeria.

BackgroundThe EQ-5D instrument is arguably the most well-known and commonly used generic measure of health status internationally. Although the instrument has been employed in outcomes studies of diabetes mellitus in many countries, it has not yet been used in Nigeria.ObjectiveThis study was carried out to assess the sensitivity of the EQ-5D instrument in a sample of Nigerian patients with type 2 diabetes mellitus (T2DM).MethodsA cross-sectional study was conducted using the EQ-5D instrument to assess the self-reported quality of life of patients with T2DM attending two tertiary healthcare facilities in south eastern Nigeria consenting patients completed the questionnaire while waiting to see a doctor. A priori hypotheses were examined using multiple regression analysis to model the relationship between the dependent variables (EQ VAS and EQ-5D Index) and hypothesized independent variables.ResultsA total of 226 patients with T2DM participated in the study. The average age of participants was 57 years (standard deviation 10 years) and 61.1 % were male. The EQ VAS score and EQ-5D index averaged 66.19 (standard deviation 15.42) and 0.78 (standard deviation 0.21) respectively. Number of diabetic complications, number of co-morbidities, patient’s age and being educated predicted EQ VAS score by −6.76, −6.15, −0.22, and 4.51 respectively. Also, number of diabetic complications, number of co-morbidities, patient’s age and being educated predicted EQ-5D index by −0.12, −0.07, −0.003, and 0.06 respectively..ConclusionOur findings indicate that the EQ-5D could adequately capture the burden of type 2 diabetes and related complications among Nigerian patients.

QOL-25EVALUATION OF THE UTILITY OF THE EQ-5D AND MDASI-BT IN PRIMARY BRAIN TUMOR PATIENTS

BACKGROUND: Patients with malignant glioma are highly symptomatic and often have functional limitations beginning from the time of diagnosis. The utility of measuring general health status may have value in determining impact of disease. This study provided a description of health status and utility scores in glioma patients throughout the illness trajectory using the EQ-5D. Furthermore, it evaluated the additive information provided by MD Anderson Symptom Inventory-Brain Tumor (MDASI-BT) in describing health-related quality of life as assessed by the EQ-5D. METHODS: Malignant glioma patients completed the EQ-5D and MDASI-BT self-reports. The MDASI-BT is a measure of symptom burden and interference whereas the EQ-5D is a functional measure of general health status. Linear regression evaluated whether MDASI-BT scores adequately predict patient health outcomes measured by the EQ-5D. RESULTS: The sample included 100 patients [65% male, 75% with a GBM, median age 52 (range 20-75), 56% in active treatment]. Thirty percent of patients reported no problems on any of the 5 areas measured by the EQ-5D. The remaining 70% reported some/moderate problems in at least 1 area. The most extreme cases reported inability to perform usual activities (8%) and significant anxiety/depression (5%). The MDASI-BT neurologic factor score and the WAW (Walking/Activity/Work) interference score explained 52% of the variability in the EQ-5D in this patient population while adjusting for the effect of tumor grade, recurrence status, and Karnofsky Performance Status (KPS). Residual diagnostics confirmed the adequacy of model fit. CONCLUSIONS: The majority of brain tumor patients reported at least one functional limitation on the EQ-5D. Over half of the variance in the EQ-5D was explained by the MDASI-BT, KPS, tumor grade, and recurrence status underscoring the benefit of using this information for planning patient care. The resultant model demonstrates the significant contribution symptom burden has on determining health status in this patient population.

