Journal of Pediatric Psychology, Vol. 28, No. 5, 2003, pp. 363-373
© 2003 Society of Pediatric Psychology
Daily Stress and Mood and Their Association With Pain, Health-Care Use, and School Activity in Adolescents With Sickle Cell Disease
1 University of North Carolina–Chapel Hill, 2 East Carolina University
All correspondence should be sent to Karen M. Gil, PhD, Department of Psychology, Davie Hall, CB# 3270, University of North Carolina–Chapel Hill, Chapel Hill, North Carolina 27599–3270. E-mail: kgil{at}email.unc.edu.
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Abstract |
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Objective To determine the extent to which daily stress and mood are associated with pain, health-care use, and school activity in adolescents with sickle cell disease (SCD). Method Adolescents with SCD (n = 37; aged 13 to 17 years) completed daily diaries assessing pain, stress, mood, activity, and health-care use for up to 6 months. Multilevel modeling was used to analyze the data. Results Daily increases in stress and negative mood were associated with increases in same-day pain, health-care use, and reductions in school and social activity. Increases in positive mood were associated with decreases in pain, less health-care use, and more activity participation. Notably, pain was predictive of higher stress and lower positive mood on subsequent days. Conclusion Pain in adolescents with SCD is stressful and may lead to alterations in mood states. Understanding the way in which these variables relate to health-care use and activity may lead to improved pain management approaches.
Key words: sickle cell disease; diary; pain; adolescents.
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Introduction |
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TopAbstractIntroductionMethodDaily Diary of Pain,...Data Management and AnalysesResultsLagged Associations Between...Reverse RelationshipsDiscussionReferences |
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Recurrent pain from sickle cell disease (SCD) can be a significant and disabling problem (Ballas, 1998
). Recurrent pain can result in frequent and costly
health-care contacts and school or work absences, and may lead to depression
and other emotional problems, social isolation, and poor quality of life
(Brown, Doepke, & Kaslow,
1993; Midence & Elander,
1994). Moreover, research findings indicate that patients with
frequent painful episodes and frequent health-care use have the highest
mortality rate (Platt et al.,
1991).
The onset of pain in SCD is usually unpredictable. Dehydration, infection,
physical overexertion, and exposure to cold weather have been commonly
implicated as precipitants of vascular occlusion. However, the empirical
evidence to date suggests that most pain episodes are not preceded by an
obvious precipitating factor (Ballas,
1998).
Psychological stress has been implicated as a precipitating or exacerbating
factor in the course of a number of chronic illnesses, such as coronary heart
disease (Fontana, Kerns, Rosenberg, &
Colonese, 1989), pediatric rheumatic disease
(von Weiss et al., 2002), and
childhood diabetes (Brand, Johnson, &
Johnson, 1986). More recently, the critical influence of daily
fluctuations in stress on pain and other indices of disease expression has
been recognized. For example, stress has been associated with daily
fluctuations in pain in patients with fibromyalgia and rheumatoid arthritis
(Affleck, Tennen, Urrows, & Higgins,
1994; Stone, Broderick,
Porter, & Kaell, 1997). In children, researchers have shown
that increases in daily stress are significantly related to reports of fatigue
and stiffness in children with rheumatic disease
(Schanberg et al., 2000) and
to somatic symptoms in children with recurrent abdominal pain
(Walker, Garber, Smith, Van Slyke, &
Claar, 2001).
Although psychological stress has been implicated in the onset of painful
episodes in SCD, the earlier studies that supported this relationship relied
on retrospective and descriptive methods with very small samples
(Leavell & Ford, 1983;
Nadel & Portadin, 1977),
which make the findings less compelling. However, findings from two recent
studies provide more convincing support for the hypothesized relationship
between stress and pain in individuals with SCD. In a study of 52 adults,
Porter et al. (1998) found
that higher levels of daily stress as measured by a well-established indicator
of stress predicted pain severity on a prospective measure of daily pain.
Although interesting, this study was limited by a short monitoring period
(only 2 weeks) and the use of a retrospective stress measure. In a second
study (Porter et al., 2000),
adults with SCD tracked day-to-day fluctuations in stress and pain with
diaries completed over an average of about 90 days. In this study, Porter et
al. documented same-day associations between stress and pain and also found
that stress was associated with greater health-care and medication use on pain
days.
