Journal of Pediatric Psychology, Vol. 27, No. 1, 2002, pp. 77-86
© 2002 Society of Pediatric Psychology
Disentangling the Effects of Current Age, Onset Age, and Disease Duration: Parent and Child Attitudes Toward Diabetes as an Exemplar
University of Florida Health Science Center
All correspondence should be sent to Suzanne Bennett Johnson, Center for Pediatric Psychology and Family Studies, University of Florida Health Science Center, P.O. Box 100165, Gainesville, Florida 32610-0165. E-mail: sjohnson{at}hp.ufl.edu .
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Abstract |
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Objective: To develop a methodology for use with cross-sectional data to disentangle the effects of current age, disease onset age, and disease duration in chronically ill children.
Methods: We used a questionnaire data set from a large cross-sectional sample of mothers and children with Type 1 diabetes. The interdependence of current age, onset age, and disease duration precluded use of all three in the same regression model. Consequently, pairs of models were run, looking for a pattern in the results.
Results: The approach successfully disentangled the differential effects of the child's current age, disease onset age, and disease duration. Child current age predicted child attitudes about diabetes management rules, child sick-role identification, and maternal attitudes toward medical staff. Onset age predicted childperceived family disruption and mothers' confidence in detecting a hypoglycemic reaction. Disease duration predicted maternal religious beliefs about diabetes and maternal attitudes toward medical staff.
Conclusions: This study illustrates a methodology for disentangling the effects of child current age, disease onset age, and disease duration in cross-sectional data that may be useful for any childhood chronically ill population that varies in child onset age.
Key words: Type 1 diabetes; patient and parent attitudes; child age; onset age; disease duration.
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Introduction |
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Cross-sectional data are commonly used in studies of chronically ill children. Sometimes the child's current age, or the child's age at the time of disease onset, or the duration of the child's illness is the focus of investigation. Other times, these variables are of secondary interest, but their effects need to be statistically controlled to elucidate primary variable effects. However, since current age, onset age, and disease duration are often highly correlated, teasing out the specific effects of each can be difficult. This is a methodological problem for any childhood chronic disease that strikes children at varying ages.
A review of articles published in the Journal of Pediatric
Psychology (JPP) from 1995 to 2000 identified reports of child
current age effects (e.g., Chen, Craske,
Katz, Schwartz, & Zeltzer, 2000
;
Dalquist, Power, & Carlson,
1995; Gavin, Wamboldt,
Sorokin, Levy, & Wamboldt, 1999;
Heimlich, Westbrook, Austin, Cramer, &
Devinsky, 2000; La Greca et
al., 1995; Madan-Swain et al.,
2000; Murphy, Thompson, &
Morris, 1997; Phipps,
Fairclough, & Mulhern, 1995;
Thomas, Peterson, & Goldstein,
1997; Wysocki et al.,
2000), disease duration effects (e.g.,
Madan-Swain et al., 2000;
Phipps et al., 1995;
La Greca et al., 1995;
Seiffge-Krenke, 1997; Stewart et al.,
2000), and onset age effects (e.g.,
Frank, Blount, & Brown,
1997; Lockwood, Bell, &
Colgrove, 1999). Some investigators carefully considered the
potential effects of all three variables in their study design. For example,
Lockwood et al. were interested in the effect of cranial radiation therapy on
attention functioning in children with leukemia as a function of the child's
age at the time of radiation treatment. The investigators attempted to control
for disease duration effects by limiting their study to children who had been
in continuous disease-free remission for at least 6 years. They controlled for
current age effects by converting the dependent measures to age corrected
standard scores. Consequently, they could be reasonably certain that they were
reporting true effects of age at the time of cranial radiation therapy.
Whereas study design is one important way to tease out the differential effects of the child's current age, onset age, and disease duration, practical and methodological considerations do not always make this possible (e.g., there may be insufficient numbers of children to limit the study to those with a specified disease duration or onset age; age-based normative data may be unavailable for a particular dependent measure). More commonly, investigators analyze or report the effects of one of these variables with no comment as to the potential confounding effects of the other two. Consequently, published reports of current age, onset age, or disease duration effects often can be questioned on methodological grounds. However, disentangling these effects cannot be easily accomplished using usual statistical methods. Not only are the variables highly correlated in most samples, but if two of the variables are known, the third can be perfectly predicted. Consequently, one cannot tease out currentage effects, for example, by "controlling" for onset age and disease duration using usual multiple regression methods.
