Pediatric Asthma Caregiver's Quality Of Life Questionnaire Research Articles

Assessment of Quality of Life in Asthmatic Children and their Caregivers after Treatment with Omalizumab

Background: Omalizumab, a monoclonal anti-immunoglobulin E antibody, has been successfully used as a supplementary therapy to improve asthma control in children aged ≥ 6 years with severe persistent allergic asthma. The aim of the study was to demonstrate the quality of life in children with severe asthma and their caregivers, changes from baseline in FEV1 and daily inhaled corticosteroids (ICS) dose after treatment with omalizumab. Methods: Participants were seen in the clinic at enrollment (visit 1), after 16 weeks (visit 2) and after 52 weeks (visit 3) of treatment with omalizumab. We evaluated lung function, ICS use and the quality of life with The Pediatric Asthma Quality of Life Questionnaire (PAQLQ) and The Pediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ). Results: 19 children and caregivers were enrolled. Significant improvement in PAQLQ and PACQLQ scores were achieved by 47.4% of children and 52.6% of caregivers after 16-week and by 63.6% of children and all caregivers after 52-week of treatment. Significant positive correlation between PAQLQ and PACQLQ at first and at second visit was found, 63.3% of patients achieved reduction in ICS doses. We did not notice significant improvement in FEV1. Conclusions: The improvement in quality of life in asthmatic children and adolescents observed after Omalizumab correlates with reduction in ICS use but not with FEV1. Parents' information was different from children observation, therefore both questionnaires for children and their caregivers should be used to evaluate quality of life in children.

Impact of a short early therapeutic education program on the quality of life of asthmatic children and their families

Few studies have been made on the impact of therapeutic education (TE) on the quality of life (QOL) of asthmatic primary-school aged children. We attempted to assess the beneficial effects on the QOL of children and their parents of a short TE program initiated immediately after the first consultation with a pediatric pulmonologist. The QOL of 31 families of asthmatic children (aged 5-11) was measured before and 3 months after a short and early programme of TE by the French version of the Pictured Child's Quality of Life Self Questionnaire (AUQUEI, AUtoquestionnaire QUalité de vie Enfant Imagé) for the children, and by the Paediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ) for the parents. The other criteria studied were asthma management, school and workplace absenteeism and functional respiratory parameters. TE did not significantly alter the AUQUEI score (P = 0.67). No change was observed in the different areas studied: autonomy (P = 0.97), leisure activities (P = 0.64), functions (P = 0.88), and social relations (P = 0.51). In contrast, the PACQLQ score considerably improved after TE (P < 0.001), as evidenced by reduced activity limitations (P < 0.001) and improved emotional functioning of parents (P < 0.001). These results were accompanied by a significant improvement in asthma management, with, in particular, a major decrease in the use of medication (P < 0.001) and the number of unscheduled medical consultations (P < 0.001) and visits to the emergency department (P = 0.02); a decrease in school absenteeism (P = 0.009); and an improvement in forced expiratory volume in 1 sec (FEV1 ) (P = 0.05). Our TE program had rapid and beneficial effects on numerous objective and subjective parameters, thereby contributing to the well-being of the families and probably to a subsequent decrease in the overall cost of asthma management. Pediatr Pulmonol. 2015; 50:213-221. © 2014 Wiley Periodicals, Inc.

A prospective study to assess the quality of life in children with asthma using the pediatric asthma quality of life questionnaire

Objectives: The objective of the following study is to assess the quality-of-life (QOL) in children with asthma using the mini pediatric asthma quality-of-life questionnaire (mini PAQLQ) with treatment and from the caregiver's point of view using the pediatric asthma caregivers quality-of-life questionnaire (PACQLQ). Materials and Methods: Of the 75 children with asthma in the age group from 7 to 17 years of age, 69 were included in the study. The QOL was assessed using the mini PAQLQ and PACQLQ. An asthma clinical severity score was also used to assess the clinical condition simultaneously. Results: On treatment, there was a significant change in the activity and symptom category of the mini PAQLQ (P < 0.001), but there was no significant change in the emotional domain of the mini PAQLQ even after medical intervention (P = 0.563). This indicates that although the activity level of children improved with significant symptomatic improvement, these children did not recover emotionally from the impact of the disease with medical intervention. There was a significant change noted in both the activity and emotional domain of the PACQLQ with treatment. Conclusions: Although the children improved clinically with treatment there was no significant change in the emotional domain of mini PAQLQ. Inspite of there being a positive change in the groups after intervention, no statistically significant change was noted in the PAQLQ scores. Management of a child with asthma should not only include medical intervention but also psychological support and counseling.

