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1.
There are only a few studies which have assessed the impact of asthma on the quality of life (QoL) compared to healthy children. In this study we wanted to compare QoL between asthmatic and healthy children in a population based setting. We surveyed 2159 children aged 11-15 yr with a Child Health Questionnaire; a generic QoL measure for children. This method gives a profile of the QoL consisting of 11 scales giving a range from 0 to 100. Asthma was defined based on the ISAAC questionnaire on asthma and asthma symptoms. In all, 192 children (8.9%) reported to have asthma diagnosed by a doctor and 61 of them (2.8% of all children) had been symptomatic during the previous month. Among these symptomatic children significantly impaired QoL was observed in 8 of the 11 scales compared to non-asthmatics. The most affected scales were those defining the physical part of child's QoL: Mean General Health scores were 60 for asthmatic and 74 for non-asthmatic children and mean Bodily Pain scores 71 and 86, respectively. Symptoms during longer periods were associated with an overall decreased QoL. In conclusion, a child's asthma impairs the QoL and especially the physical dimensions.  相似文献   

2.
AIM: To evaluate quality of life (QOL) in Indian children with bronchial asthma. METHODS: A disease-specific, locally appropriate QOL questionnaire was administered in asthmatic children and compared with FEV1, FVC, PEFR and asthma symptom score, on three occasions. RESULTS: QOL score had strong negative correlation with symptom score and weaker positive correlation with pulmonary function tests. CONCLUSION: Disease-specific QOL score correlates inversely with symptom score in children with bronchial asthma.  相似文献   

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Background

Asthma quality of life questionnaires are not readily incorporated into clinical care. We therefore computerised the Paediatric Asthma Quality of Life Questionnaire (standardised) (PAQLQ(S)) and the Paediatric Asthma Caregivers Quality of Life Questionnaire (PACQLQ), with a colour‐coded printed graphical report.

Objectives

To (a) assess the feasibility of the electronic questionnaires in clinical care and (b) compare the child''s PAQLQ scores with the parent''s score, physician''s clinical score and spirometry.

Methods

Children with asthma were given a clinical severity score of 1–4 (increasing severity) and then completed the PAQLQ(S) electronically (scores 1–7 for increasing quality of life in emotional, symptoms and activity limitation domains) followed by spirometry and physician review. Parents completed the PACQLQ. Inclusion criteria required fluent Hebrew and reliable performance of spirometry. Children with additional chronic diseases were excluded.

Results

147 children with asthma aged 7–17 years completed PAQLQs and 115 accompanying parents completed PACQLQs, taking 8.3 (4.3–15) and 4.4 (1.5–12.7) min, respectively (mean (range)). Graphical reports enabled physicians to address quality of life during even brief visits. Children''s (PAQLQ) and parents'' (PACQLQ) total scores correlated (r = 0.61, p<0.001), although the children''s median emotional score of 6.3 was higher than their parents'' 5.7 (p<0.001), whereas median activity limitation score was lower than their parents'': 5.0 and 6.8, respectively (p<0.001). No correlation was found with physician''s clinical score or spirometry.

Conclusions

Electronic PAQLQs are easy to use, providing additional insight to spirometry and physician''s assessment, in routine asthma care. Future studies must assess impact on asthma management.  相似文献   

5.
Background:  Health-related quality of life (HRQL) is perceived as an important health-care outcome. There are several systems for measuring the HRQL in adults but there are few such systems for children in Japan. Pediatric Quality of Life Inventory (PedsQL) is valid and demonstrates excellent reliability in the USA, Europe, and Asian countries. The aim of the present study was therefore to develop the Japanese version of PedsQL.
Methods:  A two-step procedure was performed: translation of PedsQL, followed by examination of the psychometric properties in a cross-sectional study. The feasibility, reproducibility, internal consistency reliability, factor structure, and concurrent and clinical validity were examined.
Results:  The internal consistency reliability of the Child Self-Reports of young children was slightly low, but that of the Child Self-Reports of school children and adolescents was good. Further, all the Parent Proxy-Reports had excellent alphas. The Japanese version had satisfactory feasibility for all age ranges. The intercorrelation of subscales supported the multidimensional factor structure. Clinical validity was examined by analysis of variance performed for four groups with different health conditions (healthy, chronic needs only, mental condition only, and chronic needs and mental condition). The scores of each functioning scale differed among the four groups, with the healthy group having the highest scores for all functioning scales.
Conclusions:  The Japanese version of PedsQL can be applied in community and school health settings in Japan. Because children with chronic health needs and mental conditions were included, the Japanese version of PedsQL is expected to be useful in clinical settings.  相似文献   

