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CHILDREN’S HEALTH CARE, 35(1), 29–45
Copyright © 2006, Lawrence Erlbaum Associates, Inc.
Utilizing Computerized Phone Diary
Procedures to Assess Health Behaviors
in Family and Social Contexts
Avani C. Modi
Division of Psychology
Cincinnati Children’s Hospital
Alexandra L. Quittner
Department of Psychology
University of Miami
The purpose of this study was to illustrate how the daily phone diary (DPD) can be
used to measure adherence behaviors in 2 pediatric pulmonary populations, cystic
fibrosis (CF; n=31) and asthma (n=30). Computerized phone interview data was
used to conduct activity pattern analyses, which revealed that parents of children
with CF spent significantly more time in medical care and less time in recreation.
Reasonable agreement was found for adherence rates between the DPD and elec-
tronic monitors. The DPD was also able to identify barriers to adherence, which
included oppositional behaviors, forgetting, and competing activities. Overall, these
data suggested that the DPD holds promise for measuring adherence behaviors
within the family context.
There is growing recognition that the assessment of daily activities and experi-
ences provides a unique and meaningful way to assess how individuals are func-
tioning and feeling (Kahneman, Krueger, Schkade, Schwarz, & Stone, 2004).
This tradition of activity pattern analysis can be traced back several decades to
rehabilitation psychology (Margalit, 1984; Rock, Fordyce, Brockway, Bergman, &
Spengler, 1984) but has only recently been utilized more broadly by health
Correspondence should be sent to Avani Modi, Cincinnati Children’s Hospital Medical Center,
3333 Burnet Avenue—MLC 3015, Cincinnati, OH–45229. E-mail: avani.modi@cchmc.org
psychologists, sociologists, and economists. Advances in microchip technology
(e.g., PalmPilots) have made it possible to collect data from individuals in “real
time” on the activities they are engaged in, the frequency and intensity of stres-
sors, and ratings of mood that have spurred new interest in this area (Collins,
Kashdan, & Gollnisch, 2003; Stone et al., 1998).
Several new methods of data collection have been developed, including the
experience sampling method (Csikszentmihalyi & Larson, 1987), ecological
momentary assessment (EMA; Stone & Shiffman, 1994), and, more recently, the
day reconstruction method (Kahenman et al., 2004). These assessment techniques
have been used to evaluate a wide range of behaviors, physiological events, emo-
tions, and social contexts. For example, the experience sampling method has
utilized electronic pagers to randomly elicit affect and arousal as individuals per-
form their daily activities. These methods have provided rich descriptions of
“optimal experience” for adolescents and adults (Csikszentmihalyi, Larson, &
Prescott, 1977; Csikszentmihalyi & LeFevre, 1989; Massimini, Csikszentmihalyi, &
Carli, 1987). Schiffman et al. (2002) developed EMA, which utilizes handheld
computers to record the use of cigarettes and antecedents of smoking behaviors.
EMA methods have been useful in identifying the social and biological triggers of
smoking following an intervention (Schiffman et al., 2002). EMA has also used
preprogrammed wristwatches to assess mood, pain, and disability for patients with
arthritis (Stone, Broderick, Porter, & Kaell, 1997). Finally, day reconstruction
methods facilitate recall of activities of the previous day by constructing a diary,
which assesses the contributions of circumstances, personality characteristics, and
affective experience to life satisfaction (Kahenman et al., 2004). In a similar tradi-
tion, we have developed a computerized daily phone diary (DPD) procedure, which
tracks activities, companions, and mood over the previous 24 hr (Quittner &
Opipari, 1994; Quittner, Opipari, Regoli, Jacobsen, & Eigen, 1992). The purpose of
this study was to illustrate how the DPD can be used to measure activity patterns
and adherence behaviors in two pediatric chronic illness populations.
These new measurement techniques hold distinct advantages over more global,
self-report measures. First, they reduce biases associated with memory and recall
because the assessment is done in real time or within a 24-hr period. Second, they
locate the measurement of experience and affect within the social and interpersonal
contexts in which they occur, yielding information about the key role these contex-
tual influences play (Quittner, DiGirolamo, Michel, & Eigen, 1992). For example,
urges to smoke may be driven by cues in the social environment (e.g., drinking in a
bar; Schiffman et al., 2002), pain symptoms may be more pronounced at the end of
a long day of activity, and adherence to medical regimens may be optimal when
parental support for these behaviors is present (Quittner, Espelage, Ievers-Landis, &
Drotar, 2000). Finally, these assessment methods capture the rich, sequential
processes that influence behavior and affect, which can increase our understanding
of the phenomena and illuminate targets for intervention.
