Multi-attribute Health Status Classification Research Articles

Association of patient-reported cognitive impairment with quality of life and employment in multiple sclerosis

Background:Cognition is frequently affected in persons with multiple sclerosis (MS). Cognitive impairment (CI) is associated with decreased quality of life (QOL) and employment status. Yet, CI assessed using patient-reported outcome measures is not as well studied and is thought to be influenced by other symptoms. Health Utilities Index 3 (HUI3) is a multi-attribute health-status classification system that assesses 8 different single attributes, including cognition.Methods:The North American Consortium of Multiple Sclerosis (NARCOMS) Registry, a voluntary, self-report registry for persons with MS, Spring 2019 survey collected the HUI3 and self-reported assessment of health-related QOL (RAND-12), cognitive status, depression, fatigue, disability, employment, disease-modifying therapy use, and sociodemographic data. We assessed the relationship between patient-reported cognitive CI from the HUI3 (HUI-C), QOL, and employment while adjusting for factors previously associated with the outcomes. For employment outcomes, the cohort was limited to participants 65 years of age or younger.Results: Of the 6,227 respondents, 56.4 % reported cognitive difficulty with the HUI-C. After adjusting for multiple covariates, cognitive difficulty was associated with 1.2 point lower physical QOL for each 0.1 decrease in HUI-C (p < 0.0001). Mental QOL decreased by 2 points for each 0.1 decrease in HUI-C (p < 0.0001). Cognitive difficulty was associated with a 10 % decreased odds of employment in the multivariable model (p < 0.0001).Discussion: Patient-reported CI was associated with lower health-related and vocational outcomes for MS patients, even after accounting for age, income, depression, fatigue, and disability associated with cognition. The HUI-C is a single attribute score derived from the HUI3 that may facilitate the evaluation of CI in MS.

131: Health and Quality of Life Outcomes for a Cohort of Children with Severe Traumatic Brain Injury

The Multiattribute Health Status Classification System (MHSCS) is a parent/proxy administered tool including a series of health-specific domains that give levels of functioning between 1 (normal health) to 4 or 5 (most severe). Previous studies have used the MHSCS to document chronic health impairment and child morbidity (Gemke et al., 1995; 1996; Feeny et al., 1992; 1993; Saigal et al., 1994). There is a high inter-rater reliability exceeding 70% between caregivers and physiatrists with sensitivity and specificity from acute injury predictors at 75% and 70% (Robertson et al., 2001). The MHSCS is a useful parent-report surveillance tool to audit outcome after severe Traumatic Brain Injury (TBI). To assess the post-injury health outcomes of young children sustaining a severe TBI using the MHSCS. This is a retrospective chart review of children who sustained severe TBI before 12 years of age & were followed in the Brain Injury program. Severe TBI was defined as Glasgow Coma Scale =<8/15. Ethics approval was granted. Demographic variables were collected and expressed as mean (± SD) (range). A multivariate analysis of variance was conducted to compare scores on the MHSCS. A total of 18 children (10 male, eight female) mean age 6.84±3.4 years, (range 1.5 to 11.8 years) were reviewed at three years (n=8) or ≥5 years (n=10) post-injury. An independent t test indicated no significant difference between the Total scores at three and ≥5 years (P=0.23) (Chart 1). The overall difference across subscales was not significantly different (Chart 2). The Cognition Subscale scores increased significantly between three and ≥5 years (P=0.038) and the Emotional Subscale scores increased marginally (P=0.073). Outcomes of severe TBI persist beyond the acute recovery stages. Children experience significantly more difficulties with cognition and emotion at ≥5 years post injury than at three years. This may reflect emerging deficits as they face more complex material at school. Children also experience marginally more emotional difficulties at ≥5 years than at three years. This may reflect developmental maturity making them more aware of their TBI-related limitations. Although it was not significantly different, there was a trend towards lower scores for Mobility and Self-Care Subscales. The MHSCS was a useful parent-report surveillance tool to audit outcome after severe TBI.

