Validation of the mini pediatric asthma quality of life questionnaire and identification of risk factors affecting quality of life among Lebanese children

Background: Few studies used various scales to assess the QOL in Lebanon in general but none was specific to asthma. Our objective was to assess the asthma-related quality of life, using the mini Pediatric Asthma Quality of Life Questionnaire (PAQLQ), in Lebanese asthmatic children, check its validity compared to the original version, and identify clinical and sociodemographic risk factors that might affect these children's QOL. Methods: This retrospective study included 300 children aged between 7–16 years (51.6% boys and 48.4% girls). To confirm the mini-PAQLQ questionnaire construct validity in the Lebanese population, an exploratory factor analysis was launched for the 13 items of the questionnaire, using the principal component analysis technique. Cronbach's alpha was recorded for reliability analysis. A multivariate analysis linear regression was carried out, taking the QOL score as the dependent variable. Results: The correlation coefficients for factors 1 (symptoms and emotions) and 2 (activities) were similar to that of the original scale. High Cronbach's alphas were found for factor 1 (0.914), factor 2 (0.888), and the full scale (0.921). Uncontrolled asthma, the child's respiratory problems before the age of 2 years, and the presence of pets at home significantly decreased the children's asthma-related quality of life (Beta = ?1.541; Beta = ?6.846, and Beta = ?5.364, respectively). Conclusion: We were able to validate the mini-PAQLQ among the Lebanese population. The identification of risk factors, some of which are amenable to intervention, especially uncontrolled asthma, could lead to an improvement in the asthmatic children's QOL.     

Looking into the factors affecting renal patients' quality of life

Quality of life, according to Horquist is "the extent to which one's needs are satisfied, in the context of physical, psychological, social and environmental conditions" (I). Self-esteem is the basic element of a good quality of life. Health-related quality of life consists of a number of components; including family relationships, friendships, finances, physical and psychological status, adjustment to therapy and feeling of security during the treatment.     

Influenza vaccination in asthmatic children: effects on quality of life and symptoms.

This study aimed to detect the effect of influenza vaccination on quality of life, symptomatology and spirometry in asthmatic children. A randomised double-blind placebo-controlled trial in 696 (296 in 1999-2000 and 400 in 2000-2001) asthmatic children aged 6-18 yrs, which were vaccinated with either vaccine or placebo, was performed. Children participated for only one influenza season. They recorded symptoms in a diary and reported when symptom scores reached a predefined severity level. If this occurred research nurses visited them twice, first to take a pharyngeal swab and spirometry, and a week later to assess quality of life over the past illness week. Compared with placebo, vaccination improved health-related quality of life in the weeks of illness related to influenza-positive swabs. However, no effect was found for respiratory symptoms recorded in the diaries during those weeks. Similarly, no differences were found for quality of life in all weeks of illness or for respiratory symptoms throughout the seasons. Influenza vaccination was found to have a moderately beneficial effect on quality of life in influenza-positive weeks of illness in children with asthma.     

Dialysis-related factors affecting quality of life in patients on hemodialysis

INTRODUCTION. Treatment modalities for end-stage renal disease affect quality of life (QOL) of the patients. This study was conducted to assess the QOL of patients on hemodialysis and compare it with caregivers of these patients. Cause of ESRD and dialysis-related factors affecting QOL were also examined. MATERIALS AND METHODS. This cross-sectional study was conducted on patient on maintenance hemodialysis for more than 3 months at 3 dialysis centers of Lahore. Fifty healthy individuals were included as controls from among the patients' caregivers. The QOL index was measured using the World Health Organization QOL questionnaire, with higher scores corresponding to better QOL of patients. RESULTS. Eighty-nine patients (71.2%) were men, 99 (79.2%) were married, 75 (60.0%) were older than 45 years, and 77 (61.6%) were on dialysis for more than 8 months. Patients on hemodialysis had a poorer QOL as compared to their caregivers in all domains except for domain 4 (environment). There was no difference in the QOL between the three dialysis centers of the study, except for domain 3 (social relationship) of the patients at Mayo Hospital (a public hospital), which was significantly better. Nondiabetic patients had a better QOL in domain 1 (physical health) as compared to diabetic patients. Duration of dialysis had a reverse correlation with the overall QOL. CONCLUSIONS. We found that QOL of hemodialysis patients was poor as compared to caregivers of the patients, especially that of diabetics. Also, duration of dialysis had a reverse correlation with QOL.     

