Quality of life in pre-adolescence: A 17-dimensional health-related measure (17D)

Although interest in the health-related quality of life (HRQOL) of children has increased in the last years, validated methods for assessing the HRQOL-and especially the perceived HRQOL—of children have been missing. We introduced a 17-dimensional, illustrated, generic measure of perceived HRQOL (17D) for pre-adolescents, and demonstrated its application to three populations of children aged 8–11 years: (1) 244 normal schoolchildren; (2) 22 patients surviving organ transplantation and (3) 10 patients with genetic skeletal dysplasias. The HRQOL scores and profiles of the patients differed significantly according to the diagnosis, giving support to its construct validity. The reliability of the measure was high: its repeatability coefficient was 95%. As a structured interview of 20–30 minutes, the measurement burden is reasonable. We conclude that the assessment of quality of life of pre-adolescents can and should be based on data collected from the children themselves. Our initial experience indicates that 17D is comprehensive, reliable, and valid.Supported in part by the Foundation for Paediatric Research (MA), Foundation for Economic Education (JR), and the Paulo Foundation.     

Health-related quality of life and body mass index among US adolescents

Purpose

To examine the magnitude of differences in health-related quality of life (HRQOL) by body mass index (BMI) in a population-based sample of United States adolescents overall and by sex, and to provide national prevalence estimates of reported HRQOL outcomes for not only obese and overweight but also underweight adolescents.

Methods

From the 2001 through 2010 cross-sectional National Health and Nutrition Examination Surveys, we estimated the percentages of four HRQOL outcomes—self-rated health, physically unhealthy days, mentally unhealthy days, and activity limitation days—in four BMI categories—obese, overweight, normal weight, and underweight—of approximately 6,000 US adolescents aged 12–17 years. We also estimated the percentages for boys and girls separately.

Results

Substantial gaps in self-rated health exist between normal-weight adolescents and those who are obese and overweight, but not underweight. Eighteen percent (95 % CI 15–22) of obese adolescents reported fair or poor health compared to only 5 % (95 % CI 4–7) of normal-weight adolescents. Thirty-seven percent (95 % CI 33–42) of obese adolescents reported excellent or very good health, compared to 65 % (94 % CI 63–67) of normal-weight adolescents. However, all BMI groups reported similar percentages of physically unhealthy days, mentally unhealthy days, and activity limitation days. The associations between HRQOL and BMI groups did not vary by sex. Boys generally reported significantly better self-rated health and mental health than girls. Specifically, obese boys reported better self-rated health, mental health, and fewer activity limitation days than obese girls.

Conclusions

Substantially, significant differences in some domains of HRQOL are found between above normal-weight and normal-weight US adolescents. This relationship between BMI and HRQOL is robust and observed among both boys and girls.     

Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL™ 4.0 Generic Core Scales

Background  

Advances in biomedical science and technology have resulted in dramatic improvements in the healthcare of pediatric chronic conditions. With enhanced survival, health-related quality of life (HRQOL) issues have become more salient. The objectives of this study were to compare generic HRQOL across ten chronic disease clusters and 33 disease categories/severities from the perspectives of patients and parents. Comparisons were also benchmarked with healthy children data.     

Measuring the health status burden in hemodialysis patients using the SF-36<Superscript>®</Superscript> health survey

Purpose  

The SF-36, a generic measure of 8 domains of health-related quality of life (HRQOL), has been widely used to examine HRQOL of end-stage renal disease (ESRD) patients undergoing hemodialysis (HD). The current study synthesizes existing literature to examine which SF-36 domains capture the largest burden in this patient population.     

Age and gender differences in health-related quality of life of children and adolescents in Europe: a multilevel analysis

Objectives  

To determine age and gender differences in health-related quality of life (HRQOL) in children and adolescents across 12 European countries using a newly developed HRQOL measure (KIDSCREEN).     

