The aim of this study was to determine ethnic and site differences in quality of life (QOL) in a sample of Latino (Puerto Rican and Dominican) and non-Latino White (NLW) caregivers of children with asthma in mainland US and Island PR. We also investigated ethnic and site differences in associations between caregiver QOL and indicators of asthma morbidity.
Seven-hundred and eighty-seven children with asthma (7–16 years of age) and their primary caregivers participated. Primary caregivers completed a measure of QOL, child asthma control, and emergency department utilization, among other measures.
Ethnic and site differences were found on total QOL scores (ΔF(1, 783) = 29.46, p < .001). Island PR caregivers reported worse QOL scores than RI Latino and NLW caregivers; RI Latino caregivers reported significantly worse QOL scores than NLW caregivers. In RI Latino and Island PR children, worse caregiver QOL was associated with asthma that was not in control and with 1 or more ED visits.
Latino caregivers may be experiencing a greater level of burden related to their child’s asthma than NLW caregivers. Caregiver QOL in pediatric asthma may be a reflection of broader, contextual stress that some Latino caregivers experience on a daily basis (e.g., cultural beliefs, acculturation). Future research should continue to investigate mechanisms that explain the burden associated with pediatric asthma in Latino families, as well as whether QOL assessments should consider the impact of everyday stressors on caregiver QOL in pediatric asthma.
pediatric asthma; quality of life; caregivers; disparities; ethnicity
Latino children of Caribbean descent remain at high risk for poorly controlled asthma. Controller medications improve asthma control; however, medication adherence remains suboptimal, particularly among minorities. This study assessed socioeconomic, family-based, and parent factors in medication adherence among children with asthma from Rhode Island (RI; Latino and non-Latino white [NLW]) and Puerto Rico.
Data collection occurred as part of a multicenter study of asthma disparities. Our sample included children (ages 7–16) prescribed objectively monitored controller medications (n = 277; 80 island Puerto Rico, 114 RI Latino, 83 RI NLW). Parents completed questionnaires regarding family background and beliefs about medications. Families participated in an interview regarding asthma management. Multilevel analyses (maximum likelihood estimates) accounting for children being nested within site and ethnic group assessed the contribution of social context, family, and parent variables to medication adherence.
Medication adherence differed by ethnic group (F2, 271 = 7.46, P < .01), with NLW families demonstrating the highest levels of adherence. Multilevel models indicated that parental beliefs about medication necessity and family organization regarding medication use were significant predictors of adherence, even for families below the poverty threshold. With family factors in the model, a substantial improvement in model fit occurred (Akaike Information Criterion change of 103.45).
Adherence to controller medications was lower among Latino children in our sample. Targeted interventions that capitalize on existing family resources, emphasize structure, and address parental beliefs about the importance of medications may be of benefit to families from different cultural backgrounds.
asthma; patient nonadherence; disparities
Approximately 80% of children with asthma have coexisting allergic rhinitis. The accurate recognition and assessment of asthma and rhinitis symptoms is an integral component of guideline-based treatment for both conditions. This article describes the development and preliminary evaluation of a novel paradigm for testing the accuracy of children's assessment of their upper airway (rhinitis) symptoms. This work is guided by our previous research showing the clinical efficacy of tools to evaluate children's perceptual accuracy of asthma symptoms and linking accurate asthma symptom perception to decreased asthma morbidity (Fritz G, et al., Ethnic differences in perception of lung function: A factor in pediatric asthma disparities? Am J Respir Crit Care Med 182:12–18, 2010; Klein RB, et al., The Asthma Risk Grid: Clinical interpretation of symptom perception, Allergy Asthma Proc 251–256, 2004). The pilot study tests a paradigm that allows for the examination of the correspondence of children's assessment of their upper airway functioning with actual values of upper airway flow through the use of a portable, handheld nasal peak flowmeter. Nine children with persistent asthma were evaluated over a 4-week period. The article describes the rhinitis perceptual accuracy paradigm and reviews the results of a pilot study, showing a large proportion of inaccurate rhinitis symptoms “guesses” by the sample of children with persistent asthma. Patterns of inaccuracy, rhinitis control, and asthma morbidity are also described. Directions for future work are reviewed. The development of clinical tools to evaluate children's accuracy of rhinitis symptoms are needed, given the central role of the self-assessment of symptoms in guideline-based care. Accurate perception of the severity of rhinitis symptoms may enhance rhinitis control, lessen the burden of asthma, and prevent unnecessary emergency use among this high-risk group of children.