The impact of home cleaning on quality of life for homes with asthmatic children.

Treatment with common household bleach containing hypochlorite destroys dust mites and denatures protein allergens. The purpose of this study was to determine if home use of hypochlorite products results in lowered exposure to bacteria, fungi, and protein allergens and improved quality of life (QOL) for asthmatic persons in the home. Asthmatic and nonasthmatic households containing at least three persons (between 2 and 17 years of age) were recruited. Households were supplied one of three sets of cleaning products (regular products, some containing hypochlorite; regular products plus three additional products with dilute hypochlorite; control, no products). Participants were supplied with cleaning instructions and asthma education. The control group was instructed to clean as usual. Participants completed general health and QOL questionnaires. Asthmatic participants completed an additional asthma QOL questionnaire. Families participated in the study for 8 weeks and completed the full set of questions every 2 weeks. Homes were visited at the beginning of the study and twice thereafter at monthly intervals. Samples evaluated were surface bacteria, viable and nonviable airborne spores, and dust antigen content. Reductions in surface bacteria, airborne fungal spores, and dust antigen levels were achieved. Significant improvement in general health parameters was seen for the asthmatic product groups over the control group. Significant improvement in general QOL and asthma-specific QOL was seen in the asthmatic group. Emphasis on cleaning and cleaning education combined with hypochlorite-based cleaning supplies resulted in significantly improved QOL for families with asthmatic children.     

Factors affecting health-related quality of life in Thai children with thalassemia

Background

Knowledge of the factors associated with health-related quality of life (HRQOL) among patients with thalassemia is essential in developing more suitable clinical, counseling, and social support programs to improve treatment outcomes of these patients. In light of the limited research in this area, this study aims to examine factors associated with HRQOL among children and adolescents with thalassemia in Thailand.

Methods

A cross-sectional survey was conducted in three selected hospitals in Thailand during June to November 2006. PedsQL? 4.0 Generic Core Scale (Thai version) was used to assess HRQOL in 315 thalassemia patients between 5 and 18 years of age. Other related clinical characteristics of the patients were collected via medical record review.

Results

The mean (SD) of the total summary score was 76.67 (11.40), while the means (SD) for the Physical Health Summary score and Psychosocial Health Summary score were 78.24 (14.77) and 75.54 (12.76), respectively. The school functioning subscale scored the lowest, with a mean of 67.89 (SD = 15.92). The following factors significantly affected the HRQOL of the patients: age; age at onset of anemia and age at first transfusion; pre-transfusion hemoglobin (Hb) level; receiving a blood transfusion during the previous three months; and disease severity. In addition, iron chelation therapy had a significant negative effect on HRQOL in the school functioning subscale. In contrast, serum ferritin level, frequency of blood transfusions per year, and gender were not significantly related to HRQOL among these patients. The results from multivariate analysis also confirmed these findings.

Conclusions

To improve HRQOL of thalassemia patients, suitable programs aimed at providing psychosocial support and a link between the patient, school officials, the family and the physician are important, especially in terms of improving the school functioning score. The findings also confirmed the importance of maintaining a pre-transfusion Hb level of at least 9-10.5 g/dL. In addition, special care and attention should be given to patients with a severe condition, and those who are receiving subcutaneous iron chelation therapy.

     

Assessment of quality of life in Iranian asthmatic children, young adults and their caregivers

Interest in the impact of illness on day to day function is leading investigators to include both disease specific and generic health related quality of life (HR QOL) questionnaires in a broad range of clinical studies and to gain a full picture of the impact of asthma on the lives of children with this condition, it is necessary to make direct measurement of health related quality of life. In response to this need, we used the Juniper's pediatric asthma quality of life questionnaire (PAQLQ) and Juniper's Pediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ) that has been developed based on guidelines for construction of over a dozen validated disease specific quality of life instruments. The PAQLQ consists of 23 items that in children with asthma have been identified as troublesome in their daily lives and PACQLQ that contains 13 items in two domains of emotional and activities disturbances. The study design consisted of an 18 month single cohort study. Patients participating in the study were 113 children, 7-17 years of age, with a wide range of asthma severity and their caregivers. For each patient a PAQLQ and for each caregiver a PACQLQ was completed. One week before visit patients recorded morning peak flow rates, medication use and symptoms in a diary. After complete physical examination, for determining of asthma severity, spirometry was performed. The questionnaires after statically analysis showed good levels of both longitudinal and cross sectional correlations with the conventional asthma indices and with general quality of life. We found that consistently QOL in boys were more disturbed than females, a good relevancy between severity of asthma and QOL scores and more disturbances of QOL in caregivers of male asthmatic patients than caregivers of female asthmatic patients. We could not find any significant relevancy between FEV1 percentage of predicted and overall scores of QOL. Smaller airways, and higher airway resistance and more activity of males than females may explain why boys have more disturbed life style than females.     

