Improving the Health Outcomes of Children With Asthma

Improving Health for Children With Asthma

Childhood Asthma

Improving Health Outcomes for Inner-City Children with Asthma

Improving Health Outcomes for Inner-City Children with Asthma

Centers for Disease Control and Prevention (CDC) engages in active surveillance of childhood asthma because it is prevalent, contributes significantly to childhood morbidity, and imposes an economic burden on families (CDC, 2012). The main recommendations for diagnosing and managing asthma by the National Heart, Lung, and Blood Institute (NHLBI) and the National Asthma Education and Prevention Program (NAEPP) at the National Institutes of Health are: (1) objective measures of lung function, (2) reduce or eliminate environmental triggers, (3) patient and family education, and (4) long-term disease management using comprehensive pharmacotherapy (2007, p. 1). Not only are these recommendations important for limiting the disease burden during childhood, but recent studies have begun to uncover links between chronic childhood respiratory problems and the development of chronic obstructive pulmonary disease (COPD) in older adults (Guerra, Stern, & Morgan, 2013).

Among the children who suffer from asthma, minority children tend to have the worst outcomes (Moorman, Person, Zahran, & CDC, 2013). This is due in part to children and adolescents having poor knowledge about the use and benefits associated with inhaled corticosteroid therapy (Mosnaim et al., 2014). Patient and family education about asthma and treatment regimens therefore represents one important method for reducing not only disease burden, but also health disparities suffered by U.S. children. This research proposal will therefore investigate the efficacy of family education for reducing asthma-associated morbidity and economic burden.

Literature Review

Among all U.S. children, 9.4% have reported current asthma (Howden & Meyer, 2011). Based on the 2010 U.S. Census data this represented almost 7 million children. Asthma attacks among children were also very common, with approximately 56.1% of these children, between the ages of birth and 17-years, reporting an asthma attack during the same period (Moorman, Person, Zahran, & CDC, 2013). In 2007, 185 asthma attacks resulted in the death of the child (AAAAI, 2014). An average of $1,039 was spent annually per child diagnosed with asthma (CDC, 2012), which translates into about $7.2 billion overall. In addition, these children missed 10.5 million days of school in 2008 as a result of their disease (CDC, 2012). When asthma prevalence is examined along racial lines, minorities tend to suffer more (Moorman, Person, Zahran, & CDC, 2013). Close to 17% of non-Hispanic African-American children suffered from asthma in 2009 and between 2001 and 2009 the prevalence of asthma within this demographic nearly doubled (AAAAI, 2014). Poverty and access to health care services therefore play a significant role in determining asthma prevalence.

Efforts to improve health outcomes for minority children with asthma have varied greatly. A recent randomized, controlled trial (RCT) tested the efficacy of peer support and peer messages sent to MP3 players for increasing inhaled corticosteroid therapy (ICT) compliance among minority adolescents, but found no benefit (Mosnaim et al., 2013). When the same research group examined a number of possible predictive factors, including demographic variables, disease history, exacerbations, depression, asthma knowledge, ICT knowledge, and ICT self-efficacy, only older age and less ICT knowledge were significant predictors of low ICT adherence (Mosnaim et al., 2014). These results are consistent with the NHLBI/NAEPP (2007) guidelines recommending patient education as an important disease management strategy with the potential to reduce health disparities.

As Julian and colleagues (2014) noted in their recent research paper, very few studies have examined the efficacy of patient and family education on health outcomes. Accordingly, they studied the impact of a therapeutic education intervention on outcome variables, including child quality of life, caregiver quality of life, treatment compliance, lung function testing, asthma attack incidence, emergency department visits, hospital admissions, missed school days, and parent sick days due to a sick child. The intervention took place in the pediatric pulmonary department at the Clermont-Ferrand teaching hospital in France and consisted of three phases: (1) disease description and written action plan for asthma attacks during the first consultation, (2) individual educational diagnosis by a doctor with patient and caregiver, and (3) group consultation with up to four families and two doctors for the purpose of providing detailed descriptions of asthma pathophysiology, symptomology, triggers, attacks, and treatments. The first two phases occurred on the same day and the third phase a month later. Outcome measures were collected using a pretest and posttest study design without a control, with the posttest taking place four months after the initial consultation.

The quality of life for the children enrolled in the study, which were between the ages of 5- and 11-years, did not improve significantly, but it did for the parents (p < 0.001) (Julian et al., 2014). In addition, emergency department visits (p = .02), unscheduled clinic visits (p < .001), and school absenteeism (p = .009) all declined significantly, while lung function improved (p = .05). The results of this study further support the use of patient and family education for improving the health outcomes of children suffering from asthma.

