Factors associated with health-related quality of life (HRQOL) in adults with short stature skeletal dysplasias

Quality of Life Research - Numerous factors associate with health disparities. The extent to which such factors influence health-related quality of life (HRQOL) among adults with short stature...     

Clinical outcomes and health-related quality of life (HRQOL) following haemopoietic stem cell transplantation (HSCT) for paediatric leukaemia

Background Haemopoietic stem cell transplantation (HSCT) is a life‐saving but intensive procedure associated with potentially severe adverse late effects. We aimed to determine morbidity and health‐related quality of life (HRQOL) in a sample of survivors aged 8–18 years at least 1 year post HSCT for paediatric acute leukaemia, compared with a non‐transplanted group of survivors matched for age, gender, initial disease and time since treatment. Methods Families (N = 54; HSCT n= 29) recruited from four UK centres completed measures of child behaviour and school attendance, HRQOL and finances. Mothers completed measures of their own well‐being. Clinical outcome data were extracted from medical records. Results Children in the HSCT group had significantly more late effects and had received more tests for vision, bone, dental and skin health, and thyroid, lung, and gonadal function than the non‐transplanted group. HRQOL scores for the HSCT group were significantly lower in all domains compared with the non‐transplanted group and population norms, but were not significantly related to clinical indices. Mothers in the HSCT group had significantly poorer mental well‐being than population norms. Conclusion Significant morbidity and compromised HRQOL was found in survivors of HSCT. The burden of caring for a child after HSCT has a continuing toll on mothers' well‐being.The importance of counselling families about possible long‐term consequences is emphasized.     

The effect of health-related quality of life (HRQOL) on health service utilisation of a Chinese population

This study was designed to find out whether health-related quality of life (HRQOL) was an independent determinant of health service utilisation of a Chinese population and to determine whether the addition of HRQOL data to sociodemographic and morbidity factors could significantly increase the explanatory power of risk-adjustment models. A cross-sectional random telephone survey of the general adult Chinese population in Hong Kong was conducted among 2410 Chinese aged 18-88yr old, 52% were females and 38% had one or more chronic diseases. Health service utilisation was measured by annual consultation, monthly consultation and hospitalisation rates. HRQOL was measured by the SF-36. Multivariate regressions were used to test the dependence of service utilisation rates on sociodemographic factors, chronic morbidity and the SF-36 scores. Structured multiphase regression analyses were used to determine the magnitude of the effect of the SF-36 scores, in addition to those of sociodemographic and chronic morbidity factors, on service utilisation. Five of eight SF-36 scores were independent determinants of consultation rates. They doubled and tripled the percentages of variance explained for annual and monthly consultation rates, respectively. Role limitation by physical problems and bodily pain scores had a significant effect on hospitalisation rates. This was the first study showing a linear relationship between HRQOL and service utilisation on a Chinese population. It confirmed the clinical relevance of the SF-36 to a culture and health care system that is different from that of the United States where the instrument originated.     

Socioeconomic inequalities in mental health and health-related quality of life (HRQOL) in children and adolescents from 11 European countries

Objectives

To assess the presence and magnitude of social inequalities in mental health and health-related quality of life (HRQOL) in the population aged 8–18 years in 11 European countries.

Methods

Cross-sectional surveys were carried out in representative samples of children/adolescents (8–18 years) from the participating countries of the KIDSCREEN project. Mental health was assessed using the Strengths and Difficulties Questionnaire (SDQ), and HRQOL by means of the KIDSCREEN-10. Socioeconomic status (SES) was assessed using the Family Affluence Scale and parental level of education. The association between health outcomes and SES was analyzed with the regression-based relative index of inequalities (RII) and population attributable risk.

Results

A total of 16,210 parent–child pairs were included. The SDQ showed inequalities in mental health according to family level of education in all countries (RII = 1.45; 1.37–1.53). The RII for HRQOL was 2.15 (1.79–2.59) in the whole sample, with less consistent results by age and country.

Conclusions

Socioeconomic inequalities in mental health were consistently found across Europe. Future research should clarify the causes of these inequalities and define initiatives which prevent them continuing into adulthood.     