6.
Validation of an asthma knowledge questionnaire   总被引:3,自引:0,他引:3  
Asthma is responsible for much morbidity and mortality, which might be decreased by increasing parental and patient knowledge about asthma. This report describes the development and validation of an asthma knowledge questionnaire for use in the assessment of asthma knowledge. Two groups of respondents were examined. One group was designated 'high knowledge' and the other 'low knowledge'. The questionnaire had a maximum possible score of 31. The mean score of 69 'high' knowledge parents was 25.3 (median 25, range 18-31). By contrast, the mean score of 69 'low' knowledge parents was 13.0 (median 13, range 0-21). The difference between the two groups was statistically significant (P less than 0.0001). The questionnaire results were reproducible (tau = 0.94, P less than 0.01). Demographic characteristics such as education and socio-economic status were not important confounding variables. Face and content validity of the questionnaire were based on reference to published experience. Concurrent validity was demonstrated by the ability of the questionnaire to distinguish low from high knowledge parents. The questionnaire should prove to be a valuable research tool for the assessment of asthma knowledge either as part of an educational intervention or in a clinical situation.  相似文献   

7.
AIM: To identify the time required by children with cystic fibrosis (CF), diabetes or asthma to complete daily treatment tasks and the hassle they experienced when completing these tasks. To compare parent and child reports of daily treatment time and hassle. To investigate the relationship between treatment time and hassle, and (i) children's health-related quality of life (HRQL); and (ii) disease severity. METHODS: 160 children aged 10-16 years with CF, type 1 diabetes, or asthma were followed over a 2-year period. Information about children's treatment time and hassle, and their HRQL was obtained from parents and children at baseline, 1-year and 2-year follow-up assessments. RESULTS: On average, children with CF reported spending 74.6 +/- 57.0 min completing treatment tasks, children with diabetes spent 56.9 +/- 27.8 min and children with asthma spent 6.4 +/- 9.3 min. Parents reported that children spent less time that was reported by their children. Over the two years, parent and child reports describing treatment time for children with CF did not vary significantly (P = 0.3). Treatment time for children with diabetes increased (P = 0.02) whereas that for children with asthma reduced (P = 0.001). The level of hassle experienced by children when completing individual treatment tasks was low for all three conditions. There was no significant relationship between treatment time and children's HRQL. CONCLUSION: Children with CF or diabetes spent a substantial amount of time each day completing the treatment tasks. Although this was not related to HRQL, it could impact the ability to comply with complex and all home-based-therapies for some children.  相似文献   

8.
目的探讨儿童阻塞性睡眠呼吸障碍疾病特异性生活质量调查表(OSD-6)在儿童睡眠呼吸紊乱评价中的作用。方法前瞻性对照临床研究,61例OSD-6调查评分提示为阻塞性睡眠呼吸暂停(OSA)的儿童,平均年龄(6.4±0.61)岁,女28例,男33例。其中多导睡眠监测(PSG)阳性32例均经腺样体和扁桃体切除术(AT)治疗,PSG阴性儿童29例随机分别经AT治疗(n=15)或非手术治疗(n=14)。1~3个月后以同样的方式进行评价。结果平均随访时间为(2.8±1.3)个月。PSG阴性AT组儿童术后OSD-6调查总评分平均下降49(极值32~61)分,与非手术组儿童的平均变化总分8(极值-9~21)分比较差异有统计学意义。PSG阴性AT组中的86.7%儿童术后提示为临床无症状者(OSD-6调查总评分20分),而非手术组为14.2%两者比较差异有统计学意义。所有经手术治疗的儿童,术后身体症状的评分和睡眠障碍的评分明显下降。结论OSD-6调查评分提示为OSA但PSG为阴性的患儿,在AT治疗后生活质量评分可以明显改善。该调查表能够反映出SDB儿童手术治疗的疗效,可以作为睡眠呼吸障碍(SDB)儿童的临床评价和疗效观察的工具。  相似文献   

