Prevalence rates for pain in children with cerebral palsy (CP) have been reported as high as 83%, with nearly 50% affected by some form of pain all the time or some of the time each day.1–3 Families of children with CP identify bodily pain and pain associated with physical therapy as deterrents to high quality of life.4 Despite the growing awareness of pain in children, there is a paucity of physical therapist–led research concerning pain assessment and management during physical therapy interventions. Little is known about physical therapist practice patterns regarding this phenomenon. Foundational information about how pain is assessed and treated in this population is needed before best practice guidelines and research to support effective interventions can be defined.
Definition of Pain
The International Association for the Study of Pain defines pain as “an unpleasant sensory and emotional experience associated with actual and potential tissue damage.”5 The Guide to Physical Therapy Practice defines pain as “a disturbed sensation that causes suffering or distress.”6 (p12) Apparent from both definitions, pain is a subjective experience. As such it can be difficult to assess, particularly in young children and in children with cognitive and communicative limitations, and its perception can be altered by extraneous factors.
Pain Assessment Measures
Accurate pain assessment requires careful consideration of the child's age, cognitive and communicative abilities, emotional status, previous pain experiences, culture, ethnicity, and sensory motor abilities.7 Specific features for pain measurement tools requiring consideration include psychometric properties, intended population, availability, and ease of administration. Categories of pain-assessment measures available for use include self-report, physiological, and behavioral pain and distress measures. Self-report measures have been identified as the gold standard in pain assessment8 and numerous self-report measures exist. O'Rourke8 provides a summary of the individual measures and their psychometric properties. Yet, von Baeyer9 has identified limitations to their use in children because of the following: (1) requirement of sufficient cognitive and language development; (2) lack of understanding may lead children to construct an answer; (3) children younger than 5 years tend to treat scales as dichotomous rather than graded and choose only the extremes; and (4) children's reports of pain may be affected by their perception of the consequences of the rating.
Behavioral measures rely on the presence of a constellation of observable markers of pain in children including defined facial expressions, vocalizations, movements, tone changes, changes in affect, sleeping, and eating behaviors. These measures often require extensive observational analysis. The use of behavioral measures in children with neurologic impairment and atypical pain responses, such as laughing, seizures, and self-abusive behaviors, has been questioned.10 In addition, the reliability and validity of these measures as a means to assess pain by a physical therapist involved in the actual treatment of a child have not been established.
Alternatively, physiological measures, such as heart rate, vagal tone, blood pressure, oxygen saturation, palmar sweating, and neuroendocrine response, may be used to rate pain responses. Challenges associated with interpreting these measures in isolation include the following: (1) physiological responses to various types of stress are similar; (2) physiological responses to long-term pain appear to habituate; and (3) gestational age, medications, overall health, and environmental factors may influence responses. In addition, the majority of research suggests that physiological responses to pain in children with neurologic impairment may differ from those expressed by children who are developing typically.11
Factors That Influence the Perception and Experience of Pain
The perception and experience of pain can be influenced by age, developmental level, gender, and psychological, contextual, experiential, and social factors.12,13 Many of these influential agents are beyond the control of the physical therapist. However, the psychosocial context of the physical therapy environment, including the physical therapist's response to the child's pain behaviors, is amenable to change providing physical therapists are able to reliably assess the pain in children and are competent in the provision of effective pain management interventions.
Few studies have addressed the pain that occurs during rehabilitative intervention in the neurologically impaired pediatric population. Physical therapists' behaviors influenced the level of distress and coping ability in children with CP during sessions of painful stretching following selective dorsal rhizotomy.14 Therapists' behaviors accounted for 67% of the variance in child coping behaviors and 65% of the variance in child distress behaviors. Therapist behaviors that promoted coping and alleviated distress included commanding the child to engage in a coping strategy, such as counting to 10, using nonprocedural talk, or talk that distracted the child and was not about the actual intervention; checking the child's status; praise; and empathetic statements, such as “I know this is hard for you.” Behaviors that inhibited coping and promoted distress included the use of reassuring comments, such as “it's almost over,” and criticism. The authors concluded that providing training in these techniques to physical therapists should be a top priority, stating that “such training could contribute to a sense of mastery to staff, parents, and children in situations where they could otherwise feel helpless.”14 (p121)
A survey of occupational therapists performed in 1994 revealed that occupational therapists more commonly associated pain in children with conditions such as burns, arthritis, cancer, and AIDS than in children with neuromuscular disorders.15 Verbal report and facial expression were primarily used to determine the presence of pain. Pain management was seldom addressed during treatment sessions. The authors concluded that occupational therapists were poorly informed of pediatric pain assessment tools and subtle pain behaviors. The researchers recommended improvements in entry-level education to address therapists' preparation to assess and manage pain in children, advocating that an increased awareness of the effects of pain may improve the quality of service delivery and functional outcomes.