30 MODI AND QUITTNER
Over the past 10 years, we have been working on the development of a
computerized phone diary technique that uses a cued recall procedure to track
activities, companions, and emotions occurring over the previous 24 hr (Quittner &
Opipari, 1994; Quittner, Opipari, et al., 1992) The DPD shares many of the advan-
tages of the measures described previously but is decidedly more “low tech,”
using the telephone and a trained interviewer to complete the procedure. The
interviewer initiates the call using a series of standardized prompts and enters
data in real time into a computerized tracking system. A computer screen is
completed for each activity, recording its type, duration, mood during the activity,
and companions. It takes approximately 15 to 20 min to complete.
The DPD has been used to assess a variety of behaviors and interactions, including
(a) extent of parental time, attention, and affection directed to siblings with and with-
out a chronic illness (Quittner & Opipari, 1994); (b) activity and recreational patterns
in families caring for children with and without a chronic illness (Quittner, Opipari,
et al., 1992); and (c) role strain and depression related to caregiving for couples of
young children with cystic fibrosis (CF; Quittner, Espelage, Opipari, Carter, & Eigen,
1998). More recently, we have used the DPD to assess adherence to medical regimens
in children with chronic pulmonary conditions (Modi et al., 2006; Quittner, Espelage,
et al., 2000). To date, the DPD has been used exclusively with CF samples, and one
important objective of this study was to determine whether the DPD could be applied
to a different pediatric chronic illness population (i.e., asthma).
Adherence to medical regimens in children with CF and asthma is poor and
often associated with increased morbidity and mortality (Bauman et al., 2002;
Warwick & Hansen, 1991; Weiss, Gergen, & Hodgson, 1992). Adherence rates
range from 40% to 47% for airway clearance (Quittner, Drotar, et al., 2000; Passero,
Remor, & Solomon, 1981) and 16% to 20% for dietary recommendation in CF
(Anthony, Paxon, Bines, & Phelan, 1999; Passero et al., 1981; Stark, Jelalian, &
Miller, 1995). Adherence rates for inhaled medications in asthma range from 46%
to 58% (Bender et al., 2000; Walders, Kopel, Koinis-Mitchell, & McQuaid, 2005).
Given the complexity and burdensome nature of the CF regimen (average of 7.1
treatments taking 1–2 hr) compared to asthma (average of 3.5 treatments taking 15
min; Modi & Quittner, in press), it is likely that patients with CF spend more time in
treatment each day and less time in other activities (e.g., recreation).
Measurement of adherence behaviors has proved challenging (Rapoff, 1999).
Self-report questionnaires, the most commonly used assessment method, are
quick and inexpensive but have consistently yielded inflated rates of adherence
across a variety of medical populations and respondents (Bender et al., 2000;
Burkhart, Dunbar-Jacob, & Rohay, 2001; Quittner, Espelage, et al., 2000). Electronic
monitors, which utilize microchip technologies to record dates and times, can be
attached to pill bottles, metered dose inhalers, nebulizers, and glucometers and
provide a more objective assessment of adherence. Electronic devices have been
considered the “gold standard” measure of adherence, but they also have significant
COMPUTERIZED PHONE DIARY METHODS 31
limitations, including their considerable expense, mechanical breakdowns, and
applicability to a limited number of adherence behaviors (see Quittner, Espelage,
et al., 2000, and Riekert & Rand, 2002, for recent reviews).
Diary methods hold considerable promise for measuring adherence behaviors
and offer some unique advantages over the methods described previously. First,
the DPD assesses activities, companions, and mood ratings for all experiences
lasting 5 min or longer; however, the method itself does not reveal which activi-
ties are retrieved for analysis. Thus, it serves as an unobtrusive measure of behav-
iors related to medical adherence. Second, the DPD reduces problems with
memory and recall because the respondent reports only on activities that have
occurred over the past 24 hr. Third, because it records a continuous stream of
activities and behaviors throughout the day and evening, it can be used to identify
when medical treatments were missed and which activities were performed
instead. Thus, both the rate of adherence and barriers to adherence are measured
(Modi & Quittner, in press). To date, few studies have examined barriers to adher-
ence in pediatric chronic illness populations. Finally, the DPD is more cost-effective
than EMA, the experience sampling method, and electronic monitors.
