Results of a national survey of asthmatic children that evaluated management goals established in 2004 by the National Asthma Education and Prevention Program (NAEPP) indicated that asthma symptom control fell short on nearly every goal.
An Internet-based survey was administered to adult caregivers of children aged 6-12 years with moderate to severe asthma. Asthma was categorized as uncontrolled when the caregiver reported pre-specified criteria for daytime symptoms, nighttime awakening, activity limitation, or rescue medication based on the NAEPP guidelines. Children's health-related quality of life (HRQOL) and caregivers' quality of life (QOL) were assessed using the Child Health Questionnaire Parent Form 28 (CHQ-PF28) and caregiver's work productivity using a modified Work Productivity and Activity Impairment Questionnaire. Children with uncontrolled vs. controlled asthma were compared.
360 caregivers of children with uncontrolled asthma and 113 of children with controlled asthma completed the survey. Children with uncontrolled asthma had significantly lower CHQ-PF28 physical (mean 38.1 vs 49.8, uncontrolled vs controlled, respectively) and psychosocial (48.2 vs 53.8) summary measure scores. They were more likely to miss school (5.5 vs 2.2 days), arrive late or leave early (26.7 vs 7.1%), miss school-related activities (40.6 vs 6.2%), use a rescue inhaler at school (64.2 vs 31.0%), and visit the health office or school nurse (22.5 vs 8.8%). Caregivers of children with uncontrolled asthma reported significantly greater work and activity impairment and lower QOL for emotional, time-related and family activities.
Poorly controlled asthma symptoms impair HRQOL of children, QOL of their caregivers, and productivity of both. Proper treatment and management to improve symptom control may reduce humanistic and economic burdens on asthmatic children and their caregivers.
The goal of this study was to determine the effectiveness of an asthma educational intervention in improving asthma knowledge, self-efficacy, and quality of life in rural families. Children 6 to 12 years of age (62% male, 56% white, and 22% Medicaid) with persistent asthma (61%) were recruited from rural elementary schools and randomized into the control standard asthma education (CON) group or an interactive educational intervention (INT) group geared toward rural families.
Parent/caregiver and child asthma knowledge, self-efficacy, and quality of life were assessed at baseline and at 10 months post enrollment. Despite high frequency of symptom reports, only 18% children reported an emergency department visit in the prior 6 months. Significant improvement in asthma knowledge was noted for INT parents and young INT children at follow-up (Parent: CON = 16.3; INT = 17.5, p < 0.001; Young children: CON = 10.8, INT = 12.45, p < 0.001). Child self-efficacy significantly increased in the INT group at follow-up; however, there was no significant difference in parent self-efficacy or parent and child quality of life at follow-up. Asthma symptom reports were significantly lower for the INT group at follow-up. For young rural children, an interactive asthma education intervention was associated with increased asthma knowledge and self-efficacy, decreased symptom reports, but not increased quality of life.
asthma education; self-efficacy; quality of life; rural; children
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.
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.
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.
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.
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.
asthma; quality of life; questionnaire; electronic; computerised
Determine factors associated with 24-month change in quality of life in children with asthma and their parents during the Childhood Asthma Management Program (CAMP).
Participants from 4 CAMP clinical centers were administered the Pediatric Asthma Quality of Life questionnaire and protocol measures of asthma symptoms, lung function, and psychological measures.
Multivariate logistic regression analyses determined predictors of moderate change in quality of life. Subclinical levels of depression predicted moderate improvement in child-reported quality of life. Level of depressed affect together with clinical asthma features predicted moderate decline. Improvement in parent quality of life was predicted by perception of illness burden, whereas family features and a child missing school predicted moderate decline.
This ancillary study provided an opportunity to examine the determinants of 24-month change in parent and child of quality of life within a subset of the CAMP participants. Moderate changes in quality of life occur in clinical studies and have both psychosocial correlates as well as illness characteristics.
Asthma; Childhood Asthma Management Program; Quality of life
To reduce symptoms and emergency department (ED) visits, the National Asthma Education and Prevention Program (NAEPP) guidelines recommend early treatment of acute asthma symptoms with albuterol and oral corticosteroids. Yet, ED visits for asthma are frequent and often occur several days after onset of increased symptoms, particularly for children from low-income urban neighborhoods.
To describe home use of albuterol and identify factors associated with appropriate albuterol use.