Intelligence in youth and health at age 50

BackgroundThe link between intelligence in youth and all-cause mortality in later-life is well established. To better understand this relationship, the current study examines the links between pre-morbid intelligence and a number of specific health outcomes at age 50 using the NLSY-1979 cohort. MethodsParticipants were the 5793 participants in the NLSY-79 who responded to questions about health outcomes at age 50. Sixteen health outcomes were examined: two were summary measures (physical health and functional limitation), 9 were diagnosed illness conditions, 4 were self-reported conditions, and one was a measure of general health status. Linear and logistic regressions were used, as appropriate, to examine the relationship between intelligence in youth and the health outcomes. Age, sex and both childhood and adult SES, and its sub-components – income, education, & occupational prestige – are all adjusted for separately. Results & conclusionHigher pre-morbid intelligence is linked with better physical health at age 50, and a lower risk for a number of chronic health conditions. For example, a 1 SD higher score in IQ was significantly associated with increased odds of having good, very good, or excellent health, with an odds ratio of 1.70 (C.I. 1.55–1.86). Thirteen of the illness outcomes were significantly and negatively associated with IQ in youth; the odds ratios ranged from 0.85 for diabetes/high blood sugar to 0.65 for stroke, per one standard deviation higher score in IQ. Adjustment for childhood SES led to little attenuation but adult SES partially mediated the relationship for a number of conditions. Mediation by adult SES was not consistently explained by any one of its components—income, education, and occupation status. The current findings contribute to our understanding of lower intelligence as a risk factor for poor health and how this may contribute to health inequalities.

Prediction of pain outcomes in a randomized controlled trial of dose-response of spinal manipulation for the care of chronic low back pain.

BackgroundNo previous studies have created and validated prediction models for outcomes in patients receiving spinal manipulation for care of chronic low back pain (cLBP). We therefore conducted a secondary analysis alongside a dose-response, randomized controlled trial of spinal manipulation.MethodsWe investigated dose, pain and disability, sociodemographics, general health, psychosocial measures, and objective exam findings as potential predictors of pain outcomes utilizing 400 participants from a randomized controlled trial. Participants received 18 sessions of treatment over 6-weeks and were followed for a year. Spinal manipulation was performed by a chiropractor at 0, 6, 12, or 18 visits (dose), with a light-massage control at all remaining visits. Pain intensity was evaluated with the modified von Korff pain scale (0–100). Predictor variables evaluated came from several domains: condition-specific pain and disability, sociodemographics, general health status, psychosocial, and objective physical measures. Three-quarters of cases (training-set) were used to develop 4 longitudinal models with forward selection to predict individual “responders” (≥50 % improvement from baseline) and future pain intensity using either pretreatment characteristics or post-treatment variables collected shortly after completion of care. The internal validity of the predictor models were then evaluated on the remaining 25 % of cases (test-set) using area under the receiver operating curve (AUC), R2, and root mean squared error (RMSE).ResultsThe pretreatment responder model performed no better than chance in identifying participants who became responders (AUC = 0.479). Similarly, the pretreatment pain intensity model predicted future pain intensity poorly with low proportion of variance explained (R2 = .065). The post-treatment predictor models performed better with AUC = 0.665 for the responder model and R2 = 0.261 for the future pain model. Post-treatment pain alone actually predicted future pain better than the full post-treatment predictor model (R2 = 0.350). The prediction errors (RMSE) were large (19.4 and 17.5 for the pre- and post-treatment predictor models, respectively).ConclusionsInternal validation of prediction models showed that participant characteristics preceding the start of care were poor predictors of at least 50 % improvement and the individual’s future pain intensity. Pain collected shortly after completion of 6 weeks of study intervention predicted future pain the best.

Predicting the EQ-5D-3L Preference Index from the SF-12 Health Survey in a National US Sample: A Finite Mixture Approach.

Background. When data on preferences are not available, analysts rely on condition-specific or generic measures of health status like the SF-12 for predicting or mapping preferences. Such prediction is challenging because of the characteristics of preference data, which are bounded, have multiple modes, and have a large proportion of observations clustered at values of 1. Methods. We developed a finite mixture model for cross-sectional data that maps the SF-12 to the EQ-5D-3L preference index. Our model characterizes the observed EQ-5D-3L index as a mixture of 3 distributions: a degenerate distribution with mass at values indicating perfect health and 2 censored (Tobit) normal distributions. Using estimation and validation samples derived from the Medical Expenditure Panel Survey 2000 dataset, we compared the prediction performance of these mixture models to that of 2 previously proposed methods: ordinary least squares regression (OLS) and two-part models. Results. Finite mixture models in which predictions are based on classification outperform two-part models and OLS regression based on mean absolute error, with substantial improvement for samples with fewer respondents in good health. The potential for misclassification is reflected on larger root mean square errors. Moreover, mixture models underperform around the center of the observed distribution. Conclusions. Finite mixtures offer a flexible modeling approach that can take into account idiosyncratic characteristics of the distribution of preferences. The use of mixture models allows researchers to obtain estimates of health utilities when only summary scores from the SF-12 and a limited number of demographic characteristics are available. Mixture models are particularly useful when the target sample does not have a large proportion of individuals in good health.

