What are the communication outcomes associated with childhood brain tumour or leukaemia?

From Cancer Guidelines Wiki

Evidence-based recommendation[edit source]

GRADE RecommendationQuestion mark transparent.png Grade Approval
Evidence-based Recommendation 1: Communication

Communication assessment and intervention should be offered to children diagnosed with childhood brain tumour or leukaemia.

Strong 23-Nov-2020 –

Key practice points[edit source]

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Assessment & Intervention

When to assess

  • Communication assessment should occur at or as soon as possible after cancer diagnosis.
  • Communication assessment should occur during the oncology treatment phase and oncology follow-up phase. Multiple assessments during these phases may be required if concerns are indicated by the oncology care team and/or family.
  • Regular monitoring of the child’s communication development should continue throughout the survivorship phase until end of adolescence.

What to assess

  • A comprehensive assessment of speech and language should be conducted. Assessment needs to be tailored to the age and developmental level of the child. Where appropriate, language assessment should include high-level language, discourse-level skills and literacy.
  • Assessment should include a range of individualised assessment procedures such as norm-referenced assessments, criterion-referenced tools, care-giver report and clinical observations across environments.

When to intervene

  • Children diagnosed with CBTL should be provided with early individualised intervention during the oncology treatment phase for identified communication difficulties.
  • Children diagnosed with CBTL should be provided with timely individualised intervention for communication difficulties identified during the oncology follow-up and survivorship phases through until the end of adolescence.

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  • Education about communication development and difficulties in CBTL should be provided to families at cancer diagnosis or as early as possible.
  • Education about communication development and difficulties in CBTL should continue to be provided to families throughout the oncology treatment and follow-up phases.
  • Education about potential long-term communication difficulties in CBTL should be provided to families and education professionals throughout the oncology follow-up and survivorship phases.

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Care Team

  • Speech Pathologists should be involved as integral members of the oncology care team from the point of cancer diagnosis and throughout the oncology treatment and follow-up phases.
  • All members of the oncology care team should be informed about communication difficulties and involved in management throughout the oncology treatment and follow-up phases.
  • Speech Pathologists should work in partnership with oncologists, family members and education professionals to monitor communication development throughout the survivorship phase until the end of adolescence.

Strength of communication recommendation[edit source]

The strength of this recommendation was determined through the use of the GRADE Evidence to Decision (EtD) Framework. The EtD framework provided a structured approach to determine the strength of recommendation, integrating the systematic review findings with pre-specified criteria. The Steering Committee provided input throughout the process. Further detailed information about the EtD process and the complete EtD framework for communication can be found in the accompanying Administrative & Technical Report (Table 9).

Based on the results of the GRADE EtD Framework, this recommendation was rated as strong. This means that the Steering Committee was confident that the desirable effects of adherence to the recommendation outweighed the undesirable effects. The implications of a strong recommendation for patients, clinicians and policy makers as identified by GRADE[1] are:

  • for patients — most people in your situation would want the recommended course of action and only a small proportion would not; request discussion if the intervention is not offered;
  • for clinicians — most patients should receive the recommended course of action; and
  • for policy makers — the recommendation can be adopted as a policy in most situations.

Evidence for communication recommendation[edit source]

The communication recommendation made in this guideline calls for communication assessment and intervention to be offered to children diagnosed with childhood brain tumour or leukaemia (CBTL). This is required because communication difficulties are frequently reported in children diagnosed with CBTL (see Summary of Findings – Communication; Administrative & Technical Report, Table 8). Communication difficulties may be present for some children at the time of cancer diagnosis (e.g. Chieffo et al;[2] Mei & Morgan[3]) and/or during the cancer treatment phase (e.g. Brannon-Morris et al;[4] Taylor et al[5]). However, communication difficulties may also be seen in the longer-term, months or years after the completion of cancer treatment (e.g. Docking et al;[6] Levy et al[7]).