The impact of chronic diseases on the health-related quality of life (HRQOL) of Chinese patients in primary care

BACKGROUND: Ageing of the population results in an increasing number of people living with chronic diseases that can adversely affect their quality of life. Information on the impact of chronic diseases on quality of life can make health services more patient-centred. OBJECTIVES: The aim of this study was to determine the impact of eight chronic diseases on the health-related quality of life (HRQOL) of Chinese patients. METHODS: A cross-sectional case-control study was carried out on 760 adult Chinese patients of a family medicine clinic in Hong Kong. Each subject answered the COOP/WONCA charts and a standard questionnaire on demographic and morbidity data. The likelihood of sub-optimal COOP/WONCA scores of each disease group was compared with that of patients without any of the surveyed diseases. The independent effects of each disease on the COOP/WONCA scores were analysed by multivariate logistic regression, controlling for demographic variables and co-morbidity. RESULTS: Depression increased the risks for sub-optimal scores in all but one COOP/WONCA chart with odds ratios (OR) ranging from 2.1818 to 3.8645. Hypertension increased the risk of a sub-optimal physical fitness score (OR 1.7263). Increased risk of limitations in daily activities was associated with stroke (OR = 1.8771), osteoarthritis of the knee (OR = 1.5867), diseases of joints other than the knees (OR 2.0187) and asthma/COPD (OR 2.1679). Osteoarthritis of the knees also increased the risk of sub-optimal overall health (OR = 1.7927). CONCLUSIONS: Depression was the most disabling disease, and osteoarthritis of the knee had more impact on the HRQOL than many other chronic diseases. The lack of adverse effects of diabetes mellitus and heart disease on the HRQOL of Chinese patients deserves further studies.     

The Osteoporosis Assessment Questionnaire (OPAQ): A reliable and valid disease-targeted measure of health-related quality of life (HRQOL) in osteoporosis

The Osteoporosis Assessment Questionnaire (OPAQ) is a reliable and valid disease-targeted self assessment questionnaire of health-related quality of life (HRQOL) in osteoporosis first developed in 1993. OPAQ has been used in two international multicenter trials. OPAQ structure includes 14–18 domains which may be grouped into four dimensions: physical function, emotional status, symptoms and social interaction. OPAQ exists in two long versions: OPAQ 1.0 (73 questions) and OPAQ 2.0 (60 questions) OPAQ also exists as a short version: OPAQ-SV (34 questions) with three dimensions: physical function, emotional status and back pain. OPAQ detects changes in HRQOL with prevalent vertebral and nonvertebral fracture. Decreases in HRQOL are seen with increasing numbers of prevalent vertebral fractures. OPAQ is sensitive to changes in HRQOL of incident vertebral fracture.     

Content comparison of health-related quality of life (HRQOL) instruments based on the international classification of functioning,disability and health (ICF)

The increasing recognition of the patient perspective and, more specifically, functioning and health, has led to an impressive effort in research to develop concepts and instruments to measure them. Health-Related Quality of Life (HRQOL) and the International Classification of Functioning Disability and Health (ICF) represent two different perspectives from which to look at functioning and health. Therefore, it is expected that both will often be used concurrently in clinical practice, research and health reporting. The objective of our study was to examine the relationship between six HRQOL instruments (the SF-36, the NHP, the QL-I, the WHOQOL-BREF, the WHODASII and the EQ-5D) and the ICF. All six HRQOL instruments were linked to the ICF separately by two trained health professionals according to ten linking rules developed specifically for this purpose. The degree of agreement between health professionals was calculated by means of the kappa statistic. Bootstrapped confidence intervals were calculated. In the 148 items of the 6 instruments a total of 226 concepts were identified and linked to the ICF. The estimated kappa coefficients range between 0.82 and 0.98. The concepts contained in the items of the HRQOL instruments were linked to 91 different ICF categories, 17 categories of the component body functions, 60 categories of the component activities and participation, and 14 categories of the component environmental factors. Twelve concepts could not be linked to the ICF at all. In the component body functions, only emotional functions are covered by all examined instruments. In the component activities and participation, all instruments cover aspects of work, but the half of them scarcely cover aspects of mobility. Only four of the six instruments address environmental factors. The ICF proved highly useful for the comparison of HRQOL instruments. The comparison of selected HRQOL instruments may provide clinicians and researchers with new insights when selecting health-status measures for clinical studies.     

The effectiveness of psychosocial interventions designed to improve health-related quality of life (HRQOL) amongst asthmatic children and their families: a systematic review

Purpose

Asthmatic children are at risk of compromised health-related quality of life (HRQOL) compared with their healthy peers. This systematic review reports the range and effectiveness of psychosocial interventions designed to improve HRQOL amongst asthmatic children, adolescents, and their families.

