Oral Oncology 48 (2012) 343348

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Oral Oncology
journal homepage: www.elsevier.com/locate/oraloncology

Assessment and management of dysphagia in patients with head and neck

cancer who receive radiotherapy in the United Kingdom A web-based survey q
Justin W.G. Roe a,b,e,, Paul N. Carding c,d,f, Peter H. Rhys-Evans a,b,e, Kate L. Newbold a,e,
Kevin J. Harrington a,b,e, Christopher M. Nutting a,b,e
a
Head and Neck Unit, The Royal Marsden Hospital NHS Foundation Trust, Fulham Road, London SW3 6JJ, UK
b
The Institute of Cancer Research, 237 Fulham Road, London SW3 6JB, UK
c
Department of Speech, Voice and Swallowing, Freeman Hospital, Newcastle upon Tyne Hospitals NHS Foundation Trust, High Heaton, Newcastle upon Tyne NE7 7DN, UK
d
Faculty of Medical Sciences, University of Newcastle upon Tyne, NE1 7RU, UK

a r t i c l e i n f o s u m m a r y

Article history: We undertook a service evaluation to establish how oropharyngeal dysphagia is managed in head and
Received 20 September 2011 neck cancer patients receiving radiotherapy in the United Kingdom. A web-based survey including 23
Accepted 1 November 2011 open and closed questions was distributed to Speech and Language Therapy (SLT) teams via a national
Available online 29 November 2011
network of Royal College of Speech and Language Therapists (RCSLT) special interest groups with mem-
bers involved in head and neck cancer care. Forty-six teams responded to the survey and 89% completed
Keywords: the questionnaire fully. Fifty percent (n = 21/42) of the SLT teams reported routinely seeing patients prior
Deglutition disorders
to commencing radiotherapy. Baseline oromotor assessment (85.7% (n = 36/42)), clinical dysphagia
Head and neck neoplasms
Radiotherapy
assessment (90.5% (n = 38/42)) and information provision on the potential treatment effects on swallow-
Rehabilitation ing (97.6% (n = 41/42)) and communication ability (85.7% (n = 36/42)) were the most common compo-
Service evaluation nents of initial evaluation. In keeping with expert opinion and emerging evidence, prophylactic
swallowing exercises were administered by 71.4% (n = 30/42) of teams targeting specic aspects of swal-
lowing, although the nature, intensity and duration of programmes varied. A range of measures are used
to monitor progress during treatment. Our survey highlighted that resource limitations affect service pro-
vision with some teams managing the consequences of treatment rather than proactive multidisciplinary
intervention prior to and during treatment. Cancer- and treatment-related dysphagia can impact signif-
icantly on a broad range of outcomes following radiotherapy. There is variability in dysphagia service
provision to patients before, during and following treatment. Comprehensive evaluation of swallowing
function prior to treatment and proactive management can yield benets for patients, inform multidis-
ciplinary case management and support those involved in clinical trials to accurately determine treat-
ment effects.
2011 Published by Elsevier Ltd.

Introduction culties may be further compounded if patients have pre-radiother-

Oropharyngeal dysphagia is a signicant acute and chronic con-
sequence of toxicity experienced by patients being treated with
(chemo-)radiotherapy for head and neck cancer. Swallowing dif-
q
This study was presented as a poster at the British Association of Head and Neck
Oncologists (BAHNO) Scientic Meeting on 28th April 2011 at the Royal College of
Physicians in London.
Corresponding author at: Head and Neck Unit, The Royal Marsden Hospital NHS
Foundation Trust, Fulham Road, London SW3 6JJ, UK. Tel.: +44 207 808 2815; fax:
+44 207 808 2336.
E-mail addresses: justin.roe@nhs.net (J.W.G. Roe), paul.carding@nuth.nhs.uk
(P.N. Carding), peter.rhys-evans@rmh.nhs.uk (P.H. Rhys-Evans), kate.newbold@
rmh.nhs.uk (K.L. Newbold), kevin.harrington@icr.ac.uk (K.J. Harrington), chris.
nutting@rmh.nhs.uk (C.M. Nutting).
e
Tel.: +44 207 808 2586; fax: +44 207 808 2235.
f
Tel.: +44 191 213 7646.
apy surgery or require salvage surgery. Speech and language
therapists (SLTs) are specialists in the assessment and rehabilita-
tion of oropharyngeal dysphagia and in the UK they are core mem-
bers of the head and neck multidisciplinary team (MDT).1
National standards highlight that all patients who are undergo-
ing surgery or chemoradiation should be seen by a specialist SLT
pre-treatment2 and professional guidelines emphasise the impor-
tance of pre-treatment intervention, information provision and
ongoing rehabilitation.3 It has been stated that a pre-treatment
swallowing evaluation is an essential component of the informed
consent process.4 It is a requirement arising from the Improving
Outcomes Guidance for Head and Neck Cancer Services1 that SLTs
should work closely with other members of the MDT to prepare pa-
tients for potential short term and longer term treatment effects on
swallowing. Pre-treatment assessment should include a