Evaluation of quality of life among the caregivers of asthmatic children: The new IFABI-R questionnaire

BackgroundThe health-related quality of life (HRQoL) of asthmatic children and their caregivers is correlated to management of the disease and the presence of certain morbidity indicators. The integral assessment of paediatric asthma must include the evaluation of HRQoL among the caregivers, although existing questionnaires only partially assess the dimensions of this aspect. The present study describes a new questionnaire for evaluating HRQoL among the caregivers, comprising three dimensions (functional, emotional, and socio-occupational).Material and methodsThe study involves two phases. A total of 81 patients between 3 and 9 years of age and their caregivers participated in the first phase, involving a qualitative and psychometric study of the preliminary version of the questionnaire (IFABI). A total of 137 patients between 2 and 17 years of age and their caregivers participated in the second phase, in which the revised version of the questionnaire (IFABI-R) was developed and subjected to psychometric evaluation.ResultsFirst phase: The IFABI showed important reliability and internal consistency (Cronbach alpha=0.93), concurrent validity requiring improvement, and a scantly clear internal structure. Second phase: The IFABI-R showed important reliability and internal consistency (Cronbach alpha=0.90), adequate concurrent validity, and a three-dimensional structure whose three factors correspond to the three dimensions of the questionnaire.ConclusionsThe good psychometric results obtained with the IFABI-R justify its use in paediatric asthmatic patients. The questionnaire is currently being scaled, and its sensitivity to change is being assessed.     

A prospective study of factors affecting quality of life in systemic lupus erythematosus

OBJECTIVE: To prospectively identify factors influencing quality of life (QOL) over 6 months in patients with systemic lupus erythematosus (SLE). METHODS: Ninety ethnically diverse patients with SLE completed questionnaires administered 6 months apart assessing QOL (using the Medical Outcomes Study Short Form-36) and demographic, socioeconomic, psychosocial, and behavioral factors. Disease activity, damage, and treatment were recorded at both evaluations. Multiple linear regression (adjusting for baseline health status) was used to identify factors influencing mental and physical health. RESULTS: Improved physical health after 6 months was associated with reductions in learned helplessness (p = 0.034), improved mental health (p<0.001), longer disease duration (p = 0.009), and better physical health at baseline (p = 0.027). Improved mental health after 6 months was associated with better family support (p = 0.002), improvements in physical health (p<0.001), disease activity, and prednisolone dose (interaction term p = 0.019), less disease related damage (p<0.001), non-use of cytotoxic drugs (p = 0.02), and older age at diagnosis (p = 0.007). CONCLUSION: Potentially modifiable psychosocial, disease, and therapy related factors influence QOL in patients with SLE.     

The factors affecting Beck depression scale in asthmatic patients

Symptoms of asthma can be intensified and/or mixed with depression since depression can cause asthmatic symptoms like complaints even in normal people. In the present study, depression index and its influencing parameters were examined in asthmatic patients. A questionnaire including sociodemografic features was applied to 120 patients, accepted as asthmatic according to the Thoracic Society Guidelines, who were following up in our asthma and allergy outpatient clinic. There were 98 female and 22 male patients and the mean age was 38.19 +/- 10.99. Physical examination, PEF and spirometric measures were made in all patients. Also daytime and nighttime symptom score, Q score, Beck depression score were applied to patients. Beck Depression Index (BDI) was in range of 0 and 37 and the mean was 11.26 +/- 8.54 (mild). According to the cut-off values, BDI scores were obtained as absent, mild, moderate and severe, 59%, 27%, 9%, 7% respectively. The mean BDI score was higher in female patients (12.32 +/- 8.77) than in male patients (6.55 +/- 5.41) and in married patients (11.91 +/- 8.77) than in unmarried ones (7.56 +/- 6.00). According to the results of FEV(1) values, PEF changes, there were no significant difference obtained between groups (p> 0.05). The mean value of BDI was found to be significantly high in patients with moderate and high daytime and nighttime score and Q score (p< 0.05). In conclusion, we think that, while evaluating the severity of asthma, if the spirometric results are not correlated with the symptoms then psychological conditions of the patients should be taken into consideration.     

