Dysphagia following acute cervical spinal cord injury (DAISY)

325 Pages·2017·11.21 MB·English

Dysphagia following acute cervical spinal
cord injury (DAISY): identification of current
practice and development of a swallow
screening tool

Jacqueline McRae
NIHR/HEE Clinical Doctoral Research Fellow

A thesis submitted to the Division of Medicine, University College,
London for the degree of Doctor of Philosophy

OCTOBER 2017
1
Declaration

I, Jacqueline McRae confirm that the work presented in this thesis is my own.
Where information has been derived from other sources, I confirm that this has
been indicated in the thesis.

J. McRae

2
Acknowledgements
Thank you to my supervisory team, Anton Emmanuel and Christina Smith who shared
the belief in my research and showed me the way. A special thanks to Suzanne Beeke,
my third supervisor who taught me to dig deeper in the analysis of the qualitative data.
Huge thanks to Hugh Boardman and Ian Redsell of the Delphi Process Research Unit,
for generously sharing their experience and systems for the DAISY project. Only their
endless patience made the Delphi process possible. Thanks to the inspiring clinical
team at RNOH who share my passion for better clinical care - Sarah Morgan, Rik Fox,
Pauline Robertson, Angela Gall and many others. I learned so much from them and
they gave me the freedom to pursue those burning questions. The practicalities of day-
to-day research would not have happened without the regular and total support from
Iva Hauptmannova and Ufedo Miachi at the Research Innovation Centre, Stanmore.
They ensured the DAISY project progressed from protocol to reality.

I am grateful to Janine Khare and Roganie Govender who provided listening ears and
words of encouragement along the way. My official NIHR mentor, Rachel Elliot,
delivered over and above her remit with sensitivity and humour. Paula Dhiram provided
true friendship alongside informal statistical support, for which I am indebted.

To my mum who taught me about ambition and how to achieve it with hard work and to
my dad whose time on this earth ended before my work was done, I know you are
watching over us. Thank you to my sister Sabrina who lives so far away but is always
in my heart. My wonderful ‘other parents’ Mary and Derek have sustained me with
supportive words, good food and homely comforts.

None of this would have been possible without the love, devotion and endless support
from my husband James and amazing children, Benjamin, Charlotte, Alex and Isabelle.
They understood the sacrifices made were for the good of people with a life but without
a voice.

This work is dedicated to all the patients who I have had the pleasure of working with
and my patient advisory group who taught me so much about the world through their
eyes.
Financial support was provided by the NIHR Clinical Doctoral Research Fellowship.
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Conference abstract submissions
MCRAE, J. 2014. DAISY project - a problem that's hard to swallow. Respiratory Information for
Spinal Cord Injury (RISCI) conference. London.
MCRAE, J. 2015a. The DAISY project: Identifying dysphagia in acute cervical spinal cord injury.
Intensive Care Society State of the Art. London: Journal of the Intensive Care Society.
MCRAE, J. 2015b. Wide range of practice in identifying dysphagia after acute cervical spinal
cord injury in multi-disciplinary teams. European Society of Swallowing Disorders.
Barcelona: Dysphagia, March 2016, 32: 1-89.
MCRAE, J. 2016a. The DAISY Project. Royal College of Speech and Language Therapists
Research Champion Event. London.
MCRAE, J. 2016b. The DAISY project infographics. Guttman Spinal Conference. Oswestry.
MCRAE, J. 2016c. The DAISY project: The story so far. Respiratory Information for Spinal Cord
Injury (RISCI) conference. Sheffield.
MCRAE, J. 2016d. A national survey exploring how multi-disciplinary staff identify dysphagia in
acute cervical spinal cord injury. UK Swallow Research Group. London.
MCRAE, J., SMITH, C., BEEKE, S. & EMMANUEL, A. 2016a. Dysphagia in acute cervical
spinal cord injury: developing international expert consensus on identification and
management using the Delphi process. International Spinal Cord Society. Vienna.
MCRAE, J., SMITH, C., BEEKE, S. & EMMANUEL, A. V. 2017. Dysphagia in acute cervical
spinal cord injury-development of a screening tool through a Delphi process of expert
consensus. European Society of Intensive Care Medicine. Vienna: Intensive Care
Medicine Experimental 2017, 5(Suppl 2):0644.
MCRAE, J., SMITH, C., EMMANUEL, A. & BEEKE, S. 2016b. The lived experience of people
with acute cervical spinal cord injury in non-specialist units in UK. International Spinal
Cord Society Conference. Vienna.