1368-8375/$ - see front matter 2011 Published by Elsevier Ltd.

doi:10.1016/j.oraloncology.2011.11.003
344 J.W.G. Roe et al. / Oral Oncology 48 (2012) 343348
swallowing evaluation and information on likely interventions to
address any impairment. Information acquired can then inform
the likely swallowing prognosis following oncological treatment
and the multidisciplinary team in optimising swallowing
outcomes.
While the SLT role is recognised in pre-treatment evaluation
and ongoing management with specic groups such as laryngec-
tomy patients and those undergoing major head and neck resec-
tions and reconstruction, it is unclear how consistently services
are being provided to those being treated with denitive radiother-
apy/chemoradiotherapy. Variability in practice patterns have been
reported in the United States with reference to the timing and nat-
ure of rehabilitative interventions with patients undergoing
radiotherapy.5
There is emerging evidence that proactive intervention with pa-
tients and implementation of prophylactic swallowing exercises
may improve swallowing outcomes following radiotherapy.68 A
recent review on this topic has emphasised that more, carefully de-
signed clinical trials are required to develop the evidence base for
prophylactic swallowing exercises.9
In this study, we wanted to evaluate dysphagia services to pa-
tients with head and neck cancer who receive (chemo-)radiother-
apy. Information was collected under the following headings:
 Referral, assessment and pre-treatment intervention.
 On-treat service provision.
 Follow-up care.
Materials and methods
We developed a questionnaire comprising 23 open and closed
questions to establish UK SLT service provision with specic refer-
ence to swallowing difculties using Survey Monkey (a web-based
survey tool available at www.surveymonkey.com). Free-text
opportunities were provided throughout to increase our under-
standing of how any individual service was delivered. The survey
was available for completion by respondents in September and
October 2010.
After the initial question formulation by two SLTs and a Consultant
Clinical Oncologist (JWGR, PNC and CMN), the survey was piloted
with ve SLTs with a special interest in dysphagia who work with pa-
tients with head and neck cancer. They provided advice on specic
wording, areas of possible redundancy and duplication, survey format
and suggested other areas for investigation. The nal version of the
survey (see Appendix A) and accompanying protocol were scienti-
cally reviewed and approved as a service evaluation by the Royal
Marsden NHS Foundation Trust Clinical Committee for Research.
The survey was distributed with a letter of invitation via a na-
tional network of Royal College of Speech and Language Therapists
Special Interest Groups with members working in head and neck
cancer. It was specied in the invitation that teams should nomi-
nate a representative therapist to respond on behalf of the SLT
team to the questionnaire to reduce duplication and provide a
more representative picture of UK service delivery.
Results
Results are expressed as simple frequencies or percentages of
the whole group or subgroup as detailed. In the UK there are 34
cancer networks with one or two centres in each network. A total
of 46 SLT teams involved in service provision to radiotherapy pa-
tients responded from across the United Kingdom. Of those who
responded, 89% (n = 41/46) completed the survey fully. Team loca-
tions, referral numbers and stafng details are included in Table 1.
Teams which responded (n = 37/46) were based in centres which
Table 1
Locations of responding teams, number of referrals per annum and stafng.
Responses
Country
England 35 (76.1%)
Wales 7 (15.2%)
Scotland 3 (6.5%)
Northern Ireland 1 (2.2%)
Referrals received p.a.
050 11 (23.9%)
50100 13 (28.3%)
100150 10 (21.7%)
150200 2 (4.3%)
200+ 10 (21.7%)
Dedicated whole time equivalent (WTE) therapists
Less than 1.0 WTE 24 (52.2%)
1 9 (19.6)
2 8 (17.4%)
3 4 (8.7%)
4 0
5 0
More than 5 1 (2.2%)
provided surgery only (n = 13), radiotherapy only (n = 7) or both
(n = 17). In addition, 6/46 teams responded that provide care in
centres where patients are diagnosed or receive long-term fol-
low-up but where no surgical or radiation oncology takes place,
including a local community support team. One cancer centre also
reported having a multidisciplinary head and neck community
team attached to their service including SLTs.
Referral, assessment and pre-treatment intervention
A majority of the teams (71.4% 30/42) reported receiving
referrals prior to oncological treatment. In addition, 35.7% of teams
(n = 15) received referrals as required during the on-treat
phase and 40.5% (n = 17) received referrals post-treatment. Of the
18 teams who did not work in radiotherapy centres, only one re-