Health-related quality of life in a Norwegian sample of healthy adolescents: Some psychometric properties of CHQ-CF87-N in relation to KINDL-N

PurposeAs part of a large investigation of Norwegian adolescents, with an overall aim of developing methods to promote health-related quality of life (HRQOL), an adequate generic measure of HRQOL was needed. Hence the purpose of the study was to compare some of the psychometric qualities of the CHQ-CF87-N and KINDL-N in a sample of healthy adolescents and to discuss the feasibility of the 2 instruments in research and clinical settings.MethodsTwo hundred twenty-nine healthy adolescents completed the questionnaires. The internal consistency reliability and the distributional properties of the CHQ-N and KINDL-N were compared. Factor analysis was performed for the CHQ-N scales separately, as well as for the CHQ-N and KINDL-N scales combined.ResultsThe reliability of the scales of the CHQ-N was satisfactory, and generally was better for the CHQ-N scales than for the KINDL-N scales. The distributional properties of the KINDL-N scales were on average better than the CHQ-N scales. Factor analysis of the CHQ-N scales resulted in 3 interpretable factors, while analysis of the CHQ-N and KINDL-N scales combined comprised 4 interpretable factors. A 1-factor solution was in both cases interpreted as a general health-related quality of life factor.ConclusionsThe CHQ-N and KINDL-N may be regarded as adequate instruments to measure HRQOL in healthy adolescents, but to some extent they cover different dimensions of health and quality of life. The KINDL-N focuses on the psychosocial aspects, while CHQ-N covers more dimensions and has stronger focus on the physical aspects. Thus the instruments have different applications in both research and clinical settings.     

Responsiveness of generic health-related quality of life measures in stroke

Objective: To compare five preference-based generic measures of health-related quality of life (HRQOL) in terms of change scores, correlations among change scores, responsiveness, and quality adjusted life-years (QALYs) gained. Design: Observational longitudinal cohort study where clinical measures and self-assessed HRQOL measures were administered to stroke patients at baseline and at 6 months. Patients were categorized as ‘stable’, ‘some improvement’ and ‘large improvement’ using the Barthel Index, Modified Rankin Scale (MRS), and Center for Epidemiologic Studies Depression Scale (CES-D). For each group, paired t -tests and variants of effect size were used to compare the responsiveness of preference-based HRQOL summary scores, including the EQ-5D VAS and index-based score, SF-6D, and Health Utilities Index (HUI) Mark 2 (HUI2) and Mark 3 (HUI3) overall utility scores. Results: Ninety-eight of 124 (79%) patients completed the 6-month follow-up. Change scores of the EQ-Index, HUI2, and HUI3 were strongly correlated with changes in the Barthel Index and MRS, while the EQ-5D VAS had higher correlation with CES-D change scores than the other measures. The SF-6D, HUI3, and EQ-Index were generally more responsive than the HUI2 and EQ-5D Visual analogue scale (EQ-VAS). QALY estimates based on the EQ-5D index and HUI3 were twice as large as estimates based on the SF-6D and HUI2. Conclusions : The results of this study may assist in informing the selection of a preference-based generic HRQOL measure, although choice will also depend on study goals and context. We would caution against the generalization of the study results on responsiveness to conditions when more subtle change is expected.     

The PedsQL™ Infant Scales: feasibility,internal consistency reliability,and validity in healthy and ill infants

Objective  

The PedsQL™ (Pediatric Quality of Life Inventory™) is a modular instrument designed to measure health-related quality of life (HRQOL) and disease-specific symptoms in children and adolescents ages 2–18. The new PedsQL™ Infant Scales were designed as a generic HRQOL instrument specifically for healthy and ill infants ages 1–24 months. The objective of this study was to report on the initial feasibility, internal consistency reliability, and validity of the PedsQL™ Infant Scales in healthy, acutely ill, and chronically ill infants.     

