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Objectives: Health Utilities Preschool (HuPS) was developed to fill the need for a generic preference-based measure (GPM) applicable in early childhood. A GPM has all the properties for higher-order summary measures, such as quality-adjusted life-years, required to inform important policy decisions regarding health and healthcare services., Methods: Development was in accordance with published standards for a GPM, statistical procedures, and modeling. HuPS incorporates key components of 2 existing measurement systems: Health Status Classification System for Preschool Children and Health Utilities Index Mark 3 (HUI3). The study included a series of 4 measurement surveys: definitional, adaptational, quantificational, and evaluational health-related quality of life (HRQL). HuPS measurements were evaluated for reliability, validity, interpretability, and acceptability., Results: Definitional measurements identified 8 Health Status Classification System for Preschool Children attributes in common with HUI3 (vision, hearing, speech, ambulation, dexterity, emotion, cognition, and pain and discomfort), making the HUI3 scoring equation commensurate with HuPS health states. Adaptational measurements informed the content of attribute-level descriptions (n = 35). Quantificational measurements determined level scoring coefficients. HRQL scoring inter-rater reliability (intraclass correlation coefficient = 0.79) was excellent. Continuity of HRQL scoring with HUI3 was reliable (intraclass correlation coefficient = 0.80, P < .001) and valid (mean absolute difference = 0.016, P = .396)., Conclusions: HuPS is an acceptable, reliable, and valid GPM. HRQL scoring is continuous with HUI3. Continuity expands the applicability of GPM (HUI3) scoring to include subjects as young as 2 years of age. Widespread applications of HuPS would inform important health policy and management decisions as HUI3 does for older subjects., (Copyright © 2022 International Society for Pharmacoeconomics and Outcomes Research, Inc. Published by Elsevier Inc. All rights reserved.)

Health-related quality of life (HRQL) improved progressively during therapy and beyond in children treated for acute lymphoblastic leukemia on the Dana-Farber Cancer Institute (DFCI) 95-01 protocol. This study aimed to validate that trajectory in a successor study (DFCI 00-01) and to compare the HRQL of patients in the 2 studies. Children aged above 5 years were assessed during each phase of treatment (N=4) and 2 years after completion of therapy. Health status and HRQL were measured using Health Utilities Index (HUI) instruments, HUI2 and HUI3. Quality-adjusted life years (QALYs) were calculated and compared with the general population, and patients treated on DFCI 95-01. Over 5 intervals and 758 HUI assessments, mean HRQL increased progressively from remission induction to the time after treatment (P<0.001). During intensification, high-risk patients had lower HRQL than standard-risk patients (P<0.001). During remission induction, patients on DFCI 95-01 had lower HRQL than patients on DFCI 00-01. Patients on DFCI 00-01 had ~0.2 and 0.3 fewer QALYs than controls, measured by HUI2 and HUI3, respectively. QALYs for DFCI 00-01 patients during treatment were similar to those for DFCI 95-01 patients. The trajectory of improvement in HRQL during the treatment of acute lymphoblastic leukemia in children was confirmed.

Background: Multi-attribute generic preference-based measures of health-related quality of life are used as comprehensive outcome measures. Typically preferences for health states defined by these systems are elicited from a representative sample of the general population. An important element in that elicitation process is the information that respondents were instructed to consider in providing their responses., Methods: A random sample of community-dwelling respondents in Canada was surveyed in face-to-face interviews. Respondents provided preference scores for selected Health Utilities Index Mark 3 (HUI3) health states. Respondents also answered questions about the most important attributes and the importance of various impacts of the health states in providing their preference scores., Results: Fifty per cent of respondents reported that they focussed on two, and 21% on three, attributes of the eight HUI3 attributes. Each of the eight attributes was identified as important; pain (49%), vision (37%), cognition (34%), emotion (28%), and ambulation (28%) were the most important. The null hypothesis that all of the attributes were equally important was rejected (p < 0.001). With respect to the impacts, 89% of respondents indicated that the ability to take care of oneself was quite or very important; similarly 76% reported the same for impact on family life, 69% for impact on the happiness of others, 61% for the impact on their ability to work, and 42% for the impact on their leisure activities. The null hypothesis that all of the impacts were equally important was rejected (p < 0.001)., Conclusions: In providing preference scores for HUI3 health states, respondents thoughtfully examined the implications of the health states for their ability to live, work, socialize, and function.

