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Pain Res Manag Vol 18 No 1 January/February 2013 33

Daily changes in pain, mood and physical function in youth hospitalized for sickle cell disease pain

William T Zempsky MD1,2, Tonya M Palermo PhD3, John M Corsi MBA1, Amy S Lewandowski PhD3, Chuan Zhou PhD3, James F Casella MD4

1Connecticut Children’s Medical Center, Hartford; 2University of Connecticut School of Medicine, Farmington, Connecticut; 3University of Washington School of Medicine, Seattle, Washington; 4Johns Hopkins University School of Medicine, Baltimore, Maryland, USA

Correspondence: Dr William T Zempsky, Connecticut Children’s Medical Center, 282 Washington Street, Hartford, Connecticut 06106, USA. Telephone 860-837-5207, fax 860-837-5209, e-mail [email protected]

Children and adolescents with sickle cell disease (SCD) are com-monly hospitalized for treatment of painful vaso-occlusive epi-

sodes (VOE) (1). Self-reported pain scores are typically used to track recovery among youth hospitalized for VOE; however, these children experience complex, multidimensional pain, and pain intensity is only one component of the pain and recovery experience for children with SCD (2-4). In addition to pain, mood and physical function are important domains to assess in acute pain management (5). In 2008, the Pediatric Initiative on Methods, Measurement and Pain Assessment in Clinical Trials (PedIMMPACT) group published consensus recom-mendations that identified core outcome domains and measures that should be considered in clinical trials of treatments for acute and chronic pain in children and adolescents (5). Domains identified as relevant to evaluate in trials of therapies for acute pain management in youth include pain intensity, global satisfaction with treatment,

symptoms and adverse events, emotional response, physical function and economic factors (5).

Published reports on children’s pain experiences during hospitaliza-tion for VOE focus primarily on pain intensity (6-9). These studies reveal that pain intensity is in the severe range on admission (scores 8/10 to 10/10 on a 10 cm visual analogue scale), and while pain intensity improves over the course of hospitalization, it often remains in the mod-erate range at discharge. Studies to describe the emotional response of youth during hospitalization for VOE have not yet been performed; how-ever, studies involving the outpatient environment have demonstrated that negative mood is associated with increased pain and decreased func-tion, and mediates the relationship between pain and sleep (10,11).

In the only study that evaluated physical recovery of youth hospital-ized for VOE, 27 youth with SCD had high levels of pain, which improved minimally, and function that remained impaired

ORIGINAL ARTICLE

©2013 Pulsus Group Inc. All rights reserved

WT Zempsky, TM Palermo, JM Corsi, AS Lewandowski, C Zhou, JF Casella. Daily changes in pain, mood and physical function in youth hospitalized for sickle cell disease pain. Pain Res Manag 2013;18(1):33-38.

BACkgRounD: Youth with sickle cell disease (SCD) are commonly hospitalized for treatment of painful vaso-occlusive episodes (VOE). However, limited data are available concerning the course of hospitaliza-tion for these children and adolescents and, in particular, whether daily changes occur in pain, emotional status and physical function.oBJeCTiveS: To characterize changes in daily pain intensity, physical function and mood over the course of hospitalization, and to determine whether specific clinical characteristics were associated with these changes.MeThoDS: Daily ratings of pain (0 to 10 numerical rating scale) and mood (Positive and Negative Affect Scale for Children) were completed by 25 youth (11 to 20 years of age) with SCD over a total of 152 days (mean [± SD] = 6.7±5.6 days) of hospitalization. Trained raters determined each youth’s daily physical function.ReSuLTS: Linear mixed modelling was used to examine changes in pain, mood and physical function during hospital stay. The rate of change over the course of hospitalization was significant for reductions in pain inten-sity (P<0.001) and improvements in physical (motor) function (P=0.001). Positive affect over time was significantly associated with subjects’ physi-cal function scores (B 0.24 [95% CI 0.12 to 0.35]) but not with their pain scores. In contrast, negative affect was positively associated with pain and inversely associated with physical function scores (B 1.58 [95% CI 0.23 to 2.93]).ConCLuSionS: The results of the present study demonstrated that children made daily improvements in physical function and pain over hospitalization for VOE. Mood was related to changes in pain and physi-cal recovery. Assessment of physical function and mood during hospital-ization may help guide strategies to better understand the pain experience in youth with SCD hospitalized with VOE.

