Volume 87, Issue 7 , Pages 928-934, July 2006
Parental Report of Pain and Associated Limitations in Ambulatory Children With Cerebral Palsy
Article Outline
Abstract
Tervo RC, Symons F, Stout J, Novacheck T. Parental report of pain and associated limitations in ambulatory children with cerebral palsy.
Objective
To document parental reports about pain in children with cerebral palsy (CP).
Design
A cross-sectional descriptive study.
Setting
Motion analysis laboratory.
Participants
Seventy-seven ambulatory children with CP (44 boys, 33 girls; age range, 3–17y) presenting as consecutive assessments.
Interventions
Not applicable.
Main Outcome Measures
Parents completed (1) a semistructured interview, (2) the Pediatric Outcome Data Collection Instrument (PODCI), (3) the Child Behavior Checklist (CBCL), (4) the Behavior Rating Inventory of Executive Functioning (BRIEF), and (5) Gillette Functional Assessment Questionnaire. Two dichotomous PODCI pain and comfort questions were estimates of pain frequency and impact.
Results
Sixty-one percent reported “pain over the last week,” and 33% reported “pain interfered with normal activities.” Pain did not differ by topographic classification. Girls had more pain. “Pain that interfered with normal activities” was associated with limitations in activities of daily living and physical education. Social problems and attention problems on the CBCL and the initiate scale on the BRIEF were associated with pain that interfered with activity.
Conclusions
Pain in children with CP is frequent and associated with behavioral and social consequences. Sex is a risk factor; girls experience more pain. Intervention strategies that successfully support transition into adulthood are needed.
Key Words: Cerebral palsy , Pain , Rehabilitation
PAIN IS A COMMON SUBJECTIVE experience for children, and the overall prevalence of chronic pain in children may be 25%.1 El-Metwally et al2 observed that a third of preadolescents may have musculoskeletal pain that persists for a year. This high prevalence of pain is disconcerting because of the associated emotional, social, and financial burdens for the children and their families. Chronic pain frequently results in substantial functional disability in children.3, 4
Pain is a common condition in children with cerebral palsy (CP). A recent community survey5 of parents of children with CP reported that two thirds of the children displayed pain in the month prior to the rating. Although there is a shortage of CP-related pediatric pain studies,6 it appears that pain is common in children with moderate or severe CP, more prevalent with more severe impairment, and is associated with educational and social consequences.7 These findings are consistent with those of Breau et al8 who reported that children with severe cognitive impairments experience pain frequently. Children with the fewest abilities experience the most pain. It is likely that the neurologic impairment associated with CP may alter the neurologic system and consequently the ability to understand and communicate pain.9
It appears that pain is a serious secondary problem for many adults with CP.10, 11, 12 In some study samples, greater than 80% of adults with CP experience pain; common musculoskeletal symptoms include neck pain, low back pain, hip pain, knee pain, and loss of range of motion. Pain in adults with CP shows a significant association with psychologic distress including depression.13, 14 Pain as a part of daily experience influences many lifestyle decisions. Adults with CP characterize pain as having multiple locations, distinctive descriptions, and different implications.15, 16 At times, their pain appears to have unclear causes and consequences. Because of this, reported pain is often idiosyncratic, with little or dissatisfying communication about pain with family, friends, or health care providers.16 Indeed, pain appears to be undertreated in the adult population with CP because of lack of adequate access to health care providers and communicative barriers.15, 16, 17, 18 Untreated pain may have important consequences on physical functioning with pain limiting functioning. Self-reported causes of deterioration in locomotor skills in adults with CP are pain, fatigue, and lack of adapted physical activity.19 More generally, pain is an important indicator of quality of life, and its measurement has been often overlooked in research with vulnerable populations,20 including children with developmental disabilities such as CP. The management of pediatric pain is strikingly different than adults especially when considering a child’s cognitive and developmental status.21
Current surveys of pain in children with CP have audited pain in children with severe intellectual impairments.8, 20, 22, 23, 24 Little comparable information has been collected from families of children with CP without severe intellectual impairments. It is important to include children with a wide range of cognitive, physical, and language impairments to evaluate barriers that may exist in children with different levels of disability.25
In children and adolescents, differentiating organic from functional symptoms is a challenge. Chronic musculoskeletal pain is a common source of pain in children with CP and occurs secondary to spasticity or dystonia.22, 26 Although there are many reasons for pain in children with CP other than musculoskeletal,9, 22, 26, 27 it remains difficult to differentiate nonorganic pain from known organic illness.28 To complicate matters, pain symptoms may be experienced as a defense against emotional stress from achievement either academically or in physical activity. Because pain is a subjective experience and modulated by biologic and other factors such as previous pain episodes, the context of the pain occurrence, fear, anxiety, and other factors,3 it seems reasonable to audit behavior as well as functioning when evaluating a child’s pain.
