Journal of Pediatric Psychology, Vol. 26, No. 4, 2001, pp. 203-214
© 2001 Society of Pediatric Psychology
Multidimensional Assessment of Pain in Pediatric Sickle Cell Disease
1 Cincinnati Children's Hospital Medical Center, 2 University of Cincinnati College of Medicine
All correspondence should be sent to Scott W. Powers, Associate Professor of Pediatrics, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Division of Psychology, CH-1, Cincinnati, Ohio 45229-3039. E-mail: scottpowers{at}chmcc.org .
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Abstract |
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Objective: To conduct a multidimensional assessment of pain in children with sickle cell disease (SCD). Variables included parent and child reports of pain location and intensity, qualitative descriptors of pain, perceptions regarding the seriousness and severity of SCD, and environmental and emotional factors associated with pain.
Methods: We replicated previous SCD pain research and applied advanced assessment methodology and research design to a population of pediatric SCD patients and their caregivers.
Results: Convergence of data supports the utility of multidimensional pain assessment with parents and children with SCD. SCD pain is experienced as intense and severe in home and hospital environments.
Conclusions: Findings support including children as reporters in clinical assessment of SCD pain. Integration of assessment strategies into home-based pain management may improve health outcomes. Future research should target biobehavioral treatment for pediatric SCD pain.
Key words: pediatric pain; sickle cell disease; behavioral assessment; children; parents.
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Introduction |
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Sickle cell disease (SCD) refers to a group of genetic blood disorders that affects approximately one in every 650 African Americans (Thompson, Gustafson, & Ware, 1998
). The disease is characterized by abnormal hemoglobin
synthesis that results in the sickling (i.e., rigid crescent-shape) of red
blood cells. These "sickled" cells can produce vascular occlusions
resulting in both acute and chronic complications such as painful episodes,
cerebro-vascular attacks, chronic anemia, acute chest syndrome, growth
retardation, progressive deterioration of major organs, leg ulcers, and
aseptic necrosis of bone (Lemanek, Buckloh,
Woods, & Butler, 1995).
Recurrent, painful, vaso-occlusive episodes (i.e., pain crises) are the
hallmark of SCD (Shapiro,
1993). The pain associated with vaso-occlusive episodes is
unpredictable and varies in intensity, location, and duration across age,
genotype, and disease severity in affected individuals
(Shapiro, 1993). Some studies
suggest that sickle cell pain may affect children's psychological adjustment,
academic performance, and interpersonal functioning
(Thompson et al., 1998). For
example, findings indicate that children experiencing frequent absences from
school due to sickle cell pain (i.e., approximately 2 months per academic
year) are at risk for declines in academic performance and psychosocial
functioning (Shapiro et al.,
1995). Gil and colleagues
(1991,
1992,
1994,
1997) have shown that by
adolescence many children with SCD pain have developed ineffective coping
strategies that negatively affect adjustment and are resistant to change.
These data demonstrate that SCD pain is a significant biobehavioral stressor
and support the need for early and multidimensional assessment of the pain
experience for young children (7-12 years old) with SCD.
Previous investigations of SCD pain in the pediatric population, while few
in number, suggest that establishing a comprehensive assessment strategy is
the critical first step in developing effective clinical interventions
(Walco & Dampier, 1990).
Because misconceptions about pain and pain-related disease may lead to poor
coping and maladaptive behavior patterns
(Walco & Dampier, 1987),
assessments of the parents' and child's beliefs and understanding of SCD pain
are essential. A thorough approach to the assessment of pediatric SCD pain
requires evaluation of several self-reported cognitive, behavioral, and
medical factors (Thompson & Varni,
1986; Vinchinsky,
1991). Researchers have recognized that children can provide
accurate recall and descriptions of their pain
(McGrath, 1990; Ross &
Ross, 1984a,
1984b) and that the pain
experience of children with SCD can be measured reliably
(Walco & Dampier, 1990).
However, despite these findings, most of the available data describing
pediatric SCD have been primarily measured by parental or health professional
report, thus neglecting the child's perception of his or her pain. In
addition, previous assessment research
(Varni, Thompson, & Hanson,
1987; Walco & Dampier,
1990) is limited by the use of "convenience samples"
rather than using sampling techniques that allow for greater
representativeness and generalizability of the results (e.g., random sample
from an available population). Clearly, multidimensional pain assessment
research that includes the child's perspective on pain and coping and uses a
more robust research methodology is needed in order to gain a more thorough
understanding of children with SCD and their pain experience. We hope that
these improvements in SCD pain assessment will lead to advances in the
clinical treatment for this pediatric population.