Beyond the role of stress in chronic illness, there is a growing body of
research that suggests that depressed mood is related to pain severity,
disease symptoms, and functional capacity in chronic illnesses other than SCD
(e.g., Affleck et al., 1994;
Walters & Williamson,
1999; Zautra, Burleson, Matt,
Roth, & Burrows, 1994). Evidence from our research program
supports the notion that clinical mood states such as depression may be
related to adjustment during SCD pain episodes
(Gil, Williams, Thompson, & Kinney,
1991; Thompson, Gil, Abrams,
& Phillips, 1992). Moreover, we have recently examined the
impact of common daily mood fluctuations (in contrast to clinical mood states)
on pain onset and course in adults (Porter
et al., 2000) and found that both positive and negative affect
were significantly related to same-day pain and interacted with pain to
predict health-care and medication use.
Despite the growing evidence that stress and mood play a role in the
fluctuating course of symptoms in chronic illnesses, almost no studies have
targeted adolescents with sickle cell disease. Adolescence may be a
particularly challenging developmental stage because it is a time during which
teenagers are making the transition to adulthood, which is marked by
physiological, personal, familial, and social maturation. This stage may be
particularly stressful for adolescents with SCD
(Treadwell & Gil, 1994)
because they deal with daily stress secondary to their illness as well as from
common everyday problems. Adolescents with SCD may be particularly vulnerable
to experience more negative mood states. Thus, it is possible that increased
daily stress and negative mood may lead to pain onset or make it even more
difficult to manage pain and illness. Conversely, a positive mood may serve to
offset negative consequences of illness symptoms.
The purpose of the present study was to analyze daily patterns of pain, stress, and mood in adolescents with SCD over several months. Specifically, we hypothesized that increased daily stress and negative mood measured prospectively by daily diaries would be associated with higher daily pain on the same day and on subsequent days. On the other hand, we hypothesized that increased positive mood would be associated with lower daily pain on the same day and on subsequent days. In addition, we hypothesized that pain as well as increased daily stress and negative mood on pain days would be associated with greater decreases in school activity and greater health-care utilization. Alternatively, increased positive mood on pain days would be associated with less activity reduction and fewer health-care contacts.
To accomplish the aims of the study, we utilized the daily diary method.
Daily diary methods have individuals track closely, as they happen under
naturalistic conditions, fluctuations in stress, mood, and pain. Diaries
provide useful information on patterns of pain and symptoms and may be more
accurate than hospital records about the duration, frequency, and severity of
illness events and health contacts (e.g.,
Norman, McFarlane, Streiner, & Neale,
1982). Dairies may be especially useful in understanding patterns
of SCD pain, since individuals with SCD often report mild to moderate pain
that is managed at home and not reported to health-care providers
(Gil et al., 2000;
Shapiro, Dinges, Orne, Ohene-Fremong,
& Orne, 1990). Moreover, diaries provide a more accurate
recording of particularly the temporal sequences of events, and thus provide
advantages when analyzing the links between stress, mood, and pain. Although
the use of home diaries to assess pain and other symptoms in SCD is not a new
method, prior studies that have included diaries to examine pain in
individuals with SCD have been primarily descriptive studies of pain course
and response (Fuggle, Shand, Gill, &
Davies, 1996; Gil et al.,
2000; Gill, Shand, Fuggle,
Dugan, & Davies, 1997; Shapiro et al.,
1990,
1995). In contrast, the
present study utilized daily diary methods to investigate the temporal link
between daily stress and moods and daily pain and pain response. Furthermore,
we incorporated the use of powerful, multilevel statistical analyses to
perform a more careful examination of the temporal sequencing of within-person
variables (Schwartz & Stone,
1998; West & Hepworth,
1991).