Method

Data sources included The Cochrane Airways Group Trials Register of trials, PubMed database, and reference lists from review articles.

Results

Eighteen studies of psychosocial interventions were identified. Interventions were designed to improve HRQOL amongst a range of psychosocial, health care, school-related and clinical outcomes, and were delivered in numerous settings and formats. Four studies reported that interventions were effective for significant improvements in child overall HRQOL scores. These include asthma education (n?=?2), asthma education plus problem solving (n?=?1), and art therapy (n?=?1).

Conclusions

Most interventions focussed on the delivery of asthma education to children, with the purpose of improving knowledge about asthma and disease management. There is limited evidence to suggest that interventions currently available are effective for significantly improving HRQOL amongst asthmatic children, adolescents, and their families. Most interventions lacked a theoretical basis and did not focus on family functioning variables. Multi-component interventions that incorporate asthma education along with strategies to assist families with implementing behaviour change towards improved asthma management are required. Future interventions should also attempt to address the wider context of family functioning likely to contribute to the family??s ability to engage in successful asthma management in order to improve HRQOL.     

The Generation R study: a candidate gene study and genome-wide association study (GWAS) on health-related quality of life (HRQOL) of mothers and young children

Aim  

The aim of this paper is to describe the Generation R study as a template that enables candidate gene study and genome-wide association study regarding health-related quality of life (HRQOL) of mothers and their young children.     

Physical activity and health-related quality of life: US adults with and without limitations

Purpose

The purpose of this study was to examine the dose–response relationship between physical activity (PA) and health-related quality of life (HRQOL) among adults with and without limitations.

Methods

We dichotomized HRQOL as ≥14 unhealthy (physical or mental) days (past 30 days), or <14 unhealthy days. By using a moderate-intensity minute equivalent, PA categories were as follows: inactive, 10–60, 61–149, 150–300, and >300 min/week. Persons with limitations reported having problems that limited their activities or required use of special equipment. Age-adjusted prevalence estimates and logistic regression analyses were performed with 2009 Behavioral Risk Factor Surveillance System data (n = 357,665), controlling for demographics, BMI, smoking, and heavy alcohol use.

Results

For adults without limitations, the odds of ≥14 unhealthy days were lower among adults obtaining any PA (10–60 min/week, AOR = 0.79, 95 % CI 0.70, 0.88), compared with those inactive. A quadratic trend (P < 0.001) indicated enhanced HRQOL with each PA level, but improvements were less marked between lower and upper sufficient PA categories (150-300 and >300 min/week). Because of a significant age interaction, persons with limitations were stratified by age (18–34, 35–64, and 65+ years). Findings for persons aged 35 years or older with limitations were similar to those without limitations. Lower odds of poor HRQOL for persons aged 18–34 years with limitations were associated with recommended levels of PA (150–300 min/week; AOR = 0.61, 95 % CI 0.43, 0.88 and >300 min/week; AOR = 0.58, 95 % CI 0.43, 0.80).

Conclusions

PA is positively associated with HRQOL among persons with and without limitations.     

欧洲五维健康量表(EQ-5D)中文版应用介绍

  目的  了解上海市老年人健康相关生命质量及其影响因素,为提高老年人生存质量提供参考依据。  方法  收集上海市2013年第五次国家卫生服务调查数据,对上海市17个区县11 103名老年人的健康相关生命质量及其影响因素进行分析。  结果  上海市11 103名老年人中,欧洲五维健康量表（EQ-5D）健康描述系统行动能力、自我照顾能力、日常活动能力、疼痛或不舒服、焦虑或抑郁5个维度均没有任何困难者8 136人（73.28 %）,有极度困难者16人（0.14 %）。上海市老年人EQ-5D量表视觉模拟标尺（EQ-VAS）得分为0～100分,25 %分位数为70分,中位数为80分,75%分位数为85分。多因素分位数回归分析结果显示,婚姻状况已婚和丧偶、每天吸烟、饮酒 ≥ 1次/周、体育锻炼 ≥ 1次/周和1年内进行健康体检的EQ-VAS得分Q₅老年人得分较高,年龄 ≥ 70岁和患慢性病的EQ-VAS得分Q₅老年人得分较低;婚姻状况已婚和丧偶、饮酒 ≥ 1次/周、体育锻炼 ≥ 1次/周和1年内进行健康体检的EQ-VAS得分Q₂₅老年人得分较高,农业户口、年龄 ≥ 70岁、患慢性病和体育锻炼 < 1次/周的EQ-VAS得分Q₂₅老年人得分较低;女性、饮酒 ≥ 1次/周和体育锻炼 ≥ 3次/周的EQ-VAS得分Q₅₀老年人得分较高,年龄 ≥ 70岁和患慢性病的EQ-VAS得分Q₅₀老年人得分较低;婚姻状况已婚、离异和丧偶的EQ-VAS得分Q₇₅老年人得分较高,年龄 ≥ 70岁和患慢性病的EQ-VAS得分Q₇₅老年人得分较低;农业户口和患慢性病的EQ-VAS得分Q₉₅老年人得分较低。  结论  上海市老年人健康相关生命质量较好,户籍类型、年龄、婚姻状况、是否患慢性病、吸烟情况、饮酒情况、体育锻炼和1年内是否进行健康体检是该地区老年人健康相关生命质量的主要影响因素。     