9.
Background: The purpose of the present study was to investigate the effects of bodyweight on health-related quality of life (QOL) in children.
Methods: A questionnaire to assess health-related QOL was developed and completed by 242 primary school children and 180 junior high school students in Morioka, Japan. Subjects were classified by obesity index into three groups as follows: underweight, ≤−20% obesity index ( n  = 13); normal weight, between +20% and −20% ( n  = 354); and overweight, ≥+20% ( n  = 55). The overall QOL score and the score of each domain were compared among the three groups and in each gender.
Results: Overall QOL scores did not differ significantly among the three groups. The scores for the domain of 'strength, diligence and self-esteem' in the underweight and overweight groups were significantly lower than those for the normal-weight group overall and for girls ( P  < 0.01). Scores for the 'school' domain in the underweight group were significantly lower than those for the overweight group overall and for boys ( P  < 0.05).
Conclusions: Children, except those of normal bodyweight, have low scores in some domains of health-related QOL, suggesting the importance of considering the effects of bodyweight on QOL in programs aimed at further understanding under- or overweight children and adolescents.  相似文献   

10.
11.
癫癎儿童健康相关生活质量研究   总被引:4,自引:0,他引:4  
为探讨癫痫儿童的健康相关生活质量(HRQOL)及其影响因素,采用澳大利亚癫痫儿童生活质量父母问卷(QOLCE)对101例癫痫儿童进行生活质量的评估,以探讨影响因素并与正常儿童进行比较。结果表明,癫痫儿童的生活质量明显低于正常儿童,年龄、起病年龄、发作频率、发作类型、病程,抗癫痫药物及智力等均影响患儿的生活质量。提示对癫痫儿童应采取综合治疗措施,重视患儿的心理健康,才能提高其生活质量。  相似文献   

12.
Quality of life (QoL) or, rather, health-related QoL, is currently regarded as a crucial aspect of the general well-being of patients and, in consequence, of the effects of a disease and its treatment. This is particularly true for respiratory allergy (asthma and rhinitis), which are chronic diseases and also for sinusitis (rhinosinusitis). A number of questionnaires (instruments), either generic or specific, have been developed and validated to assess the QoL in adults and children, for asthma and rhinitis, whereas there are few specific instruments for chronic rhinosinusitis. The literature provides strong evidence of the effects of allergic rhinitis, asthma and their treatments on QoL in paediatric patients, as well as in adults, whereas the number of experimental data on rhinosinusitis is limited, especially in children. Clinical trials evidenced some controversial points, mainly the weak correlation existing between QoL and traditional objective parameters. It has become clear that the QoL questionnaires measure the aspects of the disease that partially differ from the routinely evaluated parameters and that QoL should integrate, not replace, the objective measurements.  相似文献   

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14.
Epidemiological evaluations of the prevalence of asthma are usually based on written questionnaires (WQs) in combination with validation by clinical investigation. In the present investigation, we compared parental assessment of asthma among their preschool children in response to a WQ with the corresponding medical records in the same region. An International Study of Asthma and Allergies in Childhood (ISAAC)-based WQ was answered by 75% of the parents of 6295 children aged 1-6 yr. Clinically diagnosed asthma, recorded in connection with admissions to the hospital or a visit to any of the outpatient clinics in the same region, were analysed in parallel. Finally, a complementary WQ was sent to the parents of children identified as asthmatic by either or both of this approaches. In response to the WQ 5.9% were claimed to suffer from asthma diagnosed by a doctor. According to the medical records, the prevalence of clinically diagnosed asthma was 4.9%. The estimated prevalence among children requiring treatment for their asthma was 4.4%. The sensitivity of the WQ was 77%, the specificity 97.5%. In the 1-2 yr age group the sensitivity was only 22%. This WQ was able to identify 54% of the children with a medical record of asthma. Forty percent of the children claimed by their parents to be asthmatic had no medical record of asthma. An ISAAC-based parentally completed WQ provided an acceptable estimation of the prevalence of asthma in children 2-6 yr of age, although only half of the individual patients identified in this manner are the same as those identified clinically.  相似文献   

