587089
research-article2015
CPJXXX10.1177/0009922815587089Clinical PediatricsBrigham et al
Article
Associations Between Parental Health Literacy, Use of Asthma Management Plans, and Child’s Asthma Control
Clinical Pediatrics 1–7 © The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0009922815587089 cpj.sagepub.com
Erin L. Brigham, MPH1, Larry Goldenberg, MD, MBA2, Adrienne Stolfi, MSPH1, Gary A. Mueller, MD1, and Shalini G. Forbis, MD, MPH1
Abstract Background. There are some studies demonstrating the effectiveness of the provision of written asthma action plans in improving asthma outcomes. There exist little data on the ability of parents to use these plans to make asthma care decisions. Objective. To assess the associations between parental health literacy (HL), parental ability to use a written asthma management plan (WAMP), and child’s asthma control. Methods. Parents completed a survey with questions related to WAMPs and child’s asthma, a HL screening tool, and 5 asthma vignettes. For vignettes, parents identified asthma control zone and then made decisions about asthma management. WAMP scores were totaled (0-32) and converted to a percent correct score. Associations between parental HL, WAMP scores, child’s asthma control, and demographics were determined with independent t tests or 1-way analysis of variance, and chi-square tests. Variables significantly associated with WAMP scores or asthma control were included in multiple logistic regression or multiple linear regression analyses. Results. A total of 176 surveys were included; the mean ± SD WAMP score was 58.9% ± 22.2%, and 25% of respondents had limited HL. Of respondents’ children, 38% had not well/poorly controlled asthma. In multiple regression analysis controlling for education level, limited HL was significantly associated with WAMP score (b = 11.3, standard error 3.8, P = .004). WAMP score was not associated with asthma control. Limited HL was associated with poor asthma control in univariate analysis, but not in a logistic regression model controlling for other significant variables. Only unmarried marital status (adjusted odds ratio 4.4, 95% CI 1.8-10.8, P = .001) was associated with asthma control. Conclusion. HL is associated with parental ability to use WAMPs to respond to asthma scenarios. Parental HL may play a role in parents’ ability to appropriately use WAMPs. Keywords parental knowledge, health literacy, asthma management plan, asthma control
Introduction Pediatric asthma continues to be one of the most common chronic diseases of childhood. The Centers for Disease Control (CDC) reported that between 2008 and 2010, children aged 0 to 17 years had a higher prevalence of asthma (9.5%) than adults 18 years or older (7.7%).1 Researchers and policy makers have identified health literacy (HL) as a factor that may play a key role in managing chronic conditions, especially in underserved populations.2-5 Recent research has demonstrated that more specifically, limited or low HL is associated with worse health outcomes and less healthy behaviors.6-12 Both adult patients and parents of children with asthma
who have limited HL also have decreased disease knowledge, increased risk of exacerbations and hospitalizations, and report being more dissatisfied with the care and treatment given by their health care provider than those with adequate HL.4,7,13-15 1
Wright State University Boonshoft School of Medicine, Dayton, OH, USA 2 Tulane University School of Medicine, New Orleans, LA, USA Corresponding Author: Shalini G. Forbis, Division of General and Community Pediatrics, Wright State University Boonshoft School of Medicine, One Children’s Plaza, Dayton, OH 45404, USA. Email: [email protected]
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The National Heart, Lung, and Blood Institute (NHLBI) guidelines recommend the routine provision of written asthma management plans (WAMPs—documents that provide written instructions on how a patient/ caregiver should manage the patient’s asthma based on current asthma symptomatology).16 However, there are no data on the role that HL may play in the caregivers’ ability to correctly use WAMPs for their asthmatic child. This cross-sectional study assessed the relationships between parental HL, parental ability to use a WAMP, and child’s asthma control. We hypothesized that limited HL would be associated with both a decreased ability to correctly use a WAMP, and poorer control of asthma symptoms.
Patients and Methods Parents were recruited from 4 practice sites within a practice-based research network, Southwestern Ohio Ambulatory Research Network (SOAR-Net) (2 urban, 1 suburban, and 1 military pediatric clinic) and a pediatric pulmonary specialty clinic at a local children’s hospital from July 2009 through March 2010. Researchers recruited a convenience sample of 186 parents of children with asthma during normal office hours. Parents were approached by a member of the research team in the waiting room of the practice and screened for eligibility. Eligibility criteria included: child with asthma between the ages of 4 and 12 years, parent present and able to complete the survey in English, and completion of the survey during office visit. Children younger than 4 years were excluded to avoid inadvertently including younger children who may only have viral-induced wheezing. A consent letter was reviewed with parents during recruitment; verbal agreement to participate and completion of all survey components was considered consent to participate in the study. Each participant completed 3 survey components: an asthma vignette questionnaire with corresponding asthma management plan, a demographic questionnaire that included questions related to asthma severity and control, and the Newest Vital Sign (NVS), a measure of HL.17 On completion of the survey, parents received a $10 grocery gift card and no further contact was made with the respondents. The study was approved by institutional review boards at Wright State University, Wright Patterson Air Force Base, and Dayton Children’s Hospital.
Written Asthma Management Plan The WAMP provided to parents for this study used the traditional stoplight model (green, yellow, and red zone). The green zone represents good control and was prepopulated with a daily preventive regimen. The yellow
zone, “caution,” reflected an addition of albuterol sulfate inhalation every 4 hours. The red zone, “danger,” included instructions to take albuterol immediately, call the doctor, and to repeat the dose if needed. Each zone had a header in that zone color and included bullet points of symptoms that would be consistent with that zone. A blank (no medication instructions) version of the WAMP can be accessed at http://www.childrensdayton.org/cms/ resourcelibrary/files/ee0b329c92ab7bcc/asthmaactionplan3.pdf. Participants were given a completed version of the WAMP to use for completing the asthma vignettes.