We have struggled with these same issues in our own work with children who have Type 1 diabetes. Onset age varies from birth to adulthood and many of our studies and others use a wide age range of patients. The literature is replete with reports of current age, onset age, and disease duration effects on biologic, behavioral, and psychological variables.
For example, the child's current age has been associated with glycemic
control (adolescents are in poorer glycemic control than younger children,
presumably due to increased insulin resistance during puberty; Amiel, Sherwin,
Simonson, Lauritano, & Tambolane, 1986;
Blethen, Sargeant, Whitlow, & Santiago,
1981; Bloch, Clemons, &
Sperling, 1987; Cutfield,
Bergman, Menon, & Sperling, 1990), parental supervision of the
child's diabetes care (adolescents are supervised less by their parents than
younger children; Allen, Tenne, McGrade,
Affleck, & Ratzan, 1983;
Anderson, Ho, Brackett, Finkelstein, &
Laffel, 1997; Ingersoll, Orr,
Herrold, & Golden, 1986;
Johnson, 1995), and diabetes
regimen compliance (adolescents are less compliant than younger children;
Anderson et al., 1997;
Johnson, 1995).
The child's age at the time of disease onset has been associated with
psychological adjustment to the disease (increased behavior problems and
higher levels of depression have been reported in youths with a later, versus
earlier, age of diabetes onset; Rovet,
Ehrlich, & Hoppe, 1987;
Schoennerr, Brown, Baldwin, & Kaslow,
1992), responsibility for diabetes care (youths diagnosed during
adolescence have been described as taking less responsibility for their
diabetes care than children diagnosed before the onset of puberty;
Allen et al., 1983), and
cognitive functioning (children with diabetes onset before age 5-7 years may
be at risk for more cognitive problems than children with later-onset
diabetes, presumably due to the effects of severe hypoglycemia on the
developing brain; Hagen et al.,
1990; Ryan, Vega, & Drash,
1985).
Disease duration has been associated with glycemic control (due to
transient resumption of endogenous insulin production, children with diabetes
of less than 1 year are often in far better glycemic control than children who
have had the disease longer; Travis,
Brouhard, & Schreiner, 1987), diabetes regimen compliance
(compliance is best immediately after diagnosis and then deteriorates over
time; Allen et al., 1983;
Jacobson et al., 1990), social
support (with longer disease duration, children often experience reduced
sympathy from others and find caring for their diabetes more taxing;
Gardiner, 1997;
Kovacs et al., 1990;
Lernmark et al., 1996), and
disease adaptation (anxiety, behavior problems, and depression increase
immediately after diagnosis but dissipate after 6 months to 1 year;
Grey, Lipman, Cameron, & Thurber,
1997; Kovacs, Brent,
Steinberg, Paulauskas, & Reid, 1986;
Kovacs et al., 1985;
Northam, Anderson, Adler, Werther, &
Warne, 1996).
However, many of these findings can be questioned on methodological grounds due to the confounding of current age, onset age, and disease duration. We elected to approach this problem using a data set of parent and child attitudes toward diabetes for which the patients' current age, onset age, and disease duration were known. To our knowledge, the differential effects of all three variables have not been previously examined in a single investigation in this population. Although parent and child attitudes toward a child's diabetes are of interest in their own right, we hope the approach described may serve as an exemplar for use by other investigators facing a similar methodological dilemma when studying Type 1 diabetes or other diseases of childhood.
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Method |
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Participants
Participants were 145 children, ages 7-17 years, and their mothers, as well as an additional sample of 70 mothers whose children did not complete the questionnaires (the child was too young or unavailable at the time the mother completed her questionnaire). Table I contains complete demographic data.
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Procedure
The study's procedures were reviewed and approved by the institutional
review board; consent was obtained from participating mothers, assent from the
children.
Participants were identified and approached during the child's regularly scheduled outpatient clinic visit. Questionnaires were administered in the waiting area of the clinic prior to the child's medical visit. Both written and verbal instructions were given to the mother and the child by an adult examiner (undergraduate students). For children who were 7-10 years old, the examiner read the questions aloud to the child. Children 11 years or older completed the questionnaire themselves, unless they requested assistance. The children completed the Diabetes Opinion Survey-R4 (DOS), and the mothers completed the Parent's Diabetes Opinion Survey-R4 (PDOS) and a demographics questionnaire that requested information on the child's date of birth and age at diagnosis. Mothers completed the PDOS regardless of their child's age. Children younger than 7 were not asked to complete the DOS.