Utility preference score measurement in women with fecal incontinence

The objective of the study was to evaluate the construct validity of 3 multiattribute health status classification system instruments, and a visual analog scale (VAS) for measuring utility scores for women with fecal incontinence (FI). Utility scores were measured in 200 women with 1 or more of the following diagnoses: fecal or urinary incontinence or pelvic organ prolapse. Pelvic floor symptom severity was measured using the Pelvic Floor Distress Inventory (PFDI-20), and quality of life was assessed with the Pelvic Floor Impact Questionnaire (PFIQ-7). Construct and concurrent validity were evaluated. After adjusting for age, comorbidities, urinary incontinence, and prolapse, utility scores were significantly lower for women with FI than women without FI for all health status instruments but not the VAS. All health status instruments had significant correlations with PFDI-20 and PFIQ-7 scores. The health status instruments provide valid utility scores in women with FI and would be useful in clinical trials and cost-effectiveness research.

Corpus Callosum and Inferior Forebrain White Matter Microstructure Are Related to Functional Outcome from Raised Intracranial Pressure in Child Traumatic Brain Injury

In severe paediatric traumatic brain injury (TBI), a common focus of treatment is raised intracranial pressure (ICP). We have previously reported frontal cerebral vulnerability with executive deficits from raised ICP in paediatric TBI. Now, using diffusion tensor imaging (DTI) in a different population, we have examined fractional anisotropy (FA), and mean, axial and radial diffusivity (MD, AD, RD) in 4 regions of the corpus callosum (CC) and in both inferior frontal regions. Our aim was to examine during the chronic phase of TBI whether the CC cross-sectional area correlated with regional DTI metrics of white matter microstructure, with global outcome ratings of function (Functional Independence Measure and Multiattribute Health Status Classification) and with performance in the Rey-Osterrieth Complex Figure (ROCF) test. We examined 33 paediatric TBI cases who were followed, on average, 4.9 years after severe injury. All cases had received mechanical ventilation during their acute treatment and, a priori, they were assigned to a non-ICP or a raised ICP group. Twenty-two participants had mainly right-sided injury at the time of acute ictus. The findings confirm that severe TBI in childhood, complicated by intracranial hypertension, results in CC vulnerability. In the chronic phase of recovery, it is reduced in the cross-sectional area, it is more compact and thinned, and the anterior region is disproportionately small. Late after raised ICP, we have also found that individuals exhibit regional microstructural abnormality with combined reduced FA and increased MD, AD and RD. Smaller size and such microstructural changes in the anterior CC were associated with similar right-sided (rather than left-sided) frontal microstructural changes in the ICP group. Taken together, this evidence points to an interaction between raised ICP-related brain tissue perturbation and focal frontal extracallosal injury, leading to anterior CC regional vulnerability, most likely wallerian degeneration. At long-term follow-up, this lack of white matter integrity in the anterior CC is correlated with functional outcome, particularly in aspects of social interaction and the copy component of the ROCF test, which suggests that the CC-to-forebrain function warrants further study in chronic TBI.

Burden of chronic physical conditions and mental disorders in primary care

The World Health Organization (WHO) has stated that the three leading causes of burden of disease in 2030 are projected to include HIV/AIDS, unipolar depression and ischaemic heart disease. To estimate health-related quality of life (HRQoL) and quality-adjusted life-year (QALY) losses associated with mental disorders and chronic physical conditions in primary healthcare using data from the diagnosis and treatment of mental disorders in primary care (DASMAP) study, an epidemiological survey carried out with primary care patients in Catalonia (Spain). A cross-sectional survey of a representative sample of 3815 primary care patients. A preference-based measure of health was derived from the 12-item Short Form Health Survey (SF-12): the Short Form-6D (SF-6D) multi-attribute health-status classification. Each profile generated by this questionnaire has a utility (or weight) assigned. We used non-parametric quantile regressions to model the association between both mental disorders and chronic physical condition and SF-6D scores. Conditions associated with SF-6D were: mood disorders, beta = -0.20 (95% CI -0.18 to -0.21); pain, beta = -0.08 (95%CI -0.06 to -0.09) and anxiety, beta = -0.04 (95% CI -0.03 to -0.06). The top three causes of QALY losses annually per 100 000 participants were pain (5064), mood disorders (2634) and anxiety (805). Estimation of QALY losses showed that mood disorders ranked second behind pain-related chronic medical conditions.