Management of Asthma in School age Children On Therapy (MASCOT): a randomised, double-blind, placebo-controlled, parallel study of efficacy and safety

Asthma affects one in eight children in the UK. National management guidelines have been available for many years but, unlike in adults, studies in children have been few, with their methodologies often based on inappropriate adult models. Sound medical evidence in support of the national guidelines for asthma management in children is lacking. The MASCOT study has been developed to address this need. To determine whether adding salmeterol or montelukast to low-dose inhaled corticosteroids (ICSs) can reduce the number of exacerbations requiring treatment with oral corticosteroids in children with uncontrolled asthma. A randomised, double-blind, placebo-controlled trial with a 4-week run-in period on a fluticasone propionate inhaler (100 µg twice daily) with inhaler technique correction. Patients who met the post run-in period eligibility criteria were randomised in the ratio of 1 : 1 : 1 and were followed for 48 weeks. Secondary care hospitals based in England and Scotland with recruitment from primary and secondary care. Children aged 6-14 years with asthma requiring frequent short-acting beta-2 agonist relief, with symptoms of asthma resulting in nocturnal wakening and/or asthma that has interfered with usual activities. Three groups were compared: (1) inhaled fluticasone propionate 100 µg twice daily plus placebo tablet once daily; (2) inhaled fluticasone propionate 100 µg and salmeterol 50 µg twice daily (combination inhaler) plus placebo tablet once daily; and (3) inhaled fluticasone propionate 100 µg twice daily plus montelukast 5-mg tablet once daily. The primary outcome was the number of exacerbations requiring treatment with oral corticosteroids over 48 weeks. Secondary outcome measures included quality of life as measured by the Paediatric Asthma Quality of Life Questionnaire with Standardised Activities [PAQLQ(S)] and the Paediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ); time from randomisation to first exacerbation requiring treatment with a short course of oral corticosteroids; school attendance; hospital admissions; amount of rescue beta-2 agonist therapy prescribed; time from randomisation to treatment withdrawal (because of lack of efficacy or side effects); lung function at 48 weeks (as assessed by spirometry); cost-effectiveness; adverse events. The study was closed prematurely because of poor recruitment and the target sample size of 450 was not achieved. In total, 898 children were screened to enter the trial, 166 were registered for the 4-week run-in period and 63 were randomised (group 1: 19, group 2: 23, group 3: 21), with 38 contributing data for the primary outcome analysis. There were no significant differences between groups for any of the outcomes. Adverse events were similar between the groups except for nervous system disorders, which were more frequently reported on fluticasone plus montelukast. Based on the results of the MASCOT study it is not possible to conclude whether adding salmeterol or montelukast to ICSs can reduce the number of exacerbations requiring treatment with oral corticosteroids in children with uncontrolled asthma. Current Controlled Trials ISRCTN03556343. This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 17, No. 4. See the HTA programme website for further project information.

Appropriate statistical testing of quality of life scores from children with asthma and their caregivers