Patient expectations and health-related quality of life

Objective

The measurement of health-related quality of life (HRQL) has become increasingly common in health services research. Whilst useful, its focus on behaviour, capacities and activities means that it remains relatively specific. This paper explores the possibility of extending the evaluation of health by considering the concept of patients’ expectations.

Design

In-depth and semi-structured interviews were used to explore the concept of expectations from the patients’ perspective. Patients’ expectations were then used in the construction of a two-part questionnaire.

Settings and participants

Expectations were explored with a group of 33 cardiac patients. The resulting questionnaire was given to 400 cardiac patients in a large teaching hospital in London.

Results

Patients identified a range of expectations which related to their health and seemed to represent the desired results of their hospital stay. Comparison of the content of patient expectations with a commonly used generic measure of HRQL, the Short-Form 36 (SF-36), found some overlap but indicated that patients seemed to adopt a broader approach to their health. Expectations that patients identified were used to construct two scales to measure expectations and their evaluation. The internal consistency of these scales was 0.82 and 0.88, respectively.

Conclusion

The study indicates the potential complexity of the concept of expectations and the need for further exploration. It also demonstrates the feasibility of constructing standardized scales to measure patient expectations. Whilst conceptually different from HRQL such standardized expectations scales could provide a useful adjunct to HRQL measurement and provide a meaningful context for the interpretation of HRQL data.

     

Defining and assessing health-related quality of life

In recent years, there has been an increasing interest in quality of life assessment in clinical research and practice, as well as in public health and policy analysis. Indicators of health-related quality of life are important not only for health professionals and their patients, but also for health administrators and health economists in health care planning and policy making. Most studies on the outcome of treatments and interventions now include some kind of a quality of life measure. This usually takes a form of an assessment of symptoms and physical functioning, measurement of psychological well-being, life satisfaction, or coping and adjustment. Numerous scales of psychological health, physical health status and physical functioning have been developed for use in the assessment of health outcomes and a wide range of instruments for measurement of health-related quality of life is available. These fall into two broad categories of generic and disease-specific instruments. The selection of an instrument depends upon its measurement properties but also upon the specific context in which the instrument is going to be used. Adequate attention needs to be paid to the translation and validation of instruments for use across countries and cultural contexts.     

Dizziness impairs health-related quality of life

Purpose

Relatively little is known about the level of impairment in patients with dizziness.

Research question

How much does dizziness impair the quality of life of patients referred to a multidisciplinary dizziness unit?

Patients and methods

All 2,252 patients completed the Dutch version of the Dizziness Handicap Inventory (DHI-D; score 0?C100 with higher scores representing more impairment). The results were classified into three categories: mild, moderate, and severe impairment. The three domains in the DHI representing physical, functional, and emotional aspects of dizziness were compared, as well as DHI scores of men versus women, between diagnoses, and the relationship between DHI and age.

Results

A total of 2,242 patients (64% women, mean age 54?years) completed the DHI with a mean score of 40.6. Almost 70% of patients had moderate or severe complaints. The handicap perceived by patients was primarily caused by physical and functional factors and less by emotional factors. Female patients and patients with hyperventilation syndrome and/or anxiety disorder had significantly higher DHI scores on all subscales. There was an S-shaped relationship between DHI score and age, and older patients reported more impairment.

Conclusion

Dizziness has considerable impact on health-related quality of life of dizzy patients.     