Personalised care planning for adults with chronic or long-term health conditions.

Personalised care planning for adults with chronic or long-term health conditions.

Journal of Diabetes News

Journal of Diabetes News

Narcolepsy and the Sickness Impact Profile: A general health status measure

ObjectiveWe characterized functional impact of narcolepsy on patients using a general health status measure, the Sickness Impact Profile (SIP). It has 136 items grouped into 12 categories and 2 dimensions. MethodsWe ascertained patients with physician-diagnosed narcolepsy in King County, Washington using multiple overlapping methods over four years starting July 2001. We recruited 226 patients (mean age 48 years, 65% female) who underwent in-person interviews and completed: Epworth Sleepiness Scale (ESS), Ullanlinna Narcolepsy Scale (UNS), and SIP. Linear regression was used to assess correlations between measures. ResultsMean percent of total dysfunction was higher for psychosocial dimension (13.2) and independent categories (13.4) than physical dimension (5.0). Mean percent of total dysfunction in descending order for categories was: Sleep and Rest (23.6), Alertness Behavior (22.6), and Recreation and Pastimes (20.6). Ten items were endorsed by at least a third of all patients but only two of them concerned sleep. Unexpectedly, among the top ten items were, “My sexual activity is decreased,” and “I forget a lot, for example, things that happened recently, where I put things, appointments.” Percent of overall dysfunction on SIP (mean 10.3) was significantly correlated with ESS (r=0.36, p<0.001) and UNS (r=0.47, p<0.001). In this population-based sample, mean percent of total dysfunction on SIP in patients with narcolepsy (10.3) was higher than previously reported in the general population (3.6) and similar to that in other chronic disabling conditions. DiscussionThe SIP correlated with ESS and UNS, and captured unique aspects of the impact of narcolepsy on patients.

Health consequences of child labour in Bangladesh

This paper examines the effect of child labour on child health outcomes in Bangladesh. We use self-reported injury or illness due to work as a general measure of health status. Using the Bangladesh National Child Labour Survey data for 2002-2003, the results reveal that child labour is positively and significantly associated with the probability of being injured or becoming ill once the endogenous relationship between these factors is accounted for. These findings remain robust when we consider child labour hours and restrict our analysis to rural areas. Moreover, the intensity of injury or illness is significantly higher in construction and manufacturing sectors than in other sectors. Investigating the effect of child labour on subjective health across age groups, we find that health disadvantages for different age groups are not essentially parallel.

The Oxford Participation and Activities Questionnaire: study protocol.

BackgroundWith an ageing population and increasing demands on health and social care services, there is growing importance attached to the management of long-term conditions, including maximizing the cost-effectiveness of treatments. In line with this, there is increasing emphasis on the need to keep people both active and participating in daily life. Consequently, it is essential that well developed and validated instruments that can meaningfully assess levels of participation and activity are widely available. Current measures, however, are largely focused on disability and rehabilitation, and there is no measure of activity or participation for generic use that fully meets the standards set by regulatory bodies such as the US Food and Drug Administration. Here we detail a protocol for the development and validation of a new patient-reported outcome measure (PROM) for assessment of participation and activity in people experiencing a variety of health conditions, ie, the Oxford Participation and Activities Questionnaire (Ox-PAQ). The stages incorporated in its development are entirely in line with current regulations and represent best practice in the development of PROMs.MethodsDevelopment of the Ox-PAQ is theoretically grounded in the World Health Organization International Classification of Functioning, Disability, and Health. The project incorporates a new strategy of engaging with stakeholders from the outset in an attempt to identify those characteristics of PROMs considered most important to a range of potential users. Items will be generated through interviews with patients from a range of conditions. Pretesting of the instrument will be via cognitive interviews and focus groups. A postal survey will be conducted, with data subject to factor and Rasch analysis in order to identify appropriate dimensions and redundant items. Reliability will be assessed by Cronbach’s alpha and item-total correlations. A second, large-scale postal survey will follow, with the Ox-PAQ being administered in conjunction with generic measures of health status to further test the validity of the measure. The Ox-PAQ will again be administered at 2 weeks to assess test-retest reliability and at 3 months to assess responsiveness.ConclusionThe development of the Ox-PAQ is a timely one. With increasing emphasis being placed on the importance of keeping people active and participating in daily life, the instrument has the potential for significant uptake. Its primary use is intended to be in clinical trials and for evaluation of interventions targeted at maintaining activity and participation.

