Published online January 2, 2007
PEDIATRICS Vol. 119 No. 1 January 2007, pp. e93-e102 (doi:10.1542/peds.2005-3211)
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ARTICLE

At What Age Can Children Report Dependably on Their Asthma Health Status?

Lynn M. Olson, PhDa, Linda Radecki, MSa, Mary Pat Frintner, MSPHa, Kevin B. Weiss, MDb, Jon Korfmacher, PhDc and Robert M. Siegel, MDd

a Department of Research, American Academy of Pediatrics, Elk Grove Village, Illinois
b Center for Healthcare Studies, Feinberg School of Medicine, Northwestern University, Chicago, Illinois
c Erikson Institute, Chicago, Illinois
d Cincinnati Pediatric Research Group, Division of General and Community Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio


   ABSTRACT
TOP
 ABSTRACT
METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 
OBJECTIVE. This study examined psychometric properties and feasibility issues surrounding child-reported asthma health status data.

METHODS. In separate interviews, parents and children completed 3 visits. Child questionnaires were interviewer administered. The primary instrument was the Children's Health Survey for Asthma–Child Version, used to compute 3 scales (physical health, activities, and emotional health). The following were assessed: reliability (internal consistency and test-retest reliability), validity (general health status, symptom burden, and lung function), and feasibility (completion time, missing data, and inconsistent responses).

RESULTS. A total of 414 parent-child pairs completed the study (mean child age: 11.5 years). Reliability estimates for the activities and emotional health scales were >.70 in all but 1 age category; 5 of 9 age groups had acceptable internal consistency ratings (≥.70) for the physical health scale. Cronbach's {alpha} tended to increase with child age. In general, test-retest correlations between forms and intraclass correlation coefficients were strong for all ages but tended to increase with child age. Correlations between forms ranged from .57 (7-year-old subjects, physical health) to .96 (14-year-old subjects, activities). Intraclass correlation coefficients ranged from .76 (13-year-old subjects, emotional health) to .94 (15–16-year-old subjects, physical health). Children with less symptom burden reported higher mean Children's Health Survey for Asthma–Child Version scores (indicating better health status) for each scale, at significant levels for nearly all age groups. Children's Health Survey for Asthma–Child Version completion times decreased from 12.9 minutes at age 7 to 6.9 minutes at age 13.

CONCLUSIONS. This research indicates that children with asthma as young as 7 may be dependable and valuable reporters of their health. Data quality tends to improve with age.

Key Words: child • pediatric • asthma • health status • Children's Health Survey for Asthma

Abbreviations: CHSA—Children's Health Survey for Asthma • CHSA-C—Children's Health Survey for Asthma–Child Version • ASD-14—Asthma Symptom Day-14 • FEV1—forced expiratory volume in 1 second • LSD—least-significant difference • PPVT-III—Peabody Picture Vocabulary Test • Third Edition

Whether to collect patient-reported data (such as health status or health-related quality of life) from parents or children is an important question in both pediatric research and clinical practice. For children who are too young or too ill to respond, parents are often the logical informants to report on their child's activities and well-being. Given the challenges involved in gaining information from children, such as comprehensibility, response biases, and time constraints, many pediatric health status measures have relied on parent report as a proxy for child report.1–4 However, parents and children may have different views on the impact of disease, and some attributes of health, such as emotional distress and intensity of pain, are difficult for parents to observe. Parent assessments may also be incomplete because most school-aged and older children are away from their parents for many hours each day. Mothers and fathers might differ in their ability to report on their child's health. Although obtaining the perspective of parents is important, parents can provide only an indirect account of child experience.

Beyond clinical utility, there is a pressing need to understand more fully children's ability to act as research respondents. Current National Institutes of Health policies encourage federally funded researchers to include children in clinical studies, and the goal of the Best Pharmaceuticals for Children Act is to increase significantly the number of pediatric studies.5,6 In many instances, children may be capable of providing information about internal or subjective dimensions of health that parents are unable to offer,7,8 but critical questions remain. What age is "old enough?" At what age can children provide dependable information about their health status?

