21.2.1. Clinical evidence profile

A summary of the studies that were included in this review is presented in Table 92.

Table 92

Summary of included studies.

21.4.1. NCCPC-PV

One study validated the NCCPC-PV tool in 24 participants, reporting an inter-rater reliability of 0.82 and 0.78 before and after surgery, respectively. The study was limited by little sampling methodology information and small sample size.

21.4.2. PPP

One study validated the PPP tool in 140 participants, reporting an inter-rater reliability of 0.74, which was then 0.89 in a subgroup of participants who received analgesics. The study was limited by the heterogeneity in the variety and number of analgesia given to participants and because of the use of videotape to blind 1 set of observers.

21.4.3. FLACC

Two studies validated the FLACC tool in a total of 131 participants, reporting overall good reliability (ICC:0.90), with variation in exact agreement (35 to 94% for Face, Cry, Consolability and 17 to 77% for Legs). The study, however, used videotape to blind 1 set of observers to the administration of analgesia for the purposes of testing inter-rater reliability.

21.4.4. INRS

One study validated the INRS tool in 50 participants, reporting moderate to good reliability (ICC:0.65 to 0.80). The study was limited because data were collected over a period of several years and the sample size did not allow for extensive subgroup analysis.

21.5.1. Relative value placed on the outcomes considered

The aim of this review is to:

• Assist parents, carers and healthcare professionals in the recognition of the clinical manifestation of pain, discomfort and distress in children and young people with cerebral palsy.
• Provide guidance on reliable and valid tools used to identify pain in children and young people with cerebral palsy.
• Assist in the onward specialist referral and management for those children and young people with cerebral palsy who are experiencing discomfort, pain and distress.

Validity and reliability of the tools were prioritised as critical outcomes for this review.

21.5.2. Consideration of clinical benefits and harms

There are numerous challenges in recognising the presence of pain, discomfort and distress in all children. This is even more apparent when a child or young person with cerebral palsy has cognitive or communication difficulties and patterns and behaviours associated with pain can present differently from the wider paediatric population.

Using tools such as pain questionnaires can help healthcare professionals and parents and/or carers to recognise appropriate behaviours and assess if pain, distress or discomfort is present. The Committee noted that pain, distress and/or discomfort can be expressed in various ways and may be impacted on by a variety of other factors such as psychological and emotional wellbeing, thirst, hunger and environmental stimulus. Additionally, as their primary advocate, parents and/or carers may be able to recognise pain from a child and young person’s cues and emotional distress and therefore play a major role in helping healthcare, education and social care professionals recognise and assess pain and discomfort.

The Committee agreed from the evidence presented that the Paediatric Pain Profile was the only tool that was validated for use in the post-operative settings. However, the Non-Communicating Children’s Pain Checklist (NCCPC-PV) and the Numeric Pain Rating Scale (INRS) were also reported in the papers as useful tools for assessing degree of pain, distress and discomfort. The Committee accepted that clinical practice was varied and that the identified studies were of low quality, however the most important factor was that pain, discomfort and distress was looked for. The Committee agreed that all healthcare professionals should regularly ask a child or young person with cerebral palsy regarding the presence of any pain, discomfort or distress. The Committee agreed that pain-assessment tools should be used, especially in children with no or limited communication, to help in the assessment. The Committee noted that regular reflection is necessary with regards to the presence, pattern and degree of pain as this can be challenging and can change over time. It was also noted that there is a subjective element to pain questionnaires used in noncommunicating children where healthcare professionals or parents and/or carers have the ability to quantify the qualitative signs of whether the child is in pain, distress and/or discomfort.

The Committee noted that recognising and assessing the presence and severity of pain, discomfort and/or distress needed not only the awareness of parents and/or carers but may also need onward referral to a specialist MDT for assessment of possible cause and ongoing management.

The Committee noted that no evidence was retrieved and there were no tools available for the routine recognition or assessment of sleep disturbances. However, based on their clinical experience they agreed that the use of simple measures such as sleep diaries to recognise sleep difficulties were appropriate to use in routine clinical practice, alongside the primary role of the parents and/or carers. Additionally, the Committee noted that sleep disturbances identified from the causes of pain and/or distress, discomfort and sleep disturbance evidence review (see section 20) were identified by sleep questionnaires and this reinforced their view that the use of sleep questionnaires was appropriate. They pointed out that more complex measures such as polysomnography and actinography were difficult to use in routine clinical practice, which would only be used when healthcare professionals think sleep disturbance is not because of pain or discomfort but because of sleep pathology.

The Committee noted that the use of pain-assessment tools in hospitals to help identify signs and symptoms of pain and discomfort in children and young people with cerebral palsy who cannot communicate had become widespread. However, the evidence based looking at their use in a community setting was very limited. The Committee agreed to develop and prioritise a research recommendation to assess the use of pain-assessment tools by parents and/or carers in a community setting.

21.5.3. Consideration of economic benefits and harms

Knowing the validity and reliability of published tools to identify and aid understanding of discomfort, pain and/or distress in children and young people with cerebral palsy may lead to better identification (and thus more timely management) in this population and has therefore, indirectly, potentially important resource implications. However, this review question is not relevant for economic analysis because it does not involve a decision between alternative courses of action.

21.5.4. Quality of evidence

The main reasons of bias in the included studies were small sample size, unclear sampling procedure and methods used to blind observers.

21.5.5. Other considerations

The Committee recognised that specialist services are not widely available or provided for assessment and management for pain and/or distress, discomfort and sleep distress for children and young people with cerebral palsy.

The recommendations related to this evidence review were based on the evidence and the Committee’s clinical experience.

21.5.6. Key conclusions

The Committee concluded that NCCPC-PV, PPP, FLACC, and INRS tools showed sufficient reliability to be used in a population of children and young people with neurodevelopmental disorders, including cerebral palsy. However, each of them has different characteristics with regards to the level of participation needed by parents and/or carers, time needed to complete the assessment, and the setting in which the tool was validated. Therefore these should be taken into consideration when deciding which tool to use.

Pain, discomfort and distress

90.

Take into account that parents and familiar carers have a key role in recognising and assessing pain, discomfort and distress in children and young people with cerebral palsy.

91.

When assessing pain in children and young people with cerebral palsy:

• recognise that assessing the presence and degree of pain can be challenging, especially if:

  • there are communication difficulties or learning disability (intellectual disability)
  • there are difficulties with registering or processing sensory information (see recommendations 117 and 118)
• ask about signs of pain, discomfort, distress and sleep disturbances at every contact (see recommendations 87, 88, 94, 95 and 100 - 105)
• recognise that pain-related behaviour can present differently compared with that in the wider population.

92.

Assess for other possible causes of distress in the absence of identifiable physical causes of pain and discomfort, such as:

• psychological and emotional distress
• increased sensitivity to environmental triggers
• thirst or hunger.

93.

Consider using tools to identify pain or assess severity of pain in children and young people with cerebral palsy; for example:

• For children and young people with communication difficulties:

  • Paediatric Pain Profile
  • Non-communicating Children’s Pain Checklist – postoperative version
• For children and young people without communication difficulties:

  • Numeric pain rating scale.

Sleep disturbances

94.

When identifying and assessing sleep disturbances in children and young people with cerebral palsy:

• recognise that parents and familiar carers have the primary role in this
• consider using sleep questionnaires or diaries.

95.

Always ask about pain, sleep and distress as part of any clinical consultation.