Attention is probably the most studied variable that modifies a person’s pain experience.29 Chronic pain leads to attention deficits, although the pattern of evidence for attention biases is not consistent.30 Attention is directed to cues of pain as well as pain itself. Persons attend to or from pain and the threat of pain for some reason. Because attention is part of an action-oriented avoidance or escape from harm or danger,31 measures of attention should be part of audit of pain related behaviors. Children with neurologic disorders, including CP, have behavioral problems understood under the broad construct of “executive function.”32 Children with attention deficit hyperactivity disorder (ADHD) display a higher proportion of children with executive dysfunction than children without ADHD.33, 34, 35, 36, 37
A child’s pain is often unrecognized by clinicians.3 Knowledge of behaviors and painful situations recognized by parents may help to better identify and subsequently manage pain in children with CP.5, 7, 22 Parent report is especially important because pain experienced by children with CP is poorly controlled,21 and it is most often that parents or primary caregivers administer and judge the efficacy of treatment. Pain experienced by children with special health care needs or developmental disabilities, like the children under study, are especially difficult to assess. Careful and thorough assessments are necessary when communication is difficult such as the child with a cognitive disability, a severe emotional disturbance, or impaired motor skills. When these children present with pain, credible information can be obtained from a parent or guardian who knows the child well. Observations of behavior may be an acceptable alternative to self-report of pain.38
The purpose of this study was to document associations between parent reports of pain and multiple measures of daily functioning in ambulatory children with CP. It was hypothesized that pain behavior would be related to behavioral problems and difficulties with goal-directed behavior.
Methods
The respondents were parents and/or guardians of children with CP presenting as consecutive assessments to the motion analysis laboratory. Of the 77 respondents, most of the data were collected from fathers (57.1%). Most were married (58.4%), white (89.6%), and employed (78.9%). Table 1 summarizes the composition of the sample. Parents were invited to assist in gathering information, and consent was obtained before any data collection.
Table 1. Family Demographics
| Characteristic | n (N=77) | % |
|---|---|---|
| Sex | ||
| 44 | 57.1 | |
| 33 | 42.9 | |
| Marital status | ||
| 45 | 58.4 | |
| 2 | 2.6 | |
| 13 | 16.9 | |
| 1 | 1.3 | |
| 1 | 1.3 | |
| 15 | 19.5 | |
| Race | ||
| 69 | 89.6 | |
| 8 | 10.4 | |
| Respondent occupation | ||
| 4 | 5.3 | |
| 19 | 25.0 | |
| 20 | 26.3 | |
| 17 | 22.4 | |
| 16 | 21.1 |
Measures
Parents provided information in a semistructured interview regarding demographic characteristics and completed the assessment measures. Table 1 presents the characteristics of the respondents.
All children were referred to the motion analysis laboratory for a clinical evaluation regarding the need for surgical or orthotic intervention or for a baseline assessment of their ambulatory status. The study group was a convenience sample of consecutive children with CP, spanning a range of ages and ambulatory abilities observed in a general population of children with CP who were able to walk. Children with antalgic gait were excluded, as were children with athetosis or ataxia.
All patients had spasticity. Children who were diplegic had lower limbs more involved than upper limbs. Those who were hemiplegic had impairment of their upper and lower limb on 1 side of their bodies. Children with quadriplegia had all 4 limbs involved about equally. Those with triplegia were children whose presentations were asymmetrical and had primarily 3 limbs involved. All children were included in the study regardless of cognitive ability, and 33% of the children had parents who reported that they had limitations because of learning problems. The study received approval from the University of Minnesota Institutional Review Board, and informed consent was obtained from parents.
