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Pediatric Chronic Pain and Health-Related Quality of Life
Pediatric Chronic Pain and Health-Related Quality of Life Jeffrey Ira Gold, PhD Alexis Kant Yetwin, BA Nicole Eva Mahrer, BA Melissa Catherine Carson, PsyD Anya T. Griffin, PhD Stephanie Naso Palmer, PhD Michael Henry Joseph, MD
The aim of this study was to investigate the health-related quality of life (HRQOL) of children and adolescents with chronic pain. Sixty-nine participants (53 girls and 16 boys, 8–18 years old) were recruited, along with their caregivers, from an outpatient pain management clinic. Participants completed questionnaires regarding the child's pain intensity and HRQOL (physical, emotional, social, and school functioning). Findings indicated that children with chronic pain report significantly lower HRQOL scores compared to population-based normative data and data of children with other chronic illnesses. Lower levels of pain were associated with higher HRQOL scores. In addition to targeting pain management, interventions focused on emotional health are necessary to enhance health outcomes for children with chronic pain. © 2009 Elsevier Inc. All rights reserved. Key words: Pediatrics; Chronic pain; Health-related quality of life
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VER THE PAST decade, there has been increasing evidence that a child's daily function may be largely affected by chronic pain (Bursch, Joseph, & Zeltzer, 2003; Bursch, Walco, & Zeltzer, 1998; Dunn-Geier, McGrath, Rourke, Latter, & D'Astous, 1986; Palermo, 2000). Chalkiadis (2001) noted in an investigation that 207 children and adolescents referred to a multidisciplinary pediatric pain management clinic evidenced pain-related disability, including school absenteeism (95%), inability to participate in sports (90%), and sleep disruptions (71%). However, few studies have examined the severity of this impact, particularly on health-related quality of life (HRQOL) in a pediatric population seeking treatment of chronic pain. The etiology of pathological chronic pain is often unknown, thus presenting a challenge for clinicians when attempting to prescribe a specific treatment (Konijnenberg et al., 2006). During childhood, approximately 5% of school-aged
Journal of Pediatric Nursing, Vol 24, No 2 (April), 2009
From the Department of Anesthesiology Critical Care Medicine, Pediatric Pain Management Clinic, Comfort Pain Management and Palliative Care Program, Childrens Hospital Los Angeles, Keck School of Medicine, University of Southern California, Los Angeles, CA; Department of Anesthesiology Critical Care Medicine, Childrens Hospital Los Angeles, Los Angeles, CA; USC/UCEDD Mental Health Services and Cardiothoracic Transplant Programs, Pediatric Psychology Program Area Lead, Childrens Hospital Los Angeles, Keck School of Medicine, University of Southern California, Los Angeles, CA; Children's Medical Center Dallas, Southwestern Comprehensive Sickle Cell Center, University of Texas Southwestern Medical Center at Dallas; School Transition and Re-entry (STAR) Program, Center for Cancer and Blood Diseases, Childrens Hospital Los Angeles, Los Angeles, CA; Comprehensive Pain Services, Nationwide Children’s Hospital, Columbus, OH. Corresponding author. Department of Anesthesiology Critical Care Medicine, Children's Hospital Los Angeles, Keck School of Medicine, University of Southern California, 4650 Sunset Blvd., MS #12, Los Angeles, CA 90027-6062. E-mail: [email protected] 0882-5963/$ - see front matter © 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.pedn.2008.07.003
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children experience recurrent abdominal pain, 5%–10% experience chronic headaches, and 15% experience musculoskeletal pains (Dangel, 2005), with many patients failing to receive proper treatment for their condition (Bandell-Hoekstra et al., 2002; Janse, Sinnema, Uiterwaal, Kimpen, & Gemke, 2005; Perquin et al., 2001; Sallfors, Hallberg, & Fasth, 2004; Virtanen et al., 2002; Wiendels, van der Geest, Neven, Ferrari, & Laan, 2005). Chronic pain can also co-occur with an underlying medical illness such as cancer, sickle cell disease, or a rheumatologic condition (Hunfeld et al., 2001; Malleson, Connell, Bennett, & Eccleston, 2001; Sporrer, Jackson, Agner, Laver, & Abboud, 1994). In addition to noted physical concerns, research has also documented functional disability and psychological distress among pediatric patients with chronic pain. These include patients with gastrointestinal issues (e.g., functional abdominal pain and inflammatory bowel disease; Youssef, Murphy, Langseder, & Rosh, 2006), rheumatologic problems (Brunner et al., 2004), and cancerrelated pain (Seid, Varni, Rode, & Katz, 1999; Varni, Burwinkle, Katz, Meeske, & Dickinson, 2002). As much as 95% of children with chronic pain miss a considerable number of school days (Chalkiadis, 2001), and their attendance is marked by painful episodes, impaired academic function, and teachers who are not adequately equipped to handle these situations (Logan & Curran, 2005). In addition, children with chronic pain are frequently hospitalized and exposed to stressful medical environments and procedures, which in turn can interfere with the achievement of ageappropriate developmental milestones (Schulz & Masek, 1996). Health-related quality of life, which assesses the impact of chronic illness on daily functional outcomes in a patient's life, is increasingly recognized as a valuable measure. A comprehensive and multidimensional construct, HRQOL is defined as an individual's subjective perception of his or her functioning and emotional state. In the pediatric literature, HRQOL is commonly evaluated using the Pediatric Quality of Life Inventory (PedsQL 4.0, Leon, France; Varni, Seid, & Rode, 1999), which specifically assesses physical, emotional, social, and school functioning in children and adolescents. HRQOL has been evaluated in samples of healthy children (Varni, Seid, & Kurtin, 2001; Varni, Burwinkle, Seid, & Skarr, 2003; Varni, Burwinkle, & Seid, 2006) and those with chronic
GOLD ET AL
illness (Varni, Burwinkle, et al., 2002; Varni, Seid, et al., 2002; Varni, Seid, Knight, Uzark, & Szer, 2002). Only a handful of studies, however, have used the PedsQL to assess HRQOL in children and adolescents with chronic pain (Connelly & Rapoff, 2006; Youssef et al., 2006; Vetter, 2008). Previous investigations of children with chronic pain and health-related outcomes have revealed significant effects of age. Age has been shown to be associated with coping in children with chronic pain (Lynch, Kashikar-Zuck, Goldschneider, & Jones, 2007) and poor HRQOL in children with migraine headaches (Powers, Patton, Hommel, & Hershey, 2004). Specifically, Powers et al. (2004) suggest that older children with migraine headaches may have more impaired HRQOL (i.e., lower school functioning) than younger children. However, no specific causes for these age effects have been posited. The purpose of the current study was to examine HRQOL in children and adolescents with chronic pain seeking outpatient pain management services from an urban children's hospital compared to the PedsQL 4.0 population-based normative data and published data on children and adolescents with cancer and rheumatologic conditions. This article explores the effects of pediatric chronic pain on HRQOL by providing multidimensional assessment and comparisons with published data in pediatric oncology and rheumatologic conditions to benchmark the findings (Varni, Burwinkle, et al., 2002; Varni, Seid, Smith Knight, et al., 2002). The investigators hypothesize that children seeking treatment of chronic pain will be at risk for poor HRQOL. In addition, the investigators expect these children to self-report HRQOL data similar to published data on children with specific pediatric pain-related conditions (Connelly & Rapoff, 2006; Youssef et al., 2006; Vetter, 2008). Secondary exploratory analyses will examine the relationships between age, gender, pain intensity, and HRQOL. MATERIALS AND METHODS
Participants and Settings All pediatric patients seeking outpatient pain management services were screened for participation in this study at their initial face-to-face intake with the psychologist (principal investigator) and the attending pain physician (coinvestigator). Eligible participants were English-
PEDIATRIC CHRONIC PAIN AND HEALTH-RELATED QUALITY OF LIFE
speaking children and adolescents between the ages of 8 and 18 years and their caregivers: a parent or legal guardian. Intake data were collected using standardized pencil-and-paper measures. Both the child's and caregiver's self-report measures were collected to examine HRQOL and to explore concordance rates across all measures of interest. If more than one caregiver was present at the interview, the child's primary caregiver completed the forms; the primary caregiver was defined as the parent or legal guardian who spent the most time with the child. Participants were recruited from January 2003 through November 2007. Informed consent was obtained from all participants. The hospital's institutional review board approved all study procedures in accordance with requirements established by the U.S. Department of Health and Human Services. Exclusion criteria for patients were determined as follows: (a) they met criteria for a developmental disability or had cognitive or neurological deficits that would prevent them from comprehending and completing the self-report assessment questionnaires (e.g., mental retardation and organic brain dysfunction); (b) they were alcohol or drug dependent; or (c) they were in acute psychiatric distress (defined as a danger to themselves or others), as indicated by suicidality, homicidality, or psychosis. All eligible participants and their primary caregivers were asked to complete the study measures at the time of consent, which occurred at the end of their initial evaluation. Families facing time restraints at the clinic (e.g., returning to work or school) were allowed to complete the measures at home within the next 48 hours to minimize potential treatment effects. Regardless of the setting, children and their caregivers were instructed to complete the measures separately from one another.