Subsequent to the survey in 1994, additional pediatric pain assessment measures have been developed. Research has documented the potential deleterious consequences of underrecognized and undertreated pediatric pain, such as withdrawal, depression, sleeping and eating disturbances, family stress, chronic pain syndromes, altered pain perception, attention-deficit disorders, feelings of helplessness and despair, and, ultimately, poor quality of life.16–19 The growing awareness of consequences of pain has culminated in a mandate from The Joint Commission in 2000 to make pain assessment and management a priority in its national standards and accreditation process.20 Despite such developments, there is little research available to guide pediatric physical and occupational therapists in pain assessment and management during therapeutic interventions for children with neurologic impairments.
The purpose of this survey was to explore and describe the pain assessment tools and intervention strategies used, by physical therapists in the treatment of children with neurologic impairment. Guiding questions included the following:
- What standardized tools are physical therapists using to assess pain in children with neurologic impairment?
- What behavioral indicators do physical therapists use to determine pain in nonverbal children?
- What types of interventions do physical therapists employ if pain is detected during a physical therapy session?
- Does work setting and years of pediatric experience influence physical therapy practice patterns regarding pain assessment and pain management?
The survey was developed on the basis of extensive literature review on pain assessment and management in children.7 Standardized pain assessment tools were classified into self-report, physiological, behavioral, and composite measures. A list of behaviors that may indicate pain in children was generated from a review of behavioral pain assessment measures such as the Non-communicating Children's Pain Checklist-Postoperative Version21 and the Pediatric Pain Profile.22 A list of nonpharmaceutical pain management techniques that may be used by physical therapists was developed on the basis of several Cochrane reviews of nonpharmaceutical pain management in children with a variety of diagnoses, 1 study on the effects of the psychosocial physical therapy environment on child coping, and reviews of pain and anxiety management in children undergoing medical procedures.14,23–28 Potentially damaging interventions, based on reviews of emerging research on pain in children, were also included.14,29 The survey was formatted on Survey Monkey. Participants consented to participate by completing the survey and the responses were anonymous.
The survey was pilot tested on 13 physical therapists (PTs), 6 on the internet and 7 on a hard copy form that permitted comments. Five of the PTs who responded to the hard copy form were American Board of Physical Therapy Specialties pediatric-certified specialists and had more than 15 years of pediatric experience. The remaining PTs had at least 5 years of pediatric experience. Revisions were made on the basis of verbal and written feedback and the final 32 question survey was approved for use by the institutional review board. See Appendix A (available online at http://links.lww.com/PPT/A12) for questions from the survey that are pertinent to this report. An invitation to participate along with a link to the survey was posted on the listserv of the Pediatric Section of the American Physical Therapy Association for 4 weeks. A reminder was posted after 2 weeks.
Selected data, including years of pediatric experience and work environment, were converted for analysis. Years of pediatric experience were condensed into 3 categories: 0 to 10, 11 to 20, and 21 and above. Home health, early intervention, and school settings were condensed into a category labeled natural environment due to the low number of responses in individual categories. Responses were assigned a numerical data code. All data were entered into SPSS 16. Descriptive statistics including frequencies and measures of central tendency were employed to assess demographic data and use of pain assessment tools and pain management interventions. The Cronbach alpha was calculated for the items reported in this study. Chi-square analysis, Cramer's V, and standardized residuals (SR) were used to assess the relationships between work environment and the use of pediatric pain assessment tools and interventions. The Spearman rho was used to assess correlations between years of pediatric experience and use of pain assessment tools and pain interventions.
One hundred seven PTs responded out of more than 800 PTs who participated in the listserv (response rate of approximately 13%). Of those, 102 completed the survey. The entry-level degree and the highest degree achieved for a majority of the respondents were a bachelor's degree (58%) and a master's degree (42%), respectively. Years of work experience closely matched a membership survey of the Pediatric Section of the American Physical Therapy Association in 2006. However, work environment varied considerably from the reported survey. The Cronbach alpha was 0.82 indicating acceptable internal consistency.