There were 77 children with CP (44 boys, 33 girls), ages 3.74 to 17.21 (mean ± standard deviation, 9.48±3.30) years. The topographic classifications of the children were as follows: 63.6% of the participants were diplegic, 23.4% were quadriplegic, and 13% were hemiplegic. The most common comorbid conditions parents reported “currently or ever” in their children with CP were developmental delay, 55.8%; vision problem, 42.9%; learning problem, 41.6%; behavior problem, 28.6%; and speech problem, 24.7% (table 2).
Table 2. The Most Common Comorbid Conditions Reported Currently or Ever
| Conditions | n (N=77) | % |
|---|---|---|
| Developmental delay | 43 | 55.8 |
| Vision problem | 33 | 42.9 |
| Learning problem | 32 | 41.6 |
| Behavior problems | 22 | 28.6 |
| Speech problem | 19 | 24.7 |
| Seizure disorder | 10 | 13.0 |
| Mental retardation | 7 | 9.1 |
| Hearing impairment | 4 | 5.2 |
| Sleep problem | 3 | 3.9 |
To measure reported frequency and intensity of pain as well as physical functioning and functional impact, the Pediatric Orthopaedic Society of North America Musculoskeletal Health Questionnaire (also known as the Pediatric Outcomes Data Collection Instrument [PODCI]) was used.39 Further, they completed 9 items on the PODCI comorbidity scale to document conditions that were under treatment or were believed to create limitations for the subjects. To measure behavior problems, the Child Behavior Checklist (CBCL) was used.40 To recognize and measure discrete behaviors that reflect executive function problems in a real-world setting, the Behavior Rating Inventory of Executive Function (BRIEF) was performed.34, 35 The Gillette Functional Assessment Questionnaire (FAQ) measured walking abilities.41
The comfort (pain free) scale of the PODCIThe comfort (pain free) scale of the PODCI, version 2.0,39 was used for collection. The PODCI scales include upper-extremity function, physical function and sports, transfers and mobility, and comfort (pain free). The comfort (pain free) scale, like the other scales, was a continuous variable scored 0 to 100, with 100 representing the least pain.
The 3 questions on the PODCI that comprise the comfort (pain free) scale are (1) “Did pain or discomfort interfere with your child’s activities?” (2) “How much pain has your child had during the last week?” and (3) “During the last week, how much did pain interfere with your child’s normal activities including at home, outside of the home, and at school?” Items 1 and 2 were the primary estimates of pain frequency and impact. The PODCI was normalized with a population of children that included those with CP.
The CBCLBehavior problems were measured by the major caregiver’s or parent’s ratings of his/her child on the CBCL.40 The CBCL consists of 118 behavior problem items on which parents rate their child’s behavior by using 3-point scales of 0 (not true), 1 (somewhat or sometimes true), and 2 (very true or often true). The CBCL provides a total behavior problems score, 2 second-order factor scores (internalizing problems, externalizing problems), and 8 syndrome scores (aggressive behavior, anxious/depressed, attention problems, delinquent behavior, social problems, thought problems, withdrawn, somatic complaints).
The BRIEFThe BRIEF34, 35 measures purposeful or goal-directed functioning and consists of 86 items in 8 nonoverlapping clinical scales and 2 validity scales. The inhibit, shift, and emotional control scales make up the Behavioral Regulation Index. The initiate, working memory, plan/organize, organization of materials, and monitor scales result in the Metacognition Index. The answer sheets use a 3-point scale (never, sometimes, often).
The Gillette FAQThe Gillette FAQ41 is a 10-level parent-report measure that audits a range of walking abilities from nonambulatory to ambulatory in all community settings and terrains. It is a reliable and valid measure specific to the task of walking. It can help document functional change in children with chronic neuromuscular conditions.