The overall purpose of this study was to illustrate how the DPD can be used to
assess activity patterns and adherence behaviors within the social and family con-
texts in two pediatric pulmonary populations, CF and asthma. The first objective
of the study was to examine activity patterns in these two populations, assessing
how much time was spent in medical care and other activities, such as recreation,
as well as the relations among activities, social support, and mood. Based on prior
studies with patients with CF and healthy controls (Quittner et al., 1998; Quittner,
Opipari, et al., 1992), it was hypothesized that families of children with CF would
spend more time in medical care and less time in recreational activities than
families of children with asthma due to the complexity and time-intensive nature
of the CF regimen. The second objective was to assess mood during specific
activities. It was expected that parents would report lower mood ratings during
medical treatment and higher mood ratings during recreational activities. Next,
we examined convergence between rates of adherence generated by the DPD and
electronic monitors. Good agreement was expected between these measures.
Finally, we illustrated how the DPD can be used to identify barriers to adherence
and include a case example documenting this process.
METHOD
Participants
Study participants were recruited from two pediatric pulmonary clinics in Florida
and included 61 children with a primary diagnosis of CF (n=31) or asthma
(n=30) and their parents. Eligibility criteria for children included (a) age
32 MODI AND QUITTNER
between 6 and 13 years, (b) a proven diagnosis of CF or asthma for more than
1 year, and (c) no major comorbid medical diagnoses (e.g., cerebral palsy, can-
cer). Forty-six children with CF were approached to participate in the study, and
6 families refused to be in the study because of busy schedules. Of the initial
group who agreed to participate (n=40), 5 children dropped out of the study, 3
children had missing DPD data, and 2 children were siblings, resulting in a final
sample of 31 families of children with CF. Forty-nine children with asthma were
approached to participate in the study, and 9 families refused to be in the study
due to busy schedules. Of the initial group who agreed to participate (n=40),
7 children dropped out of the study, 1 child did not return for follow-up medical
visits, 1 child had missing DPD data, and 1 child was a sibling, resulting in a
sample of 30 families of children with asthma. Chi-square and ttests revealed no
significant differences in race, gender, age, and pulmonary functioning between
those who participated and those who dropped out or had missing data.
Mean age of participants with CF was 10.2 (SD =2.6), and 42% were female.
Average forced expiratory volume in 1 sec and force expiratory flow25 – 75, measures
of pulmonary functioning, were 79.5% (SD =21.2) and 70.7 (SD =32.5), respec-
tively. Mean age of primary caregivers was 40.4 (SD =7.3), 72% were mothers, and
74% were married. Ninety-one percent of the caregivers were Caucasian, 3% African
American, 3% Hispanic, and 3% biracial. Seventy-four percent of the primary care-
givers reported working outside of the home, and of those, 71% worked
full-time. Median family income for the CF sample was $30,000 to $49,999.
Mean age of participants with asthma was 9.9 (SD =1.7), and 33% were
female. Average forced expiratory volume in 1 sec and force expiratory flow25 – 75
for the sample was 91.0% (SD =20.4) and 74.7 (SD =31.2), respectively. Mean
age of primary caregivers was 36.6 (SD =7.5), 93% were mothers, and 60% were
married. Forty-five percent of the caregivers were Caucasian, 45% African
American, 7% Hispanic, and 3% American Indian/Eskimo. Sixty percent of pri-
mary caregivers were married. Sixty-two percent of primary caregivers reported
working outside of the home, and of those, 67% worked full time. Median family
income for the asthma sample was $20,000 to $29,999.
Significant differences between the groups were found for race and pulmonary
functioning. As expected, children with CF had lower pulmonary functioning
scores, t(55) =−2.1, p<.05, and a greater proportion of children in the asthma
group were from minority groups, χ2(4, N=60) =18.1, p<.001. No significant
associations were found between gender and time spent in activities for parents of
children with CF and asthma.