15.
Objective: To assess quality of life changes in pediatric asthmatic patients switched into a single inhaler device of BudesonideJFormoterol.Methods: Thirty pediatric patients (ages 6–15 years) with moderate to severe chronic asthma previously treated with inhaled beclometasone dipropionate at a daily dose of ≥400 μg were selected to participate in an open label study. At the baselinephase (one month), pulmonary function tests (PFTs), indicators of asthma control, and a quality of life assessment (using a special questionnaire) were evaluated. Patients were initiated on a single inhaler device containing budesonide 160 μg/formoterol 4.5 μg, one inhalation twice daily instead of their previous inhaled corticosteroid and followed for two months. PFTs, indicators of asthma control, and a quality of life assessment were evaluated at each visit.Results: After switching to the new therapy, patients showed significant changes towards better quality of life in all aspects. The overall score dropped from 1.75±0.04 to 0.80 ±0.07 (mean ±SEM), p<0.001 (Score scale varies between 0: excellent to 2: very bad Health related quality of life). There was an improvement in the PFTs, where the FEV1% improved from 62.7±2.8 to 87.4 ±4.6 (mean ±SEM), and the FVC% improved from 83.2 ±3.5 to 101.9 ±5.3 (mean ±SEM), p <0.001, and better control of asthma.Conclusion: Switching treatment from beclomethasone dipropionate to budesonideJformoterol combination appeared to improve quality of life in the patient population evaluated and in the appropriate clinical indices.  相似文献   

16.

Background

Sickle cell disease (SCD) is characterized by vaso-occlusive crises (VOCs) that impair the health-related quality of life (HRQoL). The aim of this study is to evaluate the impact of hospitalization for VOCs on HRQoL in children with SCD over time.

Methods

In this longitudinal cohort study, children aged 8–18 years diagnosed with SCD at the Amsterdam UMC were included between 2012 and 2021. HRQoL was annually measured as part of standard care using the Pediatric Quality of Life Inventory. The impact of hospitalization for VOC on HRQoL was evaluated using linear mixed models 3, 6, 9, and 12 months after hospitalization. The effect of frequency of hospitalization for VOC on HRQoL was evaluated over the last 12 months.

Results

In total, 94 children with SCD were included with a median age of 11.8 years (interquartile range [IQR]: 9–14). Thirty-seven patients (39%) had been hospitalized for a VOC. Hospitalization for VOC led to a decrease of 3.2–4.8 points in total HRQoL compared to patients without hospitalization, most pronounced 3 months after hospitalization. Recurrent admission for VOC in the last 12 months was associated with a decrease of 2.3 points in total HRQoL (p = .04). The most affected subscale was physical functioning.

Conclusion

The adverse effects of hospitalization for VOC in children with SCD persist up to 12 months after hospitalization. After hospitalization for VOC, extra attention and support for its negative impact on HRQoL are recommended. This study also underlines the importance of systematically measuring HRQoL, allowing clinicians to intervene accordingly.  相似文献   

17.
The aim of our study is to determine and describe the current short-term health-related quality of life of recent adult patients who had bronchial asthma in childhood. Our objective was to investigate if symptom control in bronchial asthma could be in conflict with general quality of life. We made a follow-up study of 152 patients (105 male, 47 female) over the age of 30 (31-55 yr) who were allergic asthmatics in childhood. The patients' current symptoms and short-term quality of life were evaluated by a questionnaire. The patients developed asthmatic symptoms by age 4.4 (0.5-13) years on the average. Now 60% (91 persons) have no symptoms. They became symptom-free between 3 and 41 yr of age (mean = 14.2 +/- 8.2). Amongst the currently asthmatic patients (58 patients, 38%), 34 patients (22%) belong to the Global Initiative for Asthma (GINA) I, nine patients (6%) to the GINA II, five patients (3.3%) to the GINA III, and five patients (3.3%) to the GINA IV classification. Five patients (3.3%) did not specify their own symptoms. Three persons (2%) did not answer this question. Symptomatic patients reached 5.28 on the Juniper Asthma Quality of Life Questionnaire, while their asymptomatic peers scored statistically higher with 6.8 on the scale. Amongst the symptomatic patients, the most limited areas were: 'bothered by heavy breathing', 'had to avoid a situation or environment because of dust', 'experienced difficulty breathing out as a result of asthma', 'experienced asthma symptoms as a result of the weather or air pollution outside'. They were least 'concerned about medication', 'frustrated as a result of their asthma', they were least limited in 'going outside because of the weather or air pollution'. The most problematic areas for the symptom-free patients were 'had to avoid a situation or environment because of dust', 'had to avoid a situation or environment because of cigarette smoke', 'experiencing asthma symptoms as a result of being exposed to dust and the 'need to clear throat'. It seems that having no asthma symptoms is not equal to having a good quality of life for asthmatic patients. Moreover, symptom control in bronchial asthma is in conflict with quality of life, as many prophylactic measures to prevent exposure to allergens also restrict the patient's life.  相似文献   