Pain Assessment Tools
More than 80% of the respondents reported using subjective measures to assess pain. Seventy percent reported using self-report measures such as Faces Pain Scale,30 Hester Poker Chip Scale,31 and Oucher Scale.32 Less than 45% reported using behavioral measures such as the Child Facial Coding System,33 Children's Hospital of Eastern Ontario Pain Scale,34 and Face, Leg, Activity, Cry, and Consolability Behavioral Pain Assessment Scale,35 and 40% reported using physiological measures (heart rate, oxygen saturation, and blood pressure). Five percent of the respondents who worked in a neonatal intensive care unit setting reported using composite measures such as the Premature Infant Pain Profile.36
Aside from standardized assessments, behavioral cues that were used most often included irritability, crying, vocalizations, and facial expressions. Less frequently used behavioral cues included decreased attention, requests to rest, withdrawal, refusals to participate, and changes in muscle tone. Few respondents used reports of changes in sleeping and eating patterns by caregivers to indicate pain (Table 1).
Pain Management Techniques
Distraction, procedural talk, and praise were used most often to manage pain that occurred during a physical therapy session. Rarely used interventions included transcutaneous electrical nerve stimulation (TENS), thermal agents, apologizing, and recommending pharmaceutical intervention (Table 2). Management techniques that were suggested in response to open-ended questions included referrals to child life services and psychology, “using a fun warm-up activity prior to stretching,” and “trying the intervention in another way.” See Appendix B (available online at http://links.lww.com/PPT/A13) for additional responses to open-ended questions
Work environment was significantly correlated with the use of self-report measures (χ2 = 18.13, P = .003, Cramer's V = .42, P = .003) and behavioral pain assessment tools (χ2 = 18.06, P = .003, Cramer's V = .42, P = .003). Analysis of SR revealed residuals greater than 2 in the following boxes: Natural environment and “No” in response to use of self-report measures (SR = 2.5), hospital and “Yes” in response to use of behavioral tools (SR = 2.1), and natural environment and “Yes” in response to use of behavioral tools (SR = −2.2). Respondents who worked in school, home health, and early intervention settings were less likely to use standardized self-report and behavioral measures than those who worked in hospital environments. Therapists with greater experience were more likely to utilize reports of changes in eating behaviors (r = 0.41, P ≤ .005) and sleeping behaviors (r = 0.32, P = .002) as possible indicators of pain in children than less experienced therapists, indicating a fair degree of relationship.
The physical therapists in this study reported greater use of standardized pain assessment tools, particularly self-report measures, for children than the occupational therapists in Turnquist and Engel's15 survey more than 10 years ago. Only 41% used physiological and behavioral tools. Given that self-report measures are difficult and unreliable in children with limited cognition and communication skills, it appears that physical therapists are relying on subjective observations to assess pain in this population despite the availability of standardized behavioral assessments. Lack of awareness and availability of behavioral tools could explain this phenomenon. An alternative explanation is that the current behavioral tools are not conducive for use during real-time physical therapy sessions.
Overt measures, such as facial expression, crying, and vocalizations, were used more frequently to assess pain than subtle indicators such as decreased attention, withdrawal, and changes in sleeping and eating patterns. While overt measures may be appropriate for many children, research suggests that some children with neurologic impairment do not express pain in ways that are overt and “typical” and caregivers identify potentially contradictory behaviors as indicators of pain.37,38 For example, children with decreased muscle tone and energy reserves may not have sufficient resources to cry, utilize facial muscles to express pain, or vocalize, while those with severe cognitive impairments may laugh in response to pain. Therapists may not be aware of pain expressions used by children who are nonverbal, motorically or cognitively impaired, and their views on behavioral pain expressions may vary considerably from the children's caregivers.
Physical therapists used research-supported nonpharmaceutical measures to address pain that occurred during a physical therapy session such as distraction, relaxation, praise, reward, and calming techniques. Answers to open-ended questions revealed that some therapists were appropriately incorporating the assistance of caregivers to provide distraction during painful procedures and were encouraging the children to use self-coping strategies. However, potentially harmful distress-promoting interventions such as procedural talk, apologizing for the intervention, pain contingent rest, and reassurance were used as well. Studies of adults with CP reveal that pain contingent rest can be associated with poor coping mechanisms and depressive symptoms.31,39
The responses to the open-ended questions revealed that some physical therapists do not feel that pain is present during physical therapy interventions. This finding is in contrast to reports by individuals with CP and their caregivers. Kibele40 reported that one of the most salient negative memories of childhood in adults with CP was the pain related to physical therapy interventions of stretching and bracing. Hadden and von Baeyer's41 survey of parents revealed that the activity most frequently identified as painful and greatest in pain intensity for children with CP was assisted stretching. Other reported painful activities included independent standing, assisted walking, assisted sitting, and donning splints, all activities that typically occur during a physical therapy session. McKearnan42 confirmed these findings, reporting that 58% of 95 youths with developmental disabilities reported pain during physical or occupational therapy.