Measures
Diabetes Opinion Survey-R4. The fourth version of the DOS
consisted of 73 statements measuring diabetes-specific attitudes in children
with this disease. The respondent agreed or disagreed with each item on a
5-point scale. A factor analysis of the previous version of the DOS derived
five scales: Stigma (others treat the child differently because of diabetes),
Rule Orientation (strict adherence to a set of rules for diabetes care),
Divine Intervention (diabetes is a test of faith or can be cured by God),
Family Interruption (diabetes has changed or made problems for the family),
and Sick Role (child needs special treatment because of diabetes)
(Johnson, Silverstein, Cunningham, and
Carter, 1985). In addition, a lie scale is included, adapted from
the Children's Manifest Anxiety Scale (CMAS; Castenada, McCandless, &
Palermo, 1956).
Parents Diabetes Opinion Survey-R4. The fourth version of the PDOS
consisted of 105 items addressing parental attitudes toward their child's
diabetes. The respondent agreed or disagreed with each statement on a 5-point
scale. A factor analysis of the previous version of this instrument resulted
in eight scales: Stigma (others treat the child differently because of
diabetes), Rule Orientation (strict adherence to a set of rules for diabetes
care), Divine Intervention (diabetes is a test of faith or can be cured by
God), Family Interruption (the child's diabetes is a source of problems for
the family), Manipulativeness (the child uses diabetes to manipulate others),
Attitudes Toward Medical Staff (beliefs that the staff is understanding,
caring, and devotes sufficient time to the child), Reactions:
Observation/Detection (the parent's belief that she can tell when the child's
blood glucose levels are too high or too low), and Sweet Consumption (child
should never eat sweets). The lie scale for the PDOS was adapted from the
Personality Inventory for Children (PIC;
Wirt, Lachar, Klinedinst, & Seat,
1977).
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Results |
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Measurement Reliability
To measure the internal consistency of the DOS-R4 and PDOS-R4 scales, Cronbach's coefficient alpha was calculated for each scale (Cronbach, 1951
;
Nunnally & Bernstein,
1994) (see Table
II). For all of the attitude scales, a lower score indicates
stronger agreement with that particular attitude. The exception is the PDOS
Lie scale, where a high score indicates biased reporting in a socially
desirable direction.
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Approach to Data Analysis
As expected, current age, onset age, and disease duration were all
significantly correlated (see Table
III). Because the literature suggests that biologic as well as
psychosocial effects of disease duration are often nonlinear, with primary
effects noted between newly diagnosed patients (<1 year) and those who have
had the disease more than 1 year (e.g.,
Grey et al., 1997;
Jacobson et al., 1990; Kovacs
et al., 1985,
1986;
Northam et al., 1996;
Travis et al., 1987), we
elected to treat disease duration as a two-level ordinal variable (disease
duration < 1 year versus > 1 year). Consequently, correlations using
disease duration both as a two-level ordinal and as a continuous variable are
presented in Table III.
Although two-level ordinal effects are presented below, we did reexamine the
data using disease duration as a continuous variable; no additional disease
duration effects emerged, and a number of the two-level ordinal effects were
lost. The literature also suggests that current age and onset age are best
treated as continuous variables. However, it is possible that age or onset age
effects are nonlinear. Consequently, we reexamined the data by treating
current age as an ordinal variable with five levels (6-9, 10-11, 12-13, 14-15,
and 16-19 years) and onset age as an ordinal variable with two levels (<5
years vs. >5 years). This method of treating the data failed to yield
additional disease duration and onset age effects undetected by treatment of
the data as continuous. Consequently, we report here only current age and
onset age effects where the data were treated as continuous.