Measures Pain Questionnaire Children completed the pain questionnaire to assess their pain perception for the least, most, or usual pain experienced in the past 7 days. The questionnaire included assessment of pain frequency, intensity, and location. Pain intensity was measured using a 10-cm Visual Analog Scale (VAS) ranging from 0 (no pain) to 10 (worst pain imaginable). Child- and caregiver-reported scores were moderately concordant for all indices: least pain experienced (r = .26), most pain experienced
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(r = .13), and usual pain experienced (r = .31). When the child's and caregiver's responses were further examined, pain intensity scores for both children and caregivers had normal distributions for measures of least, usual, and worst daily pain, with children reporting worse pain intensity than do caregivers. The child-reported worst pain intensity scores ranged from 4 to 10 and were negatively skewed (−1.5). The PedsQL 4.0 Measurement Model The PedsQL measurement model is composed of developmentally appropriate generic core scales and disease-specific modules that measure HRQOL for children and adolescents aged 2–18 years (Varni et al., 1999). Both the child's self-report and proxyreport versions of the questionnaires are available. The PedsQL uses a 5-point Likert scale in which children and caregivers rate how much a problem each item has been for the child over the past 7 or 30 days (0 = never a problem, 1 = almost never a problem, 2 = sometimes a problem, 3 = often a problem, and 4 = almost always a problem; Varni et al., 1999). Responses are reverse scored and linearly transformed to a 0–100 scale, with higher scores indicating better HRQOL (Varni et al., 1999; Varni et al., 2002). The PedsQL 4.0 Generic Core Scales The PedsQL 4.0 generic core scales (23 items) measure physical health (8 items, α = .91 for child report and α = .79 for proxy report), emotional functioning (5 items, α = .80 for child report and α = .82 for proxy report), social functioning (5 items, α = .70 for child report and α = .78 for proxy report), and school functioning (5 items, α = .82 for child report and α = .77 for proxy report; Varni et al., 2002). The total HRQOL scale score is a summary score taking into account every subscale, (23 items, α = .93 for child report and α = .89 for proxy report; Varni et al., 2002). Varni and colleagues have established at-risk cutoff scores indicating poor HRQOL for the PedsQL 4.0 core scales. These scores were determined by approximating 1-standard deviation below mean scores for a normative sample of 5,972 healthy children aged 5–18 years and 10,070 caregivers of children aged 2–18 years (Schwimmer, Burwinkle, & Varni, 2003; Varni et al., 2003). Child- and caregiver-reported scores on the PedsQL 4.0 generic core scales were moderately to highly concordant (p b .01) for all indices: total HRQOL (r = .65), physical functioning (r = .60),
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emotional functioning (r = .62), social functioning (r = .60), and school functioning (r = .60).
Data Analyses Descriptive statistics and bivariate correlations were used to examine the data. The children'/ adolescents' (n = 66) and their primary caregivers' (n = 69) total HRQOL and subscale HRQOL means were referenced against the established HRQOL at-risk mean scores and two clinical pediatric cohorts: oncology (n = 219) and pediatric rheumatology (n = 231) patients. One-sample t tests were used to compare the current study population to the sample means in the oncology and rheumatology samples. Internal consistency reliability scale was determined by calculating the Cronbach's alpha coefficient (Cronbach, 1951; Schwimmer et al., 2003; Varni et al., 2003). Independent t tests were used to test for age and gender differences in pain intensity and all PedsQL scales. Correlations were then calculated with two-tailed Pearson product–moment correlations to look at the relationships between the child's age, pain intensity, and all PedsQL scales. All statistical testing used a significance level of p b .05. A power analysis based on the correlations indicates that, assuming a medium effect size of .40, a sample of 45 is necessary to obtain power equal to .80 and that a sample of 60 will provide power equal to .90 (Cohen, 1988). Statistical analyses were conducted using SPSS Version 15.0 for Windows (Statistical Package for the Social Sciences, 1998; Chicago, IL). RESULTS
Participants Sixty-nine child–caregiver dyads participated in the study. Fifty-three girls (77%) and 16 boys (23%) reported an average age of 13.7 years (SD = 2.6 years). Participants included 21 children (13 girls and 8 boys) and 48 adolescents (40 girls and 8 boys). Participants reported daily usual pain intensity (M = 6.1, SD = 1.9), worst daily pain intensity (M = 8.8, SD = 1.5), and least daily pain intensity (M = 3.0, SD = 2.4) on a 10-cm VAS ranging from 0 (no pain) to 10 (worst pain imaginable). Twenty-nine percent reported pain in at least three sites; these sites included head, arm/ leg, abdomen, back, and chest. In addition to experiencing chronic pain symptoms, approximately 28% of the participants were diagnosed
with an additional chronic illness, such as lupus, sickle cell disease, spina bifida, and cancer, as confirmed by the medical chart review and medical history during the initial interview with the attending pain physician and psychologist. The children in the current sample reflect the typical pediatric population with outpatient chronic pain at a West Coast tertiary care children's hospital: Caucasian (55.1%), Latino (23.2%), African American (5.8%), Asian/Pacific Islander (1.4%), and other ethnic backgrounds (14.5%). Ninety-four percent of the caregiver questionnaires were completed by female caregivers (M = 46 years, SD = 6.6 years). Most of the caregivers were married (67.6%, n = 46) and had completed some post-high school education (78%, n = 53). Ninety-six child–caregiver dyads were approached to participate in this study before gathering 69 sets of completed measures. Nineteen sets were not returned, 3 sets did not have a complete child battery, 1 set did not have a complete caregiver battery, 2 child–caregiver dyads withdrew, and 2 families declined to participate. Participants who completed the measures were not significantly different than the 27 noncompleters with regard to age, gender, or ethnicity.
Health-Related Quality of Life Scores and At-Risk Status Health-related quality of life outcomes were evaluated on the entire sample (Table 1). All child and caregiver subscales and total scores met or exceeded the statistical minimum reliability standard of 0.70 for individual or group comparisons (Nunnally & Bernstein, 1994). Child-reported physical functioning and total HRQOL met the 0.90 recommendations for individual comparisons (Nunnally & Bernstein, 1994). Descriptive findings detailing child- and caregiver-reported measures of HRQOL of the children with chronic pain are displayed in Table 1. Child and caregiver scores from the PedsQL 4.0 are displayed alongside established PedsQL at-risk cutoff scores (Varni et al., 2003) and those of children with cancer (Varni, Burwinkle, et al., 2002) and rheumatologic conditions (Varni, Seid, Smith Knight, et al., 2002; Table 1). On the basis of child and caregiver self-reports, children in this chronic pain sample were at risk for poor total HRQOL and physical, emotional, and school functioning. Social functioning was the only HRQOL subscale that did not meet the criteria for at-risk status according to both child and caregiver
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Table 1. Child- and Caregiver-Reported HRQOL, At-Risk Status, and Group References of Children With Cancer and Rheumatologic Conditions Child report PedsQL 4.0 generic core scales
Total scale score Physical functioning Emotional functioning Social functioning School functioning
Current study
Previously published results
Chronic pain sample, M (SD), n = 65
59.5 (20.0) ⁎ 52.5 (25.8) ⁎ 53.9 (23.0) ⁎ 76.3 (19.4) 59.4 (25.1) ⁎
At-risk cutoff score
69.71 72.98 59.57 66.61 62.99
Oncology sample, M (SD), n = 219
72.2 71.8 71.8 76.8 68.5
Rheumatology sample, M (SD), n = 231
(16.4) (21.8) (21.4) (20.3) (19.7)
72.1 68.1 70.9 80.8 71.4
(16.9) (22.5) (22.1) (18.3) (18.9)
Caregiver report PedsQL 4.0 generic core scales
Current study
Previously published results
Chronic pain sample, M (SD), n = 64
Total scale score Physical functioning Emotional functioning Social functioning School functioning
54.1 (18.9) ⁎ 52.0 (24.3) ⁎ 48.0 (22.5) ⁎ 66.7 (23.7) 51.5 (24.4) ⁎
At-risk cutoff score
65.42 63.28 63.29 62.07 56.75
Oncology sample, M (SD), n = 336
69.7 68.8 67.5 75.6 66.4
Rheumatology sample, M (SD), n = 244
(19.2) (25.0) (20.3) (20.6) (23.2)
71.0 66.7 69.0 77.5 73.4
(18.5) (24.1) (21.4) (20.1) (21.1)
Note: The current study sample scored significantly lower HRQOL scores on all subscales with the exception of social functioning when compared to the oncology and rheumatology samples. In addition, all subscales with the exception of social functioning reflect means that fall below the at-risk cutoff score (for impaired HRQOL) established by subtracting 1 standard deviation from the mean scores of the population-based normative sample of healthy children and their caregivers. Data from Varni, Burwinkle, et al., 2002; Varni, Seid, Smith Knight, et al., 2002; Varni et al., 2003. ⁎p b .01. Represents significant differences between the current study sample and previously published oncology and rheumatology samples.
reports. One-sample t-tests revealed that children and caregivers in this sample also reported significantly lower HRQOL scores (p b .01) on all subscales, except social functioning, when compared to the HRQOL scores from previous studies on children with cancer (Varni, Burwinkle, et al., 2002) and rheumatoid conditions (Varni, Seid, Smith Knight et al., 2002).
Relationships Between Age, Gender, Pain, and HRQOL Secondary exploratory analyses revealed that adolescents (13–18 years) reported lower scores than did children (8–12 years) on reports of Table 2. Significant Age Effects Child report (PedsQL 4.0 generic core scales)
Total HRQOL Children (8–12 years) Adolescents (13–18 years) Emotional functioning Children (8–12 years) Adolescents (13–18 years)
Pain sample, M (SD), n = 21 children and n = 44 adolescents
Pain sample, M (SD), n = 65
59.5 (20.0) 66.6 (17.1) 56.1 (20.6) 53.9 (23.0) 63.3 (17.1) 49.4 (24.2)
Note: All measures of HRQOL were assessed for age and gender effect. This table displays the significant effects revealed by the analyses. The third column presents HRQOL scores for the entire sample, not accounting for age effects.
emotional functioning (t = 2.36, p b .05) and total HRQOL (t = 2.09, p b .05); however, no other age or gender differences on pain scores or HRQOL were noted (Table 2). The sample was then collapsed across age, and Pearson product–moment correlations were conducted to examine overall age effects on measures of pain and HRQOL. Age was significantly related to physical functioning (r = −.26, p b .05), indicating that physical functioning decreased as a function of age. All other age-related correlations were not significant (Table 3). Least pain experienced was negatively associated with emotional (r = −.25, p b .05) and physical (r = −.33, p b .01) functioning. An inverse relationship was found between most pain experienced and emotional functioning (r = −.28, p b .05). Gender effects were examined using Spearman rank order correlations, which revealed no significant relationship between gender and all measures of pain intensity and HRQOL. DISCUSSION The current findings highlight the profound functional impairment that children and adolescents experience because of living with chronic pain. Although previous studies have reported poor daily function for pediatric patients with chronic pain, this particular investigation points to the exigency
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GOLD ET AL Table 3. Relationships Between Age, Pain, and HRQOL
1. Age 2. Least pain 3. Most pain 4. Usual pain 5. Physical functioning 6. Emotional functioning 7. Social functioning 8. School functioning 9. Total HRQOL
1
2
3
1 .08 .00 .16 −.26 ⁎ −.30 ⁎
1 .24 .51 ⁎⁎ −.25 ⁎ −.33 ⁎⁎
1 .46 ⁎⁎ −.11 −.28 ⁎
−.09 −.20 −.27 ⁎
.02 .01 −.19
−.13 −.17 −.19
4
5
6
7
8
9
1 −.12 .25 −.08 .00 −.13
1 .40 ⁎⁎ .55 ⁎⁎ .58 ⁎⁎ .92 ⁎⁎
1 .56 ⁎⁎ .43 ⁎⁎ .81 ⁎⁎
1 .45 ⁎⁎ .78 ⁎⁎
1 .82 ⁎⁎
1
⁎p b .05. ⁎⁎p b .01.