There is limited experience with patient-reported measurements of health status and health-related quality of life (HRQL) in survivors of cancer in childhood in low-income countries. The purposes of this study were to collect such measurements in Brazil, to test hypotheses about differences among diagnostic groups, and to compare results with those from other countries. Survivors were eligible if diagnosed with cancer in childhood, attending a long-term follow-up clinic, cancer free, literate, and at least 13 years of age. Health status measurements were collected using a Brazilian Portuguese Health Utilities Index questionnaire. Questionnaire responses were converted to scores for morbidity in individual health attributes and for overall HRQL. More than one-third of the 138 consecutive survivors who participated reported some cognitive disability or pain. Approximately one-quarter reported problems with vision, speech, or emotion. Mean HRQL was similar (P>0.05) among countries for survivors of acute lymphoblastic leukemia and Hodgkin disease. The results support the hypotheses that Brazilian survivors of cancer in childhood experience a wide range of disabilities and impaired HRQL, are similar to those in other countries, and should be assessed in long-term follow-up clinics.

Background: The incidence of cancer in children in Uruguay is similar to that in industrialized societies but the survival rate is half as great. This study assesses another important measure of treatment effectiveness: the health-related quality of life (HRQL) of survivors., Methods: All new patients diagnosed in a 3-year period were eligible if free of disease for at least 2 years after therapy and at least 7 years of age at the time of study. A sample of convenient subjects for comparison was obtained from schools and clinics for well children. During a 7-month period, Spanish language interviewer-administered questionnaires were used to collect Health Utilities Index data from survivors and the comparison group (self-reports), and from proxies (parents, physicians, and teachers)., Results: Of 113 eligible survivors, 95 (84%) participated together with 96 "control" subjects. Control subjects have a higher mean HRQL utility score than survivors (P < 0.001). The mean score for survivors of acute lymphoblastic leukemia (ALL): 0.72 (n = 49) is higher than the score for survivors of brain tumors: 0.60 (n = 20), as expected. Inter-rater agreement is highest between survivors and parents, and lowest between controls and physicians or teachers., Conclusions: The burden of morbidity in survivors of childhood cancer in Uruguay is considerable and greater than that in a comparative group of healthy children. Survivors of ALL have better HRQL than survivors of brain tumors, mirroring experience elsewhere. The level of inter-rater agreement is related to the degree of familiarity of the pair-members of respondents with each other., ((c) 2008 Wiley-Liss, Inc.)

Purpose: The intent of this study was to determine whether baseline measures of functional capacity and performance could be used to predict survival in adults following the diagnosis of brain tumors., Patients and Methods: Comprehensive health status and health-related quality of life (HRQL) were measured using the Health Utilities Index (HUI; McMaster University, Hamilton, Canada) system by a self-assessment questionnaire in a survey of 100 consecutive patients. The Karnofsky Performance Score (KPS) and Folstein's Mini-Mental State Examination (MMSE) scores were measured by a physician blinded to the HUI results. The patients were observed for up to 5 years to recorded dates of death., Results: An HUI questionnaire was completed for 93% of the patients and 69% died within 5 years of assessment. The HUI revealed a burden of morbidity and complexity of disability that far exceeded that reported for the general population. KPS and MMSE correlated strongly with each other (r = 0.52; P < .001). A decrease of 0.1 units in HUI Mark 2 (HUI2) self-care single-attribute utility score was associated with an increased hazard of death of 30% (P = .023) for patients with low-grade tumors (n=25). For patients with high-grade tumors (n=56), a 10 unit decrease in the KPS, a 5 unit decrease in MMSE, and a 0.1 decrease in HUI Mark 3 (HUI3) speech and dexterity single-attribute scores were associated with an increased hazard of death of 20% (P = .022), 26% (P = .015), 36% (P = .021), and 18% (P = .035), respectively., Conclusion: Scores derived from the measurement of HRQL following diagnosis can predict survival in adults with brain tumors.