key Words: Adolescents; Functional assessment; Pain assessment; Physical functioning; Sickle cell disease; Vaso-occlusive episode

Les fluctuations quotidiennes de la douleur, de l’humeur et de la fonction physique de jeunes hospitalisés en raison de la douleur liée à la drépanocytose

hiSToRiQue : Les jeunes atteints de drépanocytose sont souvent hospi-talisés afin de traiter des épisodes d’occlusion vasculaire (ÉOV) douloureux. Cependant, on possède peu de données sur le déroulement de l’hospitalisation de ces enfants et adolescents, notamment si on observe des fluctuations quo-tidiennes de la douleur, de l’état émotionnel et de la fonction physique.oBJeCTiFS : La présente étude visait à caractériser chaque jour l’intensité quotidienne de la douleur, la fonction physique et l’humeur pendant la durée de l’hospitalisation et à déterminer si des caractéristiques cliniques précises s’associaient à ces fluctuations.MÉThoDoLogie : Vingt-cinq jeunes (de 11 à 20 ans) ont fourni le classement quotidien de leur douleur (sur une échelle de classement numérique de 0 à 10) et de leur humeur (échelle d’affect positif et négatif pour les enfants) à l’égard des ÉOV pendant un total de 152 jours (moyenne[±ÉT] = 6,7±5,6) d’hospitalisation. Des évaluateurs formés ont déterminé la fonction quotidienne de chaque jeune.RÉSuLTATS : Les auteurs ont utilisé le modèle mixte linéaire pour exam-iner les fluctuations de la douleur, de l’humeur et de la fonction physique tout au long de l’hospitalisation. Le taux de fluctuation en cours d’hospitalisation était significatif sur le plan de la réduction de l’intensité de la douleur (P<0,001) et des améliorations de la fonction (motrice) physique (P=0,001). L’affect positif au fil du temps s’associait de manière considérable aux indices de fonction physique du sujet (B 0,24 [95 % IC 0,12 à 0,35]), mais pas aux indices de douleur. Par contre, l’affect négatif s’associait de manière positive à la douleur et était inversement proportionnel aux indices de fonction phy-sique (B 1,58 [95 % IC 0,23 à 2,93]).ConCLuSionS : Les résultats de la présente étude démontrent que les enfants présentaient des améliorations positives de la fonction physique et de la douleur pendant l’hospitalisation en raison d’ÉOV. L’humeur était liée aux fluctuations de la douleur et à la récupération physique. L’évaluation de la fonction physique et de l’humeur pendant l’hospitalisation peut orienter des stratégies en vue de mieux comprendre l’expérience de la douleur chez les jeunes ayant une drépanocytose qui sont hospitalisés en raison d’ÉOV.

Zempsky et al

Pain Res Manag Vol 18 No 1 January/February 201334

during hospitalization (12). This study used three simple, single-item questions regarding sleep, food intake and activity levels obtained by child self-report to provide assessment of function. Additional investi-gations of physical recovery among youth with acute SCD pain using more comprehensive measures of daily function and multiple reporters (eg, parents, nurses) in the hospital setting may expand on these findings.

The goal of the present study was to investigate concurrent daily changes in pain, mood and physical function in children hospitalized for VOE. We focused on expanding knowledge of physical function by using a broad measure that relies on observations of the patient’s func-tional independence. Specifically, we assessed what aspects of function change during hospitalization, whether pain intensity, mood and func-tioning change during hospitalization, the relationship between improvements in physical function and improvements in self-reported pain and mood, and whether individual characteristics were associated with changes in pain intensity, function or mood throughout hospitalization.

We hypothesized that pain intensity would decrease, physical func-tion would increase, and positive mood would increase and negative mood decrease over days of hospitalization. We also hypothesized that opioid use, length of hospital stay and prehospital physical functioning would be associated with physical functioning over hospitalization. Specifically, we hypothesized that higher opiate doses would be associ-ated with lower physical functioning and that a shorter length of stay would be associated with improved physical functioning. We also expected positive associations between prehospital physical func-tioning and physical functioning during hospitalization. Finally, we hypothesized that mood would be associated with changes in pain intensity and function, with more positive affect and less negative affect associated with less pain and better functioning.