The considerably low response rate may be attributable to the timing of the survey, the topic, and the survey's length. The survey was posted during the summer months when potential respondents may have been vacationing. The topic, pediatric pain, may have not been of interest to a majority of physical therapists who participate in the listserv. Responses to the open-ended questions support that not all therapists are aware of pain during pediatric rehabilitation procedures. The survey's length may have been prohibitive.
Although modifications to the survey items were made in response to feedback received from the pilot study, item clarity could have been improved. Neurologic Impairment was not defined. The respondents were not asked to consider a specific diagnosis, age, or developmental ability. The definition of pain was intentionally left to the individual respondents but perhaps should have been defined.
Standardized behavioral measures of pain were not widely used by pediatric physical therapists. Research to determine the utility of these measures during real-time physical therapy interventions and the awareness of these measures by larger groups of pediatric therapists is indicated.
The manner in which physical therapists form their opinions regarding behavior of children during physical therapy sessions and how to manage that behavior is also of interest. It appears that work environment and years of experience influence the assessment tools and items that are used to determine pain. How consistent is this relationship for larger numbers of physical therapists? What other covariates influence a therapist's perception and responses to pain in children, such as personal pain coping style, personal experience with pain, personal experience with children in pain, etc?
Additional research is indicated to explore the contrast between physical therapists' perceptions and those of the children receiving intervention. How do therapists, caregivers, and children's perception of behavior during potentially painful physical therapy interventions compare? Recommendations for future studies include the use of video photography of physical therapy interventions performed on children to standardize patient cases for qualitative discussions and comparisons among these 3 groups.
Whereas physical therapists who participated in this survey were using research-supported interventions to assist children in coping with pain, inappropriate and potentially harmful interventions were used as well. Research to determine effective continuing education methods to bridge this gap is indicated.
This work was completed by Ms Swiggum in partial fulfillment of the requirements for the PhD degree in the School of Physical Therapy.
1. Tervo RC, Symons F, Stout J, Novacheck T. Parental report of pain and associated limitations in ambulatory children with cerebral palsy. Arch Phys Med Rehabil. 2006; 87:928–934.
2. Schwartz L, Engel JM, Jensen MP. Pain in persons with cerebral palsy. Arch Phys Med Rehabil. 1999; 80:1243–1246.
3. Houlihan C, O’Donnell M, Conaway M, Stevenson RD. Bodily pain and health-related quality of life in children with cerebral palsy. Dev Med Child Neurol. 2004; 46:305–310.
4. Waters E, Maher E, Salmon L. et al. Development of a condition-specific measure of quality of life for children with cerebral palsy: empirical thematic data reported by parents and children. Child Care, Health Dev. 2005; 31(2):127–135.
5. Merskey HB, Bogduk N, eds. The International Association for the Study of Pain (Task Force on Taxonomy). Classification of Chronic Pain: Descriptions of Chronic Pain Syndromes and Definition of Pain Terms. 2nd ed. Seattle, WA: IASP Press; 1994.
5. Guide to Physical Therapist Practice. 2nd ed. Phys Ther. 2001; 81:9–744.
7. Swiggum M, Hamilton M, Gleeson P, Roddey T. Pain in children with cerebral palsy: implications for pediatric physical therapy. Ped Phys Ther. 2010; 22(1):86–92.
8. O’Rourke D. The measurement of pain in infants, children, and adolescents: from policy to practice. Phys Ther. 2004; 84(6):560–570.
9. Von Baeyer CL. Children's self-reports of pain intensity: scale selection, limitations, and interpretation. Pain Res Manag. 2006; 11(3):157–162.
10. Solodiuk J, Curley MA. Pain assessment in nonverbal children with severe cognitive impairments: the Individualized Numeric Rating Scale (INRS). J Pediatr Nurs. 2003; 18(4):295–299.
11. Breau LM, McGrath PJ, Zambalia M. Assessing pediatric pain and developmental disabilities. In: Oberlander TF, Symons FJ, eds. Pain in Children and Adults With Developmental Disabilities. Baltimore, MD: Paul Brookes Publishing; 2006:149–172.
12. Gaffney A, Dunne EA. Developmental aspects of children's definition of pain. Pain. 1986; 26:105–117.
13. Barowsky EI. Factors affecting the impact of pain and painful experiences on the exceptional child. J Special Ed. 1987; 21:110–121.
14. Miller AC, Johann-Murphy M, Zhelezniak V. Impact of the therapist-child dyad on children's pain and coping during medical procedures. Dev Med Child Neurol. 2001; 43:118–123.
15. Turnquist KM, Engel JM. Occupational therapists’ experiences and knowledge of pain in children. Phys Occup Ther Ped. 1994; 14(1):35–51.