of the situation within a general treatment-seeking population. In support of our primary hypothesis, children and adolescents with chronic pain report lower HRQOL scores than the population-based normative means. All children and adolescents selfreported HRQOL scores at or below the at-risk cutoff for all measures of HRQOL except for social functioning, indicating significant HRQOL impairment. In addition, the current sample self-reported HRQOL scores significantly lower than did patients with rheumatologic conditions (Varni, Seid, Smith Knight, et al., 2002) and cancer-related pain (Varni, Burwinkle, et al., 2002). Contrary to the second hypothesis, expecting that the current sample would self-report HRQOL data similar to other published data on children with specific pediatric-pain-related conditions (i.e., functional abdominal pain, irritable bowel disease, and gastroesophageal reflux disease; Youssef et al., 2006), the current sample scored an average of 20 points lower than children with these conditions on all measures of HRQOL except social functioning. As expected, secondary analyses revealed that least pain experienced was negatively associated with HRQOL outcomes. Specifically, least pain was related to better physical and emotional functioning. In addition, most pain experienced was related to declines in HRQOL (emotional functioning), confirming previous findings indicating an inverse relationship between chronic pain and HRQOL (Powers et al., 2004). These findings clearly highlight the negative effects of chronic pain on HRQOL and the need for intervention. Because many patients with pediatric functional pain conditions lack definitive clinical findings (i.e., physical, radiological, or laboratory) their medical illness and subsequent functional impairment can often be misdiagnosed, mistreated, or even neglected (Bandell-Hoekstra et al., 2002; Janse et al., 2005; Perquin et al., 2001; Virtanen et al.,
2002; Wiendels et al., 2005). If not well understood or treated, this population will continue to be at risk for further problems with daily function, including difficulty with school, family, and peer interactions. This study empirically validates clinical observations that children with chronic pain report significant impairment in not only school ability but also daily physical and emotional functioning. Given the current findings, there is a great need for clinicians to consider comprehensive treatment protocols that aim to reduce physical and emotional correlates of pain while promoting increased functioning. Encouraging clinicians to move beyond reliance on clearly defined physical or structural findings may contribute to improved functional outcomes in this patient population. Although both children and adolescents reported impairments in total HRQOL and emotional functioning, adolescents were significantly more impaired in these areas than were children. These differences may be accounted for by age-specific developmental processes as adolescents may be more aware of the impact of the illness on their physical and emotional well-being. In addition, adolescents may be exposed to a greater number of activities than children, thus highlighting their disability (Powers et al., 2004). As this is one of few studies examining age-related effects on HRQOL in children and adolescents seeking treatment of chronic pain, additional research is needed to fully understand the possible determinants of age on specific domains of function.
Limitations Principal limitations of this study include a crosssectional design and a small sample size. Although one could argue that these results cannot be generalized, the higher incidence of chronic pain in girls as opposed to boys in our sample is highly representative of the general pediatric population
PEDIATRIC CHRONIC PAIN AND HEALTH-RELATED QUALITY OF LIFE
with chronic pain (Kashikar-Zuck, Goldschneider, Powers, Vaught, & Hershey, 2001; Perquin et al., 2000; Vetter, 2008). In addition, the sample's ethnic diversity reflects that of an urban public outpatient pain management clinic for children and adolescents on the West Coast. Although the current study provides a naturalistic perspective of a general population seeking treatment of chronic pain, these results do not reflect a disease-specific population but rather a heterogeneous sample with regard to diagnosis, sites of pain, and symptoms. Of additional concern is the fact that patients were asked to participate in the current study during their first visit to the pain management service. Because patients may seek care during periods when pain is most distressing, the participants in this study may report particularly high pain intensity and low HRQOL relative to other sampling periods. Likewise, during admission to a pain service, patients may be highly motivated to report great distress to communicate the severity of their concerns to the health care provider. This selection factor may bias the results toward poorer health outcomes and detract from the validity of the comparison with the oncology and rheumatology samples, which may have been collected under different circumstances. In addition, because all patients evaluated in the outpatient pediatric pain management clinic were in a significant amount of pain, these findings cannot be generalized to less affected children within the community. The current study also failed to assess the following confounding variables: the presence of comorbid psychiatric conditions, the current use of pain medications or low-dose antidepressants prior to this clinic evaluation, and the number of previous pain clinics attended. Although these factors may have contributed to diminished functioning, they only underscore the complex and often difficult life circumstances of a child or adolescent with chronic pain. Finally, most study participants completed measures at home, without the supervision of one of the study investigators. Although children and caregivers were instructed to complete the questionnaires independently of one another, it is unclear whether they complied. For future investigations, the use of structured clinical interviews in addition to self-reported questionnaires deserves consideration.
Clinical Considerations Nurses are in a unique position to assess and assist children in the management of pain (Table 4).
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They can make recommendations for ongoing pain management, which can include medication, stress management, psychotherapy, and/or other integrative practices (e.g., physical therapy, acupuncture, and massage). Whether at the bedside or in a school setting, nurses can assist and advocate for children with chronic pain in their battle against documented HRQOL impairments. For example, in a school setting, nurses can educate family members about the advantages of an individualized education plan (IEP), which establishes provisions for children enrolled in school (e.g., rest time, modified physical education, partial home schooling, etc.) to manage the ongoing disability associated with painful episodes. In the hospital setting, nurses can help prepare children for painful medical procedures by explaining the procedure in a developmentally appropriate language (Harrison, 1991). Advocacy begins with a comprehensive assessment, which identifies pain history (intensity, frequency, and quality), previous and current treatments (e.g., psychotherapy, physical therapy/ occupational therapy, medications), the child's and family's medical and psychiatric history, and functional outcomes (e.g., HRQOL, school, and social functioning). A detailed pain assessment highlights the complex multifactorial nature of chronic pain, which includes biological, psychological, and social components. The identification of the family's medical and psychiatric history and dynamics is also useful for nurses in understanding the family's role in increasing or decreasing pain-associated distress, anxiety, and/or disability for the child. In hospital settings, nurses can offer creative solutions to decrease the negative effects of pain by promoting the use of simple distraction methods (e.g., reading or providing toys and bubbles; Schiff, Holtz, Peterson, & Rakusan, 2001; Carlson, 2000; Kuttner, 1989), relaxation techniques (e.g., diaphragmatic breathing and guided imagery; Blount et al., 1992; Cohen, 2002; Jay, Elliot, Fitzgibbons, & Siegel, 1995), physical strategies (e.g., hydration or hot–cold packs), or parent- and nurse-coaching models (Gonzalez & Routh, 1993; McMurtry, McGrath, Asp, & Chanbers, 2007; Cohen, Blount, & Panopoulos, 1997). It is also beneficial for nurses to collaborate with child life specialists (Bandstra et al., 2008) and trained mental health professionals (i.e., social workers and psychologists) to evaluate the child's existing coping mechanisms and to foster the use of healthy adaptive coping techniques. Nurses advocating for treatments that address the
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GOLD ET AL Table 4. Coping Strategies Helpful to the Practicing Nurse Coping technique
Psychoeducation Preparation for medical procedures IEP
Location
Hospital
Explaining procedures to the child in a language that they can understand may make the child more comfortable. IEPs can educate the school (administrators and teachers) about the serious nature of the child's pain and associated impairments.
School
Relaxation exercises Diaphragmatic breathing
Hospital/School
Guided imagery
Hospital/School
Distraction methods Reading Watching TV, cartoons Toys (e.g., kaleidoscopes) Music (e.g., audiotaped lullaby) Mental arithmetic Bubbles
Reason
Deep breathing from the diaphragm rather than the chest can minimize stress and anxiety. Having the child picture a less stressful environment can help calm the child down.
Hospital
Distraction techniques that the child can do independently can be very helpful.
Hospital
Interacting with the child to decrease focus on their pain can be beneficial as well.
Coaching Maternal talk, parental reassurance
Hospital
Nurse coaching
Hospital
A calm maternal voice has demonstrated success in relaxing a child during medical procedures. Nurse coaching has been found to be more practical and cost effective in reducing child anxiety.
Physical strategies Hydration Hot–Cold packs
Hospital/School Hospital/School
Plenty of water can help minimize painful episodes. Applying these packs can help alleviate the child's pain.
IEP = individualized education plan. Data from Harrison, 1991; Blount et al., 1992; Jay et al., 1995; Schiff et al., 2001; Cassidy et al., 2002; Carlson et al., 2000; Fowler-Kerry & Lander, 1987; Megel, Houser, & Gleaves, 1998; Elliott & Olson, 1983; Kuttner, 1989; Gonzalez & Routh, 1993; McMurtry et al., 2007; Cohen et al., 1997.
biopsychosocial nature of chronic pain will have the most profound impact on the child's condition, leading to greater function and improved HRQOL. CONCLUSION Although clinicians have long known that children and adolescents with chronic pain suffer from disability related to their pain, this investigation highlights the severity of the impairment across multiple domains of HRQOL. Unless health professionals fully address the needs of children and adolescents with chronic pain, we will continue to witness their functional impairment. Treatment approaches must address symptom management and alleviation. The most effective treatments, however, will also emphasize rehabilitation beyond pain alleviation. Examples include, reintegrating of children into regular schools and
providing education for children and caregivers on daily coping strategies. Future studies may benefit from an examination of co-existing functional problems (e.g., fatigue), coping strategies, and the implementation of family-focused interventions to reduce barriers that impede normal childhood development. Additional longitudinal research with multimodal measurement is recommended to continue exploring functional outcomes and long-term consequences of pediatric chronic pain. Nurses are in a keen position to assist in the assessment of pain and to provide education and referrals for ongoing pediatric pain management. Therefore, the most effective pain management for this population requires nurses and other health care providers to approach treatment with a comprehensive biopsychosocial understanding of pediatric chronic pain and its effects on HRQOL.
REFERENCES Bandell-Hoekstra, I. E., Abu-Saad, H. H., Passchier, J., Frederiks, C. M., Feron, F. J., & Knipschild, P. (2002). Coping and quality of life in relation to headache in Dutch schoolchildren. European Journal of Pain, 6, 315−321.