Quality of life measurement in paediatric and adolescent populations with HIV: a review of the literature

Purpose   To review the quality and utility of currently available self-report generic quality of life (QOL) and health-related quality of life (HRQOL) measures for use with children and adolescents with human immunodeficiency virus and/or acquired immunodeficiency syndrome (HIV/AIDS).
Methods   Literature searches were conducted to identify QOL and HRQOL measures developed for, adapted for, or otherwise used with paediatric and adolescent populations with HIV/AIDS. The quality of measures (i.e. item generation techniques, instrument properties including reliability, validity and responsiveness) were compared and critically evaluated.
Results   Nineteen QOL/HRQOL measures were identified. Item content was generated from the respondent (adult) population in only eight (42%) measures. Seventeen (90%) measures reported internal reliability in the accepted range between 0.70 and 0.90 and four (21%) reported reproducibility statistics in this range. Although validity was reported for 19 (100%) measures, only six (32%) showed evidence for three or more properties, with construct validity being the most commonly reported aspect. The authors of eight (42%) measures reported evidence for responsiveness.
Conclusions   While almost all measures reviewed demonstrated adequate psychometric properties, only one-third demonstrated all aspects of validity, and less than half demonstrated responsiveness. None included paediatric or adolescent populations with HIV/AIDS in their development, neglecting to obtain input from target respondents in item generation to determine what health-related and daily functioning factors are of importance to them. Despite noted limitations, the AUQUEI or the SWED-QUAL appear the best currently available generic measure, and the MQOL-HIV the preferred disease-specific measure, at least for use with older adolescents/young adults.     

One-year health-related quality of life outcomes in weight loss trial participants: comparison of three measures

Background  

The literature on changes in health-related quality of life (HRQOL) in weight loss studies is inconsistent, and few studies use more than one type of measure. The purpose of the current study was to compare one-year changes in HRQOL as a function of weight change using three different measures: a weight-related measure (Impact of Weight on Quality of Life-Lite [IWQOL-Lite)]) and two generic measures (SF-36; EQ-5D).     

Conceptualizing global health-related quality of life in bladder cancer

Purpose

Patients’ values for health outcomes are central to treatment decisions in bladder cancer (BCa). An instrument incorporating the expressed preferences of BCa patients, as measured by utility, can inform clinical guidelines, resource allocation and policy decisions. Developing this instrument requires a formal conceptual framework summarizing the important domains comprising global health-related quality of life (HRQOL) in BCa.

Methods

We performed a systematic literature search on the HRQOL effects of BCa and its treatments to generate initial items in Medline, Embase, CINAHL and PsychInfo up to January 2013. Thematic synthesis was used to group related items into overarching themes (domains) and create a provisional conceptual framework. In focus groups, 12 BCa experts and 47 BCa patients with diverse clinical histories generated further items to inform the final conceptual framework.

Results

We retrieved 1,275 citations and reviewed 170 full-text publications. One hundred and sixty-nine items were extracted into 12 domains. Study investigators used the findings from the focus groups to confirm the domains and condense the list to 83 clinically important items. Functional limitations in work, travel, social interaction and sleep lowered HRQOL in many domains. The final conceptual framework included BCa-specific (urinary, sexual, bowel, body image) and generic domains (pain, vigor, social, psychological, sleep, functional, family relationship, medical care relationship).

Conclusions

A conceptual framework including 12 domains can serve as the foundation for the development of an instruments measuring global HRQOL in BCa and in particular, one that can measure patient preferences and generate utilities.     

Patient- and provider-related determinants of generic and specific health-related quality of life of patients with chronic systolic heart failure in primary care: a cross-sectional study

Background  

Identifying the determinants of health-related quality of life (HRQOL) in patients with systolic heart failure (CHF) is rare in primary care; studies often lack a defined sample, a comprehensive set of variables and clear HRQOL outcomes. Our aim was to explore the impact of such a set of variables on generic and disease-specific HRQOL.     