Procedure
The protocol and consent forms were approved by the appropriate Institutional
Review Boards. Eligible families were mailed an information letter and brochure
about the study. During a routine clinic visit, participants were approached by a
COMPUTERIZED PHONE DIARY METHODS 33
34 MODI AND QUITTNER
member of the research team to answer questions about the study and obtain
consent and assent. After obtaining consent, primary caregivers participated in a
clinical interview with trained graduate students or research assistants and then
completed several questionnaires. To decrease social desirability responding, par-
ticipants were told that information from the interviews would not be shared with
the health care team. Pulmonary function tests were also conducted to assess the
health status of the child at each visit. DPDs were conducted 1 month after their
clinic visit. Participants were offered a $5 gift certificate to local stores for partici-
pating in the study, $10 for completing a set of phone diaries, and $10 gift certifi-
cates for returning electronic monitors.
Measures
Background information form.
Parents completed a background informa-
tion form at the initial visit that asked about child’s date of birth, gender, parent’s
age, socioeconomic status, occupation, and composition of the family.
Information about the child’s medical history was also collected from the parent,
including date of diagnosis, presence of siblings with chronic illnesses, and
comorbid diagnoses.
DPD.
The DPD uses a cued recall procedure to track parents through their
activities over the past 24 hr and provides a fine-grained analysis of activity pat-
terns, companions, and mood (Quittner & Opipari, 1994; Quittner, Opipari, et al.,
1992). For all activities lasting 5 min or longer, mothers reported the type of
activity, duration, and who was present. The interviewer assisted each mother in
reconstructing her day as accurately as possible by providing prompts, such as the
time of day or information about the previous activity (“After you finished dinner,
what did you do next?”). Each activity was recorded by the interviewer on a com-
puter screen with clock hands that rotate through a 24-hr clock, a set of activities,
companions, and a rating scale for mood ranging from 1 (extremely negative) to 5
(extremely positive). A set of two DPDs (1 weekday and 1 weekend day) was con-
ducted with the primary caretaker by phone. The 24-hr recall procedure was
adapted for use with parents of children with asthma. The DPD has yielded reli-
able stability coefficients over a 3-week period (rs =.61–.71, p<.01) and high
levels of interrater reliability (>90%) in a CF population (Quittner, Opipari,
et al., 1992). Furthermore, strong convergent validity was found for parental dif-
ferential treatment between the DPD and both home interview and nightly rating
scale measures for parents of toddlers (Quittner & Opipari, 1994). Similarly,
strong convergence (77%–80%; Quittner, Opipari, et al., 1992) was found for
daily routines between the DPD and the Self-Observation Report Technique
(Stephens, Norris-Baker, & Willems, 1983). Activity codes for the DPD are
presented in Table 1. Follow-up questions eliciting barriers to adherence were
asked after completion of the diary. Parents were asked to identify “what types of
things got in the way of doing treatments in the past 24 hours?”
Electronic monitoring.
Electronic monitoring provides an objective
method of assessing adherence. However, due to the high costs of these devices,
only the primary medications for CF and asthma were monitored. These included
nebulized medications for patients with CF and inhaled corticosteroids for
patients with asthma. Two monitors were used to assess use of nebulized medica-
tions: (a) an electronic monitor that connects the nebulizer plug to the electrical
outlet and records the date, time, and duration of use (Hill-Rom Services, Inc.)
and (b) the Halolite nebulizer, an adaptive aerosol deliver system (Nikander,
Arheden, Denyer, & Cobos, 2003) developed in the United Kingdom that
COMPUTERIZED PHONE DIARY METHODS 35
TABLE 1
Activity Code Definitions
Activity Definition
Basic child care Meeting the basic physical needs of the child (e.g., putting to bed,
dressing) and facilitating child activities (e.g., driving to activities
or school)
Medical care Caring for the child’s health, including disease-specific treatment
regiment (e.g., inhalers, nebulizers), attending physician or clinic
visits, and general health concerns (e.g., well visits, immunizations)
Household tasks Engaging in general household chores, including cleaning, yardwork,
laundry, and grocery shopping
Meals Preparing and consuming food (e.g., making dinner, fixing snacks,
eating lunch)
Recreation at home Engaging in leisure, relaxation, or social activities inside the home
(e.g., reading, watching TV or movie, having friends over)
Recreation outside the home Engaging in leisure, relaxation, or social activities outside of the
home (e.g., going to mall, movie theater, visiting friends and family)
Work or attending school Engaging in paid employment in or outside of the home (e.g., driving
to and from work, time at work)
Self-care Caring for one’s own physical needs, including bathing, dressing,
and personal hygiene
Sleeping or resting Engaging in naps or sleeping at bedtime
Other Includes all activities not encompassed in previous categories,
including time spent doing the DPD or one-time activities
(e.g., wrapping gifts for a party)
Note. DPD =daily phone diary.
