Chronic Pain in Young People With Cerebral Palsy: Activity Limitations and Coping Strategies : Pediatric Physical Therapy

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RESEARCH REPORTS

Chronic Pain in Young People With Cerebral Palsy: Activity Limitations and Coping Strategies

Carozza, Letisha BPhysio(Hons); Anderson-Mackay, Ella BPhysio(Hons); Blackmore, A. Marie PhD; Kirkman, Helen Alison BSc(Physio), Dip NDT, GCUT, GDHPE; Ou, Jin BSc(Physio)(Hons), GradDipPaedNeurRehab, MBA; Smith, Nadine BSc(Physio) MPhysio(PaedPhysio); Love, Sarah PhD

Author Information
doi: 10.1097/PEP.0000000000000943

Abstract

Cerebral palsy (CP) is the most prevalent physical disability in children, occurring in 1.4 per 1000 births.1 It is a heterogenous neurological disorder that results in impairments of movement, muscle tone, and posture, as well as multiple comorbidities including pain.2 Pain is defined as “an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.”3(p1976) In CP, pain is commonly caused by scoliosis, abnormal muscle tone, gastrointestinal dysfunction, and hip subluxation.4

Chronic pain is defined as persistent or recurrent pain lasting longer than 3 months or the expected time to heal.5 One in 3 children with CP experiences chronic pain.6 Chronic pain impacts all of the “F” words of childhood disability including friendships, family, fitness, fun, and function.7 It is associated with reduced quality of life,6 reduced participation,6 and increased mental health disorders such as anxiety and depression.8 Fauconnier et al9 found that, after adjusting for severity of impairment, pain was strongly associated with lower participation in activities in 8- to 12-year-old children with CP.

The effect of pain on daily activities is likely to be mediated by the coping strategies that individuals use to manage their pain experiences. Adults with CP have been reported to use more catastrophizing coping strategies than non-CP chronic pain populations, and catastrophizing is strongly correlated with both increased pain interference (the effect of pain on functioning) and depressive symptoms.10 On the other hand, managing coping strategies in adults with CP may improve the effect of pain on daily functioning.11

Only 1 study12 has investigated the coping strategies for pain used by children with CP, comparing them with those of a cohort of typically developing children. This cross-sectional study of 5- to 18-year-old children with CP, using the Pediatric Pain Coping Inventory—French (PPCI-F), reported that children with CP used fewer coping strategies than children who are typically developing and used the more effective strategies of Cognitive Self-Instruction, Distraction and Problem-Solving less often.13

The aims of the present study were to describe the effect of chronic pain on the activities of children and adolescents with CP and the coping strategies that they use and to examine the associations between effect of pain on activities, coping strategies, and level of pain.

METHODS

Study Design

This was a cross-sectional online survey.

Participants

Participants were recruited through Ability WA, a disability service provider in Western Australia, via social media posts, emails, postal mail, posters, and therapists drawing the study to the attention of families of children who had reported pain. Inclusion criteria were: any type of CP, aged 8 to 18 years, and self- or carer-reported chronic pain (defined as ongoing pain for at least 3 months, not from recent surgery or injury).

Instrument

Three versions of the survey were used: a self-report child version (ages 8-12 years), a self-report teen version (ages 13-18 years), and a carer-report version (see Supplemental Digital Content 1, available at: https://links.lww.com/PPT/A401). The online survey included (a) a question to determine whether the respondent was a carer or child/adolescent; (b) a question to determine whether the child/adolescent met the inclusion criterion of chronic pain; (c) 3 questions about the distribution and intensity of the pain; (d) the Child Activity Limitations Interview—21 (CALI-21)14; (e) 2 open-ended questions, 1 probing for activities not listed in the CALI-21, and 1 asking what activity they most like to do that is limited or prevented by pain; (f) the Pediatric Pain Coping Inventory (PPCI)15; (g) a general open-ended question asking for anything further about the chronic pain; and (h) demographic questions (age, sex, walking status, predominant motor impairment, and distribution of predominant motor impairment).