Identification of Cutpoints for Acceptable Health Status and Important Improvement in Patient-Reported Outcomes, in Rheumatoid Arthritis, Psoriatic Arthritis, and Ankylosing Spondylitis

To identify cutpoints reflecting Patient Acceptable Symptom State (PASS) and Minimal Clinically Important Improvement (MCII) in patient-reported multi-attribute health status classification systems and health status measurements among patients with rheumatoid arthritis (RA), ankylosing spondylitis (AS), and psoriatic arthritis (PsA). We identified patients with RA, AS, and PsA from the Norwegian disease-modifying antirheumatic drug (DMARD) register (NOR-DMARD). The patients (n = 4225) had started with DMARD and responded to the PASS and MCII anchoring questions at the 3-month followup examination. Receiver operating characteristics (ROC) curves with 80% specificity and the 75th percentile approach were used to identify PASS and MCII cutpoints in the EuroQol-5 Dimensions (EQ-5D) and the Short-Form-6 Dimensions (SF-6D) indexes, but also in other patient-reported outcomes (joint pain and patient global visual analog scale and Modified Health Assessment Questionnaire). The PASS cutpoints estimated with 80% specificity were around 0.70 in EQ-5D in all diseases and around 0.65 in SF-6D. The cutpoints were around 0.65 and 0.60, respectively, when the 75th percentile approach was used. The MCII cutpoints assessed by 80% specificity varied from 0.10 to 0.19 in EQ-5D and from 0.07 to 0.10 in SF-6D. The cutpoints for PASS in EQ-5D and SF-6D indicate that PASS corresponds to a health-related quality of life that is far from perfect health. Somewhat different cutpoints were identified for both PASS and MCII with 80% specificity versus the 75th percentile method.

Childhood outcomes after prescription of antibiotics to pregnant women with preterm rupture of the membranes: 7-year follow-up of the ORACLE I trial

The ORACLE I trial compared the use of erythromycin and/or amoxicillin-clavulanate (co-amoxiclav) with that of placebo for women with preterm rupture of the membranes without overt signs of clinical infection, by use of a factorial randomised design. The aim of the present study--the ORACLE Children Study I--was to determine the long-term effects on children of these interventions. We assessed children at age 7 years born to the 4148 women who had completed the ORACLE I trial and who were eligible for follow-up with a structured parental questionnaire to assess the child's health status. Functional impairment was defined as the presence of any level of functional impairment (severe, moderate, or mild) derived from the mark III Multi-Attribute Health Status classification system. Educational outcomes were assessed with national curriculum test results for children resident in England. Outcome was determined for 3298 (75%) eligible children. There was no difference in the proportion of children with any functional impairment after prescription of erythromycin, with or without co-amoxiclav, compared with those born to mothers who received no erythromycin (594 [38.3%] of 1551 children vs 655 [40.4%] of 1620; odds ratio 0.91, 95% CI 0.79-1.05) or after prescription of co-amoxiclav, with or without erythromycin, compared with those born to mothers who received no co-amoxiclav (645 [40.6%] of 1587 vs 604 [38.1%] of 1584; 1.11, 0.96-1.28). Neither antibiotic had a significant effect on the overall level of behavioural difficulties experienced, on specific medical conditions, or on the proportions of children achieving each level in reading, writing, or mathematics at key stage one. The prescription of antibiotics for women with preterm rupture of the membranes seems to have little effect on the health of children at 7 years of age. UK Medical Research Council.