Asthma Vignettes The questionnaire included 5 asthma vignettes written at approximately 3.9 grade reading level (by MS Word Flesch-Kincaid readability statistic). Vignette 1 is red zone and consists of a 14-year-old male with asthma who is playing a sport and develops fast breathing, and difficulty talking. Vignette 2, yellow zone, is an 18-year-old female who begins breathing heavily and is out of breath while playing guitar. In vignette 2 part 2, the 18-year-old takes medicine and falls asleep and then wakes up coughing and wheezing (yellow zone). In vignette 3, green zone, a 12-year-old girl runs in gym class, is able to keep up with classmates and is tired and out of breath similar to her healthy classmates. Vignette 4, red zone, involves an 8-year-old boy who is in a minor car accident. The child starts crying and then develops “hard breathing” and his nostrils get big with breaths (flare). For each vignette and part 2 of vignette 2, participants identify what zone the child is in (green/yellow/ red) and then identify appropriate management (1) wait for symptoms to resolve and do nothing else, (2) take preventive medicine, (3) take albuterol, (4) call doctor, and (5) call 911. Vignette 3 has an additional zone question and vignette 1 asks about returning the child to play (yes/no). Each of the 6 zone identifications and 26 management questions were scored 0 (not correct) or 1 (if answered correctly) for a total WAMP score of 0 to 32, which was converted to a 0% to 100% scale. Missing responses were counted as zero.
Asthma Severity and Control Asthma severity and control were classified based on the NHLBI Expert Panel Report 3: Guidelines for the Diagnosis and Management of Asthma, 2007 full report guidelines.17 Using parent report of medications, dosing and administration information, child asthma severity was classified into 1 of 6 steps (4 categories and 3 levels of control) of the stepwise approach for managing asthma in children. As outlined in the NHLBI, children were then assigned 1 of the following codes based on stepwise medication
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Brigham et al classifications: intermittent asthma (for those children on step 1 medications only), mild persistent asthma (step 2 medications), or moderate/severe persistent (children who were on steps 3-6 by medication criteria). Children who were between steps 2 and 3 were classified as mild persistent if a determination could not be made based on the information that was provided by the respondent. Four domains are used to determine asthma control based on the following questions: During the past 4 weeks, how many days did your child have daytime asthma symptoms? During the past 4 weeks, how many days did your child wake up during the night because of asthma? How many times does your child use a “quick relief inhaler (albuterol) in a week for relief of symptoms, not due to exercise? How often does cough, wheezing, or chest tightness limit play, sports, or other activities? Each domain was scored at 0 to 2 points each for a maximum score of 8. Scores of 0 to 1 were classified as well controlled, 2 to 4 not well controlled, and 5 or more were considered poorly controlled. Scores were then dichotomized into well-controlled (0-1) versus not well/poorly controlled (2-8) due to few participants’ children being poorly controlled.
Health Literacy Screening Tool Researchers administered the NVS, a 3-minute HL screening tool, validated against the Test of Functional Health Literacy in Adults.18 The NVS was created as a quick literacy screening tool that could be used by providers in their offices to evaluate HL. Using a nutritional label from a pint of ice cream, respondents are asked 6 questions that assess their quantitative, qualitative, and prose literacy skills. Per NVS instructions, researchers verbally read the 6 questions from the NVS screening tool to all parents and documented their responses on an answer sheet. All respondent answers were scored using the NVS scoring system and score sheet. Scores ranged from 0 to 6: scores of 0 to 1 were categorized as limited HL (50% or more likelihood of limited HL), 2 to 3 as possibility of limited HL, and 4 to 6 as adequate HL. Because of the small number of respondents scoring 0 to 1 in our study, scores were then dichotomized into limited/possibly limited (0-3) and adequate (4-6). Limited/ possibly limited scores are referred to as “limited HL” in the remainder of the article.
Demographic Variables Demographics of the parent included age, sex, race (white vs black/other), marital status (married vs not married), education level (≤high school vs >high school), employment status (full time vs part time, student, other), and whether the parent had ever used a WAMP to
manage their child’s asthma. Child demographics included age, age at diagnosis, sex, race, type of health insurance (private/private + public vs public only), and number of years with asthma. Clinic site was also included as an independent variable.
Data Analysis The primary outcomes for the study were the total scores on the WAMP and child’s asthma control. Associations between asthma control and WAMP scores, and between categorical independent variables and WAMP scores were determined using 2-sample t tests. Simple linear regression was used to assess the associations between continuous independent variables and WAMP scores. All variables that were significantly associated with WAMP scores (P ≤ .05) in univariate analyses were then included in a final multiple regression model predicting WAMP score. Associations between independent variables and asthma control (well controlled vs not well controlled) were assessed with chi-square tests for categorical variables and 2-sample t tests or 1-way analysis of variance for continuous variables. Variables significantly associated with asthma control in univariate analyses were then included in a logistic regression model predicting asthma control. Adjusted odds ratios (AORs) with 95% confidence intervals (CIs) were determined for each independent variable after controlling for all other significant independent variables. Surveys were included in the study if they had completed responses for the NVS, asthma control, and WAMP score, and were missing 5 or fewer responses to other survey questions. Categorical descriptive data are presented as frequencies and percentages of nonmissing responses, and continuous data are presented as mean ± SD (n). Data analyses were completed using IBM SPSS Statistics version 21.0 (IBM Corporation).
