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

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Evidence-based recommendation[edit source]

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

Swallowing assessment and management 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

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

What to assess

  • A comprehensive swallowing assessment should be conducted. Assessment needs to be tailored to the age and developmental level of the child. All phases of the swallow (pre-oral anticipatory, oral-preparatory, oral and pharyngeal) need to be assessed.
  • Videofluoroscopy Swallowing Study (VFSS) should be considered on a case-by-case basis as part of the assessment protocol to examine aspiration if required.

When to intervene

  • Children diagnosed with CBTL should be provided with early individualised management for swallowing difficulties during the oncology treatment phase.
  • Children diagnosed with CBTL should be provided with individualised management for swallowing difficulties identified by the oncology care team and/or family in 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 phase to manage swallowing.
  • All members of the oncology care team should be informed about swallowing difficulties and involved in their management as needed throughout oncology phases.
  • Speech Pathologists should work in partnership with oncologists and family members to monitor swallowing throughout the survivorship phase until the end of adolescence.

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  • Education about swallowing difficulties in CBTL should be provided to families at cancer diagnosis or as early as possible.
  • Education about swallowing difficulties in CBTL should continue to be provided to families throughout the oncology treatment and follow-up phases.

Strength of recommendation[edit source]

The strength of this recommendation was determined through the use of the GRADE 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 swallowing can be found in the accompanying Administrative & Technical Report (Table 10).

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

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Evidence for swallowing recommendation[edit source]

The swallowing recommendation made in this guideline calls for swallowing assessment and management to be offered to children diagnosed with childhood brain tumour or leukaemia (CBTL). This is vital because swallowing difficulties are frequently reported in children with CBTL (see Summary of Findings – Swallowing; Administrative & Technical Report, Table 8). Difficulties are most likely to be experienced during oncology treatment (e.g. Goncalves et al[2]; Newman et al[3]). For some children diagnosed with CBTL, particularly those children diagnosed with brain tumour, swallowing difficulties may continue into the longer-term (e.g. Brannon Morris et al;[4] Mei & Morgan[5]).

Acute swallowing difficulties in children with CBTL are typically characterised by difficulties across the oral preparatory and oral phase (e.g. reduced lip seal, food/ liquid residue post-swallow, food spillage/drooling, impaired transfer of food in mouth) and the pharyngeal phase (e.g. initiation of swallow delayed, food/liquid residue in pharynx, coughing/gurgly voice, aspiration) of the swallow.[6][5][7] General clinical factors or pre-oral anticipatory factors that can impact swallowing ability such as fatigue and alertness/awareness may also be affected[5][7] and therefore need to be assessed. During the time when children are receiving cancer treatment, swallowing difficulties can be severe, with aspiration of food or liquids possible.[8][3] As a result, supplemental tube feeding may be required.[6][5][7][9][4]

It was clear from the literature evidence that swallowing difficulties exist in children with CBTL and are frequently seen immediately or soon after cancer treatment. However, there are limitations in the body of evidence that need to be considered. To date, studies have relied on descriptive designs and relatively small samples. Heterogeneity across studies in relation to participant factors, outcome measures and timing of assessments limit the ability to draw conclusions about the prevalence of swallowing difficulties in this population. Furthermore, there is a paucity of evidence related specifically to the swallowing outcomes of children with leukaemia.

The need for swallowing assessment and management for children diagnosed with CBTL was reflected in evidence systematically gathered from experts, health professionals and consumers. The possibility for swallowing difficulties to result in aspiration and to be life-threatening was emphasised. Ensuring adequate nutrition in the acute period was also highlighted. Longer-term swallowing difficulties and their potential to influence quality-of-life were also recognised such as the impact on independence, family mealtimes and social eating/fitting in with peers at school.

This source of evidence also emphasised the need to consider diversity in the CBTL population when providing swallowing 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), swallowing-related factors (e.g. prolonged tube feeding, poor physical positioning), 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, swallowing assessment and management should be offered to all children diagnosed with CBTL in the context of an individualised approach.