Appropriate statistical testing of quality of life scores from children with asthma and their caregivers John A Myers1, Robert William Prasaad Steiner1, James Legleiter2, Yu-Ting Chen1, Robert J Esterhay11University of Louisville School of Public Health and Information Sciences, 2Asthma Disease Management, Passport Health Plan, Louisville, KY, USAObjective: Scores on the Mini-Pediatric Asthma Quality of Life Questionnaire (mPAQLQ) and Pediatric Asthma Caregiver’s Quality of Life Questionnaire (PACQLQ) assess disease-specific quality of life (QoL). Paired t-tests are a commonly used analytic method to examine differences between these QoL scores. This report examines whether nonparametric approaches may be more appropriate.Study design and setting: Responses on the mPAQLQ and PACQLQ were collected in a cross-sectional design with 68 child–caregiver dyads attending a community asthma prevention program – Healthy Hoops® Kentucky. Scores and differences in scores were compared using both parametric and nonparametric approaches.Results: Scores on mPAQLQ subscales and overall QoL were not normally distributed, indicating that parametric tests may not be appropriate. Results of statistically significant differences in overall mean QoL scores between caregiver and children differed with parametric methods (paired t-tests: P ≤ 0.013) and nonparametric approaches (Wilcoxon signed-rank tests: P ≤ 0.15). Achieved statistical power with nonparametric methods was 97%–99% for differences in subscale and overall QoL scores. Probability plots for the tests for normality showed skewness at extreme values.Conclusion: The currently advocated method for using parametric methods to compare scores from the mPAQLQ and PACQLQ may be incorrect. Using parametric methods with non-normal distributions can lead to errors. This study supports the nonparametric approach (Wilcoxon signed-rank test) for testing for differences between the mPAQLQ and PACQLQ. Instructions for scoring the mPAQLQ and PACQLQ may need to be revised and updated.Keywords: pediatric asthma, quality of life, Mini-Pediatric Asthma Quality of Life Questionnaire, Caregiver’s Pediatric Asthma Quality of Life Questionnaire, nonparametric, Wilcoxon signed-rank test

Pediatric Asthma Caregiver’s Quality of Life Questionnaire is a useful tool for monitoring asthma in children

PurposeThere is little agreement among researchers whether a caregiver’s QOL can be used to detect changes in asthma severity in children. We assessed correlation between QOL in parents and QOL in children with asthma as well as clinical parameters of asthma. We determined whether changes in caregiver’s QOL scores reflect changes in child’s QOL and their asthma control.MethodsThis was a 9-week period cohort study. One hundred and ten primary caregivers with 110 children were seen in the clinic at enrollment, at week #1, #5 and #9. At each visit, the parents completed the Pediatric Asthma Caregiver’s Quality of Life Questionnaire (PACQLQ).ResultsOne hundred and one children and 101 caregivers completed the study. We found a significant correlation between asthma diary score in children and QOL in parents (from r = −0.46 to r = −0.53). We also found significant positive correlation between PAQLQ and PACQLQ and significant association between changes in asthma control and PACQLQ score for both domains. We observed significant change in PACQLQ of caregivers whose children obtained asthma control.ConclusionsPACQLQ is a useful tool for monitoring asthma in children. The implementation of the PACQLQ would be helpful in involving parents in therapy of their children with asthma.

Health-related quality of life (HRQOL) in Latino families experiencing pediatric asthma

The purpose of the present study was to examine health-related quality of life (HRQOL) in Latino children with asthma and their parents. Twenty-six parents completed the Pediatric Asthma Caregivers Quality of Life Questionnaire (PACQLQ), the Health Status and Activities Questionnaire for Children with Asthma (HSAQ) and four subscales from the Family Environment Scale. The results indicated that, overall, neither children with asthma nor their parents showed significant impairments in their HRQOL, though higher illness severity was associated with lower child quality of life and lower parent quality of life related to activity limitations. Other child and family variables, including dimensions of family functioning, did not correlate significantly with HRQOL. However, child and parent HRQOL were significantly associated with each other. This study provides additional context for understanding the experiences of Latino families dealing with pediatric asthma.

Having a child with asthma—Quality of life for Jordanian parents

This study was conducted to assess the quality of life (QoL) of Jordanian parents of children with asthma and its associated factors. Three hundred and twenty-six parents of 200 children participated in the study. The Pediatric Asthma Caregivers' Quality of Life Questionnaire (PACQLQ) was used to measure how parents of children with asthma disease impaired their daily life during the previous week on two domains 'activity limitations' and 'emotional function'. In this study, parents of children with asthma scored their QoL during the past week moderately to the positive end of the scale but they scored more limitations in the domain of activities than in emotions. Parents in the same family scored activity domain fairly similar and there was a significant difference in their scoring of total emotional function. Parents with older children, living in the rural areas, mothers of children with mild asthma were associated with higher QoL. Children received needed daily asthma medication during the preceding week. Asthma medication might mean to the parents that the child was getting the best possible treatment. Further studies to identify the factors that influence QoL of parents of children with asthma in Jordan are needed.