Purpose: Adolescent survivors of cancer in childhood face particular challenges due to their maturational trajectory, including psychosocial adjustments, self-help skills, intellectual functioning and socialization. To better understand these, we assessed the health status and health-related quality of life (HRQL) in a 20-year cohort of such survivors in a single institution., Methods: Health status and HRQL were measured with a self-complete questionnaire from the Health Utilities Index (HUI) family of multi-attribute, preference-based instruments that provide utility scores for single attributes and overall HRQL., Results: Eighty-four (42 males, 42 females) of 129 eligible subjects (65%) participated. More than 80% of the respondents reported some form of morbidity. Overall HRQL utility scores were lower for both the males and females than for corresponding members of the Canadian general population. Female survivors self-reported a significantly greater burden of morbidity (mean overall HUI2/HUI3 scores: .83/.73 vs. .90/.84 for males, p < .02), which was most evident in the attributes of emotion and cognition., Conclusions: The majority of adolescent survivors of cancer in childhood carry a morbidity burden into their teen and young adult years. These findings may guide the support required by this population.

We assessed inter-observer agreement on a new comprehensive health status classification system for preschool children (CHSCS-PS). Prospective assessments of children aged 2-4.9 years at the time of diagnosis of neuroblastoma (stages 3-4, excluding 4S) or Wilms' tumor (stages II-V) were collected independently from a parent and nurse by self-report during therapy. Responses were used to determine functional status on 10 health domains, as well as an overall disability score. Inter-observer agreement was evaluated by a kappa statistic for agreement about levels within individual domains, and by an intraclass correlation coefficient (ICC) for agreement of overall disability scores. Twenty-four parent/nurse pairs of assessments were collected. Agreement was almost perfect for mobility and self-care, substantial for emotion and pain, and slight for speech. There was high percent agreement for vision, hearing, dexterity, learning and remembering, and thinking and problem solving, but insufficient variability in responses to calculate a kappa statistic. The ICC for overall disability scores between observers was 0.86, indicating strong agreement. Given the need for, and paucity of, instruments for the measurement of health-related quality of life in very young children, these results strongly support further evaluation of the CHSCS-PS.

Background: The purpose of this study was to describe the health status experienced by young children during various phases of therapy for advanced neuroblastoma., Methods: Nineteen patients aged 2.00-4.99 years at the time of diagnosis of neuroblastoma (stages 3 or 4) who received active therapy between 1996 and 2000 were enrolled on the study. Their parents provided proxy assessments of their health status at a maximum of 10 assessment points during therapy using the Comprehensive Health Status Classification System for Pre-school Children (CHSCS-PS), which assesses level of function on 10 separate health domains., Results: Eighty-six assessment questionnaires were completed. Maximum morbidity was reported immediately following diagnosis and in the 2-3 weeks following bone marrow transplantation. The greatest morbidity was observed in the pain, self-care, mobility, and emotion domains., Conclusions: In addition to facing a high risk of mortality, young children being treated for advanced neuroblastoma also experience considerable morbidity., ((c) 2004 Wiley-Liss, Inc.)

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.