114 caregivers in the intervention group of a randomized trial to reduce emergent care for low-income, urban children completed a structured telephone interview with an asthma nurse to assess home management of their child’s acute asthma symptoms. Albuterol use as reported by caregivers was categorized as appropriate or inappropriate based on NAEPP recommendations.
Albuterol use for worsening asthma symptoms was categorized as appropriate for only 68% of caregivers and was more likely if the children had an ED visit or hospitalization for asthma in the prior year. The remaining 32% of caregivers used albuterol inappropriately (over or under treatment). Appropriate albuterol use was not associated with caregiver report of having an Asthma Action Plan (AAP) or a recent primary care provider visit to discuss asthma maintenance care.
Caregivers reported they would use albuterol to treat their child’s worsening asthma symptoms, but many described inappropriate use. Detailed assessment of proper albuterol use at home may provide insight into how healthcare providers can better educate and support parents in their management of acute exacerbations and more effective use of AAPs.
Childhood asthma; asthma action plan
Providing care for children with asthma can be demanding and time-intensive with far-reaching effects on caregivers’ lives. Studies have documented childhood asthma symptom reductions and improved asthma-related quality of life (AQOL) with indoor allergen-reducing environmental interventions. Few such studies, however, have considered ancillary benefits to caregivers or other family members. Ancillary benefits could be derived from child health improvements and reduced caregiving burden or from factors such as improved living environments or social support that often accompanies intensive residential intervention efforts. As part of the Boston Healthy Public Housing Initiative (HPHI), a longitudinal single-cohort intervention study of asthmatic children, we examined trends in caregivers’ quality of life related to their child’s asthma (caregiver AQOL) using monthly Juniper Caregiver Asthma Quality of Life Questionnaires (AQLQ) for 32 primary caregivers to 42 asthmatic children aged 4 to 17 years. Longitudinal analyses were used to examine caregiver AQOL trends and their relationship to the child’s AQOL, then to consider additional predictors of caregiver AQOL. Caregiver AQLQ improved significantly over the course of the study with overall improvements significantly correlated with child AQOL (p = 0.005). However, caregiver AQOL improved most in the months before environmental interventions, while children’s AQOL improved most in the months following. Time trends in caregiver AQOL, controlling for child AQOL, were not explained by available social support or caregiver stress measures. Our findings suggest potential participation effects not adequately captured by standard measures. Future environmental intervention studies should more formally consider social support and participation effects for both children and caregivers
Urban childhood asthma; Quality of life; Environmental interventions; Psychological factors
OBJECTIVES: To demonstrate the effectiveness of community asthma education provided by peers in the urban community. METHOD: A convenience sample of 267 self-referred, primarily African-American parents or primary caregivers of asthmatic children aged 18 months to 16 years completed a five-session education program. Program efficacy was evaluated at baseline, immediately postinstruction, and at three-, six-, and 12 months retention. Outcomes included three questionnaires measuring asthma self-management knowledge, control and quality of life. RESULTS: Immediately following program completion, participants demonstrated improvements in asthma knowledge (13% increased proportion correct, p < 0.01), ability to control their child's asthma 16% increased score, p < 0.01), and asthma quality of life (7% increased score, p < 0.01). Retention of knowledge with steady improvement of control and quality of life was observed up to one year postinstruction, as compared with immediate postprogram scores (p = 0.09 and 0.05, respectively). CONCLUSIONS: A community-based asthma educational program for caregivers should be an important component of childhood asthma management. The complexities of asthma management are best taught in educational programs that are easily accessible, provide a comfortable environment for participants, and are taught by peers.
It is postulated that children with asthma who receive an interactive, comprehensive education program would improve their quality of life, asthma management and asthma control compared with children receiving usual care.
To assess the feasibility and impact of ‘Roaring Adventures of Puff’ (RAP), a six-week childhood asthma education program administered by health professionals in schools.
Thirty-four schools from three health regions in Alberta were randomly assigned to receive either the RAP asthma program (intervention group) or usual care (control group). Baseline measurements from parent and child were taken before the intervention, and at six and 12 months.
The intervention group had more smoke exposure at baseline. Participants lost to follow-up had more asthma symptoms. Improvements were significantly greater in the RAP intervention group from baseline to six months than in the control group in terms of parent’s perceived understanding and ability to cope with and control asthma, and overall quality of life (P<0.05). On follow-up, doctor visits were reduced in the control group.