ported that their patients were not seen by SLTs during or prior
to their treatment. A proportion of the respondents reported that
formal referral was not necessary and appropriate patients would
be identied at the weekly multidisciplinary head and neck clinics.
Patients were routinely seen pre-treatment in 50% (n = 21/42)
of cases. It was reported that 52.4% (n = 22) of the SLTs received
referrals from oncology teams even in the absence of any identied
oropharyngeal dysphagia given the potential effects of treatment
on swallowing. It was not specied whether these services rou-
tinely assessed all patients who were to undergo oncological treat-
ment or whether some selection/referral criteria were used.
On initial assessment a variety of evaluation tools were re-
ported. The most common assessment at this stage includes base-
line oromotor assessment (85.7%, n = 36/42), clinical dysphagia
assessment (90.5%, n = 38/42) and information provision on the po-
tential treatment effects on swallowing (97.6%, n = 41/42) and
communication ability (85.7%, n = 36/42). Instrumental evaluation
using Fibre Endoscopic Evaluation of Swallowing (FEES) or video-
uoroscopy formed part of an initial evaluation in only 16.7%
(n = 7/42) of centres. The survey did not elicit if this was a routine
examination or in response to suspected oropharyngeal dysphagia
in select individuals. Head and neck and swallowing related quality
of life questionnaires such as European Organisation for Research
and Treatment of Cancer Head and Neck 35 (EORTC H&N 35),10 Uni-
versity of Washington Quality of Life Scale11 and the M.D. Anderson
Dysphagia Inventory (MDADI)12 were administered in 9.5% (n = 4/
42) of teams as a baseline measure.
In order to establish which prophylactic swallowing exercises
and manoeuvres were administered, we provided a free-text
 J.W.G. Roe et al. / Oral Oncology 48 (2012) 343348
option for respondents. The majority of the teams who re-
sponded implemented programmes to address a range of poten-
tial swallowing impairments, although this was not always
consistent among respondents. Most commonly, treatment tar-
gets included the oral tongue (range of motion and resistance),
hyolaryngeal movement and upper oesophageal sphincter open-
ing and tongue base range of motion and strength (including the
effortful swallow13 and the gargle14) and pharyngeal constrictor
muscles (tongue-hold manoeuvre (Masako)).15 To a lesser extent,
programmes included neck stretching, exercises for facial mus-
cles, lips and mandibular range of motion and strength. In a lim-
ited number of cases, the supraglottic swallow (a voluntary
breath hold aiming to close the vocal folds before and during
the swallow) and/or the super-supraglottic swallow (an effortful
breath hold which aims to tilt the arytenoids forward thus clos-
ing the entrance to the airway before and during the swallow as
well as improving tongue base retraction in patients with nor-
mal anatomy) were implemented.14 From the responses, teams
implemented these swallow manoeuvres as prophylactic exer-
cises and by way of education should they need to be employed
at a later stage.
As well as describing prophylactic swallowing regimens, a num-
ber of respondents highlighted that tailored programmes were de-
signed for individuals presenting with specic swallowing
difculties. For example patients may already have swallowing
impairments requiring therapy secondary to their cancer or follow-
ing surgery. Exercises were also implemented to target specic
structures in the planned treatment elds. One team responded
that prophylactic exercise programmes were agreed at a regional
cancer network level to ensure consistency in service provision.
Specic protocols reported included the M.D. Anderson/University
of Texas swallowing exercise protocol16 and exercise protocols
were based on the available evidence, for example following re-
search carried out at the University of Alabama.7
There was variability in the recommended prescription of exer-
cises. The majority of therapists recommended exercises 5 times a
day (36.1%, n = 13/36), 3 times a day (19.4%, n = 7/36) or as often as
possible (25%, n = 9/36). Two teams recommended exercises twice
daily and one recommended only once a day.
Out of the 42 teams who responded, 83.3% (n = 35/42) have ac-
cess to videouoroscopy and 57.1% (n = 24/42) were able to access
FEES. Seven teams had no access to instrumental assessment. Of
those with access to videouoroscopy, the majority (53.7%,
n = 22/42) were able to evaluate up to three patients each week.
This increased to between 4 and 6 videouoroscopies for 24.4%
(n = 10/42) of teams and between 7 and 10 for one team. FEES
was generally less available with 14/42 teams (35%) reporting that