Theoretical Framework

The findings of Julian et al. (2014) and Mosnaim et al. (2014) suggest that the health outcomes of children with asthma can be significantly improved through patient and caregiver education, which may be an effective means through which health disparities can be reduced. Mosnaim and colleagues (2014) revealed that ICT knowledge predicted treatment compliance in minority children, while Julian and colleagues (2014) discovered an education-based intervention could improve a number of outcome measures among children in France. An education-based intervention would align well with Hildegard Peplau's nursing theory of interpersonal relationships (Coury, Martsolf, Drauker, & Strickland, 2008). Peplau proposed that a nurse can adopt one or more of five helping roles when interacting with patients: stranger, resource person, teacher, leader, surrogate, and counselor. A sixth helping role was added later, which was technical expert.

The helping roles proposed by Peplau that seem relevant to an education-based intervention for improving the health outcomes of children suffering from asthma are resource person, teacher, leader, counselor, and technical expert (Coury, Martsolf, Drauker, & Strickland, 2008). The resource role would provide the patient and caregivers with evidence-based information about asthma and its management, while the teacher role would encourage the retention of the information provided. The nurse as leader would help create a treatment plan, including the steps that should be taken if the child suffers an asthma attack. As counselor, the nurse would facilitate and encourage the patient and caregiver to become proactive about exploring asthma individually and act as a sounding board for any issues that may arise about treatment and conflicting information.

Based on the above analysis the intervention studied by Julian and colleagues (2014) may prove to be effective within an inner city setting in the United States. The target demographic will be minority children and caregivers appearing for the first time in an urban university teaching hospital with a school referral for an asthma evaluation.

Methods and Procedures

Study Design

Julian and colleagues (2014) used a quasi-experimental approach with a pretest/posttest study design. No control group was utilized, which limited the generalizability of the study's findings. The study being proposed here will increase experimental rigor by randomizing the families of children with newly diagnosed asthma to either standard care or standard care plus an intensive education component. All participants will be informed of the overall nature of the study, i.e., the improvement of treatment compliance, but the control group will be blinded to the nature of the intervention. In addition, the pulmonology care team performing the initial evaluation will be blinded to group assignment, as will the pulmonology care team performing posttest lung function tests. The study design being proposed is therefore a blinded, randomized, controlled trial.

Study Participants

Children and their caregivers being referred for the first time to a pediatric pulmonologist for an asthma evaluation will be asked to participate in the study. The inclusion criteria for the child will be a diagnosis of persistent asthma, age between 5- and 17-years, racial or ethnic minority, and family income at or below 200% of the poverty line as determined by the U.S. Department of Health and Human Services (HHS) (2012). For a family of four this would be an annual income of $46,100 in 2012/2013. The exclusion criteria would be the child or caregiver suffering from a comorbid condition that would preclude them from participating in the study, such as a cancer diagnosis or time constraints. The other comorbid conditions that would preclude the child's inclusion in the study would be cystic fibrosis, congenital heart disease, or bronchopulmonary dysplasia.

Ethical Considerations

Since an intensive educational intervention is not considered a standard therapeutic approach within the United States and the children in both the intervention and control groups will still receive standard asthma treatment, no ethical issues exist. All caregivers will be asked to sign an informed consent form and consent will be required before being allowed to participate in the study. Institutional review board approval for this human subjects study will be obtained prior to the onset of subject recruitment.

Intervention

The intervention will be adapted from the intervention used by Julian et al. (2014) and will involve three educational sessions providing progressively more detailed information and intensive counseling. On the same day as the initial evaluation the patient and caregiver will be provided with general information about childhood asthma and treatment modalities. The time allotted for this encounter will be 30 minutes. The nurse will provide this information and answer any questions the patient or caregiver may have. A second encounter lasting 2 hours will occur between 2 and 4 weeks following the initial evaluation and will provide a more detailed presentation of asthma pathophysiology, disease course, and the benefits and risks of treatment modalities. This group counseling session will be attended by patients and caregivers from up to four families and administered by both a nurse and pulmonologist. This session is expected to last between 1.5 and 2.0 hours. The third session will occur a month later, approximately 6 to 8 weeks following the initial evaluation. This will also be a group session and provide an overview of the material presented during the second session, but with more time allotted for questions and answers. The same nurse and doctor will administer this session and the time allotted will be 1 to 2 hours depending on the needs of the attendees. The goal of the final and third session is to promote the retention of the material covered during the second session and allow for any and all questions to be asked by both patients and caregivers.

