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Headline
This study established that no single intervention is acceptable to parents and professionals, but proposed a toolkit of interventions, which needs further development before evaluation in a trial.
Abstract
Background:
Eating, drinking and swallowing difficulties are common in young children with neurodisability. These difficulties may lead to inadequate calorie intake, which affects a child’s nutrition, growth and general physical health.
Objective:
To examine which interventions are available that can be delivered at home by parents to improve eating, drinking and swallowing in young children with neurodisability and are suitable for investigation in pragmatic trials.
Design:
This was a mixed-methods study that included focus groups, surveys, an update of published systematic reviews of interventions, a systematic review of measurement properties of existing tools, evidence mapping, evidence synthesis, a Delphi survey and stakeholder workshops.
Setting:
The study was carried out in NHS hospitals, community services, family homes and schools.
Participants:
Parents of children who had neurodisability and eating, drinking and swallowing difficulties. Professionals from health and education. Young people with eating, drinking and swallowing difficulties or young people who had previously experienced eating, drinking and swallowing difficulties.
Data sources:
Literature reviews; national surveys of parents and professionals; focus groups with parents, young people and professionals; and stakeholder consultation workshops.
Review methods:
An update of published systematic reviews of interventions (searched July–August 2017), a mapping review (searched October 2017) and a systematic review of measurement properties using COnsensus-based Standards for the Selection of health status Measurement INstruments (COSMIN) methodology (searched May 2018).
Results:
Significant limitations of the available research evidence regarding interventions and tools to measure outcomes were identified. A total of 947 people participated: 400 parents, 475 health professionals, 62 education professionals and 10 young people. The survey showed the wide range of interventions recommended by NHS health professionals, with parents and professionals reporting variability in the provision of these interventions. Parents and professionals considered 19 interventions as relevant because they modified eating, drinking and swallowing difficulties. Parents and professionals considered 10 outcomes as important to measure (including Nutrition, Growth and Health/safety); young people agreed that these were important outcomes. Stakeholder consultation workshops identified that project conclusions and recommendations made sense, were meaningful and were valued by parents and professionals. Parents and health professionals were positive about a proposed Focus on Early Eating, Drinking and Swallowing (FEEDS) toolkit of interventions that, through shared decision-making, could be recommended by health professionals and delivered by families.
Limitations:
The national surveys included large numbers of parents and professionals but, as expected, these were not representative of the UK population of parents of children with eating, drinking and swallowing difficulties. Owing to the limitations of research evidence, pragmatic decisions were made about interventions that might be included in future research and outcomes that might be measured. For instance, the reviews of research found only weak or poor evidence to support the effectiveness of interventions. The review of outcome measures found only limited low-level evidence about their psychometric properties.
Conclusions:
Opportunities and challenges for conducting clinical trials of the effectiveness of the FEEDS toolkit of interventions are described. Parents and professionals thought that implementation of the toolkit as part of usual NHS practice was appropriate. However, this would first require the toolkit to be operationalised through development as a complex intervention, taking account of constituent interventions, delivery strategies, implementation and manualisation. Subsequently, an evaluation of its clinical effectiveness and cost-effectiveness could be undertaken using appropriate research methods.
Future work:
Initial steps include FEEDS toolkit development and evaluation of its use in clinical practice, and identification of the most robust methods to measure valued outcomes, such as Nutrition and Growth.
Trial registration:
Current Controlled Trials ISRCTN10454425.
Funding:
This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 22. See the NIHR Journals Library website for further project information.
Contents
- Plain English summary
- Scientific summary
- Chapter 1. Background and aims
- Chapter 2. Summary of how the methods relate to the three aims of the study
- Chapter 3. Aim 1: systematic reviews
- Objectives
- Background
- Methods
- Inclusion criteria
- Screening/data extraction/quality assessment
- Results
- Update of the Marshall et al. review focusing on children with autism spectrum disorder
- Update of the National Institute for Health and Care Excellence cerebral palsy in under-25s review
- Update of the review of oropharyngeal dysphagia by Morgan et al.
- Strengths and limitations of systematic reviews
- Patient and public involvement in systematic reviews
- How did the systematic review findings inform the next step?
- Chapter 4. Aim 1: mapping review
- Chapter 5. Aim 2: first round of focus groups
- Chapter 6. Aim 1: measurement properties review
- Chapter 7. Aim 2: national survey
- Objectives
- Methods
- Questionnaire development: UK clinical practice in managing eating, drinking and swallowing difficulties in young children with neurodisability
- Procedure
- Results
- Use of interventions
- Delivery of interventions
- Acceptability of interventions
- Effectiveness of interventions
- Time taken to produce change
- Potential benefits of interventions for eating, drinking and swallowing difficulties
- Use of tools to measure outcomes
- Summary of national survey
- Strengths and limitations of national survey
- Patient and public involvement in national survey
- How did the national survey inform the next steps?