Communication difficulties have been shown across the areas of both speech and language (see Summary of Findings − Communication; Administrative & Technical Report, Table 8). Dysarthria or specific speech difficulties have been reported in this population such as prosodic problems,[8][2][9][10][11] poor articulation/ speech intelligibility,[8][2][12][10][11][13] slow rate,[8][12][9][13] and voice problems.[8][5][12][10][11][13][14][15][16] Fluency difficulties have also been identified.[2][15][17] Mutism and/or dysarthria following surgery for cerebellar tumours surgery are well documented as part of post-operative cerebellar mutism syndrome (pCMS)[8][3][12][4][9][10] [11][13][14][15][16] [17][18][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33] For some children, mutism may resolve to dysarthria and/or language difficulties.[3][9][13][16][20][25][29][31][32] In the leukaemia population, specific speech difficulties have not been identified, but general difficulties in speech have been reported.[5][7]

For language, a range of difficulties have been identified including general oral language skills,[34][8][5][2][35][6][7][9][6][20][21][22] [24][31][32][36][37][38][39][40] problems with word-finding,[9][20][37] narrative (story-telling) skills[41] and high-level language skills (such as inferencing, metaphors, jokes, and problem solving).[41][42][6][38][39][40][43] Literacy difficulties (pre-literacy skills, reading, writing, spelling) have also been reported.[8][42][6][6][44][45][46]

A strength of the literature evidence is that it unambiguously demonstrated the existence of communication difficulties in this population. However, there are a number of distinct limitations related to this body of evidence. First, there has been a reliance on descriptive study designs with small sample sizes. Second, heterogeneity across the literature in study design, participant factors, outcome measures and timing of assessment makes it impossible to determine the prevalence of communication difficulties in this population. Third, there is limited evidence related specifically to children with leukaemia.

In addition to literature evidence, the need for communication assessment and intervention in children diagnosed with CBTL was recognised in evidence systematically gathered from experts, health professionals and consumers. Communication skills were identified as foundational with significant impacts on quality-of-life and related outcomes such as academics, social connectedness and mental health. The potential for cascading effects into adulthood with implications for employment and participation in society was also highlighted.

This source of evidence also emphasised the need to consider diversity in the CBTL population when providing communication management. In the Health Professional and Consumer survey, consideration of risk factors was seen to be particularly important. Identified risk factors included child factors (e.g. age, socio-economic background, hospital stay), tumour properties (e.g. cancer location, brain tumour size) and cancer treatment (e.g. treatment type/combination, frequency) (see Administrative & Technical Report, Box C). Given the inherent diversity in this population, communication assessment and intervention should be offered to all children diagnosed with CBTL in the context of an individualised approach to management.

The desirable effects of providing communication assessment and intervention were rated by the Steering Committee (panel of experts) as large. The desirable effects focused on the improved communication outcomes that could be achieved if assessment and intervention was routinely offered to all children and the downstream benefits on quality-of-life, particularly for social and academic participation. The undesirable effects were rated as small. These related to feelings of stress, worry or frustration that could be experienced by the child or family in relation to testing and communication being “just one more thing to worry about”. Desirable effects were overwhelmingly rated as outweighing undesirable effects.

Evidence for key practice points[edit source]

Assessment & intervention[edit source]

When to assess[edit source]

Assessment of communication needs to occur when a child is first diagnosed with brain tumour or leukaemia, during their cancer treatment and during oncology follow-up. Continued close monitoring by family and health professionals that have regular contact with the child should continue throughout during the survivorship years. This is because children diagnosed with CBTL may experience communication difficulties at one or more points in time across their oncology care and/or during the survivorship years (see Administrative & Technical Report, p. 20–21). Mutism and speech difficulties have mostly been studied and reported on in the shorter-term, while language difficulties have primarily been studied and reported on in the longer-term.

The importance of assessing regularly over time was also supported by the evidence collected from the experts, health professionals and consumers. In the Health Professional and Consumer survey, the need for regular communication assessment at crucial points across childhood was identified (see Administrative & Technical Report, p. 68–69). A clear message seen in both the survey of health professionals and consumers and Steering Committee (panel of experts) comments was that communication outcomes would likely be improved and deleterious effects minimised if assessment and monitoring over time was routinely implemented. In Figure 5, the key practice points regarding assessment timing are embedded in the ‘timing and setting framework’, illustrating direct communication assessment across the first three phases and close monitoring and referral to Speech Pathology services if needed during the survivorship phase.

