Uncontrolled asthma: assessing quality of life and productivity of children and their caregivers using a cross-sectional Internet-based survey

Abstract

BackgroundResults 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.MethodsAn 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.Results360 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.ConclusionsPoorly 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.

Measurement Properties of the Arabic Lebanon Version of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales for Young Child (5 - 7 years), and Child Aged 8 - 12 Years: Quality of Life of in Urban and Rural Children in Lebanon

“…The presence of a relation between the dimensions of Peds 4.0 and the sociodemographic and clinical parameters is an important finding as such instruments could be used in therapeutic evaluations (Upton et al, 2005;Ware, 1997;Dean et al, 2010). Our results are in contrast with other results that have failed to observe gender differences (Varni et al, 2007;Varni et al, 2003) or found fewer negative associations (Reinfjell et al, 2006;Villalonga-Olives et al, 2010).…”

“…As expected, self-reported scores for overall HRQOL of cancer children were more impaired than those of healthy children (Eiser, Eiser, & Stride, 2005;Sung et al, 2009;Sandeberg, Johansson, Hagell, & Wettergren, 2010;Varni, Limbers, & Burwinkle, 2007). School functioning was most impacted by chronic health conditions, as reflected by the higher rates of school absences (Dean et al, 2010), and quit of school. It should be noted that 11.6% of Lebanese pediatric cancer were outside the school and at risk to be illiterate people.…”

“…Prior research has shown that the family members influence each other mutually (Hatzmann et al, 2009;Panepinto et al, 2009;Duhamel, 2007), therefore, the family with children who have a chronic disease may have greater family burden, and need social support (Hatzmann et al, 2009;Panepinto et al, 2009). As has been reported in several studies (Dean et al, 2010;Abdel Hai, Taher, & Fattah, 2010;Farnik et al, 2010), it is well established that children with chronic conditions have significant impairments in HRQoL. As expected, self-reported scores for overall HRQOL of cancer children were more impaired than those of healthy children (Eiser, Eiser, & Stride, 2005;Sung et al, 2009;Sandeberg, Johansson, Hagell, & Wettergren, 2010;Varni, Limbers, & Burwinkle, 2007).…”

Asthma and Health Related Quality of Life in Childhood and Adolescence

“…While there are several questionnaires for assessing parental/caregiver's health related quality of life not directly related to asthma (Osman & Silverman, 1996), there is only one instrument to examine the specific impact of childhood asthma on parental/caregiver functioning: The Pediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ) . Whereas some studies find no association between caregiver's health related quality of life and children's asthma symptoms (Annett et al, 2003), duration of asthma illness and asthma pre-treatment severity (Vila et al, 2003), other studies report that caregiver's and child's health related quality of life are significantly associated with each other (Dean et al, 2009(Dean et al, , 2010Garro, 2011;Halterman et al, 2004). Halterman et al (2004) find that higher symptom levels with regard to childhood asthma are associated with lower parental health related quality of life.…”

“…Caregivers of asthmatic children appear to be more compromised in their resistance to stress, mood, emotional stability, amount of spare time and leisure activities (Garro, 2011). Caregivers of children with uncontrolled asthma report significantly higher absenteeism than their controlled counterparts (Dean et al, 2009(Dean et al, , 2010. Both caregiver's health related quality of life, caregiver's perception of the child's asthma symptoms, and the child's health related quality of life may be important in diagnosis and control of established asthma in childhood (Skoner, 2002).…”