Managing Nutrition in the Community

Jo Wheeler

Head of Nutrition & Dietetics

HEN Dietitian

Nutrition in MND

• What do we know?

• What affects nutritional intake?

• What can help?

• What resources can we use?

• What we changed locally

• Case studies

What do we know?

• People present and get diagnosed at different stages

• 16-55% of people with MND are malnourished

• Nutritional status is a predictor of survival in MND

• Causes & consequences of malnutrition are multi-factorial

• Nutritional intervention isn’t always wanted (complex decision making)

• Progression of symptoms varies between patients

• Alternative feeding methods aren’t always possible

• Management of nutritional status throughout disease progression is important to enhancing the quality of life

What affects nutritional intake…

• Appetite/Thirst

• Dysphagia

• Respiratory Insufficiency

• Constipation

• Difficulty with self feeding/meal preparation

• Nausea

• Hypermetabolism

• Anxiety

• Depression

• Cognitive impairment

• Fatigue

Consequences of malnutrition/weight loss…

• ↑ respiratory muscle weakness

• ↑ muscle wasting

• ↓ reduced physical strength & mobility

• Impaired immune function

• ↑ risk of pressure sores

• ↑ discomfort sitting/lying – less padding

• ↓ morale and quality of life

What can help…..

What can help?

Early identification

&

Early intervention

Patients Association - Nutrition Checklist

November 2015 - Policy - Practice - Patient views

2016 - Research - Scope for

checklist - Various

settings

Aim - Encourage

conversations - Guidance to

tools and resources

- Joint working - 3 easy sections

Self screening

Community Resources

Optimising Nutrition at every stage Ask…

• Normal/usual diet

• Weight history

• Shopping/cooking

• Likes/dislikes

• Swallowing difficulties

Advise…

• Balanced diet & weight maintenance (or gain if required)

Optimising Nutrition at every stage

Ask…

• Normal/usual diet

• Weight history

• Shopping/cooking

• Likes/dislikes

• Swallowing difficulties

Advise…

• Balanced diet

• Strategies to help – equipment, positioning,

Independence aids

Optimising Nutrition at every stage

Ask…

• Normal/usual diet

• Weight history

• Shopping/cooking

• Likes/dislikes

• Swallowing difficulties

Advise…

• Balanced diet

• Strategies to help – equipment, positioning,

• Food fortification/texture modification

• Memory prompts

• Nutritional supplements

MND MDT

From Hospital to Home

Optimise care- Facilitate Communication –Improve quality of care

• Everyone involved in asking the questions

• Identify any problems early

• Build rapport

• Meet monthly and easy communication between members

• One dietetic team across acute and community

When oral intake isn’t enough….

What we did well…

• Artificial nutrition discussions – early but individual to patient needs

What we didn’t do so well…

• Managing patient expectations

• Fully assessing all risk factors could affect tube placement (gastrostomy)

Resources

• Leaflets – local development & with

Parenteral & Enteral Nutrition Group (PENG)

http://www.peng.org.uk/publications-resources/resources-for-patients-hcps.php

Resources

• Leaflets – local development & with Parenteral & Enteral Nutrition Group (PENG)

• Videos – local development & myTube

www.mytube.mymnd.org.uk

Resources

• Leaflets – local development & with Parenteral & Enteral Nutrition Group (PENG)

• Videos – local development & MNDA

• PEG referral form/pathway

PEG referral form/pathway

Resources

• Time • Questions & opportunity to see tubes at home and

consider who will care for the tube • Plan prior to tube placement – fluids &/or medications

&/or feed (bolus/pump) • Arrange training for patients/carers /care agencies • Visit on ward • Arrange community nurse visit on day of procedure • Dietitian contact next day and visit within 5 days to

offer ongoing support and feeding advice as condition progresses

Goals of artificial nutrition

• Realistic

• Patient centred

• Balance between optimising nutrition & symptom management

• Quality of Life

Have to consider the impact on patients

Case study 1 John - 71 yr old man

Diagnosed 2010 – 83Kg

Initial visit August – 81.4Kg

PEG inserted at Kings November 2010 – 75.3Kg

June 2011 unsafe swallow→full feeds – 71.1kg

2013-2014 weight steady between 64.3Kg-67Kg

September 2015 – buried bumper, difficulty feeding/flushing. November appointment.

Admitted & had NG tube inserted → home for end of life care

6 NG tubes later….

Case study 2

Bet -75 yr old lady

Admitted 10/2/17 (42Kg BMI 18)

2 stone weight loss in 1 year (23%), puree diet

NGT → RIG 24/2/17, modified diet (46.9Kg)

Discharge delays

Pump →Bolus → Gravity → Pump (6 hr window)

Care package set up – nobody willing to do balloon water change

Discharged 18/4/17 (46Kg, BMI 20)

Now: NBM, 42.7Kg, symptom management issues

BUT Bet is at home, near the friends she loves and is HAPPY

Summary

• Malnutrition is common • Management of nutrition requires a continual

assessment throughout the duration of the disease • MDT working is essential • Reflect and review local pathways/processes to

improve quality of patient experience & care

Food is an emotive part of our lives, bringing us comfort and pleasure. It’s one of the ways that we show how we

care for one another

Being nourished is not just about calories – for most of us, the enjoyment of food and flavour is incredibly important

to quality of life.

Knowing and understanding the importance of this for each patient will help us to offer the most appropriate

support with decisions about nutritional care

References

1. Desport JC, Pruex PM, Truong TC, Vallat JM, Sautereau D & Coutalier P. Nutritional Status is a prognostic factor for survival in ALS patients. Neurology 1999; 53: 1059-63

2. Greenaway LP, Martin NH, Lawrence V, Janssen A, Al-Chalabi A, Leigh P N, Goldstein LH. Accepting or declining non-invasive ventilation or gastrostomy in amytrophic lateral sclerosis: patient’s perspectives. Journal of neurology; 2015; vol262 (no. 4); p 1002-1013

3. Stavroulakis T, Baird WO, Baxter SK, Walsh T, Shaw PJ, McDermott CJ. The impact of gastrostomy in motor neurone disease: challenges and benefits from a patient and carer perspective. BMJ supportive & palliative care; Mar 2016; vol. 6 (no. 1); p 52-59

4. Heffernan C, Jenkinson C, Holmes T, Feder G, Kupfer R, Leigh N, McGowan S, Rio A, Sidhu P. Nutritional management in MND/ALS patients: an evidence based review. ALS and other motor neuron disorders; 2004; 5; 72-83

5. Silani V, Kasarskis E & Yanagisawa N. Nutritional Management in ALS: a worldwide perspective. Journal of Neurology 1998; vol 245, no. Supplement 2, p. S13-S19

6. Zhang L, Sanders L, Fraser RJ. World Journal of Gastroenterology 2012; vol 18 (no 44); p6461

7. Johnson J, Leigh PN, Shaw CE, Ellis C, Burman R, Al-Chalabi, A. ALS:official publication of the World Federation of Neurology Research Group on Motor Neuron Diseases; 2012; vol13 (no 6); p 555-559

8. Brotherton A, Abbott J & Aggett P. The impact of of percutaneous endoscopic gastrostomy feeding upon quality of life in adults . J. Hum. Nutr. Diet. 19, 355-367