John Horsman

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.

Measuring patient and relative satisfaction with level or aggressiveness of care and involvement in care decisions in the context of life threatening illness

The objective of the study was to develop valid and reliable discriminative indices which measure patient and relative satisfaction with two closely related aspects of medical care: the level of care received and their involvement in decisions regarding care. We generated items by literature review and interviews with patients, relatives, and health care providers. In the final questionnaires, we included the items identified most frequently as sources of dissatisfaction and rated most important by 102 patients and 153 relatives. To measure reliability and validity we administered the instruments to 105 patients and 75 relatives of competent patients and 89 relatives of incompetent patients. We constructed three questionnaires: the Patient Satisfaction Index with 23 items, the Relative of Competent Patient Satisfaction Index with 34 items, and the Relative of Incompetent Patient Satisfaction Index with 29 items. We found mean scores of 75-80% of the maximum possible score, with a wide range of scores. The intraclass correlation for the instruments varied from 0.86 to 0.94. Correlations with global ratings were high (0.59-0.75) and similar to predictions. Correlations with caregiver ratings were lower than predicted (0.18-0.22). For both patients and relatives, our instruments discriminate between those with higher and lower satisfaction with the level of medical care and with their involvement with decision-making.

Self and proxy-reported health status and health-related quality of life in survivors of childhood cancer in Uruguay†

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.

Patient-specific evidence-based care recommendations for diabetes mellitus: development and initial clinic experience with a computerized decision support system

BACKGROUND adherence with evidence-based recommendations for chronic disease management is often suboptimal. Providing patient-specific reminders at the time of clinical encounters has the potential to improve this situation. A necessary prerequisite for providing such reminders, however, is to have an efficient means of acquiring patient information that can be matched to an underlying knowledge base. The decision support system: we have developed a computer-based, self-administered questionnaire for diabetes care. The questionnaire assesses numerous diabetes-related topics. Patients complete the questionnaire using a touchscreen interface, and their responses are then matched to evidence-based guidelines so that patient-specific care suggestions can be provided for both the patients and their health care professionals. The guidelines are derived from a database of abstracts of studies of diabetes care that are screened for scientific merit and clinical relevance, supplemented by recommendations from diabetes organizations. EVALUATION initial evaluation of the system included an assessment of the agreement of responses to the automated questionnaire with responses to similar questions administered during a structured, personal interview. Overall agreement was 92.5% and the majority of disagreements were minor. More recently, patients aged 18-69 years have been completing the automated questionnaire before appointments at a diabetes clinic. The average time required has been 10.9 min and a mean of 3.0 recommendations have been provided per patient. Patient and health care practitioner satisfaction with the questionnaire and the patient-specific feedback have been high. CONCLUSIONS evidence-based patient-specific diabetes care recommendations can be provided using a self-administered computer-based questionnaire.

Bleeding disorders, menorrhagia and iron deficiency: impacts on health-related quality of life.

von Willebrand disease (VWD) is a bleeding disorder that occurs in up to 1% of the general population. The great majority of females with VWD experience menorrhagia. The morbidity burden in females with VWD may relate to iron deficiency resulting from menorrhagia. To explore relationships between bleeding disorders, menorrhagia, iron deficiency and the outcomes of health‐related quality of life (HRQL) and educational attainment. All subjects with VWD, and females with other bleeding disorders, in the Canadian national registry who were more than 12 years of age were eligible for survey. Survey measures included the HEALTH UTILITIES INDEX®; abridged Clinical History Assessment Tool; socio‐demographic questions and serum ferritin. Statistical analyses included testing differences among groups of means using analysis of variance and of proportions using chi‐squared test. Significant size differences in mean HRQL scores were detected between VWD females and both females with other bleeding disorders [diff = (−0.08); P = 0.017] and VWD males [diff = (−0.07); P = 0.039]. Mean HRQL scores differed between females with and without menorrhagia (P < 0.001). Mean HRQL scores were not significantly different between females with and without iron deficiency. Educational attainment was not associated with disease group, menorrhagia status or iron status. Females with VWD have a greater morbidity burden than females in the general population, females with other bleeding disorders and males with VWD. Menorrhagia is associated with low HRQL scores in females with bleeding disorders, including VWD. Further investigation should assess how menorrhagia impacts HRQL in females with bleeding disorders.

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

Introduction: 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. Methods: 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 Câncer in São Paulo, Brazil. Results: 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. Conclusion: 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.

Disability and health-related quality of life in long-term survivors of cancer in childhood in Brazil.

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.

Inter-observer agreement of a comprehensive health status classification system for pre-school children among patients with Wilms’ tumor or advanced

AbstractWe assessed inter-observer agreement on a new comprehensive health status classification system for pre-school 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.

Health status of young children during therapy for advanced neuroblastoma

The purpose of this study was to describe the health status experienced by young children during various phases of therapy for advanced neuroblastoma.

Health-related Quality of Life in Long-term Survivors of Brain Tumors in Childhood and Adolescence: A Serial Study Spanning a Decade.

Survivors of brain tumors in childhood experience adverse sequelae that are greater in prevalence and severity than those encountered by survivors of all other forms of cancer in early life, reflected in a burden of morbidity by instruments measuring health-related quality of life (HRQL). However, there are few studies of the change in HRQL over time in such populations. Patients who were above 5 years of age, at least 2 years from completion of therapy, and able to communicate in English were eligible for study of HRQL by the Health Utilities Index HUI2 and HUI3 at study entry, and again 5 and 10 years later. An initial cohort of 40 patients was reduced to 37 and 25 at the second and third time points, respectively, although only 1 death occurred during the study. HRQL showed a progressive decline over the decade, reaching conventional levels of clinical significance for the sizes of the changes. Median scores for HUI2 were 0.93, 0.90, and 0.88; and for HUI3 were 0.88, 0.85, and 0.77 at baseline, 5, and 10 years, respectively. The serial decline in HRQL demands further examination and an exploration of potential targets for therapeutic intervention.