Childhood outcomes after prescription of antibiotics to pregnant women with spontaneous preterm labour: 7-year follow-up of the ORACLE II trial

The ORACLE II trial compared the use of erythromycin and/or amoxicillin-clavulanate (co-amoxiclav) with that of placebo for women in spontaneous preterm labour and intact membranes, without overt signs of clinical infection, by use of a factorial randomised design. The aim of the present study--the ORACLE Children Study II--was to determine the long-term effects on children after exposure to antibiotics in this clinical situation. We assessed children at age 7 years born to the 4221 women who had completed the ORACLE II study and who were eligible for follow-up with a structured parental questionnaire to assess the child's health status. Functional impairment was defined as the presence of any level of functional impairment (severe, moderate, or mild) derived from the mark III Multi-Attribute Health Status classification system. Educational outcomes were assessed with national curriculum test results for children resident in England. Outcome was determined for 3196 (71%) eligible children. Overall, a greater proportion of children whose mothers had been prescribed erythromycin, with or without co-amoxiclav, had any functional impairment than did those whose mothers had received no erythromycin (658 [42.3%] of 1554 children vs 574 [38.3%] of 1498; odds ratio 1.18, 95% CI 1.02-1.37). Co-amoxiclav (with or without erythromycin) had no effect on the proportion of children with any functional impairment, compared with receipt of no co-amoxiclav (624 [40.7%] of 1523 vs 608 [40.0%] of 1520; 1.03, 0.89-1.19). No effects were seen with either antibiotic on the number of deaths, other medical conditions, behavioural patterns, or educational attainment. However, more children whose mothers had received erythromycin or co-amoxiclav developed cerebral palsy than did those born to mothers who received no erythromycin or no co-amoxiclav, respectively (erythromycin: 53 [3.3%] of 1611 vs 27 [1.7%] of 1562, 1.93, 1.21-3.09; co-amoxiclav: 50 [3.2%] of 1587 vs 30 [1.9%] of 1586, 1.69, 1.07-2.67). The number needed to harm with erythromycin was 64 (95% CI 37-209) and with co-amoxiclav 79 (42-591). The prescription of erythromycin for women in spontaneous preterm labour with intact membranes was associated with an increase in functional impairment among their children at 7 years of age. The risk of cerebral palsy was increased by either antibiotic, although the overall risk of this condition was low. UK Medical Research Council.

Do visual analogue scale (VAS) derived standard gamble (SG) utilities agree with Health Utilities Index utilities? A comparison of patient and community preferences for health status in rheumatoid arthritis patients

BackgroundAssessment of Health Related Quality of Life (HRQL) has become increasingly important and various direct and indirect methods and instruments have been devised to measure it. In direct methods such as Visual Analog Scale (VAS) and Standard Gamble (SG), respondent both assesses and values health states therefore the final score reflects patient's preferences. In indirect methods such as multi-attribute health status classification systems, the patient provides the assessment of a health state and then a multi-attribute utility function is used for evaluation of the health state. Because these functions have been estimated using valuations of general population, the final score reflects community's preferences. The objective of this study is to assess the agreement between community preferences derived from the Health Utilities Index Mark 2 (HUI2) and Mark 3 (HUI3) systems, and patient preferences.MethodsVisual analog scale (VAS) and HUI scores were obtained from a sample of 320 rheumatoid arthritis patients. VAS scores were adjusted for end-aversion bias and transformed to standard gamble (SG) utility scores using 8 different power conversion formulas reported in other studies. Individual level agreement between SG utilities and HUI2 and HUI3 utilities was assessed using the intraclass correlation coefficient (ICC). Group level agreement was assessed by comparing group means using the paired t-test.ResultsAfter examining all 8 different SG estimates, the ICC (95% confidence interval) between SG and HUI2 utilities ranged from 0.45 (0.36 to 0.54) to 0.55 (0.47 to 0.62). The ICC between SG and HUI3 utilities ranged from 0.45 (0.35 to 0.53) to 0.57 (0.49 to 0.64). The mean differences between SG and HUI2 utilities ranged from 0.10 (0.08 to 0.12) to 0.22 (0.20 to 0.24). The mean differences between SG and HUI3 utilities ranged from 0.18 (0.16 to 0.2) to 0.28 (0.26 to 0.3).ConclusionAt the individual level, patient and community preferences show moderate to strong agreement, but at the group level they have clinically important and statistically significant differences. Using different sources of preference might alter clinical and policy decisions that are based on methods that incorporate HRQL assessment. VAS-derived utility scores are not good substitutes for HUI scores.