Data Reduction
The clinical and at-risk ranges on the CBCL were based on recommendations set by Achenbach.40 For the second-order factors, participants with T scores of 60 or greater were considered at risk, and participants with T scores greater than 63 were considered in the clinical range. For the 8 syndrome dimensions, participants with T scores of 67 or greater were considered at risk, and participants with T scores of 70 or greater were considered in the clinical range. Two pain items—“Did pain or discomfort interfere with your child’s activities?” and “How much pain have you had over the last week?”—were rated on 4- and 6-point Likert scales, respectively. On the 4-point scale, 1 is “most of the time” and 4 is “none of the time.” On the 6-point scale, 1 equals “none” and 6 equals “very severe.” These were recoded into yes-no dichotomous items. Then, these dichotomous responses were used to create 2×2 contingency tables. “Did pain or discomfort interfere with your child’s activities?” and “How much pain has your child had during the last week?” were compared with reports of comorbid conditions and current functioning. Clinically significant BRIEF scores were T scores of 65 or greater.34, 35
Statistical Analyses
SPSSa for Windows was used for data analysis. Descriptive statistics were calculated to describe the groups within the study sample. The Mann-Whitney U test compared comfort (pain free) scores by sex. We used the chi-square to test the strength of association between variables of the frequency and intensity of pain and functioning. We used the Spearman ρ to measure the strength of associations between the rankings of the comfort (pain free) scores and the FAQ scores. Because the research hypothesis is directional (ie, that there is no association between a parent’s perception of his/her child’s pain and functional walking abilities), a 1-tailed P value of less than .05 was considered significant. Analyses of variance (ANOVAs) with Fisher-protected least significant difference post hoc analyses were performed to compare mean of the continuous comfort (pain free) scores among children with CP in the different topographic groups. Univariate ANOVAs were performed to evaluate how comfort (pain free) varies across the comorbid conditions and whether the 2 factors interact. A similar analysis was performed for “Did pain or discomfort interfere with your child’s activities?” and “How much pain has your child had during the last week?” Binary logistic regression was used to identify which purposeful, goal-directed behavior best predicted that pain would interfere with activity. Two-tailed P values of less than .05 were considered significant.
Results
Participants
Pain experiences were common. Sixty-one percent experienced pain over the last week, and, in 33%, the pain interfered with normal activities. Pain did not differ among topographic groups (F64,2=2.64, P=.63). Older children were not any more likely to experience extreme pain (ρ=−.152, P=.234). The results of the Mann-Whitney U test indicated that girls with CP were more likely to experience more pain than boys as reported on the comfort (pain free) scale (z=−2.273, P=.023).
A report of pain correlated with gross motor abilities. There was a significant and fair degree of relation between comfort (pain free) scale scores and FAQ scores (ρ=.278, P=.035). The more positive the comfort (pain free) scale scores were, the less pain was reported and the higher the child’s walking ability.
Children experienced pain that interfered with normal activities (table 3). Specifically, a report that a child’s “pain interfered with normal activities” was associated with the doing of the following: using a fork and spoon (χ21 test=7.55, P=.006), standing while washing (χ12 test=6.053, P=.014), sitting in a regular chair (χ12 test=8.90, P=.003), getting on the toilet (χ12 test=7.10, P=.008), getting out of bed (χ12 test=9.10, P=.003), turning knobs (χ12 test=4.68, P=.03), and participating in physical education (χ12 test=15.74, P=.001). Reported pain was not associated with other PODCI items.