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Method |
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Participants and Setting
Participants were recruited from the University of North Carolina (UNC) and the East Carolina University sickle cell clinics. Patients were screened by their primary physician to determine participant phenotype and whether there were any medical contraindications for participation (e.g., neurological impairment). There are three major types of SCD: sickle cell anemia, or homozygous SS; hemoglobin SC disease; and sickle beta thalassemia syndromes. Phenotype was determined for participants using standard laboratory methods including hemoglobin electrophoresis. The sample was 37 adolescents (24 girls, 13 boys) in the age range of 13 to 17 (M = 14.8, SD = 1.4). Twenty-eight had sickle cell anemia, 6 had hemoglobin SC disease, and 3 had sickle beta thalassemia syndromes.
General Procedures
Institutional review boards (IRB) at UNC–Chapel Hill and East
Carolina University approved the study protocols. Informed consent was
obtained from participants and their caregivers according to IRB procedures.
During an initial evaluation, adolescents completed questionnaires assessing
baseline stress and psychological distress. After the initial evaluation,
participants entered the diary phase of the study for up to 6 months.
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Daily Diary of Pain, Health-Care Use, Activity, Stress, and Mood |
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TopAbstractIntroductionMethodDaily Diary of Pain,...Data Management and AnalysesResultsLagged Associations Between...Reverse RelationshipsDiscussionReferences |
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The daily diary was a simple form that adolescents completed each day. It was modeled after the diary used in our prior study of adults (Porter et al., 2000
).
Adolescents were trained in how to complete the diary by an investigator in
person who helped them to complete sample diaries. Each adolescent was given a
folder with personalized training materials to refer to, including definitions
for common SCD complications. Adolescents were given daily prompts to complete
the diaries by a programmable wristwatch and were provided with stamped
addressed envelopes in which to return diaries on a weekly basis. Weekly
telephone contact was maintained to reinforce diary completion and to answer
any questions.
Sickle Cell Disease Pain, Other Pain, and Health-Care Use
The first section of the diary asked about SCD pain and health-care use.
These questions were modified from the Structured Pain Interview and Daily
Self-Monitoring Record developed by Gil
(1994). Participants were
asked if they had SCD pain today that was located anywhere in the body and
that had no known cause other than SCD. They then rated their average pain
level for the day on a 100 mm visual analogue scale (VAS). A pain day
was defined for the analyses as any day on which the child reported
"yes" to the question "Are you having an episode of sickle
cell pain today?" Adolescents were also asked to indicate pain duration,
whether they called or visited their doctor, went to the emergency room (ER),
were admitted to the hospital, or took prescription medication. Reliability
and validity of the items have been reported in studies of children and
adolescents with SCD (e.g., Gil et al.,
1991,
1993,
2000). The items were found to
have satisfactory test-retest reliability and adequate interrater reliability.
Positive correlations were found between health-care use data obtained from
this self-report format and documented health-care contacts recorded in the
medical record.
For this study, adolescents were also asked whether they experienced any pain other than SCD pain, such as headache or menstrual pain for girls. First, they responded to the question "Did you experience other pain today unrelated to SCD?" If "yes," the adolescent was asked to describe the nature of the pain and then rate the average other pain level for the day on a 100 mm VAS similar to the one described above.
School and Other Activities
To assess daily activity, adolescents were asked whether, on that day, they
(1) stayed home from school, (2) participated in extracurricular or
after-school activities, and (3) completed household chores. There is
considerable variability among SCD children in their ability to continue
school activity during painful episodes (e.g.,
Shapiro et al., 1995).
Children often miss school and withdraw from peer activities due to SCD pain,
and prior research has shown that activity reduction is an important measure
of response to chronic pain conditions (e.g.,
Gil et al., 2000;
Walters & Williamson,
1999).
Stress
The second section contained an assessment of daily stress based upon the
approach used by Stone and colleagues (Stone & Neale,
1982,
1984;
Stone et al., 1997) and
similar to that used in our prior research with adults
(Porter et al., 2000). As part
of the initial diary completion training session, adolescents were given a
list of daily stressors. However, rather than complete the checklist each day,
they were asked to use it as a guide for the range of potential stressors.
Each day, they were asked to rate the perceived level of overall stress of the
day on a 100 mm VAS anchored at not at all stressful and as
stressful as I can imagine. They were asked to describe what situations
they were dealing with that day, to identify the most stressful situation, and
to select one of six categories that best described it: school, family,
boyfriend/girlfriend, other friends or other relationships, sickle cell
disease, or other.