The desirable effects of providing swallowing assessment and management were rated by the Steering Committee (panel of experts) as large. The desirable effects focused on the safe swallowing of fluids and food and the prevention of aspiration and subsequent health complications such as chest infections and pneumonia. The undesirable effects were rated as small and related to the potential for stress/anxiety related to assessment for children and family. The desirable effects were rated as outweighing the undesirable effects.
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Evidence for key practice points[edit source]

Assessment & intervention[edit source]

When to assess[edit source]

Swallowing assessment is vital at cancer diagnosis and during the oncology treatment phase. Research has identified that swallowing difficulties are frequent during these phases.[6][5][7][8][3][9][10][2][11][12][13] During oncology follow- up and survivorship, continued close monitoring of swallowing by family and involving health professionals with referral as needed is warranted given some evidence of longer-term swallowing impacts.[5][7][9][10][11]

The evidence from experts, health professionals and consumers also supported the need for swallowing assessment to occur in the acute phases. One member of the Steering Committee (panel of experts) reported that the assessment of swallowing should be as commonplace as measuring temperature during the post-operative period. The importance of safe swallowing and the need to minimise the risk of aspiration and subsequent chest infections/pneumonia during oncology treatment were key themes in the committee’s discussion. Regular swallowing assessment and/or monitoring was viewed as necessary by the majority of health professionals and consumers in the survey results and was thought to contribute to improved swallowing outcomes (see Administrative & Technical Report, p. 69). In Figure 7, key practice points regarding timing of swallowing assessment are embedded in the ‘timing and setting framework’.

Figure 7 When to assess and when to monitor swallowing skills in CBTL

CBTL Figure 7.png

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What to assess[edit source]

Given that swallowing difficulties may be across multiple phases of swallowing,[6][5][7] comprehensive assessment that examines pre-oral anticipatory factors such as alertness and awareness, oral-preparatory, oral and pharyngeal phases of the swallow is needed. The systematic review of the evidence revealed most swallowing assessments were conducted via clinical observation with or without a specific checklist (see Administrative & Technical Report, p. 20). Five studies included a Videofluoroscopy Swallowing Study (VFSS) in the assessment of children with CBTL to identify aspiration[5][8][3][9][11] indicating that it may be a useful tool to consider as part of assessment for this population. The rationale for performing VFSS was not definitive in the literature. Thus, Speech Pathologists should be guided by the findings from bedside assessment and their clinical judgement and expertise to make decisions about the need for VFSS on a case-by-case basis. The provision of comprehensive swallowing assessment for children diagnosed with CBTL was seen as important by the majority of the health professionals and consumers and related to improved swallowing outcomes for this population (see Administrative & Technical Report, p. 69).

When to intervene[edit source]

Given that children with CBTL are likely to show evidence of swallowing difficulties at diagnosis and/or during oncology treatment (see Summary of Findings – Swallowing; Administrative & Technical Report, Table 8), immediate management is needed at these early oncology phases for those with identified difficulties following assessment. This was reflected in comments from the experts, health professionals and consumers who overwhelmingly recognised the need for swallowing management during the acute phases of diagnosis and cancer treatment. They identified that appropriate management would result in improved swallowing outcomes and reduce longer-term adverse effects related to medical health and quality of life.

In the oncology follow-up and survivorship phases, some children diagnosed with CBTL may require direct swallowing management as research evidence shows persistent difficulties can be possible, although limited in the length of follow-up.[5][7][9][4][11] In such cases, monitoring and identification of swallowing difficulties by the oncology care team and/or family is crucial. It is important that those responsible for monitoring can refer to Speech Pathology services for swallowing assessment and decisions regarding management can subsequently be made on a case-by-case basis.
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Care team[edit source]

Speech Pathologists have expertise in the assessment and management of swallowing and therefore should be integral to the oncology care team. Health professional and consumer survey evidence supported this, with Speech Pathologists the most frequently identified member required as part of the team in the management of swallowing (see Administrative & Technical Report, p. 69 and Table 12).