Table 3. Pain Interferes With Functional Activities
| Activities | Pain Interfered With Activity | |||
|---|---|---|---|---|
| No | Yes | |||
| n (n=42) | % | n (n=35) | % | |
| Lift heavy books | 35 | 45.5 | 31 | 40.3 |
| Pour half a gallon of milk | 36 | 46.8 | 32 | 41.6 |
| Open a jar | 27 | 35.1 | 29 | 37.7 |
| Use a fork and spoon⁎ | 10 | 13.0 | 19 | 24.7 |
| Comb hair | 17 | 22.1 | 20 | 26.0 |
| Button buttons | 29 | 37.7 | 29 | 37.7 |
| Put on coat | 19 | 24.7 | 23 | 29.9 |
| Write with a pencil | 23 | 29.9 | 23 | 29.9 |
| Run short distances | 32 | 41.6 | 29 | 37.7 |
| Bicycle | 30 | 39.0 | 27 | 35.1 |
| Climb 3 flights of stairs | 40 | 51.9 | 33 | 42.9 |
| Climb 1 flight of stairs | 27 | 35.1 | 25 | 32.5 |
| Walk more than a mile | 41 | 53.2 | 33 | 42.9 |
| Walk 3 blocks | 35 | 45.5 | 30 | 39.0 |
| Walk 1 block | 21 | 27.3 | 21 | 27.3 |
| Get on a bus | 35 | 45.5 | 30 | 39.0 |
| Need help | 39 | 50.6 | 32 | 41.6 |
| Use assistive devices | 35 | 45.5 | 32 | 41.6 |
| Stand while washing† | 17 | 22.1 | 24 | 31.2 |
| Sit in regular chair‡ | 9 | 11.7 | 19 | 24.7 |
| Get on toilet§ | 16 | 20.8 | 24 | 31.2 |
| Get out of bed∥ | 12 | 15.6 | 22 | 28.6 |
| Turn knobs¶ | 16 | 20.8 | 22 | 28.6 |
| Bend over to pick up | 31 | 40.3 | 29 | 37.7 |
| Need help for sitting | 28 | 36.4 | 24 | 31.2 |
| Use assistive devices for sitting | 29 | 37.7 | 27 | 35.1 |
| Participate in recreation | 39 | 50.6 | 35 | 45.5 |
| Get together with friend | 31 | 40.3 | 31 | 40.3 |
| Friends around | 23 | 29.9 | 23 | 29.9 |
| Participate in gym# | 16 | 20.8 | 29 | 37.7 |
| School in session | 34 | 44.2 | 26 | 33.8 |
⁎ P=.006 (2-sided χ2 test). |
† P=.014 (2-sided χ2 test). |
‡ P=.003 (2-sided χ2 test). |
§ P=.008 (2-sided χ2 test). |
∥ P=.003 (2-sided χ2 test). |
¶ P=.03 (2-sided χ2 test). |
# P=.000 (2-sided χ2 test). |
A child’s function was impaired when he/she experienced pain over the last week (table 4). Specifically, a report of “over the last week” at least some of the time was associated with the following: opening a jar (χ12 test=4.01, P=.045), standing while washing (χ12 test=7.83, P=.005), sitting in a regular chair (χ12 test=11.27, P=.001), getting on the toilet (χ12 test=6.82, P=.009), getting out of bed (χ12 test=6.10, P=.014), turning knobs (χ12 test=7.36, P=.007), participating in recreation (χ12 test=4.89, P=.027), and participating in physical education (χ12 test=15.74, P=.001). Again, reported pain was not associated with other PODCI items.
Table 4. Pain Over the Last Week by Limited Function
| Activities | Pain Last Week | |||
|---|---|---|---|---|
| No | Yes | |||
| n (n=30) | % | n (n=47) | % | |
| Lift heavy books | 25 | 32.5 | 41 | 53.2 |
| Pour half a gallon of milk | 25 | 32.5 | 43 | 55.8 |
| Open a jar⁎ | 18 | 23.4 | 38 | 49.4 |
| Use a fork and spoon | 6 | 7.8 | 23 | 29.9 |
| Comb hair | 13 | 16.9 | 24 | 31.2 |
| Button buttons | 19 | 24.7 | 39 | 50.6 |
| Put on coat | 13 | 16.9 | 29 | 37.7 |
| Write with a pencil | 17 | 22.1 | 29 | 37.7 |
| Run short distances | 22 | 28.6 | 39 | 50.6 |
| Bicycle | 19 | 24.7 | 38 | 49.4 |
| Climb 3 flights of stairs | 28 | 36.4 | 45 | 58.4 |
| Climb 1 flight of stairs | 19 | 24.7 | 33 | 42.9 |
| Walk more than a mile | 29 | 37.7 | 45 | 58.4 |
| Walk 3 blocks | 25 | 32.5 | 40 | 51.9 |