The CALI-21 asks respondents to report “how difficult or bothersome” it has been to do each of 21 activities during the previous 4 weeks on a 5-point scale from 0 (not very difficult) to 4 (extremely difficult). A “not applicable” option was added in the study to accommodate respondents who were not walking. The CALI-21 has good internal consistency, high cross-informant reliability, and construct validity.14

The PPCI15 asks respondents how often (“not at all,” “sometimes,” or “a lot”) they use each of 41 strategies used to manage pain. It has 5 subscales: Cognitive Self-Instruction (7 items), Problem-Solving (10 items), Distraction (9 items), Seeks Social Support (9 items), and Catastrophizing/Helplessness (6 items). The PPCI has good internal consistency and is conceptually valid.15 It has been used in adults with CP and in children with other conditions such as arthritis.15

Procedure

Participants were provided with links to the 3 versions of the survey in Survey Monkey. The survey could be completed by the child or the adolescent under parent supervision or by the parent or carer on their behalf. Respondents selected the version appropriate to themselves, depending upon the child's level of independence. Consent was obtained via a consent disclaimer at the beginning of the survey. The survey was anonymous. Data collection occurred from February 12, 2020, to April 20, 2020. The research protocol was approved by the Human Research Ethics Committee of the University of Notre Dame, Australia (approval number: 019168F).

DATA ANALYSIS

The data were exported into Excel and checked for completeness. Respondents who did not complete either the CALI-21 or the PPCI were excluded from the analysis of the scale they missed. Those who failed to complete both scales were excluded from the study. Where respondents marked “not applicable” on the CALI-21, their responses were treated as “missing” and analyses are reported for the remaining respondents (with valid number provided). Respondents who completed the CALI-21 and/or PPCI but not the demographic questions (which were at the end of the questionnaire) were included in the analysis (n = 3). Descriptive statistics (means, standard deviations, frequencies, and percentages) were calculated. As each subscale has a different number of items, mean scores were calculated as a percentage of the highest possible score for each PPCI subscale to create a “relative percentage” to allow comparison between subscales. Coping strategy maps were produced for each participant, and participants were subsequently grouped according to their predominant coping strategy type. Independent samples t tests were used to compare participants reporting high and low pain intensity on the CALI-21 and the PPCI. Two of the authors worked together to categorize the open-ended responses and report the number of responses in each category. The categories were derived from the data, not identified in advance. When these 2 authors had categorized the quotations, the categories were submitted to the other 5 authors for review. Representative quotations were selected and reported to illustrate these categories.

RESULTS

Participant Characteristics

Of 33 returned surveys, 6 were excluded, 1 because the child (a 5-year-old) did not meet the inclusion criterion for age, and 5 because neither the CALI-21 nor the PPCI was completed. This left 27 participants, of whom most had spastic CP (67%), most could walk (70%), and a third (37%) had hemiplegia (Table 1).

TABLE 1 - Participant Characteristics
Characteristic Participants (n = 27)
Age, M (SD), range, y 13.7 (3.09), 9-18
Gender, n (%)
Female 16 (59)
Male 8 (30)
No response 3 (11)
Report type, n (%)
Parent report 12 (44)
Child report 15 (56)
Predominant motor impairment, n (%)
Spastic 18 (67)
Dyskinetic (dystonia and/or choreoathetosis) 1 (4)
Ataxic 2 (7)
Not sure or incomplete data 6 (22)
Distribution of motor impairment, n (%)
Hemiplegia 10 (37)
Diplegia 6 (22)
Quadriplegia 5 (19)
Not sure or incomplete data 6 (22)
Ambulation, n (%)
Ambulant (with or without assistance) 19 (70)
Nonambulant 5 (19)
No response 3 (11)

Pain Location and Severity

There were no missing data for these questions. The results are summarized in Figure 1. Most participants (89%) reported pain in multiple body locations (M = 3.4; range: 1-8), the most common being the feet (63%), calves (44%), knees (41%), back (37%), thighs (33%), and hips (30%). The locations of worst pain were the feet (22%), knees (19%), back (19%), calves (15%), thighs (11%), hips (7%), chest (4%), and neck (4%). The pain intensity in the location of worst pain ranged from 3 to 10 (M = 6.1, SD = 2.1), with 3 participants reporting pain scores of 10/10 in the back or the calves.

F1
Fig. 1.:
Percentage of participants with “pain” and “worst pain” in each body area.

Association Between Pain and Activities

Table 2 shows “how difficult or bothersome” it was for participants to do activities “because of [their] pain,” as measured by the CALI-21. Items are arranged from most difficult to least difficult, based on their mean (shown in the final column). The most difficult activities tended to be the most vigorous activities (running, sport, walking upstairs, gym). Sleep was halfway down the list and rated as very or extremely difficult by 16% participants.