Testing a model of health-related quality of life in women living with HIV infection

Purpose

The purpose of this secondary analysis was to test Ferrans et al.’s (J Nurs Scholarsh 37(4):336–342, 2005) revised model of health-related quality of life (HRQoL) (2005) modified from the Wilson and Cleary (J Am Med Assoc 273(1):59–65, 1995) model on women living with HIV. The primary aim was to test this model, examining the relations among the five central components (biological function, symptoms, functional status, general health perceptions, and HRQoL). The secondary aim was to explore the individual (age, children, race, marital status, education) and environmental (HIV-related stigma, social support) characteristics that may impact the main components of the model.

Methods

This study employed a cross-sectional correlational design using baseline data from 178 women living with HIV/AIDS who participated in one of the two independent randomized controlled trials designed to enhance HIV medication adherence. Path analysis using structural equation modeling was used to examine the hypothesized multivariate relations proposed in the revised Wilson and Cleary (J Am Med Assoc 273(1):59–65, 1995) model of HRQoL.

Results

While the revised model did not fit, exploratory post hoc modified models with a path from depressive symptoms to overall general health had an adequate model fit. Women with lower depressive symptoms (r = ?.457, p < .01), lower HIV-related stigma (r = ?.462, p < .01), higher social support (r = .413, p < .01), higher physical functioning (r = .350, p < .01), and higher general health perceptions (r = .537, p < .01) had higher overall HRQoL.

Conclusions

The results of this study have the potential to assist healthcare professionals in improving HRQoL for women living with HIV/AIDS.

     

HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD)

Purpose

Huntington disease (HD) is a chronic, debilitating genetic disease that affects physical, emotional, cognitive, and social health. Existing patient-reported outcomes (PROs) of health-related quality of life (HRQOL) used in HD are neither comprehensive, nor do they adequately account for clinically meaningful changes in function. While new PROs examining HRQOL (i.e., Neuro-QoL—Quality of Life in Neurological Disorders and PROMIS—Patient-Reported Outcomes Measurement Information System) offer solutions to many of these shortcomings, they do not include HD-specific content, nor have they been validated in HD. HDQLIFE addresses this by validating 12 PROMIS/Neuro-QoL domains in individuals with HD and by using established PROMIS methodology to develop new, HD-specific content.

Methods

New item pools were developed using cognitive debriefing with individuals with HD, and expert, literacy, and translatability reviews. Existing item banks and new item pools were field tested in 536 individuals with prodromal, early-, or late-stage HD.

Results

Moderate to strong relationships between Neuro-QoL/PROMIS measures and generic self-report measures of HRQOL, and moderate relationships between Neuro-QoL/PROMIS and clinician-rated measures of similar constructs supported the validity of Neuro-QoL/PROMIS in individuals with HD. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new item banks for Chorea, Speech Difficulties, Swallowing Difficulties, and Concern with Death and Dying, with corresponding six-item short forms. A four-item short form was developed for Meaning and Purpose.

Conclusions

HDQLIFE encompasses both validated Neuro-QoL/PROMIS measures, as well as five new scales in order to provide a comprehensive assessment of HRQOL in HD.

     

Adolescent health-related quality of life and perceived satisfaction with life

Purpose: To explore the relationship between perceived satisfaction with life and health-related quality of life (HRQOL) in a state-wide sample of 13–18-year-old adolescents (n=4914) in South Carolina, USA. Methods: Questions were added to the self-report Centers for Disease Control (CDC) Youth Risk Behavior Survey (YRBS) asking about perceived life satisfaction in six domains (self, family, friends, living environment, school, and overall) and HRQOL (self-rated health; and the number of poor physical health days, poor mental days, and activity limitation days during the past 30 days). Results: Adjusted logistic regression analyses and multivariate models constructed separately revealed that self-rated health, poor physical days (past 30 days), poor mental health days (past 30 days), and activity limitation days (past 30 days) were significantly related (p < 0.05) to reduced life satisfaction, regardless of race or gender. Moreover, as the number of reported poor health days increased, the greater the odds of reporting life dissatisfaction. Conclusions: This is the first study to document the relationship between poor physical health and perceived life satisfaction. This adds to the mounting evidence that life satisfaction is related to a variety of adolescent health behaviors and that life satisfaction may add additional information in longitudinal databases that track adolescent health because it appears to be related to HRQOL.