| Walk 1 block | 14 | 18.2 | 28 | 36.4 |
| Get on a bus | 25 | 32.5 | 40 | 51.9 |
| Need help | 28 | 36.4 | 43 | 55.8 |
| Use assistive devices | 23 | 29.9 | 44 | 57.1 |
| Stand while washing† | 10 | 13.0 | 31 | 40.3 |
| Sit in regular chair‡ | 4 | 5.2 | 24 | 31.2 |
| Get on toilet§ | 10 | 13.0 | 30 | 39.0 |
| Get out of bed∥ | 8 | 10.4 | 26 | 33.8 |
| Turn knobs¶ | 9 | 11.7 | 29 | 37.7 |
| Bend over to pick up | 20 | 26.0 | 40 | 51.9 |
| Need help for sitting | 20 | 26.0 | 32 | 41.6 |
| Use assistive devices for sitting | 20 | 26.0 | 36 | 46.8 |
| Participate in recreation# | 27 | 35.1 | 47 | 61.0 |
| Get together with friend | 21 | 27.3 | 41 | 53.2 |
| Friends around | 16 | 20.8 | 30 | 39.0 |
| Participate in gym⁎⁎ | 9 | 11.7 | 36 | 46.8 |
| School in session | 25 | 32.5 | 35 | 45.5 |
⁎ P=.045 (2-sided χ2 test). |
† P=.005 (2-sided χ2 test). |
‡ P=.001 (2-sided χ2 test). |
§ P=.009 (2-sided χ2 test). |
∥ P=.014 (2-sided χ2 test). |
¶ P=.007 (2-sided χ2 test). |
# P=.027 (2-sided χ2 test). |
⁎⁎ P=.000 (2-sided χ2 test). |
Where the child had limitations because of speech problems and the child did not receive speech therapy, the perception of pain was greater (figs 1A, B). Comfort (pain free) scores showed significant differences across “receive treatment for speech problems now” (F1,64=6.04, P=.001) and “activities limited by speech problems now” (F1,64=9.05, P=.001). The 2 factors did not interact (F1,64=1.41, P=.24). No differences were noted for the other comorbidities.

Fig 1.
(A) Comfort (pain free) scores across limitations due to speech. (B) Comfort (pain free) scores across speech therapy.
Binary logistic regression was used to identify which reported behaviors best predicted that pain interfered with physical activity. On the CBCL syndrome scales, social problems (odds ratio [OR]=1.18; 95% confidence interval [CI], 1.04–1.35) and attention problems (OR=.84; 95% CI, .72–.98) predicted pain that interfered with activity. On the BRIEF, of the subtests comprising the Metacognition Index, the initiate scale (OR=1.12; 95% CI, 1.03–1.22) predicted pain that interfered with activity. No behavioral regulation subtests predicted that pain interfered with physical activity.
Discussion
This study evaluated parents’ reports of pain interference in ambulatory children with CP and its impact on their child’s physical functioning and behavior. Pain was frequent (61% of parents reported weekly) in this group of children, despite care to exclude those with antalgic gait. The high number of respondents reporting that their children experienced pain is similar to the observation of Hadden and von Baeyer,5 in which 67% of children with CP reported with the month before rating. The frequency of reported pain is higher than in a survey of Dutch children1 in which 54% experienced pain in the previous 3 months and 25% had chronic pain.
Similar to other studies, there was a sex bias. Girls were reported to have more extreme pain.7, 42 This cannot be accounted for by other functional health outcomes such as upper-extremity function, transfers and mobility, and physical function and sports, nor was age a factor. Like other studies including children with developmental disabilities,8 this study reported that pain did not differ by age.
