Measuring Disease Burden:Asthma caregiver quality of lifeAna KobayashiMaternal and Child Health ProgramJune 7, 2006

BackgroundAsthma is a major public health problem facing children and families.

Asthma is a common chronic childhood illness, leading to 14 million missed school days each year.

Childrens asthma also affects the well - being of parents and caregivers.(National Center for Environmental Health of the Centers of Disease Control and Prevention, 2005) (Institute of Medicine, 2000)

Asthma Caregiver Quality of LifeThe Pediatric Asthma Caregiver Quality of Life Questionnaire (PACQLQ) measures how a childs asthma affects caregivers.

13 item questionnaire asking caregivers about their activities and feelings.(Juniper et al., 1996b)

Literature ReviewPatient QOL studies find that AQLQ scores are related to:Asthma severityEnvironmental tobacco smoke (ETS)Education and incomeFemale gender (inconsistently)Hispanic race/ethnicity (Leidy et al., 1998a, Leidy et al., 1998b;Eisner et al, 2002;Sippel et al., 1999) (Adams et al., 2004; Apter et al, 1999; von Rueden et al., 2006)

Literature ReviewFew studies have investigated predictors of caregiver QOL, and indicate caregiver QOL is associated with:

Child symptom free days and symptom frequencyCaregivers perception of disease controlUse of maintenance medicationSmoking householdHispanic ethnicity(Halterman et al., 2004; Levy et al., 2004)

Study ObjectiveTo evaluate relationships between caregiver QOL and health utilization, asthma management, and other variables in a community sample.

Setting: Clean Air for KidsClean Air for Kids Partnership (CAFK) is a program designed to help caregivers of children with asthma learn how to manage asthma at home and how to reduce environmental exposures.

Caregivers of children with asthma who live in Pierce County, Washington reach the program through community-, physician-, school-, and self - referral.

(Primomo, Johnston, DiBiase, Nodolf & Noren, 2006)

MethodsSecondary data analysis

Data was collected during CAFK program evaluation, consisting of baseline caregiver survey responses.

Linear regression was used to evaluate associations between independent and outcome variables and to generate three linear regression models.

ResultsFound:Associations between independent variables and PACQLQ, Emotional function, and Activity limitation scores.

Three stepwise linear regression models for each: PACQLQ, Emotional function, and Activity limitation scores.

Results

PACQLQ ScoreEmotional Function ScoreActivity Limitation ScorePerceived Asthma SeverityMissed School DaysER visitsCaregiver EducationPerceived Asthma SeverityMissed School DaysER visitsCaregiver EducationPerceived Asthma SeverityMissed School DaysER VisitsChild Age

Table 3: Stepwise regression models predicting baseline PACQLQ scores.

Quality of Life Summary Score ()

Emotional Function Subscale score ()

Activity Limitation subscale score ()

Model 1

Perceived asthma severity

- 0.48*

- 0.42*

- 0.61**

Overall Model R2

0.05*

0.05*

0.07**

Model 2

Perceived asthma severity

- 0.30

- 0.26

- 0.37

ER Visits

- 0.12**

- 0.10

- 0.16**

Overall Model R2

0.13**

0.10**

0.15***

Model 3

Perceived asthma severity

- 0.29

- 0.26

- 0.37

ER visits

- 0.12**

- 0.99*

- 0.16**

Caregiver education

0.34**

0.38

Not included

Overall Model R2

0.19**

0.17***

0.15***

* = p < 0.05

** = p < 0.01

*** = p < 0.001

Implications for practiceInterventions proven to reduce emergency health services utilization should be used to support increased caregiver quality of life.

Future studies should further investigate relationships between demographic characteristics of families and caregiver quality of life.

AcknowledgementsClean Air for Kids PartnershipJanet Primomo RN, PhD.Marcia Williams PhD., MPH.

Supported in part by Project #T76 MC 00011 from the Maternal and Child Health Bureau (Title V, Social Security Act),Health Resources and Services Administration,U.S. Department of Health and Human Services.

ReferencesAdams R.J., Wilson D., Smith B.J., & Ruffin R.E. (2004) Impact of coping and socioeconomic factors on quality of life in adults with asthma. Respirology 9: 87-95.Adams R.J., Appleton S., Wilson D.H., & Ruffin R.E. (2005) Participatory decision making, asthma action plans, and use of asthma medication: A population survey. Journal of Asthma, 42:673 678.Apter A.J., Reisine S.T., Affleck G., Barrows E., & ZuWallack R.L. (1999) The influence of demographic and socioeconomic factors on health related quality of life in asthma. J Allergy Clin Immunol, 103(1): 72 78.Barnes N.C., & Williams A.E. (2005) Unscheduled healthcare resource use among asthma patients receiving low dose inhaled corticosteroids maintenance treatment. Int J Clin Pract, 59(9): 1017 1024.Eisner M.D., Yelin E.H., Katz P.P, Earnest G & Blanc P.D. (2002). Exposure to indoor combustion and adult asthma outcomes: Environmental tobacco smoke, gas stoves, and woodsmoke. Thorax, 57: 973-978.