Results A total of 186 surveys from parents of children with asthma were returned. Of these, 10 (5%) were missing data on child asthma control and were excluded, resulting in a sample size of 176 parent-child dyads. The number of surveys from each site ranged from 28 to 60. Overall, the total WAMP score was 58.9 ± 22.2, and ranged from 12.5 to 100. Thirty-eight percent of the children had asthma that was not well controlled. WAMP scores were not different for parents of children with well-controlled versus not well controlled asthma (59.2 ± 22.6 vs 58.6 ± 21.7, P = .864). The mean age of parents was 34.5 ± 7.3 years (n = 167); mean age for the children was 7.6 ± 2.3 years (n = 167). For 147 responses to the number of years the child had asthma, the mean
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Table 1. Written Asthma Management Plan (WAMP) Total Scores by Parent and Child Characteristics. Variable Parent characteristics Adequate health literacy Yes No Has past or current WAMP (n = 173) Yes No Sex (n = 175) Male Female Race White Black/other Marital status (n = 173) Married Not married Employment (n = 167) Full time All others Education (n = 175) >High school ≤High school Child characteristics Asthma severity (n = 165) Intermittent Mild Moderate/severe Sex (n = 173) Male Female Race White Black/other Insurance (n = 172) Private/private + public Public
n (%)
WAMP Score, mean ± SD
P Value
132 (75) 44 (25)
62.1 ± 21.7 49.4 ± 21.1
.001
124 (72) 49 (28)
59.0 ± 21.8 59.5 ± 23.5
.888
29 (17) 146 (83)
53.3 ± 21.6 60.2 ± 22.2
.126
113 (64) 63 (36)
60.3 ± 22.7 56.5 ± 22.0
.275
105 (61) 68 (39)
60.8 ± 22.8 56.6 ± 20.8
.222
76 (46) 91 (54)
58.4 ± 22.7 58.8 ± 21.7
.918
125 (71) 50 (29)
61.4 ± 22.6 52.7 ± 20.2
.018
52 (31) for peer review 46 (28) 67 (41)
60.3 ± 22.2 57.2 ± 20.4 60.9 ± 23.1
.664
92 (53) 81 (47)
59.9 ± 22.7 57.8 ± 21.7
.552
99 (56) 77 (44)
60.2 ± 22.7 57.3 ± 21.5
.399
91 (47) 81 (53)
61.1 ± 22.9 57.3 ± 21.6
.270
a
Sample sizes for each comparison may not total to 176 because of missing data for some variables.
was 4.5 ± 2.9, with a mean age of 3.3 ± 2.8 years at diagnosis (n = 141). Site, parent age, child age, age at diagnosis, and number of years with asthma were not associated with WAMP scores or asthma control. Frequencies and percentages for categorical parent and child characteristics, and their associations with WAMP scores are shown in Table 1. Limited HL (P < .001) and education ≤high school (P = .017) were significantly associated with lower WAMP scores. No other categorical variables were associated with WAMP scores. When HL and parent education level were entered into a multiple linear regression analysis, only HL remained significantly associated with WAMP score
(b = 11.3, standard error = 3.8, P = .004 for HL; b = 6.4, standard error = 3.7, P = .085 for parent education). Table 2 shows the associations between categorical parent and child characteristics and asthma control. Parent factors associated with not well/poor asthma control in univariate analyses were limited HL (P = .003), black/other race (P = .050), not being married (P < .001), and education ≤high school (P = .018). Public health insurance for the child was also associated with poor control (P = .002). The results of multiple logistic regression analysis for association of not well/poor asthma control are shown in Table 3 (n = 169). The independent variables included parent HL, education, race,
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Brigham et al Table 2. Comparisons Between Well-Controlled and Not Well-Controlled Asthma by Parent and Child Characteristics.a Variable Parent characteristics Adequate health literacy Yes No Sex (n = 175) Male Female Race White Black/other Marital status (n = 173) Married Not married Employment (n = 167) Full time All others (part time, student, etc) Education (n = 175) >High school ≤High school Child characteristics Asthma severity (n=165) Intermittent Mild Moderate/severe Sex (n = 173) Male Female Race White Black/other Insurance (n = 172) Private/private + public Public
Child’s Asthma Well Controlled (n = 109); n (%)
Child’s Asthma Not Well/Poorly Controlled (n = 67); n (%)
P Value
90 (83) 19 (17)
42 (63) 25 (37)
.003
22 (20) 87 (80)
7 (11) 59 (89)
.099
76 (70) 33 (30)
37 (55) 30 (45)
.050
79 (74) 28 (26)
26 (39) 40 (61)
high school) Black/other race (reference = White) Not married (reference = married) Public insurance (reference = private/private + public)
care, or decreased self-efficacy has been indirectly linked to limited HL and lower educational attainment.15,19-21 These factors could provide possible explanations for the finding in this study that individuals with low HL had lower WAMP scores than those with adequate HL. Limited literacy parents of children with asthma may disproportionately rely on health care providers or other individuals to assist them in making decisions for their child’s asthma rather than using written materials such as written asthma plans or educational handouts. This study did not ascertain whether or not this is the case. Potentially, if future research determines that adults with limited literacy rely on health care providers for decision making about asthma, this could be an explanatory factor for higher health services utilization in this population. Parent HL status was not a predictor of asthma control in this sample. Parent marital status was associated with child’s asthma control; unmarried parents were more likely to have a child whose asthma was not well controlled. This may indicate that there are factors (not measured in this study) that are associated with marital status that may overcome HL related barriers. For example, factors such as competing demands on a parent’s time and/or decreased social support for unmarried parents may play a role in worse asthma symptom control in this sample.22-27 Flores et al28 observed that full-time employment status was associated with worse asthma outcomes. They also found that children with asthma who live in poverty have twice the number of asthma exacerbations per year than those children with asthma not living in poverty. In our sample, parental employment status was not associated with asthma control.