includes a microchip that can be downloaded in the clinic (Profile Therapeutics/
Medic-Aid Limited, West Sussex, United Kingdom).
For children with asthma, inhaled corticosteroids were assessed using the
MDILog II®. This device was developed by Westmed, Inc. and records the date
and time inhaled medications (e.g., bronchodilators and corticosteroids) were
taken, whether the canister was shaken, and whether the medication was properly
inhaled. These data were downloaded to a central docking station via computer.
The Advair©discus is equipped with a counter that identifies the dosages left in
the discus. This number was recorded at each assessment point. Two children in
this study utilized MDILog II and 8 children were prescribed the Advair discus.
Health status.
Pulmonary function tests are the gold standard for measur-
ing respiratory functioning and lung damage for patients with CF and asthma.
Average forced expiratory volume in 1 sec using the Knudson equations for age,
sex, and weight (Knudson, Slatin, Lebowitz, & Burrows, 1976) and force expira-
tory flow25 – 75 variability were conducted at the initial assessment visit in the
pulmonary function lab by a trained technician.
RESULTS
Analyses of Activity Patterns in Families of Children
with CF and Asthma
Weekday versus weekend diaries.
Prior to analyzing activity pattern dif-
ferences between the groups, time allocation for weekdays and weekend days was
compared using a multivariate analysis of variance on the total sample. Results
indicated significant differences between days, Wilks’s lambda =.74, F(10, 111)
=3.9, p<.0001, with post hoc tests revealing differences for work time, t(120) =
–3.3, p<.001, recreation outside of the home, t(120) =3.7, p<.001, and recre-
ation inside the home, t(120) =2.1, p<.05. Specifically, parents spent more time
in recreation on the weekends, both in and outside of the home, and less time
working. Thus, separate analyses for weekday versus weekend activities were
conducted for all subsequent analyses.
Time in specific activities.
Parents caring for children with CF were
expected to spend more time in medical care activities and less time in recreation
than parents caring for a child with asthma. This hypothesis received strong sup-
port. A multivariate analysis of variance confirmed a significant difference
between the groups on weekdays, Wilks’s lambda =.74, F(10, 56) =1.9, p<.05.
Post hoc tests indicated differences for time spent in medical activities, t(65) =
2.8, p<.01, and recreation outside of the home, t(65) =–2.3, p<.05. Parents of
36 MODI AND QUITTNER
children with CF spent approximately 72 min on medical activities compared to
29 min for caregivers of children with asthma. Similarly, caregivers of children
with CF spent 43 min on recreational activities outside of the home compared to
144 min for caregivers of children with asthma (see Figure 1).
Similarly, differences between the groups were found for weekend activities.
A multivariate analysis of variance, Wilks’s lambda =.59, F(10, 44) =3.0, p<.01,
and post hoc tests revealed differences in time spent on medical activities, t(53) =
4.3, p<.001, with parents of children with CF spending significantly more time
doing medical treatment (64 min) than parents of children with asthma (12 min).
Daily activity patterns and social support for families classified as low or
high adherence.
To evaluate the relation between adherence, activity patterns,
and social support, rates of adherence on the DPD were averaged across all treat-
ment components for both patient groups. Next, a tertile split was conducted to
compare the low- and high-adherence groups. For the CF sample, adherence in the
low-adherence group (n=10) was 8% compared to 57% in the high-adherence
group (n=10). For the asthma sample, these rates were 8% (n=10) and 100%
(n=12), respectively. No significant differences were found in activity patterns for
parents of children with CF for weekdays, with the exception of the greater amount
of time spent in medical care (M=35 min vs. M=92 min, p<.05), which was used
to separate the low- and high-adherence groups. Parents in the low-adherence group
spent significantly less time in medical care and appeared to allocate their addi-
tional time across the full range of activities. However, for weekends, results
suggested that parents in the low-adherence group spent less time in medical
care (M=36 min vs. M=108 min, p<.01) and household tasks (M=99 min vs.