The overall goals of this study were threefold: (1) to improve the research
methodology of earlier descriptive studies by employing random sampling
procedures, (2) to validate the assessment approach used in previous pediatric
pain research by performing a partial replication of the Walco and Dampier
(1990) SCD pain study, and (3)
to extend the SCD pain assessment literature by using a more comprehensive
assessment strategy that includes additional pain variables such as the
child's perspective on pain experience and interruptions in daily functioning.
The specific objectives of this study were to conduct a multidimensional,
systematic assessment of the following variables: (1) parent and child reports
of location and intensity of SCD pain; (2) parent and child reports of the
sensory, affective, and evaluative qualities of SCD pain; (3) parent and child
perceptions regarding the seriousness of sickle cell disease, severity of
sickle cell pain, and the impact of SCD pain on daily functioning; and (4)
parents' report on antecedents for pain and emotional factors associated with
children's experience of pain.
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Method |
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Participants
Participants were 25 children with sickle cell anemia (HbSS) (n = 17), sickle beta 0 thalassemia (HbSß° thal) (n = 1), sickle cell hemoglobin SC disease (HbSC) (n = 7), and their primary caregivers. Participants were recruited from a comprehensive sickle cell center (CSCC) at a large university children's hospital. The CSCC serves a representative population of families residing in a tri-state region in the midwestern United States. The sample was composed of 8 (32%) boys and 17 (68%) girls ranging in age from 7 to 12 years (M = 10.1 years, SD = 1.7; range: 7.2 to 12.8 years) with a mean grade level of 4.2 years (range: second to seventh grade) (see Table I for a summary of demographic data). Randomization failed to yield a representative sample for gender. All primary caregivers were the biological mothers with whom the children had lived during the past 12 months. The primary caregivers' average educational level was 12.1 years (SD = 1.88); 14 (56%) of the mothers were employed. All of the children and caregiver participants were African American. The study was approved by the institutional review board of the children's hospital where the project was conducted.
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Procedures
Participants were recruited from the CSCC patient list, which included all
children ages 7-12 years old with SCD (61 patients: HbSS [n = 38];
HbSß° thal [n = 1]; HbSC [n = 13];
HbSß+ thal [n = 9]) and their primary caregivers.
Genotypes HbSS, HbSß0 thal, and HbSC were included due to
their clinical severity, and HbSß+ thal was excluded given its
mild clinical severity (NIH,
1991); therefore, 52 families met inclusion criteria. Since the
research setting is the only in-patient pediatric facility in the region, the
recruitment pool represented nearly every case of pediatric SCD within the
catchment area. Families were informed of the study via a letter from the CSCC
medical director and a follow-up telephone call by the clinical social worker.
Of the 52 eligible families, 96% of the families (n = 50) agreed to
participate. One family could not be located after multiple attempts and one
family declined participation. After stratification by genotype, random
sampling (based upon a random numbers table) was used to select 25 families;
all 25 families (100%) agreed to participate and completed the
multidimensional assessment that was scheduled at a convenient time and
location for the family. Families were contacted 24 hours prior to the
appointment to assure that the child had not had a pain episode in the last
week and to determine if transportation or childcare assistance was needed.
After informed consent/assent was obtained from the caregiver and child,
assessments of parents and children were conducted separately by two trained
interviewers using a semi-structured interview format. All instruments were
read to the participants and responses audio taped. Interviews took
approximately 40 to 50 minutes to complete and each family received $20
compensation for their time. Twenty-four hours after the interview, a thank
you letter was sent to the caregiver and child.
Upon completion of data collection, audiotapes and data forms were assigned a four-digit family code. The project coordinator reviewed transcripts of audiotapes for accuracy. Three trained coders independently coded the content of data provided by parents and children for open-ended questions. Twenty percent of the interviews were randomly selected and checked for interrater agreement. Average percent agreement was over 90% for parent and child interview data.
Instruments
The five assessment measures included: the Parent Demographic Information
Form, the Parent Pain Interview Questionnaire, the Child Pain Interview
Questionnaire, the Parent Pain and Health Belief Questionnaire, and the Child
Pain and Health Belief Questionnaire.