Allergy; asthma; children; perceptual accuracy; rhinitis; treatment; upper airway
Objective The goal of this study is to identify individual, family/cultural, and illness-related protective factors that may minimize asthma morbidity in the context of multiple urban risks in a sample of inner-city children and families. Methods Participating families are from African-American (33), Latino (51) and non-Latino white (47) backgrounds. A total of 131 children with asthma (56% male), ages 6–13 years and their primary caregivers were included. Results Analyses supported the relationship between cumulative risks and asthma morbidity across children of the sample. Protective processes functioned differently by ethnic group. For example, Latino families exhibited higher levels of family connectedness, and this was associated with lower levels of functional limitation due to asthma, in the context of risks. Conclusions This study demonstrates the utility of examining multilevel protective processes that may guard against urban risks factors to decrease morbidity. Intervention programs for families from specific ethnic groups can be tailored to consider individual, family-based/cultural and illness-related supports that decrease stress and enhance aspects of asthma treatment.
asthma outcomes; cultural factors; inner city; pediatric asthma; protective factors
Objective This article presents a summary of findings from asthma studies focusing on immigration and acculturation-related factors. A study examining associations between these processes, family cohesion and social support networks, and asthma morbidity in a sample of Dominican and Puerto Rican caregivers residing in the mainland U.S., is also described. Methods Latino children with asthma (n = 232), ages 7–16 (49% female) and their caregivers completed interview-based questionnaires on immigration and acculturation-related processes, family characteristics, and asthma morbidity. Results The frequency of ED use due to asthma may be higher for children of caregivers born in Puerto Rico. Acculturative stress levels were higher for Puerto Rican born caregivers residing in the mainland U.S. Conclusion Asthma-related educational and intervention programs for Latino children and families should be tailored to consider the effects that the immigration and acculturation experience can have on asthma management. Specific family-based supports focused on decreasing stress related to the acculturation process, and increasing social and family support around the asthma treatment process may help to reduce asthma morbidity in Latino children.
acculturation; asthma morbidity; immigration
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.
The lifetime prevalence of self-reported asthma among Puerto Ricans is very high, with increased asthma hospitalizations, emergency department visits, and mortality rates. Differences in asthma severity between the mainland and island, however, remain largely unknown.
We sought to characterize differences in asthma severity and control among 4 groups: (1) Island Puerto Ricans, (2) Rhode Island (RI) Puerto Ricans, (3) RI Dominicans, and (4) RI whites.
Eight hundred five children aged 7 to 15 years completed a diagnostic clinic session, including a formal interview, physical examination, spirometry, and allergy testing. Using a visual grid adapted from the Global Initiative for Asthma, asthma specialists practicing in each site determined an asthma severity rating. A corresponding level of asthma control was determined by using a computer algorithm.
Island Puerto Ricans had significantly milder asthma severity compared with RI Puerto Ricans, Dominicans, and whites (P < .001). Island Puerto Ricans were not significantly different from RI whites in asthma control. RI Puerto Ricans showed a trend toward less control compared with island Puerto Ricans (P = .061). RI Dominicans had the lowest rate of controlled asthma. Paradoxically, island Puerto Ricans had more emergency department visits in the past 12 months (P < .001) compared with the 3 RI groups.
