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National Guideline Alliance (UK). Cerebral palsy in under 25s: assessment and management. London: National Institute for Health and Care Excellence (NICE); 2017 Jan. (NICE Guideline, No. 62.)
Review question: In children and young people with cerebral palsy, which interventions are effective in managing discomfort and/or pain and distress with no apparent cause?
22.1. Introduction
Children and young people with cerebral palsy may experience pain from a range of causes and sometimes the cause may not be identifiable, despite careful assessment. There is evidence that pain and discomfort have detrimental effects both on a person and their family’s quality of life through its impact on health, social participation and cognitive and emotional wellbeing.
Clinicians are often faced with a child or young person with severe cerebral palsy in marked discomfort, but unable to communicate and talk about the nature, location or severity of the discomfort of the discomfort or pain they are experiencing. It is important that relevant members of the multidisciplinary team contribute to the assessment and to identifying appropriate and effective interventions for these children and young people. Currently, a range of treatments are available and are used in practice, but guidance is needed on which of these are most effective.
The aim of this review is to assess the clinical and cost effectiveness of interventions for managing discomfort and/or pain and distress with no apparent cause in children and young people with cerebral palsy.
22.2. Description of clinical evidence
No relevant clinical studies were identified for this review.
For more details, see the review protocol in Appendix D. See also the study selection flow chart in Appendix F, and the exclusion list in Appendix K.
22.2.1. Clinical evidence profile
No relevant clinical studies were identified for this review.
22.3. Economic evidence
No economic evaluations of interventions relevant to managing discomfort and/or pain and distress were identified in the literature search conducted for this guideline. Full details of the search and economic article selection flow chart can be found in Appendix E and Appendix F, respectively.
This review question was not prioritised for de novo economic modelling. To aid the consideration of cost effectiveness, relevant resource and cost-use data are presented in Appendix G.
22.4. Evidence statements
22.4.1. Pain control
No evidence was retrieved for this outcome.
22.4.2. Distress
No evidence was retrieved for this outcome.
22.4.3. Physical function
No evidence was retrieved for this outcome.
22.4.4. Emotional function
No evidence was retrieved for this outcome.
22.4.5. Adverse events
No evidence was retrieved for this outcome.
22.4.6. Health-related quality of life
No evidence was retrieved for this outcome.
22.4.7. Parent and/or carer outcomes (for example, anxiety)
No evidence was retrieved for this outcome.
22.5. Evidence to recommendations
22.5.1. Relative value placed on the outcomes considered
The aim of this review was to determine which interventions are more clinically and cost effective for managing discomfort and/or pain and distress in children and young people with cerebral palsy.
22.5.2. Consideration of clinical benefits and harms
The Committee noted that when faced with a child or young person experiencing pain or discomfort it was often important to use the clinical expertise of the multidisciplinary team working closely with the parents and primary carers in order to determine the likely cause, and to assess the severity and target therapy. Several existing NICE clinical guidelines potentially relevant to this include guidelines on constipation, gastro-oesophageal reflux disease, spasticity, headache, low back pain and urinary tract infection have been identified as relevant to the management of pain and/or discomfort and distress in children and young people with cerebral palsy.
The Committee discussed how, in children and young people in whom the cause of pain or discomfort was not certain, management can be challenging. Pain may arise for a wide variety of reasons and may be obscure in origin. Both acute and chronic pain can be physiological, inflammatory or neuropathic in nature and can be complicated by the central neurological impairment in cerebral palsy, where pain signals can be increased or decreased in severity. The Committee were aware that pain was predominantly associated with musculo-skeletal discomfort or associated with a comorbidity (see section 20 on causes of pain and/or discomfort, distress and sleep disturbances), and therefore they agreed it was important to first think about common explanations and explore any potential triggers.
As pain is both a both a sensory and emotional experience, the Committee noted that emotional and psychological factors, such as anxiety, depression and mental health disorders can intensify pain. As pain is multi-factorial, the Committee agreed that the approach to management should consider the physical contributors but also focus on the psychological and emotional elements of the pain. This was particularly important if the cause was not apparent and amenable to treatment.
The Committee agreed, in line with existing WHO guidance (WHO guidelines on the pharmacological treatment of persisting pain in children with medical illnesses) and clinical practice, that pain management should be a stepwise process. However, they also noted the important role of managing anxiety and depression at an early stage. In cases where a child needed analgesia this should be employed and, if necessary, escalated stepwise to provide adequate pain relief if possible with a reduced risk of adverse effects due to treatment. There should be a clear, reflective plan depending on pain duration, pattern and severity.