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Abstract
Cervical spinal cord injury (CSCI) patients have complex needs, often requiring
tracheostomy, ventilation and surgery. These multiple factors have been linked to the
development of oropharyngeal dysphagia with reported incidences of 8-80%. Resulting
complications include respiratory impairment, increased morbidity and prolonged
length of stay in an intensive care unit (ICU). This delays transfer to specialised units
for on-going rehabilitation. Currently there is no clinical guidance for the effective
identification and management of oropharyngeal dysphagia following CSCI. The aim of
the DAISY project was to develop a screening tool to improve the recognition of
oropharyngeal dysphagia risks. In turn this would lead to earlier intervention and
improved outcomes.

The two studies in the first part of the thesis investigated variations in clinical practice
between specialised and non-specialised units and across professional groups through
the perspective of staff and patients. A multi-disciplinary staff survey revealed
significant differences in oropharyngeal dysphagia care, tracheostomy management
and ventilatory weaning that were likely to affect outcomes. Interviews with CSCI
patients and their carers about their experience of care across multiple settings
identified a number of themes reflecting the process of adjustment and transition post-
injury. Many reported a long wait for the ‘golden opportunity’ to transfer to a spinal unit
for rehabilitation before recovery could take place. Variable management of eating and
communication problems had a long-lasting impact.

In the second part of the thesis, the literature review and study findings generated 85
statements for a Delphi consensus process on oropharyngeal dysphagia risk factors
and management. An international expert panel achieved consensus on 73% of
statements after two rounds, although methods of screening and assessing
oropharyngeal dysphagia remained unclear. Based on these results, the DAISY
swallow screening tool was developed and a final study evaluated usability of the tool
in two non-specialised units. A pragmatic observational approach was employed to
permit the tool to embed in current practice, however staff engagement and participant
recruitment was limited making the value of the tool inconclusive tool.