MeThoDSProceduresChildren and adolescents (ranging in age from seven to 21 years) with SCD hospitalized for pain consistent with a VOE and with the cogni-tive ability to report pain intensity on a 0 to 10 numerical rating scale (NRS) were eligible for inclusion in the present study. Patients were excluded if they had a primary diagnosis other than VOE or had con-current acute chest syndrome (ACS). The study was approved by the institutional review boards at two participating hospitals in the north-eastern United States. Patients were approached for consent either on hospitalization or during routine clinical visits in anticipation of future hospitalization.

For subjects younger than 18 years of age, signed consent and Health Insurance Portability and Accountability Act (HIPPA) author-ization was obtained from the parent or guardian and the subject gave written assent; subjects 18 years of age or older gave signed consent and HIPPA authorization. Following informed consent/assent and HIPPA authorization, demographic information was obtained from participants’ medical records, and parent and patient baseline meas-ures of function, pain intensity and mood were recorded. On each subsequent day of hospitalization, daily measures of pain, function and mood were recorded. The day of transition to oral opioids (defined as taking any oral opioid) and day of discharge were obtained from med-ical charts.

ParticipantsThirty-three patients were screened for study enrollment. Three par-ents declined to have their children participate and the parents of three additional patients were unavailable to consent. The rate of participation was 84.6%. One patient enrolled in the study but was not hospitalized with VOE during the study period; thus, 26 patients com-pleted data collection. One patient (seven years of age) was excluded from the analyses due to outlying age compared with the rest of the sample. Therefore, the final sample included 25 participants, 11 to 20 years of age (mean [± SD] age 16.6±2.4 years).

Background and prehospital variablesDemographics: Demographic information (age, sex, race, sickle cell genotype, previous hospitalizations, emergency department and clinic visits for pain) was obtained through parent report and medical record review. Duration of pain and opioid use before hospitalization were recorded.Prehospital physical functioning: On admission, youth completed the self-report version of the Child Activity Limitations Interview (CALI-21), a 21-item assessment of children’s functional limitations due to pain over the previous four weeks (13). The CALI-21 showed good internal consistency, high cross-informant reliability and good con-struct validity in a sample of 188 children and adolescents (eight to 18 years of age) with chronic pain (13). On the CALI, children are asked to rate how difficult or bothersome routine activities (ie, going to school, gym, playing with friends, housework) are because of pain, on a 0 to 4 Likert scale. Scores are summed and range from 0 to 84, with higher scores indicating more functional impairment due to pain. The child-report scores for this measure provided an assessment of prehospital physical functioning.

Daily hospital assessment variablesPain intensity: Self-report patient scores on a standard 0 to 10 NRS were recorded by the clinical nurse every 4 h during the patient’s hospi-talization, unless the patient was sleeping. These were verbal reports of pain recorded in the medical record. A mean pain score was calculated for each hospital day. A mean (± SD) of 5.3±1.2 pain scores were recorded daily for each participant. The verbally administered NRS is the most commonly used pain scale in clinical practice and has recently been shown to be a valid assessment tool in children and adolescents with acute pain (14,15).Function: Due to the lack of other available measures of daily physical function, a validated observational and interview measure of functional activity used previously in youth in the inpatient rehabili-tation setting was chosen. Daily physical function was, therefore, assessed using the Functional Independence Measure (FIM) (16). Reliability and validity has been established in adolescents 10 to 24 years of age (17), and construct validity has been demonstrated, with FIM ratings yielding significant correlations with clinician ratings of functional status (18). The FIM consists of 18 items that assess function in two domains: motor function (11 items) and cogni-tive function (seven items) (19). These items include assessments of self-care activities, locomotion, transfers, memory and comprehen-sion. Each of the 18 items is given a score of between 1 and 7, in which 1 indicates that the patient needs ‘total assistance’ to perform the particular activity and 7 indicates that the patient has ‘complete independence’ with that activity. Therefore, total scores range between 7 (functional dependence) and 126 (functional independ-ence) (19). The FIM has been validated as both an observational and self-report measure.

For the purpose of the present study, the FIM was administered daily by a trained research assistant. This individual completed train-ing on the FIM and passed a certifying examination for FIM adminis-tration. The research assistant completed the FIM based on observations and interviews with the primary nurse and the patient to determine a composite rating for each item. Composite ratings are acceptable as per the FIM instruction manual (19). When there was a discrepancy between staff and patient report, a conservative rule was applied to record the highest level of function for that item.Mood: The Positive and Negative Affect Schedule – Child Version (PANAS-C) is a 27-item (12 positive items, 15 negative items) assess-ment of mood that was completed by child self-report on each day of hospitalization (20). The PANAS-C was developed and validated in a sample of children in grades four to eight, and demonstrates good con-vergent and discriminant validity (20). The PANAS-C asks the child to rate the degree to which different words (ie, sad, active, joyful) describe how they feel on a scale of 1 (very slightly or not at all) to 5 (extremely) (20). This scale yields both a positive affect and nega-tive affect score.