Several generic health status measures for child self-report are now available, and there is growing evidence that children can be reliable and valid reporters.8–16 Because asthma is one of the most common conditions in childhood,17 several specific measures for this condition are available.18–24 However, information on the age-specific capacity of children to complete patient report measures is limited. Child report data are provided frequently according to age group or for the total group, rather than being delineated by age. Furthermore, a discussion of feasibility issues, such as the time and techniques required to obtain data from children, is often omitted or given cursory attention.

A child's chronologic age and developmental capabilities shape his or her comprehension of abstract concepts related to health and perceptions of health status.25–27 As yet, these are understudied aspects of pediatric health status measurement. With standard questionnaire methods, at what age do children become dependable reporters of their own health status? The purpose of this study was to examine the reliability, validity, and feasibility of child report data for children 7 to 16 years of age, by using a measure of asthma-related health status.


   METHODS
TOP
 ABSTRACT
 METHODS
RESULTS
 DISCUSSION
 REFERENCES
 
Overall Study Design
Data were collected between December 2002 and December 2004. We interviewed children 7 to 16 years of age with asthma and their parents. Our primary aim was to examine the psychometric quality of child report data by using commonly available survey methods; we focused primarily on the Children's Health Survey for Asthma–Child Version (CHSA-C). The CHSA-C was adapted from an existing parent report instrument, the Children's Health Survey for Asthma (CHSA); the strong validity and reliability of the CHSA were reported previously,28 and the instrument has been used in numerous asthma studies.29–32 We conducted intensive one-on-one interviews with young children before data collection, to make practical, child-friendly, questionnaire modifications (such as a calendar review to facilitate understanding of a 2-week recall period and visual representation of Likert-type response choices). Details about the CHSA, the development of the CHSA-C, and the data collection process are available from the authors at the American Academy of Pediatrics.

Our analysis focused on 3 areas for assessment of children's capacity to report, namely, reliability (measured as internal consistency reliability and test-retest reliability), validity (measured by comparing scale scores with general health status, asthma symptom burden, and lung function test results), and feasibility (measured as the length of time to complete the CHSA, missing data, and inconsistent responses). The study protocol was approved by the institutional review boards of the American Academy of Pediatrics, Northwestern University, and Cincinnati Children's Hospital.

Subjects
We recruited families in the cities and surrounding suburbs of Chicago, Illinois, and Cincinnati, Ohio. Recruitment was conducted through on-site contact in asthma clinics; flyers distributed through physicians' offices or clinics and through community sites such as schools, day care centers, and churches; and volunteer physicians, who mailed letters about the project to eligible families in their practices. To maximize convenience for participants, interviews were conducted in local schools, libraries, community centers, and clinics.

Recruitment was structured to provide equivalent numbers of subjects among children 7 to 16 years of age. Screening procedures excluded children with substantial comorbidities and those currently participating in another asthma study. The oldest children (15 and 16 years of age) were combined in 1 age group.

Data Collected
Three study visits were scheduled over ~16 days (Table 1). Visit 1 included study protocol training (eg, use of an electronic peak flow meter) and administration of a parent-completed background questionnaire. For their participation, parents received $15 cash and children received a $10 gift certificate at the completion of visits 2 and 3. Twenty-three families dropped out after visit 1 and were excluded from subsequent analyses.


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  		TABLE 1 Interview Protocol for Study Participants

 
All child questionnaires were interviewer administered. Data were collected either by the authors (Ms Radecki and Ms Frintner) or by project staff members trained by those authors. Interviews with the parent and child were conducted separately during visits 2 and 3. To put child participants at ease, we assured them that the questions were not intended to test their asthma knowledge. The concept of 2-week recall (as used throughout the CHSA-C) was explained by reviewing a blank calendar of the previous 2 weeks, noting any important events (not limited to asthma) that had occurred for the child during that period. Response choice cards were also used with children, so that they could either verbalize their answers or point to the circles that corresponded to their answers.