Potential explanations for the paradoxic finding of milder asthma in island Puerto Ricans in the face of high health care use are discussed. Difficulties in determining guideline-based composite ratings for severity versus control are explored in the context of disparate groups.
Asthma; severity; control; clinical guidelines; Global Initiative for Asthma; Latino; Puerto Rican; Dominican; Rhode Island; health care use
The purpose of this study is to examine the association between child and parent somatic symptom reporting and pediatric asthma morbidity in Latino and non-Latino white children.
The study consists of 786 children, 7 to 15 years of age, in Rhode Island (RI) and Puerto Rico. Children’s and parents’ levels of general somatic symptoms were assessed with well-established self-report measures. Clinician-determined asthma severity was based on reported medication use, asthma symptom history, and spirometry results. Asthma-related health care use and functional morbidity was obtained via parent self-report.
Child and parent reports of general somatic symptoms were significantly related to pediatric asthma functional morbidity when controlling for poverty, parent education, child’s age, and asthma severity. In controlling for covariates, Latino children in RI reported higher levels of somatic symptoms than Island Puerto Rican children, and RI Latino parents reported more somatic symptoms than RI non-Latino white parents (p < .05).
This study replicates and extends to children in previous research showing higher levels of symptom reporting in Latinos relative to whites. Results also provide new insight into the relation between general somatic symptom reports and pediatric asthma. Ethnic differences in somatic symptom reporting may be an important factor underlying asthma disparities between Latino and non-Latino white children.
asthma; health disparities; somatization
This study examined the relationship between obesity and asthma symptom perception in 200 youth with asthma. Repeated subjective and objective peak flow measurements were summarized using the Asthma Risk Grid (Klein et al., 2004), resulting in Accurate, Symptom Magnification and Danger Zone scores. Analyses were stratified by age and included ethnicity.
For younger children, obesity was not significantly related to perception scores. For older children, a significant obesity-by-ethnicity interaction for Accurate Symptom Perception scores indicated that obese white children had lower accuracy than white nonobese children, while there was no difference for obese versus nonobese minority children. Obesity was also related to higher Symptom Magnification scores regardless of ethnicity for older children.
These findings suggest that obesity may complicate asthma management by interfering with the ability to accurately perceive symptoms for some patients. More remains to be learned about the role of sociodemographic factors underlying this relationship.
Asthma; Body mass index; Obesity; Symptom perception; Children
To determine whether a multi-dimensional cumulative risk index (CRI) is a stronger predictor of asthma morbidity in urban, school-aged children with asthma, than poverty or severity alone.
A total of 163 children with asthma, ages 7–15 years (42% female; 69% ethnic minority) and their primary caregivers completed interview-based questionnaires, focusing on potential cultural, contextual, and asthma-specific risks that can impact asthma morbidity.
Higher levels of cumulative risks were associated with more asthma morbidity, after controlling for poverty level or asthma severity. Analyses by ethnic group and subgroup also supported the relationship between the CRI and specific indices of asthma morbidity.
This study demonstrates the utility of multiple-dimensional risk models for predicting variations in asthma morbidity in urban children. Research efforts with urban families who have children with asthma need to consider the context of urban poverty as it relates to children’s cultural backgrounds and specific asthma outcomes.
asthma risks; urban
The objective of this study was to examine associations between specific dimensions of the multidimensional cumulative risk index (CRI) and asthma morbidity in urban, school-aged children from African American, Latino and Non-Latino White backgrounds. An additional goal of the study was to identify the proportion of families that qualify for high-risk status on each dimension of the CRI by ethnic group. A total of 264 children with asthma, ages 7–15 (40% female; 76% ethnic minority) and their primary caregivers completed interview-based questionnaires assessing cultural, contextual, and asthma-specific risks that can impact asthma morbidity. Higher levels of asthma-related risks were associated with more functional morbidity for all groups of children, despite ethnic group background. Contextual and cultural risk dimensions contributed to more morbidity for African-American and Latino children. Analyses by Latino ethnic subgroup revealed that contextual and cultural risks are significantly related to more functional morbidity for Puerto Rican children compared to Dominican children. Findings suggest which type of risks may more meaningfully contribute to variations in asthma morbidity for children from specific ethnic groups. These results can inform culturally sensitive clinical interventions for urban children with asthma whose health outcomes lag far behind their non-Latino White counterparts.
