Perceived Quality of Life and Health of Hospitalized Children

Objective  The purpose of the current study was to examine the impact of disease and hospitalization on children’s quality of life. Method  Three measures were administered to 105 participants ranging in age from 6 to 15 years, from public hospitals in Castilla y Leon (Spain). Data were collected throughout 9 months. Measures were the Survey on Subjective Perception of Hospitalization and Hospital (CPSH), the quality of life survey KINDL, and the health survey SF-36. Internal consistency coefficients were acceptable for most of scales and subscales. Results indicated that children experience a decrease in their quality of life, mainly in daily living activities and psychological well being; that emotional states impact their quality of life, and that hospitals need to make some changes to better meet the needs of hospitalized children. Conclusions  Interventions, at an organizational and individual level, may help improve the well-being of hospitalized children.     

The Paediatric Asthma Caregiver's Quality of Life Questionnaire in Swedish parents

With the Paediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ), parents grade impaired activities (5 items) and emotional concern (8 items) from 1 to 7 regarding how much their own quality of life (QoL) has been affected by the disease of their child during the last week. The questionnaire was translated into Swedish. To test the feasibility and validity of the Swedish version, 71 asthmatic children and their families were approached. Sixty-one families (86%) participated. The mean age of the children was 8.7 y. Parental grading of symptoms (Spearman's rho = 0.637, p < 0.001), the asthma-specific QoL of the child (rho = 0.359, p = 0.002) and gradings of asthma from medical records (mild asthma median score 6.69, moderate 6.27 and severe 5.12, p = 0.001) were all related to overall PACQLQ scores. The sex of the child, the presence of other diseases related to allergy, peak flow rate (PEFR) and socio-economic level did not affect the scores. Lower scores in the emotional domain were seen in parents of children on steroids (p = 0.049). The distribution of scores was heavily skewed towards the positive end of the scale, leading to limited power to discriminate among parents of children with mild asthma. The instrument had good internal consistency and was well accepted by the parents.     

A Comparison of the Quality of Life of Arab Mothers of Children with and without Chronic Disabilities

Aim. To compare the quality of life (QoL) of Arab mothers in Kuwait who had children with chronic disabilities and those whose children had no disabilities and provide recommendations for how occupational therapists can assist in enhancing the mothers’ QOL. Methods. The case group included 71 mothers of children with chronic disabilities and a control group of 86 mothers of children without disabilities. Mothers’ QoL was assessed using the Arabic WHOQOL-BREF questionnaire and the support systems of mothers of children with disabilities using a support questionnaire. Results. The QoL of mothers of children with disabilities was significantly lower than that of mothers of healthy children (p < .001) in all four domains of WHOQOL-BREF (physical health, psychological wellbeing, social relationships, and environment). Mothers of children with disabilities reported that they received most support from their nuclear family. There was a lack of formal support systems in place in Kuwait. Conclusion. Mothers of children with disabilities perceive their QoL as poor and they have limited support systems. Occupational therapists are encouraged to serve as a resource for families, sharing information including available services and community resources, and supporting mothers as competent caregivers.     

临床下电活动癫痫患儿的健康生活质量

目的探讨临床下电活动癫患儿的健康相关生活质量(HRQOL)。方法门诊随访的癫患儿临床下电活动30例、有临床发作50例、无临床发作也无电活动28例和非癫对照儿童30例为研究对象,采用癫患儿生活质量父母问卷(QOLCE),由上述观察对象的父母或其他监护人完成问卷填写,按量表评分标准进行评分,得分高者生活质量好。结果临床下电活动组的多个分量表得分较对照组低;总的健康和自评生活质量量表得分高于有临床发作组。结论临床下电活动患儿生活质量虽好于有临床发作的癫患儿,但它仍明显影响患儿认知功能、行为,限制患儿日常生活,影响患儿的社会功能,使患儿的生活质量低于正常儿童。     

Quality of Life in Survivors of Childhood Cancer After Mecatherapy with Autologous Bone Marrow Rescue

A questionnaire study was carried out in a group of survivors of childhood cancer to assess their quality of life. The questionnaire was sent to 30 survivors who had completed treatment with megatherapy followed by autologous bone marrow rescue at St Bartholomew's Hospital, London. Of the 28 respondents (93%), in 27 (96%) the quality of life was judged to be good, with 11 of these 27 (40%) having no disability whatsoever and a further 9 (33%) reporting only minimal disability. The other 7 patients had moderate to severe disabilities, with pain and depression remaining ongoing problems, and some adolescents felt that they were unable to cope with everyday life alongside their peers. Nine parents and 14 of the children themselves expressed anxiety about the previous illness. The study shows that, by using a postal method, a satisfactory assessment of quality of life in survivors of childhood cancer can be made.     

Health-related Quality of Life in Children and Adolescents With Sickle Cell Disease

Objective

To assess health-related quality of life (HRQOL) in children and adolescents with sickle cell disease (SCD).

