Practical Management Strategies for Dysphagia in MNDALS

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Practical Management Strategies for Dysphagia in
MND/ALS

• Julia Johnson
• Clinical Specialist
• Speech and Language Therapist,

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Kings MND care research team
Dr Cathy Ellis- Consultant Neurologist Madhav
Thambisetty-Research registrar Dr Dominic Pavoir-
Ward SpR
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Living with dysphagia
My muscles are weak . Im a bit like a chicken
There is much clearing of the throat and a
consistent problem with phlegm
Every meal is a nightmare
When I try to swallow tablets, the water goes
down making me choke but the tablet stays and
dissolves in my mouth. It tastes horrible!
I have to move the food around my mouth with my
finger
I Cant gargle any more
I feel like a vampire with overnight feeding
I am always hungry
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Kings Interventions In Dysphagia
K.I.N.D.

• Based on the ALS Severity Scale for Swallowing
• Hillel, Miller, Yorkston, Mcdonald, Norris,
  Konikow. ALS severity Scale. Journal of
  Neuroepidemiology 1989 8 142-150
• Yorkston, Miller and Strands book Management of
  Speech and Swallowing in degenerative disorders
  Pro.ed 1995
• Plus published research and expert opinion

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K.I.N.D.
NORMAL EATING HABITS

• 10 - Normal Swallow
• 9 - Only patient notices slight indicators such
  as food lodging in the recesses of the mouth or
  sticking in the throat

• Carry out baseline swallowing assessment
• 150ml timed water swallow test (Hughes and Wiles
  1996)
• Reassurance if anxiety present
• Discuss anatomy and physiology of swallowing and
  explain reasons for minor difficulties
• Introduce pleasure rating scale

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Early Eating Problems

• 8 - Complains of some swallowing difficulties
  maintains essentially a regular diet isolated
  choking episodes.
• 7 - Meal time has significantly increased and
  smaller bite sizes are necessary must
  concentrate on swallowing thin liquids.

• Refer to dietition for regular review and advice
  (MNDA nutrition guide.)
• Texture Modification i.e. soft food
  selections. Avoid mixed textures
• Smaller meals with extra snacks
• Refer to OT if assistance required with self
  feeding i.e. Adapted cups, plates, cutlery,
  mobile arm support
• Refer to physio teach assisted cough
• Posture advice sit upright, avoid tipping head
  back for eating /drink.
• Discuss choking management
• Consider video swallow now or later (Kidney
  2003)
• .

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Moderate Dysphagia Present

• 6 - Diet is limited primarily to soft foods
  requires some special meal preparation.
• 5 - Oral intake adequate nutrition limited
  primarily to liquefied diet adequate thin liquid
  intake usually a problem may force self to eat.
•  

• Introduce alternative feeding discussion (PEG,
  RIG/PRG)
• Trial chin tuck to assist airway protection
  (Bulow 2001)
• Trial liquid thickener and pre-thickened
  juices/milk.Use if tolerated (Whelan 2001)
• Give advice on swallowing medications i.e. liquid
  or syrups, tablet placed in spoon of puree.
• Liase with pharmacist re tablet crushing
• Try use a sour bolus (Logemann1995, Pelletier
  2003)
• Listen out for wet voice as a predictor of
  aspiration (Warms 2000, pulse oximetry Colodny
  2000)

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Severe Dysphagia

• Ideally an alternative form of feeding is in
  place by this stage (Miller 1999)
• Reinforce risk of aspiration, malnutrition,
  dehydration, asphyxiation.
• Review swallow safety regularly and advise on
  reducing oral intake and increasing parenteral
  feeds
• Suggest NG feeding if no gastrostomy
• Teach carers how to feed safely (Langmore 1998).
• Describe signs of chest infection
• In order to get prompt treatment.
• Be aware of increased risks of aspiration with
  respiratory difficulty/ N.I.V. (Morton 2002)
•       

• 4 - Patient unable to rely on oral intake alone
• Greater than 50 orally
• Uses or needs a tube to supplement
• High aspiration risk present
•     
• Loss of enjoyment of meals dreads mealtimes

