Development of a parent-proxy quality-of-life chronic cough-specific questionnaire: clinical impact vs psychometric evaluations

BACKGROUND: Chronic cough affects at least 7% of children, and the impact of this on families is significant. Although adult cough-specific quality-of-life (QOL) instruments have been shown to be a useful cough outcome measure, no suitable cough-specific QOL for parents of children with chronic cough exists. This article compares two methods of item reduction (clinical impact and psychometric) and reports on the statistical properties of both QOL instruments. METHOD: One hundred seventy children (97 boys and 73 girls; median age, 4 years; interquartile range, 3 to 7.25 years) and one of their parents participated. A preliminary 50-item parent cough-specific QOL (PC-QOL) questionnaire was developed from conversations with parents of children with chronic cough (ie, cough for > 3 weeks). Parents also completed generic QOL questionnaires (eg, Pediatric Quality of Life Inventory, version 4.0 [PedsQL4.0] and the 12-item Short Form Health Survey, version 2 [SF-12v2]). RESULTS: The clinical impact and psychometric method of item reduction resulted in 27-item and 26-item PC-QOL questionnaires, respectively, with approximately 50% of items overlapping. Internal consistency among the final items from both methods was excellent. Some evidence for concurrent and criterion validity of both methods was established as significant correlations were found between subscales of the PC-QOL questionnaire and the scales of the SF-12v2 and PedsQL4.0 scores. The PC-QOL questionnaire derived from both methods was sensitive to change following an intervention. CONCLUSION: Chronic cough significantly impacts on the QOL of both parents and children. Although the PC-QOL questionnaires derived from a clinical impact method and from a psychometric method contained different items, both versions were shown to be internally consistent and valid. Further testing is required to compare both final versions to objective and subjective cough measures.     

Quality of life in haemophilia A: Hemophilia Utilization Group Study Va (HUGS-Va)

Summary. This study describes health‐related quality of life (HRQoL) of persons with haemophilia A in the United States (US) and determines associations between self‐reported joint pain, motion limitation and clinically evaluated joint range of motion (ROM), and between HRQoL and ROM. As part of a 2‐year cohort study, we collected baseline HRQoL using the SF‐12 (adults) and PedsQL (children), along with self‐ratings of joint pain and motion limitation, in persons with factor VIII deficiency recruited from six Haemophilia Treatment Centres (HTCs) in geographically diverse regions of the US. Clinically measured joint ROM measurements were collected from medical charts of a subset of participants. Adults (N = 156, mean age: 33.5 ± 12.6 years) had mean physical and mental component scores of 43.4 ± 10.7 and 50.9 ± 10.1, respectively. Children (N = 164, mean age: 9.7 ± 4.5 years) had mean total PedsQL, physical functioning, and psychosocial health scores of 85.9 ± 13.8, 89.5 ± 15.2, and 84.1 ± 15.3, respectively. Persons with more severe haemophilia and higher self‐reported joint pain and motion limitation had poorer scores, particularly in the physical aspects of HRQoL. In adults, significant correlations (P < 0.01) were found between ROM measures and both self‐reported measures. Except among those with severe disease, children and adults with haemophilia have HRQoL scores comparable with those of the healthy US population. The physical aspects of HRQoL in both adults and children with haemophilia A in the US decrease with increasing severity of illness. However, scores for mental aspects of HRQoL do not differ between severity groups. These findings are comparable with those from studies in European and Canadian haemophilia populations.     

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??ObjectiveTo assess the efficacy of pharmacological prophylactic treatments for migraine in children,and to study an appropriate and safe therapy benefitial to pediatric migrainuer.MethodsPedsQl 4.0 and headache index were used to assess the effect of Sibelium (Flunarizine) and valproate (VPA) after provided to the children with migraine.The two groups of 200 moderate migrainuers were compared in a prospective,randomized,controlled and open-label trial.ResultsWith the aspect of comparision between sibelium and VPA,both showed effects on increasing the quality of life of children with migraine.Total score of with Sibelium increased from 68.27??11.06 to 82.07??5.36,while the group with VPA increased from (71.82??9.03) to (82.74??5.36).Each group P<0.05,within group P>0.05.The two pharmacological ways were also effective to decrease the index of headache.The group with Sibelium decrease from (10.45??7.25) to (2.20??2.75); the group with VPA decreased from (9.81??7.58) to (2.03??2.50)??Each group P<0.05,within group P>0.05.Comparing the two groups,there were no significance about quality of life and headache index.ConclusionChildren with migraine benefit from appropriate prophylactic therapy.Sibelium and VPA could also be used for children with migraine.     