Mood
The final section of the diary consisted of the daily mood scale developed
by Diener and Emmons (Diener & Emmons,
1985; Emmons & Diener,
1985). The mood scale assessed two dimensions of
affect—positive affect (PA) and negative affect (NA)—by asking
participants to rate the degree to which they felt various mood states that
sampled these two overall domains of affect (PA = happy, enjoyment/fun,
joyful, pleased; NA = depressed/blue, unhappy, angry/hostile, frustrated,
worried/anxious). Adolescents rated each mood each day on a 6-point scale from
not at all to extremely. Composite scores for PA and NA were
obtained using the procedures described in Diener and Emmons; that is, the sum
score of PA items was computed creating the positive mood variable and the sum
score for the NA items was computed creating the negative mood variable. This
mood scale has shown adequate reliability and validity in daily diary studies
with college students (Diener & Emmons,
1985; Emmons & Diener,
1985) as well as utility in examining the relationships between
stress, pain, and mood in participants with pain
(Stone et al., 1997). To
examine the internal consistency of the scale with the adolescents in this
study, we calculated alpha coefficients and found that reliability for each
mood scale was high (alpha for PA = .92 and for NA = .88).
Enhancing Compliance With Diary Completion
In addition to keeping the diary brief and simple to complete, several
other strategies were in place to facilitate diary completion. First,
adolescents were provided with wristwatches that were preprogrammed to signal
them by a beep once at the end of each day as a reminder to complete the
diary. Second, adolescents received monetary incentives—$0.50 per day
for each completed diary with a bonus at the end of the week of $1.50 if all
diaries for that week were completed. Adolescents were given one stamped
addressed envelope for each week and asked to return the diaries by mail.
Third, participants were contacted by telephone once per week to provide
social reinforcement and encouragement for them to complete and mail in their
diaries. The telephone interviewer was trained to conduct a standard protocol.
First, the interviewer reported on the completeness of the diaries (e.g.,
"We have received your diaries from last week"). Second, the
interviewer answered any questions related to the recording procedures, such
as how to mark the VAS. Questions related to the disease or its management
were directed to appropriate personnel.
Baseline Evaluation of Stress and Psychological Adjustment
The main purpose for the initial evaluation was to compare diary data on
stress and psychological status to commonly used and standardized
questionnaires in order to verify the reliability and validity of these diary
measures.
Daily Hassles
The Adolescent Daily Hassles Scale
(Seidman et al., 1995) was
used as a baseline measure of daily hassles. This is a 28-item scale examining
daily hassles in areas including family, peers, school, neighborhood, and
resources. Adolescents rate each stressor on a 4-point rating scale (not a
hassle/hasn't happened in the past month to a very big hassle.
The daily hassles' cumulative severity score is the sum of the ratings. The
Adolescent Daily Hassles Scale is part of a comprehensive inventory, the
Adolescent Microsystems Scale, which examines social support, neighborhood
cohesion, and involvement in activities with families and friends and at
school (Seidman et al., 1995).
This baseline measure of daily hassles was selected for inclusion in the
present study since the Adolescent Microsystems Scale was normed on a large
sample of 998 African American, Latino, and white adolescents. The coefficient
alpha for the 28-item measure was .89
(Seidman et al., 1995).
Psychological Distress
Symptoms of psychological distress were assessed in adolescents using the
Symptom Checklist-90–Revised (SCL-90–R;
Derogatis, 1983). The
SCL-90–R measures psychological distress along nine dimensions:
somatization, obsessive compulsive, interpersonal sensitivity, depression,
anxiety, hostility, phobic anxiety, paranoid ideation, psychoticism, and other
dimensions of distress. The Global Severity Index (GSI) was used as the
summary score of psychological distress.
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Data Management and Analyses |
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Data were entered into Excel Spreadsheets for transport into SAS for Windows. The Windows applications of SAS have the specialized statistical procedures (e.g., PROC MIXED) necessary for analyzing multilevel data sets with repeated measures. All data were double entered and compared to eliminate any errors in data entry.