Pediatric asthma; Cumulative risks; Ethnic minority; Urban
This study determines asthma-related health care access and utilization patterns for Latino children of Puerto Rican and Dominican origin residing in Rhode Island (RI) and Latino children residing in Puerto Rico (Island). Data included 804 families of children with persistent asthma recruited from clinics. Island children were less likely to receive regular asthma care and care from a consistent provider and more likely to have been to the emergency department and hospitalized for asthma than RI children. Island children were 2.33 times more likely to have used the emergency department for asthma compared with RI non-Latino White (NLW) children. Latino children residing in both Island and RI were less likely to have used specialty care and more likely to have had a physician visit for asthma in the past year than RI NLW children. The differences might reflect the effects of the different delivery systems on pediatric health care utilization and asthma management.
asthma; Hispanic Americans; Latino; children; health service accessibility; health care utilization; Puerto Rico
Disparities in asthma outcomes exist between Latino and non-Latino white (NLW) children. We examined rates of medication use, medication beliefs, and perceived barriers to obtaining medication in US and island Puerto Rican parents of children with asthma
Island PR parents would report the lowest rates of controller medication use, followed by RI Latino and RI NLW parents; Latino parents would report more medication concerns than NLW parents; and Island PR parents would report the most barriers to medication use.
Five hundred thirty families of children with persistent asthma participated, including 231 Island PR, 111 RI NLW, and 188 RI Latino. Parents completed survey measures.
Group differences were found on reported use of ICS (X2 = 50.96, P <0.001), any controller medication (X2 = 56.49, P <0.001), and oral steroids (X2 = 10.87, P <0.01). Island PR parents reported a greater frequency of barriers to medication use than the other two groups (X2 = 61.13, P <0.001). Latino parents in both sites expressed more medication concerns than NLW parents (F = 20.18, P <0.001). Medication necessity was associated with ICS use in all three groups (all P’s <0.01). Medication concerns were positively associated with ICS use in PR only (OR = 1.64, P <0.05).
Differences in medication beliefs and the ability to obtain medications may explain the reported disparity in controller medication use. Further studies are needed to evaluate these obstacles to medication use.
disparities; adherence; asthma; ethnicity; childhood; medication use
Epidemiologic studies have documented higher rates of asthma prevalence and morbidity in minority children compared to non-Latino white (NLW) children. Few studies focus on the mechanisms involved in explaining this disparity, and fewer still on the methodological challenges involved in rigorous disparities research.
Objectives and Methods
This article provides an overview of challenges and potential solutions to research design for studies of health disparities. The methodological issues described in this article were framed on an empirical model of asthma health disparities that views disparities as resulting from several factors related to the healthcare system and the individual/community system. The methods used in the Rhode Island–Puerto Rico Asthma Center are provided as examples, illustrating the challenges in executing disparities research.
Several methods are described: distinguishing ethnic/racial differences from methodological artifacts, identifying and adapting culturally sensitive measures to explain disparities, and addressing the challenges involved in determining asthma and its severity in Latino and other minority children. The measures employed are framed within each of the components of the conceptual model presented.