Bandstra, N. F., Skinner, L., Leblanc, C., Chanbers, C. T., Hollon, E. C., Brennan, D., & Beaver, C. (2008). The role of child like in pediatric pain management: A survey of child life specialists. Journal of Pain, 9, 320−329.
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Blount, R. L., Bachanas, P. J., Powers, S. W., Cotter, M. W., Franklin, A., Chaplin, W., et al. (1992). Training children to cope and parents to coach them during routine immunizations: Effects on child, parent, and staff behaviors. Behavioral Therapy, 23, 689−705. Brunner, H. I., Klein-Gitelman, M. S., Miller, M. J., Trombley, M., Baldwin, N., Kress, A., et al. (2004). Health of children with chronic arthritis: Relationship of different measures and the quality of parent proxy reporting. Arthritis and Rheumatism, 51, 763−773. Bursch, B., Joseph, M., & Zeltzer, L. (2003). In N. L. Schechter, C. B. Berde, & M. Yastor (Eds.), Pain-associated disability syndrome; pain in infants, children, and adolescents (pp. 841−849). Philadelphia, PA: Lippincott Williams & Wilkins. Bursch, B., Walco, G. A., & Zeltzer, L. (1998). Clinical assessment and management of chronic pain and pain-associated disability syndrome. Journal of Developmental and Behavioral Pediatrics, 19, 45−53. Carlson, K. L., Broome, M., & Vessey, J. A. (2000). Using distraction to reduce reported pain, fear, and behavioral distress in children and adolescents: A multisite study. Journal of the Society of Pediatric Nurses, 5, 75−85. Cassidy, K. L., Reid, G. J., McGrath, P. J., Finley, G. A., Smith, D. J., Morley, C., et al. (2002). Watch needle, watch TV: Autovisual distraction in preschool immunization. American Academy of Pain Medicine, 3, 108−118. Chalkiadis, G. A. (2001). Management of chronic pain in children. Medical Journal of Australia, 175, 464−479. Cohen, J. (1988). Statistical power analysis for behavioral sciences, 2nd ed. Hillsdale, NJ: Lawrence Earlbaum Associates. Cohen, L. (2002). Reducing infant immunization distress through distraction. Health Psychology, 21, 207−211. Cohen, L. L., Blount, R. L., & Panopoulos, G. (1997). Nurse coaching and cartoon distraction: An effective and practical intervention to reduce parent, and nurse distress during immunizations. Journal of Pediatric Psychology, 22, 355−370. Connelly, M., & Rapoff, M. A. (2006). Assessing healthrelated quality of life in children with recurrent headache: Reliability and validity of the PedsQL 4.0 in a pediatric headache sample. Journal of pediatric psychology, 31, 698−702. Cronbach, L. J. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16, 297−334. Dangel, T. (2005). Management of chronic pain in children. Current Paediatrics, 15, 69−74. Dunn-Geier, B. J., McGrath, P. J., Rourke, B. P., Latter, J., & D'Astous, J. (1986). Adolescent chronic pain: The ability to cope. Pain, 26, 23−32. Elliott, C. H., & Olson, R. A. (1983). The management of children's distress in response to painful medical treatment for burn injuries. Behaviour Research & Therapy, 21, 675−683. Fowler-Kerry, S., & Lander, J. R. (1987). Management of injection pain in children. Pain, 30, 169−175. Gonzalez, J. C., & Routh, D. K. (1993). Effects of maternal distraction versus reassurance on children's reactions to injections. Journal of Pediatric Psychology, 18, 593−604. Harrison, A. (1991). Preparing children for venous blood sampling. Pain, 45, 299−306. Hunfeld, J. A., Perquin, C. W., Duivenvoorden, H. J., Hazebroek-Kampschreur, A. A., Passchier, J., van SuijlekomSmit, L. W., et al. (2001). Chronic pain and its impact on quality of life in adolescents and their families. Journal of Pediatric Psychology, 26, 145−153. Jay, S., Elliott, C. H., Fitzgibbons, I., Woody, P., & Siegel, E. (1995). A comparative study of cognitive behavior therapy versus general anesthesia for painful medical procedures in children. Pain, 62, 3−9. Janse, A. J., Sinnema, G., Uiterwaal, C. S., Kimpen, J. L., & Gemke, R. J. (2005). Quality of life in chronic illness:
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Perceptions of parents and paediatricians. Archives of Disease in Childhood, 90, 486−491. Kashikar-Zuck, S., Goldschneider, K. R., Powers, S. W., Vaught, M. H., & Hershey, A. D. (2001). Depression and functional disability in chronic pediatric pain. Clinical Journal of Pain, 17, 341−349. Konijnenberg, A. Y., de Graeff-Meeder, E. R., van der Hoeven, J., Kimpen, J. L., Buitelaar, J. K., Uiterwaal, C. S., et al. (2006). Psychiatric morbidity in children with medically unexplained chronic pain: Diagnosis from the pediatrician's perspective. Pediatrics, 117, 889−897. Kuttner, L. (1989). Management of young children's acute pain and anxiety during invasive medical procedures. Pediatrician, 16, 39−44. Logan, D. E., & Curran, J. A. (2005). Adolescent chronic pain problems in the school setting: Exploring the experiences and beliefs of selected school personnel through focus group methodology. Journal of Adolescent Health, 37, 281−288. Lynch, A. M., Kashikar-Zuck, S., Goldschneider, K. R., & Jones, B. A. (2007). Sex and age differences in coping styles among children with chronic pain. Journal of Pain and Symptom Management, 3, 208−216. Malleson, P. N., Connell, H., Bennett, S. M., & Eccleston, C. (2001). Chronic musculoskeletal and other idiopathic pain syndromes. Archives of Disease in Childhood, 84, 189−192. McMurtry, C. M., McGrath, P. J., Asp, E., & Chanbers, C. T. (2007). Parental reassurance and pediatric procedural pain: A linguistic description. Journal of Pain, 8, 95−101. Megel, M. E., Houser, C. W., & Gleaves, L. S. (1998). Children's responses to immunizations: Lullabies as a distraction. Issues in Comprehensive Pediatric Nursing, 21, 129−145. Nunnally, J. C., & Bernstein, I. R. (1994). Psychometric theory, 3rd ed. New York: McGraw-Hill. Palermo, T. M. (2000). Impact of recurrent and chronic pain on child and family daily functioning: A critical review of the literature. Journal of Developmental and Behavioral Pediatrics, 21, 58−69. Perquin, C. W., Hazebroek-Kampschreur, A. A. J. M., Hunfeld, J. A. M., et al. (2000). Pain in children and adolescents: A common experience. Pain, 87, 51−58. Perquin, C. W., Hunfeld, J. A., Hazebroek-Kampschreur, A. A., van Suijlekom-Smit, L. W., Passchier, J., Koes, B. W., et al. (2001). Insights in the use of health care services in chronic benign pain in childhood and adolescence. Pain, 94, 205−213. Powers, S. W., Patton, S. R., Hommel, K. A., & Hershey, A. D. (2004). Quality of life in paediatric migraine: Characterization of age-related effects using PedsQL 4.0. Cephalalgia, 24, 120−127. Sallfors, C., Hallberg, L. R., & Fasth, A. (2004). Well-being in children with juvenile chronic arthritis. Clinical and Experimental Rheumatology, 22, 125−130. Schiff, W. B., Holtz, K. D., Peterson, N., & Rakusan, T. (2001). Effect of an intervention to reduce procedural pain and distress for children with HIV infection. Journal of Pediatric Psychology, 26, 417−427. Schulz, M. S., & Masek, B. J. (1996). Medical crisis intervention with children and adolescents with chronic pain. Professional Psychology Research and Practice, 27, 121−129. Schwimmer, J. B., Burwinkle, T. M., & Varni, J. W. (2003). Health-related quality of life of severely obese children and adolescents. Journal of the American Medical Association, 289, 1813−1819. Seid, M., Varni, J. W., Rode, C. A., & Katz, E. R. (1999). The pediatric cancer quality of life inventory: A modular approach to measuring health-related quality of life in children with cancer. International Journal of Cancer Supplement, 12, 71−76. Sporrer, K. A., Jackson, S. M., Agner, S., Laver, J., & Abboud, M. R. (1994). Pain in children and adolescents with sickle cell anemia: A prospective study utilizing self-reporting. American Journal of Pediatric Hematoogt Oncology, 16, 219−224.
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SPSS Inc. (2006). SPSS Base 15.0 for Windows User's Guide. Chicago, IL: SPSS Inc. Varni, J. W., Burwinkle, T. M., Katz, E. R., Meeske, K., & Dickinson, P. (2002). The PedsQL in pediatric cancer: Reliability and validity of the Pediatric Quality of Life Inventory generic core scales, multidimensional fatigue scale, and cancer module. Cancer, 94, 2090−2106. Varni, J. W., Burwinkle, T. M., & Seid, M. (2006). The PedsQL 4.0 as a school population health measure: Feasibility, reliability, and validity. Quality of life research: An international journal of quality of life aspects of treatment, care and rehabilitation, 15, 203−215. Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics, 3, 329−341. Varni, J. W., Seid, M., Knight, T. S., Uzark, K., & Szer, I. S. (2002). The PedsQL 4.0 generic core scales: Sensitivity, responsiveness, and impact on clinical decision-making. Journal of Behavioral Medicine, 25, 175−193. Varni, J. W., Seid, M., & Kurtin, P. S. (2001). The PedsQL 4.0: Reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy patient populations. Medical Care, 39, 800−812.
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Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the Pediatric Quality of Life Inventory. Medical Care, 37, 126−139. Varni, J. W., Seid, M., Smith Knight, T., Burwinkle, T., Brown, J., & Szer, I. (2002). The PedsQL in pediatric rheumatology: Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory generic core scales and rheumatology module. Arthritis and Rheumatism, 46, 714−725. Vetter, T. R. (2008). A clinical profile of a cohort of patients referred to an anesthesiology-based pediatric chronic pain medicine program. Anesthesia & Analgesia, 106, 786−794. Virtanen, R., Aromaa, M., Rautava, P., Metsahonkala, L., Anttila, P., Helenius, H., et al. (2002). Changes in headache prevalence between pre-school and pre-pubertal ages. Cephalalgia, 22, 179−185. Wiendels, N. J., van der Geest, M. C., Neven, A. K., Ferrari, M. D., & Laan, L. A. (2005). Chronic daily headache in children and adolescents. Headache, 45, 678−683. Youssef, N. N., Murphy, T. G., Langseder, A. L., & Rosh, J. R. (2006). Quality of life for children with functional abdominal pain: A comparison study of patients' and parents' perceptions. Pediatrics, 117, 54−59.
