Measuring quality of life in children with asthma

The Paediatric Asthma Quality of Life Questionnaire contains 23 items that children with asthma have identified as troublesome in their daily lives. The aim was to evaluate the measurement properties of the questionnaire. The study design consisted of a 9 week single cohort study with assessments at 1, 5 and 9 weeks. Patients participating in the study were fifty-two children, 7–17 years of age, with a wide range of asthma severity. At each clinic visit, a trained interviewer administered the Paediatric Asthma Quality of Life Questionnaire, the Feeling Thermometer, a clinical asthma control questionnaire and measured spirometry. For 1 week before each clinic visit, patients recorded morning peak flow rates, medication use and symptoms in a diary. The Paediatric Asthma Quality of Life Questionnaire was able to detect quality of life changes in those patients who altered their health status either as a result of treatemnt or natural fluctuations in their asthma (p<0.001) and to differentiate these patients from those who remained stable (p<0.0001). It was reproducible in patients who were stable (ICC=0.95), which also indicates the instrument's strength to discriminate between subjects of different impairment levels. The questionnaire showed good levels of both longitudinal and cross-sectional correlations with the conventional asthma indices and with general quality of life. The results were consistent across individual domains and different age strata. The Paediatric Asthma Quality of Life Questionnaire has good measurement properties and is valid both as an evaluative and a discriminative instrument. It captures aspects of asthma most important to the patient and adds additional information to conventional clinical outcomes.Supported through a grant from Fisons Canada     

Measuring quality of life in the parents of children with asthma

Parents and primary caregivers of children with asthma are limited in normal daily activities and experience anxieties and fears due to the child's illness. We have developed the Paediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ) to measure these impairments. The objective of this study was to evaluate the measurement properties of the PACQLQ. A 9-week single cohort study was conducted with assessments at 1, 5 and 9 weeks. Participants in the study were primary caregivers of 52 children (age 7–17 years) with symptomatic asthma, recruited from notices in the local media and paediatric asthma clinics. Caregivers completed the PACQLQ, Impact-on-Family Scale and Global Rating of Change Questionnaires. Patients completed the Paediatric Asthma Quality of Life Questionnaire and an asthma control questionnaire. Spirornetry and -agonist use were recorded. The PACQLQ was able to detect quality of life changes in those caregivers who changed (p<0.001) and to differentiate these from the caregivers whose quality of life remained stable (p<0.0001). The PACQLQ is reproducible in subjects who are stable (ICC=0.84), and showed acceptable levels of longitudinal and cross-sectional correlations with the child's asthma status and health-related quality of life and with other measures of caregiver health-related quality of life. The PACQLQ functions well as both an evaluative and a discriminative instrument.     

Health-related quality of life in Australian children with asthma: lessons for the cross-cultural use of quality of life instruments

The development of Australian forms of the Childhood Asthma Questionnaires (CAQs) is reported. Focus group methods and psychometric analyses were used to establish the conceptual, semantic and technical equivalence of these forms with the UK versions. Both versions also provide for data collection from non-asthmatic youngsters. The internal consistency was found to be acceptable (Cronbach's 0.52–0.90) and the health-related quality of life (HRQoL) scores were found to vary with asthma severity (p<0.05). Comparison with the UK data revealed that the non-asthmatic scores were higher for Australian than British children (p<0.001) but that the scores for children with asthma did not differ between the two countries. It was only in the Australian sample that the group with asthma reported impaired HRQoL when compared to their healthy peers. These findings were interpreted in the context of cultural expectations of life quality and conclusions are presented regarding the importance of the gap between experience and expectations. The difficulties raised by the developmental and cultural issues inherent in paediatric HRQoL research were discussed.     