An evaluation of the responsiveness of a comprehensive set of outcome measures for children and adolescents with traumatic brain injuries

The relative responsiveness of nine outcome measure scales was evaluated with 33 children and adolescents (aged 4-18 years) who had sustained traumatic brain injuries. Scales were selected to evaluate outcomes from each of the World Health Organization (WHO) International Classification of Functioning, Disability and Health domains. The outcome measures were administered to all participants during their inpatient rehabilitation stay and again at a follow-up clinic visit. No single outcome measure captured the diversity of improvement in this sample. The measures agreed that improvement had occurred, but did not agree about which children were improving. This result suggests that the scales were measuring different skills and outcomes. Three of the measures used in combination, either the Child Health Questionnaire or the Functional Independence Measure for Children, the American Speech-Language-Hearing Association National Outcome Measures System (Birth to Kindergarten NOMS/School-aged Health Care) and the Gross Motor Function Measure, are sufficient to detect change in each of the children where change occurred. The Pediatric Evaluation of Disability Inventory and the MultiAttribute Health Status Classification were the least responsive of the nine measures used.

Translation and cultural adaptation of Health Utilities Index (HUI) Mark 2 (HUI2) and Mark 3 (HUI3) with application to survivors of childhood cancer in Brazil

There are few publications reporting health-related quality of life (HRQL) in developing nations. Most instruments measuring HRQL have been developed in English-speaking countries. These instruments need to be culturally adapted for use in non-English-speaking countries. The HUI2 and HUI3 are generic, preference-based systems for describing health status and HRQL. Developed in Canada, the systems have been translated into more than a dozen languages and used worldwide in hundreds of studies of clinical and general populations. The Brazilian-Portuguese translation of the HUI systems was supervised by senior HUInc staff having experience with both the HUI systems and translations. The process included two independent forward translations of the multi-attribute health status classification systems and related questionnaires, consensus between translators on a forward translation, back-translation by two independent translators of the forward translation, and review of the back-translations by original developers of the HUI. The final questionnaires were tested by surveying a sample of convenience of 50 patients recruited at the Centro de Tratamento e Pesquisa-Hospital do Cancer in São Paulo, Brazil. Fifty patients were enrolled in the study. No assessor, patient or nurse or physician, reported problems answering the HUI questionnaires. No significant differences were found in mean overall HUI2 or HUI3 utility scores among types of assessors. Variability in scores are similar to those from other studies in Latin America and Canada. Test results provide preliminary evidence that the Brazilian-Portuguese translation is acceptable, understandable, reliable and valid for assessing health-status and HRQL among survivors of cancer in childhood in Brazil.

The Health Utilities Index (HUI®): concepts, measurement properties and applications

This is a review of the Health Utilities Index (HUI®) multi-attribute health-status classification systems, and single- and multi-attribute utility scoring systems. HUI refers to both HUI Mark 2 (HUI2) and HUI Mark 3 (HUI3) instruments. The classification systems provide compact but comprehensive frameworks within which to describe health status. The multi-attribute utility functions provide all the information required to calculate single-summary scores of health-related quality of life (HRQL) for each health state defined by the classification systems. The use of HUI in clinical studies for a wide variety of conditions in a large number of countries is illustrated. HUI provides comprehensive, reliable, responsive and valid measures of health status and HRQL for subjects in clinical studies. Utility scores of overall HRQL for patients are also used in cost-utility and cost-effectiveness analyses. Population norm data are available from numerous large general population surveys. The widespread use of HUI facilitates the interpretation of results and permits comparisons of disease and treatment outcomes, and comparisons of long-term sequelae at the local, national and international levels.

Childhood morbidity after severe traumatic brain injury: Increased detection with the Multiattribute Health Status Classification.