they could assess between 1 and 3 patients each week, 5/42
(12.5%) reporting that they could evaluate patients 46 times each
week, 2/42 teams performing between 7 and 10 examinations each
week and one service providing more than 10.
On-treat service provision
During treatment, 69% (n = 29/42) of the teams were actively in-
volved with patients. Of these teams, 25.6% (n = 10/42) saw pa-
tients weekly, 2.6% (n = 1/42) saw patients every other week with
the majority of the respondents seeing teams as required or on re-
quest (46.2%, n = 18/42). A number of teams (36.6%, n = 15/42) re-
ported seeing patients as part of a multidisciplinary on-treat
clinic. Eleven SLTs work in clinics involving a range of professionals
including nurses (n = 10/11), dietician (n = 9/11), doctor (Consul-
tant/SPR grade) (n = 5/11), radiographer (n = 2/11), dental hygien-
ist (n = 1/11), physiotherapist (n = 1/11) and a counsellor (n = 1/
11). Where doctors do not routinely attend clinics, they are avail-
able on request (2/11). A further four teams reported meeting
345
regularly to discuss patients in the absence of a dedicated clinic.
One team was unable to be involved in an active allied health pro-
fessional (AHP)-led clinic due to limited resources.
Standardised documentation of changes in swallowing ability
was variable with only 24.4% (n = 10/31) SLTs using specic mea-
sures such as the Performance Status Scale for Head and Neck Cancer
Patients (PSS-HN),17 the Functional Intraoral Glasgow Scale,18 the
Brisbane Hospital Outcome Measure of Swallowing Outcome19 and
the Functional Oral Intake Scale (FOIS).20 One centre reported that
they were due to commence measurement using the SWAL-QOL21
and Therapy Outcome Measures (TOMS).22
Post-treatment care and follow-up
Following treatment, radiotherapy patients appear to be fol-
lowed-up at the cancer centre (80.5%, n = 33/41) in a majority of
cases. When specifying SLT follow-up arrangements, patients were
either transferred back to the referring centre (35%, n = 7/20), to
community based SLTs (30%, n = 6) or other arrangements are
made (n = 2). While SLTs at some centres provide ongoing care,
those who provided further details reported seeing patients for a
period of 24 weeks post-treatment before referring back to their
diagnosing centre. It was also specied that if patients were on a
palliative care pathway, they would be referred back to more local
service provision. SLTs also reported that they often would provide
ongoing care in the absence of local services. One team provides a
return to feeding group for those making the transition to oral
feeding.
We wanted to know how long patients were encouraged to con-
tinue with swallowing exercises on completion of treatment. Most
teams recommended that they should continue as an ongoing
maintenance programme (42.5%, n = 17/40) and 30% (n = 12) rec-
ommended continuing exercises until swallowing difculties have
resolved. Responses then varied with one team (2.5%) recommend-
ing continuing up to 3 months, eight (20%) recommending up to
6 months and two (5%) recommending up to 12 months post-
treatment.
Additional themes
We invited teams to provide additional information which they
felt would increase our understanding of how services are pro-
vided. SLTs reported positive feedback had been received from pa-
tients and oncologists where dedicated services are provided.
However, resources were cited as being of concern, especially
where funding for posts was for a trial period only and where there
were inadequate resources to provide the level of service required
for patients. It was also reported that in some services, head and
neck surgical patients had to be prioritised over those receiving
radiotherapy. Where pre- and on-treatment services were not pro-
vided, patients were often referred at varying times post-treat-
ment. This was reported to result in limited resources being
targeted at the consequences of treatment rather than proactive
management to minimise potential complications. However, it
was reported that there had been an increase in stafng in certain
centres recognising the importance of SLT input to patients receiv-
ing radiotherapy.
Another reported concern was the variability in timing and
placement of feeding tubes. In many centres there was an absence
of a coherent and consistent policy on this matter. SLT services de-
scribed cases where some patients may have a tube placed pre-
treatment and not use it whereas those who might benet struggle
during their treatment without nutrition. Where appropriate, pa-
tients are actively encouraged to carry on with oral intake even if
they have prophylactic feeding tube placed. This issue has been
the topic of a recent national survey.23
346 J.W.G. Roe et al. / Oral Oncology 48 (2012) 343348