Parent Demographic Information Form. The Parent Demographic Information Form was used to record the level of child and parent education, parent occupation, number of siblings, and number of individuals living in the household.
Parent and Child Pain Interview Questionnaires. The Parent and
Child Pain Interview Questionnaires included the Varni/Thompson Pediatric Pain
Questionnaire (PPQ) (Varni & Thompson,
1985) and structured interview questions from the pediatric pain
work of Ross and Ross (1988a,
1988b). The PPQ is a
comprehensive questionnaire that incorporates several different modalities to
assess pain. The questionnaire includes a visual analog scale (VAS), a 10 cm
horizontal line with no marks, which measures present pain, worst pain in the
past week, and worst pain managed at home and in the hospital. The PPQ also
includes a body diagram to identify pain sites and a list of descriptors
representing the sensory, affective, and evaluative qualities of pain. To gain
more specificity regarding qualitative aspects of pain, we asked parents to
describe pain managed at home and pain managed at the hospital. During the
pain assessment we discovered that children had difficulty differentiating
pain experienced in the hospital from pain experienced in the home. To assess
the child's perspective regarding their pain experience, we asked children
only to describe their pain experience at home because this was the most
familiar environmental context. Previous reports
(Varni et al., 1987;
Walco & Dampier, 1990) did
not ask respondents to consider a specific context for pain (i.e., home versus
hospital). In addition, the PPQ includes questions to assess the degree to
which SCD pain episodes interfere with daily functioning and circumstances
that may increase pain intensity. The PPQ (child/adolescent versions)
parallels specific items on the parent form for cross validation. The PPQ has
been demonstrated to be a reliable and valid measure among children with
juvenile rheumatoid arthritis (JRA) (Varni
et al., 1987), and prior data suggest criterion-reference validity
in the sickle cell population (Walco &
Dampier, 1990).
The Parent and Child Pain Interview Questionnaires were developed to
further evaluate children's and parents' perceptions of pain (i.e., knowledge
about sickle cell disease and pain, strategies to handle pain at home or
hospital). The questionnaires included a set of generative and
supplied-response questions to increase response validity and facilitate
children's confidence in responding to questions
(Ross & Ross, 1984b).
Test-retest reliability (96.9%) of the generative and supplied-response
question format has been reported in previous pediatric pain assessment
research (Ross & Ross,
1984a).
Parent and Child Pain and Health Belief Questionnaires. Both
parent and child versions of the Pain and Health Belief Questionnaire were
formulated using dimensions of the Health Belief Model, which provides a
framework to explain health and illness behavior actions
(Becker, 1974). As the health
belief literature for this population is scarce, other pediatric pain
literature and pain questionnaires were reviewed for content
(Lorig, Chastain, Ung, Shoor, & Holman,
1989; McGrath,
1987,
1990;
Turk, Meichenbaum, & Genest,
1983; Williams & Thorn,
1989). Dimensions in the Child and Parent Pain and Health Belief
Questionnaires include perceptions of severity and seriousness of sickle cell
disease and pain; perceptions of barriers to pain management; benefits of pain
management; and perceptions of ability to perform pain management. Both parent
and child questionnaires utilized a 5-point Likert scale format. Parallel
items were included in parent and child versions for cross validation. The
Parent Pain and Health Belief Questionnaire consists of 37 questions and the
Child Pain and Health Belief Questionnaire consists of 20 questions. Though
the reliability and validity of these questionnaires have not yet been
assessed, the content has been thoroughly reviewed by expert clinicians and
educators with extensive experience working with pediatric SCD (see
Malin, Asch, Kerr, & McGlynn,
2000, for an example of the use of expert panel review [i.e.,
"Delphi" or "Oracle" approach] in instrument
development).
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Results |
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Pain Loci
Parent and child self-report of pain sites using body diagrams from the PPQ are summarized in Table II. The number of pain sites reported by children in our sample ranged from 1 to 6 (M = 3.52, SD = 1.45). Parent reports also indicate a number of different pain sites for their children with SCD (range of sites = 1 to 7; M = 3.52, SD = 1.58). The leg was reported most frequently as a pain site by both parents (64%) and children (72%). Almost one-third or more (
28%) of the parents and children reported pain to occur in the
following body locations: arm, knee, stomach, and back. Less than one-fifth
(
20%) of the parents and children reported pain occurring in the following
sites: hands/fingers, shoulder, wrist, head, feet, and hip. In order to
examine concordance rates between parent and child responses for pain loci,
percent agreement ratios were calculated for all pain sites (range: 58.3% to
95.83%). Sites with lower concordance ratios (<70%; arm, knee, ankle,
elbow) were characterized by higher parent reporting for each site with the
exception of the "chest/ribs/side" site. Children endorsed notably
higher frequencies for pain occurring in the chest area.