Further multi-site research is needed to evaluate the validity and utility of the DAISY
screening tool. Prospective outcome data is required to verify variations in clinical
management across units and the contribution of specialist guidance to improve clinical
practices.
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Table of Contents
Declaration .................................................................................................................. 2
Acknowledgements .................................................................................................... 3
Conference abstract submissions............................................................................. 4
Abstract ....................................................................................................................... 5
List of figures ............................................................................................................ 12
Abbreviations ............................................................................................................ 13
1. Introduction to the thesis .................................................................................. 15
i. Aims and objectives of the thesis ................................................................ 17
ii. Outline of the thesis ...................................................................................... 18
2. The nature of cervical spinal cord injury and oropharyngeal dysphagia ...... 21
2.1. Introduction ............................................................................................... 21
Spinal cord anatomy ............................................................................ 23
Cervical spinal cord anatomy ............................................................... 24
Spinal cord injury ................................................................................. 26
Cervical spinal cord injury .................................................................... 27
Laryngeal functions.............................................................................. 29
Identifying oropharyngeal dysphagia ................................................... 32
Literature Search ....................................................................................... 37
Epidemiology of SCI ............................................................................ 39
Epidemiology of CSCI and oropharyngeal dysphagia .......................... 40
Oropharyngeal dysphagia screening and assessment in CSCI ............ 42
Respiratory interventions following CSCI ............................................. 45
CSCI and spinal surgery ...................................................................... 52
Clinical management of associated complications ............................... 54
i. Oral hygiene ................................................................................................ 54
ii. Communication ........................................................................................... 55
iii. Nutrition ....................................................................................................... 56
Risks to mortality in CSCI .................................................................... 59
i. Age ............................................................................................................. 60
ii. Gender ........................................................................................................ 61
iii. Cause of death ............................................................................................ 62
Conclusion ................................................................................................. 63
3. Study 1: A UK survey of multi-professional staff on clinical practice with
acute CSCI patients....................................................................................... 65
Introduction ............................................................................................... 65
Background ............................................................................................... 66
Clinical guidance for critical care.......................................................... 66
Multi-disciplinary team working in critical care...................................... 68
MDT and tracheostomy care ................................................................ 69
MDT management of CSCI and oropharyngeal dysphagia .................. 70
Study aims ........................................................................................... 71
Methods ..................................................................................................... 72
Survey design and development .......................................................... 72
Study ethics ......................................................................................... 73
Participants .......................................................................................... 73
Survey distribution ............................................................................... 74
Data analysis ....................................................................................... 75
Results ....................................................................................................... 77
Survey responses ................................................................................ 77
Respondent demographics .................................................................. 77
Specialised versus non-specialised units ............................................. 79
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Clinical care pathways and medical specialisms .................................. 79
Respiratory management .................................................................... 81
Nutrition ............................................................................................... 83
Swallowing .......................................................................................... 85
Communication .................................................................................... 86
Professional group responses ............................................................. 87
Qualitative data .................................................................................... 92
Discussion ................................................................................................. 94
Specialised and non-specialised units ................................................. 95
Decision-making across professional groups ....................................... 99
Limitations ......................................................................................... 102
Conclusion ............................................................................................... 103
4. Study 2: The reported experiences of CSCI patients with oropharyngeal
dysphagia and their family from acute care to rehabilitation .................. 105
Introduction ............................................................................................. 105
Literature review...................................................................................... 106
The experience of spinal cord injury .................................................. 107
Environment ...................................................................................... 108
Symptoms ......................................................................................... 114
Summary ........................................................................................... 117
Aims of study ..................................................................................... 117
Method ..................................................................................................... 118
Study ethics ....................................................................................... 118
Participant recruitment ....................................................................... 118
Topic guide development ................................................................... 120
Interview procedure ........................................................................... 121
Data management ............................................................................. 121
Thematic Analysis ............................................................................. 121
Results ..................................................................................................... 122
Participant demographics .................................................................. 122
Emerging themes .............................................................................. 124
Adjustment ........................................................................................ 124
Transitions ......................................................................................... 127
“The golden opportunity” .................................................................... 129
“When you can’t eat”.......................................................................... 131
Communication .................................................................................. 133
“In the hands of the nurses and doctors”............................................ 136
Discussion ............................................................................................... 139
The experience of having oropharyngeal dysphagia and being non-vocal
140
Issues of admission to multiple non-specialised units ........................ 142
Delays to spinal unit transfer .............................................................. 143
Limitations ......................................................................................... 144
Conclusion ............................................................................................... 146
5. Study 3: Using an e-Delphi approach to gain expert consensus on
oropharyngeal dysphagia identification and management in CSCI ........ 147
Introduction ............................................................................................. 147
Literature review ................................................................................ 148
The e-Delphi Process ........................................................................ 152
Expert panel recruitment .................................................................... 153
Anonymity .......................................................................................... 153
Controlled feedback ........................................................................... 154
Rigour ................................................................................................ 154
Study aims ......................................................................................... 155
Method ..................................................................................................... 155
Ethics ................................................................................................ 157
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Recruitment of steering group ............................................................ 157
Recruitment of expert panel ............................................................... 158
Electronic Delphi system ................................................................... 158
Statement generation ........................................................................ 159
Delphi procedure and analysis ........................................................... 159
Results ..................................................................................................... 161
Expert panel demographics ............................................................... 162
Final statement selection ................................................................... 163
Delphi Round One ............................................................................. 164
Preparation for Round Two ................................................................ 171
Delphi Round Two ............................................................................. 172
Descriptive statistics .......................................................................... 176
Delphi results summary ..................................................................... 177
Discussion ............................................................................................... 179
The nature of oropharyngeal dysphagia in CSCI ............................... 179
Methods of identifying oropharyngeal dysphagia in CSCI .................. 180
Intervention ........................................................................................ 181
Limitations ......................................................................................... 182
Conclusion ............................................................................................... 184
6. Study 4: Development of a swallow risk screening tool for CSCI and
feasibility study of its use in two major trauma centres........................... 185
Introduction ............................................................................................. 185
Background ............................................................................................. 186
Clinical pathways in SCI care ............................................................ 187
Oropharyngeal dysphagia screening tools ......................................... 188
Methodology ............................................................................................ 191
Pragmatic approach........................................................................... 192
Study aims ......................................................................................... 193
Methods ................................................................................................... 193
Ethics ................................................................................................ 193
Screening tool development .............................................................. 193
Development and use of decision forms ............................................ 194
Site recruitment and infrastructure ..................................................... 195
Participant recruitment ....................................................................... 197
Study protocol.................................................................................... 197
Data analysis ..................................................................................... 199
Results ..................................................................................................... 200
Protocol integrity ................................................................................ 200
Data collection forms ......................................................................... 200
Staff characteristics ........................................................................... 201
Recruitment ....................................................................................... 201
Acceptability of the tool ...................................................................... 202
Staff Feedback .................................................................................. 203
Discussion ............................................................................................... 203
Current clinical practices .................................................................... 204
Multi-disciplinary involvement ............................................................ 206
Limitations ......................................................................................... 207
Future directions ................................................................................ 208
Conclusion ............................................................................................... 208
7. Final discussion and future directions ........................................................... 210
Summary and implications of the research ........................................... 211
Strengths and limitations of the research ............................................. 219
Recommendations and future research ................................................ 221
Conclusions ............................................................................................. 223
References .............................................................................................................. 224
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Appendices ............................................................................................................. 249

