Search

Background: Neuroblastomas account for 8-10 % of all cancer diagnoses among children. Most patients present with advanced, high-risk disease and 90 % are less than five years old. The burden of morbidity and mortality is high and is quantifiable by measures of health-related quality of life (HRQL). Measuring quality of life in under five-year-old children is a particular challenge that has been met with the development of the Health Utilities Pre-School (HuPS) instrument. Quality of life studies in children with cancer are scarce in low- and middle-income countries and are usually conducted at a single center, thus limiting any conclusions drawn. This pilot study aimed to assess the health-related quality of life of children at the time of diagnosis of high-risk neuroblastomas., Method: This prospective cross-sectional multicentric study assessed the quality of life of children with high-risk neuroblastoma. The Health Utilities Pre-School instrument was applied to under five-year-olds, and the related Health Utilities Index Mark 3 instrument to over five-year olds., Main Results: Eleven patients participated in this study. There was a high burden of morbidity at diagnosis, often equating to severe disability, indicative of states of health with scores worse than being dead in two under five-year-old children., Conclusion: The results of the current study will help to set research priorities for subsequent investigations and provide a basis to improve supportive care for children with high-risk neuroblastoma., Competing Interests: Conflicts of interest The authors have no competing interests to declare., (Copyright © 2024 Associação Brasileira de Hematologia, Hemoterapia e Terapia Celular. Published by Elsevier España, S.L.U. All rights reserved.)

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.)

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.

The paper by Cox et al. offers an important potential for informing designs of future studies. The rates of missing measurements in the study are much greater than those reported by other investigators. This is not surprising because the nurse assessors were restricted explicitly by the study protocol from collecting required information, had little contact with many of the patients, and some had a poor understanding of the measurement system. Standard multi-attribute system questionnaires, such as the one used in the Cox et al. study, have been designed carefully and require assessments of aspects of health that are not always readily observable (e.g. emotional status). There is an abundance of published evidence, from studies conducted around the world, of acceptable measurement properties for these instruments. However, the published evidence also indicates that measurement properties are compromised with the use of proxy assessors who have little day-to-day knowledge of patients. We conclude that the Cox et al. study results provide evidence that multi-attribute system assessments should be elicited from patients themselves or, failing that, from proxy assessors known to be well-informed about the patients' capacity on all relevant attributes.

Background: Breast hypertrophy is associated with clinically important morbidity. A prospective study was conducted to assess the change in health-related quality of life (HRQL) following breast reduction mammoplasty. This paper describes the measurement properties of each of the HRQL questionnaires used., Methods: The reliability, responsiveness, and the construct validity of each HRQL instrument (the Health Utilities Index Mark 2 (HUI2) and Mark 3 (HUI3) and the Breast Reduction Assessment Value and Outcomes (BRAVO) instruments) were assessed. The BRAVO instruments are a set of separate instruments including the Short Form-36 (SF-36), the Multidimensional Body Self Relations Questionnaire Appearance Assessment (MBSRQ-AS), and the Breast Related Symptoms Questionnaire (BRSQ)., Results: The HUI2, the HUI3, the MBSRQ-AS, and the breast severity symptom (BSS) score from the BRSQ all demonstrated good test-retest reliability. The SF-36 physical component summary, the MBSRQ-AS, and the BSS score demonstrated high responsiveness. The SF-36 mental component summary and the HUI3 had a moderate effect size and the HUI2 had a small effect size. All of the changes in scales are correlated in the same direction except for the SF-36 physical component summary and the SF-36 mental component summary., Conclusion: All four instruments were found to be reliable and responsive. These instruments can be used in similar clinical settings to evaluate the change in patients' HRQL.

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 Cancer 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.