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Pain Intensity/Visual Analog Scale (VAS)
Table III presents the
children's and parents' ratings of pain intensity. Our sample reported a range
of pain intensity from no pain at all to extremely high levels of pain
intensity. In order to evaluate concordance between parent and child reports,
we conducted statistical comparisons (between-groups t test) of pain
intensity ratings. No statistically significant difference was noted for worst
pain at home (t[47] =.421, p >.05; both children and
adolescent subjects) or average pain (t[14] = 1.34, p
>.05; only adolescent subjects). We also compared child and parent pain
intensity ratings to the pain intensity data presented by Walco and Dampier
(1990); no statistically
significant between group differences (t tests for unequal sample
sizes) were found for any of the pain variables.
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Sensory, Affective, and Evaluative Descriptors of Pain
The strategy used for classifying descriptors of pain as sensory,
affective, or evaluative was based on prior work
(Melzack, 1975;
Melzack & Torgerson,
1971). Table IV
presents comparative data for descriptor words as reported by Walco and
Dampier (1990).
"Aching" and "uncomfortable" emerged as the pain
descriptors commonly endorsed by all reporters (parents, adolescents,
children) in both studies. We also found other commonly reported descriptors
in our sample. Parents described children's pain at home as scared (66%),
fearful (58.3%), cruel (41.7%), stinging (41.7%), screaming (37.5%), and
lonely (33.3%). Children described pain at home as squeezing (32%), screaming
(32%), and punishing (32%). Parents described children's pain in the hospital
as fearful (76.2%), scared (61.9%), cruel (52.4%), screaming (47.6%), lonely
(42.9%), stabbing (38.1%), and pins and needles (38.1%). In this study,
parents endorsed, on average, 8.36 (sensory), 4.17 (affective), and 4.38
(evaluative) descriptors for home-based pain; children reported an average of
6.48 (sensory), 1.8 (affective), and 3.04 (evaluative) descriptors for
home-based pain. To examine concordance between parent and child reports for
these qualitative pain descriptors, we made statistical comparisons
(between-groups t test) for mean number of descriptors per category
for home-based pain. No statistically significant difference was found for
sensory pain descriptors (t[47] = 1.47, p >.05). However,
for both affective (t[47] = 4.15, p <.01) and evaluative
(t[47] = 2.19, p <.05) categories, parents endorsed
greater frequencies of pain words per category. For pain managed in the
hospital, parents reported an average of 8.08 (sensory), 4.33 (affective), and
4.81 (evaluative) words to qualitatively describe pain. Mean pain descriptors
per category as reported by Walco and Dampier
(1990) have been summarized in
Table IV. To examine these data
across studies, we conducted statistical procedures (between-groups t
test for unequal sample sizes) to compare pain descriptors endorsed in each of
the samples. No statistically significant differences were found with the
exception of parent reports for sensory pain descriptors. Parents in this
study endorsed higher frequencies of sensory words than parents in the Walco
and Dampier (1990) sample
(t[57] = 2.87, p <.05).
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Seriousness/Severity of Sickle Cell Disease and Sickle Cell Disease
Pain
Table V summarizes selected
data from the Child and Parent Health Belief Questionnaires. Specifically,
children and parents were asked regarding their perceptions of the severity
and seriousness of SCD and SCD pain. Only responses of certainty were
considered (Likert scale scores of 3 [not sure] were not included in frequency
calculations). Without exception, the majority (64%) of children and
parents considered SCD and SCD pain to be either a "serious/big"
or "very serious/very big" problem. Similarly, the majority
(50%) of children and parents worry "sometimes" or "a
lot" during a sickle cell pain crisis or about the possibility of future
pain episodes. Finally, over one-half (57%) of children and parents
reported being "somewhat" or "very" afraid that a
sickle cell pain crisis might result in the death of the child.