The Quality of Life of Children and Adolescents with X-Linked Agammaglobulinemia

Introduction  The health-related quality of life in X-linked agammaglobulinemia was investigated in 25 children and adolescents patients through the Italian version of Pediatric Quality of Life Inventory 4.0 Generic Core Scale for patients aged less then 18 years, comparing child perception to that of the parents and the physician’s evaluation. The data were compared with the ones of 80 healthy controls and the literature data of a group of patients with rheumatic diseases. Discussion  The agammaglobulinemia subjects perceived a lower global quality of life than the healthy subjects, but significantly higher than the rheumatic diseases controls. The clinical relevance of health-related quality of life assessment in X-linked agammaglobulinemia pediatric patients is discussed. Annarosa Soresina and Renata Nacinovich contributed equally to this article.     

不同康复治疗方法对脑性瘫痪儿童及其家庭生存质量的影响

目的:通过家庭康复与医院康复的随机交叉试验,观察家庭康复对脑性瘫痪儿童及其家长生存质量的影响和家庭康复对患儿家庭经济的影响。方法:纳入2008年7月～2010年2月在广州中医药大学附属南海妇产儿童医院住院和家庭康复治疗的脑性瘫痪患儿40例,随机分两组,进行医院康复和家庭康复的交叉对照研究,以3个月为1个阶段,共治疗6个月。进行治疗前后自身对照及组间对比。结果:甲组儿童家庭康复前后、医院康复前后生理功能领域及医院康复前后生存质量总分对比有统计学意义,乙组儿童医院康复前后学校表现对比、家庭康复前后生理功能及总体生存质量对比具有统计学意义,甲组家庭康复治疗后、乙组医院康复治疗后儿童及家长生存质量各能区比较无统计学意义。两组家长家庭康复前后、医院康复前后生存质量各能区比较均无统计学意义。两组儿童家庭康复费用远低于医院康复费用。结论:家庭康复可有效促进患儿生存质量的提高,短期家庭康复对家长生存质量影响不明显;家庭康复的经济花费明显低于医院康复治疗。家庭康复是一种经济、有效、实用、方便的康复方式。     

The Quality of Life in Care questionnaire: An assessment of feasibility,test–retest reliability and responsiveness in a clinical sample

This study determined the feasibility, test–retest reliability and responsiveness of the Quality of Life in Care (QOLIC), a measure of health-related quality of life (HRQoL) developed specifically for children in public care. Based on the Pediatric Quality of Life Inventory? (PedsQL?) model, this questionnaire has previously demonstrated good validity and internal reliability. Two forms of the questionnaire are available, a self-completed report for children and a parallel proxy report for completion by carers. Thirty-five children aged between 8 and 17 years, and their carers, completed the PedsQL generic module and QOLIC on two separate occasions. At the second completion, carers and children were asked to rate whether the child's physical and emotional health had changed (improved, got worse or stayed the same) since the first questionnaire was completed to enable test–retest reliability and responsiveness to a change in health to be calculated. Both measures demonstrated good feasibility with missing responses of less than 1%. No floor effects and minimal to moderate ceiling effects were found. Test–retest reliability could not be established due to the small numbers reporting no change in their health status. However, it can be argued that responsiveness is more important, when looking at a changeable population such as this one. Good responsiveness was established for self-reported PedsQL and QOLIC measures, and for the proxy version of QOLIC. Therefore, this study provides further evidence that QOLIC provides a valid and reliable measure of HRQoL. QOLIC is easy to use and therefore has the potential to have a major impact on clinical practice with children in public care. It is recommended that future studies focus on assessing the ability of the measure to differentiate between groups of “looked-after” children.