The aim of this study was to investigate the health-related quality of life (HRQOL) of children and adolescents with chronic pain. Sixty-nine participants (53 girls and 16 boys, 8–18 years old) were recruited, along with their caregivers, from an outpatient pain management clinic. Participants completed questionnaires regarding the child's pain intensity and HRQOL (physical, emotional, social, and school functioning). Findings indicated that children with chronic pain report significantly lower HRQOL scores compared to population-based normative data and data of children with other chronic illnesses. Lower levels of pain were associated with higher HRQOL scores. In addition to targeting pain management, interventions focused on emotional health are necessary to enhance health outcomes for children with chronic pain. © 2009 Elsevier Inc. All rights reserved. Key words: Pediatrics; Chronic pain; Health-related quality of life
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VER THE PAST decade, there has been increasing evidence that a child's daily function may be largely affected by chronic pain (Bursch, Joseph, & Zeltzer, 2003; Bursch, Walco, & Zeltzer, 1998; Dunn-Geier, McGrath, Rourke, Latter, & D'Astous, 1986; Palermo, 2000). Chalkiadis (2001) noted in an investigation that 207 children and adolescents referred to a multidisciplinary pediatric pain management clinic evidenced pain-related disability, including school absenteeism (95%), inability to participate in sports (90%), and sleep disruptions (71%). However, few studies have examined the severity of this impact, particularly on health-related quality of life (HRQOL) in a pediatric population seeking treatment of chronic pain. The etiology of pathological chronic pain is often unknown, thus presenting a challenge for clinicians when attempting to prescribe a specific treatment (Konijnenberg et al., 2006). During childhood, approximately 5% of school-aged
Journal of Pediatric Nursing, Vol 24, No 2 (April), 2009
From the Department of Anesthesiology Critical Care Medicine, Pediatric Pain Management Clinic, Comfort Pain Management and Palliative Care Program, Childrens Hospital Los Angeles, Keck School of Medicine, University of Southern California, Los Angeles, CA; Department of Anesthesiology Critical Care Medicine, Childrens Hospital Los Angeles, Los Angeles, CA; USC/UCEDD Mental Health Services and Cardiothoracic Transplant Programs, Pediatric Psychology Program Area Lead, Childrens Hospital Los Angeles, Keck School of Medicine, University of Southern California, Los Angeles, CA; Children's Medical Center Dallas, Southwestern Comprehensive Sickle Cell Center, University of Texas Southwestern Medical Center at Dallas; School Transition and Re-entry (STAR) Program, Center for Cancer and Blood Diseases, Childrens Hospital Los Angeles, Los Angeles, CA; Comprehensive Pain Services, Nationwide Children’s Hospital, Columbus, OH. Corresponding author. Department of Anesthesiology Critical Care Medicine, Children's Hospital Los Angeles, Keck School of Medicine, University of Southern California, 4650 Sunset Blvd., MS #12, Los Angeles, CA 90027-6062. E-mail: [email protected] 0882-5963/$ - see front matter © 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.pedn.2008.07.003
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children experience recurrent abdominal pain, 5%–10% experience chronic headaches, and 15% experience musculoskeletal pains (Dangel, 2005), with many patients failing to receive proper treatment for their condition (Bandell-Hoekstra et al., 2002; Janse, Sinnema, Uiterwaal, Kimpen, & Gemke, 2005; Perquin et al., 2001; Sallfors, Hallberg, & Fasth, 2004; Virtanen et al., 2002; Wiendels, van der Geest, Neven, Ferrari, & Laan, 2005). Chronic pain can also co-occur with an underlying medical illness such as cancer, sickle cell disease, or a rheumatologic condition (Hunfeld et al., 2001; Malleson, Connell, Bennett, & Eccleston, 2001; Sporrer, Jackson, Agner, Laver, & Abboud, 1994). In addition to noted physical concerns, research has also documented functional disability and psychological distress among pediatric patients with chronic pain. These include patients with gastrointestinal issues (e.g., functional abdominal pain and inflammatory bowel disease; Youssef, Murphy, Langseder, & Rosh, 2006), rheumatologic problems (Brunner et al., 2004), and cancerrelated pain (Seid, Varni, Rode, & Katz, 1999; Varni, Burwinkle, Katz, Meeske, & Dickinson, 2002). As much as 95% of children with chronic pain miss a considerable number of school days (Chalkiadis, 2001), and their attendance is marked by painful episodes, impaired academic function, and teachers who are not adequately equipped to handle these situations (Logan & Curran, 2005). In addition, children with chronic pain are frequently hospitalized and exposed to stressful medical environments and procedures, which in turn can interfere with the achievement of ageappropriate developmental milestones (Schulz & Masek, 1996). Health-related quality of life, which assesses the impact of chronic illness on daily functional outcomes in a patient's life, is increasingly recognized as a valuable measure. A comprehensive and multidimensional construct, HRQOL is defined as an individual's subjective perception of his or her functioning and emotional state. In the pediatric literature, HRQOL is commonly evaluated using the Pediatric Quality of Life Inventory (PedsQL 4.0, Leon, France; Varni, Seid, & Rode, 1999), which specifically assesses physical, emotional, social, and school functioning in children and adolescents. HRQOL has been evaluated in samples of healthy children (Varni, Seid, & Kurtin, 2001; Varni, Burwinkle, Seid, & Skarr, 2003; Varni, Burwinkle, & Seid, 2006) and those with chronic
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illness (Varni, Burwinkle, et al., 2002; Varni, Seid, et al., 2002; Varni, Seid, Knight, Uzark, & Szer, 2002). Only a handful of studies, however, have used the PedsQL to assess HRQOL in children and adolescents with chronic pain (Connelly & Rapoff, 2006; Youssef et al., 2006; Vetter, 2008). Previous investigations of children with chronic pain and health-related outcomes have revealed significant effects of age. Age has been shown to be associated with coping in children with chronic pain (Lynch, Kashikar-Zuck, Goldschneider, & Jones, 2007) and poor HRQOL in children with migraine headaches (Powers, Patton, Hommel, & Hershey, 2004). Specifically, Powers et al. (2004) suggest that older children with migraine headaches may have more impaired HRQOL (i.e., lower school functioning) than younger children. However, no specific causes for these age effects have been posited. The purpose of the current study was to examine HRQOL in children and adolescents with chronic pain seeking outpatient pain management services from an urban children's hospital compared to the PedsQL 4.0 population-based normative data and published data on children and adolescents with cancer and rheumatologic conditions. This article explores the effects of pediatric chronic pain on HRQOL by providing multidimensional assessment and comparisons with published data in pediatric oncology and rheumatologic conditions to benchmark the findings (Varni, Burwinkle, et al., 2002; Varni, Seid, Smith Knight, et al., 2002). The investigators hypothesize that children seeking treatment of chronic pain will be at risk for poor HRQOL. In addition, the investigators expect these children to self-report HRQOL data similar to published data on children with specific pediatric pain-related conditions (Connelly & Rapoff, 2006; Youssef et al., 2006; Vetter, 2008). Secondary exploratory analyses will examine the relationships between age, gender, pain intensity, and HRQOL. MATERIALS AND METHODS
Participants and Settings All pediatric patients seeking outpatient pain management services were screened for participation in this study at their initial face-to-face intake with the psychologist (principal investigator) and the attending pain physician (coinvestigator). Eligible participants were English-
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speaking children and adolescents between the ages of 8 and 18 years and their caregivers: a parent or legal guardian. Intake data were collected using standardized pencil-and-paper measures. Both the child's and caregiver's self-report measures were collected to examine HRQOL and to explore concordance rates across all measures of interest. If more than one caregiver was present at the interview, the child's primary caregiver completed the forms; the primary caregiver was defined as the parent or legal guardian who spent the most time with the child. Participants were recruited from January 2003 through November 2007. Informed consent was obtained from all participants. The hospital's institutional review board approved all study procedures in accordance with requirements established by the U.S. Department of Health and Human Services. Exclusion criteria for patients were determined as follows: (a) they met criteria for a developmental disability or had cognitive or neurological deficits that would prevent them from comprehending and completing the self-report assessment questionnaires (e.g., mental retardation and organic brain dysfunction); (b) they were alcohol or drug dependent; or (c) they were in acute psychiatric distress (defined as a danger to themselves or others), as indicated by suicidality, homicidality, or psychosis. All eligible participants and their primary caregivers were asked to complete the study measures at the time of consent, which occurred at the end of their initial evaluation. Families facing time restraints at the clinic (e.g., returning to work or school) were allowed to complete the measures at home within the next 48 hours to minimize potential treatment effects. Regardless of the setting, children and their caregivers were instructed to complete the measures separately from one another.
Measures Pain Questionnaire Children completed the pain questionnaire to assess their pain perception for the least, most, or usual pain experienced in the past 7 days. The questionnaire included assessment of pain frequency, intensity, and location. Pain intensity was measured using a 10-cm Visual Analog Scale (VAS) ranging from 0 (no pain) to 10 (worst pain imaginable). Child- and caregiver-reported scores were moderately concordant for all indices: least pain experienced (r = .26), most pain experienced
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(r = .13), and usual pain experienced (r = .31). When the child's and caregiver's responses were further examined, pain intensity scores for both children and caregivers had normal distributions for measures of least, usual, and worst daily pain, with children reporting worse pain intensity than do caregivers. The child-reported worst pain intensity scores ranged from 4 to 10 and were negatively skewed (−1.5). The PedsQL 4.0 Measurement Model The PedsQL measurement model is composed of developmentally appropriate generic core scales and disease-specific modules that measure HRQOL for children and adolescents aged 2–18 years (Varni et al., 1999). Both the child's self-report and proxyreport versions of the questionnaires are available. The PedsQL uses a 5-point Likert scale in which children and caregivers rate how much a problem each item has been for the child over the past 7 or 30 days (0 = never a problem, 1 = almost never a problem, 2 = sometimes a problem, 3 = often a problem, and 4 = almost always a problem; Varni et al., 1999). Responses are reverse scored and linearly transformed to a 0–100 scale, with higher scores indicating better HRQOL (Varni et al., 1999; Varni et al., 2002). The PedsQL 4.0 Generic Core Scales The PedsQL 4.0 generic core scales (23 items) measure physical health (8 items, α = .91 for child report and α = .79 for proxy report), emotional functioning (5 items, α = .80 for child report and α = .82 for proxy report), social functioning (5 items, α = .70 for child report and α = .78 for proxy report), and school functioning (5 items, α = .82 for child report and α = .77 for proxy report; Varni et al., 2002). The total HRQOL scale score is a summary score taking into account every subscale, (23 items, α = .93 for child report and α = .89 for proxy report; Varni et al., 2002). Varni and colleagues have established at-risk cutoff scores indicating poor HRQOL for the PedsQL 4.0 core scales. These scores were determined by approximating 1-standard deviation below mean scores for a normative sample of 5,972 healthy children aged 5–18 years and 10,070 caregivers of children aged 2–18 years (Schwimmer, Burwinkle, & Varni, 2003; Varni et al., 2003). Child- and caregiver-reported scores on the PedsQL 4.0 generic core scales were moderately to highly concordant (p b .01) for all indices: total HRQOL (r = .65), physical functioning (r = .60),
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emotional functioning (r = .62), social functioning (r = .60), and school functioning (r = .60).