Understanding ethnic and/or cultural disparities in asthma morbidity is a complicated process. Methodologic approaches to studying the problem must reflect this complexity, allowing us to move from documenting disparities to understanding them, and ultimately to reducing them.
asthma; health disparities; Latino; Puerto Rican; children; research methods
Latino and African American children with asthma are at increased risk for asthma morbidity compared with non–Latino White children. Environmental control (ie, environmental exposures and family strategies to control them) may contribute to greater asthma morbidity for ethnic minority children living in urban environments. This study examined ethnic differences in a semi-structured assessment of environmental control, associations between environmental control and asthma outcomes (asthma control, functional limitation, and emergency department [ED] use), and ethnic differences in environmental triggers in a sample of urban Latino, African American, and non–Latino White families. One hundred thirty-three children (6–13 years of age) and their caregivers completed demographic questionnaires, measures of asthma control and morbidity, and a semi-structured interview assessing environmental control. Reported environmental control differed significantly by ethnicity (P<0.05), with Latino families reporting higher levels of environmental control. Reported environmental control was significantly associated with asthma control (P<0.017) and functional limitation (P<0.017). Reported environmental control and ED use were significantly associated in Latino families (P<0.05). Non–Latino White and African American families reported more secondhand smoke exposure than Latino families (P<0.001). Latino families reported more optimal home environmental control than other ethnic groups. Substantial ethnic differences in asthma triggers suggest that observed ethnic disparities in asthma may be due, at least in part, to differences in the home environment.
Rationale: Disparities in pediatric asthma exist in that Latino children have higher prevalence and greater morbidity from asthma than non–Latino white children. The factors behind these disparities are poorly understood, but ethnic-related variations in children's ability to accurately recognize and report their pulmonary functioning may be a contributing process.
Objectives: To determine (1) if differences exist between Latino and non–Latino white children's perceptual accuracy and (2) whether these differences are related to asthma outcomes.
Methods: Five hundred and twelve children, aged 7–16 years (290 island Puerto Ricans, 115 Rhode Island Latinos, and 107 Rhode Island non-Latino white children) participated in a 5-week home-based protocol in which twice daily they entered subjective estimates of their peak expiratory flow rate into a hand-held, programmable spirometer and then performed spirometry. Their accuracy was summarized as three perceptual accuracy scores. Demographic data, asthma severity, intelligence, emotional expression, and general symptom-reporting tendencies were assessed and covaried in analyses of the relationship of perceptual accuracy to asthma morbidity and health care use.
Measurements and Main Results: Younger age, female sex, lower intelligence, and poverty were associated with lower pulmonary function perception scores. Island Puerto Rican children had the lowest accuracy and highest magnification scores, followed by Rhode Island Latinos; both differed significantly from non–Latino white children. Perceptual accuracy scores were associated with most indices of asthma morbidity.
Conclusions: Controlling for other predictive variables, ethnicity was related to pulmonary function perception ability, as Latino children were less accurate than non–Latino white children. This difference in perceptual ability may contribute to recognized asthma disparities.
childhood asthma; symptom recognition; disparities
The purpose of this study was to examine the association between asthma symptom perception measured during a 5–6 week baseline and functional morbidity measured prospectively across a 1-year follow-up. Symptom perception was measured by comparing subjective ratings with peak expiratory flow rate (PEFR) and forced expiratory volume in one second (FEV1). We hypothesized that accurate symptom perception (ASP) would be associated with less functional morbidity. Participants consisted of 198 children with asthma ages 7–17 recruited from three sites. The children used a programmable electronic spirometer in the home setting to guess their PEFR prior to exhalation. Each “subjective” guess was classified as being in an ASP, dangerous symptom perception (DSP; underestimation of symptoms), or symptom magnification (SM; overestimation) zone based upon the corresponding measurement of PEFR or FEV1. An index of functional morbidity was collected by parent report at baseline and across 1-year follow-up. A greater proportion of ASP blows and a lower proportion of DSP blows based on PEFR predicted less functional morbidity reported at baseline, independent of asthma severity and race/ethnicity. A greater proportion of ASP blows (using PEFR and FEV1) and a lower proportion of SM blows (using FEV1) predicted less functional morbidity across 1-year follow-up. Symptom perception was not associated with emergency department visits for asthma at baseline or across follow-up. In comparison to PEFR, FEV1 more frequently detected a decline in pulmonary function that children did not report. Symptom perception measured in naturalistic settings was associated with functional morbidity at baseline and prospectively across 1-year follow-up. Support was found for including multiple measures of pulmonary function in the assessment of asthma symptom perception.