Changes in pain, mood and function in SCD patients


opioid use: Opioid use was calculated for each 24 h period in intra-venous morphine equivalents using a standard conversion formula (21).

Statistical analysisThe demographic characteristics of the sample were described using summary statistics. Means and SDs were used for continuous variables, and categorical variables were summarized using frequencies and pro-portions. Within-patient changes in pain intensity, physical func-tioning, cognitive functioning and PANAS-C scores between first and final hospital days were examined using paired t tests. The associations among changes in pain, functioning and mood were assessed using Pearson’s correlation coefficients.

The 25 participants were assessed daily for pain intensity, func-tioning and mood. Days assessed varied from three to 14, generating a total of 152 data points for each measure. To account for the correla-tion among repeated assessments within participants, linear mixed models were used to examine how pain, functioning and mood varied over hospital stay. Changes of individual items on the FIM over hospi-tal stay were also explored using linear mixed-effects models to identify specific areas of function (eg, gross motor function) in which patients experienced improvements. Similar mixed-effects models were adapted to examine how pain was associated with functioning and whether mood modified such a relationship. Linear mixed models were also used to examine associations among PANAS-C scores, opiate use, prehospital physical functioning and changes in pain and motor func-tioning. Significance of parameter estimates was assessed using CIs based on simulations (22).

The sample size consideration was mainly based on anticipated reduction in pain intensity during hospital stay. Using a two-sided one-sample t test, a sample of 19 participants could provide 90% power to

detect a mean within-person reduction of 2.0 with an estimated SD of 2.5 at significance level of 0.05. To account for potential attrition, 25 patients were recruited at baseline. All data analyses were conducted using R statistical software version 2.13.0 (23).

ReSuLTSDescriptive statisticsSample characteristics are summarized in Table 1. Study participants had a mean age of 16.6±2.4 years. The majority were female (80%), African-American (76%) and had a diagnosis of Hemoglobin SS (68%). Before their admission, children had experienced a mean of 2.64±3.8 days (range 0 to 15 days) of pain. The mean hospital length of stay was 6.7±5.6 days (range two to 28 days).

At admission, participants presented with moderate impairment in motor functioning (mean score 54±12). Minimal impairment in cog-nitive functioning was reported, with all participants scoring at or above 34 (out of 35 possible) on this subscale. The mean total opiate use during hospitalization was 0.05±0.02 mg/kg/h morphine equiva-lents (range 0 mg/kg/h to 0.33 mg/kg/h). Participants transitioned from intravenous to oral medication in a mean of 6±5.3 days (range two to 28 days).

Values for pain intensity, physical and cognitive functioning, and PANAS scores obtained on the first and final hospital study days are presented in Table 2. Paired t tests were conducted to compare within-subject scores from first to final day of hospitalization. Mean pain intensity scores were significantly lower on the final day compared with the first day of hospitalization. The mean within-subject reduction of pain was −2.3±2.6 (P<0.001). Similarly, total function and motor function both significantly increased on the final day compared with the first day of hospitalization. The mean within-subject increase in the FIM total score was 11.8±15.7 (P<0.001). The mean within-subject increase in the FIM motor scale was 11.7±15.8 (P=0.001). Because there was almost no change in FIM cognitive scores, most of the changes in total FIM were driven by the changes in FIM motor scale. Positive affect significantly increased (P<0.02) but negative affect was not significantly different between the first and final day of hospitalization.

Daily change in pain intensity, affect and function over hospitalizationLinear mixed-effect models with both random intercept and random slope and a fixed effect for hospital day (time) were used to assess the rate of change in pain score, physical and cognitive function, and positive and negative affect across hospital stay. Unlike the analysis comparing the outcome measures between first and final hospital days, these analyses aimed to assess the rate of change over time for each measure (Table 3). Results revealed a significant fixed effect of hospital day on pain scores, indicating a significant rate of decrease in pain intensity scores over hospital stay. The estimate suggested that, on average, patients experienced a reduc-tion of 0.5 points on the pain scale with each additional hospital day (B −0.51 [95% CI −0.75 to −0.27]). Total function increased over time but the rate of change was not statistically significant