OBJECTIVES: Study 1: To determine the interrater agreement on the Multiattribute Health Status Classification (MAHSC) for brain-injured children. Study 2: To determine the outcome of severe childhood traumatic brain injury (TBI) by comparing three measures: MAHSC, Functional Independence Measures (FIM/WeeFIM), and the Glasgow Outcome Scale. Designs: Study 1: Clinic recruitment of parents of patients. Study 2: Surveillance follow-up of an inception cohort. Settings: Study 1: The Brain Injury Clinic, Glenrose Rehabilitation Hospital, Edmonton, Canada. Study 2: Pediatric Intensive Care Unit, University of Alberta Hospital. PATIENTS: Study 1: Two physiatrists and parents of 50 children (5-18 yrs, 54% boys) independently completed the survey. Study 2: From a cohort of 51 patients (3-17 yrs, 69% boys, 6 deaths) consecutively admitted to the pediatric intensive care unit in 1995 and 1996 with severe TBI (Glasgow Coma Score </= 8 within the first 24 hrs postinjury), parents of all survivors (71% boys) completed outcome measures at 6-12 months postinjury. MEASUREMENTS AND MAIN RESULTS: Study 1: The interrater agreement exceeded 70% for attributes of sensation, mobility, cognition, self-care, and general health. Study 2: Of 45 survivors, 34 (76%) had a "good recovery" on the Glasgow Outcome Scale, 16 (36%) had normal scores on the FIM/WeeFIM, and only 8 (18%) had normal attributes on the MAHSC. Correlations of measures were Glasgow Outcome Scale and MAHSC, -.73; Glasgow Outcome Scale and FIM/WeeFIM,.64; and MAHSC and FIM/WeeFIM, -.63. Sensitivity and specificity from acute injury predictors for the Glasgow Outcome Scale were 88% and 91%, respectively; for MAHSC 75% and 70%; and for FIM/WeeFIM 63% and 75%. CONCLUSIONS: The MAHSC has a high interrater reliability after brain injury and is a useful parent-report surveillance tool to audit outcome after severe TBI. It identified problems not addressed by the Glasgow Outcome Scale or FIM/WeeFIM. Most children with severe TBI have adverse outcomes.

Health-related quality of life in survivors of Wilms' tumor and advanced neuroblastoma: aA cross-sectional study.

In pediatric oncology, Wilms' tumor and advanced neuroblastoma represent opposite ends of the spectra of survival probability and therapeutic intensity. Consequently, it was envisaged that survivors of Wilms' tumor would enjoy better health status and health-related quality of life (HRQL) than survivors of advanced neuroblastoma. Health status questionnaires were sent to the parents of all eligible children and to the children themselves if they were > or = 8 years of age. Responses were received from 84% of 93 eligible families. Responses were converted by established algorithms into levels of two multiattribute health status classification systems known as Health Utilities Index Mark 2 and Mark 3. These systems are linked to measures of preference, in the form of multiattribute utility functions, which provide scores of morbidity for single-attribute levels and of global HRQL for comprehensive health states. A greater burden of morbidity was identified in the survivors of advanced neuroblastoma than in survivors of Wilms' tumor based on the assessments of the parents of these children. In particular, survivors of advanced neuroblastoma exhibited deficits in hearing and speech. It is possible that this morbidity burden reflects the prevalent use of platinum compounds (causing ototoxicity) in this group. Within parent-child dyads there was a high level of percentage agreement on responses in all attributes except cognition. Extension of this study to a larger sample size of patients will provide clarification of these observations.

The Effect of Adding a Cognitive Dimension to the EuroQol Multiattribute Health-Status Classification System

A methodological study was conducted to examine the effect of extending a frequently used simple multiattribute health-status classification system by adding a cognitive dimension. The EQ-5D questionnaire is a generic instrument to value health, developed by the EuroQol Group. The EQ-5D defines health according to five dimensions: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression. We defined 18 different health states according to the standard EQ-5D classification. A second set of health states was constructed similar to the first, except for the addition of a cognitive dimension (EQ-5D+C). Valuations of both sets of health states were statistically analyzed to detect the effect of the additional dimension. The cognitive dimension generated systematically different values compared with the standard EQ-5D version, whereas the content validity improved. Both systems evoked equally reliable values. Analyses showed that a simple additive model to predict summary values for health states was not optimal for both systems. Although there is a current lack of consensus regarding the domains that are selected to represent health status, this study has shown the importance of considering the inclusion of a cognitive domain.