影响肠造口患者生活质量的心理因素研究进展

本文通过综述国内现有研究中造口患者生活质量及心理测评工具、心理因素对造口患者生活质量的影响及提高肠造口患者生活质量的心理护理措施,进一步明确了心理护理及健康教育对提高造口患者生活质量的重要意义,提出临床上需根据造口患者的不同心理特点,采取适当的干预方式,进行分阶段综合健康教育和个性化的心理护理,降低患者负性心理因素的水平,提高患者正性心理因素的水平,从而达到提高患者生活质量的目标。     

影响成人阻塞性睡眠呼吸暂停低通气综合征患者生活质量因素分析

目的 对影响成人OSAHS患者生活质量的因素进行分析.方法 收集OSAHS患者共59例,均进行多导睡眠监测并填写ESS嗜睡量表及《成人用阻塞性睡眠呼吸暂停低通气综合征患者生命质量评估表》(QOL-OSAHS).记录睡眠呼吸暂停低通气指数(AHI)、呼吸暂停总时间(AP 总时间)、最长呼吸暂停时间、呼吸暂停平均时间、呼吸暂停及低通气时间指数(AHTI)、最低血氧饱和度、90％以下血氧饱和度指数、90％以下血氧饱和度次数、血氧饱和度下降的时间、血氧饱和度低于90％的时间占睡眠时间的比例(TST90),采用多元线性回归分析及判别分析进行检验.结果 ①呼吸指标中筛选出AP总时间与生活质量关系密切,与生活质量量表综合评分、EP评分、症状维度、日常工作生活维度及社会关系维度相对应的标准回归系数分别是:-0.326、0.544、-0.531、-0.282、-0.303,P值均＜0.05,差异有统计学意义.②血氧饱和度指标:SaO2下降的总时间和生命质量量表综合评分、EP评分、症状维度、日常工作生活维度相对应的标准回归系数分别是:-0.599、0.696、-0.754、-0.469,P值均＜0.05,差异有统计学意义;TST90会影响到生命质量量表中社会关系维度,标准相关系数是-0.263 (P＜0.05).最低SaO2和生活质量量表中的综合评分、EP评分、症状维度、日常生活工作维度及警觉维度的标准回归系数分别是:-0.378、0.310、-0.318、-0.326、-0.263,P值均＜0.05,差异有统计学意义.③应用判别分析得到的方程:轻度OSAHS=-59.676+ 1.537(最低SaO2)-0.01(SaO2下降的总时间)+91.848 (TST90);中度OSAHS=-63.391+ 1.58(最低SaO2)-0.01(SaO2下降的总时间)+104.711 (TST90);重度OSAHS=-68.300-0.000044(AP总时间)+1.618(最低SaO2)-0.01(SaO2下降总时间)+79.883 (TST90).上述方程对轻、中、重的判别正确率分别是:73.3％、38.5％、76.5％.结论 AP总时间、SaO2下降的总时间、TST90和最低SaO2从不同的方面影响患者的生活质量,在评价OSAHS患者病情程度时应将这四个指标纳入考虑范围.     