Table 1Demographic and clinical characteristics of the sample (n=25)Characteristic RangeAge, years, mean ± SD 16.6±2.4 11–20Sex Male 5 (20) Female 20 (80)Race Black 19 (76) White 2 (8) More than one race 3 (12) Not reported 1 (4)Ethnicity Not Hispanic 21 (84) Hispanic 3 (12) Not reported 1 (4)Sickle cell disease type Hemoglobin SS 17 (68) Hemoglobin SC 2 (8) Hemoglobin Sβ thalassemia 6 (24)Chronic transfusion Yes 8 (32) No 16 (64) Not reported 1 (4)Hydroxyurea Yes 10 (40) No 14 (56) Not reported 1 (4)Pain before admission, days, mean ± SD (n=22)* 2.64±3.8 0–15Opioids before admission, days, mean ± SD (n=21)† 2.14±3.7 0–15Hospital length of stay, days, mean ± SD 6.7±5.6 2–28

Data presented as n (%) unless otherwise indicated. *Data were missing for three subjects; †Data were missing for four subjects

Table 2Within-subject changes in pain intensity, Functional Independance Measure (FIM) scores and affect between first and final hospital days

First day Final day PAverage pain intensity 6.9±1.5 4.6±2.6 <0.001FIM total score 88.9±11.9 100.7±12.4 <0.001FIM motor 54.1±11.8 65.8±12.4 0.001FIM cognitive 34.9±0.3 34.9±0.3 1.00PANAS – positive 23.1±11.4 29.3±15.2 0.02PANAS – negative 29.3±10.4 24.6±14.1 0.14

Data presented as mean ± SD unless otherwise indicated. P values were cal-culated using a paired t test. PANAS Positive and negative affect schedule

Zempsky et al


(B 1.46 [95% CI –0.06 to 2.93]). However, motor function, as meas-ured using the FIM, showed significant improvement across hospital stay (B 1.41 [95% CI 0.08 to 2.84]). Neither positive affect nor nega-tive affect changed at a significant rate during hospitalization.

Individual FIM motor items were examined using linear mixed-effect models to examine changes over hospitalization. Only walking and climbing stairs showed statistically significant improvement during hospitalization (coefficient estimates 0.36 and 0.30, respectively).

Associations among daily pain, function and opiate useIn mixed-effects regression models adjusting for baseline physical func-tioning on the CALI, higher opiate use was significantly associated with higher pain scores (B 18.68 [95% CI 13 to 25]). However, func-tional scores were not significantly associated with opiate use. Baseline physical functioning on the CALI was not associated with pain or function during hospitalization.

Associations among pain intensity, function and moodThe longitudinal relationships among pain, function and mood were examined in linear mixed models. Increased pain was not associated with decreased functioning (B –1.07 [95% CI –2.61 to 0.41]). Positive affect, however, was significantly associated with functional scores (B 0.24 [95% CI 0.12 to 0.35]) but not with pain scores. When both pain and positive affect were used as predictors for functioning, pain intensity remained nonsignificant (B –0.19 [95% CI –1.78 to 1.40]) and positive affect remained significant (B 0.44 [95% CI 0.17 to 0.75]). No significant effect modification was detected between pain and positive affect. Unlike positive affect, negative affect was significantly associated with pain scores (B 1.58 [95% CI 0.23 to 2.93]) but not motor function.

DiSCuSSionChildren with SCD experience recurrent episodes of severe, unrelent-ing pain, frequently requiring inpatient hospital stays. Little is known about the physical recovery or mood of youth hospitalized for VOE, although these are important components of their pain experience. Assessment of functional status during hospitalization may help to guide strategies to address specific functional impairments and better understand the pain experience in children with SCD (12). Attention to mood may lead to better understanding of the factors that lead to and prolong hospitalizations in this patient group.

As observed in our preliminary study of hospitalized youth with VOE, on the first day of hospitalization, youth reported moderate to severe pain and impaired mood/affect, and demonstrated moderate limitations in motor functioning. As hypothesized, we found that youth experienced reductions in pain and improvements in motor functioning over the course of hospitalization. Specifically, we found positive changes in the ability to walk and climb stairs; however, other aspects of motor function, including eating, bathing, dressing/undressing, and toileting/bladder control did not change during hospitalization. Moreover, cognitive aspects of functioning (eg, communication) were in the normal range (not impaired) at the

beginning of hospitalization and remained stable over the subsequent hospital days. There was an improvement in positive affect but no change in negative affect from the beginning of hospitalization to the end.