规范化管理及治疗对哮喘患者病情控制水平和生命质量的影响

目的 探讨规范化管理及治疗对哮喘患者病情控制水平及生命质量的影响.方法 门诊和病房收治的100例哮喘患者,按照人组顺序分为管理组和对照组,每组50例,对照组给予常规治疗,管理组在常规治疗的基础上纳入规范化管理,给予6个月的健康教育;比较治疗前后两组哮喘患者生命质量评分的变化及治疗后两组患者的哮喘控制率,应用统计学软件SPSS 17.0进行数据分析,计量数据以-x±s表示,组间比较采用t检验,率的比较用x2检验,P＜0.05为差异有统计学意义.结果 管理及治疗后6个月,管理组哮喘良好控制率为56％,对照组为22％,管理组哮喘控制率高于对照组（x2=12.15,P＜0.05）;管理及治疗6个月后,管理组活动受限、哮喘症状、心理状况、对刺激源反应、对自身健康关心各维度的得分和生命质量总分分别为（47.4±5.8）、（35.3±6.2）、（28.2±4.3）、（22.7±3.5）、（17.6±3.9）、（151.2±14.7）,对照组分别为（38.2±4.5）、（27.1±4.8）、（23.1±5.7）、（18.3±4.3）、（13.7±4.2）、（121.4±12.6）,管理组各项评分及生命质量总分均高于对照组（t=6.17,4.42,4.98,5.76,5.43,6.35,均P＜0.05）.结论 规范化管理及治疗能够高哮喘控制率,改善哮喘患者不良情绪状态,提高哮喘患者的生命质量.     

Health-related quality of life in asthma: A comparison between the St George's respiratory questionnaire and the asthma quality of life questionnaire

The aim of the study is to compare the performance of the Juniper Asthma Quality of Life Questionnaire (AQLQ) and the St George's Respiratory Questionnaire (SGRQ) in a sample of asthmatic patients, representative of a broad spectrum of asthma severity. We studied 116 patients with a mean age (SD) of 42.6 (18.3) year. Patients were assessed twice, at recruitment and after 2 months, to determine the reliability, validity and responsiveness of the AQLQ and the SGRQ. Both questionnaires showed good reliability coefficients (0.70) which reached the standards for comparison at individual level (0.90) in the case of activity, impacts and overall SGRQ scores as well as symptoms, activities and overall AQLQ scores. Both AQLQ and SGRQ were able to discriminate among groups of patients based on asthma severity and control and showed, except for the symptoms domain of the SGRQ, large (standardized response means >0.8) and significant changes in the group of patients that improved at follow-up. We conclude that the AQLQ and SGRQ have shown high reliability and validity and, with the exception of the SGRQ symptoms, a high level of responsiveness. In overall terms, not one of these instruments seems to behave better than the other.     

Measures of asthma control and quality of life: longitudinal data provide practical insights into their relative usefulness in different research contexts

Purpose  To further our understanding of the relationships between asthma control and health-related quality of life (HRQOL) and provide insights into the relative usefulness of various measures in different research contexts. We present a conceptual model and test it with longitudinal survey data. Methods  Participants recruited via population sampling and hospital Emergency Departments completed questionnaires every 6 months for up to 3 years. Measures included: sleep disturbance, use of short-acting beta agonists (SABA), activity limitation, urgent medical visits, hospital use, Marks’ Asthma Quality of Life Questionnaire (AQLQ-M) and the SF-36 Health Survey. Correlation analysis and multi-level models tested predictions from the conceptual model. Results  A total of 213 people with asthma aged 16–75 years provided 967 observations. Correlations between asthma control and asthma-specific HRQOL were stronger than those between asthma control and generic HRQOL. The asthma control variables explained 54–58% of the variance in asthma-specific HRQOL and 8–25% of the variance in generic HRQOL. Activity limitation was the main contributor to between-person variation, while sleep disturbance and SABA use were the main contributors to within-person variation. Conclusions  Sleep disturbance and SABA use may be most useful in evaluating treatment effectiveness, while activity limitation may be better when monitoring the impact of asthma in populations.     