Subsequent to a trial of analgesic management, if presumed pain and/or distress persisted, the Committee recommended monitoring the duration, pattern and severity of pain and/or discomfort and to adjust this management accordingly.
In a tiered approach to pain management without obvious causation, a more detailed assessment involving a specialist pain multidisciplinary team may be needed. Within the specialist management plan, further pain interventions, including anticonvulsants and neuropathic pain relief, could be considered.
Onward referral to specialist pain teams may include experts in paediatric palliative care. The Committee also noted the recommendations on pain management included in the NICE guideline on end of life care in children and young people and considered them appropriate before end of life.
The Committee noted that additional areas to consider are the parents’ and/or carers’ ability to cope with the child or young person’s experience of pain, and its duration and severity.
The Committee also noted evidence that many of the interventions routinely used in children and young people with cerebral palsy can cause an acute episode of pain. These include physical therapy, particularly stretches, the use of poorly fitting or inappropriate orthotics and equipment, botulinum toxin injections and surgical procedures. It is important to reflect with the child and young person and their families and/or carers that these interventions may reduce pain and discomfort in the longer term. It is obvious that all professionals involved in the care of children and young people with cerebral palsy should implement strategies to minimise the pain and discomfort caused by any intervention.
22.5.3. Consideration of economic benefits and harms
A treatment is more likely to be cost effective if it used for the correct indication, whereas if the wrong indication is targeted there is a potential waste of resources. Therefore the cost effectiveness of an intervention to reduce pain or distress will depend on whether the cause of pain or distress has been identified prior to the initiation of treatment; therefore, identifying the cause should be first action.
However, recognising the cause of pain or distress can be complex and expert specialist assessment may be needed. Consequently, the Committee emphasised the importance of seeking the expertise of an appropriate multidisciplinary team, or a specialist, if needed. Increased referral might of course entail a need for additional resources, but this should lead to better identification, more timely management and hence a cost-effective use of NHS resources. On the other hand, the Committee noted that, on occasion, healthcare professionals directly and regularly involved in the care of children and young people with cerebral palsy may possess expertise in this area, evading the need for further specialist assessment in all cases.
Prior to contact with a healthcare professional, the Committee highlighted the importance of identifying sleep hygiene issues and sensory contributors such as environments that are excessively bright or noisy and of discussing these matters with parents and/or carers. Simple measures to deal with these aspects would not be costly and might have important benefits.
The Committee highlighted that if a patient was suspected of being in pain they would start a trial of analgesics for approximately 2 weeks until the cause was identified. Analgesics are relatively inexpensive, at a cost of less than £1 per day, therefore an initial trial would not incur a significant opportunity cost if pain and/or distress was incorrectly targeted.
Only after an unsuccessful trial of analgesics and a reassessment considering the duration, severity and pattern of symptoms would anticonvulsants, diazepam or fentanyl patches be considered as a second-line treatment. Therefore, recommendations would follow a stepwise escalation generally implementing the cheapest interventions first.
Even though analgesics are associated with a lower cost it is important to reiterate that the cost effectiveness of any interventions included in this review cannot be ascertained in the absence of clinical-effectiveness data.
The Committee noted that the use of non-pharmacological treatments would depend on the cause of pain and/or distress. Moreover, non-pharmacological treatments are unlikely to be undertaken if the cause cannot be identified.
22.5.4. Quality of evidence
No relevant studies were included for this review.
22.5.5. Other considerations
The recommendations related to this evidence review were based on the Committee’s clinical experience.
22.5.6. Key conclusions
No evidence has been retrieved that answers the clinical question.
22.6. Recommendations
- 96.
For reversible causes of pain, discomfort and distress identified in children and young people with cerebral palsy, treat the cause as appropriate using targeted interventions in line with the following NICE guidelines:
- 97.
For common interventions used in the management of cerebral palsy (such as physical therapies, botulinum toxin A injections and surgery) that can cause acute pain:
- advise the child or young person and their parents or carers that these interventions may reduce discomfort in the long term
- minimise discomfort during these procedures.
- 98.
In the absence of an identifiable cause of pain, discomfort or distress in a child or young person with cerebral palsy:
- take into account the impact of anxiety, depression or other possible mental health problems
- consider a ‘stepped approach’ trial of simple analgesia (such as paracetamol and/or ibuprofen) for mild to moderate pain
- monitor the duration, pattern and severity of symptoms.
- 99.
If a trial of analgesia is unsuccessful, refer the child or young person to a specialist pain multidisciplinary team, which may be a palliative care service, for a more detailed assessment.
22.7. Research recommendations
None identified for this topic.
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