16. Anand KJS, Phil D, Hickey PR. Pain and its effects in the human neonate and fetus. N Engl J Med. 1987; 317(21):1321–1329.
17. Castle K, Imms C, Howie L. Being in pain: a phenomenological study of young people with cerebral palsy. Dev Med Child Neurol. 2007; 49(6):445–450.
18. Hunfeld JAM, Perquin CW, Duivenvorrden HJ, et al. Chronic pain and its impact of quality of life in adolescents and their families. J Pediatr Psychol. 2001; 26:145–153.
19. Sharpe D, Rossiter L. Siblings of children with chronic illness: a meta-analysis. J Pediatr Psychol. 2002; 27:699–710.
21. Breau LM, Finley GA, McGrath PL, Camfield CS. Validation of the Non-communicating Children's Pain Checklist-Postoperative Version. Anesthesiology. 2002; 96:528–535.
22. Hunt A, Goldman A, Seers K, Crichton N. Clinical validation of the Paediatric Pain Profile. Dev Med Child Neurol. 2004; 46(1):9–18.
23. Eccleston C, Yorke L, Morley S, Williams ACdeC, Mastroyannopoulow K. Psychological therapies for the management of chronic and recurrent pain in children and adolescents. Cochrane Database Syst Rev. 2008; 2:CD003968.
24. Huertas-Ceballos A, Logan S, Bennett C, Macarthur C. Psychosocial interventions for recurrent abdominal pain (RAP) and irritable bower syndrome (IBS) in childhood. Cochrane Database Syst Rev. 2008; 2:CD003968.
25. Uman LS, Chambers CT, McGrath PJ, Kisely S. Psychological interventions for needle-related procedural pain and distress in children and adolescents. Cochrane Database Syst Rev. 2008; 3:CD005179.
26. Walco GA, Varni JW, Ilowite NT. Cognitive-behavioral pain management in children with juvenile rheumatoid arthritis. Pediatrics. 1992; 89:1075–1079.
27. Anie KA, Green J. Psychological therapies for sickle cell disease and pain. Cochrane Database Syst Rev. 2008; 2:CD001916–29; 1–29.
28. Kleiber C, Craft-Rosenberg M, Harper DC. Parents as distraction coaches during IV insertion: a randomized study. J Pain Symp Manag. 2001; 22(4):851–861.
29. Manimala MR, Blount RL. The effects of parental reassurance versus distraction on child distress and coping during immunizations. Child Health Care. 2000; 29(3):161–177.
30. Hicks CL, von Baeyer CL, Spafford PA, et al. The Faces Pain Scale–Revised: toward a common metric in pediatric pain measurement. Pain. 2001; 93:173–183.
31. Hester NO. The preoperational child's reaction to immunization. Nurs Res. 1979; 28:250–255.
32. Beyer JE, Denyes MJ, Villarruel AM. The creation, validation, and continuing development of the Oucher: a measure of pain intensity in children. J Pediatr Nurs. 1992; 7:335–346.
33. Gilbert GA, Lilley CM, Craig KD. Postoperative pain expression in preschool children: validation of the child facial coding system. Clin J Pain. 1999; 15:192–200.
34. Suraseranivongse S, Santawat U, Kraiprasit K, et al. Cross-validation of a composite pain scale for preschool children within 24 hours of surgery. Br J Anaesth. 2001; 87:400–405.
35. Merkel S, Voepel-Lewis T, Malviya S. Pain assessment in infants and young children: the FLACC scale. Am J Nurs. 2002; 102:55–58.
36. Stevens B, Johnston C, Petryshen P, Taddio A. Premature Infant Pain Profile: development and initial validation. Clin J Pain. 1996; 12:13–22.
37. Foley DC, McCutcheon H. Detecting pain in people with an intellectual disability. Acc Emerg Nurs. 2004; 4:196–200.
38. Mercer K, Glenn S. The expression of pain in infants with developmental delays. Child Care Health Dev. 2004; 30:353–360.
39. Engel JM, Schwartz L, Jensen MP, Johnson DR. Pain in cerebral palsy: the relation of coping strategies to adjustment. Pain. 2000; 88(3):225–230.
40. Kibele A. Occupational therapy's role in improving the quality of life for persons with cerebral palsy. Am J Occup Ther. 1989; 43:371–377.
41. Hadden KL, von Baeyer CL. Pain in children with cerebral palsy: common triggers and expressive behaviors. Pain. 2002; 99:281–288.
42. McKearnan KA. Chronic Pain in Youths with Physical Disabilities [dissertation]. Washington: University of Washington; 2004.