A multilevel, comprehensive, school-based asthma program is feasible, and modestly improved asthma management and quality of life outcomes. An interactive group education program offered to children with asthma at their school has merit as a practical, cost-effective, peer-supportive approach to improve health outcomes.
Asthma education; Childhood asthma; Program evaluation; Quality of life; School-based program
To describe nocturnal asthma symptoms among urban children with asthma and assess the burden of sleep difficulties between children with varying levels of nocturnal symptoms.
We analyzed baseline data from 287 urban children with persistent asthma (ages 4–10) enrolled in the School-Based Asthma Therapy trial; Rochester, NY. Caregivers reported on nocturnal asthma symptoms (# nights/2 weeks with wheezing or coughing), parent quality of life (Juniper’s PACQLQ), and sleep quality using the validated Children’s Sleep Habits Questionnaire. We used bivariate and multivariate statistics to compare nocturnal asthma symptoms with sleep quality/quantity and quality of life.
Most children (mean age 7.5yrs) were Black (62%); 74% had Medicaid. Forty-one percent of children had intermittent nocturnal asthma symptoms, 23% mild persistent, and 36% moderate to severe. Children’s average total sleep quality score was 51 (range 33–99) which is above the clinically significant cut-off of 41, indicating pervasive sleep disturbances among this population. Sleep scores were worse for children with more nocturnal asthma symptoms compared to those with milder symptoms on total score, as well as several subscales including night wakings, parasomnias, and sleep disordered breathing (all p<.03). Parents of children with more nocturnal asthma symptoms reported their child having fewer nights with enough sleep in the past week (p=.018) and worse parent quality of life (p<.001).
Nocturnal asthma symptoms are prevalent in this population, and are associated with poor sleep quality and worse parent quality of life. These findings have potential implications for understanding the disease burden of pediatric asthma.
asthma; childhood; symptoms; sleep; quality of life; smoke
Nurse practitioners (NPs) have a unique opportunity as frontline caregivers and patient educators to recognize, assess, and effectively treat the widespread problem of uncontrolled asthma. This review provides a perspective on the role of the NP in implementing the revised National Asthma Education and Prevention Program (NAEPP) Guidelines put forth by the National Heart, Lung, and Blood Institute, thereby helping patients achieve and maintain asthma control. A literature search of PubMed was performed using the terms asthma, nurse practitioner, asthma control, burden, impact, morbidity, mortality, productivity, quality of life, uncontrolled asthma, NAEPP guidelines, assessment, pharmacotherapy, safety. Despite the increased morbidity and mortality and impaired quality of life attributable to uncontrolled asthma, the 2007 NAEPP asthma guidelines are greatly underused. NPs have an opportunity to identify patients at risk and provide enhanced care and education for asthma control. Often, NPs can prescribe medication for and manage these patients, but it is necessary to be able to discern which patients require referral to a specialist.
asthma control; asthma medications; education; NAEPP guidelines; nurse practitioner; referral
This study explored the psychometric properties (internal consistency, construct validity, discriminative ability) of the Juniper Mini Asthma Quality of Life Questionnaire (Mini AQLQ-J) and the Sydney Asthma Quality of Life Questionnaire (AQLQ-S).
One hundred fourty-six adults (18–45 years) with asthma requiring regular inhaled corticosteroids were recruited to a trial of written emotional disclosure. Correlational analyses were performed to understand the relationship of the two measures with each other, with symptoms, lung function, asthma control, asthma bother and generic quality of life. Median quality of life scores were compared according to gender, health care usage and levels of asthma severity.
AQLQ-J and AQLQ-S total scores correlated strongly with each other (rho = −0.80) and moderately with the EuroQol Current Health Status Scale (AQLQ-J: rho = 0.35; AQLQ-S: rho = −0.40). Domain score correlations between AQLQ-J and AQLQ-S were mostly moderate (0.50 < rho < 0.80).
Both QoL measures were significantly correlated with symptom score. Correlations with the symptom score asthma module (AQLQ-J: rho = −0.69; AQLQ-S: rho = 0.50) were stronger compared with the total symptom score and the symptom score rhinitis module (AQLQ-J: rho = −0.41; AQLQ-S: rho =0.31).
Neither QoL measure was significantly correlated with FEV1, % predicted at the total or the domain level.
Total scores of both measures were significantly correlated with subjective asthma control (AQLQ-J: rho = 0.68; AQLQ-S: rho = −0.61) and asthma bother (AQLQ-J: rho = −0.73; AQLQ-M: rho = 0.73).