- Chapter 8. Aim 3: evidence synthesis
- Chapter 9. Aim 3: second round of focus groups
- Chapter 10. Aim 3: Delphi survey
- Objectives
- Methods
- Study design
- Questionnaire development
- Procedure
- Analysis
- Results
- Sample characteristics
- Interventions
- Outcomes
- Summary of the Delphi survey findings
- Strengths and limitations of the Delphi survey
- Patient and public involvement in the Delphi survey
- How did the Delphi survey findings inform the next study stage?
- Chapter 11. Aim 3: stakeholder consultation workshops
- Objectives
- Methods
- Data processing
- Results
- Use of eating, drinking and swallowing difficulty interventions in current clinical practice
- Toolkit of interventions
- Support for families using the toolkit
- Ways to measure outcomes
- Designing future research (including randomisation and recruitment selection)
- Potential barriers to recruitment
- Summary
- Patient and public involvement in the stakeholder consultation workshops
- Strengths and limitations of the stakeholder consultation workshops
- How did the stakeholder consultation workshops inform the next study stage?
- Chapter 12. Aim 2: young people’s focus groups
- Objective
- Methods
- Participant recruitment and selection
- Procedure
- Results
- Summary of the young people’s focus groups
- Strengths and limitations of the young people’s focus groups
- Patient and public involvement in young people’s focus groups
- How did the young people’s focus groups inform the next study stage?
- Chapter 13. Final outline of the FEEDS toolkit of interventions
- Chapter 14. Discussion
- Chapter 15. Conclusions and recommendations
- Acknowledgements
- References
- Appendix 1. Parent advisory group terms of reference
- Appendix 2. Search strategies for systematic reviews
- Appendix 3. Data extraction for systematic reviews
- Appendix 4. Search strategies for mapping review
- Appendix 5. Study designs used to evaluate each intervention in the mapping review
- Appendix 6. First round of focus groups topic guide
- Appendix 7. Initial list of outcome measurement tools compiled for searching
- Appendix 8. Search strategies for measurement properties review (example for MEDLINE)
- Appendix 9. Sifting eligibility criteria for measurement properties review
- Appendix 10. The COSMIN ratings of measurement property papers
- Appendix 11. The COSMIN quality assessment of measurement properties assessed in each paper
- Appendix 12. Second round of focus groups topic guide
- Appendix 13. Original intervention and outcome terms used in the national survey and the revised terms for use in the Delphi survey
- Appendix 14. Characteristics of respondents who completed both rounds of Delphi survey and those who only completed round 2
- Appendix 15. Interventions viewed as essential by over 67% of parents and health professionals in round 1 of the Delphi survey
- Appendix 16. Parents’ and health professionals’ ratings of interventions on round 1 of the Delphi survey
- Appendix 17. Parents’ and health professionals’ ratings of interventions on round 2 of the Delphi survey
- Appendix 18. Parents’ and health professionals’ ratings of outcomes on round 1 of the Delphi survey
- Appendix 19. Parents’ and health professionals’ ratings of outcomes on round 2 of the Delphi survey
- Appendix 20. List of outcome measures generated in the stakeholder consultation workshops
- Glossary
- List of abbreviations
- List of supplementary material
About the Series
Declared competing interests of authors: Dawn Craig is a member of the National Institute for Health Research (NIHR) Health Services and Delivery Research programme’s Prioritisation Committee (Researcher led) (2018 to present). Diane Sellers received a research grant from Nutricia Advanced Medical Nutrition UK (Wiltshire, UK) from 2017 to 2018, honorarium payments from Nutricia Advanced Medical Nutrition UK from 2015 to 2019 and an honorarium payment from Nutricia Advanced Medical Nutrition UK in 2018. Morag Andrew received fees from Nutricia Advanced Medical Nutrition UK to attend a conference in which she was presenting industry partner research work and lecture fees/symposium presentation fees from Nutricia Advanced Medical Nutrition UK and Nestlé SA (Vevey, Switzerland). Elaine McColl was a member of the NIHR Journals Library Editorial Group from 2013 to 2016, and was an editor for the NIHR Programme Grants for Applied Research series from 2008 to 2016, with a fee paid to her employing organisation. Allan Colver sat on the priority setting panel of the NIHR Health Technology Assessment Maternal and Child Health Research committee from 2013 to 2017. Jill Cadwgan reports personal fees from Novartis Pharmaceuticals (Basel, Switzerland) and Ispen Pharmaceuticals (Paris, France).
Article history
The research reported in this issue of the journal was funded by the HTA programme as project number 15/156/02. The contractual start date was in July 2017. The draft report began editorial review in November 2019 and was accepted for publication in March 2020. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HTA editors and publisher have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the draft document. However, they do not accept liability for damages or losses arising from material published in this report.
Last reviewed: November 2019; Accepted: March 2020.
- Parent-delivered interventions used at home to improve eating, drinking and swal...Parent-delivered interventions used at home to improve eating, drinking and swallowing in children with neurodisability: the FEEDS mixed-methods study
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