Our findings contribute to the scant available literature on pain, physical function and mood among hospitalized children with SCD. The results partially contrast with those of Jacob et al (12), who found no change in activity level, sleep or eating over hospitalization using daily, global self-report scores obtained from children. The findings may differ due to our use of a broader measure of functional independence, which is more detailed and includes more specific functional activities than the measure used in the study by Jacob et al. It is also possible that caregivers can observe vigorous physical activities more easily than other aspects of motor function, resulting in differing reports compared with children’s self-reports. Ideally, assessment of functional status would integrate both child and caregiver reports (24).

Despite the improvement in both motor function and pain during hospitalization, these outcomes were not significantly correlated. Previous studies have demonstrated the lack of direct correspondence between disability and pain, and that behavioural, cognitive and affective factors play a clear role in the extent of functional impair-ment experienced (25). In SCD in particular, clinicians have noted discrepancies between patient behaviour and pain score (25-28), which has led clinicians to doubt the reliability of self-reported pain scores in this population (23,27). This often leads to concerns regarding drug-seeking behaviour and opioid addiction (29). These findings demonstrate the importance of evaluating functional out-comes in addition to pain intensity in the acute setting, and also highlight the need for clinicians to understand that pain report and functional status may not correlate.

We also found that positive affect was associated with changes in motor function across hospitalization in our sample, while negative affect was only associated with changes in pain. Previous studies have demonstrated associations between mood and both pain and function (29-32). In particular, depression has been strongly associated with functional disability in children with chronic pain (29-31). The com-plex associations that we found between pain, function and positive and negative mood suggests that in the acute setting, day-to-day chan-ges in mood may play an important role in recovery. This finding demonstrates the need to consider emotional status in the care of children and adolescents hospitalized for VOE.

We did not demonstrate a relationship between prehospital func-tioning and daily physical functioning during hospitalization in the present study. The CALI evaluates perceived difficulty in physical function due to pain over the previous month in the context of home and school activities. Although we expected that youth with persis-tent impairments in their physical function related to their SCD pain may demonstrate even more reduced physical functioning during hos-pitalization for acute VOE, it is likely that the heterogeneity in the pain experience of youth with SCD lessened the relationship between these two functional measures. Moreover, the individual factors that determine physical functioning related to ongoing or persistent SCD pain at home may be very different from factors that determine in-hospital functional status in the context of acute vaso-occlusive pain. These important issues are in need of further study to understand the relationship between function in different settings and for different types and intensities of pain.

As the PedIMPPACT group noted, there are no validated instru-ments for assessing physical recovery or function in youth with acute pain (5). This is in contrast to functional assessment in chronic pain, for which validated measures for children are available (32-35). In the acute inpatient setting, physical recovery, or the return to the child’s pre-illness level of function, includes aspects of the child’s motor func-tion (eg, ambulation), as well as other measurements of functional status such as oral intake or swallowing. We chose to use a measure of functional abilities in the present study, although not validated in this specific clinical setting, due to the lack of other available measures and

Table 3Rate of change in pain, Functional Independence Measure (FIM) scores and affect over time

MeasureCoefficient estimate

for time effect* 95% CI†

Average pain intensity –0.51 (–0.75 to –0.21)‡

FIM total score 1.46 (–0.06 to 2.93)FIM motor score 1.41 (0.08 to 2.84)‡

PANAS – positive 0.30 (–0.74 to1.34)PANAS – negative –0.79 (–2.04 to 0.55)

*The coefficient estimate is considered to be significant if the 95% CI does not cover 0; †Simulation-based CI; ‡Statistically significant. PANAS Positive and Negative Affect Schedule

Changes in pain, mood and function in SCD patients


ReFeRenCeS1. Yang Y, Sha A, Watso M, Mankad V. Comparison of costs to the

health sector of comprehensive and episodic health care for sickle cell disease patients. Public Health Rep 1997;110:80-6.

2. Ballas SK. Sickle Cell Pain. Seattle: IASP Press, 1998.3. Jones JS, Hobbs SA, Brennan TL, Schmidt JM. Pain assessment in

pediatric sickle cell disease. J Clin Psychol Med Settings 2005;12:339-48.