Total AQLQ-J score and total AQLQ-S score were significantly associated with perceived asthma severity (AQLQ-J: p=0.004, AQLQ-S: p=0.002) and having visited a GP in the past four months (AQLQ-J: p=0.003, AQLQ-S: p=0.002).
This study provides further evidence for the validity of the AQLQ-J and the AQLQ-S in a British population of adult patients with asthma managed in primary care. Correlations with lung function parameters were weak or absent. Correlations with generic quality of life were moderate, those with asthma symptoms, asthma control and asthma bother were strong. Both measures are able to discriminate between levels of asthma severity and health care usage.
The unpredictable nature of asthma makes it stressful for children and can affect their quality of life. An exploratory analysis of 183 rural school-aged children's data was conducted to determine relationships among demographic factors, children's responses to asthma (coping, asthma self-management), and their quality of life (QOL). Coping frequency, asthma severity, and race/ethnicity significantly predicted children's asthma-related QOL. Children reported more frequent coping as asthma-related QOL worsened (higher scores). Children with more asthma severity had worse asthma-related QOL. Post-hoc analyses showed that racial/ethnic minorities reported worse asthma-related QOL scores than did non-Hispanic Whites.
To determine the effect of a peer led programme for asthma education on quality of life and related morbidity in adolescents with asthma.
Cluster randomised controlled trial.
Six high schools in rural Australia.
272 students with recent wheeze, recruited from a cohort of 1515 students from two school years (mean age 12.5 and 15.5 years); 251 (92.3%) completed the study.
A structured education programme for peers comprising three steps (the “Triple A Program”).
Main outcome measures
Quality of life, school absenteeism, asthma attacks, and lung function.
When adjusted for year and sex, mean total quality of life scores showed significant improvement in the intervention than control group. Clinically important improvement in quality of life (>0.5 units) occurred in 25% of students with asthma in the intervention group compared with 12% in the control group (P=0.01). The number needed to treat was 8 (95% confidence interval 4.5 to 35.7). The effect of the intervention was greatest in students in year 10 and in females. Significant improvements occurred in the activities domain (41% v 28%) and in the emotions domain (39% v 19%) in males in the intervention group. School absenteeism significantly decreased in the intervention group only. Asthma attacks at school increased in the control group only.
The triple A programme leads to a clinically relevant improvement in quality of life and related morbidity in students with asthma. Wider dissemination of this programme in schools could play an important part in reducing the burden of asthma in adolescents.
Background and Objective
Asthma is the most common chronic pediatric disease and exacts a toll on the health-related quality of life of affected children and their primary caregivers. This investigation describes the relationship between the clinical severity of asthma among inner-city children and their quality of life and that of their primary adult caregivers.
Telephone interview data were collected from individual adult caregivers of 5-12-year-old children with asthma. Questions addressed the history, diagnosis, and management of the child's asthma, the child's family and social background, the family's socioeconomic status, the caregiver's knowledge and attitude about asthma, and the health-related quality of life of both the child and the caregiver. An asthma severity score was calculated from the caregiver's responses to questions about their child's wheezing frequency, nocturnal and early morning symptoms, and speaking during an asthma attack, as well as the impact of the disease on their child's physical activity and breathing during the prior 4-month period. A clinical asthma triage score was determined from information collected at the emergency department about the child's oxygen saturation, alertness, use of accessory respiratory muscles, extent of breathlessness, and peak expiratory flow. Spearman correlation coefficients were used to identify association between quality of life and disease severity, caretaker's asthma knowledge, and functional impact of asthma symptoms.
Data from 240 of 755 eligible children were analyzed. Most children were younger than 11 years, male, black, and non-Hispanic. The children's median duration of asthma diagnosis was 86% of their life (range less than 1 to 11.3 years, median 5.0 years). Of the primary caregivers, 69% had at least completed high school, and 90% reported a total monthly household income of $1,600 or less. The maximum possible quality-of-life score and the median for caregivers were 91 and 70, respectively; for children, the same scores were 69 and 58, respectively. In addition, there was significant negative correlation of the quality-of-life scores of both the caregivers and children with the number of schooldays the children missed (r=−0.24 andr=−0.26, respectively,P<.001 for both) and the caregivers' and children's asthma severity scores (r=−0.39 andr=0−.47, respectively,P<.001 for both). The quality-of-life scores of the children and caregivers did not correlate significantly with the asthma triage scores.
