Ann McMullen

Symptom perception in childhood asthma: how accurate are children and their parents?

Accurate symptom perception on the part of the patient is a critical component of asthma management. Limited data are available about how accurate children and their parents are in evaluating asthma symptoms. This study was designed to determine the symptom perceptual accuracy of families and to identify risk factors associated with inaccurate symptom perception. One hundred children (6–19 years) and their parents evaluated symptoms using subjective (visual analog scales) as well as objective (peak expiratory flow rates) measures of symptom severity. Accuracy was evaluated by comparing the match in zones (based on NHLBI clinical practice guidelines) indicated on the subjective measure with the objective measure. Children and parents were inaccurate about one-third of the time overall. Poor and minority families initially appeared to be less accurate; however, when we adjusted for the childs illness severity, these sociodemographic features were no longer significant risk factors. Children were as accurate as parents. When we evaluated symptom accuracy at “sick times” (when the childs peak flow reading was <80% personal best) accuracy decreased markedly to only about one-third of the episodes being correctly evaluated.

Symptom monitoring in childhood asthma: a randomized clinical trial comparing peak expiratory flow rate with symptom monitoring

BACKGROUND Accurate symptom evaluation is a critical component of asthma management. Limited data are available about the accuracy of symptom evaluation by children with asthma and their parents, or the impact of various symptom-monitoring strategies on asthma morbidity outcomes. OBJECTIVE The purpose of this randomized clinical trial was to evaluate the effect of three different intensities of symptom monitoring on asthma morbidity outcomes. METHODS One hundred sixty-eight children (ages 6 to 19) of diverse racial, geographic, and socioeconomic backgrounds were randomized to 1 of 3 treatment groups (subjective symptom evaluation, symptom-time peak expiratory flow rate (PEFR) monitoring, daily PEFR monitoring) in this longitudinal, clinical trial. Outcome measures included a summary asthma severity score, forced expiratory volume in 1 second, symptom days, and health care utilization. RESULTS Children who used PEFR meters (PFMs) when symptomatic had a lower asthma severity score, fewer symptom days, and less health care utilization than children in the other two treatment groups. Minority and poor children had the greatest amount of improvement using PFMs when symptomatic. Results were much less striking in white families. Thirty percent of families in the PFM treatment groups discontinued use entirely by 1 year postexit, whereas the majority of families who continued use (94%) used them only when symptomatic to inform symptom interpretation and management decisions. CONCLUSIONS Not every child with asthma needs a PFM. Children and families facing extra challenges as a result of illness severity, sociodemographic, or health care system characteristics clearly benefited most from PFM use.

Longitudinal Assessment of Health-Related Quality of Life in an Observational Cohort of Patients With Cystic Fibrosis

Patient‐reported outcomes (PROs) are increasingly used to evaluate the efficacy of new treatments and the progression of chronic diseases. The Cystic Fibrosis Questionnaire‐Revised (CFQ‐R) is a disease‐specific, PRO measure of health‐related quality of life (HRQOL). We evaluated associations between changes in health status over time and HRQOL in a national CF database.

Lung function decline from adolescence to young adulthood in cystic fibrosis.

Despite improving survival in cystic fibrosis (CF) patients, there is a mortality peak in early adulthood. Defining risk factors that predict significant worsening of lung disease in young adulthood may identify opportunities to improve outcomes in adults.

The impact of the parental illness representation on disease management in childhood asthma.

Background: Despite significant advances in treatment modalities, morbidity due to childhood asthma has continued to increase, particularly for poor and minority children. Objectives: To describe the parental illness representation of asthma in juxtaposition to the professional model of asthma and to evaluate the impact of that illness representation on the adequacy of the childs medication regimen. Methods: Parents (n = 228) of children with asthma were interviewed regarding illness beliefs using a semistructured interview. The impact of background characteristics, parental beliefs, the childs symptom interpretation, and the parent-healthcare provider (HCP) relationship on the adequacy of the childs medication regimen were evaluated. Results: The parental and professional models of asthma differ markedly. Demographic risk factors (p = .005), low parental education (p < .0001), inaccurate symptom evaluation by the child (p = .02), and a poor parent-HCP relationship (p < .0001) had a negative effect on the parental illness representation. A parental illness representation concordant with the professional model of asthma (p = .05) and more formal asthma education (p = .02) had a direct positive effect on the medication regimen. Demographic risk factors (p = .006) and informal advice-seeking (p = .0003) had a negative impact on the regimen. The parental illness representation mediated the impact of demographic risk factors (p = .10), parental education (p =.07), and the parent-HCP relationship (p = .06) on the regimen. Discussion: Parents and HCPs may come to the clinical encounter with markedly different illness representations. Establishing a partnership with parents by eliciting and acknowledging parental beliefs is an important component of improving disease management.