Von Willebrand disease (VWD) is the commonest inherited disorder of hemostasis and the majority of women with this disorder experience excessive uterine bleeding. Yet very little information is available on the health-related quality of life (HRQL) in individuals with VWD. To test the a priori hypotheses that these individuals will have poorer HRQL than members of the general population, and that this burden of morbidity will correlate with the severity of VWD, a cross-sectional study was undertaken of a population-based cohort in a regional hemophilia program in Ontario, Canada. A survey was made of individuals over 13 years of age with VWD who self-reported their health status using a standard 15 item questionnaire. The responses were converted to levels in the Health Utilities Index Mark 2 (HUI2) and Mark 3 (HUI3) health status classification systems to form multi-element vectors from which single attribute morbidity and overall HRQL utility scores were determined. As a group, individuals with VWD were shown to have poorer HRQL than members of the general population and those with Type 2 disease carried a greater burden of overall morbidity than those with Type 1 disorder. Morbidity was evident mainly in the attributes of emotion, cognition with pain. A striking difference was observed between males and females, with the latter having overall HRQL utility scores similar to those reported previously for HIV positive, severe hemophiliacs. It is possible that this remarkable burden of morbidity reflects chronic iron deficiency associated with menorrhagia. A national study has been proposed to address this likelihood as it offers an opportunity for effective therapeutic intervention (iron supplementation) with a concomitant gain in health status and HRQL., (Copyright 2003 Wiley-Liss, Inc.)

The hemophilias are a group of disorders associated with a chronic burden of morbidity and early mortality. Improvements in these adverse features have been achieved by the use of clotting factor concentrates within comprehensive centers of specialized care providing home infusion programs. Offsetting effects from transfusion-transmitted hepatitis and HIV infection are in recent decline. The net impact of these changes merits assessment. To test the a priori hypotheses that increasing severity of factor VIII deficiency would be associated with an increasing burden or morbidity and that hepatitis and HIV positivity would impair health status further, a cross-sectional study of a population-based cohort was undertaken in a regional hemophilia program in Ontario, Canada. A survey was made of mild, moderate, and severe hemophiliacs over 13 years of age who self-reported their health status using a standard 15-item questionnaire. The responses were converted to levels in the Health Utilities Index Mark 2 (HUI2) and Mark 3 (HUI3) health status classification systems to form multi-element vectors from which single-attribute morbidity and overall health-related quality of life utility scores were determined. The burden of morbidity was greater in hemophiliacs than in the general population and correlated with the category of disease (mild < moderate < severe). Hepatitis and HIV positivity conferred additional burdens of morbidity, which were mainly in the attributes of mobility (HUI2), ambulation (HUI3), and pain (HUI2/3), all of these differences reaching levels of statistical significance. Despite demonstrable improvements in the safety, effectiveness, and utilization of clotting factor concentrates, hemophiliacs continue to experience an important burden of morbidity. Measurement of this burden, as reported here, provides a basis for future economic evaluation of the costs and consequences of health care interventions provided to this population., (Copyright 2002 Wiley-Liss, Inc.)

Background: The Health Utilities Index Mark 3 (HUI3) is a generic multiattribute preference-based measure of health status and health-related quality of life that is widely used as an outcome measure in clinical studies, in population health surveys, in the estimation of quality-adjusted life years, and in economic evaluations. HUI3 consists of eight attributes (or dimensions) of health status: vision, hearing, speech, ambulation, dexterity, emotion, cognition, and pain with 5 or 6 levels per attribute, varying from highly impaired to normal., Objectives: The objectives are to present a multiattribute utility function and eight single-attribute utility functions for the HUI3 system based on community preferences., Study Design: Two preference surveys were conducted. One, the modeling survey, collected preference scores for the estimation of the utility functions. The other, the direct survey, provided independent scores to assess the predictive validity of the utility functions., Measures: Preference measures included value scores obtained on the Feeling Thermometer and standard gamble utility scores obtained using the Chance Board., Respondents: A random sample of the general population (> or =16 years of age) in Hamilton, Ontario, Canada., Results: Estimates were obtained for eight single-attribute utility functions and an overall multiattribute utility function. The intraclass correlation coefficient between directly measured utility scores and scores generated by the multiattribute function for 73 health states was 0.88., Conclusions: The HUI3 scoring function has strong theoretical and empirical foundations. It performs well in predicting directly measured scores. The HUI3 system provides a practical way to obtain utility scores based on community preferences.