4. Graumlich SE, Powers SW, Byars KC, Schwarber LA, Mitchell MJ, Kalinyak KA. Multidimensional assessment of pain in pediatric sickle cell disease. J Pediatr Psychol 2001;26:203-14.

5. Mcgrath PJ, Walco GA, Turk DC, et al. Core outcome domains and measures for pediatric acute and chronic/recurrent pain clinical trials: PedIMMPACT recommendations. J Pain 2008;9:771-83.

6. Beyer JE, Simmons LE, Woods GM, Woods PM. A chronology of pain and comfort in children with sickle cell disease. Arch Pediatr Adolesc Med 1999;153:913-20.

7. Trentadue NO, Kachoyeanos MK, Lea G. A comparison of two regimens of patient-controlled analgesia for children with sickle cell disease. J Pediatr Nurs 1998;13:15-9.

8. Zempsky, WT, Loiselle KA, McKay K, et al. Retrospective evaluation of pain assessment and treatment for acute vasoocclusive episodes in children with sickle cell disease. Pediatr Blood Cancer 2008;51:265-8.

9. Jacob E, Miaskowski C, Savedra M, Beyer JE, Treadwell M, Styles L. Changes in intensity, location, and quality of vaso-occlusive pain in children with sickle cell disease. Pain 2003;102:187-93.

10. Valrie CR, Gil KM, Redding-Lallinger R, Daeschner C. Brief report: Daily mood as a mediator or moderator of the pain-sleep relationship in children with sickle cell disease. J Pediatr Psych 2008;33:317-322.

11. Gil KM, Carson JW, Laura LS, et al. Daily stress and mood and their association with pain, health-care use and school activity in adolescents with sickle cell disease. J Pediatr Psych 2003;28:363-73.

12. Jacob E, Miaskowski C, Savedra M, Beyer JE, Treadwell M, Styles L. Changes in sleep, food intake, and activity levels during acute painful episodes in children with sickle cell disease. J Pediatr Nurs 2006;21:23-34.

13. Palermo TM, Lewandowski AS, Long AC, Burant CJ. Validation of a self-report questionnaire version of the Child Activity Limitations Interview (CALI): The CALI-21 Pain 2008;139:644-52.

14. Von Baeyer CL, Spagrud L, MCormick JC, Choo E, Neville K, Connelly MA. Three new datasets supporting use of the Numerical Rating Scale (NRS-11) for children’s self-reports of pain intensity. Pain 2009;143:223-7.

15. Bailey B, Daoust R, Doyon-Trottier E, Dauphin-Pierre S, Gravel J. Validation and properties of the verbal numeric scale in children with acute pain. Pain 2010;149:216-21.

16. Deutsch A, Braun S, Granger C. The Functional Independence Measure (FIM Instrument) and the Functional Independence Measure for Children (WeeFIM Instrument): Ten years of development. Crit Rev Physical Rehabil Med 1996;8:267-81.

17. Voll R, Krumm B, Schweisthal B. Functional Independence Measure (FIM) assessing outcome in medical rehabilitation of neurologically ill adolescents. Int J Rehabil Res 2001;24:123-31.

18. DiScala C, Grant CC, Brooke MM, Gans BM. Functional outcome in children with traumatic brain injury: Agreement between clinical judgment and the Functional Independence Measure. Am J Phys Med Rehabil 1992;71:145-8.

19. Guide for the Uniform Data Set for Medical Rehabilitation (Adult FIM), Version 5.1. Buffalo: State University of New York at Buffalo, 1997.

20. Laurent J, Catanzaro SJ, Rudolph KD, Joiner TE Jr, Potter KI. A measure of positive and negative affect for children: Scale development and preliminary validation. Psychol Assess 1999;11:326-38.

21. Yaster M, Krane, EJ, Kaplan, RF, Cote CJ, Lappe DJ. Opioid agonists and antagonists in pediatric pain management and sedation handbook. St. Louis: Mosby Yearbook Inc, 1997:29-49.

22. Pinheiro JC, Bates DM. Mixed-effects models in S and S-Plus. New York: Springer, 2000.

23. Development core team. R: A language and environment for statistical computing. R foundation for statistical computing. Vienna, Austria. <www.R-project.org> 2011

24. Palermo TM, Long AC, Lewandowski AS, Drotar D, Quittner AL, Walker LS. Evidence-based assessment of health-related quality of life and functional impairment in pediatric psychology. J Pedatr Psychol 2008;33:983-96.