The importance of multidisciplinary care teams in joint management of swallowing was also identified by the Health Professional and Consumer Group (see Administrative & Technical Report, p. 69). In particular, they acknowledged the essential roles of dietitians and doctors in assessing nutritional status/needs and recommending/providing supplemental feeding options. The role of doctors, nurses, oncologists, psychologists, paediatricians as well as family in the monitoring of overall clinical state and day-to-day swallowing functioning was highlighted.

Education[edit source]

Considering the potentially life-threatening consequences of swallowing difficulties and possible long-term quality of life impacts, it is crucial that families of children with CBTL receive appropriate education about the nature and course of such difficulties. Education about aspiration and its medical consequences, safe swallowing practices, food/fluid consistencies, supplemental feeding and the importance of monitoring swallowing into the long-term is needed. As swallowing difficulties are most likely evident during the acute oncology phases (see Administrative & Technical Report, p. 20–21), education needs to be provided at or soon after cancer diagnosis, with continued education throughout oncology treatment. Upon hospital discharge, education about the potential for long-term swallowing difficulties and management and the role of the family in monitoring and referral is needed. One member of the Steering Committee (panel of experts) recognised that the value placed on swallowing assessment and management may be influenced by how well-informed they have been, thus, emphasising the key role of education about swallowing in this population.

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 3 are based upon the detailed information provided in the GRADE EtD framework (see Administrative & Technical Report, Table 10).
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Table 3 Implications of swallowing recommendation for clinical practice

Implications for clinical practice Summary of judgements and comments from GRADE EtD Framework
Resources Required Negligible costs

The Steering Committee determined that there were negligible costs related to offering swallowing assessment/management to children diagnosed with CBTL. They recognised that the resources to provide assessment and management in the acute phases were already available, however, longer-term follow-up could require additional resources in relation to staff, education and assessment tools. Health professionals time was the main resource identified.

Cost Effectiveness Favours providing assessment/management

The Steering Committee determined that swallowing assessment/management would be more cost effective compared to no swallowing assessment/management. Providing management was seen as outweighing the potential negative impacts of swallowing difficulties related to aspiration, chest infection and hospital stay length.

Equity Increased

The Steering Committee determined that equity would be likely to be increased if swallowing assessment/management was offered to children diagnosed with CBTL. In particular, equity may be increased for children from non-English speaking backgrounds or lower socio-economic backgrounds where families may be less able to identify swallowing difficulties or advocate for needs. One member of the Steering Committee noted that more targeted approaches to identifying which children need swallowing assessment/management would be preferable to the current “status-quo”.

Acceptability Yes

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

Feasibility Yes

The Steering Committee determined that offering swallowing assessment/management would be feasible to incorporate into current services. However, they did recognise that this would depend on funding and staffing resources. It was recognised that it is not onerous and mostly requires time from the Speech Pathologist.
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 swallowing outcomes and intervention in children diagnosed with CBTL.[14] In particular, additional research focusing on swallowing outcomes in children diagnosed with leukaemia is warranted. This includes further examination of swallowing 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 swallowing 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 swallowing difficulties in children diagnosed with CBTL is also needed, as are larger-scale studies focusing on effectiveness of swallowing rehabilitation programs.[14]

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References[edit source]