What to assess[edit source]

A broad range of communication difficulties may be experienced by children diagnosed with CBTL, across speech and language (see Summary of Findings − Communication; Administrative & Technical Report, Table 8). Therefore, it is crucial that comprehensive communication assessment is provided, taking into consideration the developmental level of the child, functional needs and family priorities. The literature evidence highlighted that a variety of assessment tools such as norm-referenced, criterion-referenced, care-giver report and observation across environments could be beneficial in understanding the nature of difficulties in this population (see Administrative & Technical Report, p. 20). The importance of comprehensive assessment was reflected in the health professional and consumer survey evidence where it was rated as very or extremely important by the majority of respondents (see Administrative & Technical Report, p. 68). Figure 6 outlines areas of communication that may need to be considered by the Speech Pathologist when planning a comprehensive communication assessment. This, of course, is dependent on the age of the child and priorities for the child/family.

Figure 5 When to assess and when to monitor communication skills in CBTL

CBTL Figure 5.png

Figure 6 Areas of communication to be considered for assessment in CBTL

CBTL Figure 6.png

When to intervene[edit source]

Timely individualised intervention is crucial for children diagnosed with CBTL with identified communication difficulties. Given the broad range of speech and/ or language difficulties that may be encountered across oncology phases (see Summary of Findings – Communication; Administrative & Technical Report, Table 8), intervention services need to be accessible across oncology care and into survivorship. Regular comprehensive communication assessment and monitoring across phases in the ‘timing and setting framework’ can ensure that timely intervention is provided to those children with identified difficulties. The importance of intervention as required was supported by the health professional and consumer evidence (see Administrative & Technical Report, p. 69). In particular, early intervention, that is, intervention soon after cancer treatment, was raised as crucial in improving communication outcomes. Moreover, ensuring availability of intervention services across oncology phases, including for those children who may have milder difficulties, was discussed.

Care team[edit source]

Communication difficulties are likely to be experienced by children with CBTL over time (see Administrative & Technical Report, p. 20–21) and therefore Speech Pathologists, as experts in communication development and disorders, are crucial members of the oncology care team both acutely and into the longer-term. The importance of the Speech Pathologist in the care team was reinforced by the health professional and consumer group evidence (see Administrative & Technical Report, p. 69, & Table 11). Overwhelmingly, Speech Pathologists were identified as the health professional most commonly involved in the management of communication difficulties, recognised for their direct role in assessment and intervention.

Multidisciplinary care teams were highlighted by health professionals and consumers as essential for the successful management of communication in children diagnosed with CBTL (see Administrative & Technical Report, p. 69, Table 11). A range of multidisciplinary team (MDT) members were identified as serving in the management of communication disorders. The most commonly identified team members included Speech Pathologists, Occupational Therapists, Education professionals, Neuropsychologists, Psychologists, Medical staff, Paediatricians, Nurses, Physiotherapists, Child Life Therapists, Oncologists, as well as families. The roles of each member were varied and included collaboration with the Speech Pathologist, implementing recommendations from the Speech Pathologist, consulting with the Speech Pathologist and family about related factors that may underlie or affect communication, facilitating and guiding overall rehabilitation as well as monitoring skills and advocating for the needs of the child.