Data Analyses Descriptive statistics and bivariate correlations were used to examine the data. The children'/ adolescents' (n = 66) and their primary caregivers' (n = 69) total HRQOL and subscale HRQOL means were referenced against the established HRQOL at-risk mean scores and two clinical pediatric cohorts: oncology (n = 219) and pediatric rheumatology (n = 231) patients. One-sample t tests were used to compare the current study population to the sample means in the oncology and rheumatology samples. Internal consistency reliability scale was determined by calculating the Cronbach's alpha coefficient (Cronbach, 1951; Schwimmer et al., 2003; Varni et al., 2003). Independent t tests were used to test for age and gender differences in pain intensity and all PedsQL scales. Correlations were then calculated with two-tailed Pearson product–moment correlations to look at the relationships between the child's age, pain intensity, and all PedsQL scales. All statistical testing used a significance level of p b .05. A power analysis based on the correlations indicates that, assuming a medium effect size of .40, a sample of 45 is necessary to obtain power equal to .80 and that a sample of 60 will provide power equal to .90 (Cohen, 1988). Statistical analyses were conducted using SPSS Version 15.0 for Windows (Statistical Package for the Social Sciences, 1998; Chicago, IL). RESULTS
Participants Sixty-nine child–caregiver dyads participated in the study. Fifty-three girls (77%) and 16 boys (23%) reported an average age of 13.7 years (SD = 2.6 years). Participants included 21 children (13 girls and 8 boys) and 48 adolescents (40 girls and 8 boys). Participants reported daily usual pain intensity (M = 6.1, SD = 1.9), worst daily pain intensity (M = 8.8, SD = 1.5), and least daily pain intensity (M = 3.0, SD = 2.4) on a 10-cm VAS ranging from 0 (no pain) to 10 (worst pain imaginable). Twenty-nine percent reported pain in at least three sites; these sites included head, arm/ leg, abdomen, back, and chest. In addition to experiencing chronic pain symptoms, approximately 28% of the participants were diagnosed
with an additional chronic illness, such as lupus, sickle cell disease, spina bifida, and cancer, as confirmed by the medical chart review and medical history during the initial interview with the attending pain physician and psychologist. The children in the current sample reflect the typical pediatric population with outpatient chronic pain at a West Coast tertiary care children's hospital: Caucasian (55.1%), Latino (23.2%), African American (5.8%), Asian/Pacific Islander (1.4%), and other ethnic backgrounds (14.5%). Ninety-four percent of the caregiver questionnaires were completed by female caregivers (M = 46 years, SD = 6.6 years). Most of the caregivers were married (67.6%, n = 46) and had completed some post-high school education (78%, n = 53). Ninety-six child–caregiver dyads were approached to participate in this study before gathering 69 sets of completed measures. Nineteen sets were not returned, 3 sets did not have a complete child battery, 1 set did not have a complete caregiver battery, 2 child–caregiver dyads withdrew, and 2 families declined to participate. Participants who completed the measures were not significantly different than the 27 noncompleters with regard to age, gender, or ethnicity.
Health-Related Quality of Life Scores and At-Risk Status Health-related quality of life outcomes were evaluated on the entire sample (Table 1). All child and caregiver subscales and total scores met or exceeded the statistical minimum reliability standard of 0.70 for individual or group comparisons (Nunnally & Bernstein, 1994). Child-reported physical functioning and total HRQOL met the 0.90 recommendations for individual comparisons (Nunnally & Bernstein, 1994). Descriptive findings detailing child- and caregiver-reported measures of HRQOL of the children with chronic pain are displayed in Table 1. Child and caregiver scores from the PedsQL 4.0 are displayed alongside established PedsQL at-risk cutoff scores (Varni et al., 2003) and those of children with cancer (Varni, Burwinkle, et al., 2002) and rheumatologic conditions (Varni, Seid, Smith Knight, et al., 2002; Table 1). On the basis of child and caregiver self-reports, children in this chronic pain sample were at risk for poor total HRQOL and physical, emotional, and school functioning. Social functioning was the only HRQOL subscale that did not meet the criteria for at-risk status according to both child and caregiver
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Table 1. Child- and Caregiver-Reported HRQOL, At-Risk Status, and Group References of Children With Cancer and Rheumatologic Conditions Child report PedsQL 4.0 generic core scales
Total scale score Physical functioning Emotional functioning Social functioning School functioning
Current study
Previously published results
Chronic pain sample, M (SD), n = 65
59.5 (20.0) ⁎ 52.5 (25.8) ⁎ 53.9 (23.0) ⁎ 76.3 (19.4) 59.4 (25.1) ⁎
At-risk cutoff score
69.71 72.98 59.57 66.61 62.99
Oncology sample, M (SD), n = 219
72.2 71.8 71.8 76.8 68.5
Rheumatology sample, M (SD), n = 231
(16.4) (21.8) (21.4) (20.3) (19.7)
72.1 68.1 70.9 80.8 71.4
(16.9) (22.5) (22.1) (18.3) (18.9)
Caregiver report PedsQL 4.0 generic core scales
Current study
Previously published results
Chronic pain sample, M (SD), n = 64
Total scale score Physical functioning Emotional functioning Social functioning School functioning
54.1 (18.9) ⁎ 52.0 (24.3) ⁎ 48.0 (22.5) ⁎ 66.7 (23.7) 51.5 (24.4) ⁎
At-risk cutoff score
65.42 63.28 63.29 62.07 56.75
Oncology sample, M (SD), n = 336
69.7 68.8 67.5 75.6 66.4
Rheumatology sample, M (SD), n = 244
(19.2) (25.0) (20.3) (20.6) (23.2)
71.0 66.7 69.0 77.5 73.4
(18.5) (24.1) (21.4) (20.1) (21.1)
Note: The current study sample scored significantly lower HRQOL scores on all subscales with the exception of social functioning when compared to the oncology and rheumatology samples. In addition, all subscales with the exception of social functioning reflect means that fall below the at-risk cutoff score (for impaired HRQOL) established by subtracting 1 standard deviation from the mean scores of the population-based normative sample of healthy children and their caregivers. Data from Varni, Burwinkle, et al., 2002; Varni, Seid, Smith Knight, et al., 2002; Varni et al., 2003. ⁎p b .01. Represents significant differences between the current study sample and previously published oncology and rheumatology samples.
reports. One-sample t-tests revealed that children and caregivers in this sample also reported significantly lower HRQOL scores (p b .01) on all subscales, except social functioning, when compared to the HRQOL scores from previous studies on children with cancer (Varni, Burwinkle, et al., 2002) and rheumatoid conditions (Varni, Seid, Smith Knight et al., 2002).
Relationships Between Age, Gender, Pain, and HRQOL Secondary exploratory analyses revealed that adolescents (13–18 years) reported lower scores than did children (8–12 years) on reports of Table 2. Significant Age Effects Child report (PedsQL 4.0 generic core scales)
Total HRQOL Children (8–12 years) Adolescents (13–18 years) Emotional functioning Children (8–12 years) Adolescents (13–18 years)
Pain sample, M (SD), n = 21 children and n = 44 adolescents
Pain sample, M (SD), n = 65
59.5 (20.0) 66.6 (17.1) 56.1 (20.6) 53.9 (23.0) 63.3 (17.1) 49.4 (24.2)
Note: All measures of HRQOL were assessed for age and gender effect. This table displays the significant effects revealed by the analyses. The third column presents HRQOL scores for the entire sample, not accounting for age effects.
emotional functioning (t = 2.36, p b .05) and total HRQOL (t = 2.09, p b .05); however, no other age or gender differences on pain scores or HRQOL were noted (Table 2). The sample was then collapsed across age, and Pearson product–moment correlations were conducted to examine overall age effects on measures of pain and HRQOL. Age was significantly related to physical functioning (r = −.26, p b .05), indicating that physical functioning decreased as a function of age. All other age-related correlations were not significant (Table 3). Least pain experienced was negatively associated with emotional (r = −.25, p b .05) and physical (r = −.33, p b .01) functioning. An inverse relationship was found between most pain experienced and emotional functioning (r = −.28, p b .05). Gender effects were examined using Spearman rank order correlations, which revealed no significant relationship between gender and all measures of pain intensity and HRQOL. DISCUSSION The current findings highlight the profound functional impairment that children and adolescents experience because of living with chronic pain. Although previous studies have reported poor daily function for pediatric patients with chronic pain, this particular investigation points to the exigency
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GOLD ET AL Table 3. Relationships Between Age, Pain, and HRQOL
1. Age 2. Least pain 3. Most pain 4. Usual pain 5. Physical functioning 6. Emotional functioning 7. Social functioning 8. School functioning 9. Total HRQOL
1
2
3
1 .08 .00 .16 −.26 ⁎ −.30 ⁎
1 .24 .51 ⁎⁎ −.25 ⁎ −.33 ⁎⁎
1 .46 ⁎⁎ −.11 −.28 ⁎
−.09 −.20 −.27 ⁎
.02 .01 −.19
−.13 −.17 −.19
4
5
6
7
8
9
1 −.12 .25 −.08 .00 −.13
1 .40 ⁎⁎ .55 ⁎⁎ .58 ⁎⁎ .92 ⁎⁎
1 .56 ⁎⁎ .43 ⁎⁎ .81 ⁎⁎
1 .45 ⁎⁎ .78 ⁎⁎
1 .82 ⁎⁎
1
⁎p b .05. ⁎⁎p b .01.