TABLE 2 - Child Activity Limitations Interview 21 (CALI-21) Item Resultsa
Activity Not Very Difficult + A Little Difficult Somewhat Difficult Very Difficult + Extremely Difficult Mean (SD)b
Running (n = 20) 20% 35% 45% 2.70 (1.23)
Sports (n = 24) 17% 33% 50% 2.50 (1.08)
Walking up stairs (n = 22) 36% 23% 41% 2.23 (1.44)
Gym (n = 18) 17% 44% 39% 2.22 (0.92)
Walking 1 or 2 blocks (n = 20) 35% 20% 45% 2.20 (1.60)
Riding a bike or a scooter (n = 15) 40% 13% 47% 2.07 (1.57)
Working at a job (n = 10) 30% 30% 40% 2.00 (1.48)
Doing a hobby (n = 24) 33% 46% 21% 1.92 (1.08)
Going to clubs/church activities (n = 16) 31% 44% 25% 1.89 (1.22)
Doing things with friends (n = 19) 42% 37% 21% 1.74 (1.29)
Sleep (n = 25) 40% 44% 16% 1.56 (1.30)
Being up all day without a nap or rest (n = 23) 48% 26% 26% 1.61 (1.47)
Housework or chores (n = 18) 44% 38% 17% 1.61 (1.21)
After school practices (n = 16) 43% 38% 19% 1.56 (1.17)
Playing with friends (n = 20) 55% 25% 20% 1.55 (1.32)
Going to school (n = 23) 70% 17% 13% 1.22 (1.06)
Riding in the school bus or car (n = 23) 65% 22% 13% 1.17 (1.13)
Schoolwork (n = 21) 67% 29% 4% 1.10 (0.87)
Watching TV (n = 21) 81% 14% 5% 0.76 (1.02)
Reading (n = 21) 81% 14% 5% 0.52 (0.91)
Eating regular meals (n = 23) 87% 13% 0% 0.35 (0.70)
aDark gray shading indicates high frequency (50%-100%), light gray shading indicates moderate frequency (25%-49%), and white shading indicates low frequency (0%-24%).
bPossible range was 0 to 4. Response options: 0 (not very difficult) to 4 (extremely difficult).

Total CALI-21 scores were calculated for the 15 participants who had fewer than 5 missing responses, following Palermo et al.14Figure 2 and Supplemental Digital Content 2, available at: https://links.lww.com/PPT/A402, show that participants with high pain intensity (greater than 5/10) had a significantly higher mean CALI-21 score than those with low pain intensity (5/10 and less), indicating that more intense pain is associated with more activity limitations. No significant difference was found between older and younger participants (P = .186; mean difference = −13.7, 95% confidence interval [95% CI]: 34.43-7.62).

F2
Fig. 2.:
Comparisons between groups with high and low pain intensity. Error bars show standard error of the mean. P values show differences between high and low pain intensity groups.

Twelve participants answered the open-ended question regarding what other activities pain makes difficult or bothersome. Answers were classified as follows: sport or exercise such as “strenuous exercise,” “jumping, swimming, climbing,” and kicking a soccer ball (n = 4), “sitting for long periods” (n = 3), movements involving the body part susceptible to pain (shoulders or feet) (n = 3), “physiotherapy” or “intensive rehabilitation” (n = 2), “communication” (n = 1), completing household chores such as “putting sheets on the bed, hanging washing on a hills hoist, cleaning a bathroom, reaching things above head,” and “heat” (exacerbating foot pain) (n = 1).

Participants were asked what activity they would most like to do that was limited or prevented by pain. There were 18 responses to this question, classified as follows: sport or exercise such as “walking on the beach,” “running,” “playing touch football,” “handball,” “riding a bicycle” (n = 10), activities with friends, such as “running and playing freely with his brother and friends” (n = 3), “stretching/physio” or “breathing exercises ... where I can focus on relaxing my head, neck and shoulders” (n = 2), communication “using the eye-gaze computer” (n = 1), “daily living” (n =1), “standing up” (n = 1), and reading (n = 1). One participant reported “I don't let it stop me. I get upset, emotional and cranky, but I do my activities anyway.”

