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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, what assessments are effective in identifying the presence of mental health problems?
24.1. Introduction
Children and young people with cerebral palsy are at greater risk of mental health problems such as depression and anxiety in comparison with the general age comparison population. Despite a growing awareness of this, in routine care, the motor impairment is often the main focus of assessment and management, with signs and symptoms of mental health problems missed or misinterpreted.
Mental health problems may therefore not be picked up nor treated effectively early enough in their presentation and thus they may continue into adulthood. The presence of communication and/or cognitive difficulties can make the identification of mental health problems in the child or young person especially challenging.
There are many mental-health assessment tools that are used in general clinical practice but not all of these are appropriate for use in children and young people with cerebral palsy, particularly if there are difficulties in communication and cognition; therefore, current clinical practice varies to a great degree. It is essential that assessments that are sensitive to the symptoms of mental health problems in children and young people with cerebral palsy are identified for use in practice to help identification, allowing timely, appropriate treatment thereby enabling improved outcomes.
The aim of this review is to determine what assessments are effective in identifying the presence of mental health problems in cerebral palsy.
24.2. Description of clinical evidence
The included studies aimed to assess reliability and validity of the following tools (Table 101).
Table 101
Description of tools assessed.
Five studies (Beckung 2008, Bjorgaas 2013, McCollough 2008, 2009, Parkes 2008) were included in this review that aimed to determine what assessments are effective in identifying the presence of mental health problems in children or young people with cerebral palsy. Three studies were undertaken in the UK (McCollough 2008, 2009, Parkes 2008); 1 in Sweden (Beckung 2008); and 1 in Norway (Bjorgaas 2013).
The total sample size ranged between 56 and 818 children and young people with cerebral palsy and their families. Participants in the included studies ranged in age from 2 years to 18 years.
Three studies looked at the usefulness of the Child Health Questionnaire (CHQ) scale in a cerebral palsy population (Beckung 2008, McCollough 2008, 2009) and, in particular, Beckung 2008 studied the association between this tool and GMFCS levels. The McCollough 2008 paper is a review that includes a total of 13 different studies reporting on the validity and reliability of CHQ. Ten of the included studies were based in the USA, 2 in Australia, and 1 in Brazil.
The 2 remaining studies assessed the use of SDQ in a population of children with cerebral palsy, by reporting on its reliability (Parkes 2008) or by comparing it to the Kiddie-SADs instrument (Bjorgaas 2013).
No studies have been retrieved that reported on the other tools listed in the review protocol:
- Self-report Mood and Feelings Questionnaire (MFQ)
- Hospital Anxiety and Depression Scale (HADs)
- Beck Youth Inventories
- CP Child – Quality of Life Questionnaire
- Child Behaviour Checklist (CBCL)
- General Health Questionnaire (GHQ – DH)
Validity designs were prioritised, and the following were considered as the main criteria for assessing the quality of each study, as reported by Jerosch-Herold 2005:
- sample size
- sampling methodology
- blinding of raters
- statistical analysis.
For full details, see the protocol in Appendix D. See also the study selection flow chart in Appendix F, study evidence tables in Appendix J and the exclusion list in Appendix K.
24.2.1. Clinical evidence profile
Table 102 and Table 103 below present the mental-health assessment tools and CHQ and Gross Motor Function Classification System (GMFCS) levels correlation as reported by Beckung 2008, respectively.
Table 102
Clinical evidence: mental health assessment tools.
Table 103
Clinical evidence: CHQ and GMFCS levels correlation as reported by Beckung 2008.
24.3. Economic evidence
This review question is not relevant for economic analysis because it does not involve a decision between alternative courses of action.
No economic evaluations of tools to identify the presence of mental health problems 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.
24.4. Evidence statements
24.4.1. Child Health Questionnaire (CHQ)
Two studies reported on the usefulness of the CHQ scale in a population of 2,047 participants. Reliability ranged between 60% and 97%, and it varied between different GMFCS levels between 63% and 77%. The evidence did not show a statistically significant correlation between the mental health domain of the CHQ tool and GMFCS levels.
24.4.2. Strengths and Difficulties Questionnaire (SDQ)
Two studies reported on the usefulness of the SDQ scale in a total population of 874 participants. One of the 2 studies reported that sensitivity ranged between 13% and 100% depending on the domain assessed, with the domain ‘emotional symptoms’ scoring the highest. Specificity ranged between 25% and 87%, with ‘hyperactivity problems’ scoring the highest. The other study reported a reliability score of 69% for this scale.
24.4.3. Self-report Mood and Feelings Questionnaire (MFQ)
No evidence was retrieved for this tool.
24.4.4. Hospital Anxiety and Depression Scale (HADs)
No evidence was retrieved for this tool.
24.4.5. Beck Youth Inventories (BYI)
No evidence was retrieved for this tool.
24.4.6. Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL –Child) and Cererbal Palsy Quality of Life Questionnaire for Adolescents (CP QOL –Teen)
No evidence was retrieved for this tool.
24.4.7. General Health Questionnaire (GHQ)
No evidence was retrieved for this tool.
24.5. Evidence to recommendations
24.5.1. Relative value placed on the outcomes considered
The aim of this review was to determine what assessments are effective in identifying the presence of mental health problems in children and young people with cerebral palsy.