18.
BackgroundImprovement of the quality of life (QOL) for children with epilepsy is one of the most important therapeutic goals. It is widely acknowledged that in adults with epilepsy one of the best QOL predictors is psychiatric comorbidity. In children with epilepsy, however, it is not clear whether psychiatric comorbidity impairs QOL.AimsThe aim of this study was to evaluate QOL in children with epilepsy and to identify the strongest predictors of the same.MethodsA total of 28 enrolled patients completed the Questionnaire for Measuring Health-Related Quality of Life in Children (KINDL-R) and 3 assessments of clinical status: the Depression Self-Rating Scale for Children (DSRS-C), the Children Manifest Anxiety Scale (CMAS), and the Side Effects and Life Satisfaction (SEALS). Various demographic and clinical factors were analyzed as possible predictors of KINDL-R scores.ResultsThe strongest predictor of QOL was the total DSRS-C score (r = −0.69, p < 0.01), which also predicted physical (r = −0.58, p < 0.01) and emotional wellbeing (r = −0.53, p < 0.05) subscale scores.ConclusionsSymptoms of depression were more predictive of QOL than were seizure type, seizure duration, number and adverse effects of AEDs, or anxiety. Number of AEDs did have an effect, just not as prominent as symptoms of depression.  相似文献   

19.
Assessment of quality of life in children with peanut allergy   总被引:5,自引:0,他引:5  
Children with a peanut allergy (PA) are faced with food and social restrictions due to the potentially life-threatening nature of their disease, for which there is no cure or treatment. This inevitably impacts upon their quality of life (QoL). QoL of 20 children with PA and 20 children with insulin-dependent diabetes mellitus (IDDM) was measured using two disease-specific QoL questionnaires (higher scores correspond to a poorer QoL). One questionnaire was designed by us and the other was adapted from the Vespid Allergy QoL questionnaire. We gave subjects cameras to record how their QoL is affected over a 24-h period. Response rates for both questionnaires were 100%. Mean ages were 9.0 and 10.4 years for PA and IDDM subjects, respectively. Children with a PA reported a poorer quality of life than children with IDDM: mean scores were 54.85 for PA subjects and 46.40 for diabetics (p = 0.004) in questionnaire 1 and 54.30 and 34.50 (p≤0.001) in questionnaire 2. PA children reported more fear of an adverse event and more anxiety about eating, especially when eating away from home. Photographs fell into seven common categories: food, management, environment, away from home, physical activities, restaurant and people. Most photographs related to food and management issues and revealed difficulties for both groups regarding food restrictions. PA subjects felt more threatened by potential hazards within their environment, felt more restricted by their PA regarding physical activities, and worried more about being away from home. However, they felt safe when carrying epinephrine kits and were positive about eating at familiar restaurants. The QoL in children with PA is more impaired than in children with IDDM. Their anxiety may be considered useful in some situations, promoting better adherence to allergen avoidance advice and rescue plans.  相似文献   

20.
Abstract:  Participation in PA is often diminished in children with CKD. Limited research exists on exercise tolerance/capacity but no studies to date have investigated lifestyle PA and its determinants in these children. The aim of this study was to investigate level of PA and potential physiological and psychological associations in a group of pediatric KTx recipients compared with CS. Twenty KTx and 33 CS participated. PA was measured by PAQ. HRQOL (PedsQL 4.0) and CY-PSPP were also measured. BMI and WC was recorded in all subjects; GFR, BP and immunosuppressants in KTx. Body measurements indicated the two groups were similar: 25% KTx and 24% CS had BMI >85th percentile. KTx were less physically active than CS in total exercise minutes (p = 0.005). CS reported higher HRQOL than KTx (p = 0.001). Higher perceptions of HRQOL were significantly correlated with higher number of steps/day in both groups (p = 0.034). KTx showed significantly lower perceptions of sports competence (p = 0.007) and physical conditioning (p = 0.001) than CS. Higher PAQ activity scores were significantly correlated with higher perceptions of body attractiveness (p = 0.019), Sport (p = 0.003) and Conditioning (p = 0.001). These results suggest that PA may play a role in overall well-being and HRQOL in KTx.  相似文献   

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