Impact of smoking on asthma symptoms, healthcare resource use, and quality of life outcomes in adults with persistent asthma

Background Smoking habits of asthmatics are similar to those of the general population. However, little attention has been paid to the associations between smoking and asthma-related outcomes. Objective To evaluate relationships between cigarette smoking, asthma symptoms, and asthma-related resource utilization in subjects with persistent asthma. Method A stratified, random sample of adults from France, Germany, and the UK with persistent asthma were surveyed in 2001 through 2004. Statistical analyses compared asthma symptoms and healthcare resource utilization for cigarette smokers compared with those for non-smokers. Results Analyses included 1109 subjects with persistent asthma symptoms in 2001–2003 and 852 subjects with persistent asthma symptoms in 2004. Using multivariate analysis of data from eligible subjects in 2004 that did not have concomitant chronic obstructive pulmonary disease and adjusting for subjects’ baseline and demographic characteristics, cigarette smokers were more likely to experience nighttime symptoms (OR 1.46, 95% CI 1.07, 1.97 P = 0.015) and were more likely to use healthcare resources than were non-smokers (P ≤ 0.004). Findings were similar in a secondary analysis of subjects ≤55 years of age. Conclusions Cigarette smoking appears to be associated with more asthma symptoms and more ED visits and hospitalizations in adults with persistent asthma.     

Siblings of children with cystic fibrosis: quality of life and the impact of illness

Objective To asses self‐reported quality of life (QoL) and perception of impact of illness on siblings of children with cystic fibrosis (CF). Methods The Child Health Questionnaire was used to assess QoL. The Sibling Perception Questionnaire was used to assess impact of illness. Results Siblings of children with CF (n= 39) rated their QoL higher than siblings of healthy children on most QoL domains (e.g. Physical Functioning, Behavior, Mental Health). Siblings older than the child with CF reported a higher impact of CF than younger siblings. Perceived impact of illness was higher when the child with CF had been hospitalized or was intermittent or chronically infected with Pseudomonas aeruginosa. Conclusions Siblings of children with CF reported a good QoL. QoL and impact of illness were related to indices of CF severity. Insight into sibling‐issues helps CF teams to provide family‐oriented care.     

Discriminative aspects of two generic and two asthma-specific instruments: relation with symptoms, bronchodilator use and lung function in patients with mild asthma

The objective of this study was to compare the two most frequently used asthma-specific quality of life (QOL) questionnaires and two generic QOL questionnaires with clinical data in order to establish their ability to discriminate in asthma severity, also referred to as cross-sectional construct validity. We conducted a multicentre, randomized, placebo-controlled study investigating the long-term effects of the long-acting ß2-agonist formoterol in asthma patients using inhaled corticosteroids and short-acting ß2-agonists. Before randomization, the peak expiratory flow (PEF) and use of ß2-agonists for relief of symptoms were recorded twice daily for 1 month. At the end of the run-in period, the forced expiratory volume in 1s (FEV1), airway hyper-responsiveness (PC20 methacholine) and QOL were measured, using two asthma-specific questionnaires, the Asthma Quality of Life Questionnaire (AQLQ) and the Living with Asthma Quality of Life Questionnaire (LWAQ), as well as two generic questionnaires, the Short Form 36 (SF-36) and the Psychological General Well Being (PGWB) index. The quality of life of the patients (n=110) was only mildly impaired. The mean symptom score was 3.6 on a scale of 0-21 and the mean FEV1 was 65% of that predicted. The correlations between the QOL parameters and objective measures of asthma severity, such as the FEV1, PEF and PC20, were low (0.01-0.37). The correlations between the QOL parameters and subjective measures of asthma severity, such as symptom scores (range 0.26-0.65) and ß2-agonist use for the relief of symptoms (0.09-0.39), were higher. The correlations of the activity and symptoms domains of the AQLQ with diary-obtained symptom scores were r=0.50 (p[lessthan]0.0001) and r=0.65 (p[lessthan]0.0001), respectively. The correlation between the physical construct of the LWAQ and symptom scores was r=0.42 (p[lessthan]0.001) and that between the physical sumscore of the SF-36 and symptom scores was r=0.50 (p[lessthan]0.001). The correlation between the PGWB and symptom scores was r=0.41 (p[lessthan]0.001). The relation between the FEV1, PEF and PC20 and QOL was very low. The QOL measurements related well to the symptom scores. The AQLQ had a better cross-sectional construct validity than the LWAQ. The cross-sectional construct validity of the SF-36 was surprisingly high for this group of patients and the SF-36 performed better than the PGWB and LWAQ.     