Design, Setting, and Participants

The PedsQL 4.0 Generic Scales, a multidimensional self-report instrument that has been shown to be valid and reliable for use in children and adolescents with chronic illness, consists of 23 items that assess physical, emotional, social, and school functioning. Questionnaires were administered to 124 children and adolescents (ages 8 to 18 years, child self-report) with SCD (100 sickle cell anemia, 24 sickle β zero thalassemia) and their parents (parent-proxy report). Summary scores for children's and parents' ratings of overall HRQOL and psychosocial health and subscale scores for physical, emotional, social, and school functioning were compared with published data for healthy children. Both summary and subscale scores for children with SCD also were compared with those of their parents.

Results

Children with SCD and their parents rated overall HRQOL and all subdomains of HRQOL lower than did healthy children and their parents (P < .001). Children with SCD rated their own HRQOL significantly better than their parents did for overall HRQOL and all subdomains (P < .001) except emotional functioning (P = .06).

Conclusions

Children with SCD and their parents perceived overall HRQOL and all HRQOL subdomains to be lower than scores reported in healthy children. Therefore, successful therapeutic efforts to improve HRQOL could represent important advances in the health of children with SCD.     

Psychological Functioning and Disease-Related Quality of Life in Pediatric Patients With an Implantable Cardioverter Defibrillator

The objective of this multicenter study was to evaluate psychological functioning and disease-related quality of life (DRQoL) in pediatric patients with an implantable cardioverter defibrillator (ICD) in The Netherlands. Thirty patients were investigated; the mean age was 16.3 years, and the mean duration of implantation was 3.6 years. To assess psychological problems, three domains of the Symptom Checklist (SCL-90-R) were administered to the 25 patients >13 years old. DRQoL was assessed with a disease-specific pediatric questionnaire, the short-form 11-item Worries About (WA)ICDs Scale. Patients ≥13 years old scored significantly higher than the reference group on the domains of anxiety, depression, and sleeping problems of the SCL-90-R (T = 7.5, p < 0.001; T = 5.4, p < 0.001; and T = 7.8, p < 0.001, respectively). Patients who had received an (in)appropriate shock reported more depressive symptoms (T = 2.1, p < 0.03). Patients with >2 years implant duration (N = 19) or who had received an (in)appropriate shock (N = 13) showed lower DRQoL scores on the modified WAICD (T = 2.1, p < 0.04; T = 2.1, p < 0.5, respectively). Age at implantation or underlying disease did not influence psychological problems or DRQoL. Young ICD patients showed more anxiety, depression, and sleeping disorders. Worries were increased among patients with ICD shocks and in those who had their ICD implanted for >2 years. To determine psychological problems and help children to learn to cope with shocks, proper guidance and monitoring of young ICD patients are recommended.     

漏斗胸患儿心身健康调查

目的　调查漏斗胸患儿心身健康状况 ,进一步了解漏斗胸矫治手术的意义。方法　采用儿童行为量表 (CBCL)、症状自评量表 (SCL -90 )和自编的漏斗胸患儿心身健康调查问卷 ,对观察组 87名漏斗胸患儿和对照组 87名正常儿童进行调查分析。结果　观察组较对照组行为问题检出率高 ,尤其表现为人际关系敏感、抑郁、焦虑、强迫因子等方面。结论　漏斗胸患儿的心身健康水平低下 ,早期手术矫治有利于患儿在生理 心理 社会方面全面发展。     

中文版儿童生命质量哮喘特异性量表的信度和效度评价

目的：评价简体中文版儿童生命质量（PedsQLTM）哮喘特异性量表家长报告的信度和效度。方法：采用 PedsQLTM 哮喘特异性量表家长报告量表及自设一般情况问卷,对重庆医科大学附属儿童医院哮喘中心就诊的 233 例哮喘患儿及其家长进行问卷调查。用克朗巴赫α系数考核其信度,分别用探索性因子分析、相关分析考核其效度。结果：中文版 PedsQLTM 哮喘特异性量表家长报告全量表、症状相关问题、治疗相关问题、担心相关问题、沟通相关问题的α系数分别为0.86、0.80、0.78、0.89和0.93,表明量表有较好的内部一致性。通过因子分析共提取7个公因子,与量表基本结构一致,主成分累积贡献率接近 66%。4个维度得分与所含条目得分间均有较强的相关关系(r=0.41~0.92, P＜0.01)。结论：中文版PedsQLTM 哮喘特异性量表家长报告有良好的信度和效度,与原语言版本一致,可适用于中国哮喘患儿健康相关生命质量评价。［中国当代儿科杂志,2010,12(12)：943-946］     

Quality of life of former premature infants during adolescence and beyond

Interest in determining the quality of life of children and adults is now considered a priority. This is a result of a shift in thinking with greater transparency in finding out not only the health outcomes, but also the personal burden of illness and life satisfaction for the individual. However, there is still no consensus on the definition of quality of life or the appropriate tools to measure the same.