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List of tables
Table 1.1 Overview of thesis studies, methodology and data outputs ......................... 18
Table 2.1 Cervical spine levels and associated motor innervations ............................. 25
Table 2.2 ASIA Impairment Scale classification .......................................................... 27
Table 2.3 PICO table of search terms ......................................................................... 38
Table 2.4 Summary of studies reporting oropharyngeal dysphagia following CSCI ..... 41
Table 2.5 Summary table of studies reporting tracheostomy incidence and respiratory
interventions in CSCI patients ..................................................................................... 47
Table 3.1 Distribution of survey link to professional bodies and networks ................... 74
Table 3.2 Final survey with response types for analysis.............................................. 76
Table 3.3 Respondents’ per hospital type separated in specialised and non specialised
units ............................................................................................................................ 78
Table 3.4 Hospital size and number of level 3 beds in specialised and non-specialised
units ............................................................................................................................ 78
Table 3.5 Respondents professional across specialised and non-specialised units .... 78
Table 3.6 Number of professionals per site ................................................................. 78
Table 3.7 Non-specialised respondents links to spinal outreach teams ....................... 79
Table 3.8 Clinical care pathways available across specialised and non-specialised
units ............................................................................................................................ 80
Table 3.9 Clinical specialism per unit type .................................................................. 80
Table 3.10 Tracheostomy team members per unit type .............................................. 81
Table 3.11 Lead professional for ventilator weaning ................................................... 82
Table 3.12 Ventilator weaning protocol by unit type .................................................... 82
Table 3.13 Ventilator weaning methods by unit type ................................................... 83
Table 3.14 Routine capping by unit type ..................................................................... 83
Table 3.15 Criteria for non-oral feeding by unit type .................................................... 84
Table 3.16 Criteria to transition to PEG by unit type .................................................... 84
Table 3.17 Criteria to start eating by unit type ............................................................. 85
Table 3.18 Methods to screen for dysphagia by unit type ........................................... 85
Table 3.19 SLT swallow assessments by unit type ..................................................... 86
Table 3.20 Use of cuff deflation and speaking valve for speech by unit type ............... 86
Table 3.21 Tracheostomy team membership by professional group ........................... 87
Table 3.22 Lead professional for ventilator weaning by professional group................. 87
Table 3.23 Ventilator weaning process by professional group .................................... 88
Table 3.24 Impact of inflated cuff by professional group ............................................. 88
Table 3.25 Routine capping by professional group ..................................................... 89
Table 3.26 Criteria for non-oral feeding by professional group .................................... 89
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