M=243 min, p<.05) and a trend suggesting more time working than parents in the
high-adherence group (M=256 min vs. M=30 min, p<.08). For the asthma sample,
the time difference in medical care for the low- versus high-adherence groups was
approximately 7 min. As a result, activity pattern differences could not be identified
and further analyses were not conducted.
Finally, analyses of time spent with different companions (e.g., spouse, siblings,
friends/relatives) were conducted to determine whether parents of children with CF
in the low- and high-adherence groups differed in terms of social support. Although
no statistically significant differences were found for time spent with companions, a
trend suggested that parents of children with CF in the high-adherence group spent
three times the amount of time with friends and relatives compared to those in the
low-adherence group on weekdays (41 min vs. 125 min, p<.08).
Social Support
Social support during daily activities was measured through the DPD by calculating
the time spent with different companions, including the child with CF or asthma,
COMPUTERIZED PHONE DIARY METHODS 37
FIGURE 1 Weekday activity patterns. Note: Significance based on follow-up analyses of variance (*p<.05. **p<.01).
38
COMPUTERIZED PHONE DIARY METHODS 39
spouse, siblings, and friend or relatives. One comparison was made across all activi-
ties, and one comparison was made for recreation time. No significant differences
were found for time spent with companions collapsing across all activity types for
both weekday and weekends. In fact, the similarities in time spent with various
companions across the CF and asthma group were striking (see Table 2). However,
when examining recreational activities, parents in the CF group spent significantly
less time with their child during weekdays than parents in the asthma group (59.3
min vs. 121.3 min, p<.01), and, although not significant, a similar time difference
was observed for weekend days (185.2 min vs. 271.4 min). A trend also suggested
that parents in the CF group spent less time with friends and relatives compared to
parents of children with asthma on weekend days across all activities. This likely
represents the greater amount of time parents of children with CF must devote to
individual medical care (Quittner et al., 1998).
Mood Differences
Mood ratings and their association with specific activities were also examined
using the DPD across both days. It was hypothesized that parents would exhibit
TABLE 2
Group Differences in Time (Minutes) Spent With Companions
Weekdays Weekend
CF Asthma CF Asthma
Companion M SD M SD t M SD M SD t
All activities
Alone 979.7 224.8 1016.81 215.2 −0.69 883.3 197.7 851.9 254.6 0.51
Spouse 132.5 144.5 118.0 122.7 0.37 254.5 219.2 321.7 273.9 −0.84
CF/asthma child 323.2 201.0 305.5 169.3 0.39 441.9 198.5 445.0 266.8 −0.05
Siblings 288.8 244.7 268.8 209.6 0.33 341.1 220.5 345.0 223.1 −0.06
Friends or
relatives 74.3 110.7 74.0 119.8 0.01 56.2 97.2 103.5 157.1 −1.36
Recreation time
Alone 52.1 61.1 88.5 112.5 −1.61 84.6 100.8 67.4 107.3 0.61
Spouse 59.3 85.4 60.3 89.2 −0.04 144.5 153.0 190.3 191.5 −0.82
CF/asthma child 54.9 79.5 121.3 106.6 −2.92* 185.2 150.1 271.4 215.6 −1.73
Siblings 67.7 129.2 106.2 111.3 −1.19 178.0 151.6 198.1 161.4 −0.44
Friends or
relatives 33.9 58.5 48.2 89.4 −0.79 43.3 72.3 79.0 133.8 −1.21
Note. Participants who did not have a spouse or siblings were not included in those particular
analyses. CF =cystic fibrosis.
*p<.01.
40 MODI AND QUITTNER
lower mood for medical care and higher mood for recreational activities.