asthma; forced expiratory volume; morbidity; peak expiratory flow rate; perception
This study tested the differential effects of several cognitive and psychological variables on children's perception of asthma symptoms by use of an Asthma Risk Grid. Children's subjective and objective assessments of PEFR (peak expiratory flow rate) were characterized as representing perceptual accuracy, symptom magnification, and/or underestimation of asthma symptoms.
Two hundred and seventy children with asthma (ages 7-17) and their primary caregivers completed measures assessing cognitive and psychological factors and a 5-6 week symptom perception assessment.
Main Outcome Measures:
Children's symptom perception scores by use of the Asthma Risk Grid.
Children's attentional abilities had more of a bearing on their symptom monitoring abilities than their IQ estimates and psychological symptoms. The more time children took on Trails and Cancellation Tasks and the fewer errors they made on these tasks, the more likely they were to perceive their asthma symptoms accurately. More time on these tasks were associated with more symptom magnification scores, and fewer errors were related with fewer symptom magnification scores. More errors and higher total scores on the Continuous Performance Task were associated with a greater proportion of scores in the danger zone.
Statistical support was provided for the utility of attentional-based instruments for identifying children who may have problems with perceptual accuracy, and who are at risk for asthma morbidity.
Asthma; symptom perception; cognitive and psychological factors
This study assesses the relationships between ADHD symptoms, specific family asthma management domains, and pediatric asthma morbidity.
Participants were 110 children with asthma and a respective parent (ages 7-17, X = 11.6 years, 25% ethnic/racial minority). Parents completed measures of asthma morbidity and report of child ADHD symptoms. Children completed measures of attention, concentration, and impulsivity. Families participated in the Family Asthma Management System Scale (FAMSS) interview to assess the effectiveness of eight features of asthma management.
Parent report of ADHD symptoms and poor child performance on a computerized task of sustained visual attention were associated with asthma morbidity. Paper and pencil tasks of visual attention, and an index of auditory attention, were not related to asthma morbidity. Modest associations were found between parent report of ADHD symptoms, child performance-based indicators of attention and concentration, and features of family asthma management, although not across all measures. The family response to asthma partially mediated the relationship between ADHD symptoms and morbidity.
ADHD symptoms are modestly associated with difficulties in family asthma management.
Purpose. We report on the quality of life following treatment for a malignant primary
bone tumour around the knee in skeletally immature children.
Patients. Patients (n = 41; mean age = 18 years; range 8–28) had all
experienced chemotherapy in a neo-adjuvant setting, surgical excision of the tumour and endoprosthetic replacement.
Methods. Interviews were conducted separately with the child and mother and focused
on mobility, body image and the impact of treatment on schooling, employment and plans for the future.
Results. Mobility in the group was variable. Only 12% reported that they could run with
any confidence. The proportion who were able to swim (49%) or ride a bike (46%) was higher.
All had experienced major disruption in schooling (mean absence following diagnosis = 12 months).
Eight had repeated a school year and 41% patients reported that their schoolwork was affected.
As a result of their experience, eight (six females and two males) chose health-related employment.
Concerns for the future were highest among males and those with manual jobs. Three patients were receiving
psychiatric support, in relation to extreme concern about the risk of recurrence. All expressed satisfaction with treatment,
and older patients believed that the prosthesis gave a better quality of life than amputation.
Discussion. Our data suggest that outcome following limb-salvage surgery is variable. Education is disrupted. Even so, only two left school with no qualifications. Employment is most restricted among males with few qualifications who may benefit from sensitive vocational counselling.