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Pain Triggers
Parents were also asked about whether specific situations or conditions may
precipitate their child's sickle cell pain. Environmental conditions (e.g.,
weather changes), physical conditions (e.g., exercise, overexertion),
infectious conditions (e.g., colds/flu), and emotional conditions (e.g.,
anxiety, anger, sadness) were antecedent conditions reported by 88%, 60%, 80%,
and 52% of the parents in our sample, respectively.
Pain and Emotion
Table VI lists the emotional
variables that parents reported as making their child's pain worse. Comparison
of the Walco and Dampier
(1990) data to our findings
indicates similarities in the rank order of emotional variables. In both
studies "tired" was the emotional variable most often reported to
make SCD pain seem worse, followed by upset, unhappy, angry, arguing, lonely,
anxious, bored, and happy. There was one exception, "busy" was the
emotional variable least reported in the previous study (9%), whereas it was
one of the more frequently reported variables in this study (40%). Despite the
similarities in rank order of the emotional variables, there were differences
between the studies with respect to the number of parents endorsing certain
emotional variables. For example, Walco and Dampier
(1990) reported that
"tired" was endorsed as an influential emotional variable by 71%
of parents, while in this study the same variable was endorsed by only 48% of
parents.
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Socioenvironmental Factors and Pain
Table VII presents data on
parents' and children's perceptions regarding the impact of SCD pain on
selected areas of daily functioning. As in the previous study, "disliked
activities" and "school attendance" were the activities most
often rated by parents as "always" (Likert scale score of 5) being
interrupted by SCD pain (i.e., child's pain interferes with activity).
Previous reports have not assessed children's perceptions of pain
interference. In this study the children were asked to indicate whether or not
(i.e., yes or no) they feel like engaging in specified activities when
experiencing pain at home. Eating (68%) and doing schoolwork (68%) were most
frequently rated as being disrupted by SCD pain. With the exception of
sleeping (16%) and watching television (20%), two passive activities endorsed
less frequently as disrupted activities, greater than one-third (36%) of
the children reported interference in daily functioning for each of the
activities assessed.
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Discussion |
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This study extends the empirical literature on pediatric sickle cell pain in three important ways. First, we used a more robust research methodology that allows greater representativeness and generalizability of the findings. Specifically, a random sample (without subject attrition or refusal to participate) was obtained from the population of children served by a medical center providing care for nearly all families with SCD in a large tri-state region. Second, replication of findings reported by Walco and Dampier (1990
), the only previously
published report using a multidimensional assessment of SCD pain in school age
children, further supports the validity of multidimensional pain assessment
(Varni & Thompson, 1985)
and lays the groundwork for clinical intervention with this population. Third,
novel findings supporting the validity of assessing children's perspectives
regarding the impact of SCD on daily functioning and both parents' and
children's perceptions about the seriousness and severity of pediatric SCD and
SCD pain provide directions for future research in SCD pain assessment and
treatment.
Four key areas of convergence were obtained through replication of an
earlier pediatric SCD assessment study
(Walco & Dampier, 1990).
First, VAS measures of pain intensity were similar for parents and children in
both studies. Specifically, mean pain intensity scores for all informants were
highest for "worst home pain" and "worst hospital
pain" when compared to "present pain" and "average
pain" ratings. Convergence of pain intensity scores was supported by the
lack of statistically significant between-group differences for both parents
and children across all pain intensity measures. Second, children and parents
across both investigations chose similar qualitative pain descriptors. For
example, physical sensation (i.e., "aching") and tolerability
(i.e., "uncomfortable") associated with pain episodes were
commonly endorsed. Convergence of pain descriptor data across studies was
supported through the lack of statistically significant between-group
differences for both parents and children in all categories with the exception
of parent report for sensory descriptors. Third, when parents were asked about
emotional variables that make their child's pain seem worse, parents in both
studies identified similar emotional variables (tired, upset, unhappy, angry).
Fourth, parents reported that SCD pain interferes with their child's daily
functioning; most parents in both studies endorsed "disliked
activities" and "school attendance" as always being
interrupted by SCD pain. The convergence of these data provides further
support for the validity and reliability of multidimensional assessment of SCD
pain.
