Lynn M. Breau

Background  Pain interferes with the functioning of typical children, but no study has examined its effect on children with pre‐existing intellectual disabilities (ID).Methods  Caregivers of 63 children observed their children for 2‐h periods and recorded in 1‐week diaries: pain presence, cause, intensity and duration. Caregivers also recorded the children’s performance of pre‐existing skills during each period. Proportion of skills displayed when pain was present and absent was compared. Fifty caregivers completed a second set of observations when pain was present and absent.Results  Comparison of the first set of observations indicated children displayed significantly more abilities (64%) when pain‐free (Pain‐Free Day 1), than when pain was present (54%; Pain Day 1). Children displayed 64% of their possible abilities during Pain‐Free Day 2, but only 53% during Pain Day 2. Pain impacted all areas of function (communication, daily living, social and motor skills). Children’s physical and demographic characteristics did not moderate the impact of pain on function, but functioning of children with more severe ID was most impacted by pain.Conclusions  Children perform fewer adaptive skills when pain is present. This could affect long‐term functioning as well, through reduced practice of skills.

Background: A number of infant pain measures have been developed over the past 15 years incorporating behavioural and physiologic indicators; however, no reliable or valid measure exists for infants who are at risk for neurological impairments (NI). The objective of this study was to establish consensus about which behavioural, physiologic and contextual indicators best characterize pain in infants at high, moderate and low levels of risk for NI. Methods: A 39- item, self-administered electronic survey that included infant physiologic, behavioral and contextual pain indicators was used in a two round Delphi consensus exercise. Fourteen pediatric pain experts were polled individually and anonymously on the importance and usefulness of the pain indicators for the 3 differing levels of risk for NI. Results: The strength of agreement between expert raters was moderate in Round 1 and fair in Round 2. In general, pain indicators with the highest concordance for all three groups were brow bulge, facial grimace, eye squeeze, and inconsolability. Increased heart rate from baseline in the moderate and severe groups demonstrated high concordance. In the severe risk group, fluctuations in heart rate and reduced oxygen saturation were also highly rated. Conclusion: These data constitute the first step in contributing to the development and validation of a pain measure for infants at risk for NI. In future research, we will integrate these findings with the opinions of (a) health care providers about the importance and usefulness of infant pain indicators and (b) the pain responses of infants at mild, moderate and high risk for NI.

To determine whether healthcare professionals believe the pain of infants at risk for neurologic impairment differs from that of typical infants. Neonatal intensive care units at 2 tertiary pediatric centers in Canada. Ninety-nine healthcare professionals who practice in the neonatal intensive care unit (51 nurses, 19 physicians, 18 respiratory therapists, 11 other). Participants completed the Pain Opinion Questionnaire. It elicits beliefs regarding the similarity of the pain experienced by infants at mild, moderate, and severe risk for neurologic impairment relative to those without risk for neurologic impairment along 5 pain facets (ie, sensation, emotional reaction, behavioral reaction, communication, incidence). Pain Opinion Questionnaire scores varied by level of risk of neurologic impairment (mild, moderate, severe) and pain facet. Respondents believed infants with risk were overall less likely to experience pain similar to infants without risk as the level of risk increased [F(2,97) = 66.0, P < 0.001] and were more likely to have a reduced pain experience relative to infants without risk as the level of risk increased [F(2,97) = 62.2, P < 0.001]. Pain Opinion Questionnaire scores did not vary due to profession, experience, gender, or age. Professionals expressed the belief that neurologically impaired infants' pain experience is reduced, relative to infants without impairment, as their level of risk for neurologic impairment increases. This belief did not vary due to professional experience or personal factors. Future studies should investigate the source of these beliefs and their impact on the pain management provided to infants with risk for neurologic impairment.

Background: To determine whether healthcare professionals perceive the pain of infants differently due to their understanding of that infant's level of risk for neurological impairment. Method: Neonatal Intensive Care Units (NICU's) at two tertiary pediatric centers. Ninety-five healthcare professionals who practice in the NICU (50 nurses, 19 physicians, 17 respiratory therapists, 9 other) participated. They rated the pain (0–10 scale and 0–6 Faces Pain Scale), distress (0–10), effectiveness of cuddling to relieve pain (0–10) and time to calm without intervention (seconds) for nine video clips of neonates receiving a heel stick. Prior to each rating, they were provided with descriptions that suggested the infant had mild, moderate or severe risk for neurological impairment. Ratings were examined as a function of the level of risk described. Results: Professionals' ratings of pain, distress, and time to calm did not vary significantly with level of risk, but ratings of the effectiveness of cuddling were significantly lower as risk increased [F (2,93) = 4.4, p = .02]. No differences in ratings were found due to participants' age, gender or site of study. Physicians' ratings were significantly lower than nurses' across ratings. Conclusion: Professionals provided with visual information regarding an infants' pain during a procedure did not display the belief that infants' level of risk for neurological impairment affected their pain experience. Professionals' estimates of the effectiveness of a nonpharmacological intervention did differ due to level of risk.