The questionnaires captured baseline quality-of-life information about this urban population and will facilitate longitudinal monitoring. The fact that the quality-of-life scores of children with asthma correlated with those of their adult caregivers, but not with their clinical triage scores, highlights the impact of asthma on families and the importance of having a long-term comprehensive management plant that is not based on exacerbations, but that includes both the children and their primary caregivers.
Asthma; Health-Related Quality of Life; Pediatrics
There 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.
This 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).
One 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.
PACQLQ 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.
Quality of life; Parents; Children; Asthma
This article reports on the development of a personalized, Web-based asthma-education program for parents whose 4- to 12-year-old children have moderate to severe asthma. Personalization includes computer-based tailored messages and a human coach to build asthma self-management skills. Computerized features include the Asthma Manager, My Calendar/Reminder, My Goals, and a tailored home page. These are integrated with monthly asthma-education phone calls from an asthmanurse case manager. The authors discuss the development process and issues and describe the current randomized evaluation study to test whether the yearlong integrated intervention can improve adherence to a daily asthma controller medication, asthma control, and parent quality of life to reduce asthma-related healthcare utilization. Implications for health education for chronic disease management are raised.
asthma case management; medication adherence-pediatric asthma; pediatric asthma; program development-pediatric asthma; nurse case management; chronic disease selfmanagement; eHealth; interactive health communication
Caregivers who smoke and have children with asthma are an important group for intervention. Home-based interventions successfully reduce asthma morbidity, yet are costly. This study evaluated the financial return on investment (ROI) of the Parents of Asthmatics Quit Smoking (PAQS) program, a combined asthma education and smoking cessation intervention.
Participants included caregivers (n = 224) that smoked, had a child with asthma, and were enrolled in a Medicaid managed care plan. Participants received nurse-delivered asthma education and smoking counseling in three home visits. Program implementation costs were estimated, and health care expenses were obtained from insurance claims data 12 months pre- and 12 months post intervention. ROI was calculated for all participants, children < 6 years, children 6–18 years, and children with moderate/severe persistent asthma.
Total program implementation cost was $34,481. After intervention, there was increased mean annual refills of beta-agonist (0.51 pre, 1.64 post; p<0.001), and controller medications (0.65 pre, 2.44 post; p<0.001). Reductions were found in mean annual emergency department visits (0.33 pre, 0.14 post; p<0.001), hospitalizations (0.23 pre, 0.08 post; p<0.001), and outpatient visits (2.33 pre, 1.45 post, p<0.001). The program had negative ROI (−21.8%) for the entire sample. The ROI was positive (+106.9) for children < six years, negative (−150.3) for children 6–18, and negligible for moderate/severe persistent asthma (+6.9%).
PAQS was associated with increased medication use and decreased health care utilization. While the overall ROI for PAQS was negative, PAQS had a positive ROI for caregivers of young children with asthma.
Asthma; Pediatrics; Smoking Cessation; Education
Urban minority populations experience increased rates of obesity and increased asthma prevalence and severity.
We sought to determine whether obesity, as measured by body mass index (BMI), was associated with asthma quality of life or asthma-related emergency department (ED)/urgent care utilization in an urban, community-based sample of adults.
This is a cross-sectional analysis of 352 adult subjects (age 30.9±6.1, 77.8% females, FEV1%pred=87.0%±18.5) with physician diagnosed asthma from a community-based Chicago cohort. Outcome variables included the Juniper Asthma Quality of Life Questionnaire (AQLQ) scores and health care utilization in the previous 12 months. Bivariate tests were used as appropriate to assess the relationship between BMI or obesity status and asthma outcome variables. Multivariate regression analyses were performed to predict asthma outcomes, controlling for demographics, income, depression score, and beta-agonist use.
191 (54.3%) adults were obese (BMI>30 kg/m2). Participants with a higher BMI were older (p=0.008), African American (p<0.001), female (p=0.002), or from lower income households (p=0.002). BMI was inversely related to overall AQLQ scores (r =−0.174, p=0.001) as well as to individual domains. In multivariate models, BMI remained an independent predictor of AQLQ. Obese participants were more likely to have received ED/urgent care for asthma than non-obese subjects (OR=1.8, p=0.036).
In a community-based sample of urban asthmatic adults, obesity was related to worse asthma-specific quality of life and increased ED/urgent care utilization. However, compared to other variables measured such as depression, the contribution of obesity to lower AQLQ scores was relatively modest.