Cancer is an increasing cause of disease-related death in childhood within developing countries, where the great majority of the world's children reside. The improving prospects for survival in such children, and the corresponding challenge of undertaking economic evaluations of related health interventions, provide a stimulus to study the health-status and health-related quality of life in survivors of cancer in childhood in Latin America. Spanish language versions of questionnaires for proxy assessors, based on the Health Utilities Index (HUI), were used to elicit responses from parents and physicians. The HUI is a family of multi-attribute, generic, preference-linked measures of health status and health-related quality of life that are reliable, responsive and valid, and have been used previously in pediatric oncology. Valid responses were received from 178 parents and 144 physicians in 6 centres in 4 countries (Cuba, Honduras, Colombia and Uruguay). For children with acute lymphoblastic leukemia the major morbidity burdens were in the attributes of emotion, cognition and pain. The overall burden of morbidity was greater in children with non-Hodgkin's lymphoma. In survivors of Hodgkin's disease and Wilms' tumor the attributes most affected were emotion and pain. In general, there was considerable agreement between the assessments provided independently by parents and physicians. This study demonstrates the feasibility of conducting such measurements in developing countries, and reveals similarities in health status and health-related quality of life to comparable populations in more privileged societies.

This paper reviews the Health Utilities Index (HUI) systems as means to describe health status and obtain utility scores reflecting health-related quality of life (HRQoL). The HUI Mark 2 (HUI2) and Mark 3 (HUI3) classification and scoring systems are described. The methods used to estimate multiattribute utility functions for HUI2 and HUI3 are reviewed. The use of HUI in clinical studies for a wide variety of conditions in a large number of countries is illustrated. HUI provides a comprehensive description of the health status of subjects in clinical studies. HUI has been shown to be a reliable, responsive and valid measure in a wide variety of clinical studies. Utility scores provide an overall assessment of the HRQoL of patients. Utility scores are also useful in cost-utility analyses and related studies. General population norm data are available. The widespread use of HUI facilitates the interpretation of results and permits comparisons. HUI is a useful tool for assessing health status and HRQoL in clinical studies.

Objectives: To compare the health status and health-related quality of life of teen-aged children who were extremely low birth weight (ELBW) with matched controls from the perspective of their parents., Study Design: Geographically defined cohort; longitudinal follow-up; cross-sectional interviews., Participants: parents of 149/169 (88%) ELBW children between 12 and 16 years of age (including 41 children with neurosensory impairments) and 126/145 (87%) parents of term controls. Health status of the teenagers was classified according to the 6 attributes of the Health Utilities Index Mark 2, based on information obtained during parent interviews. Parents were asked to imagine themselves living in their own child's health state and 4 preselected hypothetical health states when providing directly measured standard gamble utility scores., Results: Parents of ELBW children reported a higher frequency and more complex functional limitations than parents of controls for their own children's health status. Also, the mean utilities were lower (ELBW =.91 vs controls =. 97) and the variability in their scores was greater. There were no differences in the valuation of the hypothetical health states provided by parents of ELBW and control children., Conclusions: ELBW children were reported to have a greater burden of disability than were control children based on parental descriptions. Nonetheless, parents of ELBW children, on average, rated the health-related quality of life of their children fairly high. Thus, differences in reported functional status are not necessarily associated with lower utility scores.