Health-related quality of life in survivors of tumours of the central nervous system in childhood—a preference-based approach to measurement in a cross-sectional study

There is an evident need to measure the comprehensive burden of morbidity experienced by survivors of brain tumours in childhood. To this end, a questionnaire based on the Health Utilities Index mark 2 (HUI2) and mark 3 (HUI3) systems was completed independently for a cohort of such children by their parents, by a nurse, by physicians and by a selected group of the children themselves. Each of the HUI2 and HUI3 systems consists of a multi-attribute health status classification scheme linked to a preference function which provides utility scores for levels within single attributes (domains of health) and for global health states. All eligible families (n=44) participated. Even cognitively impaired children of at least 9.5 years of age could complete the questionnaire. The greatest burden of morbidity, occurring in two-thirds of children, was in the attribute of cognition. Surprisingly, almost one-third of children experienced pain. Global health status was lowest in children who underwent radiotherapy before the age of 5 years and the corresponding utility scores were related inversely to the volume irradiated. Children with demonstrable disease had lower scores than those in whom disease was not evident. There was a high level of agreement (intraclass correlation coefficients >0.5) on formal assessment of inter-rater reliability for global health-related quality of life utility scores. The usefulness of measures of health status and health-related quality of life, in children surviving brain tumours, has been demonstrated by this study.

Assessment of health status and health-related quality of life in survivors of Hodgkin's disease in childhood

Although the great majority of children with Hodgkin's disease survive with modern treatment strategies, the list of late sequelae is long, yet there is no published information on the comprehensive health status and health-related quality of life (HRQL) in this population. In the experience of a single institution, survivors of Hodgkin's disease in childhood were invited to self-report on their health status using a 15-item questionnaire connected to the Health Utilities Index, a series of multi-attribute health status classification systems that, in turn, are linked to preference functions which provide single-attribute and global utility scores for HRQL. The mean global utility score was 0.85 (on a 0 = dead to 1. 0 = perfect health scale), a figure less than that in survivors of acute lymphoblastic leukemia (ALL) but comparable to that in survivors of brain tumors (0.84) or extremely low birthweight (ELBW 0.82). The burden of morbidity is emphasized by the ratio of the numbers of health states per patient:0.67 for survivors of Hodgkin's disease, 0.66 for survivors of brain tumors, 0.39 for survivors of ELBW, 0.47 for survivors of high-risk ALL and 0.28 for survivors of standard-risk ALL. In Hodgkin's disease survivors, the attributes affected most commonly and severely were pain, cognition and emotion. This experience demands exploration of the health status and HRQL in a much larger cohort of such survivors, perhaps in the context of co-operative group studies.

44 HEALTH STATUS IN PEDIATRIC SURVIVORS OF ORTHOTOPIC LIVER TRANSPLANTATION (OLT).

The goal of this study was to describe the health-related quality of life (HRQL) and determine the degree of ongoing medical disability in pediatric patients who have recovered from OLT. Methods: The study population included surviving children receiving their most recent OLT between 8/1/90 and 8/1/93. Assessment was conducted by parental phone interview using a modification of the Health Utilities Index Mark II (HUI2) which includes two components; a multiattribute health status classification and a preference based utility function. This classification scores function in six categories: sensation, mobility, emotion, cognition, self-care and pain. Follow-up records were reviewed for disease specific disability (DSD), which assesses OLT specific status including growth, protein synthesis, cholestasis, infections, portal hypertension and hospitalizations. Results: Of 63 potential participants, 53 (84%) were available and agreed to participate. Median age at study was 4.2 yrs. The majority of children had normal scores for sensation (62%), mobility (85%), cognition (79%) and self-care (92%). 6 children (11%) were normal in all categories, 27 (51%) were normal in all categories excluding emotion and pain. Most parents reported functional limitations in emotional stress and pain, but the abnormalities were mild in all but 8 children. The mean calculated utility score was 0.86±0.13 SD, with 1.00 being perfect health and 0.00 being death. 57% of children had a utility score of at least 0.90. 83% of children had some degree of medical disability, 67% had normal or minimally elevated and 33% had moderately elevated DSD scores. Conclusions: The majority of children surviving at least two years after OLT are functioning at an age-appropriate level. Most have minimal disease specific disability. Utility scores for these children suggest a good HRQL.