ReferencesErickson S.R., Christian Jr. R.D., Kirking D.M., & Halman L.J. (2002) Relationship between patient and disease characteristics, and helath related quality of life in adults with asthma. Respiratory Medicine, 96: 450-460.Halterman J.S., Yoos H.L., Conn K.M., Callahan P.M., Montes G., & et al. (2004) The Impact of childhood asthma on parental quality of life. Journal of Asthma 41(6): 645-653.Institute of Medicine (IOM) (U.S.). (2000). Clearing the air: asthma and indoor air exposures. Washington, D.C: National Academy Press.Juniper E.F., Guyatt G.H., Feeny D.H., Ferrie P.J., Griffith L.E. & Townsend M. (1996a). Measuring quality of life in children with asthma. Quality of Life Research 5: 35-46.Juniper E.F., Guyatt G.H., Feeny D.H, Ferrie P.J., Griffith L.E, & Townsend M. (1996b) Measuring quality of life in the parents of children with asthma. Quality of Life Research 5: 27-34.Krieger J.W., Takaro T.K., Song L., & Weaver M. (2005) The Seattle King County Healthy Homes Project: A randomized, controlled trial of a community health worker intervention to decrease exposure to indoor asthma triggers. American Journal of Public Health, 95(4): 652 659.

ReferencesKurnat E.L., Moore C.M. (1999) The impat of a chronic condition on the families of children with asthma. Pediatric Nursing, 25 (3): Career and Technical Education pg 288.Leidy N.K, Chan K.S., & Coughlin C. (1998) Is the asthma quality of life questionnaire a useful measure for low income asthmatics? Am J Respir Crit Care Med 158: 1082-1090.Leidy N.K., & Coughlin C. (1998) Psychometric performance of the Asthma Quality of Life Questionnaire in a US sample. Quality of Life Research 7: 127-134.Leung R., Koenig J.Qu., Simcox N., van Belle G., Fenske R., & Gilbert S.G. (1997) Behavioral changes following participation in a home health promotional program in King County, Washington. Environ Health Perspect. 105(10): 1132-5.Levy J.I., Welker Hood L.K., Clougherty J.E., Dodson R.E., Steinbach S., & et al. (2004) Lung function, asthma symptoms, and quality of life for children in public housing in Boston: a case series analysis. Environmental health: A Global Access Science Source 3 (13).

ReferencesMedical Assistance Administration. (2005). Medical Eligibility Overview. Accessed online May 2006 at http://fortress.wa.gov/dshs/maa/eligibility/OVERVIEW/MedicalOverviewChildrens.htm.Meszaros A, Zelko R, Mesko A, & Vincze Z. (2005) Factorial design for the analysis of patients quality of life in asthma. Qual Life Res 14: 191-195.National Asthma Education and Prevention Program (NAEPP). (2002). National Asthma Education and Prevention Program Expert Panel Report: Guidelines for the Diagnosis and Management of AsthmaUpdate on Selected Topics 2002. (2002). National Heart, Lung, and Blood Institute, National Institutes of Health, NIH Publication No. 97-4051: Bethesda, MD. Retrieved September 19, 2005 from http://www.nhlbi.nih.gov/guidelines/asthma/index.htmNational Asthma Education and Prevention Program (NAEPP). (2006). National Asthma Education and Prevention Program: Program Description. Accessed online May 2006 at: http://www.nhlbi.nih.gov/about/naepp/naep_pd.htm.National Center for Environmental Health of the Centers for Disease Control and Prevention. (2005) Asthma's Impact on Children and Adolescents." Retrieved June 2005, from: http://www.cdc.gov/asthma/children.htm

ReferencesPrimomo J., Johnston S., DiBiase F., Nodolf J., & Noren L. (2006). Evaluation of a community based outreach worker program for children with asthma. Public Health Nursing, 23(3): 234 - 241.Schatz M, Mosen D, Apter A.J., Zeiger R.S., Vollmer W.M, et al. (2005) Relationships among quality of life, severity, and control measures in asthma: An evaluation using factor analysis. J Allergy Clin Immunol, 115(5): 1049-1055.Sippel J.M., Pedula K.L, Vollmer W.M., Buist A.S., & Osborne M.L. (1999). Associations of smoking with hospital - based care and quality of life in patients with obstructive airway disease. Chest, 115: 691 - 696von Rueden U., Gosch A., Rajmil L., Bisegger C., Ravens Sieberer U., & the European Kidscrren group. (2006) Socioeconomic determinants of health related quality of life in childhood and adolescence: Results from a European study. J. Epidemiol. Community Health, 60: 130-135.