CHSA-C
The primary outcome was performance on the CHSA-C. The CHSA-C includes 21 demographic and asthma history questions and 25 core items used to compute 3 scales, namely, physical health, activities, and emotional health. The physical health scale (7 items) includes questions about asthma symptoms, such as wheezing, cough, and difficulty breathing. Child activities (6 items) address limitations in school and other activities attributable to asthma. Questions from the emotional health scale (12 items) examine issues such as frustration with asthma and lack of understanding from others. Children are asked to think about the past 2 weeks; all scale item responses use a 5-point Likert format (eg, "During the past 2 weeks, how much of the time did you have shortness of breath because of your asthma?" none/little/some/most/all of the time). Scale scores were created with computation of mean item responses and were then transformed, giving each scale a possible range from 0 to 100. Higher scale scores indicate more-positive perceived health status. Additional information about scale computation is available from the authors.

Comparative Measures of Asthma and Health Status
General Health Status
Parents provided a rating of overall child health; 5 fixed-choice responses ranged from excellent to poor and were dichotomized for analyses into 2 categories (excellent to very good and good to poor).

Symptom Burden
A separate summary measure of asthma symptom burden was gathered from children by using an adaptation of the existing parent report Asthma Symptom Day-14 (ASD-14).33 Although there are no extensively validated measures that provide a count of symptom burden for children, the instrument we chose has been used in several national and international studies.31,34,35 Children were asked a short series of questions to elicit the total number of days during the past 2 weeks in which they experienced asthma daytime or nighttime symptoms or limitations in play/daily activities. Two-week recall of asthma symptoms tends to have a bathtub distribution, with frequent responses at both ends of the scale. As in a previous study, activity was categorized as low (0–2 days), moderate (3–10 days), or high (≥11 days).28 Because of small subgroup size in the high category (n = 18), the moderate and high groups were combined for analyses.

Child Lung Function
We obtained lung function data from the children over a 2-week period by using a Vitalograph electronic peak expiratory flow/forced expiratory volume in 1 second (FEV1) diary (Vitalograph, Lenexa, KS). Similar to a peak flow meter, the Vitalograph unit is a hand-held device that can be used to collect and store lung function data from both adults and children. Children were instructed in the use of the Vitalograph at visit 1 and were given an opportunity to practice their technique until the interviewer was satisfied that the child could use the equipment successfully and the family felt comfortable with the Vitalograph instructions. Take-home instructions were provided, as well as a contact telephone number for use if problems arose. Children were asked to use the Vitalograph twice daily, once in the morning, before eating or using any medication, and once in the evening, immediately before going to bed.

Families were asked to return the Vitalograph devices at visit 2; at visit 3, they were provided with a report of lung function that included peak flow, peak expiratory flow, and FEV1 and a letter explaining the project and the results. Each family was encouraged to share the Vitalograph report with the child's physician.

A summary score of lung function using Vitalograph data was created by calculating an average morning FEV1 percent predicted value. Percent predicted values were categorized into 2 groups (≤79% and ≥80%).

Developmental Verbal Ability
Each child's verbal ability was measured by using the Peabody Picture Vocabulary Test, Third Edition (PPVT-III).36 The PPVT-III is a developmental measure of receptive vocabulary, standardized with a mean of 100 and a SD of 15 across ages.

Child Characteristics
Parents completed a 26-item background questionnaire with questions on basic child and parent demographic features and child asthma indicators. Parents were asked to rate their child's asthma in the past year as mild, moderate, or severe and as intermittent or persistent. Parents also identified the types of asthma medications (both rescue and controller) used by the child and the frequency of use.

Analytic Plan
Descriptive Analyses
Descriptive statistics, including mean, SD, and range, were examined for individual items and scales. Analysis of variance and least-significant difference (LSD) posthoc tests (significance level of .05) were used to assess differences in CHSA-C scale scores according to child age.