Asthma; obesity; urban; healthcare disparities; health outcomes
One barrier to receiving adequate asthma care is inaccurate estimations of symptom severity.
To interview parents of children with asthma in order to: (1) describe the range of reported illness severity using three unstructured methods of assessment; (2) determine which assessment method is least likely to result in a “critical error” that could adversely influence the child's care; and (3) determine whether the likelihood of making a “critical error” varies by sociodemographic characteristics.
A total of 228 parents of children with asthma participated. Clinical status was evaluated using structured questions reflecting National Asthma Education and Prevention Panel (NAEPP) criteria. Unstructured assessments of severity were determined using a visual analogue scale (VAS), a categorical assessment of severity, and a Likert scale assessment of asthma control. A “critical error” was defined as a parent report of symptoms in the lower 50th centile for each method of assessment for children with moderate–severe persistent symptoms by NAEPP criteria.
Children with higher severity according to NAEPP criteria were rated on each unstructured assessment as more symptomatic compared to those with less severe symptoms. However, among the children with moderate–severe persistent symptoms, many parents made a critical error and rated children in the lower 50th centile using the VAS (41%), the categorical assessment (45%), and the control assessment (67%). The likelihood of parents making a critical error did not vary by sociodemographic characteristics.
All of the unstructured assessment methods tested yielded underestimations of severity that could adversely influence treatment decisions. Specific symptom questions are needed for accurate severity assessments.
asthma; symptoms; parent assessments; preventive care
Objective Using structural equation modeling, test a conceptual model of associations between constructs predicting parent and child asthma quality of life. Methods Children with a confirmed asthma diagnosis and their parents completed measures of health status and independently reported on psychological functioning, family functioning, and quality of life. Results Measurement and structural models for predicting parent and child quality of life provided a good fit of data to the conceptual model. Parent and child independent reports of quality of life are dependent upon family functioning and child psychological functioning. Long-term asthma symptom control is the only health status variable that impacts quality of life. Conclusions With minor modifications, both parent and child data fit the conceptual model. Child psychological functioning and long-term asthma control jointly contribute to quality of life outcomes. Findings suggest that both acute and long-term asthma health status outcomes have different determinants.
asthma; quality of life; structural equation modeling
The Minneapolis and St. Paul Controlling Asthma in American Cities Project (CAACP) used a school-based symptom survey to inform community-based programming and provide an intermediate outcome measure of progress toward reducing the burden of asthma. In collaboration with the two school districts, the project mailed the Child Asthma Short Form, a validated health-related quality of life instrument to parents of children in grades K–8 every other school year from 2003 to 2007. The survey was mailed to a randomly selected sample in four languages (English, Spanish, Hmong, and Somali). The overall response rate was 47%, 41%, and 32% for years 1, 3, and 5, respectively. Two out of three children for whom surveys were completed were children of minority populations; more than 50% were eligible for free or reduced-price meals. The changes in scores from the first round (2003–2004) to the third round (2007–2008) were statistically significant for daytime symptom burden (p < 0.05). Improvements were noted, but not statistically significant, for nighttime symptoms and functional limitations. Children of some racial/ethnic minority groups and children eligible for free or reduced-price meals had the highest symptom burden. Findings were used to guide CAACP’s program development and delivery to populations in greatest need. CAACP’s experience in Minneapolis and St. Paul demonstrates the feasibility of administering a symptom burden survey at low cost and in compliance with school system and institutional review board requirements to maintain confidentiality. The symptom-based survey may be a useful tool to track trends and changes in health disparities at a community and population level.
Symptom burden; School-based survey; Asthma; Health disparities; Child asthma short form
To examine the relationship between depressive symptoms and asthma beliefs (self efficacy and empowerment), child asthma outcomes, and caregiver’s quality of life among Puerto Rican caregivers of children with asthma.
The caregivers of 221 children with persistent bronchial asthma were stratified into those with no/low or high levels of depressive symptoms. Differences between the groups in caregiver self-efficacy, family empowerment, child asthma outcomes and quality of life were examined.
Caregivers with more depressive symptoms reported lower self-efficacy, less empowerment, less symptom free days and nights for their children and a lower quality of life compared to caregivers with no or fewer depressive symptoms.