The Impact of Uncontrolled Asthma on Absenteeism and Health-Related Quality of Life

Objective. To evaluate the impact of uncontrolled asthma on the absenteeism and health-related quality of life (HRQOL) of adults and children with asthma and the caregivers of pediatric patients. Patients and methods. Patient information was obtained from datasets maintained by National Jewish Health for this cross-sectional study. Participants in the study were 12 years of age or older. Participants younger than 18 years had their information provided by caregivers. Caregivers also provided 6 months of absenteeism and QOL data. Participants were classified as having uncontrolled asthma based on a treatment and symptom guideline-based algorithm. Absenteeism was assessed from the self-reported number of work or school days missed due to asthma during the previous 6 months. HRQOL among adults was measured using the validated Marks Asthma Quality of Life Questionnaire (Marks-AQLQ) and among caregivers using the validated Pediatric Asthma Caregivers Quality of Life Questionnaire (PACQLQ). To account for the positive skew in absenteeism data, a zero-inflated Poisson regression model was used to compare group differences. HRQOL was analyzed for adults and caregivers using the Wilcoxon-Mann-Whitney test. Results. A total of 15,149 patients met the inclusion criteria for the study and were included in the analysis. Adults with uncontrolled asthma and caregivers of children with uncontrolled asthma reported significantly higher absenteeism than their controlled counterparts: 43% vs 24% adults reported missing days of work, with a median 6 days vs 3 days missed; 31% vs 16% of caregivers reported missing days of work, with 4 days vs 2 days missed; and caregivers reported that more than 70% vs 45% pediatric patients missed school, with a median of 6 days vs 4 days missed (uncontrolled vs controlled asthma, respectively). Adult uncontrolled asthmatics and caregivers of uncontrolled pediatric patients had significantly lower HRQOL as indicated by the Marks-AQLQ (scores 1.5 points higher, p < 0.001) and PACQLQ (scores < 0.5 points lower, p < 0.001), respectively. Conclusions. Uncontrolled asthma has far-reaching impact on the productivity and quality of life of asthma patients and their caregivers. Proper assessment, treatment, and disease management to improve asthma control may reduce the impact of uncontrolled asthma on asthmatic adults, children, and the caretakers of pediatric asthmatic patients.

Evaluation of the Safety and Efficacy of Levalbuterol in 2-5-year-Old Patients with Asthma

The purpose of this study was to evaluate the safety and efficacy of single-isomer (R)-albuterol (levalbuterol, LEV) in children aged 2-5 years. Children aged 2-5 years (n = 211) participated in this multicenter, randomized, double-blind study of 21 days of t.i.d. LEV (0.31 mg or 0.63 mg without regard to weight), racemic albuterol (RAC, 1.25 mg for children <33 pounds (lb); 2.5 mg for children >/=33 lb), or placebo (PBO). Endpoints included adverse-event (AE) reporting, safety parameters, peak expiratory flow (PEF), the Pediatric Asthma Questionnaire(c) (PAQ), and the Pediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ). Baseline disease severity was generally mild in all groups, as defined by PAQ scores that ranged from 6.3-7.3 on a scale of 0-27 and 1.5 days/week of uncontrolled asthma. After treatment, the PAQ decreased in all groups (P = NS). In the subset of subjects able to perform PEF (51.7%), all active treatments improved in-clinic PEF after the first dose (mean +/- SD: PBO, 1.4 +/- 20.8; LEV 0.31 mg, 12.4 +/- 12; LEV 0.63 mg, 16.7 +/- 15.4; RAC, 18.0 +/- 16.5 l/min; P < 0.01). PACQLQ measurements improved more than the minimally important difference only in the LEV-treated groups, and were significant in children <33 lb (P < 0.05). Asthma exacerbations occurred primarily in children >/=33 lb, and one serious asthma exacerbation occurred in the 2.5-mg RAC group. RAC and LEV 0.63 mg, but not LEV 0.31 mg or placebo, led to significant increases in ventricular heart rate. In this study of levalbuterol in children aged 2-5 years with asthma, LEV was generally well-tolerated, and in children able to perform PEF, led to significant bronchodilation compared with placebo.

Having a child with asthma--quality of life for Swedish parents.