Reliability Testing
We assessed internal consistency of CHSA-C responses at visit 2 for each age group by examining Cronbach's {alpha} for each scale. Reliability estimates reaching ≥70 were considered acceptable, in keeping with conventions for group-level analyses.37 Test-retest analyses were conducted for the 287 children whose asthma remained stable between visit 2 and visit 3 (~48-hour interval). Stability was determined by asking the parent and child directly, on arrival at visit 3, whether either had noticed any asthma-related problems since visit 2. If the answer was yes (n = 64), then the child's asthma was not considered stable between visit 2 and visit 3 and the data were excluded from test-retest analyses. An additional 36 families, for whom stability data were not obtained early in the data collection process, were also excluded from test-retest assessments. We examined test-retest reliability by calculating the intraclass correlation coefficient (a measure of average similarity of visit 2 and visit 3 CHSA-C scores), as well as correlation between forms.

Validity Testing
To assess whether the CHSA-C could distinguish severity, independent-sample t tests and analysis of variance with LSD posthoc tests (significance level of .05) were used. For each age group, we examined CHSA-C scale scores at visit 2 according to 3 indicators of disease severity, namely, general health status, symptom burden (ASD-14), and lung function test scores (Vitalograph).

Feasibility Assessments
Feasibility of child completion across age groups was measured by calculating the length of time required for CHSA-C administration, the amount and type of missing CHSA-C data (includes not providing an answer or selecting "don't know" as a response), and the mean number of inconsistent answers (eg, CHSA-C and ASD-14 responses were compared and counted as inconsistent if they disagreed, such as responses of "0" for the number of times wheezed in the past 2 weeks on one question and "some of the time" for a similar question about wheezing). Analysis of variance and LSD posthoc tests (significance level of .05) were used to identify differences in administration times, mean missing data, and mean inconsistent response counts across child ages.


   RESULTS
TOP
 ABSTRACT
 METHODS
 RESULTS
DISCUSSION
 REFERENCES
 
Sample Characteristics
A total of 437 families enrolled in visit 1; 414 parent-child dyads completed both visits 1 and 2, and 396 of those pairs completed visits 1 to 3 (Table 1). As shown in Table 2, child participants ranged in age from 7 to 16 years (mean age: 11.5 years) and were racially and economically diverse (45% black, 11% Hispanic, and >40% reporting an annual household income of less than $30000). Fifty-six percent of parent respondents were married. Most children had health insurance at the time of the study (88%; 59% with private insurance and 31% with public insurance).


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  		TABLE 2 Sample Demographic Features (n = 414)

 
Parent-rated child asthma severity was divided evenly, with 47% rated as mild and 53% as moderate/severe. Child asthma persistence was most often reported as intermittent (73%). On the basis of parent reports, the majority of children (71.5%) had ever visited the emergency department because of asthma; fewer (41.1%) reported an overnight hospital stay because of asthma. More than 60% of children used controller medication for ≥5 days and 20% used bronchodilator medicine for ≥5 days in the past 2 weeks. Less than 10% (7.7%) used corticosteroids for ≥2 months in the previous year. Sixty percent of parents rated the child's overall health as excellent to very good, whereas 40% described the child's overall health as good to poor.

For the sample overall, the distribution of PPVT-III standard scores was approximately equivalent to established population means (48% with a standard score of ≤100). As shown in Table 3, PPVT-III standard scores were generally equivalent across age groups (ranging from an average of 95.82 to 104.85), which indicates similar developmental capacity (compared with same-age peers) across age groups.


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  		TABLE 3 Selected Sample Characteristics According to Child Age

 
Descriptive Statistics for the CHSA-C
For the total sample, mean scale scores were 79.1 for physical health (range: 14.3–100.0; SD: 16.8), 83.9 for activities (range: 20.8–100.0; SD: 17.2), and 77.7 for emotional health (range: 20.8–100.0; SD: 18.5). In examination of CHSA-C scale scores according to age, analysis of variance revealed equivalence of scale scores across child ages for the physical health and activities scales. Differences were found for the emotional health scale (F8,405 = 3.08; P < .005); additional analysis with LSD tests indicated that younger children (7 and 8 years of age) scored lower.