Depressive symptoms among Puerto Rican caregivers were associated with asthma beliefs, children’s asthma symptoms and caregiver quality of life. Our findings reinforce the importance of physician screening skills in recognizing caregiver depression in parents of asthma patients.
caregiver depression; pediatric asthma; asthma outcomes
Aim: To evaluate the effectiveness of a programme of asthma clubs in improving quality of life in primary school children with asthma.
Methods: A cluster randomised intervention trial was undertaken in 22 primary schools within the urban area of south and east Belfast, Northern Ireland. Schools were randomised in pairs to immediate or delayed groups. The study subjects comprised 173 children aged 7–11 years whose parents had notified the school of their asthma diagnosis. Children attended school based weekly clubs over an 8 week period. The main outcome measures were the interview administered Paediatric Quality of Life Questionnaire scores, ranging from 1 (worst) to 7 (best), spirometry, and inhaler technique.
Results: Over 15 weeks, small but non-significant improvements in the overall quality of life score (mean 0.20; 95% confidence interval (CI) –0.20 to 0.61) and in each of its three components, activity limitation (0.20; –0.43 to 0.84), symptoms (0.23; –0.23 to 0.70), and emotional function (0.17; –0.18 to 0.52), were observed in the immediate compared with the delayed group. Inhaler technique at week 16 was markedly better in the immediate group, with 56% having correct technique compared with 15% in the delayed group. No significant effect of the intervention on spirometry results could be demonstrated.
Conclusion: This primary school based asthma education programme resulted in sustained improvements in inhaler technique, but changes in quality of life scores were not significant.
Children living in urban environments have many risk factors for disrupted sleep, including environmental disturbances, stressors related to ethnic minority status, and higher rates of stress and anxiety. Asthma can further disrupt sleep in children, but little research has examined the effects of missed sleep on asthma morbidity.
To examine the associations among missed sleep, asthma-related quality of life (QoL), and indicators of asthma morbidity in urban children with asthma from Latino, African American, and non-Latino white backgrounds. Given the importance of anxiety as a trigger for asthma symptoms and the link between anxiety and disrupted sleep, the associations among anxiety, asthma morbidity indicators, and missed sleep were also tested.
Parents of 147 children ages 6 to 13 years completed measures of asthma morbidity and missed sleep, parental QoL, and child behavior.
Higher reports of missed sleep were related to more frequent school absences, more activity limitations, and lower QoL across the sample. The associations between missed sleep and asthma morbidity were stronger for Latino children compared with non-Latino white and African American children. For children with higher anxiety, the associations between missed sleep and asthma morbidity were stronger than for children with lower anxiety.
Results offer preliminary support for missed sleep as a contributor to daily functioning of children with asthma in urban neighborhoods. Missed sleep may be more relevant to Latino families. Furthermore, anxiety may serve as a link between sleep and asthma morbidity because higher anxiety may exacerbate the effects of disrupted sleep on asthma.
To compare the marginal benefit of in-home asthma self-management support provided by community health workers (CHWs) with standard asthma education from clinic-based nurses.
Randomized controlled trial.
Community and public health clinics and homes.
Three hundred nine children aged 3 to 13 years with asthma living in low-income households.
All participants received nurse-provided asthma education and referrals to community resources. Some participants also received CHW-provided home environmental assessments, asthma education, social support, and asthma-control resources.
Asthma symptom–free days, Pediatric Asthma Caretaker Quality of Life Scale score, and use of urgent health services.
Both groups showed significant increases in caretaker quality of life (nurse-only group: 0.4 points; 95% confidence interval [CI], 0.3–0.6; nurse + CHW group: 0.6 points; 95% CI, 0.4–0.8) and number of symptom-free days (nurse only: 1.3 days; 95% CI, 0.5–2.1; nurse + CHW: 1.9 days; 95% CI, 1.1–2.8), and absolute decreases in the proportion of children who used urgent health services in the prior 3 months (nurse only: 17.6%; 95% CI, 8.1%–27.2%; nurse + CHW: 23.1%; 95% CI, 13.6%–32.6%). Quality of life improved by 0.22 more points in the nurse + CHW group (95% CI, 0.00–0.44; P=.049). The number of symptom-free days increased by 0.94 days per 2 weeks (95% CI, 0.02–1.86; P = .046), or 24.4 days per year, in the nurse + CHW group. While use of urgent health services decreased more in the nurse + CHW group, the difference between groups was not significant.
The addition of CHW home visits to clinic-based asthma education yielded a clinically important increase in symptom-free days and a modest improvement in caretaker quality of life.