Many respondents highlighted the need for an improved evi-
dence base for prophylactic swallowing exercises and management
of patients with signicant aspiration in the absence of any chest-
related symptoms.
Discussion
swallowing difculties can limit the persons ability to participate
in the occupational and social situations they may have done prior
to their diagnosis. Timely evaluation and tailored swallowing reha-
bilitation programmes in partnership with the MDT can ensure
that improving oncological treatment techniques are harmonised
with minimising toxicity complications.

Our study highlighted the considerable variability in service Conict of interest statement
provision to patients undergoing radiotherapy for head and neck
cancer in the UK. Despite emerging evidence, expert opinion and No actual or potential conicts of interest exist among the
national guidelines regarding pre-treatment involvement with authors.
patients receiving radiotherapy, initial point of contact varies
as do initial assessment methods. The implementation, timing Acknowledgements
and duration of swallowing exercise programmes also differ
across centres. This is most likely due to the fact that, in spite Justin Roe is funded by a grant from the Oracle Cancer Research
of expert opinion, this is still an area where evidence on the ef- Trust. This work was undertaken in The Royal Marsden NHS Foun-
fects of swallowing exercise programmes is developing.9 In addi- dation Trust who received a proportion of its funding from the NHS
tion, it remains unclear as to how to identify those patients who Executive; the views expressed in this publication are those of the
might develop swallowing problems due to late oncological authors and not necessarily those of the NHS Executive. This work
treatment effects and motivating patients to continue with was supported by the Institute of Cancer Research, and Cancer Re-
maintenance programmes in these circumstances can be dif- search UK Section of Radiotherapy [CRUK Grant number C46/
cult.24 When specied, responses demonstrated that SLTs ac- A10588]. We acknowledge NHS funding to the NIHR Biomedical
tively base their pre-treatment intervention on the available Research Centre.
evidence and patient need.
Collaborative working within on-treat clinics is variable as is ac- Appendix A. Survey
cess to instrumental assessments such as videouoroscopy and
FEES. It has been highlighted in the literature that swallowing eval- 1. Is your facility in
uation may not reveal important issues such as silent aspiration
unless instrumental assessment is used.25 An issue that was high-  England
lighted by a number of respondents related to funding and re-  Scotland
sources. The perception of SLTs is that their services are valued  Wales
by patients and oncology teams. A number of centres reported that  Northern Ireland
they felt their services were limited or focussed on managing post-
treatment complications rather than proactive minimisation of 2. Approximately how many new head and neck referrals does
treatment effects. Detailed assessment of baseline swallowing your speech and language therapy (SLT) service receive each year?
function, ideally with instrumental assessment, given the potential
for sub-clinical swallowing abnormalities such as silent aspiration,  050
is a vital component of treatment preparation given that patients  50100
may present with swallowing difculties before radiotherapy.26  100150
A variety of measures are used to record patient progress during  150200
and following treatment. It would be benecial to the SLT profes-  200+
sion and radiation oncologists involved in clinical trials if outcome
measures were harmonised so that multicentre collaborations 3. How many dedicated whole time equivalent (WTE) SLTs do
could be developed to provide more detailed information regard- you have for head and neck cancer patients (to the nearest whole
ing swallowing outcomes. This is particularly relevant in light of number)?
the ongoing development of more targeted (chemo-)radiotherapy
techniques where data on long-term swallowing outcomes are  Less than 1.0 WTE
limited.27  1
The acquisition of detailed pre-treatment swallowing data by  2
dysphagia specialist SLTs can yield several benets. For the patient,  3
it can allow for early identication of swallowing impairment and  4
inform prophylactic, on-treat and longer term rehabilitation plan-  5
ning. For the MDT, this information can be used to minimise on-  More than 5
treatment complications and potentially reduce admissions sec-
ondary to the consequences of swallowing impairment. This can 4. Please indicate the services your centre has available on site
also contribute to a more holistic treatment plan encompassing
optimal disease management and survivorship issues. For radiation  Surgery
oncologists involved in clinical trials, protocols can be written to in-  Radiotherapy
clude detailed swallowing evaluation and ensure that identied  Both
changes in swallowing function are appropriately attributed to
treatment effects and are not the result of pre-existing impairment. 5. When do you usually receive referrals for patients due to be
Oropharyngeal dysphagia continues to impact signicantly on treated with radiotherapy?
head and neck cancer patients both acutely and in the long term.
As well as the risk of developing aspiration pneumonia, problems  Prior to treatment
clearing pharyngeal stasis and signicant nutritional compromise,  As required on treat
 J.W.G. Roe et al. / Oral Oncology 48 (2012) 343348 347