Background: The Health Utilities Index Mark 3 (HUI3) is a comprehensive, compact health status classification and health state preference system. The HUI3 system has been included in 4 Canadian population health surveys and numerous clinical trials., Objectives: To evaluate the construct validity of the HUI3 for the measurement of health-related quality of life (HRQL) and attribute-specific morbidity in respondents to the 1990 Ontario Health Survey reported to have arthritis or stroke. The authors assessed (1) whether those with stroke, arthritis, and both conditions had lower HRQL scores than those with neither condition and (2) whether HUI3 detects morbidity in specific health attributes affected by arthritis and stroke. Stroke (but not arthritis) were expected to affect speech and cognition; arthritis (but not stroke) to affect pain; both to affect mobility, dexterity, and emotion; and neither to affect vision and hearing., Research Design: Linear regression models of HRQL and attribute-specific utilities were estimated as a function of 3 indicator variables of health problem (stroke only, arthritis only, both) and variables included to reduce confounding., Results: Subjects with stroke, arthritis, and both conditions had substantially lower HRQL than those with neither condition. Stroke subjects had greater morbidity in speech and cognition than arthritis subjects; somewhat surprisingly, pain morbidity was only slightly higher among arthritis subjects; neither condition affected vision or hearing. These associations were robust to various model specifications., Conclusions: The HUI3 system appears valid for measuring health status and HRQL for stroke and arthritis in the context of a noninstitutionalized population health survey.

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., (Copyright 1999 Wiley-Liss, Inc.)

Quality-of-life assessment is being used increasingly in clinical research. This is true particularly in the case of survivors of cancer in childhood, where improving survival rates have raised concern regarding the long-term effects of medical cure. Health-status assessment and quality-of-life instruments have been developed for the most part in the English language, thus necessitating their translation and cultural adaptation for use in non-English-speaking countries. Our purpose was to develop a set of Spanish-language questionnaires for application with a population of children with cancer in a tertiary-care center in Buenos Aires, Argentina. The Health Utilities Index (HUI), a conceptual framework for assessing health status, was chosen for this study. Three distinct questionnaires, based on the HUI, were used: a self-completed one for health professionals and teachers (15Q) to report assessments of children and 2 interviewer-administered ones, for child survivors (42Q) to report assessments about their own health status and parents (45Q) to report assessments about their children's health status. The original translations and reviews were accomplished with direct oversight by members of the HUI Group, to ensure conceptual equivalence. The instruments were then tested in Buenos Aires by application to staff of the hematology-oncology service, childhood cancer patients and the parents of childhood cancer patients. Several modifications were made based on these tests. We concluded that the translation and cultural adaptation of these instruments was adequate for use with the groups tested in a pilot survey of survivors of childhood cancer in Argentina., (Copyright 1999 Wiley-Liss, Inc.)

A large amount of information in the 1990 Ontario Health Survey (OHS) was collected from proxy respondents using questions administered in face-to-face interviews. Can this type of information represent candid self-reported measures of health status? Inter-rater agreement was assessed using Cohen's kappa statistic for responses to questions that were answered both by individuals about themselves and by proxies on their behalf. Intra-rater agreement, assessing the effect of mode of survey administration (in-person interviews versus self-completed written questionnaires) on the responses, was also investigated using the kappa statistic. We conclude that: (1) proxy responses in the OHS for impairments of emotion and pain are not reliable indicators of self-response (kappa < 0.32) because proxy respondents consistently under-report the burden of morbidity; (2) levels of morbidity reported by subjects to interviewer-administered questionnaires may underestimate morbidity, relative to morbidity reported by subjects using self-administered questionnaires completed in privacy. We also hypothesize that the relative magnitudes of inaccuracy introduced by interviewer administration relative to proxy reporting depends on the phenomenon being measured. When assessing pain, mode of administration is quantitatively a more important source of disagreement than type of respondent.