Sensitivity and specificity of the tools were prioritised as critical outcomes for decision-making.
24.5.2. Consideration of clinical benefits and harms
The Committee agreed that most commonly seen mental health problems in children and young people with cerebral palsy had been covered by NICE guidelines and the Committee made a recommendation to that effect.
The Committee decided it was important to provide some context and point out that children and young people with cerebral palsy have an increased prevalence of mental health problems due to a number of factors, including the primary interplay of the cerebral lesions and secondary social and environmental interactions. They noted that there was a lack of evidence on the prevalence of mental health problems in children and young pople with cerebral palsy. The Committee discussed how mental health problems are generally under-recognised in the cerebral palsy population, particularly in individuals with problems of cognition and communication. Furthermore, the Committee agreed that children and young people with cerebral palsy have an increased prevalence of autism and ADHD as well as behaviours that challenge, which can be triggered by other problems, such as the presence of chronic pain and sleep difficulties.
The Committee agreed that early recognition of mental health problems should be conducted in all settings, as some of the early signs might be more evident in non-medical situations. For example, the social and environmental challenges within an education setting and family situation can be very different. The Committee therefore made a recommendation to this effect, in that all members of the health, social and educational multidisciplinary teams should consider, assess, or flag up problems and/or concerns and reflection on these areas and this should occur at each consultation.
The Committee, however, recognised that assessment of these disorders can be challenging, especially in those children and young people who cannot communicate or who have cognitive difficulties. Therefore, the Committee recommended that both health practitioners and carers should reflect on other possible causes for changes in emotional states and/or behaviours, such as acute or chronic pain, physical symptoms or social factors. These factors sometimes lead to misinterpretation of the signs and symptoms for mental health problems.
The Committee discussed the importance of early identification and timing of assessment, as they agreed that often, mental health issues are only considered at the ‘annual review’. The Committee recommended referral for a specialist assessment when there concerns about a mental health and/or psychological state is present.
With regards to the tools that aid identification of mental health problems, the Committee examined the evidence presented and agreed to recommend those validated in the literature, without being too prescriptive. This has been done to reflect the need to have everyone in the multidisciplinary team feeling confident, able and competent to record signs and symptoms that could indicate a mental health disorder. The Committee agreed that because it depends on who is doing the assessment, training in the use of standardised assessment tools is also equally important.
The Committee discussed how there was a lack of evidence about the prevalence of mental health problems in this population, particularly in young people and young adults. They noted that improved guidance would allow greater access to suitable services for young people and young adults with cerebral palsy and therefore developed and prioritised a research recommendation to assess the prevalence of mental health problems in children and young people (up to the age of 25) with cerebral palsy.
24.5.3. Consideration of economic benefits and harms
Knowing the prevalence of mental health problems and the tools to identify them in children and young people with cerebral palsy may lead to better prediction, identification (and thus more timely management) and possibly prevention of mental health problems in this population. This 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.
24.5.4. Quality of evidence
Main reasons of bias in the included studies were no evidence on test/retest reliability and under-powered studies.
24.5.5. Other considerations
The recommendations related to this evidence review were based on the evidence and the Committee’s clinical experience.
24.5.6. Key conclusions
The Committee noted that the overall prevalence of mental health disorders in children and young people with cerebral palsy is higher than in the general population. Additionally, common impairments seen in children and young people with cerebral palsy, such as learning disabilities or communication difficulties, could jeopardise an accurate diagnosis. For this reason, the Committee noted that an early recognition was essential and that a referral should be done in cases where difficulties were present. The screening tools identified by the evidence have been validated in the cerebral palsy population and present with good sensitivity and specificity, therefore are considered to be effective for recording signs and symptoms that could indicate a mental health disorder.
24.6. Recommendations
- 106.
Follow the relevant NICE guidelines when identifying and managing mental health problems and psychological and neurodevelopmental disorders in children and young people with cerebral palsy:
- 107.
Take into account that parents and familiar carers have a central role in recognising and assessing emotional difficulties and mental health problems in children and young people with cerebral palsy.
- 108.
Recognise that children and young people with cerebral palsy have an increased prevalence of:
- mental health and psychological problems, including depression, anxiety and conduct disorders
- behaviours that challenge, which may be triggered by pain, discomfort or sleep disturbances
- neurodevelopmental disorders, including autism spectrum disorders (ASD) and attention deficit hyperactivity disorder (ADHD).
- 109.
Recognise that emotional and behavioural difficulties (for example, low self-esteem) are reported in up to 1 in 4 children and young people with cerebral palsy.
- 110.
Any multidisciplinary team should:
- recognise that mental health problems and emotional difficulties can be as important as physical health problems for children and young people with cerebral palsy
- explore such difficulties during consultations
- recognise that assessing psychological problems can be challenging in children and young people with communication difficulties or learning disability (intellectual disability).
- 111.
Think about and address the following contributory factors if a change in emotional state occurs in a child or young person with cerebral palsy:
- frustration associated with communication difficulties
- social factors, such as a change in home circumstances or care provision.
- 112.
Use validated tools, such as the Child Health Questionnaire and the Strengths and Difficulties Questionnaire, to assess mental health problems in children and young people with cerebral palsy.
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