Within-subject analyses, using a one-way analysis of variance, indicated that
mood varied significantly by type of activity for parents in the CF group, F(7) =2.4,
p<.05. Specifically, parents reported higher mood ratings during recreation out-
side of the home (M=3.98) compared to most other activities, including basic
child care (M=3.74, p<.05), medical care (M=3.72, p<.05), household tasks
(M=3.64, p<.01), and self-care (M=3.66, p<.01). Recreation inside the home
(M=3.9) was also associated with better mood ratings than household tasks
(M=3.64, p<.05) and self-care (M=3.66, p<.05). Surprisingly, no significant
differences in mood were associated with activity type for parents of children
with asthma. This may reflect the much greater burden associated with CF versus
asthma care and the diminished opportunities these families have for recreation.
Convergence in Adherence Rates Between the
DPD and Electronic Monitoring
Rates of adherence were compared in a subset of patients with CF (n=8) and
asthma (n=10) for whom the DPD and electronic monitoring was available. Only
partial data were available, because not all patients had nebulized medications or
inhaled corticosteroids prescribed and several monitors failed to record data. In
the CF group, average rates of adherence (e.g., number of treatments performed
each day divided by the number of treatments prescribed) for nebulized medica-
tions, including bronchodilators, inhaled tobramycin, and rhDNAse, were 35%
for frequency of use and 33% for duration of use according to the DPD and
slightly higher for electronic monitoring, 48% for frequency and 52% for dura-
tion. Paired correlations between the DPD and electronic data for nebulized med-
ications were 0.94 for frequency (p<.001) and 0.88 for duration (p<.01),
suggesting reasonable agreement between these two measurement methods. For
children with asthma, average rates of adherence for inhaled corticosteroids were
76% for the DPD and 70% for electronic monitoring, with a paired correlation of
0.43 (p=.22), which shows a moderate association. These preliminary findings
indicate modest convergence between the DPD and two types of electronic
monitors across two different chronic disease groups.
Barriers to Adherence
Data on barriers to adherence were also collected from the DPD for a majority of
participants. For children with CF, barriers to airway clearance were measured,
and, for children with asthma, barriers to taking inhaled corticosteroids were
assessed. Across both days, 44% of parents of children with CF reported no barriers
COMPUTERIZED PHONE DIARY METHODS 41
to adherence for airway clearance. Those who identified barriers noted primary
barriers of oppositional behaviors, child fatigue, time management, and competi-
tion from other activities (e.g., camp, sports team). Similarly, across both days,
50% of parents of children with asthma reported no barriers to adherence for
inhaled corticosteroids. Of those who identified barriers, the primary barriers
included oppositional behaviors, forgetting, and competing activities.
Case example.
The DPD provides a unique method for determining, on an
individual level, which activities interfere with performing medical treatments on
a particular day. We selected 1 child who was highly adherent on the DPD at
Assessment 1 (e.g., averaged across 2 days, 1 weekday, and 1 weekend day; 75%
overall) but then reported poor adherence on the diary at Assessment 2 (8% over-
all). Examination of activity pattern data for these time points clearly showed that
at Assessment 2, the family spent more time in recreation, both in and out of the
home, and much less time on medical care, suggesting a clear change in the allo-
cation of activities away from medical care into recreation. These data highlight
how the DPD, unlike self-report measures, can be utilized to identify barriers to
adherence in an unobtrusive way for individual families.
DISCUSSION
These results highlight several potential uses for diary data collected through a
systematic, computerized telephone interview. Advantages of the diary include its
lower cost relative to electronic monitors and its ability to track the full range of
treatments. Electronic monitors, such as MDILogs and the Halolite nebulizer uti-
lized in this study, cost $180 to $200 each, following a negotiated research discount.
These devices are also frequently lost or broken resulting in replacement of 10% to
20%. In contrast, the cost of the DPD includes availability of a personal computer
or laptop, long-distance phone charges for a 15- to 20-min call, and the inter-
viewer’s time. We typically employed undergraduate and graduate student research
assistants at a cost of $8 to $10 an hour. In addition, the DPD allows tracking of the
full range of adherence behaviors. Patients with CF, for example, must substantially
increase their calorie intake and perform airway clearance two to three times per
day. At present, there are no electronic devices that can track these behaviors. Thus,
the DPD provides a more comprehensive evaluation of treatment regimens.
This is the first study of which we are aware that compares activity patterns in
two different pediatric chronic conditions. Analyses indicated that parents of chil-
dren with CF have less time for recreation than parents of children with asthma.