 As required post-treatment  FEES

 Not applicable  Neither

6. If your centre does not provide radiotherapy, do patients have 14. How many patients can you evaluate each week using
access to SLT during their treatment? videouoroscopy?

 Yes  13
 No  46
 Do not know  710
 Not applicable  More than 10
 Not applicable
7. Do you routinely see radiotherapy patients pre-treatment?
15. How many patients can you evaluate each week using FEES?
 Yes
 13
 No
 46
 Not applicable
 710
 More than 10
8. Does the Head and Neck Oncology team refer patients to SLT
 Not applicable
pre-treatment even if they are not presenting with swallowing
difculties? 16. Do you see patients during the on-treat period?

 Yes  Yes
 No  No
 Not applicable
17. How often do you see patients during the on-treat period?
9. When you see patients for initial assessment, what is in-
cluded in your session?  Weekly
 Every other week
 Oromotor assessment  As required on treat
 Clinical swallowing assessment  Not applicable
 Instrumental swallowing assessment (videouoroscopy/FEES)
 QOL questionnaire (e.g. UW-QOL, EORTC 35 Head and Neck) 18. Do you see patients in a multidisciplinary on-treat clinic?
 Swallowing specic questionnaire (e.g. M.D. Anderson Dysphagia
Inventory)  Yes
 Information on possible effects on swallowing  No
 Information on possible effects on communication
 Not applicable Please enter the disciplines of MDT involved (free text option).

10. Do you routinely recommend prophylactic swallowing 19. Do you document specic changes in swallowing ability
exercises? during the on-treat period using specic measures (e.g. the Perfor-
mance Status Scale)?
 Yes
 No  Yes
 No
11. If you do recommend prophylactic swallowing exercises,
please provide details of which exercises you provide 20. Do you provide post-treatment services for all your radio-
therapy patients?
 Free text option only
 Yes
12. If you completed the previous question, how often do you  No
recommend exercises are completed?
21. If you answered no to the previous question or you refer
some patients on, where does SLT follow-up take place?
 1  daily
 2  daily  At the radiotherapy centre
 3  daily  At the referring centre
 4  daily  By community SLTs
 5  daily  No follow-up available
 As often as possible  Other (please specify below)
 Not applicable  Not applicable

13. Which instrumental assessments do you have available at 22. How long do you recommend patients continue with swal-
your centre for radiotherapy patients? lowing exercises after completion of treatment?

 Videouoroscopy  Until swallowing difculties resolve

 Up to 3 months post-treatment
348 J.W.G. Roe et al. / Oral Oncology 48 (2012) 343348
 Up to 6 months post-treatment
 Up to 12 months post-treatment
 Ongoing as a maintenance programme
23. Please add any additional comments or information that you
think would enhance our understanding of how swallowing dif-
culties are managed with patients undergoing radiotherapy for
head and neck cancer
 Free text option only
End of questionnaire.
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