Limitations Limitations of this study included completion of surveys by parents. Research assistants were available for questions however this may have led to a potentially higher literacy sample participating in the study. Asthma status was assessed by parent report, which may involve some recall bias (ie, parental recall of child’s asthma symptoms and medication regimen). Asthma severity was classified based on the medication regimen reported by the parent.
AOR (95% CI)
P Value
2.0 (0.9-4.4) 1.6 (0.7-3.4) 1.5 (0.6-3.4) 4.4 (1.8-10.8) 1.2 (0.5-2.7)
.080 .253 .397 .001 .675
The authors cannot be sure that parents actually used the WAMP when completing the vignettes. Parents may have completed the vignettes based on previous experiences with their child’s asthma. Anecdotally, research assistants reported not always seeing parents using the provided asthma management plan to answer vignette questions. Finally, this study created an artificial setting where parents were asked to respond to written scenarios. The assessment of asthma typically uses visual and auditory cues. These were translated to written information, which may have created an additional barrier for parents with limited literacy. This was an exploratory study of the relationship between HL and use of asthma management plans. This study provides initial insight into the impact of caregivers’ HL on ability to use WAMPs and can inform further research in this area. The next step would be an in-depth exploration of factors that influence parents’ decision making both on a daily basis and also during asthma exacerbations. Future studies would be greatly strengthened by using either videotaped patients and/or orally administered surveys. These data would assist researchers, asthma educators, and clinicians in designing effective asthma education programs for parents of children with asthma.
Conclusion In this study, parental HL was associated with ability to use a WAMP. However, parental HL was not associated with child asthma control in multivariate analyses. This study suggests that provision of WAMPs may not be of utility for low HL parents. Further research is needed to determine if using appropriate educational and HL techniques in the office setting could aid parents in understanding and using these written materials more effectively to care for their children’s asthma. Authors’ Note The views and opinions expressed in this article/presentation are those of the author(s) and do not reflect official policy or position of the US Air Force, US Department of Defense, or US Government.
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Brigham et al Author Contributions ELB was involved with study design and data collection, completed initial draft and approved the final submitted manuscript. LEG designed the study, data collection instruments, critically reviewed drafts and approved the final submitted manuscript. AS was involved with study development, completed data analyses, reviewed/revised drafts and approved the final manuscript. GAM was involved with initial study design, oversaw data collection at one site, critically reviewed and approved the final submitted manuscript. SGF conceptualized the study, participated in study design, reviewed/revised and approved the final manuscript.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
References 1. Centers for Disease Control and Prevention. Vital signs: asthma prevalence, disease characteristics, and self-management education—United States, 2001-2009. MMWR Morb Mortal Wkly Rep. 2011;60(17):547-552. 2. Paasche-Orlow MK, Riekert KA, Bilderback A, Hill P, Rand CS, Brancati FL, Krishnan JA. Tailored education may reduce health literacy disparities in asthma self-management. Am J Respir Crit Care Med. 2005;172:980-986. 3. Yin HS, Johnson M, Mendelsohn AL, Abrams MA, Sanders LM, Dreyer BP. The health literacy of parents in the United States: a nationally representative study. Pediatrics. 2009;124(suppl 3):S289-S298. 4. Saha S. Improving literacy as a means to reducing health disparities. J Gen Intern Med. 2006;21:893-895. 5. Williams MV, Baker DW, Honig EG, Lee TM, Nowlan A. Inadequate literacy is a barrier to asthma knowledge and self-care. Chest. 1998;114:1008-1015. 6. Sentell TL, Halpin HA. Importance of adult literacy in understanding health disparities. J Gen Intern Med. 2006;21:862-866. 7. Gazmararian JA, Williams MV, Peel J, Baker DW. Health literacy and knowledge of chronic disease. Patient Educ Couns. 2003;51:267-275. 8. DeWalt DA, Dilling MH, Rosenthal MS, Pignone MP. Low parental literacy is associated with worse asthma care measures in children. Ambul Pediatr. 2007;7:25-31. 9. Howard DH, Sentell T, Gazmararian JA. Impact of health literacy on socioeconomic and racial differences in health in an elderly population. J Gen Intern Med. 2006;21:857-861. 10. Mancuso CA, Rincon M. Asthma patients’ assessments of health care and medical decision making: the role of health literacy. J Asthma. 2006;43:41-44. 11. Mancuso CA, Rincon M. Impact of health literacy on longitudinal asthma outcomes. J Gen Intern Med. 2006;21:813-817.