Reliability Testing
Table 4 presents internal consistency reliability for each CHSA-C scale according to age group. Reliability estimates overall were strong, and the majority reached the acceptable range (≥.70). The lowest value for Cronbach's {alpha} was observed for 8-year-old subjects on the physical health scale (.61). The highest value was noted for 14-year-old subjects on the emotional health scale (.93). With a few exceptions, Cronbach's {alpha} values tended to increase with child age.


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  		TABLE 4 Internal Consistency Reliability According to Child Age

 
Values for 48-hour test-retest correlations between forms and the intraclass correlation coefficients are presented in Table 5. Across age groups, values for both measures were generally high, ranging above .75 in nearly all cases. In general, both correlations between forms and intraclass correlation coefficients tended to increase with child age.


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  		TABLE 5 Test-Retest Reliability at 48 Hours According to Child Age (n = 287)

 
Validity Testing
Table 6 provides age-specific CHSA-C scale scores according to parent-rated overall child health. Except for the 13-year-old subjects on the emotional health scale, children whose parents described their health as excellent to very good reported higher CHSA-C scale scores than did their counterparts with poorer overall health, although these differences were significant in only a few cases, among 8- and 9-year-old children and 15- and 16-year-old adolescents.


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  		TABLE 6 Mean CHSA-C Scale Scores According to Parent-Reported Overall Child Health Rating, Asthma Symptom Burden, and Child Age

 
Table 6 illustrates differences in CHSA-C scale scores according to asthma symptom burden (as measured with the ASD-14) for each age group. In each age category, children who reported less symptom burden reported higher CHSA-C mean scores for each of the 3 scales. These differences were significant in all but 2 instances.

Table 7 provides age-specific CHSA-C scale scores according to average FEV1 percent predicted values (based on morning readings). Useable Vitalograph data (data provided on ≥6 days) were provided by 369 (89%) of the 414 children. The mean number of morning reports provided by each child was 11.86 (SD: 3.34 reports). No consistent relationship was observed between CHSA-C scale scores and FEV1 percent predicted categories for any age group.


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  		TABLE 7 Mean CHSA-C Scale Scores According to Average FEV1 Percent Predicted (Morning) Values and Child Age (n = 369)

 
Feasibility Assessments
The mean completion time for the CHSA-C across all age groups was 9.4 minutes (SD: 3.7 minutes; range: 3–30 minutes). There was a significant linear decrease in the number of minutes children required to complete the CHSA-C between ages 7 and 13, decreasing from 12.9 minutes at age 7 to 6.9 minutes at age 13 (F8,382 = 20.31; P < .001).

Mean missing data counts for the CHSA-C were low across all age groups; the lowest level was found for 14-year-old subjects (mean: 0.53) and the highest for 7-year-old subjects (mean: 2.11). Analysis of variance showed a statistically significant difference among the groups (F8,405 = 6.66; P < .001), and posthoc testing revealed considerably more missing data for 7- and 8-year-old subjects. The youngest children had more difficulty providing responses to open-ended questions (eg, date of birth and age when asthma-related problems began).

Mean inconsistent response counts were low for all ages (mean: 1.0); the highest mean was found for 7-year-old subjects (mean: 1.4) and the lowest for 15- to 16-year-old subjects (mean: 0.69). No differences emerged for the group overall, but inconsistent responses tended to decline with child age.


   DISCUSSION
TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
REFERENCES
 
We found that children as young as 7 years of age could provide information about their asthma health status, with respect to symptoms, activity limitations, and emotional impact, within acceptable levels of reliability and validity. Although younger children performed adequately for the most part, it is important to note that psychometric properties were more variable for the younger age groups and data quality usually improved with age. Children <10 years of age also required notably more response time. Such practical issues can be important for obtaining data in research or clinical settings. These results were obtained by using an interviewer-administered questionnaire, under conditions designed to be child-friendly.