Diagnosing cause of pain in children with severe cognitive impairments is difficult due to their problems with communication. Identification of risk factors for specific pain etiologies might help professionals in this task. The aim of this study was to determine whether child-related characteristics increase risk for specific types of pain. Participants were the caregivers of 41 females and 53 males with moderate to profound mental retardation,* * UK usage: learning disability. who were aged 3 to 18 years 8 months (mean 10:1, SD 4:4) but who communicated at the level of a typical child of 13.8 months (SD 10 months): 44 of the children had cerebral palsy (CP) and 59 a seizure disorder. Caregivers reported the cause of children's episodes of pain for four 1-week periods over 1 year. Logistic regression analyses were used to predict occurrence of specific types of pain using children's demographic, medical, and physical characteristics. Children had 406 episodes of pain due to accident, gastrointestinal conditions, musculoskeletal problems, infection, recurrent conditions, and common childhood causes. Results indicated that a unique set of risk factors predicted each pain type in this sample. Significant risk factors for pain included: lack of visual impairment and leg impairment (accidental pain); seizures, leg impairment, and greater number of medications (non-accidental pain); being male and tube fed (musculoskeletal pain); age <7 years, absence of CP, visual impairment, and less frequent medical monitoring (infection pain); being female and with arm impairment (gastrointestinal pain); and being tube fed and taking fewer medications (common childhood pains). In most cases, models were more specific than sensitive, indicating that the significant predictors are more useful for eliminating potential pain causes. These results suggest that population risk factors may be helpful in structuring diagnostic investigations for individual children with severe cognitive impairments.

Background Children with severe cognitive impairments are believed to suffer pain frequently. Objective To document the frequency, duration, and intensity of pain experienced by children with severe cognitive impairments. Design Cohort study using surveys during 1 year. Setting Tertiary-care pediatric center for 3 provinces in eastern Canada. Participants Caregivers of 94 children and adolescents with moderate to profound mental retardation, aged 3 to 18 years (mean age, 10.1 years [SD, 4.3 years]). Forty-four children had cerebral palsy and 59 had a seizure disorder; 83 lived with family, and 11 in group homes. Main Outcome Measure Caregivers completed 4 semistructured telephone surveys, reporting the cause, duration (in minutes), and intensity (on a scale of 0-10) of children's pain during the previous week. Results A total of 406 episodes of pain occurred. During a 4-week period, 73 children (78%) experienced pain at least once, and 58 (62%) had nonaccidental pain. Accidental pain was most frequent (n = 28 [30%]), followed by gastrointestinal tract (n = 21 [22%]), infection (n = 19 [20%]), and musculoskeletal (n = 18 [19%]) pain. Each week, 33 to 49 children (35%-52%) had pain. Mean pain duration was longer than 9 hours per week (SD, 1.7-2.4 hours). Mean intensity was 6.1 (SD, 2.2) for nonaccidental pain and 3.8 (SD, 2.1) for accidental pain. Children with the fewest abilities had more nonaccidental pain (F_4,89= 3.7;P= .007), and children with greater motor abilities had more accidental pain (F_4,89= 2.8;P= .03). Pain did not vary with demographic characteristics. Conclusions Children with severe cognitive impairments experience pain frequently, mostly not due to accidental injury. Children with the fewest abilities experience the most pain.

To determine whether caregivers of children with cognitive impairment (CI) have systematic beliefs regarding the pain of this special group of children and whether these beliefs are related to their general attitudes towards people with mental challenges, or their experience with, or knowledge about, children with CI. Sixty-five caregivers (52 parents and 13 health care providers) of children with significant CI. Caregivers completed the Mental Retardation Attitude Inventory-Revised and provided information regarding their previous experience and learning about children with CI. They also completed the Pain Opinion Questionnaire, indicating the percentage of children with mild, moderate, or severe/profound CI that they believe experience 5 facets of pain “less than”, “the same as”, or “more than” children without CI: sensation, emotional reaction, behavioral reaction, communication, and frequency. Caregivers believed children's pain Sensation becomes greater, relative to children without CI, as severity of CI increases and that pain reaction is most consistent with pain sensation for children with severe CI. They also believed children with mild CI may over-react to pain. Caregivers' beliefs regarding pain were not influenced by their general attitudes about people with mental challenges or by their experience with children with CI, but those with more learning regarding children with CI believed that they experience pain less than children without CI. Caregivers have a priori beliefs regarding pain in children with CI that vary with level of cognitive impairment and pain facet. These beliefs could impact children's care.

Advances in the treatment of pain for children with severe disabilities have lagged behind that for other children. This is due, in part, to a lack of valid assessment tools for their pain. The non-communicating children's pain checklists are observational pain tools that were developed specifically for children with severe disabilities who are unable to communicate verbally. The non-communicating children's pain checklist-revised has been validated for use with a wide range of pain types in the home. The non-communicating children's pain checklist-postoperative version is used for pain following surgery in the hospital setting. Scores for determining the presence of pain have also been developed. They are appropriate for children with varying degrees of physical, cognitive and communicative impairments.

The non-communicating children's pain checklist (NCCPC) has displayed preliminary validity and reliability for measuring pain in children with severe cognitive impairments (Dev Med Child Neurol 42 (2000) 609). This study provides evidence of the psychometric properties of a revised NCCPC (NCCPC-R) with a larger cohort of children. Caregivers of 71 children with severe cognitive impairments (aged 3-18) conducted observations of their children using the NCCPC-R during a time of pain and a time without pain. Fifty-five caregivers completed a second set of observations. The score results on the NCCPC-R were: internally consistent, significantly related to pain intensity ratings provided by caregivers, consistent over time, sensitive to pain, and specific to pain. Analyses of children's individual scores indicated up to 95% of their scores were consistent. Receiver operating characteristic curves suggest a score of 7 or greater on the NCCPC-R as indicative of pain in children with cognitive impairments, with 84% sensitivity and up to 77% specificity. These results provide evidence of NCCPC-R having excellent psychometric properties.