Strategies for Coping With Pain

Table 3 shows the results for each subscale on the PPCI. Responses to individual items are shown in Supplemental Digital Content 3, available at: https://links.lww.com/PPT/A403. Every subscale or category of coping strategies was used at least sometimes by the majority of participants in this study. Participants' relative percentages for subscales of the PPCI were individually mapped and participants were grouped according to their predominant coping strategy type as follows: “users of positive/adaptive coping strategies” (Cognitive Self-Instruction and/or Problem-Solving) (35%), “users of Catastrophizing/Helplessness strategies” (27%), “users of mixed coping strategies” (19%), “users of Distraction” (12%), and “users of all strategies at a low level” (8%). Figure 3 graphs how the responses of participants in the present study compare with those in previous studies.

F3
Fig. 3.:
Means and 95% confidence intervals comparing present study (Pediatric Pain Coping Inventory [PPCI]) with those of Chaleat-Valayer et al13 and Spicher12 (Pediatric Pain Coping Inventory—French [PPCI-F]).
TABLE 3 - Pediatric Pain Coping Inventory Subscale Scores (n = 26)
PPCI Subscale Mean SD Observed Range of Scores Available Range of Scores Relative Percentagea
Cognitive Self-Instruction 5.62 3.93 0-13 0-14 40
Problem-Solving 8.62 3.50 3-16 0-20 43
Distraction 6.92 3.67 1-13 0-18 38
Seeks Social Support 6.92 3.52 2-15 0-18 38
Catastrophizing/Helplessness 5.96 3.26 0-12 0-12 50
Abbreviation: PPCI, Pediatric Pain Coping Inventory.
aRelative percentage refers to the subscale mean represented as a percentage of the highest possible score for that subscale to permit comparisons between subscales.

Catastrophizing/Helplessness was used significantly more by those with high pain intensity than those with low pain intensity (Figure 2; see Supplemental Digital Content 2, available at: https://links.lww.com/PPT/A402) and was significantly and strongly correlated with CALI-21 adjusted total scores (r[14] = 0.82, P value less than .001). None of the other PPCI subscales were significantly associated with pain intensity or activity limitations.

DISCUSSION

This study highlights the major effect of chronic pain in the lives of some children and adolescents with CP. Chronic pain was nearly always widespread (in multiple locations) and the worst pain sometimes was severely intense, with 3 participants reporting that it reached a level of 10/10 on the pain scale. This has implications for all aspects of daily living, quality of life, and health status.6,16

Participation is a fundamental indicator of human health and well-being.17 The young people in the present study reported that their pain prevented them from participating in many of their favorite activities. Previous studies have reported that children with CP commonly report pain in the lower limbs,6,16 and that pain limits their ability to participate in activities.9 In the present study also, most participants experienced chronic pain in their lower limbs, and activities involving mobility were most limited by this pain, such as running, sports, walking upstairs, gym, and walking 1 or 2 blocks. The activity limitations reported in this present study were due not to the gross motor impairment but specifically to the pain, as the wording of the CALI-21 denotes.

Through open-ended questions, the participants indicated the pain-limited activities that these children and adolescents would most like to have been able to do. These activities were common everyday activities of childhood and adolescence: walking, running, playing with friends, and sports. Almost half of the children found walking, running, and sports to be very difficult or extremely difficult because of pain, and 1 in 5 children found playing with friends to be very difficult or extremely difficult because of pain.

Previous studies have reported sleep as being one activity that is greatly affected by pain.6,18,19 Participants in the present study rated sleep as less limited by pain than vigorous activities. This may be a reflection of the data collection instrument used and/or the fact that most participants in this study could walk and therefore prioritized vigorous activities more than children who could not walk would have done.

Other pain-limited activities captured by the open-ended questions but not by the CALI-21 were communication, prolonged sitting, and physical therapy rehabilitation sessions. One parent highlighted the effect of pain on communication for their child, who did not walk. Pain limited the child's ability to use the eye-gaze computer in order to communicate, which was the activity most important to that particular child. The effect of chronic pain on this child's ability to communicate is likely to reduce her participation.

Coping strategies can mediate between the pain experience and its effect on activities. Cognitions, beliefs, and actions contribute to the brain's scrutiny of environmental, tissue, and spinal inputs.20 Individuals who use more adaptive coping strategies to manage their pain might be expected to be less limited by pain in everyday activities than individuals who use maladaptive strategies.