25. Turk DC, Flor H. Chronic pain: A biobehavioral perspective. In: Gatchel RJ, Durk DC, eds. Psychological factors in pain: Critical perspectives. New York: Guilford Press, 1999:18-34.

26. Pack-Mabien A, Labbé E, Herbert D, Haynes J Jr. Nurses’ attitudes and practices in sickle cell pain management. Appl Nurs Res 2001;14:187-2.

27. Labbé E. Physicians’ attitude and practices in sickle cell disease pain management. J Palliat Care 2005;21:246-51.

28. Shapiro BS, Benjamin LJ, Payne R, Heidrich G. Sickle cell-related pain: Perceptions of medical practitioners. J Pain Symptom Manage 1997;14:168-74.

29. Zempsky WT. Treatment of sickle cell pain: Fostering trust and justice. JAMA 2009;302:2479-80.

30. Claar RL, Baber KF, Simons LE, Logan DE, Walker LS. Pain coping profiles in adolescents with chronic pain. Pain 2008;140:368-75.

the inclusion of many relevant items of function. In the future, the evaluation of physical recovery of patients hospitalized with VOE will require an instrument that is sensitive to change over the typical two to seven day hospitalization and that also incorporates the patient’s perspective. Our preliminary findings may help inform the develop-ment of such a measure by identifying key areas of function that change over the course of hospitalization for VOE.

Our study findings should be interpreted in light of several limita-tions. The present study used a small sample of patients who tended to be older (mean age 16.6 years), and stayed in the hospital longer (6.7 days) than a previous retrospective evaluation performed at our centre (8). This suggests that patients included in the study were more likely those who experienced more severe episodes consistent with longer hospitalization; however, given that pain events in this patient group are complex, it is important to note that improvements in physical function could be measured in our study sample. Patients who are younger and with less severe disease might show even more improvement in function over the course of hospitalization. We were limited in the examination of additional clinical questions about sub-sets of patients given our small sample size. However, our primary analyses were well powered because they relied on our daily observa-tions, producing a robust dataset to explore daily changes in pain, mood and function, even in this small sample.

SuMMARyOur preliminary findings demonstrate that pain, mood and physical function change over the course of hospitalization for VOE in children and adolescents with SCD. The lack of correlation between pain intensity and functional recovery in these findings highlight the importance of measuring functional outcomes in this patient group to further understand the impact of VOE. Further work should focus on the development and validation of simple, clinically useful measures to evaluate functional recovery in hospitalized children. Use of these measures, along with attention to positive and negative mood states, will further contribute to the understanding of the complex issues associated with VOE in youth with SCD.

FunDing: Dr Zempsky is supported by the Patrick and Catherine Weldon Donaghue Medical Research Foundation and National Institute of Health grant 1 K23 HL090832-01A1.

DiSCLoSuRe: FIM is a trademark of Uniform Data System for Medical Rehabilitation, a division of UB Foundation Activities, Inc. The use of the FIM instrument to collect data for the present research study was autho-rized and conducted in accordance with the terms of a special purpose license granted to Licensee by Uniform Data System for Medical Rehabilitation a division of UB Foundation Activities, Inc (UDSMR). The patient data collected during the course of the present research study has not been processed by UDSMR. No implication is intended that such data has been or will be subjected to UDSMR’s standard data processing procedures or that it is otherwise comparable with data processed by UDSMR.

Zempsky et al


31. Kashikar-Zuck S, Goldschneider KR, Powers SW, Vaught MH, Hershey AD. Depression and functional disability in chronic pediatric pain. Clin J Pain 2001;17:341-9.

32. Hoff AL, Palermo TM, Schluchter M, Zebracki K, Drotar D. Longitudinal relationships of depressive symptoms to pain intensity and functional disability among children with disease related pain. J Pediatr Psychol 2006;31:1046-56.

33. Walker LS, Greene JW. The functional disability inventory: Measuring a neglected dimension of child health status. J Pediatr Psychol 1991;16:39-58.

34. Palermo TM, Witherspoon D, Valenzuela D, Drotar D. Development and validation of the Child Activity Limitations Interview: A measure of pain-related functional impairment. Pain 2004;109:461-70.

35. Eccleston C, Jordan A, McCracken LM, Sleed M, Connell H, Clinch J. The Bath Adolescent Pain Questionnaire (BAPQ): Development and preliminary psychometric evaluation of an instrument to assess the impact of chronic pain on adolescents. Pain 2005;118:263-70.

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