Abstract: Objective: To identify currently available generic and disease-specific health-related quality of life (HRQOL) instruments for children and adolescents up to 19 years old, to describe their content, and to review their psychometric properties. Study Design: Previous reviews on the subject and a new literature review from 2001 to December 2006 (MEDLINE, the ISI Science Citation Index, HealthSTAR and PsycLit) were used to identify measures of HRQOL for children and adolescents. The characteristics (country of origin, age range, type of respondent, number of dimensions and items, name of the dimensions and condition) and psychometric properties (reliability, validity, and sensitivity to change) of the instruments were assessed following international guidelines published by the Scientific Committee of the Medical Outcomes Trust. Results: In total, 30 generic and 64 disease-specific instruments were identified, 51 of which were published between 2001 and 2005. Many generic measures cover a core set of basic concepts related to physical, mental and social health, although the number and name of dimensions varies substantially. The lower age limit for self-reported instruments was 5-6 years old. Generic measures developed recently focused on both child self-report and parent-proxy report, although 26% of the disease-specific questionnaires were exclusively addressed to proxy-respondents. Most questionnaires had tested internal consistency (67%) and to a lesser extent test-retest stability (44.7%). Most questionnaires reported construct validity, but few instruments analyzed criterion validity (n = 5), structural validity (n = 15) or sensitivity to change (n = 14). Conclusions: The development of HRQOL instruments for children and adolescents has continued apace in recent years, particularly with regard to disease-specific questionnaires. Many of the instruments meet accepted standards for psychometric properties, although instrument developers should include children from the beginning of the development process and need to pay particular attention to testing sensitivity to change.
Abstract: BACKGROUND: The aim of the present study was to analyse the use of healthcare services according to health status in a population of children and adolescents, taking into account family socio-demographic characteristics and characteristics of the proxy respondent. METHODS: A total of 836 interviews of proxy respondents for children aged 5-14 years from the Barcelona Health Interview Survey carried out in 2000 were included. Dependent variables were visits to a healthcare professional, visits to the emergency room, and hospitalization. Independent variables were: report of medical conditions, health status of the child measured by the Child Health and Illness Profile-Child Edition, Parent Report Form (CHIP-CE/PRF), the educational level of the head of household, social class, child's healthcare coverage, and proxy-related variables [mental health status by means of the General Health Questionnaire-12 items version (GHQ-12), and other]. Logistic regression analysis was used to estimate prevalence ratio (PR) to compare the use of healthcare services among different categories of independent variables. RESULTS: Children having worse health status were more likely to have visited a healthcare professional [PR = 1.68; 95% confidence interval (95% CI) = 1.09-3.83], whereas children with a reported medical condition were more likely to have made a visit to the emergency service (PR = 1.47; 95% CI = 1.27-2.55) and were hospitalized more frequently (PR = 2.50; 95% CI = 1.12-5.57). Higher likelihood of visits to the emergency room was associated with children having both public and private coverage and a proxy respondent scoring 3 or higher on the GHQ-12. CONCLUSIONS: Use of healthcare services differed by health needs but not by social class. Double healthcare coverage and mental distress of the proxy respondent influenced the use of emergency services.
Abstract: OBJECTIVES: To obtain a Spanish version of the CHIP-CE semantically and culturally equivalent to the original version. METHOD: The methodology used was based on the forward-backward method. Two translations into Spanish were performed. After the first reconciled version, 44 cognitive interviews were carried out with children aged 6-11 years old, selected from two schools in Barcelona. The interviews were recorded and transcribed. A qualitative content analysis of the textual data was carried out. A panel of experts developed the second reconciled version taking into account the children's comments. A back-translation into English was carried out and was compared with the original version. RESULTS: Of a total of 45 items induced in the first reconciled version, 21 were considered equivalent, 23 required changes and 1 was considered not equivalent. Comprehension of abstract concepts differed according to age. Older children differentiated among concepts and gave different examples of experiences related to these concepts, while younger children (6 to 7-year olds) provided similar examples for different concepts. The children's comments were used in the reformulation of the items. An illustrative figure reinforced understanding. Children aged 7 or more started to use an adequate recall period and used the response options correctly. CONCLUSIONS: The Spanish version of the CHIP-CE seems appropriate for children aged 6-11 in Spain. The present study shows that children from the age of 6 years onwards are able to describe the health concepts included in the CHIP-CE.
Abstract: OBJECTIVES: The aim of this study is to describe the views, perceptions and personal experience around elective cataract and hip and knee replacement waiting lists in Catalonia in order to improve their management. DESIGN: Qualitative methodology: four focus groups for each procedure. PLACE: Conducted between February-March 2000 at the Catalan Health Services headquarters. PARTICIPANTS: Each focus group included consultants (ophtalmologists, orthopedic surgeons, rheumatologists, rehabilitators, GPs), other related health professionals (nurses, social workers, physiotherapists, opticians/optometrist, GPs), patients and relatives and general population. Participants were selected through researchers and the clinical scientific committees. All of them followed a pre-established inclusion criteria. MAIN MEASURES: The analysis of the information was performed using the content analysis technique (contents of sessions were transcripted and information classified according to themes). RESULTS: Ten themes were identified. Waiting lists were argued to be a consequence of lack of resources, bad management and conflict of interest among consultants. Overall, the health care authority responsibility for the solution was acknowledged, although some participants claim more citizen participation. Among proposed solutions, prevention and education, more resources and improved management were found. Furthermore, a better physician-patient communication was considered essential. All the groups disagreed with the implicit current prioritisation system, however none wanted to assume the responsibility. CONCLUSIONS: Citizen's perceptions and personal experiences point to a multifactorial approach to waiting lists management, which would ameliorate the problem and lead to a better social acceptance.