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To tease out the differential effects of the three correlated variables of interest (current age, onset age, and disease duration), we elected to use multiple regression. However, as indicated previously, knowing the value of two of the variables perfectly predicts the third. (For example, if you know a child was diagnosed at the age of 8 and the child is now 18, the child's disease duration can be perfectly predicted: 10 years). Consequently, it is not possible to test for the effect of one variable while controlling for the effect of the other two in the same regression model. To address this problem, we elected to run pairs of models, looking for a consistent pattern in the results. For example, suppose we were interested in the effects of current age. We would run two models, one controlling for onset age and a second model controlling for disease duration. Only those current age effects that remained significant in both models were considered true current age effects. This approach allowed us to determine which attitudes were predicted by which variable (current age, onset age, or disease duration), independent of the other two variables.
Multiple regression also permitted us to control for effects of other variables such as the child's gender or a tendency to report in a positively biased manner (assessed by the lie scales). No significant relationships between the child's gender and DOS or PDOS scale scores were found; therefore, gender was dropped from our analyses. However, both the DOS and PDOS lie scales were significantly correlated with multiple attitude scales; therefore, we included the relevant lie scale in all models.
Regression Results
As described, multiple pairs of models were run to disentangle effects of
current age, onset age, and disease duration. Only significant findings are
reported here.
Current Age. The effects of current age, disentangled from the effects of onset age and disease duration, are presented in Table IV. Current age effects emerged for the DOS Rule Orientation and Sick Role scales. Older children were less rule-oriented about their diabetes care than younger children. However, younger children are more likely to see themselves as needing special treatment because of their diabetes. The child's current age was also predictive of PDOS Attitudes Toward Medical Staff; mothers of older children were more likely to perceive the medical staff as giving more time and showing greater concern to the child.
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Onset Age. Onset age effects occurred for the DOS Family Interruption scale and the PDOS Reactions: Observation/Detection scale (see Table V). The older the child at the time of diagnosis, the more the child reported family disruption associated with the disease. Mothers whose children were young when diagnosed with Type 1 diabetes believed they could observe and detect symptoms of high or low blood glucose in their child more accurately than mothers of children who were older at the time of disease onset.
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Disease Duration. Two disease duration effects emerged, both on the PDOS scales (Divine Intervention and Attitudes Toward Medical Staff: see Table VI). Mothers' beliefs that diabetes is a religious test decreased the longer her child had diabetes. The longer the child had the disease, the more positive were maternal attitudes toward medical staff.
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Discussion |
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The results from this study suggest that the effects of the child's current age, onset age, and disease duration must be carefully disentangled if we are to understand the particular contributions of each. Since the variables are interdependent, disentangling their effects presents a unique challenge. We present here one approach to this problem for use with cross-sectional data.
Unfortunately, many investigators fail to examine the effects of any of these three variables on outcome variables of interest or select only one, ignoring the remaining two. In the former case, important information may be lost. In the second scenario, significant findings attributed to one variable may, in fact, be the result of a second correlated variable untested by the investigator. In this example, the DOS Rule Orientation scale scores were significantly correlated with all three variables: current age, onset age, and disease duration (see Table III). However, a comparison of relevant pairs of regression equations suggested that the effect is best explained by current age; the significant correlations between Rule Orientation and onset age and disease duration were spurious and simply a product of the interdependence of onset age and disease duration with current age. Also in this example, an initial inspection of correlations between current age, disease duration, onset age, and DOS Family Interruption scale scores suggested that only disease duration may be significantly correlated with this scale's scores. However, a comparison of relevant pairs of regression equations suggested that the effect is best explained by onset age.
In this particular study sample, current age, onset age, and disease
duration related to different attitudes about this disease. Current age was
related to the child's attitudes toward rules about diabetes management, with
older children less adherent to rules than younger children. This finding is
consistent with other literature documenting greater noncompliance among
adolescents than their younger counterparts (e.g.,
Anderson et al., 1997;
Ingersoll et al., 1986;
Jacobson et al., 1990;
Johnson, 1995). Current age
was also predictive of sick-role identification, with younger children seeing
themselves as needing special treatment because of their diabetes. At this
point, we do not understand all of the factors underlying this perception.
Certainly, younger children may receive more attention or "special
treatment" from parents, doctors, or teachers as a result of their need
for adequate adult supervision as part of their daily diabetes care. In
contrast, older children may be expected to learn about and care for their own
diabetes, with parents and teachers less involved in daily diabetes
management. Older children also have more sophisticated cognitive abilities,
more varied life experiences, as well as increased freedom. As a result,
adolescents are likely to have a more complex self-view than younger children
and may be less likely to view themselves in the sick role solely because of
diabetes.