Education[edit source]

Communication difficulties in children diagnosed with CBTL are complex. A wide range of difficulties may be experienced from trouble with producing clear speech, to difficulties with reading and writing (see Summary of Findings − Communication; Administrative & Technical Report, Table 8). The functional impacts of such difficulties may also present in varied ways such as finding it hard to make friends or keep up with schoolwork. An additional complicating factor is that difficulties may be experienced across oncology phases (see Administrative & Technical Report, p. 20–21). Given this multi-layered complexity, education for families is crucial. This education needs to be provided early and continued over time. It needs to cover the common communication difficulties that may be experienced by children with CBTL and the potential for communication difficulties to continue or arise in the longer-term. This will provide families and teachers greater awareness and knowledge allowing them to identify communication needs that may arise, make referrals and advocate for the needs of the child, whether it be weeks after their cancer treatment or many years later. Evidence from the experts, health professionals and consumers also underscored the importance of education for families. The Steering Committee (panel of experts) identified that the value placed on communication by families may differ depending on the education/information they have received from health professionals. Families need to be informed about the importance of communication and the potential for communication difficulties as a consequence of CBTL. This will support them to make informed decisions and advocate for the needs of their child. In the survey, families as well as education professionals were identified as key members of the care team with particularly important roles related to day-to-day communication as well as monitoring and advocating (see Administrative & Technical Report, Table 11). However, in order to successfully take on these roles, it is essential that they receive appropriate education regarding communication development and disorders and their impact on academic and social skills.

Implications for clinical practice[edit source]

There are important considerations in planning for the adoption of this guideline. In addition to guiding the process from research to recommendation, the GRADE EtD provided valuable context about the likely impact of this recommendation on clinical practice. As part of the GRADE EtD framework, the Steering Committee (panel of experts) considered five factors that weigh the risk versus benefit of recommendations. Specifically, these considerations included: resources required, cost effectiveness, equity, acceptability and feasibility. The implications on clinical practice described in Table 2 are based upon the detailed information provided in the GRADE EtD framework (see Administrative & Technical Report, Table 9).

Table 2 Implications of communication recommendation for clinical practice

Implications for clinical practice Summary of judgements and comments from GRADE EtD Framework
Resources Required Costs and Savings

The Steering Committee determined it is likely that there would be both costs and savings related to offering communication assessment/intervention to all children diagnosed with CBTL. Possible costs in the short-term may relate to the employment and upskilling of staff. However, there are potential long-term savings for the health sector, disability sector, education sector and families due to reduced impact of communication difficulties long-term.

Cost Effectiveness Favours providing assessment/intervention

The Steering Committee determined that communication assessment/intervention would be more cost effective compared to no communication assessment/intervention.
The short-term costs of offering communication/intervention are likely to be small compared to long-term costs of treating more established disorders later in development. The cost benefits also extend to psychological, educational and employment outcomes.

Equity Increased

The Steering Committee determined that equity would be likely to be increased if communication assessment/intervention was offered to children diagnosed with CBTL. If the recommended minimum standard via a national guideline was implemented, communication assessment/intervention would become routine. This would allow greater access to communication assessment/intervention, regardless of factors such as cultural and linguistic diversity, non-English speaking backgrounds, socio-economic status, geographical location and education levels.

Acceptability Yes

The Steering Committee determined that offering communication assessment/intervention would be acceptable to the majority of stakeholders, including families and health professionals.

Feasibility Yes

The Steering Committee determined that offering communication assessment/intervention would be feasible to incorporate into current services. There are few issues with regards to feasibility, except for funding and staffing resources.
Note: Feasibility was considered by the Steering Committee prior to COVID-19. It is acknowledged that the financial impacts of this pandemic may last several years. However, it has since been considered that implementing this recommendation from a cost perspective within the current climate remains feasible.

Future research directions[edit source]

There is a clear need for larger-scale studies with prospective-longitudinal research designs examining communication outcomes and intervention in children diagnosed with CBTL.[47] In particular, additional research focusing on communication outcomes in children diagnosed with leukaemia is warranted. This includes further examination of communication difficulties longitudinally across all timepoints and settings (e.g. diagnosis, during oncology treatment, oncology-follow-up and survivorship). Research co-designed with consumer partners that specifically focus on communication outcomes of children from culturally, linguistically, socially, and geographically diverse communities will also ensure continued progress towards equitable and accessible services across all populations of children diagnosed with CBTL. Greater accuracy in identifying prevalence of communication difficulties in children diagnosed with CBTL is also needed, as are larger-scale studies focusing on effectiveness of communication rehabilitation programs.[47]

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