Psychosocial factors and quality of life in children and adolescents with implantable cardioverter-defibrillators

Few data exist on the quality of life in children and adolescents with implantable cardioverter-defibrillators (ICDs). The objective of this study was to determine whether anxiety, depression, family functioning, and quality of life are related to cardiac illness severity in pediatric patients with ICDs. The subjects were 20 patients (mean age 14.8 years; median 15.1, range 9 to 19) who had an ICD implantation a mean 1.4 years (median 0.1, range 0 to 6) before the study. The patients completed the Revised Children's Manifest Anxiety Scale, Reynold's Adolescent/Child Depression Scales, Child Health Questionnaire-87, and the Worries About ICDs Scale. The parents completed the Impact-on-Family Scale and the Child Health Questionnaire (CHQ-50). The Defibrillator Severity Index assessed cardiac severity. The rates of anxiety or depression were not increased, although the patients appeared to experience a greater need for social acceptance. Parent ratings of overall family functioning did not differ significantly from normative sample means. Parents reported significantly lower CHQ-50 summary physical functioning scores than scores of a normative United States sample, whereas there was no significant difference for the CHQ-50 summary psychosocial score. Caregivers perceived that their children had a lower quality of life when asked about their child's physical functioning, functioning in the social-physical role, and general health perceptions. Despite the overall nonsignificance of the psychosocial summary score, the social emotional/behavioral role, and the emotional impact their child's health had on themselves, subscales were all significantly lower than the normative sample. Cardiac illness severity was not significantly associated with anxiety, depression, quality of life, or family functioning. However, significant associations were found among measures of anxiety, depression, family functioning, and quality of life. Overall, most pediatric patients with ICDs appear to be a resilient group of youngsters. Their quality of life was more strongly correlated with their feelings of anxiety and depression as well as their family functioning than to the severity of their cardiac illness.     

Critical factors affecting quality of life of adult patients with anorectal malformations or Hirschsprung's disease

OBJECTIVES: The first objective was to compare the quality of life of adult patients with anorectal malformations (ARM) or Hirschsprung's disease (HD) and to compare both groups with healthy people. And the second objective was to examine the factors that affect the quality of life of patients with ARM or HD, using a theoretical model in which patients' background characteristics explain quality of life via mediating disease-specific functioning and psychosocial functioning. METHODS: Three hundred and forty-one patients completed a questionnaire, which assessed sociodemographic characteristics, disease-specific and psychosocial functioning, and quality of life. Clinical factors were extracted from the medical records. RESULTS: Patients with ARM or Hirschsprung's disease did not differ in their quality of life. Compared to healthy people, both patient groups reported more limitations in their "overall" physical quality of life, but only patients with ARM reported impaired quality of life on several specific domains (e.g., physical role-functioning, pain). The model was largely accepted. Most striking were the strong effects of the psychosocial functioning factors in contrast to weak effects of the disease-specific "constipation" and "fecal continence" factors. CONCLUSIONS: The quality of life of patients with ARM or Hirschsprung's disease was found to be comparable. Compared to healthy people, both patient groups encountered "overall" physical health problems, but only patients with ARM reported additional pain and limitations in role functioning due to physical problems. It appeared that psychosocial functioning had the most important effect on the quality of life of patients with ARM or Hirschsprung's disease, while fecal incontinence and constipation had almost no effect on their quality of life.     

老年类风湿关节炎患者生活质量及相关因素的调查研究

目的 研究老年类风湿关节炎(RA)患者的生活质量现状并分析其影响因素,以探讨提高其生活质量的有效途径.方法 描述性研究设计,方便取样,采用自设问卷、自我管理问卷、家庭功能问卷、平均疾病活动度评分(DAS28)、36题健康状况调查量表(SF-36)调查75例老年RA的基本资料、老年RA相关知识和态度、自我管理、家庭功能及生活质量状况.采用单因素相关分析法分析老年RA患者生活质量与影响因素的关系.结果 本组老年RA患者SF-36得分(66±12).SF-36得分与关节功能呈正相关(r=0.705,P＜0.01),与DAS28呈负相关(r=-0.712,P＜0.01);SF-36得分与患者对老年RA加重时症状知识的了解程度、与患者对疾病的态度、与从家人那里得到满意帮助、与能否及时就诊、与自我管理总分呈正相关(r=0.515,0.485,0.540,0.575,0.545,P＜0.01);与患者对老年RA知识的了解程度、与家庭功能类型、与家人理解患者的感情和情绪呈正相关(r=0.325,0.412,0.363,P＜0.01);与病程呈负相关(r=-0.312,P＜0.01).此外,分析还发现,本组患者随着经济状况的降低生活质量有下降的趋势,随着文化程度的增高生活质量有提高的趋势.结论 老年RA生活质量现状并不乐观,与DAS28指数、病程、对疾病知识的了解程度、对疾病态度、自我管理、家庭支持及其他因素存在相关性.