Complementary and Alternative Medicine Use in Children with Asthma: Prevalence and Sociodemographic Profile of Users

Research on complementary and alternative medicine use in children with asthma is in its infancy. This study examined the prevalence, types of CAM used and sociodemographic differences in CAM use among children 5–12 years with asthma. 65% of parents reported using CAM. Usage was highest among black, poor, lesser educated parents and children with persistent symptoms. Types of CAM differed by poverty and a trend for differences by race and education emerged. Health care providers who educate themselves on CAM therapies parents use for asthma can then discuss the implications of using these therapies and potentially improve adherence to the prescribed medication regimen.

Medication Use and Health Care Contacts Among Symptomatic Children With Asthma

OBJECTIVE Asthma morbidity and mortality continue to increase despite the availability of improved therapies. Little is known about the degree to which children with asthma use medications and health care services during symptomatic periods. This study documents prospectively the use of medications and health care contacts among children with active asthma symptoms. METHODS Children age 6--19 years from 11 primary care settings in upstate New York were eligible for this study if they had 3 or more asthma-related medical visits during the prior year. We collected extensive information on asthma symptoms, medication use, and contacts with health care providers from biweekly phone interviews and daily diaries during a 3-month period. Symptoms were evaluated as the average number of symptomatic days per week. We tabulated the proportion of children using anti-inflammatory medications and having health care contacts according to the frequency of their symptoms during this 3-month period. Chi-square and regression analyses were used. RESULTS One hundred sixty-five children participated (67% White, 24% Black, 9% Other). Sixty-five percent of the children in this sample had an average of more than 2 symptomatic days per week or more than 2 symptomatic nights per month during the 3-month study period and thus had mild persistent to severe asthma. Among these children, 25% received prednisone, and 46% reported the use of an inhaled maintenance medication during the monitoring period. Ten percent of children in this sample experienced an average of 6 or more symptomatic days per week during the study period. Among these highly symptomatic children, only 19% received prednisone, and 56% used a maintenance medication. Further, the proportion of children having contact with a health care provider during this 3-month period was 50% or less, even among the children experiencing the most frequent asthma symptoms. There were no differences in the proportion of children with health care contacts, prednisone use, or maintenance anti-inflammatory use among different gender or race categories or with different insurance types or places of residence. CONCLUSIONS Even among children experiencing almost daily asthma symptoms, inadequate anti-inflammatory therapy is common, and few contacts with health care providers occur. These children are silently suffering at home and likely are experiencing preventable morbidity.

Symptom reporting in childhood asthma: a comparison of assessment methods

Background: One barrier to receiving adequate asthma care is inaccurate estimations of symptom severity. Aims: 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. Methods: 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. Results: 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. Conclusions: 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.

An Asthma Management Program for Urban Minority Children

Morbidity and mortality continue to increase for children with asthma. Minority children have disproportionately higher rates of adverse outcomes on almost all disease measures. An asthma management program for urban minority children was developed with research-based intervention strategies and insights gained from the child and family perspectives on illness and health care delivery. The goal of the intervention program was to deliver care that was culturally sensitive, focused on decreasing barriers to appropriate self-management, and committed to promoting partnerships among children, families, the health care system, and the broader community.

Long-term Effects of Pregnancy and Motherhood on Disease Outcomes of Women with Cystic Fibrosis

RATIONALE Studies of pregnancy in cystic fibrosis (CF) have shown no short-term harmful effects, but there are no long-term studies on the impact of motherhood. OBJECTIVES This study sought to evaluate longer-term physiologic and functional outcomes in women with CF reporting a pregnancy, with the intent of assessing how the demands of parenting impacted on disease course. METHODS Using 1994 to 2005 Epidemiologic Study of Cystic Fibrosis data, we developed a propensity score to match women reporting a pregnancy at a 1:10 ratio with never-pregnant control subjects and compared clinical outcomes, health-related quality of life, and health care use. MEASUREMENTS AND MAIN RESULTS One hundred nineteen pregnant women presumed to have become mothers were matched with 1,190 control subjects, a median of 6.0 years (range 1.8-11.1 yr) from the pregnancy. No differences were found in annualized change from baseline FEV1 and body mass index, in respiratory signs and symptoms, or in prescribed chronic therapies. Women who had been pregnant were treated for more pulmonary exacerbations and had more illness-related clinic visits but showed no increase in prescribed chronic therapies. They also reported lower health-related quality-of-life scores for Respiratory Symptoms, Physical Functioning, Vitality, and Health Perceptions. CONCLUSIONS Pregnancy and motherhood do not appear to accelerate disease progression but lead to more illness-related visits, pulmonary exacerbations, and a decrease in some domains of quality of life. These differences presumably reflect the impact of the physical and emotional challenges of early motherhood on disease self-management.