A few findings inconsistent with Walco and Dampier's
(1990) data emerged. As
previously noted, the mean number of sensory descriptors as reported by
parents was significantly higher in this study. This finding suggests that the
parents in this study may perceive SCD pain as being more physically intense
than those parents in the previous study. An alternative explanation of this
finding may be a function of the higher educational level of these subjects
(M = 12.1 years); however, this cannot be confirmed due to the
unavailability of comparison demographic data. Further, it is possible that
having parents consider a specific context (home versus hospital) for pain may
have generated a greater response frequency. Given that families in this study
receive medical treatment in a comprehensive sickle cell center that
incorporates patient education into standard care, these parents may have an
increased knowledge of SCD and SCD pain. Such knowledge may lead to an
increased awareness of their child's pain experience. It also should be noted
that, on average, no differences were observed for qualitative descriptions of
pain and pain intensity as reported by parents for pain managed at home and in
the hospital. Our findings indicate that parents' perceptions of pain
intensity as severe hold, irrespective of the context for pain.
This study has a number of clinical implications. Specifically, support for
the use of the PPQ as a valid and reliable means of multidimensional pain
assessment could contribute to improvements in home-based care. Because
home-based pain is the most common context for pain
(Shapiro et al., 1995), the
VAS may have particular relevance for parents who could be taught how to
monitor pain levels using this instrument. Using pain assessment strategies in
conjunction with home-based pain management techniques may lead to an improved
sense of self-efficacy for the parent and child. Overall, findings suggesting
that children can describe their pain in terms of location, intensity, and its
impact on daily functioning support the importance of including children in
clinical assessments of pain. Obtaining such self-report measures from
children allows them to have a role in communicating about their illness while
providing valuable assessment data that will help the clinician tailor
treatment to the individual child. Additionally, convergence of parent and
child pain intensity data not only supports the reliability and validity of
the VAS as a measure of SCD pain but also supports the clinical utility of
gathering data across informants (parents and children) on the same clinical
variables. It is also important to consider this study's lack of convergence
between parents and children regarding the use of affective and evaluative
pain descriptors. The observation that parents in this study endorsed higher
frequencies of descriptors in each of these categories may indicate that
parents perceive SCD pain as being more emotionally laden and less tolerable
than their children with SCD. However, this finding could be interpreted to
suggest that the physical aspects of pain are more readily reported by
children while cognitive and emotional factors are not considered relevant.
Thus, clinical evaluation should be alert for discrepancies between parents
and children, particularly with respect to cognitive and affective
functioning.
Two novel findings that help elucidate discrepancies between parent and
child perceptions of pain have particular clinical relevance. First,
consistent with previous SCD pain literature
(NIH, 1991), children and
parents in this study indicated that the extremities and abdomen were the most
common pain sites. Not only were these sites endorsed most frequently by both
parents and children, they were characterized by high concordance rates
(>70%). There was a notable discrepancy between children and parents for
pain reported in the chest/rib area. Parents' lower reporting (compared to
children) of this pain site may suggest that they are unaware of important
aspects of their children's pain. This is significant due to the fact that
chest pain can be a symptom of acute chest syndrome, an acute illness that can
rapidly progress, and may be fatal. There were several other areas
characterized by lower concordance (<70%) between children and their
parents (e.g., arm, knee, ankle, elbow). For each of these body locations,
there were parents who endorsed them as pain loci in the absence of such an
endorsement by their children. This particular finding may suggest that
parents have a tendency to overreport the number of pain sites for their
children. However, the observation that a majority of the pain sites
characterized by lower concordance are joints lends support for an alternative
explanation. It is possible that children were less specific about reporting
pain localization; perhaps children provided more general body areas (e.g.,
arms, legs) that subsume more specific joints (e.g., wrist, knee). Hence, it
may be useful to teach parents to assess pain localization in their children
with SCD and to recognize the serious complications of painful episodes to
avoid delay in seeking treatment. Use of body diagrams as a means of assessing
pain location may be especially helpful to families when managing SCD pain at
home. Second, children were asked to report if SCD pain interfered with daily
functioning. Parents and children overwhelmingly indicated that SCD pain
disrupts social activities with friends and family and academic activities
including attending school and doing schoolwork. It is note-worthy that
children endorsed eating and completing school assignments as being disrupted
by SCD pain more than any of the other areas of daily functioning. Clearly,
these disruptions have implications for the development of health, academic,
social, and psychological competencies
(Shapiro et al., 1995). These
data emphasize the need to assess and treat both physical and psychological
stressors associated with SCD and SCD pain in order to improve the overall
quality of life of these children and their families.