Asthma is the most common chronic childhood disease. Childhood asthma contributes significantly to morbidity among children and has a significant impact on the quality of life (QoL) and daily routines of both the children and their parents. The purpose of this study was to investigate how Swedish parents of children with asthma experience their QoL, and to investigate whether there were differences concerning QoL between parents within the same family. The purpose was also to investigate possible connections between their QoL and background variables. A total of 371 parents of children with asthma (57% mothers and 43% fathers) participated in the study. The Paediatric Asthma Caregiver's Quality Of Life Questionnaire (PACQLQ) was used to measure the parents' QoL, i.e. how the child's asthma interferes with the parents' normal activities and how it has made them feel. The findings show that most parents of children with asthma evaluated their QoL as close to the positive end of the scale, and there was close agreement in the scoring between parents within the same family. Significant associations were found between parents' lower QoL outcome and living in the North of Sweden. There were also significant associations between fathers' lower QoL outcome and having a child younger than 13 years of age and mothers' lower QoL outcome and having a child with severe asthma. Although the result shows that a child's asthma did not influence the parents' QoL to a greater degree, it is still important for healthcare workers to help these parents to sustain and improve their well-being. The fact that they just evaluated their QoL during the preceding week only, and did so at the time when their children were being treated with asthma medication, might have influenced the results in a positive direction.

The Impact of Childhood Asthma on Parental Quality of Life

Measuring the quality of life of caregivers is important for interventions designed for young children with asthma. However, little is known about the impact of childhood asthma on parental quality of life for certain subgroups. This study included the families of young urban children with mild persistent to severe persistent asthma. The goal was to evaluate the relationship between caregivers' quality of life and the children's asthma severity, and to consider the influence of sociodemographic factors on the caregivers' quality of life. Children age 3–7 years (63% male, 59% Black, 75% Medicaid), with mild persistent to severe persistent asthma, were identified from a school‐based screening survey. Caregiver quality of life was assessed at baseline and at the end of the study using the Paediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ). Pearson correlation coefficients were used to assess the relationship between the PACQLQ and parent‐reported asthma symptoms during the same time period. For all measures of severity, there was a significant correlation with quality of life (range r = 0.23–0.51, all p < .01). Improvements in the PACQLQ correlated with decreases in symptom scores including symptom days (r = − 0.27, p < .001) and symptom nights (r = − 0.22, p = .005). In a multivariate model, Hispanic ethnicity, the use of daily maintenance medications, and exposure to secondhand smoke independently predicted worse quality of life scores. We conclude that the caretaker's quality of life, as assessed by the PACQLQ, is directly influenced by the child's asthma severity as well as other family factors among a group of young urban children with significant asthma.

Electronic Versus Paper Questionnaires: A Further Comparison in Persons with Asthma

The use of electronic data capture (EDC) to assess health-related quality of life (HRQOL) using validated questionnaires is increasing; however, it must be determined how data collected electronically correlate with the original mode of administration used in validation. Our objective was to compare paper and electronic administration of the standardized Asthma Quality of Life Questionnaire (AQLQ(S)), Pediatric Asthma Quality of Life Questionnaire (PAQLQ(S)), and Pediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ). Using a crossover design, adults and children with asthma and caregivers of children with asthma were recruited from clinics. Subjects were asked to complete both forms of the appropriate HRQOL measures at enrollment and 24–48 hours later. In addition, 30 subjects from each group were asked to participate in a 1-week reproducibility assessment of the electronic versions of the three questionnaires. Psychometric properties were assessed for each of the EDC versions. Intraclass correlation coefficients (ICC) and Pearson correlations were calculated to compare EDC and paper versions. A total of 51 adults (mean age 37, 73% females), 52 children (mean age 13, 38% females), and 51 caregivers (mean age 43, 92% females) were evaluated. Internal consistency (Cronbach's alpha) for the overall score of each questionnaire was: 0.96 for the AQLQ(S) and the PAQLQ(S), and 0.92 for the PACQLQ. Overall ICCs comparing paper with EDC were: 0.96 for the AQLQ(S), 0.91 for the PAQLQ(S), and 0.82 for the PACQLQ. Pearson's correlations were identical. One-week reproducibility (ICC) of the EDC versions was: 0.88 for the AQLQ(S), 0.78 for the PAQLQ(S), and 0.85 for the PACQLQ. When asked which method subjects preferred, the electronic version was chosen by 69% of adults, 77% of children, and 73% of caregivers. Additionally, 14% of adults, 14% of children, and 18% of caregivers reported no difference in preference. As in previous studies comparing electronic with paper questionnaires, this study revealed statistical evidence to support the use of EDC of the AQLQ(S), PAQLQ(S), and PACQLQ for populations with asthma.