  1. Schünemann H, Brozek J, Guyatt G, Oxman A. The GRADE Working Group. GRADE Handbook for Grading Quality of Evidence and Strength of Recommendations. McMaster University and Evidence Prime Inc; 2013 Available from: gdt.guidelinedevelopment.org/app/handbook/handbook.html.
  2. 2.0 2.1 Docking KM, Murdoch BE, Ward EC. Underlying factors impacting differential outcomes in linguistic function subsequent to treatment for posterior fossa tumour in children. Brain & Language [cited 2020 Jun 6];2004;91(1 SPEC. ISS.):29-30 Available from: https://www.sciencedirect.com/science/article/abs/pii/S0093934X04001221.
  3. 3.0 3.1 3.2 3.3 Newman LA, Boop FA, Sanford RA, Thompson JW, Temple CK, Duntsch CD. Postoperative swallowing function after posterior fossa tumor resection in pediatric patients. Childs Nerv Syst 2006 Oct;22(10):1296-300 Available from: http://www.ncbi.nlm.nih.gov/pubmed/16761160.
  4. 4.0 4.1 4.2 Morris EB, Li C, Khan RB, Sanford RA, Boop F, Pinlac R, et al. Evolution of neurological impairment in pediatric infratentorial ependymoma patients. J Neurooncol 2009 Sep;94(3):391-8 Available from: http://www.ncbi.nlm.nih.gov/pubmed/19330288.
  5. 5.0 5.1 5.2 5.3 5.4 5.5 5.6 5.7 5.8 Mei C, Morgan AT. Incidence of mutism, dysarthria and dysphagia associated with childhood posterior fossa tumour. Childs Nerv Syst 2011 Jul;27(7):1129-36 Available from: http://www.ncbi.nlm.nih.gov/pubmed/21442268.
  6. 6.0 6.1 6.2 6.3 Taylor OD, Ware RS, Weir KA. Speech pathology services to children with cancer and nonmalignant hematological disorders. J Pediatr Oncol Nurs 2012 Mar;29(2):98-108 Available from: http://www.ncbi.nlm.nih.gov/pubmed/22472483.
  7. 7.0 7.1 7.2 7.3 7.4 7.5 7.6 Morgan AT, Sell D, Ryan M, Raynsford E, Hayward R. Pre and post-surgical dysphagia outcome associated with posterior fossa tumour in children. J Neurooncol 2008 May;87(3):347-54 Available from: http://www.ncbi.nlm.nih.gov/pubmed/18209951.
  8. 8.0 8.1 8.2 Nagy P, Beckmann N, Cox S, Sheyn A. Management of Vocal Fold Paralysis and Dysphagia for Neurologic Malignancies in Children. Ann Otol Rhinol Laryngol 2019 Nov;128(11):1019-1022 Available from: http://www.ncbi.nlm.nih.gov/pubmed/31215235.
  9. 9.0 9.1 9.2 9.3 9.4 Lee WH, Oh BM, Seo HG, Kim SK, Phi JH, Chong S, et al. One-year outcome of postoperative swallowing impairment in pediatric patients with posterior fossa brain tumor. J Neurooncol 2016 Mar;127(1):73-81 Available from: http://www.ncbi.nlm.nih.gov/pubmed/26619998.
  10. 10.0 10.1 Cohen E, Berry JG, Camacho X, Anderson G, Wodchis W, Guttmann A. Patterns and costs of health care use of children with medical complexity. Pediatrics 2012 Dec;130(6):e1463-70 Available from: http://www.ncbi.nlm.nih.gov/pubmed/23184117.
  11. 11.0 11.1 11.2 11.3 Fayoux P, Bonne NX, Hosana G. Hypopharyngeal pharyngoplasty in the treatment of severe aspiration following skull base tumor removal: experience in pediatric patients. Arch Otolaryngol Head Neck Surg 2011 Jan;137(1):60-4 Available from: http://www.ncbi.nlm.nih.gov/pubmed/21242548.
  12. Hanna LMO, Botti M, Araujo RJG, Damasceno JM, Mayhew ASB, de Andrade GC. Oral manifestations and salivary pH changes in children undergoing antineoplastic therapy. Pesquisa Brasileira Em Odontopediatria E Clinica Integrada [cited 2020 Jun 6];2016;16(1):403-410 Available from: http://revista.uepb.edu.br/index.php/pboci/article/view/3081.
  13. Ribeiro ILA, Limeira RRT, Dias de Castro R, Ferreti Bonan PR, Valença AMG. Oral Mucositis in Pediatric Patients in Treatment for Acute Lymphoblastic Leukemia. Int J Environ Res Public Health 2017 Nov 28;14(12) Available from: http://www.ncbi.nlm.nih.gov/pubmed/29182564.
  14. 14.0 14.1 Hodges R, Campbell L, Chami S, Knijnik SR, Docking K. Communication and swallowing outcomes of children diagnosed with childhood brain tumor or leukemia: A systematic review. Pediatr Blood Cancer 2021 Feb;68(2):e28809 Available from: http://www.ncbi.nlm.nih.gov/pubmed/33219751.

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