The responses to the PPCI from participants in the present study are comparable with those from the participants with CP assessed by Chaleat-Valayer et al,13 except that those in the present study showed a stronger tendency to Seek Social Support (Figure 3). In the present study, most participants used all types of coping strategies at least part of the time, suggesting that these children are capable of learning to use adaptive or maladaptive coping strategies. Different coping strategies predominated for different individuals: 1 in 3 favored Cognitive Self-Instruction and Problem-Solving, whereas 1 in 4 tended to use Catastrophizing/Helplessness most often. Others used a mixture of different strategies.

Overall, Catastrophizing/Helplessness was the most frequently used subscale, with a relative percentage of 50% on the PPCI. This is consistent with previous findings in young people with conditions other than CP.21,22 Previous studies in adults with CP have identified strong associations between catastrophizing and higher pain interference,10 depression,10,11,23 and poorer psychological functioning.10,11,23 In the present study, the use of Catastrophizing/Helplessness was associated with significantly higher pain intensity and significantly greater activity limitations.

This tendency to cope with pain using maladaptive strategies is concerning, because young people with CP are approximately twice as likely to have mental health symptoms as young people with no CP: 28% (according to the Strengths and Difficulties Questionnaire) or 35% (according to the Child Behavior Checklist) versus 14% in children with no CP.24 Evidence suggests that catastrophizing cognitions and feelings of helplessness toward pain may drive a sense of threat and thus chronic pain.20 In young people with non-CP conditions, these cognitions are associated with a greater display of pain behavior,25 more emotional distress,21 and less coping effectiveness,21 suggesting the likely benefit of considering interventions to reduce these and other maladaptive strategies and to encourage more adaptive coping strategies.

The present study is limited by its small sample size and the fact that most participants could walk with or with no assistance. For children who could not walk, and particularly nonverbal children with CP, pain is likely to be more common, less easily identified, and manifest itself in different ways. In an attempt to include young people with cognitive or communication impairment, both self-report and parent proxy report were used in this study. However, it must be noted that some discordance exists in children's and carers' responses for the PPCI.15 It is recommended that future studies investigate the validity of measures for assessing pain-limited activities and pain-coping strategies in children with CP.

It is estimated that 1 in 3 young people with CP experiences chronic pain.6 These young people's quality of life and participation in daily activities are profoundly affected by pain levels, which are sometimes extremely severe. These children's pain excludes them from many of the normal activities of childhood and adolescence, such as walking, running, sports, and playing with friends. The higher the pain intensity, the greater the activity limitation. Most young people with chronic pain report using every type of coping strategy at some time or other. Helplessness and catastrophizing are maladaptive strategies commonly used by young people with pain; in the present study, they were associated with more intense pain and greater activity limitations.

The results of this study carry important practical implications for physical therapists. Pain (not just motor impairment) should be considered as a possible reason for lack of participation in physical activities. Routine assessment of pain in children and adolescents with CP may reveal previously unrecognized pain, as pain is known to be underreported and undertreated in this population.26 A recent consensus statement on assessment of pain in children and young people with CP recommends that the following domains should be assessed: the location, frequency, intensity, and duration of the pain; factors that make the pain better or worse; effect of the pain on well-being and participation; how the pain is expressed and communicated; and the effects of the pain on quality of life, mobility, positioning, and sleep.27 The heterogeneity of presentation of pain in children and young people with CP means that no one size will ever fit all. The Holland Bloorview chronic pain assessment toolbox28 provides a range of evidence-based resources for physical therapists. Results from the present study suggest that it would be useful to assess pain-coping strategies as part of any comprehensive assessment of chronic pain in children with CP and, where appropriate, discuss clinical psychology services as a way of adding to the child's and family's repertoire of strategies for coping with chronic pain. Pain in CP is likely to increase with age, and so early assessment and management pathways have the potential for lifelong benefits. Physical therapists can play a key role in identifying chronic pain and advocating for the children and young people who experience it.

ACKNOWLEDGMENTS

The authors gratefully acknowledge the participation of the children and the carers who completed the surveys for this study and the support of staff at the Ability Centre (now Ability WA) during data collection. The authors thank Charlize Ravai for the graphics design of Figure 1.

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Keywords:

catastrophization; cerebral palsy; chronic pain; coping; participation

Supplemental Digital Content

© 2022 Academy of Pediatric Physical Therapy of the American Physical Therapy Association