12. Adams RJ, Appleton SL, Hill CL, Ruffin RE, Wilson DH. Inadequate health literacy is associated with increased asthma morbidity in a population sample. J Allergy Clin Immunol. 2009;124:601-603. 13. Canino G, McQuaid EL, Rand CS. Addressing asthma health disparities: a multilevel challenge. J Allergy Clin Immunol. 2009;123:1209-1217. 14. Schatz M, Cook EF, Joshua A, Petitti D. Risk factors for asthma hospitalizations in a managed care organization: development of a clinical prediction rule. Am J Manag Care. 2003;9:538-547. 15. Robinson LD, Calmes DP, Bazargan M. The impact of literacy enhancement on asthma-related outcomes among underserved children. J Natl Med Assoc. 2008;100: 892-896. 16. Cabana MD, Chaffin DC, Jarlsberg LG, Thyne SM, Clark NM. Selective provision of asthma self-management tools to families. Pediatrics. 2008;121:900-905. 17. National Heart, Lung and Blood Institute. Expert Panel Report 3: guidelines for the diagnosis and management of asthma. http://www.nhlbi.nih.gov/guidelines/asthma/asthgdln.pdf. Published August 28, 2007. Accessed May 16, 2011. 18. Weiss BD, Mays MZ, Martz W, et al. Quick assessment of literacy in primary care: the newest vital sign. Ann Fam Med. 2005;3:514-522. 19. Wood MR, Price JH, Dake JA, Telljohann SK, Khuder SA. African American parents’/guardians’ health literacy and self-efficacy and their child’s level of asthma control. J Pediatr Nurs. 2010;25:418-427. 20. Masini DE, Krishnaswamy G. The challenge of improving the health care literacy of the asthma community. Respir Care. 2008;53:1665-1666. 21. Shone LP, Conn KM, Sanders L, Halterman JS. The role of parent health literacy among urban children with persistent asthma. Patient Educ Couns. 2009;75:368-375. 22. DiMatteo MR. Social support and patient adherence to medical treatment: a meta-analysis. Health Psychol. 2004;23:207-218. 23. Horne R, Price D, Cleland J, et al. Can asthma control be improved by understanding the patient’s perspective? BMC Pulm Med. 2007;7:8. 24. Kaugars AS, Klinnert MD, Bender BG. Family influences on pediatric asthma. J Pediatr Psychol. 2004;29:475-491. 25. Koenig K. Pilot study of low income parents’ perspectives on managing asthma in high-risk infants and toddlers. Pediatr Nurs. 2007;33:223-242. 26. Brown RT, Wiener L, Kupst MJ, et al. Single parents of children with chronic illness: an understudied phenomenon. J Pediatr Psychol. 2008;33:408-421. 27. Shalowitz M, Mijanovich T, Berry C, Clark-Kauffman E, Quinn K, Perez E. Context matters: a community-based study of maternal mental health, life stressors, social support, and children’s asthma. Pediatrics. 2006;117:e940. 28. Flores G, Snowden-Bridon C, Torres S, et al. Urban minority children with asthma: substantial morbidity, compromised quality and access to specialists, and the importance of poverty in specialty care. J Asthma. 2009;46:392-398.
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research-article2015
CPJXXX10.1177/0009922815587089Clinical PediatricsBrigham et al
Article
Associations Between Parental Health Literacy, Use of Asthma Management Plans, and Child’s Asthma Control
Clinical Pediatrics 1–7 © The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0009922815587089 cpj.sagepub.com
Erin L. Brigham, MPH1, Larry Goldenberg, MD, MBA2, Adrienne Stolfi, MSPH1, Gary A. Mueller, MD1, and Shalini G. Forbis, MD, MPH1
Abstract Background. There are some studies demonstrating the effectiveness of the provision of written asthma action plans in improving asthma outcomes. There exist little data on the ability of parents to use these plans to make asthma care decisions. Objective. To assess the associations between parental health literacy (HL), parental ability to use a written asthma management plan (WAMP), and child’s asthma control. Methods. Parents completed a survey with questions related to WAMPs and child’s asthma, a HL screening tool, and 5 asthma vignettes. For vignettes, parents identified asthma control zone and then made decisions about asthma management. WAMP scores were totaled (0-32) and converted to a percent correct score. Associations between parental HL, WAMP scores, child’s asthma control, and demographics were determined with independent t tests or 1-way analysis of variance, and chi-square tests. Variables significantly associated with WAMP scores or asthma control were included in multiple logistic regression or multiple linear regression analyses. Results. A total of 176 surveys were included; the mean ± SD WAMP score was 58.9% ± 22.2%, and 25% of respondents had limited HL. Of respondents’ children, 38% had not well/poorly controlled asthma. In multiple regression analysis controlling for education level, limited HL was significantly associated with WAMP score (b = 11.3, standard error 3.8, P = .004). WAMP score was not associated with asthma control. Limited HL was associated with poor asthma control in univariate analysis, but not in a logistic regression model controlling for other significant variables. Only unmarried marital status (adjusted odds ratio 4.4, 95% CI 1.8-10.8, P = .001) was associated with asthma control. Conclusion. HL is associated with parental ability to use WAMPs to respond to asthma scenarios. Parental HL may play a role in parents’ ability to appropriately use WAMPs. Keywords parental knowledge, health literacy, asthma management plan, asthma control
Introduction Pediatric asthma continues to be one of the most common chronic diseases of childhood. The Centers for Disease Control (CDC) reported that between 2008 and 2010, children aged 0 to 17 years had a higher prevalence of asthma (9.5%) than adults 18 years or older (7.7%).1 Researchers and policy makers have identified health literacy (HL) as a factor that may play a key role in managing chronic conditions, especially in underserved populations.2-5 Recent research has demonstrated that more specifically, limited or low HL is associated with worse health outcomes and less healthy behaviors.6-12 Both adult patients and parents of children with asthma
who have limited HL also have decreased disease knowledge, increased risk of exacerbations and hospitalizations, and report being more dissatisfied with the care and treatment given by their health care provider than those with adequate HL.4,7,13-15 1
Wright State University Boonshoft School of Medicine, Dayton, OH, USA 2 Tulane University School of Medicine, New Orleans, LA, USA Corresponding Author: Shalini G. Forbis, Division of General and Community Pediatrics, Wright State University Boonshoft School of Medicine, One Children’s Plaza, Dayton, OH 45404, USA. Email: [email protected]
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Clinical Pediatrics
The National Heart, Lung, and Blood Institute (NHLBI) guidelines recommend the routine provision of written asthma management plans (WAMPs—documents that provide written instructions on how a patient/ caregiver should manage the patient’s asthma based on current asthma symptomatology).16 However, there are no data on the role that HL may play in the caregivers’ ability to correctly use WAMPs for their asthmatic child. This cross-sectional study assessed the relationships between parental HL, parental ability to use a WAMP, and child’s asthma control. We hypothesized that limited HL would be associated with both a decreased ability to correctly use a WAMP, and poorer control of asthma symptoms.