Health-related quality of life of Greek adolescents: the role of the Mediterranean diet

Purpose

Health-related quality of life (HRQOL) refers to an individual’s perception and subjective evaluation of their health and well-being within their unique cultural environment. HRQOL in relation to adherence to the Mediterranean diet (MD) in adolescents has not been adequately investigated in the past. The aim of this study was to examine the association between adherence to the Mediterranean diet and health-related quality of life in Greek adolescents.

Methods

A total of 359 students (166 boys; 193 girls), 13–16 years old, were recruited from 13 high schools in the area of Athens and the Dodecanese. Standard anthropometric measurements were taken, and obesity was assessed using the International Obesity Task Force (IOTF) cut-off points. Students completed the KIDMED index, which evaluates the degree of adherence to the MD. Perceived HRQOL was assessed by the KIDSCREEN-27 questionnaire for children and adolescents.

Results

Adherence to the MD seems to be significantly positively correlated with all the components and total score of HRQOL, in adolescents. Linear regression analysis has revealed that the level of adherence to the MD (P < 0.001), the level maternal education (P < 0.05) and the number of meals per day consumed with the family (P = 0.001) are significantly positively associated with HRQOL in adolescents.

Conclusions

Adherence to the MD positively affects important components of HRQOL in adolescents.     

Developmental Differences in Psychological Adjustment and Health-Related Quality of Life in Pediatric Cancer Patients

The aims of this study were to investigate: (a) age differences in psychological adjustment (PA) and health-related quality of life (HRQOL) in pediatric cancer patients, and (b) identify predictors of PA and HRQOL. The sample included preschool, school age, and adolescent patients. Data were obtained at 3 (n = 69), 9 (n = 47), and 15 (n = 44) months after diagnosis, using standardized measures completed by the mother. Measures assessed the children's psychological adjustment (PA), health-related quality of life (HRQOL), temperament and maternal psychological adjustment. Age at diagnosis significantly affected both PA and HRQOL. At 3 months post-diagnosis, preschoolers had more externalizing behavior problems than did adolescents. Preschoolers had better HRQOL than adolescents at all 3 assessments. Maternal adjustment and child's temperament scores were the best predictors of PA; age was the best predictor of HRQOL. The results of this study suggest that preschoolers with cancer are at risk for behavior problems and adolescents are at risk for poor HRQOL. The results also highlight the importance of multi-factor models in predicting children's PA and HRQOL.     

Health-related quality of life in children and adolescents with celiac disease: patient-driven data from focus group interviews

Purpose

Celiac disease (CD) is a chronic inflammatory disease requiring constant management with a gluten-free diet (GFD). Little is known about how CD impacts on health-related quality of life (HRQOL) in children and adolescents, and how they feel about and cope with CD and GFD. This qualitative study explores the impact of CD and GFD on HRQOL in everyday living of children and adolescents.

Methods

In focus group interviews, we investigated HRQOL in children and adolescents with CD in order to identify patient concerns in living with CD and on a GFD. Seven focus groups were formed with 23 children/adolescents and 3 parents. Interviews were transcribed verbatim. Grounded theory approach was applied to analyse the interviews.

Results

CD had varying impact on the children and adolescents HRQOL. Two major categories emerged with importance for HRQOL in children and adolescents with CD, having CD (constructed from the six subcategories: symptoms, the diagnosis-process, self-perception, awareness of CD, social and emotional impact of CD, and thoughts about the future) and coping with CD (constructed from the two subcategories: coping with food and coping with social situations). The complexity of coping with CD in social situations that involve food is presented in a flowchart.

Conclusions

Children and adolescents showed large diversity in how much impact CD has on their HRQOL. Different ways of coping with CD and GFD were identified. Findings will be used to generate a patient-driven disease-specific questionnaire to measure HRQOL in children and adolescents with CD.     