Objectives: To estimate and to compare the self-assessed health status and health-related quality of life of extremely low-birth-weight (ELBW) and control infants during adolescence., Design: Prospective, observational study of an inception cohort with a concurrent control group., Setting: Geographically defined region in central-west Ontario., Participants: We interviewed 141 (83 percent) of 169 ELBW survivors born between 1977 and 1982 and 124 (86 percent) of 145 controls aged between 12 and 16 years. In addition, proxy responses obtained from parents were used for 9 severely impaired teenagers., Main Outcome Measures: Assessments of health status (6 attributes), measured with the Health Utilities Index Mark 2 classification system, and health-related quality of life (utilities), quantified with 2 preference measurement techniques, were used to quantify each participants self-reported, subjectively defined health state and 4 preselected hypothetical health states., Results: Adolescents who were ELBW infants reported a higher number of attributes affected, as well as more complex and severe limitations in cognition, sensation, self-care, and pain, compared with controls. Statistically significant differences for the teenagers' health-related quality of life were noted between ELBW and control teenagers in the mean utility scores (0.87 +/- 0.26 vs 0.93 +/- 0.11; P=.02 on a conventional scale where O=dead and 1.00=perfect health). However, a similar percentage of ELBW and control teenagers (71 percent vs 73 percent) gave utility ratings of more than 0.95 for their health status., Conclusions: Direct measures of self-reported health status and utility scores indicated that, as a cohort, adolescents who were ELBW infants suffer from a greater burden of morbidity and rate their health-related quality of life as significantly lower than control teenagers. Nevertheless, the vast majority of ELBW respondents view their health-related quality of life as quite satisfactory and are difficult to distinguish from controls.

The Health Utilities Index Mark 2 (HUI:2) is a generic multiattribute, preference-based system for assessing health-related quality of life. Health Utilities Index Mark 2 consists of two components: a seven-attribute health status classification system and a scoring formula. The seven attributes are sensation, mobility, emotion, cognition, self-care, pain, and fertility. A random sample of general population parents were interviewed to determine cardinal preferences for the health states in the system. The health states were defined as lasting for a 60-year lifetime, starting at age 10. Values were measured using visual analogue scaling. Utilities were measured using a standard gamble technique. A scoring formula is provided, based on a multiplicative multiattribute utility function from the responses of 194 subjects. The utility scores are death-anchored (death = 0.0) and form an interval scale. Health Utilities Index Mark 2 and its utility scores can be useful to other researchers in a wide variety of settings who wish to document health status and assign preference scores.

Multi-attribute utility theory, an extension of conventional utility theory, can be applied to model preference scores for health states defined by multi-attribute health status classification systems. The type of preference independence among the attributes determines the type of preference function required: additive, multiplicative or multilinear. In addition, the type of measurement instrument used determines the type of preference score obtained: value or utility. Multi-attribute utility theory has been applied to 2 recently developed multi-attribute health status classification systems, the Health Utilities Index (HUI) Mark II and Mark III systems. Results are presented for the Mark II system, and ongoing research is described for the Mark III system. The theory is also discussed in the context of other well known multi-attribute systems. The HUI system is an efficient method of determining a general public-based utility score for a specified health outcome or for the health status of an individual. In clinical populations, the scores can be used to provide a single summary measure of health-related quality of life. In cost-utility analyses, the scores can be used as quality weights for calculating quality-adjusted life years. In general populations, the measure can be used as quality weights for determining population health expectancy.

In this article, multi-attribute approaches to the assessment of health status are reviewed with a special focus on 2 recently developed systems, the Health Utilities Index (HUI) Mark II and Mark III systems. The Mark II system consists of 7 attributes: sensation, mobility, emotion, cognition, self-care, pain and fertility. The Mark III system contains 8 attributes: vision, hearing, speech, ambulation, dexterity, emotion, cognition and pain. Each attribute consists of multiple levels of functioning. A combination of levels across the attributes constitutes a health state. The HUI systems are deliberately focused on the fundamental core attributes of health status, and on the capacity of individuals to function with respect to these attributes. Thus, the measure obtained constitutes a pure description of health status, uncontaminated by differential opportunity or preference. Multi-attribute systems provide a compact but comprehensive framework for describing health status for use in population health and programme evaluation studies. An important advantage of such systems is their ability to simultaneously provide detail on an attribute-by-attribute basis and to capture combinations of deficits among attributes. An additional advantage is their compatibility with multi-attribute preference functions, which provide a method for computing a summary health-related quality-of-life score for each health state.