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Severe Dysphagia

• 3 - Primary nutrition and hydration accomplished
  by tube
• Less than 50 orally
• Tube feeding with
• occasional oral intake

• Continue monitoring swallow and advise on safety
  of oral feeding alongside gastrostomy or
  Naso-gastric feeding.
• Use of tastes for pleasure
• Oral swabs for comfort
• Support family members and carers re impact on
  social life (Brotherton 2006, Ekberg 2002)
          

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Nil By Mouth

• 2 - Cannot safely manage any oral intake
• Swallows reflexively
• Secretions managed with aspirator and/or
  medications

• Constant review of saliva management with trials
  of different interventions i.e. Bo - Tox
  (Glickman 2001)
• Glycopyrronium vs Hyoscine (Back 2001)
• Oral hygiene. Beware oral candida etc. and higher
  risk of chest infections from dental decay/
  infections (Langmore 1998)

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Nil By Mouth

• 1. Aspiration of secretions
• Secretions cannot be managed non-invasively
• Rarely swallows.
•  

• Facilitating jaw opening/F.O.T.T (Davies1994)
• TheraBite (Provox UK).
• Saliva management (Boyce 2005)
• Use of portable suction machine
• Regular oral hygiene throughout the day and
  comfort mouth swabs

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TheraBite

• Atos Medical AB P.O. Box 183 SE-242 22 Hörby
  Sweden
• Telephone
• 46 415 198 00
• Fax
• 46 415 198 98
•  
• info_at_atosmedical.com
•  (general information)
•  
•    
•  
•     

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Pleasure from oral intake

• Visual analogue scale
• Please put an X on the line marking how much
  pleasure you now get from eating
• 
  I love eating
• 
  ?
• 
  ?
• I find
  eating a chore

10 cm line
Self feeding circle one 2 no help required 1
difficulty 0 require feeding
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Research

• An investigation into the pleasure derived from
  eating in patients with Motor Neurone Disease
  (MND) and analysis of whether this may be related
  to timely acceptance of non oral feeding options.

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Background

• 25 of MND patients have bulbar problems as the
  initial presentation of their disease process. Up
  to 80 of all MND patients may develop bulbar
  problems as the disease progresses.
• Bulbar deficits lead to dysphagia/ swallowing
  difficulties. As the disease progresses the
  swallowing problems put the patient at risk of
  malnutrition, dehydration, aspiration pneumonia
  (chest infections) and asphyxiation (food
  blocking the airway). These complications may
  cause or hasten a patient's death.

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Background

• When a patient's swallowing deteriorates to a
  level when it is deemed no longer safe to rely on
  oral intake alone they are advised to have a
  gastrostomy placed.
• Some patients are unable to accept alternatives
  to oral feeding even when assessments by the
  multi professional team in charge of their
  care indicate it would be appropriate.
• pleasure derived from eating may be one of the
  psychological factors affecting decision.

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Background

• Survival rates for patients who delay the
• decision of undergoing a percutaneous
• endoscopic gastrostomy (PEG) until they
• have respiratory difficulties are poor .
• 
  Forbes 2004

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Inclusion criteria

• Individuals with a confirmed diagnosis of MND and
  documented swallowing difficulties.
• Aged 18 years and over.
• Able to understand the explanation of the visual
  analogue scale
• Able to indicate either by pointing with finger
  or toe on scale
• If no upper or lower limb control then must be
  able to stop carer as they slide finger down
  scale.
• Reliable yes/ no response

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Exclusion Criteria

• Individuals with an unconfirmed diagnosis.
• Individuals who may not fully understand the
  V.A.S. instructions.
• Individuals with known cognitive
  impairments/dementia.
• Individuals with no upper limb function, no
  speech or no ability to reliably indicate a set
  point along the V.A.S. line.
• Children under 18 years .
• Anyone refusing to participate for any reason
  stated or not stated.