Developmental Differences in Psychological Adjustment and Health-Related Quality of Life in Pediatric Cancer Patients

The aims of this study were to investigate: (a) age differences in psychological adjustment (PA) and health-related quality of life (HRQOL) in pediatric cancer patients, and (b) identify predictors of PA and HRQOL. The sample included preschool, school age, and adolescent patients. Data were obtained at 3 (n = 69), 9 (n = 47), and 15 (n = 44) months after diagnosis, using standardized measures completed by the mother. Measures assessed the children's psychological adjustment (PA), health-related quality of life (HRQOL), temperament and maternal psychological adjustment. Age at diagnosis significantly affected both PA and HRQOL. At 3 months post-diagnosis, preschoolers had more externalizing behavior problems than did adolescents. Preschoolers had better HRQOL than adolescents at all 3 assessments. Maternal adjustment and child's temperament scores were the best predictors of PA; age was the best predictor of HRQOL. The results of this study suggest that preschoolers with cancer are at risk for behavior problems and adolescents are at risk for poor HRQOL. The results also highlight the importance of multi-factor models in predicting children's PA and HRQOL.     

某中学超重肥胖初中生健康相关生活质量评定

目的探讨超重、肥胖对初中生健康相关生活质量的影响,为采取干预措施提供依据。方法使用PedsQLTM4.0问卷,对某中学正常体重、超重、肥胖组初中生进行生活质量调查分析。结果超重、肥胖男生躯体功能维度得分和总分均明显低于正常组,肥胖女生社会功能维度得分显著低于非肥胖组(P值均<0.05)。结论超重、肥胖对男、女初中生生活质量的影响模式不同,干预时应采取不同策略。     

Health related quality of life [HRQOL] in childhood and adolescence: a review of the literature and instruments adapted in Spain

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.     

Health-Related Quality of Life in Children and Adolescents With Inflammatory Bowel Disease

This study examined the health-related quality of life (HRQOL) of children with Inflammatory Bowel Disease (IBD) compared with physically healthy children and the impact of IBD and steroidal side-effects on children's HRQOL. The HRQOL of 49 children and adolescents (ages 10 to 18 years) with IBD and their parents who completed the Child Health Questionnaire (CHQ; Landgraf & Abetz, 1997; Landgraf, Abetz, & Ware, 1996) was compared to that of a sample of physically healthy children (N = 49). Caregivers of children with IBD reported that their children's physical and psychological health were more limited and that they experienced more emotional worry and greater impact on their personal time compared to caregivers reporting on healthy same-age children. Children and adolescents reported worse HRQOL than physically healthy children in only one domain: general health. Children and adolescents with more IBD-related and steroidal symptoms had less adequate HRQOL as reported by their parents. Limitations in HRQOL were most pronounced in children who experienced more frequent IBD-related symptoms together with symptoms of steroidal side effects.     

Agreement was not found in adolescents' quality of life rated by parents and adolescents

ObjectiveLimited evidence examines agreement between the ratings of adolescents' health-related quality of life (HRQOL) by parents and adolescents especially accounting for measurement properties. This study aimed to test whether agreement exists between the dyads using a methodology of measurement invariance.Study Design and SettingWe conducted a telephone survey to collect data from parents and their adolescents enrolled in Florida's Children's Medical Services (376 pairs) using the PedsQL 4.0. We used multi-group confirmatory factor analysis to test measurement invariance, including configural (equivalent HRQOL construct), metric (equivalent item–domain associations), scalar (equivalent starting value of ratings), and residual (equivalent nonsystematic measurement errors of ratings) invariance. We also investigated correlates of discrepancies in the dyadic ratings.ResultsThere were equivalent HRQOL constructs and item–domain associations between the dyads. However, some items show different starting values and nonsystematic errors in the dyadic ratings. After adjusting for noninvariant items, adolescents reported significant higher HRQOL scores than parents in all domains (P < 0.05). Parents' rating of adolescents' health significantly contributed to discrepancies in the dyadic ratings (P < 0.05).ConclusionsAdolescents rated HRQOL higher than their parents. This discrepancy was associated with severe health conditions. Without assuring measurement invariance, comparisons of the dyadic HRQOL ratings can be misleading.