Previous studies relied primarily on grouping children of several ages together, and the ability to look at statistical properties of questionnaire performance for individual age groups is a unique aspect of this study. We found some anomalies according to age, depending on the domain of questions asked. Regardless of age, children were typically more reliable reporters about activity limitations and asthma-related emotional health than about physical symptoms. Measures of internal consistency on the physical health scale were variable, with 8-, 9-, 11-, and 14-year-old subjects performing less well than those in the other age categories. These anomalies, especially regarding the stronger performance of the 7-year-old subjects, are difficult to explain and may be related to unmeasured sample characteristics. It may also be that activity limitations and aspects of asthma-related emotional health are less changeable and thus easier, in general, for children to report than the sometimes-intermittent symptoms common to asthma. These findings suggest that additional research on age-specific differences in reporting is warranted.

Although we observed relationships in the expected direction for general health and symptom burden, we failed to find a relationship at any age between children's report of asthma health status and lung function test results, as measured over 2 weeks with the Vitalograph. Our findings are consistent with several other studies that found no relationship between measures of lung function and other measures of asthma status, including reported symptoms, health care utilization, and functional health status.32,38,39 This underscores the importance of including patient reports in assessing asthma status, because lung function measures may not equate closely with symptom experience.

Patient-reported instruments are being used increasingly in pediatric research, both as tools to study populations and for clinical interventions.8,40–45 Other research demonstrated the validity and reliability of child report instruments.10,12 The research presented here provides new, age-specific information on the quality of reports that can be obtained from children and adds to a growing body of evidence that we can and should ask children themselves about their health and perceptions of well-being.

Although researchers in other fields (eg, forensics and child psychology) have elicited psychometrically sound data from children as young as toddlers, this information often comes at a high cost, with methods involving highly trained researchers and/or time-consuming and expensive data collection techniques.46–49 For many investigators, such methods may be impractical or impossible, given limited funding and staffing.

There are several caveats to the conclusion that children can report for themselves. First, this project examined children's responses to a condition-specific instrument. Therefore, we cannot comment on children's ability to report on health overall or their performance on other asthma-specific instruments. Children's capacity to conceptualize other aspects of health, wellness, or illness requires additional exploration. The CHSA-C underwent substantial pretesting and revision (before this data collection effort), to maximize its potential as a child-friendly instrument. The interviewers also spent several minutes at the start of each session reviewing the concept of 2-week recall. Using a calendar, they encouraged children to think about and to note interesting/important events that occurred, to focus their attention on that time period. Not all projects may have the resources to support similar activities.

In the study, we assessed only 1 dimension of developmental ability, that of receptive language. Future work might measure other aspects of development that are important to health reporting, such as expressive language, memory, numeracy, and nonverbal reasoning skills. Additional study of individual age performance is also appropriate, to encourage more-precise determination of age-specific capabilities related to psychometric quality.

There is unlikely to be a single answer to the question of when children become appropriate reporters of their own health. The answers will depend on the known performance characteristics of the measure and will vary according to practical considerations. For example, although young children seemed capable of providing an assessment of their own asthma status in this study, the busy nature of a clinical practice may limit the ability of a physician to spend enough time to obtain such a history. However, this research indicates that, whenever possible, children as young as 7 may be dependable valuable reporters of their own health, at least for asthma.


   ACKNOWLEDGMENTS
 
This research was supported by grant 1 RO1 HL67989-01 from the National Heart, Lung, and Blood Institute.

The project was a collaborative effort that benefited from the involvement of Evalyn Grant, MD, Dorothy Elfring, MPH, and Jeralyn Bernier, MD, MPH, as well as the research assistants at Northwestern University Feinberg School of Medicine and Cincinnati Children's Hospital Medical Center. We are also most grateful to the dedicated children and parents who so willingly shared their thoughts and feelings.


   FOOTNOTES
 
Accepted Aug 1, 2006.

Address correspondence to Lynn M. Olson, PhD, Department of Research, American Academy of Pediatrics, 141 Northwest Point Blvd, Elk Grove Village, IL 60007. E-mail: lolson{at}aap.org

The authors have indicated they have no financial relationships relevant to this article to disclose.

The opinions expressed in this article are solely those of the authors and do not reflect the views of the organizations with which they are affiliated.


   REFERENCES
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 METHODS
 RESULTS
 DISCUSSION
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