Practical Management

Strategies for

Dysphagia in

MND/ALS

Julia Johnson

Clinical Specialist

Speech and Language Therapist,

Administration

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Living with dysphagia

I Can’t gargle

any more

Every mealis a nightmare

My muscles

are weak .

I’m a bit like a chicken

I feel like avampire with

overnight feeding

There is much

clearing of

the throat and a

consistent problem

with phlegm

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 am always

hungry

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 Strand’s book ‘Management of Speech and Swallowing in degenerative disorders’ Pro.ed 1995

Plus published research and expert opinion

K.I.N.D.

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

NORMAL EATING HABITS

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)

.

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)

Severe Dysphagia

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’

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)

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)

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. Bewareoral candida etc. and higher risk of chest infections from dental decay/ infections (Langmore 1998)

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 suctionmachine

Regular oral hygiene throughout the day and comfort mouth swabs

TheraBite

Atos Medical AB P.O. Box 183 SE-242 22 Hörby Sweden

Telephone

+46 415 198 00

Fax

46 415 198 98

info@atosmedical.com

(general information)

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

Self feeding: circle one

2 no help required

1 difficulty

0 require feeding

10 cm line

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.

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.

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.

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

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

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.

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.

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

Pleasure score at first offer of gastrostomy

0.019P-value

100%75%Maximum

30%0Minimum

21%30%Standard deviation

75%43%mean

107n

REJECT OFFERACCEPT OFFERSTATISTIC

Pleasure derived from eating 0-100%

10

Group

100

80

60

40

20

0

Mea

n P

leas

ure

Error bars: +/- 1 SD

Ability to self feed at offer of gastrostomy

6 (60%)3 (43%)Able to self feed (n)

0.066χ2

1 (10%)4 (57%)Unable to self feed

3 (30%)0Difficulty with self feeding (n)

Reject OfferAccept OfferStatistic

Self-Feeding status in group who rejected gastrostomy at first offer

2.00

1.00

.00

SelfFeed

n = 10Unable

DifficultyAble

Categorical data

analysed with χ2

60%

self feeding

30%

difficulty

10%

unable

Self feeding Status in the group who accepted gastrostomy at first offer

2.00

.00

SelfFeed

n = 7

Unable

Able

57%

Unable

to self

feed

43%

Self feeding

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

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 patient’s medical state is fully assessed to exclude other reasons why PEG/RIG may be contraindicated (e.g. previous GI surgery, Crohn’s disease, peptic ulceration, cardiac and respiratory disease). Patients with clotting disorders may need appropriate treatment/prophylaxis.

The pleasure of eating

The pleasure of eating - 2

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@kingsch.nhs.uk

ReferencesBack I et al. A study comparing hyoscine hydrobromide and glycopyrrolate in the treatment of death rattle. 2001 Palliative Medicine. 15: 329–336.Brotherton et al The impact of percutaneous endoscopic gastrostomy feeding upondaily life in adults. 2006 Journal Hum Nutr Diet, 19 pp.335-367Boyce HW, Bakheet MR. Sialorrhea: a review of a vexing, often unrecognized sign of oropharyngeal and esophageal disease. J Clin Gastroenterol. 2005 Feb;39(2):Bulow, Olsson and Ekberg Videomanometric Analysis of supraglottic swallow, effortfulswallow and chin tuck in patients with pharyngeal dysfunction. Dysphagia 2001;15Colodny N. Comparison of dysphagics and non dysphagics on pulse oximetry duringoral feeding. Dysphagia 2000;15 (2) 68-73Davies P Starting again: Early rehabilitation after traumatic brain injury or other severebrain lesion. Ch 5 - Reanimating the face and mouth. 1994 Springer Verlag.Ekberg, Hamdy , Woisard , Wuttge-Hannig and Ortega . Social and PsychologicalBurden of Dysphagia : Its Impact on Diagnosis and Treatment Dysphagia 2002Forbes,R.B.. Frequency, timing and outcome of gastrostomy tubes for ALS/MND.Journal of Neurology (2004) 251:813-817Giess, R 1; Naumann, M 1; Werner, E 2; et al Injections of botulinum toxin A into thesalivary glands improve sialorrhoea in amyotrophic lateral sclerosis. J.N.N.P.69(1):121Glickman S.and Deaney C. Treatment of relative sialorrhoea with botulinum toxin typeA. European Journal of Neurology;2001. 8 567-571Hadjikoutis, Eccles and Wiles. Coughing and Choking in Motor Neurone Disease.JNNP 2000;68:601-604

Hillel, Miller, Yorkston, Mcdonald Norris, Konikow. ALS severity Scale. Journal of

Neuroepidemiology 1989 8: 142-150

Hughes and Wiles. Clinical Measurement of Swallowing in Health and in NeurogenicDysphagia. Q J Med 1996.89 109-116Kidney, D., Harney, M; Alexander, M. D., Patil, N., Walsh, P., Hardiman, O. Assessing dysphagia in motor neuron disease.European Journal Neurology.Sept 2003Langmore et al. Predictors of aspiration pneumonia: How important is dysphagia ? Dysphagia 1998;13:69-81Leigh et al. The Management of Motor Neurone Disease. JNNP 2003;74:32-37Logemann J.A. et al. Effects of a sour bolus on oropharyngeal swallowing measures in patients with neurogenic dysphagia. Journal of Speech and Hearing Research;1995: 38Miller et al Practice parameter: The care of the patient with ALS (an evidence based review) Neurology 1999:52 1311-1323Morton,R, Minford, J, Ellis, R et al Aspiration and Dysphagia: the Interaction between oropharyngeal and respiratory impairments. 2002 Dysphagia 17Pelletier C.A., Lawless H.T. Effect of citric acid-sucrose mixtures on swallowing inneurogenic oropharyngeal dysphagia. Dysphagia 2003; 18: 231-241Rio A, Ampong M, Johnson J, Willey E, Leigh N, Nutritional care of patients with motor neurone disease. British Journal of Neuroscience Nursing April 2005 Vol1 No1Strand ,Miller ,Yorkston, Allen and Hillel. Management of Oral-Pharyngeal Dysphagia Symptoms in ALS. Dysphagia 1996. 11 129-139Shaw A.S., Ampong M., Rio A.,. et al. Entristar Skin Level Gastrostomy Tube: Primary Placement with Radiologic Guidance in patients with ALS. 2004 RadiologyWarms T, Richards J. Wet voice as a predictor of penetration and aspiration in oropharyngeal dysphagia. Dysphagia 2000 15 (2) 84-88 Whelan. Inadequate fluid intakes in dysphagic acute stroke. Clinical nutrition 2001;20(5)