of the situation within a general treatment-seeking population. In support of our primary hypothesis, children and adolescents with chronic pain report lower HRQOL scores than the population-based normative means. All children and adolescents selfreported HRQOL scores at or below the at-risk cutoff for all measures of HRQOL except for social functioning, indicating significant HRQOL impairment. In addition, the current sample self-reported HRQOL scores significantly lower than did patients with rheumatologic conditions (Varni, Seid, Smith Knight, et al., 2002) and cancer-related pain (Varni, Burwinkle, et al., 2002). Contrary to the second hypothesis, expecting that the current sample would self-report HRQOL data similar to other published data on children with specific pediatric-pain-related conditions (i.e., functional abdominal pain, irritable bowel disease, and gastroesophageal reflux disease; Youssef et al., 2006), the current sample scored an average of 20 points lower than children with these conditions on all measures of HRQOL except social functioning. As expected, secondary analyses revealed that least pain experienced was negatively associated with HRQOL outcomes. Specifically, least pain was related to better physical and emotional functioning. In addition, most pain experienced was related to declines in HRQOL (emotional functioning), confirming previous findings indicating an inverse relationship between chronic pain and HRQOL (Powers et al., 2004). These findings clearly highlight the negative effects of chronic pain on HRQOL and the need for intervention. Because many patients with pediatric functional pain conditions lack definitive clinical findings (i.e., physical, radiological, or laboratory) their medical illness and subsequent functional impairment can often be misdiagnosed, mistreated, or even neglected (Bandell-Hoekstra et al., 2002; Janse et al., 2005; Perquin et al., 2001; Virtanen et al.,
2002; Wiendels et al., 2005). If not well understood or treated, this population will continue to be at risk for further problems with daily function, including difficulty with school, family, and peer interactions. This study empirically validates clinical observations that children with chronic pain report significant impairment in not only school ability but also daily physical and emotional functioning. Given the current findings, there is a great need for clinicians to consider comprehensive treatment protocols that aim to reduce physical and emotional correlates of pain while promoting increased functioning. Encouraging clinicians to move beyond reliance on clearly defined physical or structural findings may contribute to improved functional outcomes in this patient population. Although both children and adolescents reported impairments in total HRQOL and emotional functioning, adolescents were significantly more impaired in these areas than were children. These differences may be accounted for by age-specific developmental processes as adolescents may be more aware of the impact of the illness on their physical and emotional well-being. In addition, adolescents may be exposed to a greater number of activities than children, thus highlighting their disability (Powers et al., 2004). As this is one of few studies examining age-related effects on HRQOL in children and adolescents seeking treatment of chronic pain, additional research is needed to fully understand the possible determinants of age on specific domains of function.
Limitations Principal limitations of this study include a crosssectional design and a small sample size. Although one could argue that these results cannot be generalized, the higher incidence of chronic pain in girls as opposed to boys in our sample is highly representative of the general pediatric population
PEDIATRIC CHRONIC PAIN AND HEALTH-RELATED QUALITY OF LIFE
with chronic pain (Kashikar-Zuck, Goldschneider, Powers, Vaught, & Hershey, 2001; Perquin et al., 2000; Vetter, 2008). In addition, the sample's ethnic diversity reflects that of an urban public outpatient pain management clinic for children and adolescents on the West Coast. Although the current study provides a naturalistic perspective of a general population seeking treatment of chronic pain, these results do not reflect a disease-specific population but rather a heterogeneous sample with regard to diagnosis, sites of pain, and symptoms. Of additional concern is the fact that patients were asked to participate in the current study during their first visit to the pain management service. Because patients may seek care during periods when pain is most distressing, the participants in this study may report particularly high pain intensity and low HRQOL relative to other sampling periods. Likewise, during admission to a pain service, patients may be highly motivated to report great distress to communicate the severity of their concerns to the health care provider. This selection factor may bias the results toward poorer health outcomes and detract from the validity of the comparison with the oncology and rheumatology samples, which may have been collected under different circumstances. In addition, because all patients evaluated in the outpatient pediatric pain management clinic were in a significant amount of pain, these findings cannot be generalized to less affected children within the community. The current study also failed to assess the following confounding variables: the presence of comorbid psychiatric conditions, the current use of pain medications or low-dose antidepressants prior to this clinic evaluation, and the number of previous pain clinics attended. Although these factors may have contributed to diminished functioning, they only underscore the complex and often difficult life circumstances of a child or adolescent with chronic pain. Finally, most study participants completed measures at home, without the supervision of one of the study investigators. Although children and caregivers were instructed to complete the questionnaires independently of one another, it is unclear whether they complied. For future investigations, the use of structured clinical interviews in addition to self-reported questionnaires deserves consideration.
Clinical Considerations Nurses are in a unique position to assess and assist children in the management of pain (Table 4).
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They can make recommendations for ongoing pain management, which can include medication, stress management, psychotherapy, and/or other integrative practices (e.g., physical therapy, acupuncture, and massage). Whether at the bedside or in a school setting, nurses can assist and advocate for children with chronic pain in their battle against documented HRQOL impairments. For example, in a school setting, nurses can educate family members about the advantages of an individualized education plan (IEP), which establishes provisions for children enrolled in school (e.g., rest time, modified physical education, partial home schooling, etc.) to manage the ongoing disability associated with painful episodes. In the hospital setting, nurses can help prepare children for painful medical procedures by explaining the procedure in a developmentally appropriate language (Harrison, 1991). Advocacy begins with a comprehensive assessment, which identifies pain history (intensity, frequency, and quality), previous and current treatments (e.g., psychotherapy, physical therapy/ occupational therapy, medications), the child's and family's medical and psychiatric history, and functional outcomes (e.g., HRQOL, school, and social functioning). A detailed pain assessment highlights the complex multifactorial nature of chronic pain, which includes biological, psychological, and social components. The identification of the family's medical and psychiatric history and dynamics is also useful for nurses in understanding the family's role in increasing or decreasing pain-associated distress, anxiety, and/or disability for the child. In hospital settings, nurses can offer creative solutions to decrease the negative effects of pain by promoting the use of simple distraction methods (e.g., reading or providing toys and bubbles; Schiff, Holtz, Peterson, & Rakusan, 2001; Carlson, 2000; Kuttner, 1989), relaxation techniques (e.g., diaphragmatic breathing and guided imagery; Blount et al., 1992; Cohen, 2002; Jay, Elliot, Fitzgibbons, & Siegel, 1995), physical strategies (e.g., hydration or hot–cold packs), or parent- and nurse-coaching models (Gonzalez & Routh, 1993; McMurtry, McGrath, Asp, & Chanbers, 2007; Cohen, Blount, & Panopoulos, 1997). It is also beneficial for nurses to collaborate with child life specialists (Bandstra et al., 2008) and trained mental health professionals (i.e., social workers and psychologists) to evaluate the child's existing coping mechanisms and to foster the use of healthy adaptive coping techniques. Nurses advocating for treatments that address the
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GOLD ET AL Table 4. Coping Strategies Helpful to the Practicing Nurse Coping technique
Psychoeducation Preparation for medical procedures IEP
Location
Hospital
Explaining procedures to the child in a language that they can understand may make the child more comfortable. IEPs can educate the school (administrators and teachers) about the serious nature of the child's pain and associated impairments.
School
Relaxation exercises Diaphragmatic breathing
Hospital/School
Guided imagery
Hospital/School
Distraction methods Reading Watching TV, cartoons Toys (e.g., kaleidoscopes) Music (e.g., audiotaped lullaby) Mental arithmetic Bubbles
Reason
Deep breathing from the diaphragm rather than the chest can minimize stress and anxiety. Having the child picture a less stressful environment can help calm the child down.
Hospital
Distraction techniques that the child can do independently can be very helpful.
Hospital
Interacting with the child to decrease focus on their pain can be beneficial as well.
Coaching Maternal talk, parental reassurance
Hospital
Nurse coaching
Hospital
A calm maternal voice has demonstrated success in relaxing a child during medical procedures. Nurse coaching has been found to be more practical and cost effective in reducing child anxiety.
Physical strategies Hydration Hot–Cold packs
Hospital/School Hospital/School
Plenty of water can help minimize painful episodes. Applying these packs can help alleviate the child's pain.
IEP = individualized education plan. Data from Harrison, 1991; Blount et al., 1992; Jay et al., 1995; Schiff et al., 2001; Cassidy et al., 2002; Carlson et al., 2000; Fowler-Kerry & Lander, 1987; Megel, Houser, & Gleaves, 1998; Elliott & Olson, 1983; Kuttner, 1989; Gonzalez & Routh, 1993; McMurtry et al., 2007; Cohen et al., 1997.
biopsychosocial nature of chronic pain will have the most profound impact on the child's condition, leading to greater function and improved HRQOL. CONCLUSION Although clinicians have long known that children and adolescents with chronic pain suffer from disability related to their pain, this investigation highlights the severity of the impairment across multiple domains of HRQOL. Unless health professionals fully address the needs of children and adolescents with chronic pain, we will continue to witness their functional impairment. Treatment approaches must address symptom management and alleviation. The most effective treatments, however, will also emphasize rehabilitation beyond pain alleviation. Examples include, reintegrating of children into regular schools and
providing education for children and caregivers on daily coping strategies. Future studies may benefit from an examination of co-existing functional problems (e.g., fatigue), coping strategies, and the implementation of family-focused interventions to reduce barriers that impede normal childhood development. Additional longitudinal research with multimodal measurement is recommended to continue exploring functional outcomes and long-term consequences of pediatric chronic pain. Nurses are in a keen position to assist in the assessment of pain and to provide education and referrals for ongoing pediatric pain management. Therefore, the most effective pain management for this population requires nurses and other health care providers to approach treatment with a comprehensive biopsychosocial understanding of pediatric chronic pain and its effects on HRQOL.
REFERENCES Bandell-Hoekstra, I. E., Abu-Saad, H. H., Passchier, J., Frederiks, C. M., Feron, F. J., & Knipschild, P. (2002). Coping and quality of life in relation to headache in Dutch schoolchildren. European Journal of Pain, 6, 315−321.
Bandstra, N. F., Skinner, L., Leblanc, C., Chanbers, C. T., Hollon, E. C., Brennan, D., & Beaver, C. (2008). The role of child like in pediatric pain management: A survey of child life specialists. Journal of Pain, 9, 320−329.