The reproducibility of the Childhood Asthma Questionnaires: measures of quality of life for children with asthma aged 4–16 years

This paper reports the internal consistency and reproducibility of the Childhood Asthma Questionnaires, measures of quality of life and symptom distress in paediatric asthma. A total of 535 children aged 4–16 years completed age appropriate forms of the questionnaire, over 1-or 3-week intervals. Pearson correlation coefficients between 0.63 and 0.84 for subscales of the questionnaires indicated good test-retest reliability while intraclass correlation coefficients in a very similar range showed that scores also remained at the same level on the two occasions. Comparisons between children with asthma and healthy non-asthmatics indicate that these are likely to be true estimates of stability. Internal consistency varied widely but was higher for older children and longer subscales. Implications of the findings for the use of the questionnaires in the evaluation of new asthma treatments are discussed.     

健康呼吸中心对支气管哮喘患者管理和生活质量的影响

目的 评价健康呼吸中心管理与系统教育模式对哮喘防治及哮喘患者生活质量的影响.方法 对2005年9月至今就诊"健康呼吸中心",参加过"哮喘之家"活动的642名接受规范化治疗疗程3年以上的慢性持续哮喘患者,随机分为严格管理(依从性好)和松懈管理(依从性不好)两组,由哮喘专科门诊医生以面对面问卷方式调查门诊成年哮喘患者对疾病...     

The impact of asthma and aspirin sensitivity on quality of life of patients with nasal polyposis

Background: Nasal polyposis is not a life-threatening disease but may have a great impact on patients quality of life. Objective: To investigate the impact of nasal polyps on quality of life compared with the Spanish general population using the SF-36 questionnaire; and to evaluate the impact of asthma and aspirin sensitivity on quality of life in patients with nasal polyposis. Methods: We included 130 patients with nasal polyposis and evaluated nasal symptom, CT scan, polyp size, and quality of life. Results: In comparison with the Spanish general population, patients with nasal polyposis had worse scores on all SF-36 domains except for physical functioning. Asthmatic patients with nasal polyposis had worse quality of life than nonasthmatic patients on role physical, body pain, and vitality (p < 0.05). The authors found no significant differences on quality of life, nasal symptoms, polyp size, and CT scan scores between patients with aspirin-tolerant and aspirin-sensitive asthma. Conclusion: These results suggest that nasal polyposis has a considerable impact on quality of life. Moreover, asthma but not aspirin sensitivity has an additional negative impact on the quality of life of patients with nasal polyposis.     

Health‐related quality of life and financial impact of caring for a child with Thalassaemia Major in the UK

Background Thalassaemia Major (TM) is a serious condition characterized by life‐long dependence on blood transfusions and chelation therapy. Our aim was to determine health‐related quality of life (HRQOL) in children with TM living in the UK, and the impact of caring for a child receiving National Health Service treatment on family finances. Methods This was a cross‐sectional assessment of HRQOL in children (n= 22) with TM aged 8–18 years. Children were recruited from three UK Paediatric Haematology and Bone Marrow Transplant centres. Mothers completed measures of their child's HRQOL [PedsQL? 4.0 (Measurement Model for the Pediatric Quality of Life Inventory?, James W. Varni PhD, PedMetrics?, Quantifying the Qualitative SM, Copyright 1998–2009)] and behaviour (Strengths and Difficulties questionnaire), and the impact of caring for the child on family finances. Results Child behaviour was within the normal range but child HRQOL was significantly lower than population norms. Family financial concerns associated with TM were associated with poorer child HRQOL (P= 0.020). Conclusions Thalassaemia Major poses a considerable challenge to child HRQOL, well documented in areas of the world where TM is prevalent. Despite the availability of National Health Service care and financial benefits our study suggests a similar burden in the UK.     