Multivariable Modeling of Phenotypic Risk Factors for First-Onset TMD: The OPPERA Prospective Cohort Study

Incidence of temporomandibular disorder (TMD) was predicted with multivariable models that used putative risk factors collected from initially TMD-free individuals in the Orofacial Pain: Prospective Evaluation and Risk Assessment (OPPERA) study. The 202 baseline risk factors included sociodemographic and clinical characteristics, measures of general health status, experimental pain sensitivity, autonomic function, and psychological distress. Study participants (n = 2,737) were then followed prospectively for a median of 2.8 years to ascertain cases of first-onset TMD. Lasso regression and random forest models were used to predict incidence of first-onset TMD using all of the aforementioned measures. Variable importance scores identified the most important risk factors, and their relationship with TMD incidence was illustrated graphically using partial dependence plots. Two of the most important risk factors for elevated TMD incidence were greater numbers of comorbid pain conditions and greater extent of nonspecific orofacial symptoms. Other important baseline risk factors were preexisting bodily pain, heightened somatic awareness, and greater extent of pain in response to examiners' palpation of the head, neck, and body. Several demographic variables persisted as risk factors even after adjusting for other OPPERA variables, suggesting that environmental variables not measured in OPPERA may also contribute to first-onset TMD. PerspectiveMultivariable methods were used to identify the most important predictors of first-onset TMD in the OPPERA study. Important variables included comorbid pain conditions, preexisting pain, and somatic awareness. Demographic characteristics, which probably reflect environmental variables not measured in OPPERA, also appear to play an important role in the etiology of TMD.

Comprehensive health assessment and five‐yr follow‐up of allogeneic islet transplant recipients

In patients with type 1 diabetes mellitus (T1DM) complicated by severe hypoglycemic episodes, fear of hypoglycemia can significantly impact daily life. We evaluated whether restoration of glycemic awareness and prevention of hypoglycemia by islet allotransplant could reduce fear and improve health status. We conducted a comprehensive evaluation of patient-based outcomes in 48 T1DM subjects screened for allogeneic islet transplant alone (ITA) and 27 subjects who received an ITA. A battery of generic health status and diabetes-specific measures were used to assess ITA at evaluation, six months, and then annually after ITA. Allogeneic islet transplant was associated with a reduction in behaviors adopted in avoiding hypoglycemia (p Value < 0.001) and attenuation in concerns about hypoglycemic episodes (p Value < 0.001). Changes in hypoglycemia fear tracked most closely with insulin use. While there was a trend toward global improvement in health as measured by the EQ-5D (p Value = 0.002) and in depression symptoms as measured by the Beck (p Value = 0.003), physical health remained unchanged following ITA. Our findings support the socioemotional benefits of ITA during the five years after ITA, which to some extent remains dependent on preservation of islet graft function.

The development of new research methods for the valuation of EQ-5D-5L

The EQ-5D is arguably now the most well-known and commonly used generic measure of health status internationally. It is available in 169 languages, with applications in clinical, cost-effectiveness and population health studies, as well as (more recently) its routine use by health-care systems. A key feature of the EQ-5D is the availability of ‘value sets’ to weight the EQ-5D health states reported by patients and populations. These value sets provide, for each of the 243 health states described by the EQ-5D, a value (‘utility’) on a scale anchored at 1 (full health) and 0 (dead), reflecting the preferences of the general public, which can be used to estimate quality-adjusted life years (QALYs). These value sets are widely used in the analysis of EQ-5D data and inform a wide range of resource allocation decisions. Value sets for the 3-level version of the EQ-5D (3L) are available