Pain is perceived to be greater when a child has speech problems and less when receiving speech therapy (see figs 1A, B). Parents are usually in tune with their child’s reactions to pain and can be an invaluable resource in assessing their child’s behavior.27 Parents of children with profound special needs base their assessments on a recognized deviation from their child’s usual individual activity, responsiveness, mood, and behavior patterns. They believe that health professionals may not recognize their child’s pain cues.43 It is important to take time so that a child is able to communicate his/her needs especially when that child has a speech disability.27
Although self-report is a criterion standard for assessing children’s pain,44 a large number of children with CP have been observed to be unable to provide self-report ratings.25 Houlihan et al7 note the potential advantages of assessing pain in children with CP who have normal cognition and communication skills. However, in this study, there was a high rate of developmental delay, learning problems, and speech problems that make pain assessment by self-report more difficult, if not impossible, and places an emphasis on parent ratings. This supports the need for observational measures, emphasizing the importance of a multidisciplinary approach in assessing a child’s pain. This approach should incorporate parental input to pain assessment and its management, especially when creating strategies to help children know how to interpret and communicate their pain. Strategies may include the use of communication aids and sign cards.27
Children with less pain have higher functional walking skills. Breau et al8 suggested that children who have more pain have more cognitive and physical impairments. Pain seemed to interfere with adaptive functioning; this is consistent with emerging findings.8 Problems with activities of daily living such as using utensils, washing, and toileting were associated with pain. Interestingly, children with CP who had pain had more difficulty getting out of bed. Houlihan7 noted that pain led to increased days in bed and limited participation in physical education and was associated with overall increased dependency.
Recent reports8 hypothesize that repeated pain might have an impact on a child’s behavior. In this study, more pain was predicted by social and attention problems. Children experiencing pain may become more sensitized to it over time. Pain may be used to excuse children from challenging social experiences. This may contribute to the challenge of differentially diagnosing functional from organic pain.28 It is possible that parents confuse a social distance from peers or inattentiveness with anxiety or pain. Fear and anxiety have been observed as confounding variables in healthy girls.7
Problems with metacognitive functioning appear to predict pain that interferes with activity. In one third of this study sample, pain was reported to interfere with daily functional activity. In addition, social problems and attention problems predicted pain that interfered with activity. Initiating action predicted pain that interfered with activity. This implies that the children need to be told to begin a task even when willing. They do not appear to be self-starters and do not take the initiative. Among other things, they have trouble organizing activities with friends.34, 35 This observation may have some important implications for treatment because pain is often a barrier to adherence to interventions such as home stretching exercises. If pain or the perception of pain is not addressed early, treatment may be compromised, with substantial consequences to functional prognosis and the quality of life of the child and their family.25, 45
There are a number of limitations to our study worth noting. This was a convenience sample, thus limiting the generality of the findings. The source of pain was not identified and may or may not have considerable bearing on function. Foot pain was cited as a source of pain in a few children, but a systematic audit of back, hip, knee, ankle, and foot pain was not performed and should be a focus of future studies. Further, pain from constipation may have been responsible for the pain associated with toileting. Because this was a cross-sectional study, the change in the pattern of pain over time was not recorded. A further limitation is that the pain reported was based on caregiver report and not direct observation. Other studies8, 46 have noted that parent or caregiver judgments of pain tend to be valid, although parents may underestimate their child’s pain.47 It should be noted, however, that behaviors observed by parents such as anxiety or social problems that may have been interpreted as pain were not evaluated in detail and may hold valuable clues to the interpretation of a child’s pain. In addition, the results are descriptive and correlational; no cause-and-effect relations between reports of pain and behavior patterns were established. Finally, the child’s report of pain was not studied, and there may have been differences between parent and self-report. As such, the results of our study may not be readily interpretable with respect to the adult CP studies in which self-report is, in whole or in part, relied on.
Conclusions
Our overall major findings suggest that pain, as reported by parents, in ambulatory children with CP is frequent and associated with behavioral, functional, and social consequences such as avoiding initiating tasks that are important for independence. Additionally, sex appears to be an important risk factor because girls were reported to experience more pain.
Supplier
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- a Version 13.0; SPSS Inc, 233 S Wacker Dr, 11th Fl, Chicago, IL 60606.
No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the author(s) or upon any organization with which the author(s) is/are associated.
PII: S0003-9993(06)00171-7
doi:10.1016/j.apmr.2006.02.023
© 2006 American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation. Published by Elsevier Inc. All rights reserved.
Volume 87, Issue 7 , Pages 928-934, July 2006