The role of coping strategies in quality of life of adolescents with asthma

This study aimed to determine which coping strategies are associated with better quality of life (QOL) in adolescents with asthma. Furthermore, because coping can mediate the effects of health stressors on QOL, this study also examined the indirect effect of asthma severity on QOL via coping. Between January and May 2003, 553 Dutch adolescents with asthma (aged 12–16 years) completed questionnaires assessing coping strategies, symptom severity, overall QOL and positive QOL domain (positive effects of asthma domain). The relations between symptom severity, coping strategies and QOL were tested with structural equation modelling (SEM). Symptom severity affected overall and positive QOL, both directly and indirectly via coping. The coping strategies restricted lifestyle and worrying about asthma were associated with poorer overall QOL. The use of the coping strategies restricted lifestyle, positive reappraisal, and information seeking was related to increased scores on the positive QOL domain, whereas hiding asthma was related to lower scores on the positive QOL domain. The findings of this study suggest that coping mediates the effect of symptoms of asthma on QOL among adolescents with asthma. Several suggestions for interventions to improve asthma-specific QOL are discussed.     

Informal caregivers of people with an intellectual disability in England: health,quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well‐being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population‐representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio‐demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care‐giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar‐sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well‐being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population‐representative data. Poverty and long care‐giving hours may make caregivers more susceptible to negative well‐being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.     

Coping styles, psychological functioning and quality of life in children with asthma

BACKGROUND: Previous research suggests that children dealing with the asthma are at a greater risk for experiencing psychological maladjustment than children without asthma. Research also suggests that coping is a factor in psychological adaptation to chronic stressors such as physical illnesses. The question as to how coping relates to psychological functioning and quality of life in the paediatric asthma population has not yet been answered. The objective of the current study was to examine the relationships among coping, psychological functioning and quality of life in children diagnosed with asthma and to investigate the relationship that mothers' quality of life has with these variables. METHODS: Forty-seven youths (aged 8-15 years) diagnosed with asthma completed measures of coping with asthma and quality of life. Each youth's mother completed measures of her child's coping, psychological functioning and her own quality of life. RESULTS: Mothers and children with asthma both reported that children used significantly more approach coping than avoidant coping when dealing with asthma. Three regression analyses indicated that avoidant coping negatively predicted psychological functioning, child's quality of life and mother's quality of life. Bivariate analyses also indicated a positive relationship between child's quality of life and mother's quality of life. CONCLUSIONS: Results indicate that, in children with asthma, coping style plays an important role in the child's psychological functioning and quality of life and mother's quality of life. Therefore, it is recommended that type of coping be assessed when developing comprehensive treatment plans for children with asthma. Further research is needed to determine the efficacy of focused coping interventions in improving quality of life and psychological functioning in children with asthma.     