Testing the Study Hypotheses
In order to perform the main analyses of the daily diary data, we used
multilevel models for analyzing temporal data as outlined by Schwartz and
Stone (1998) and West and
Hepworth (1991). These
statistical methods accommodate the complexities of temporal data sets that
involve two components: sampling at the level of the person (between-person
factors) and sampling of the day-to-day changes in the within-person factors.
Such multilevel models offer a number of advantages that we were able to
exploit, including (1) their ability to examine the impact of within-person
factors such as stress and mood on fluctuations in dependent variables (e.g.,
pain), (2) methods for handling unequal numbers of observations for
participants, which is typically the case in daily diary studies, (3)
statistical strategies to control for missing data and serial dependency that
preclude any need to supply values for missed assessments (i.e., a
continuous-time autoregressive error structure; see
Schwartz & Stone, 1998),
and (4) correction strategies for the possible influence of relationships
between outcome variables and other within-person factors through the
employment of person-centered versions for each within-person predictor,
resulting in estimated effects that are entirely free from all between-person
variance (Schwartz & Stone,
1998). Another advantage of multilevel analyses is that the unit
of analysis is observations, in this case days, rather than persons
(Schwartz & Stone, 1998).
Thus, as is the case in many longitudinal design studies, the overall number
of participants might seem small, but the sample size can be offset by the
number of observations per participant. The use of multilevel modeling to
analyze the diary data provided adequate statistical power to detect
significant effects, since in the present study over 4,000 repeated
observations were used in the analyses.
All multilevel model analyses were generated using PROC MIXED in SAS
(SAS Institute, 1997).
Binomial models were applied where appropriate (i.e., health-care use and
activity outcomes). As recommended by Schwartz and Stone
(1998), to ensure that
coefficients for within-person predictors remained unbiased, each model
included the aggregated person-means corresponding to within-person diary
predictors as control variables (e.g., individuals' mean as well as day-to-day
levels of SCD pain). However, because results corresponding to these control
variables were not central to our hypotheses, only results for within-person
associations are reported herein.
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Results |
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TopAbstractIntroductionMethodDaily Diary of Pain,...Data Management and AnalysesResultsLagged Associations Between...Reverse RelationshipsDiscussionReferences |
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Diary Completion and Descriptive Diary Information
The 37 adolescents completed a total of 4,012 days out of a possible 5,276 days, representing a completion rate of 76%. On average, adolescents completed 108 diary days (range 20–197 days). Analyses of variance and regression analyses were conducted to examine associations between rates of diary completion and age, gender, and disease severity variables. A significant relationship was demonstrated for age, indicating that younger adolescents were more likely to complete their diaries, F(1, 35) = 4.04, p = 0.05.
Adolescents reported a mean pain rating of 40.8 (range = 6–86) and mean pain duration of 16.4 hours (range = 0.4–75 hours) on pain days. On pain days, adolescents reported a mean stress rating of 21.5 (SD = 22.8) compared with a mean of 10.5 (SD = 14.3) on nonpain days. Positive mood was lower (10.3 vs. 13.5) and negative mood higher (6.1 vs. 3.6) on pain and nonpain days, respectively.
During the study period, 43% (n = 16) of the adolescents had a sickle cell–related health-care contact. An analysis of type of contact indicated that 16% (n = 6) of the adolescents went to the ER, 19% (n = 7) were hospitalized, 32% (n = 12) visited their physician, and 32% (n = 12) made a telephone call to a health-care professional. Some adolescents had multiple contacts on the same day. Of the 31 participants who experienced pain during the study period (range 1–52 days), on average they went to the ER on 4% of pain days, they were in the hospital on 4% of pain days, they visited their physician on 6% of pain days, and they called their physician or other health-care professional on 3% of pain days. For 81% of the pain days, there were no health-care contacts. Adolescents reported using analgesic medication on 26% of pain days, and narcotic medication on 19% of pain days. Regarding activity, they stayed home from school on 13% of pain days and eliminated extracurricular activities on 10% of pain days and household chores on 18% of pain days. Thus, for a large proportion of days when adolescents had pain, they managed pain on their own without a health-care contact.