Current age was also predictive of mothers' beliefs about the health care
staff, with mothers of older children viewing the medical staff as having more
time and concern or understanding for the child. Previous research has
documented the more limited role parents play in an adolescent's, compared to
a younger child's, diabetes care (e.g.,
Anderson et al., 1997;
Ingersoll et al., 1986;
Jacobson et al., 1990;
Johnson, 1995). In our
clinical experience, we have noted a clear shift among providers when the
youngster reaches adolescence, with more provider time directed at the
adolescent than the parent; indeed, parents are often asked to leave the
examination room to give the adolescent the opportunity to speak more freely
with the provider. Further, providers are well aware of the compliance
problems associated with adolescence and may attempt to address this issue by
spending more time with the adolescent patient in an effort to establish a
productive collaboration.
In this study sample, onset age was predictive of the child's Family
Interruption scale score. Youngsters who were older at the time of diagnosis
reported that diabetes had presented more problems for the family than
children who were younger at the time of diagnosis. Due to their increased
cognitive abilities, adolescents may perceive the kinds of problems faced by
families when a child is diagnosed with this disease; a younger child may be
more oblivious. However, the available literature does suggest that
adolescents may have more difficulty successfully adapting to the demands of
this disease than younger children (Allen
et al., 1983; Rovet et al.,
1987; Schroenerr et al., 1992), which could in turn cause greater
family disruption. However, this effect occurred only for the child's Family
Interruption scale score but not for the mother's scale score. This suggests
that the former interpretation of the data may be more likely; that is,
disease diagnosis disrupts the family at any age, but the adolescent is more
likely to be aware of the disruption than a younger child.
Onset age was also predictive of maternal beliefs that she could detect blood glucose extremes in the child. Mothers with children who were young at the time of diagnosis had more confidence that they could detect the child's blood glucose highs or lows than mothers whose children were diagnosed at a later age. Very young children require very close parental monitoring, as they do not have the cognitive or verbal ability to communicate effectively when they are having a hypoglycemic reaction. In contrast, adolescents are expected to communicate to others when they need assistance. Consequently, mothers of children who were diagnosed at an early age may feel they can detect their child's blood glucose extremes because they have spent so much time closely monitoring the child's symptoms and behaviors in an effort to prevent hypoglycemia.
Disease duration predicted two PDOS scale scores: Divine Intervention and Attitudes Toward Medical Staff. The longer the child had diabetes, the less likely the mother was to view the disease as a religious test. In our clinical experience, some parents initially react to the news of diabetes diagnosis with efforts to seek God's intervention to take away the disease. Or, they may see diabetes as a religious test; with sufficient faith, the disease will go away. The medical staff works to explain to the parent that diabetes is a lifelong disease. As the parent and family adapt to the disease, most parents are able to accommodate their religious convictions and accept their child's diabetes as a chronic disease for which there is currently no cure.
Longer disease duration was also associated with more positive maternal attitudes toward medical staff. At the time of diagnosis, there is so much demanded of the child and parent that mothers may feel overwhelmed. As they learn to live with the disease and become more familiar with the particular communication style of their child's caretaker, they may come to view the medical staff in a more favorable light. Attitudes Toward Medical Staff was the only attitude scale that exhibited effects for two of the three variables of interest: current age and disease duration. Mothers of older children and mothers of children who had the disease longer viewed the medical staff more positively.
Certainly, small sample sizes and samples with little or no variability do
not lend themselves well to regression methods. Also, care must be taken to
test for nonlinear effects. Study design is often the best way to tease out
current age, onset age, and disease duration effects; investigators can
sometimes elucidate the effects of one of these variables by controlling for
the other two using careful subject selection criteria (e.g.,
Lockwood et al., 1999).
Longitudinal studies may be necessary for a full understanding of disease
duration effects. Nevertheless, the methodology presented here appears to be
one useful way to disentangle the effects of current age, onset age, and
disease duration in cross-sectional data. Each was related to parent and child
attitudes toward diabetes in different ways. Although the findings are of
interest in their own right, the approach may prove useful for any chronically
ill childhood population that varies in child onset age.
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Acknowledgments |
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This study was supported by National Institutes of Health Grant R01 HD13820. We thank the children and their families who participated in this research.
Received December 9, 1999; revision received January 11, 2001; accepted February 1, 2001
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