云南省傣族居民高血压患病现状及其对生命质量影响

目的了解云南省傣族居民高血压患病现状及其对生命质量的影响,为有效治疗和管理高血压以及提高少数民族居民高血压患者生命质量提供参考依据。方法于2014年1月,采用分层随机抽样方法在云南省德宏州芒市抽取1 397名≥35岁傣族居民进行问卷调查和血压测量。结果云南省芒市傣族居民高血压患病率为55.2%;傣族居民高血压患者生理功能、生理职能、躯体疼痛、总体健康、生命力、情感职能、精神健康、生理健康水平和心理健康水平得分分别为（86.25±18.79）、（75.52±39.45）、（79.41±18.20）、（56.83±16.97）、（73.17±11.54）、（89.28±29.08）、（79.90±10.12）、（74.50±18.69）、（83.87±10.69）分,均低于非高血压者的（92.76±13.99）、（87.18±30.11）、（84.31±16.93）、（62.71±14.91）、（75.08±9.23）、（93.93±22.44）、（80.94±8.61）、（81.74±14.18）、（85.97±8.45）分（均P<0.05）;高血压患者和非高血压者社会功能得分分别为（93.11±11.35）和（93.95±9.83）分,差异无统计学意义（P>0.05）。结论云南省芒市傣族居民高血压患病率较高,高血压患病可降低傣族居民的生命质量。     

A new tool for monitoring asthma outcomes: The ITG Asthma Short Form

Background: Asthma treatment has broadened from managing clinical markers to incorporate factors that are most meaningful to patients, collectively called health-related quality of life (HQL). Objective: To develop an asthma-specific HQL tool, meeting demands for brevity, usefulness and measurement precision. Methods: The 20-item Sydney Asthma Quality of Life Questionnaire (AQLQ) and six additional items were studied using factor analysis, reliability and validity tests among asthma patients 14 and older. Results: The 15-item Integrated Therapeutics Group Asthma Short Form (ITG-ASF) retains the validity of the AQLQ with improved scaling properties and interpretability. The ITG-ASF yields 6 scores: Symptom-Free Index, Functioning with Asthma, Psychosocial Impact of Asthma, Asthma Energy and Asthma-Confidence in Health and a Total. All items correlated 0.40 or higher with their hypothesized scales and passed discriminant validity tests, with scaling success rates from 75 to 100%. Reliability exceeded the minimum of 0.70 for group comparisons. Ceiling and floor effects were acceptable. Scales were valid in relation to changes in asthma severity and lung function. The best predictor of asthma severity (National Asthma Education and Prevention Program (NAEPP) staging) was the Symptom-Free Index. A Spanish translation is available, Chinese-American is forthcoming. The reading grade level is 4.8. Conclusions: Development of the ITG-ASF was a data-driven process maximizing measurement precision and breadth while minimizing burden. The ITG-ASF is a brief, comprehensive and empirically valid tool that complements traditional markers of the outcomes of asthma care.     

健康教育与规范治疗对哮喘儿童生命质量的影响

目的 探索健康教育与规范治疗对哮喘儿童生命质量的影响.方法 对本院110例哮喘儿童进行为期半年的门诊治疗,按是否接受规范治疗及教育管理分为2组,接受规范治疗及教育管理者为规范治疗组(60例),未拟行规范治疗及教育管理者为对照组(50例).规范治疗组加强教育管理,严格按照全球哮喘防治创议(GINA)方案制定相应的治疗措施进行分级治疗,并定期随访;对照组治疗方法同规范治疗组,家长未进行哮喘教育管理培训,仅采取不定期随访及监管.对两组治疗前后临床效果及肺功能进行比较;并采用哮喘儿童生命质量量表调查问卷(PAQ LQ)及治疗依从性积分法对治疗前后患儿进行评估.结果 半年后随访,规范治疗组治疗效果明显优于对照组(P＜0.01).肺功能测定呼气最高流速(PEF)和第1秒时间肺活量(FEV1)规范治疗组较对照组亦明显增高(P＜0.01).规范治疗组半年后PAQLQ评分,总分及各维度得分均较治疗前明显提高(P＜0.01);两组相比各维度得分及总得分比较差异均有统计学意义(P ＜0.01,P＜0.05).规范治疗组治疗依从性积分[(12.4±2.1)分]高于对照组[(8.1±2.3)分](t=2.5,P ＜0.01).结论 健康教育与规范治疗能有效控制哮喘,治疗依从性好,复发率低,并能改善哮喘患儿的生命质量,值得推广应用.