Comparison of Stress and Mood Diary Data With Baseline Summary
Measures
The correlation of cumulative severity scores from the Adolescent Daily
Hassle Scale to the overall mean daily stress level from the diaries was
r(37) = .39, p < .05. The correlation of the GSI from the
SCL-90–R to overall negative mood from the diaries was r(33) =
.43, p < .05; and to overall positive mood from the diaries,
r(33) = -.36, p < .05. Since the time frame referenced
for the summary measures (the prior week for the SCL-90–R and the prior
one-month period for the baseline hassle scale) was different from that of the
diary (that day), these modest yet significant correlations suggest
relationships between diary variables with summary measures that are in the
expected directions.
Same-Day Stress and Mood and Their Association With SCD Pain
Ratings
Multilevel random effects models were used in order to examine the
association between daily stress, mood, and reports of SCD pain levels. These
models indicated that on a day-to-day basis, increases in stress were
significantly associated with increases in pain (t = 10.07,
p < .0001). Multilevel random effects models were also used to
examine the association between daily mood and ratings of pain. Increases in
negative mood were significantly related to increases in pain (t =
8.55, p < .0001), while increases in positive mood were associated
with decreases in pain (t = -10.09, p < .0001; see
Table I). In all of these
same-day models, other pain significantly interacted with stress and
mood such that the combination of higher stress and higher other pain was
associated with increases in SCD pain, and the combination of higher levels of
negative mood and higher other pain was associated with increases in SCD pain.
Positive mood had an inverse relation such that the combination of high
positive mood and lower other pain was associated with lower levels of SCD
pain. When stress and negative and positive mood were entered in a single
simultaneous equation, stress (t = 7.23, p < .0001) and
positive mood (t = -5.99, p < .0001) continued to show
independent associations with pain, while the association between negative
mood and pain was no longer significant.
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Same-Day Stress, Mood, Pain, Activity, and Health-Care Use
As expected, adolescents' ratings of SCD pain were significantly and
positively associated with all same-day activity and health-care use variables
such that increases in pain were related to more school absences and
reductions in extracurricular activities and household chores (see
Table II). Regarding activity
reduction, increases in stress and negative mood were associated with more
school absences and reductions in activities, whereas increases in positive
mood were associated with fewer school absences and less reduction in
activities. Regarding health-care use, increases in negative mood were
associated with more doctor calls, clinic visits, and ER visits, whereas
increases in positive mood were associated with fewer doctor calls, clinic
visits, and ER visits. Increases in stress were associated with more frequent
ER visits. The patterns of relationships between stress and other health-care
use variables, and between mood and hospitalizations and prescription
medication use, were mostly nonsignificant and in one case (stress and
hospitalizations) not in the expected direction.
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In addition to SCD pain, other pain was also significantly associated with all heath-care use models except for hospitalizations. Other pain was associated with more doctor calls (B = 0.03, t = 4.85, p < .0001), more clinic visits (B = 0.03, t = 3.83, p < .0001), more ER visits (B = 0.05, t = 7.53, p < .0001), and greater prescription medication use (B = 0.02, t = 3.76, p < .001).
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Lagged Associations Between Stress, Mood, and SCD Pain Ratings |
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TopAbstractIntroductionMethodDaily Diary of Pain,...Data Management and AnalysesResultsLagged Associations Between...Reverse RelationshipsDiscussionReferences |
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In order to investigate whether stress and mood temporally preceded pain, we conducted exploratory analyses investigating the association between stress and pain ratings and between mood and pain ratings on the 2 immediately subsequent days, that is, on pain for the next day and for 2 days later. Most of these analyses were not significant or not in the expected direction. In other words, there was no evidence that higher levels of stress and negative mood predicted pain on the next 2 days, or that positive mood was protective.
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Reverse Relationships |
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TopAbstractIntroductionMethodDaily Diary of Pain,...Data Management and AnalysesResultsLagged Associations Between...Reverse RelationshipsDiscussionReferences |
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One issue that we are aware of is that the pain itself is stressful and may lead to alterations in mood states. Thus, pain on one day may lead to stress or negative mood on subsequent days. This possibility was tested by examining the relationship between daily pain and subsequent stress and mood using similar procedures as described above. Table III summarizes the results of these analyses. In all these models, SCD pain and other pain were significant predictors. SCD pain and other pain predicted higher levels of stress and lower levels of positive mood on the subsequent 2 days. SCD pain did not predict negative mood on subsequent days.