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Procedure

• People with MND are offered non-oral feeding
  supplementation, such as gastrostomy placement,
  when the swallowing ALS severity score reaches 6
  /10
• The date of the offer is recorded alongside the
  percentage pleasure they derive from eating.
• It was hypothesised that if the patient was
  still experiencing a high pleasure from oral
  intake they would turn down the offer of a
  gastrostomy.
• Offers continue to be made in line with standard
  clinic operating procedures and the date
  gastrostomy is accepted along with pleasure
  rating at that time is recorded.

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Pilot Group

• 24 patients consented to research so far from
  March 2005 September 2006
• 11 females 13 males
• Average age 60.95 range 40 - 87 years
• At the time of data analysis of first offer 6/10
  ALSSS
• 7 accepted gastrostomy and RIG placed
• 10 rejected

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Pleasure score at first offer of gastrostomy
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Pleasure derived from eating 0-100
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Ability to self feed at offer of gastrostomy
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Self-Feeding status in group who rejected
gastrostomy at first offer
n 10
Unable Difficulty Able
10 unable
60 self feeding
30 difficulty
Categorical data analysed with ?2
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Self feeding Status in the group who accepted
gastrostomy at first offer
n 7
Unable Able
57 Unable to self feed
43 Self feeding
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Assessment for PEG/RIG

• Involves co-ordinating the following regular
  assessments
• Assessment of swallowing by the speech language
  therapist
•  Assessment of nutritional status by the
  dietitian
•  Assessment of respiratory muscle weakness
•  
•    The patient is prepared for assessment
  discussion of possible interventions depending on
  their stage of disease and relation to
  respiratory muscle weakness PEG, RIG, NGT
•  
•         

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Kings MND Centre- Dec 2003Practical management
for maintaining nutrition

• Revisit topic periodically depending on swallow
  assessment, degree of weight loss, respiratory
  status, patient and family coping skills
  openness to intervention, etc
•  
• When the patient and family/carers are ready and
  in agreement an admission is planned ensuring the
  neurologist, outpatient clinic team, ward team
  and related departments such as radiology,
  gastro-intestinal team and respiratory team are
  co-ordinated along with relevant community
  services.
•  On admission the patients medical state is
  fully assessed to exclude other reasons why
  PEG/RIG may be contraindicated (e.g. previous GI
  surgery, Crohns disease, peptic ulceration,
  cardiac and respiratory disease). Patients with
  clotting disorders may need appropriate
  treatment/prophylaxis.

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The pleasure of eating
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The pleasure of eating - 2
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Sponsorships

• Toby Churchill Ltd Winchester, England who
  provide Lightwriter and other communication aids
  for people who cannot speak.
• Novartis - medical Nutrition Department
• Kings Development Award
• Statistics and graphs prepared by Dr Matt
  Morrissey
• Research lead therapist- KCH
• 
  Julia.johnson_at_kingsch.nhs.uk

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References Back I et al. A study comparing
hyoscine hydrobromide and glycopyrrolate in the
treatment of death rattle. 2001 Palliative
Medicine. 15 329336. Brotherton et al The
impact of percutaneous endoscopic gastrostomy
feeding upon daily life in adults. 2006 Journal
Hum Nutr Diet, 19 pp.335-367 Boyce HW, Bakheet
MR. Sialorrhea a review of a vexing, often
unrecognized sign of oropharyngeal and
esophageal disease. J Clin Gastroenterol. 2005
Feb39(2) Bulow, Olsson and Ekberg
Videomanometric Analysis of supraglottic swallow,
effortful swallow and chin tuck in patients with
pharyngeal dysfunction. Dysphagia 200115 Colodny
N. Comparison of dysphagics and non dysphagics on
pulse oximetry during oral feeding. Dysphagia
200015 (2) 68-73 Davies P Starting again Early
rehabilitation after traumatic brain injury or
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face and mouth. 1994 Springer Verlag. Ekberg,
Hamdy , Woisard , Wuttge-Hannig and Ortega .
Social and Psychological Burden of Dysphagia
Its Impact on Diagnosis and Treatment Dysphagia
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of gastrostomy tubes for ALS/MND. Journal of
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Mcdonald Norris, Konikow. ALS severity Scale.
Journal of Neuroepidemiology 1989 8 142-150
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