Standard Care

All children enrolled in the study, regardless of group assignment, will receive standard care. This includes evaluation with spirometry, as recommended by the American Academy of Allergy, Asthma and Immunology (Johnson, & Theurer, 2014). Generally speaking, a diagnosis of asthma will depend on a ratio less than 85% of predicted for FEV1/forced vital capacity (FVC), normal FVC, and a greater than 12% recovery of FEV1 or FVC following bronchodilator challenge, with or without evidence of an obstructive defect, although additional testing may be required. A comprehensive patient history will be taken to evaluate the patient and parents concerning a history of wheezing, eczema, allergic rhinitis, parental asthma, exacerbation frequency, and environmental triggers, in addition to a physical examination (Watts, 2009). Disease management will be based on published treatment guidelines (Watts, 2009) and will at a minimum involve inhaled corticosteroid therapy. All patients will be provided with an Asthma Action Plan detailing the recommended steps for daily control, managing exacerbations, and responding to an asthma attack emergency.

Measures and Other Variables

Pedersen (2013) reviews the prevalent techniques and instruments used to quantitate the degree of success in asthma control, concluding that a 'gold standard' has yet to be found. Lung function testing has its limitations, in part because it is impractical to administer in ambulatory settings, and many of the categorical tests in common use are relatively insensitive to clinically-significant changes in symptoms and exacerbation frequency. Among those recommended are the Pediatric Asthma Quality of Life Questionnaire (PAQLQ) and Pediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ), which has been validated for assessing clinically-significant changes in quality of life. Quality of Life for both the child and caregiver would be dependent on how well symptoms are controlled, and the resulting number of missed school days, unscheduled trips to the medical clinic, emergency department visits, and nocturnal exacerbations. For this reason, both the PAQLQ AND PACQLQ will be used to quantify the quality of life for both child and parent.

The PAQLQ is a 23-item questionnaire that queries a child between 12 and 18 years of age about their emotional state, physical activities, and asthma symptoms (Voorend-van Bergen et al., 2013). All three domains are weighted equally and a maximal score indicates an optimal quality of life. The PACQLQ is a 13-item questionnaire that queries parents about child physical activity and emotional function using a 5-item Likert scale (Juniper et al., 1996). Both instruments are self-administered and can be completed in less than 5 minutes. The PACQLQ will be administered to all caregivers, but for children under 12-years of age the PACQLQ score will be used to quantify the quality of life for both the child and caregiver.

Although forced expiratory volume in 1 second (FEV1) is considered a reliable measure of disease severity in asthma patients, the agreement between this measure and PAQLQ and PACQLQ scores is low (Pedersen, 2013; Juniper et al., 1996). Juniper and colleagues (1996) interpreted this result as consistent with FEV1 being a poor predictor of patient and caregiver quality of life and a moderately accurate measure of disease severity. Despite these significant limitations, FEV1 is probably the most widely used measure in asthma management clinical studies and has therefore become a common denominator. For this reason, FEV1 will be assessed during the study. In addition, study participants will be asked to check lung function daily using an NDD EasyOne Plus Frontline Spirometer ($575, CardiologyForLess.com), which will be provided to each family free of charge. Child or caregiver will record the measurements obtained, before and after inhaled corticosteroid administration, in a diary.

Another problem with current approaches to measuring disease severity in children is accurately determining the impact of symptoms on physical activities (Pedersen, 2013). A daily diary has been tried with some success (Voorend-van Bergen et al., 2013), but most studies have relied on a retrospective evaluation by study participants (Pedersen, 2013). The advances in consumer electronics over the past decade have witnessed amazing developments in personal biometric devices that can track and record physical activity. Fitbit Incorporated (2014) offers three devices that can record physical activity for days at a time, which can then be uploaded into a personal computer for analysis and permanent storage. In an effort to provide a more accurate evaluation of a child's activity during the course of the study period, all children will be provided with a Fitbit Flex (cost $99.99) free of charge. A website will also be created for uploading the data from the device through any computer connected to the internet. Children who may not have access to a computer at home will be able to upload activity data at their school, a public library, when visiting the clinic, or using a smart phone.

Children and caregivers will also be asked to track more objective measures of disease severity, including frequency and severity of exacerbations and the number of unscheduled visits to the clinic, emergency department visits, hospital admissions, missed school days, and caregiver sick days due to a sick child. All study participants will also be asked to provide demographic information during the initial consultation and study interview. The demographic information collected for the child will be age, gender, student status, smoking status, and self-reported racial/ethnic identity. The caregiver demographic information collected will be the number of parents/caregivers and parent/caregiver ages, genders, racial/ethnic identities, smoking status, educational achievements, annual family income, employment status, and histories of pulmonary disease. In addition, the caregivers will be asked to provide the size of family and whether the patient's other siblings also suffer from respiratory problems.