Influence of Sociodemographics on the Health-Related Quality of life of Pediatric Patients with Asthma and Their Caregivers

The relationship between socioeconomic variables and the health-related quality of life (HQL) of children with asthma and their caregivers was examined. The Pediatric Asthma Quality of Life Questionnaire (PAQLQ) and Pediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ) were administered to 99 pediatric asthmatic patients and caregivers in two specialty clinics. Sociodemographic data was obtained from medical records and additional questions. The relationship between sociodemographic variables and HQL was determined using multiple linear regression. The mean patient age was 12.6 ± 2.1 years; more were male and from a minority race. The mean age of caregivers was 41.2 ± 8.5 years; most were female and were from a minority race. Patients tended to rate their asthma severity as mild to moderate, while caregivers tended to rate patients in the moderate to severe category. Based on prescribed medications, most patients had mild to moderate asthma. Household income was consistently associated with patient-perceived HQL. Less consistent associations were seen with other variables. Household income and the caregiver's perception of asthma severity were associated with all caregiver HQL domains. It was concluded that household income was most consistently associated with the HQL of asthmatic pediatric patients and their caregivers.

Parents' quality of life and respiratory symptoms in young children with mild wheeze. EASE Study Group.

The Paediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ), measures the impact of child asthma symptoms on family activity (CGAct) and parental anxiety (CGEmot). It has not been validated for families of children <7 yrs, with wheezing illness. This study assessed the sensitivity of the PACQLQ to symptom change in 62 preschool children with wheezing illness. The median age of children was 3 yrs (range 0.8-6 yrs). At entry and 3-month follow-up, parents recorded child respiratory symptoms in a 1-month diary and completed the PACQLQ. On average, children in the study had 7 symptomatic days per month. On entry, mothers < or = 30 yrs had worse scores than those > 30 (p < 0.02), and mothers in less affluent socioeconomic groups had worse scores than those in higher groups (p = 0.05). Change in symptom scores and symptom free days between entry and follow-up was associated with change in PACQLQ scores (r = 0.54-0.57, p <0.001). Thirty-three parents had absolute change in PACQLQ of <0.5 over three months (which has been previously defined as not being clinically significant). Compared to parents with higher PACQLQ change, parents with PACQLQ scores <0.5, did not differ in frequency of child symptoms or in social-demographic factors, but had better quality of life scores on entry to the study (p<0.01). It is concluded that the Paediatric Asthma Caregiver's Quality of Life Questionnaire is sensitive to group measures of child symptom change over 3 months, among preschool children, and this supports its use as an outcome measure in clinical trials. The absolute impact of child symptoms on parent quality of life varies among parents.

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.

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 &lt; 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.

Pilot study of a home-based asthma health education program 1,2

Objective: Caring for a child with asthma can affect the parent’s coping and well-being and coping strategies. This study examined the influence of a home-based asthma health education program on parental coping and quality of life. Design: Randomized controlled non-blinded clinical trial. Setting: Northern community pediatrician’s office. Patients: Families whose children, under the age of 11, had chronic stable asthma, and who presented to the pediatrician’s office for continuing care; those with an acute exacerbation of asthma were excluded. Interventions: Families were randomly assigned to receive either a single two-hour, standardized home-based asthma health education session or a booklet representing conventional care. Main Outcome Measures: One and three-months following the intervention, assessments were obtained for coping measured by Hymovich’s Parent Perception Inventory (PPI), quality of life measured by the Pediatric Asthma Caregiver Quality of Life Questionnaire (PACQLQ) and change in asthma measured by the Caregiver Perception of Change (CPC) survey. Results: Forty families were recruited and randomized; baseline characteristics were similar between groups. At the final follow-up, reduction in parental need for asthma information ( p=0.04), reduction in parental concerns ( p=0.02) and increased use of coping strategies ( p=0.04) were observed in the home-based care group. Improvement was noted in the parent’s perception of their child’s asthma in the home-based asthma education group ( p=0.01). Quality of life as measured by the PACQLQ remained unchanged over the intervention period ( p>0.05). Conclusions: These results suggest the use of a one-time, flexible, home-based intervention to assist families caring for children with asthma should be considered and appears effective.

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. Spirometry and beta-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.