This multidimensional assessment of SCD pain yielded important data regarding parent and child perceptions of the seriousness of SCD and associated pain. These data provide a context for understanding the impact of the disease on the family. Families coping with pediatric SCD experience significant distress and feel threatened by SCD and painful episodes. Parents and children alike perceive SCD and SCD pain as a significant problem and experience anxiety about future episodes of pain. These perceptions of disease severity and associated anxiety are evident in parent and child reports regarding fear of death resulting from a SCD pain crisis. The observation that a majority of parents reported that emotions (e.g., anxious, anger, sadness) might actually trigger their child's painful episodes further highlights the relationship between physical and psychological aspects of this disease. The findings support the assertion that the recurrent and unpredictable nature of SCD pain creates a cycle of emotional distress for the child and parent: they worry about when pain will occur, they perceive SCD as a threat, and they are fearful that pain may result in death.
Methodological limitations of this study should be considered when
evaluating the findings. When assessing parent and child perceptions regarding
the impact of pain on daily functioning, we targeted behaviors that have been
supported as clinically relevant domains for pain assessment
(Varni, 1985;
Walco & Dampier, 1990).
Functional levels during pain-free periods were not specifically assessed in
this study. Thus, we were not able to clearly establish the differences in
children's functional levels during pain-free periods and pain crises. Future
studies should examine functional levels during both pain-free and painful
episodes so that the impact of sickle cell disease may be more accurately
quantified. No chronic pain contrast group was utilized in this study. It
would be helpful if future research utilized another pediatric pain population
(e.g., juvenile rheumatoid arthritis) as a contrast group. However, caution
should be used when considering different chronic pain syndromes due to unique
differences in children's pain experience, as well as different physiological
mechanisms for pain (Melzack &
Torgerson, 1971; Walco &
Dampier, 1990). Two specific limitations of our study are
associated with the sample size. First, the small sample size limits the power
of statistical procedures. Additionally, while stratified random sampling was
used to increase the generalizability of findings, this rigorous sample
selection technique may have limited generalizability due to potential bias
emerging from the small number of families participating in the study. Because
sickle cell disease is a highly variable disease with regard to its
pathophysiology and influence on behavior, care should be taken with the
generalization of the results of this study. Future research would benefit
from collaborative multisite studies that could recruit larger numbers of
children and thus provide greater statistical power and improve
generalizability. We also are aware that retrospective assessment of pain may
affect the child's and parents' ability to accurately report the specific
nature and quality of pain. Finally, we acknowledge the limitations of the
cross-sectional design. These limitations should be addressed in future
studies by considering the application of longitudinal assessment procedures
during both pain-free and pain crisis periods.
Future research must incorporate the findings from the available assessment
studies (e.g., work by Shapiro, Dinges, and colleagues; Gil and colleagues;
Walco, Varni, and colleagues; this study) into the development and evaluation
of treatments for pediatric SCD pain. Because ineffective coping behaviors are
prevalent and stable by adolescence (Gil et
al., 1997), a preventative, family-based approach to intervention
may hold great promise (Powers &
Kalinyak, 1997). The young children (ages 7-12) who participated
in this study could reliably report about their pain experience and its
effects upon their quality of life and therefore may benefit from active
participation in intervention programs. Given that Shapiro and colleagues
(1995) found that the majority
of pain episodes for young children occur at home, and our findings indicating
parents and children perceive pain managed at home to be an intense and
disruptive experience, families likely would benefit from training in
effective home-based pain management strategies. Interventions should be
developed from a biobehavioral perspective that accounts for the multifaceted
nature of pediatric sickle cell pain and incorporates a combined
pharmacological and behavioral approach. The effective use of medications,
along with the inclusion of active pain management skills such as relaxation,
distraction, and positive self-talk, should be evaluated in clinical trials
(Powers, 1995). While there
has been relatively little work done in this important area of pediatric pain,
the information now available shows the convergence necessary to guide the
development of empirically derived treatments. From what children with sickle
cell disease and their families report in this comprehensive assessment study,
the development of empirically based treatments should begin in earnest.
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Acknowledgments |
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Portions of this article have been presented at National Sickle Cell Program meetings and the Florida Conference on Child Health Psychology. This research is supported in part by Sickle Cell Center Grant P60 HL 15996.
Received November 8, 1999; revision received March 30, 2000; accepted June 30, 2000
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