Objective: To apply a multiattribute health status (MAHS) classification system to data available on two cohorts of school-aged children to describe several dimensions of health simultaneously. The MAHS system describes both the type and severity of functional limitations according to seven attributes: sensation, mobility, emotion, cognition, self-care, pain, and fertility (fertility not applicable in this study), with four or five levels of function within each attribute., Design: The MAHS system was applied retrospectively to clinical and psychometric data collected prospectively at age 8 years. MAHS application was by selection of items from the database and development of computer-assisted algorithms to assign functional levels within each attribute., Setting: Geographically defined region in central-west Ontario, Canada., Participants: One hundred fifty-six extremely low birth weight (ELBW) survivors born between 1977 and 1982 (follow-up rate 90%) and 145 reference children matched for age, sex, and socioeconomic status., Results: 14% of ELBW subjects had no functional limitations, 58% had reduced function for one or two attributes, and 28% had at least three affected. The corresponding figures for the reference group were 50%, 48%, and 2% (p < 0.0001). The limitations were more severe and complex in the ELBW group, and were notably in cognition (58%), sensation (48%), mobility (21%), and self-care (17%), compared with 28%, 11%, 1%, and 0% for reference children (all p < 0.0001)., Conclusions: These data indicate that fewer ELBW than reference children were free of functional limitations and a significantly higher proportion had multiple attributes affected. The MAHS classification approach is a useful instrument to compare the health status of different groups and populations, and to monitor changes with time.

Purpose: Progressive improvement in survival rates of children with cancer demands an appraisal of the "cost of cure." Much information is available on the frequency and severity of individual late effects in long-term survivors, but there are few data on multiple sequelae in individual patients or on global morbidity burdens., Patients and Methods: To address this issue, we developed a multiattribute health status classification system. This consists of three to five levels of function within each of seven attributes: sensation, mobility, emotion, cognition, self-care, pain, and fertility. The system was applied to survivors of acute lymphoblastic leukemia (ALL)., Results: Overall burdens of morbidity were greater in those who had had "high-risk" disease than in children treated less intensively for "standard-risk" ALL. Deficits in emotional and cognitive status were especially common (alone and in combination). These were more prevalent in younger patients and exhibited a dose relationship to cranial irradiation., Conclusions: Such appraisals of morbidity must be compared with prevalence rates in the general population.

Purpose: A multiattribute health status classification system was devised to describe comprehensively the health status of survivors of childhood cancer., Methods: The system consists of seven attributes: sensation, mobility, emotion, cognition, self-care, pain, and fertility. Three to five levels of functioning are defined for each attribute. Any specific combination of seven attribute levels constitutes a health state. In the first survey, the system was used to classify the health status of 20 children currently undergoing therapy for high-risk acute lymphoblastic leukemia (ALL), Wilms' tumor, or neuroblastoma, and eight who had completed treatment. A second survey consisted of 13 children with brain tumors on active treatment., Results: In general, independent ratings by clinicians were in agreement, and consensus was readily achieved in 1 to 2 minutes per patient. Children on therapy experienced a higher burden of morbidity than those off treatment. Brain tumor patients experienced more morbidity than patients in the first survey., Conclusion: The multiattribute system provides a compact but comprehensive tool for long-term follow-up of survivors of childhood cancer. It captures both multiple sequelae and varying levels of severity. By using a mathematical utility function, a single summary score of health-related quality of life may be assigned to each health state. Additional studies to establish reproducibility, validity, responsiveness, and generalizability are indicated.