Patients and Methods Parents were recruited from 4 practice sites within a practice-based research network, Southwestern Ohio Ambulatory Research Network (SOAR-Net) (2 urban, 1 suburban, and 1 military pediatric clinic) and a pediatric pulmonary specialty clinic at a local children’s hospital from July 2009 through March 2010. Researchers recruited a convenience sample of 186 parents of children with asthma during normal office hours. Parents were approached by a member of the research team in the waiting room of the practice and screened for eligibility. Eligibility criteria included: child with asthma between the ages of 4 and 12 years, parent present and able to complete the survey in English, and completion of the survey during office visit. Children younger than 4 years were excluded to avoid inadvertently including younger children who may only have viral-induced wheezing. A consent letter was reviewed with parents during recruitment; verbal agreement to participate and completion of all survey components was considered consent to participate in the study. Each participant completed 3 survey components: an asthma vignette questionnaire with corresponding asthma management plan, a demographic questionnaire that included questions related to asthma severity and control, and the Newest Vital Sign (NVS), a measure of HL.17 On completion of the survey, parents received a $10 grocery gift card and no further contact was made with the respondents. The study was approved by institutional review boards at Wright State University, Wright Patterson Air Force Base, and Dayton Children’s Hospital.
Written Asthma Management Plan The WAMP provided to parents for this study used the traditional stoplight model (green, yellow, and red zone). The green zone represents good control and was prepopulated with a daily preventive regimen. The yellow
zone, “caution,” reflected an addition of albuterol sulfate inhalation every 4 hours. The red zone, “danger,” included instructions to take albuterol immediately, call the doctor, and to repeat the dose if needed. Each zone had a header in that zone color and included bullet points of symptoms that would be consistent with that zone. A blank (no medication instructions) version of the WAMP can be accessed at http://www.childrensdayton.org/cms/ resourcelibrary/files/ee0b329c92ab7bcc/asthmaactionplan3.pdf. Participants were given a completed version of the WAMP to use for completing the asthma vignettes.
Asthma Vignettes The questionnaire included 5 asthma vignettes written at approximately 3.9 grade reading level (by MS Word Flesch-Kincaid readability statistic). Vignette 1 is red zone and consists of a 14-year-old male with asthma who is playing a sport and develops fast breathing, and difficulty talking. Vignette 2, yellow zone, is an 18-year-old female who begins breathing heavily and is out of breath while playing guitar. In vignette 2 part 2, the 18-year-old takes medicine and falls asleep and then wakes up coughing and wheezing (yellow zone). In vignette 3, green zone, a 12-year-old girl runs in gym class, is able to keep up with classmates and is tired and out of breath similar to her healthy classmates. Vignette 4, red zone, involves an 8-year-old boy who is in a minor car accident. The child starts crying and then develops “hard breathing” and his nostrils get big with breaths (flare). For each vignette and part 2 of vignette 2, participants identify what zone the child is in (green/yellow/ red) and then identify appropriate management (1) wait for symptoms to resolve and do nothing else, (2) take preventive medicine, (3) take albuterol, (4) call doctor, and (5) call 911. Vignette 3 has an additional zone question and vignette 1 asks about returning the child to play (yes/no). Each of the 6 zone identifications and 26 management questions were scored 0 (not correct) or 1 (if answered correctly) for a total WAMP score of 0 to 32, which was converted to a 0% to 100% scale. Missing responses were counted as zero.
Asthma Severity and Control Asthma severity and control were classified based on the NHLBI Expert Panel Report 3: Guidelines for the Diagnosis and Management of Asthma, 2007 full report guidelines.17 Using parent report of medications, dosing and administration information, child asthma severity was classified into 1 of 6 steps (4 categories and 3 levels of control) of the stepwise approach for managing asthma in children. As outlined in the NHLBI, children were then assigned 1 of the following codes based on stepwise medication
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Brigham et al classifications: intermittent asthma (for those children on step 1 medications only), mild persistent asthma (step 2 medications), or moderate/severe persistent (children who were on steps 3-6 by medication criteria). Children who were between steps 2 and 3 were classified as mild persistent if a determination could not be made based on the information that was provided by the respondent. Four domains are used to determine asthma control based on the following questions: During the past 4 weeks, how many days did your child have daytime asthma symptoms? During the past 4 weeks, how many days did your child wake up during the night because of asthma? How many times does your child use a “quick relief inhaler (albuterol) in a week for relief of symptoms, not due to exercise? How often does cough, wheezing, or chest tightness limit play, sports, or other activities? Each domain was scored at 0 to 2 points each for a maximum score of 8. Scores of 0 to 1 were classified as well controlled, 2 to 4 not well controlled, and 5 or more were considered poorly controlled. Scores were then dichotomized into well-controlled (0-1) versus not well/poorly controlled (2-8) due to few participants’ children being poorly controlled.