Questions?

Asthma prevalence, health services utilization and mortality has been increasing nationally since 1980, primarily among children under age 14.Asthma is the 3rd leading cause of hospitalization among children under 15 years.Asthma leads to 14 million missed school days each year.This 13 - item questionnaire asks caregivers about their activities, such as During the past week, how often did your family need to change plans because of your childs asthma? and their feelings, such as During the past week, how worried or concerned were you about your childs performance of normal daily activities? (Juniper et al., 1996b) The PACQLQ score is generated as a mean of the individual question scores, with higher scores reflecting improved QOL.

Generates two subscores: Emotional Function and Activity limitation score. This study uses Both the summary score as well as the emotional function and activity limitation score separately as outcome variables.Unlike caregiver QOL, there is a large body of literature describing asthma patient QOL. The Asthma Quality of Life Questionnaire (AQLQ) measures asthma patient QOL by asking questions about how asthma affects patients activities and feelings about asthma (Juniper, et al., 1996a). Studies using the AQLQ illustrate how patient QOL is related to patient, disease, and demographic factors. Despite differences between the AQLQ and the PACQLQ, these factors may be related to caregiver QOL similarly as to patient QOL. Studies find that perceived asthma severity is associated with AQLQ scores (Levy et al., 2004) more consistently than objective measures of lung function (Leidy, Chan & Couglin, 1998a; Leidy & Couglin, 1998b). Environmental tobacco smoke (ETS), a known irritant and cause of increased asthma symptoms (Eisner, Yelin, Katz, Ernest & Blanc, 2002), also decreases asthma patient QOL (Sippel, Pedula, Vollmer, Buist & Osborne, 1999). Education (Leidy et al., 1998) and income are also associated with both adult (Adams, Wison, Smith & Ruffin, 2004; Apter, Reisine, Affleck, Barrows & ZuWallack, 1999) and child (von Rueden et al., 2006) QOL, even though one study found no relationship between income and asthma - related behavior changes (Leung et al., 1997).

Though caregiver QOL is included as an outcome measure in some intervention studies, (Krieger, Takaro, Song & Weaver, 2005) few have studied the extent to which caregiver QOL is related to patient, caregiver, disease, and demographic factors. One study found that child symptom free days and parent perception of disease control predicted higher parental QOL (Halterman et al., 2004). This study also found that Hispanic ethnicity, maintenance medication use, and smoking in the household were associated with decreased parental QOL. A study of asthmatic children in Boston public housing found that while child lung function was not significantly associated with caregiver QOL, the frequency of the childs respiratory symptoms and ICU treatment at birth predicted lower caregiver QOL (Levy et al., 2004). Table 1 presents characteristics of the 104 caregivers and their children for whom data was available. Most caregivers were female (95.19%) and had greater than high school education (61.54%). Most caregivers were older than 30 years (67.30%) and approximately one-half worked outside the home (49.04%). Caregivers were primarily Caucasian (59.62%) and African American (20.19%), while 20.2% represented all other racial and ethnic backgrounds. Mean child age for this sample was 5.9 years old, and the majority of children were boys. The majority of children had either moderate or severe asthma (86.14%) and did not have an asthma management plan (69.23%), though 63% used a long - term controller medication. Over one-half (51%) of the children visited the ER in the previous year (49.04%), and approximately one-third (36%) were hospitalized for their asthma. Families included an average of 1.52 people with asthma, and the majority had an income of less than $40,000 per year (66.31%). Caregivers had a mean summary QOL score of 4.67.

Increased numbers of ER visits was associated with decreasing caregiver QOL, indicating the importance of interventions to avoid emergency health care. Prior intervention studies and national best practices for treatment of asthma have shown that improving indoor environmental exposures, asthma management practices, and coordination of care all prevent emergency health care utilization (NAEPP, 2002; Primomo et al., 2006; Krieger et al., 2005). The influence of child age on AL scores and caregiver education on summary QOL and EF scores indicate the importance of delivering these proven interventions to less educated caregivers of young children.