This is not surprising given the time and complexity of the CF regimen and is
consistent with prior studies using the DPD, which showed families of children
with CF had less time for recreation than healthy controls (Quittner, Opipan,
et al., 1992). More important, these studies also found that less time for recreation
was associated with marital role strain and depressive symptoms (Quittner et al.,
1998). The importance of recreation time was also highlighted in this study by its
positive association with better mood for parents of children with CF. Future stud-
ies with other pediatric chronic conditions that also involve a demanding medical
regimen, such as diabetes, should explore these important relations.
Given the challenges of adhering to chronic medical regimens, what activity pat-
terns characterized those families with high adherence? For families of children
with CF, there was a trend for better adherence to be associated with more time
spent with friends and extended family members. This type of social support may
be facilitative of these medical routines. Thus, social support provided by friends
and extended family, as well as opportunities for recreational activities, warrant
further investigation and are likely to be important targets for intervention.
Moderate convergence was found between rates of adherence measured using
the DPD and gold standard electronic monitors. In a subset of patients with CF
and asthma, both mean rates of adherence for nebulized medications and inhaled
corticosteroids and the paired correlations between the methods indicated reason-
able agreement. Although promising, this analysis could only be performed on a
small subset of patients.
Although the majority of studies of pediatric adherence suggest that fewer than
50% of treatments are completed (Rapoff, 1999), little research has investigated
the reasons for poor adherence (Modi & Quittner, in press). Surprisingly, nearly
half of the parents in this study could not identify any barriers to adherence. There
may be several reasons for this lack of awareness. First, families of children with
chronic medical conditions are not often asked directly about their adherence
with the prescribed regimen during clinic visits, and few systematic discussions
are initiated on this topic, either by the physician or other team members. In fact,
written treatment plans are rarely provided or reviewed. Second, conceptualizing
how time is allocated during the day and evening is a new concept for most
parents, and they may not be aware of the activities that frequently compete with
treatment time. In our experience, parents think in terms of tasks to be accom-
plished during the day but may not consider either the optimal ordering or dura-
tion of these activities. For children, it may be a question of preferring to go
outside to play, visit a friend, or participate on a sports team—all activities that
may interfere with treatment compliance. Social and recreational activities are
also important for the child and family’s adjustment, so rather than miss these
opportunities to normalize daily life, families may need help in negotiating when
and how to fit treatments into their busy schedules. Unlike other adherence mea-
sures, the DPD is the only method that can assess how the allocation of time to
activities may interfere with adherence to medical treatment. Future studies
should utilize this measurement approach to better identify barriers to adherence.
42 MODI AND QUITTNER
These results also suggest that the goal of identifying barriers to adherence is
an important one, because many of them are modifiable. In this study, barriers for
parents of children with CF and asthma were similar and included oppositional
behaviors, forgetting, and time management. In developing interventions, the first
step might include increasing the parent’s awareness of key barriers (“what is get-
ting in the way”), followed by instruction in effective strategies for overcoming
them (e.g., discipline strategies, memory aids).
Although this study is one of the first to examine activity patterns and
adherence behaviors in two pediatric pulmonary populations, it was limited in
several respects. First, this study was cross-sectional and further research is
needed to examine the stability of these patterns over time, in different devel-
opmental age groups, and in other pediatric chronic conditions. For example,
activity patterns, adherence behaviors, and barriers are likely to differ between
school-age children and adolescents, and it is not clear at what age the teen’s
diary rather than the parent’s will be most informative. Second, although the
diary has some strengths in terms of adherence measurement, it also poses
some significant challenges. These include the need for trained interviewers,
its limited usefulness for children under age 8, and its capture of a brief “snap-
shot” of these behaviors over 2 to 3 days. Electronic monitors, in contrast, pro-
vide an ongoing continuous stream of adherence data over relatively unlimited
time periods. Finally, the sample size for this study was small, and further
work is needed to replicate these findings. Overall, these data suggest that the
DPD holds promise for measuring adherence behaviors within the family con-
text. Translating these findings into practical interventions may be the most
important next step.
ACKNOWLEDGMENTS
This study was funded by the Agency for Health Care and Research Quality at the
National Institutes of Health (F31 H511768) awarded to the first author and
National Institutes of Health (HL69736) awarded to the second author. We extend
our deepest appreciation to the children with CF and asthma and their families
who participated in this study, as well as the research assistants who recruited
participants and collected the data.
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