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Discussion |
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TopAbstractIntroductionMethodDaily Diary of Pain,...Data Management and AnalysesResultsLagged Associations Between...Reverse RelationshipsDiscussionReferences |
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Daily stress and mood were associated with fluctuations in same-day SCD pain in the present study. Increases in stress and negative mood on a daily basis were associated with increases in same-day pain, whereas increases in positive mood were associated with decreases in same-day pain. The findings provide empirical support for common clinical observations that variations in stress and mood seem related to pain in SCD. The results are important in that this is the first study to examine daily fluctuations in stress, mood, and pain in a prospective diary design with SCD adolescents. Moreover, the results suggest that as in other childhood chronic illnesses (e.g., Schanberg et al., 2000
;
Walker et al., 2001), daily
variation in stress and mood may be related to exacerbations in symptoms.
In the present study with adolescents, stress and mood did not predict
fluctuations in SCD pain on subsequent days. Thus, the hypothesis related to
the temporal precedence of stress and mood was not supported. To the contrary,
the reverse model analyses lend support to the alternative hypothesis that
adolescent SCD pain leads to increases in stress and changes in mood. Indeed,
increases in SCD pain and other pain were predictive of both increases in
stress and decreases in positive mood on the next day and 2 days later. Taken
together, these results support speculations that pain or disease symptoms
might be the initiating variable (e.g.,
Schanberg et al., 2000;
Walker et al., 2001). It is
also possible that there are bidirectional effects such that increases in pain
lead to fluctuations in stress and mood, which in turn lead to escalating
pain. For example, a child who wakes up with SCD pain may experience stress
and reductions in positive mood because of needing to miss school or go to the
doctor, or from the pain itself. Stress and mood changes may lead to more
perceived pain in an escalating cycle. Even if these bidirectional effects are
occurring on a daily basis, it appears that pain may be the more powerful
variable initiating the cycle of subsequent changes.
Several issues or study limitations need to be considered when interpreting
these results. First, as in other diary studies, there was a good deal of
missing data and variability in the number of days completed by each
adolescent in this study. Although the missing data were handled statistically
through the use of multilevel models, it is possible that there were
systematic influences to the pattern of missing data. Adolescents may have
been less likely to complete diaries on days when they were experiencing high
levels of pain. Indeed, in the present study, we found that pain was reported
on only 8% of days, and the typical duration of pain was less than a day
(about 16 hours). This pain rate is lower than reported in studies including
parent report of child SCD pain (12% to 30% of days;
Gil et al., 2000;
Gill et al., 1997) and in
prior studies of adults with SCD pain (67%;
Porter et al., 2000). Future
studies should attempt to assess the specific reasons for missing diary
information in order to analyze for any systematic influences
(Gil et al., 2000;
Porter et al, 2000). This is
especially important in that the failure to confirm the hypotheses related to
the temporal precedence of stress and mood may have been influenced by the
overall low rate of pain days. A second and related issue is that we used the
day itself as the unit of analysis. It may be that stress and mood have more
immediate effects on SCD pain, and thus our methods might have missed temporal
effects that were present. Others have argued that more frequent recordings
over the course of the day are needed to track the effects of events on
disease symptoms (e.g., Walker et al.,
2001). Future studies might ask adolescents to keep records at
several points during the day such as morning, after school, and bedtime, in
order to explore the possibility that there are more immediate effects of
stress and mood changes on SCD pain. Finally, since the current study suggests
that daily pain acts as an initiating factor in daily stress and mood
fluctuations, future diary studies should include sleep variables such as
sleep quality, since sleep may play a role in the pain-stress-mood cycle
(Barbarin, 1999).