Abstract: OBJECTIVES: To analyze the reliability and validity of the domains of the Child Health and Illness Profile-Child Edition Parent Report Form (CHIP-CE/PRF) included in the Barcelona Health Survey conducted in 2000 and to obtain population-based reference values. METHODS: Data were obtained from proxy-respondent interviews of children aged 5-14 years old (n = 836) participating in the Barcelona Health Survey 2000. The 4 subdomains of the parent version of the CHIP-PRF included in the health survey were: satisfaction with health, and physical discomfort, emotional discomfort, and limitation of activities of the discomfort domain. Internal consistency was assessed using Cronbach's alpha coefficients. An exploratory factor analysis was carried out and analysis of covariance was performed to assess the construct validity of the subdomains. RESULTS: In all the subdomains assessed, Cronbach's alpha was above 0.70 (range, 0.76-0.98). In the factorial analysis, almost all the items (31/35) presented the highest load in their corresponding subdomain. Most of the expected mean differences among groups were confirmed. Girls aged 10-14 years old scored the lowest, both in satisfaction with health (48.93; 95% confidence interval [CI 95%], 47.40-50.47) and in discomfort (48.87; CI 95%, 47.51-50.22). No differences were found according to the social class of the head of the family. CONCLUSIONS: The present study provides a useful measure of perceived health status in a child health survey.
Abstract: The aims of this study were to systematically review the availability and characteristics of generic instruments of health-related quality of life (HRQOL) for use in childhood and adolescence published in the literature, and to revise generic or disease-specific measures adapted or developed for use in Spain. Questionnaires were selected if they had been developed specifically for use in children and/or adolescents. The data bases consulted were Medline, HealthSTAR and PsycLIT (1980-August 2001). Combinations of key words were used with no restriction on language. The main characteristics analyzed were the content and psychometric properties of the questionnaires retrieved. For instruments adapted for use in Spain, the quality of the adaptation process was also reviewed.Fifteen generic HRQOL instruments for use in children and adolescents were found. The measures were designed for the age range 4-18 years. The number and content of domains, and the number of items included in each measure varied greatly. Test-retest reliability was analyzed in half of the instruments, and all authors analyzed at least one aspect of validity. Two generic and five specific instruments have been developed or adapted in Spain. The adaptation process was generally acceptable.Sensitivity to change has been assessed only in two of the instruments analyzed (one generic and one specific). HRQOL measurement in children and adolescents is in initial stages. The next step will be to investigate the utility of these measures in clinical practice and public health.
Abstract: Available evidence suggests that fracture prediction with bone densitometry may improve when used on people at high risk of osteoporotic fractures. The objectives of this literature review were: (1) to identify risk factors for fracture that are associated with the development of a low bone mass for both men and women; (2) to describe and assess the relationship between these factors and the risk of fracture; and (3) to classify them according to the strength of their association with fracture incidence. Studies were identified from MEDLINE (1982-1997), HealthSTAR (1975-1997) and The Cochrane Library (1997) databases. Pre-stated inclusion criteria (original analytic studies assessing risk factors for osteoporotic fractures in men and women) and methodologic quality were assessed by two independent investigators. Information on the study design and analysis, characteristics of participants, exposure (risk factor) and outcome measures (relative risk and odds ratios for fracture incidence), control for potential confounding factors and risk estimates was extracted using a standardized protocol. Qualitative and meta-analytic techniques were used for data synthesis. As a result, risk factors were classified into three groups according to their strength of association with fracture: high risk (RR > or = 2), moderate risk (1 < RR < 2) and no risk or protective (RR < or = 1). Of approximately 80 risk factors identified from 94 cohort and 72 case-control studies, 15% were classified in the high-risk group, including low body weight, loss of weight, physical inactivity, the consumption of corticosteroids or anticonvulsants, primary hyperparathyroidism, diabetes mellitus type 1, anorexia nervosa, gastrectomy, pernicious anemia, and aging (> 70-80 years). Eighteen percent and 8% of risk factors were classified in the moderate and no risk group respectively, whereas 60% showed either a lack of scientific evidence confirming their association with fracture or contradictory results. An efficient strategy for bone densitometry provision may thus be its selective use in those individuals who present with several strong or moderate risk factors for fracture related to bone mass loss.
Abstract: OBJECTIVES: This paper presents the results of different screening policies for prenatal detection of Down syndrome that would allow decision makers to make informed choices. METHODS: A decision analysis model was built to compare 8 screening policies with regard to a selected set of outcome measures. Probabilities used in the analysis were obtained from official administrative data reports in Spain and Catalonia and from data published in the medical literature. Sensitivity analyses were carried out to test the robustness of screening policies' results to changes in uptake rates, diagnostic accuracy, and resources consumed. RESULTS: Selected screening policies posed major trades-offs regarding detection rates, false-positive results, fetal loss, and costs of the programs. All outcome measures considered were found quite robust to changes in uptake rates. Sensitivity and specificity rates of screening tests were shown to be the most influential factors in the outcome measures considered. CONCLUSIONS: The disclosed trade-offs emphasize the need to comprehensively inform decision makers about both positive and negative consequences of adopting one screening policy or another.