Health Literacy Screening Tool Researchers administered the NVS, a 3-minute HL screening tool, validated against the Test of Functional Health Literacy in Adults.18 The NVS was created as a quick literacy screening tool that could be used by providers in their offices to evaluate HL. Using a nutritional label from a pint of ice cream, respondents are asked 6 questions that assess their quantitative, qualitative, and prose literacy skills. Per NVS instructions, researchers verbally read the 6 questions from the NVS screening tool to all parents and documented their responses on an answer sheet. All respondent answers were scored using the NVS scoring system and score sheet. Scores ranged from 0 to 6: scores of 0 to 1 were categorized as limited HL (50% or more likelihood of limited HL), 2 to 3 as possibility of limited HL, and 4 to 6 as adequate HL. Because of the small number of respondents scoring 0 to 1 in our study, scores were then dichotomized into limited/possibly limited (0-3) and adequate (4-6). Limited/ possibly limited scores are referred to as “limited HL” in the remainder of the article.
Demographic Variables Demographics of the parent included age, sex, race (white vs black/other), marital status (married vs not married), education level (≤high school vs >high school), employment status (full time vs part time, student, other), and whether the parent had ever used a WAMP to
manage their child’s asthma. Child demographics included age, age at diagnosis, sex, race, type of health insurance (private/private + public vs public only), and number of years with asthma. Clinic site was also included as an independent variable.
Data Analysis The primary outcomes for the study were the total scores on the WAMP and child’s asthma control. Associations between asthma control and WAMP scores, and between categorical independent variables and WAMP scores were determined using 2-sample t tests. Simple linear regression was used to assess the associations between continuous independent variables and WAMP scores. All variables that were significantly associated with WAMP scores (P ≤ .05) in univariate analyses were then included in a final multiple regression model predicting WAMP score. Associations between independent variables and asthma control (well controlled vs not well controlled) were assessed with chi-square tests for categorical variables and 2-sample t tests or 1-way analysis of variance for continuous variables. Variables significantly associated with asthma control in univariate analyses were then included in a logistic regression model predicting asthma control. Adjusted odds ratios (AORs) with 95% confidence intervals (CIs) were determined for each independent variable after controlling for all other significant independent variables. Surveys were included in the study if they had completed responses for the NVS, asthma control, and WAMP score, and were missing 5 or fewer responses to other survey questions. Categorical descriptive data are presented as frequencies and percentages of nonmissing responses, and continuous data are presented as mean ± SD (n). Data analyses were completed using IBM SPSS Statistics version 21.0 (IBM Corporation).
Results A total of 186 surveys from parents of children with asthma were returned. Of these, 10 (5%) were missing data on child asthma control and were excluded, resulting in a sample size of 176 parent-child dyads. The number of surveys from each site ranged from 28 to 60. Overall, the total WAMP score was 58.9 ± 22.2, and ranged from 12.5 to 100. Thirty-eight percent of the children had asthma that was not well controlled. WAMP scores were not different for parents of children with well-controlled versus not well controlled asthma (59.2 ± 22.6 vs 58.6 ± 21.7, P = .864). The mean age of parents was 34.5 ± 7.3 years (n = 167); mean age for the children was 7.6 ± 2.3 years (n = 167). For 147 responses to the number of years the child had asthma, the mean
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Clinical Pediatrics
Table 1. Written Asthma Management Plan (WAMP) Total Scores by Parent and Child Characteristics. Variable Parent characteristics Adequate health literacy Yes No Has past or current WAMP (n = 173) Yes No Sex (n = 175) Male Female Race White Black/other Marital status (n = 173) Married Not married Employment (n = 167) Full time All others Education (n = 175) >High school ≤High school Child characteristics Asthma severity (n = 165) Intermittent Mild Moderate/severe Sex (n = 173) Male Female Race White Black/other Insurance (n = 172) Private/private + public Public
n (%)
WAMP Score, mean ± SD
P Value
132 (75) 44 (25)
62.1 ± 21.7 49.4 ± 21.1
.001
124 (72) 49 (28)
59.0 ± 21.8 59.5 ± 23.5
.888
29 (17) 146 (83)
53.3 ± 21.6 60.2 ± 22.2
.126
113 (64) 63 (36)
60.3 ± 22.7 56.5 ± 22.0
.275
105 (61) 68 (39)
60.8 ± 22.8 56.6 ± 20.8
.222
76 (46) 91 (54)
58.4 ± 22.7 58.8 ± 21.7
.918
125 (71) 50 (29)
61.4 ± 22.6 52.7 ± 20.2
.018
52 (31) for peer review 46 (28) 67 (41)
60.3 ± 22.2 57.2 ± 20.4 60.9 ± 23.1
.664
92 (53) 81 (47)
59.9 ± 22.7 57.8 ± 21.7
.552
99 (56) 77 (44)
60.2 ± 22.7 57.3 ± 21.5
.399
91 (47) 81 (53)
61.1 ± 22.9 57.3 ± 21.6
.270
a
Sample sizes for each comparison may not total to 176 because of missing data for some variables.