“PLAY IT AGAIN SAM”: COMPARISON OF TEENAGERS' VALUATION OF SELF-REPORTED HEALTH STATUS VERSUS A HYPOTHETICAL SCENARIO (“SAM”) OF SAME HEALTH STATE. † 1653

Background: There is some evidence in the literature that valuation of personal health status by patients may be higher than ratings provided for the same health state by other respondents. However, it is not known if the patients would provide similar ratings if their personal health state were presented as a hypothetical scenario. Objectives: To determine if there are any differences in teenagers valuation of their health-related quality of life (HRQL) based on self-report of their subjectively-defined health status (SDHS), versus the ratings provided for“Sam”, which was an objective description of their personal multi-attribute health status written as if it were a hypothetical scenario.Design: Health status measures of teens' own health were obtained by professional interviewers using a multi-attribute health status (HUI2) classification system. To elicit preferences, we utilized the visual analogue scaling (Feeling Thermometer) which ranks health states under conditions of certainty on a scale of 0 to 100. The respondents were asked to rank their self-reported SDHS and “Sam” (in addition to 4 other hypothetical scenarios of varying severity). Participants: 107 extremely low birthweight (ELBW) survivors and 108 controls (C) between 12 and 16 years of age. Neurosensory impairments were present in 24% ELBW and 2% C.Results: 69% of ELBW and 56% of C rated their own SDHS equal to or higher than “Sam” (p = 0.06). The mean value score of ELBW teenagers for SDHS HRQL was significantly higher than that of“Sam”, the scenario about themselves (89 ± 15 vs. 83± 20, p = 0.001). The differences reported by the C group were in the same direction, although non-significant (91 ± 9 vs 89 ± 15, p = 0.10). Conclusions: Overall, a modest proportion of both cohorts rated their own HRQL equal to or higher than “Sam”, suggesting that personal experience of living in a particular health state is valued more highly than when it is imaginary. Whether the wider discrepancy between HRQL rating of SDHS and “Sam” in ELBW adolescents is due, in part, to a broader range of impairments, or a personal inability to appreciate their own limitations, is not clear. It is possible that ELBW teens value their own HRQL higher than “Sam” due to some undescribed qualities they perceive in themselves. To our knowledge comparisons like these have not been reported before.

Reliability and validity of a comprehensive health status measure in a heterogeneous population of children admitted to intensive care

This study assesses psychometric and empirical characteristics of the Multi-Attribute Health Status Classification (MAHSC) in a heterogeneous population of children admitted to intensive care. The MAHSC encompasses six health domains (sensation, mobility, emotion, cognition, self-care, and pain), each with four or five hierarchic levels of dysfunction. The health status of 254 consecutively admitted children was determined independently by 3 different observers (parents, attending clinicians, and investigators). The proportion of children with health impairment varied between 13% (in sensation) and 58.7% (in mobility). Interrater reliability of domain scores, as analyzed by Spearman's rank, Pearson product moment, and intraclass correlations, was high, generally exceeding 0.80 for all pairs of observers. Intraclass correlation appeared to be highest in nonsurgical patients (range, 0.89–0.98) and lowest in cardiovascular surgery patients (range, 0.50–0.84). The validity of the classification was supported by (1) the presence of expected specific health status impairment in patients suffering from diseases with an acknowledged impact on specific domains and (2) the presence of a relation between health impairment and medical consumption. The absence of a relation between the average (chronic) health status preceding admission and the acute risk of mortality precipitating the admission confirmed their independent prominence in outcome assessment. We conclude that the MAHSC is a feasible, reliable, and valid measure for outcome assessment in a heterogeneous population of children within a demanding clinical situation. Excellent interrater reliability allows the use of various raters, adjusted to practical requirements.