Regarding activity level, there was an association of pain, stress, and
mood with same-day reductions in school attendance, extracurricular
activities, and completion of chores at home. Moreover, stress and negative
mood were associated with decreases in activity, whereas positive mood even on
pain days seemed to help children maintain school attendance and activity
participation. Understanding the way pain and psychological factors relate to
activity participation is important, since frequent school absences and
underinvolvement in other activities may lead to poor academic progress and
other social and emotional consequences, such as depression in children with
chronic illnesses (e.g., Brown et al.,
1993; Shapiro et al.,
1995; Walters &
Williamson, 1999). One potential issue to consider when
interpreting the activity findings is that only adolescent self-report on the
diary was used to determine activity reduction. We have some preliminary data
that adolescents and parents generally agree on reports of activity reduction
on daily diaries (Gil et al.,
2000), and other studies have found that adolescent and parent
ratings of activity restriction are highly correlated
(Walters & Williamson,
1999). Yet future studies should include school records and other
methods to corroborate adolescent reports of activity reduction.
Regarding same-day health-care use, pain was associated with telephone calls to doctors, clinic visits, hospitalizations, ER visits, and medication use. Fluctuations in stress and mood were associated with certain health-care contacts in adolescents (i.e., phone calls to doctors, clinic and ER visits), but not with hospitalizations or narcotic prescription use. Thus, stress and mood in adolescents may factor in health-care decisions for certain health-care contacts. However, SCD pain and perhaps unmeasured factors (e.g., parent stress and mood, health insurance) may be more important in predicting other aspects of health-care utilization.
The results of this study add support to the growing body of literature on
the utility of daily diaries as a strategy for children to track pain and
other disease symptoms on an ongoing basis under naturalistic conditions
(Schanberg et al., 2000;
Shapiro et al., 1995;
Walker et al., 2001). Although
completion rates were lower than with adults (86%;
Porter et al., 2000),
adolescents generally had relatively high completion rates (76%) even over an
extended period of time. The comparison of diary information to the baseline
measures suggests that the information gathered on diaries is reliable and
valid. Moreover, the diary method allows for an analysis of the temporal
sequencing of events (Stone & Neale,
1982; West & Hepworth,
1991). Thus, diaries may be useful in clinical practice in that
they provide a rich source of temporal information with only minimal time
needed for the child to complete the dairy. When an adolescent is seen in
clinic with pain, for example, the clinician might prescribe medication for it
and at the same time instruct the adolescent to track the pain, his/her
activity, and other relevant variables on a daily diary over the course of the
next days or weeks. Then, at a follow-up visit, the clinician could evaluate
the intensity and duration of pain and its impact on daily functioning, and
thereby evaluate the response to the medication. In a similar way, clinicians
might incorporate diaries in the evaluation of psychosocial interventions.
Previously, we have shown that diaries can be useful in analyzing the
day-to-day impact of a coping-skills practice on adjustment variables such as
school absence and health-care use (Gil et
al., 2001).
The results of this study have potential implications for the clinical
management of pain in adolescents with SCD. Pain in children is often
undertreated. In light of the finding that pain precedes stress and mood
changes and is associated with activity reduction, clinicians might consider
treating SCD pain more aggressively to preserve involvement in school and
social activity and minimize the impact on daily mood. To achieve optimal pain
management in adolescents with SCD, interventions might need to integrate
psychological and disease management approaches (i.e., instructions on
effective medication and health-care use strategies) with standard
pharmacologic management, since a comprehensive pain control protocol might
have larger and broader effects. Stress and mood management components may be
important enhancements to cognitive-behavioral pain management programs for
children with SCD (Gil et al.,
1997,
2001). Improved interventions
might actually help patients prevent pain, manage pain more effectively at
home, utilize health care more efficiently, and otherwise improve the quality
of their lives.
In conclusion, future studies are needed to extend this research to younger
children with SCD, as there is limited research looking at pain, stress, or
mood variables in children less than 7 years of age
(Fuggle et al., 1996;
Gil et al., 2000). By doing
so, researchers will be able to study the developmental progression of the
impact of these variables from childhood to adulthood, which could be
beneficial in identifying appropriate points of intervention. Moreover, future
studies are needed to evaluate the role of sleep, coping strategies, and other
relevant variables in daily pain.
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Acknowledgments |
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This research was supported by NIH Grant R01 HL62172. The authors express appreciation to all of the staff of the University of North Carolina Sickle Cell Center and East Carolina University Sickle Cell Center. We also thank Willona Stallings, Cindy Scipio, and Shawn Thompson for their assistance with data collection and management.
Received July 15, 2002; revision received September 9, 2002; accepted October 4, 2002
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