was 4.5 ± 2.9, with a mean age of 3.3 ± 2.8 years at diagnosis (n = 141). Site, parent age, child age, age at diagnosis, and number of years with asthma were not associated with WAMP scores or asthma control. Frequencies and percentages for categorical parent and child characteristics, and their associations with WAMP scores are shown in Table 1. Limited HL (P < .001) and education ≤high school (P = .017) were significantly associated with lower WAMP scores. No other categorical variables were associated with WAMP scores. When HL and parent education level were entered into a multiple linear regression analysis, only HL remained significantly associated with WAMP score
(b = 11.3, standard error = 3.8, P = .004 for HL; b = 6.4, standard error = 3.7, P = .085 for parent education). Table 2 shows the associations between categorical parent and child characteristics and asthma control. Parent factors associated with not well/poor asthma control in univariate analyses were limited HL (P = .003), black/other race (P = .050), not being married (P < .001), and education ≤high school (P = .018). Public health insurance for the child was also associated with poor control (P = .002). The results of multiple logistic regression analysis for association of not well/poor asthma control are shown in Table 3 (n = 169). The independent variables included parent HL, education, race,
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Brigham et al Table 2. Comparisons Between Well-Controlled and Not Well-Controlled Asthma by Parent and Child Characteristics.a Variable Parent characteristics Adequate health literacy Yes No Sex (n = 175) Male Female Race White Black/other Marital status (n = 173) Married Not married Employment (n = 167) Full time All others (part time, student, etc) Education (n = 175) >High school ≤High school Child characteristics Asthma severity (n=165) Intermittent Mild Moderate/severe Sex (n = 173) Male Female Race White Black/other Insurance (n = 172) Private/private + public Public
Child’s Asthma Well Controlled (n = 109); n (%)
Child’s Asthma Not Well/Poorly Controlled (n = 67); n (%)
P Value
90 (83) 19 (17)
42 (63) 25 (37)
.003
22 (20) 87 (80)
7 (11) 59 (89)
.099
76 (70) 33 (30)
37 (55) 30 (45)
.050
79 (74) 28 (26)
26 (39) 40 (61)
high school) Black/other race (reference = White) Not married (reference = married) Public insurance (reference = private/private + public)
care, or decreased self-efficacy has been indirectly linked to limited HL and lower educational attainment.15,19-21 These factors could provide possible explanations for the finding in this study that individuals with low HL had lower WAMP scores than those with adequate HL. Limited literacy parents of children with asthma may disproportionately rely on health care providers or other individuals to assist them in making decisions for their child’s asthma rather than using written materials such as written asthma plans or educational handouts. This study did not ascertain whether or not this is the case. Potentially, if future research determines that adults with limited literacy rely on health care providers for decision making about asthma, this could be an explanatory factor for higher health services utilization in this population. Parent HL status was not a predictor of asthma control in this sample. Parent marital status was associated with child’s asthma control; unmarried parents were more likely to have a child whose asthma was not well controlled. This may indicate that there are factors (not measured in this study) that are associated with marital status that may overcome HL related barriers. For example, factors such as competing demands on a parent’s time and/or decreased social support for unmarried parents may play a role in worse asthma symptom control in this sample.22-27 Flores et al28 observed that full-time employment status was associated with worse asthma outcomes. They also found that children with asthma who live in poverty have twice the number of asthma exacerbations per year than those children with asthma not living in poverty. In our sample, parental employment status was not associated with asthma control.
Limitations Limitations of this study included completion of surveys by parents. Research assistants were available for questions however this may have led to a potentially higher literacy sample participating in the study. Asthma status was assessed by parent report, which may involve some recall bias (ie, parental recall of child’s asthma symptoms and medication regimen). Asthma severity was classified based on the medication regimen reported by the parent.
AOR (95% CI)
P Value
2.0 (0.9-4.4) 1.6 (0.7-3.4) 1.5 (0.6-3.4) 4.4 (1.8-10.8) 1.2 (0.5-2.7)
.080 .253 .397 .001 .675
The authors cannot be sure that parents actually used the WAMP when completing the vignettes. Parents may have completed the vignettes based on previous experiences with their child’s asthma. Anecdotally, research assistants reported not always seeing parents using the provided asthma management plan to answer vignette questions. Finally, this study created an artificial setting where parents were asked to respond to written scenarios. The assessment of asthma typically uses visual and auditory cues. These were translated to written information, which may have created an additional barrier for parents with limited literacy. This was an exploratory study of the relationship between HL and use of asthma management plans. This study provides initial insight into the impact of caregivers’ HL on ability to use WAMPs and can inform further research in this area. The next step would be an in-depth exploration of factors that influence parents’ decision making both on a daily basis and also during asthma exacerbations. Future studies would be greatly strengthened by using either videotaped patients and/or orally administered surveys. These data would assist researchers, asthma educators, and clinicians in designing effective asthma education programs for parents of children with asthma.
Conclusion In this study, parental HL was associated with ability to use a WAMP. However, parental HL was not associated with child asthma control in multivariate analyses. This study suggests that provision of WAMPs may not be of utility for low HL parents. Further research is needed to determine if using appropriate educational and HL techniques in the office setting could aid parents in understanding and using these written materials more effectively to care for their children’s asthma. Authors’ Note The views and opinions expressed in this article/presentation are those of the author(s) and do not reflect official policy or position of the US Air Force, US Department of Defense, or US Government.
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Brigham et al Author Contributions ELB was involved with study design and data collection, completed initial draft and approved the final submitted manuscript. LEG designed the study, data collection instruments, critically reviewed drafts and approved the final submitted manuscript. AS was involved with study development, completed data analyses, reviewed/revised drafts and approved the final manuscript. GAM was involved with initial study design, oversaw data collection at one site, critically reviewed and approved the final submitted manuscript. SGF conceptualized the study, participated in study design, reviewed/revised and approved the final manuscript.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
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