PEDIATRIC CHRONIC PAIN AND HEALTH-RELATED QUALITY OF LIFE
Blount, R. L., Bachanas, P. J., Powers, S. W., Cotter, M. W., Franklin, A., Chaplin, W., et al. (1992). Training children to cope and parents to coach them during routine immunizations: Effects on child, parent, and staff behaviors. Behavioral Therapy, 23, 689−705. Brunner, H. I., Klein-Gitelman, M. S., Miller, M. J., Trombley, M., Baldwin, N., Kress, A., et al. (2004). Health of children with chronic arthritis: Relationship of different measures and the quality of parent proxy reporting. Arthritis and Rheumatism, 51, 763−773. Bursch, B., Joseph, M., & Zeltzer, L. (2003). In N. L. Schechter, C. B. Berde, & M. Yastor (Eds.), Pain-associated disability syndrome; pain in infants, children, and adolescents (pp. 841−849). Philadelphia, PA: Lippincott Williams & Wilkins. Bursch, B., Walco, G. A., & Zeltzer, L. (1998). Clinical assessment and management of chronic pain and pain-associated disability syndrome. Journal of Developmental and Behavioral Pediatrics, 19, 45−53. Carlson, K. L., Broome, M., & Vessey, J. A. (2000). Using distraction to reduce reported pain, fear, and behavioral distress in children and adolescents: A multisite study. Journal of the Society of Pediatric Nurses, 5, 75−85. Cassidy, K. L., Reid, G. J., McGrath, P. J., Finley, G. A., Smith, D. J., Morley, C., et al. (2002). Watch needle, watch TV: Autovisual distraction in preschool immunization. American Academy of Pain Medicine, 3, 108−118. Chalkiadis, G. A. (2001). Management of chronic pain in children. Medical Journal of Australia, 175, 464−479. Cohen, J. (1988). Statistical power analysis for behavioral sciences, 2nd ed. Hillsdale, NJ: Lawrence Earlbaum Associates. Cohen, L. (2002). Reducing infant immunization distress through distraction. Health Psychology, 21, 207−211. Cohen, L. L., Blount, R. L., & Panopoulos, G. (1997). Nurse coaching and cartoon distraction: An effective and practical intervention to reduce parent, and nurse distress during immunizations. Journal of Pediatric Psychology, 22, 355−370. Connelly, M., & Rapoff, M. A. (2006). Assessing healthrelated quality of life in children with recurrent headache: Reliability and validity of the PedsQL 4.0 in a pediatric headache sample. Journal of pediatric psychology, 31, 698−702. Cronbach, L. J. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16, 297−334. Dangel, T. (2005). Management of chronic pain in children. Current Paediatrics, 15, 69−74. Dunn-Geier, B. J., McGrath, P. J., Rourke, B. P., Latter, J., & D'Astous, J. (1986). Adolescent chronic pain: The ability to cope. Pain, 26, 23−32. Elliott, C. H., & Olson, R. A. (1983). The management of children's distress in response to painful medical treatment for burn injuries. Behaviour Research & Therapy, 21, 675−683. Fowler-Kerry, S., & Lander, J. R. (1987). Management of injection pain in children. Pain, 30, 169−175. Gonzalez, J. C., & Routh, D. K. (1993). Effects of maternal distraction versus reassurance on children's reactions to injections. Journal of Pediatric Psychology, 18, 593−604. Harrison, A. (1991). Preparing children for venous blood sampling. Pain, 45, 299−306. Hunfeld, J. A., Perquin, C. W., Duivenvoorden, H. J., Hazebroek-Kampschreur, A. A., Passchier, J., van SuijlekomSmit, L. W., et al. (2001). Chronic pain and its impact on quality of life in adolescents and their families. Journal of Pediatric Psychology, 26, 145−153. Jay, S., Elliott, C. H., Fitzgibbons, I., Woody, P., & Siegel, E. (1995). A comparative study of cognitive behavior therapy versus general anesthesia for painful medical procedures in children. Pain, 62, 3−9. Janse, A. J., Sinnema, G., Uiterwaal, C. S., Kimpen, J. L., & Gemke, R. J. (2005). Quality of life in chronic illness:
149
Perceptions of parents and paediatricians. Archives of Disease in Childhood, 90, 486−491. Kashikar-Zuck, S., Goldschneider, K. R., Powers, S. W., Vaught, M. H., & Hershey, A. D. (2001). Depression and functional disability in chronic pediatric pain. Clinical Journal of Pain, 17, 341−349. Konijnenberg, A. Y., de Graeff-Meeder, E. R., van der Hoeven, J., Kimpen, J. L., Buitelaar, J. K., Uiterwaal, C. S., et al. (2006). Psychiatric morbidity in children with medically unexplained chronic pain: Diagnosis from the pediatrician's perspective. Pediatrics, 117, 889−897. Kuttner, L. (1989). Management of young children's acute pain and anxiety during invasive medical procedures. Pediatrician, 16, 39−44. Logan, D. E., & Curran, J. A. (2005). Adolescent chronic pain problems in the school setting: Exploring the experiences and beliefs of selected school personnel through focus group methodology. Journal of Adolescent Health, 37, 281−288. Lynch, A. M., Kashikar-Zuck, S., Goldschneider, K. R., & Jones, B. A. (2007). Sex and age differences in coping styles among children with chronic pain. Journal of Pain and Symptom Management, 3, 208−216. Malleson, P. N., Connell, H., Bennett, S. M., & Eccleston, C. (2001). Chronic musculoskeletal and other idiopathic pain syndromes. Archives of Disease in Childhood, 84, 189−192. McMurtry, C. M., McGrath, P. J., Asp, E., & Chanbers, C. T. (2007). Parental reassurance and pediatric procedural pain: A linguistic description. Journal of Pain, 8, 95−101. Megel, M. E., Houser, C. W., & Gleaves, L. S. (1998). Children's responses to immunizations: Lullabies as a distraction. Issues in Comprehensive Pediatric Nursing, 21, 129−145. Nunnally, J. C., & Bernstein, I. R. (1994). Psychometric theory, 3rd ed. New York: McGraw-Hill. Palermo, T. M. (2000). Impact of recurrent and chronic pain on child and family daily functioning: A critical review of the literature. Journal of Developmental and Behavioral Pediatrics, 21, 58−69. Perquin, C. W., Hazebroek-Kampschreur, A. A. J. M., Hunfeld, J. A. M., et al. (2000). Pain in children and adolescents: A common experience. Pain, 87, 51−58. Perquin, C. W., Hunfeld, J. A., Hazebroek-Kampschreur, A. A., van Suijlekom-Smit, L. W., Passchier, J., Koes, B. W., et al. (2001). Insights in the use of health care services in chronic benign pain in childhood and adolescence. Pain, 94, 205−213. Powers, S. W., Patton, S. R., Hommel, K. A., & Hershey, A. D. (2004). Quality of life in paediatric migraine: Characterization of age-related effects using PedsQL 4.0. Cephalalgia, 24, 120−127. Sallfors, C., Hallberg, L. R., & Fasth, A. (2004). Well-being in children with juvenile chronic arthritis. Clinical and Experimental Rheumatology, 22, 125−130. Schiff, W. B., Holtz, K. D., Peterson, N., & Rakusan, T. (2001). Effect of an intervention to reduce procedural pain and distress for children with HIV infection. Journal of Pediatric Psychology, 26, 417−427. Schulz, M. S., & Masek, B. J. (1996). Medical crisis intervention with children and adolescents with chronic pain. Professional Psychology Research and Practice, 27, 121−129. Schwimmer, J. B., Burwinkle, T. M., & Varni, J. W. (2003). Health-related quality of life of severely obese children and adolescents. Journal of the American Medical Association, 289, 1813−1819. Seid, M., Varni, J. W., Rode, C. A., & Katz, E. R. (1999). The pediatric cancer quality of life inventory: A modular approach to measuring health-related quality of life in children with cancer. International Journal of Cancer Supplement, 12, 71−76. Sporrer, K. A., Jackson, S. M., Agner, S., Laver, J., & Abboud, M. R. (1994). Pain in children and adolescents with sickle cell anemia: A prospective study utilizing self-reporting. American Journal of Pediatric Hematoogt Oncology, 16, 219−224.
150
SPSS Inc. (2006). SPSS Base 15.0 for Windows User's Guide. Chicago, IL: SPSS Inc. Varni, J. W., Burwinkle, T. M., Katz, E. R., Meeske, K., & Dickinson, P. (2002). The PedsQL in pediatric cancer: Reliability and validity of the Pediatric Quality of Life Inventory generic core scales, multidimensional fatigue scale, and cancer module. Cancer, 94, 2090−2106. Varni, J. W., Burwinkle, T. M., & Seid, M. (2006). The PedsQL 4.0 as a school population health measure: Feasibility, reliability, and validity. Quality of life research: An international journal of quality of life aspects of treatment, care and rehabilitation, 15, 203−215. Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics, 3, 329−341. Varni, J. W., Seid, M., Knight, T. S., Uzark, K., & Szer, I. S. (2002). The PedsQL 4.0 generic core scales: Sensitivity, responsiveness, and impact on clinical decision-making. Journal of Behavioral Medicine, 25, 175−193. Varni, J. W., Seid, M., & Kurtin, P. S. (2001). The PedsQL 4.0: Reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy patient populations. Medical Care, 39, 800−812.
GOLD ET AL
Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the Pediatric Quality of Life Inventory. Medical Care, 37, 126−139. Varni, J. W., Seid, M., Smith Knight, T., Burwinkle, T., Brown, J., & Szer, I. (2002). The PedsQL in pediatric rheumatology: Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory generic core scales and rheumatology module. Arthritis and Rheumatism, 46, 714−725. Vetter, T. R. (2008). A clinical profile of a cohort of patients referred to an anesthesiology-based pediatric chronic pain medicine program. Anesthesia & Analgesia, 106, 786−794. Virtanen, R., Aromaa, M., Rautava, P., Metsahonkala, L., Anttila, P., Helenius, H., et al. (2002). Changes in headache prevalence between pre-school and pre-pubertal ages. Cephalalgia, 22, 179−185. Wiendels, N. J., van der Geest, M. C., Neven, A. K., Ferrari, M. D., & Laan, L. A. (2005). Chronic daily headache in children and adolescents. Headache, 45, 678−683. Youssef, N. N., Murphy, T. G., Langseder, A. L., & Rosh, J. R. (2006). Quality of life for children with functional abdominal pain: A comparison study of patients' and parents' perceptions. Pediatrics, 117, 54−59.