Transcript AO Posters

Affects of Dysphagia and Gastrostomy Feeding on
Quality of Life for People with Motor Neurone Disease
L.
aDepartment
a
Doyle
& K.
b
McElligott
bDepartment
of Speech & Language Therapy,
of Nutrition & Dietetics,
Beaumont Hospital, Dublin, Ireland
INTRODUCTION
Motor Neurone Disease (MND), is a fatal, progressive, neurodegenerative disease of unknown aetiology, characterised by death of both upper and lower motor neurones1.
Reduced oral intake frequently occurs in this patient group due to factors including dysphagia, poor appetite, extended meal times, reduced ability to self-feed, low mood
and changes in taste. This often leads to ‘weight loss, malnutrition and dehydration which may aggravate muscle weakness, contribute to respiratory weakness, and perhaps
shorten life span’2.
The EFNS Task Force3 recommend that people with MND should be referred to a dietitian as soon as dysphagia appears. Intervention by a Speech and Language Therapist is
also indicated to suggest alternative food/fluid consistencies and swallowing techniques. Initial nutritional interventions may include food fortification and nutritional
supplementation. Gastrostomy insertion is also a routinely considered management option for this patient group. While the evidence for prolonged survival postgastrostomy is weakly positive , a limited number of studies to date suggest that gastrostomy insertion has a possible positive effect on QOL4,5.
OBJECTIVE
To investigate to what extent dysphagia and gastrostomy feeding impacts on QOL for people with MND.
METHOD
RESULTS
Over an eighteen month period, people with MND who
were scheduled for gastrostomy insertion in Beaumont
Hospital completed a questionnaire at three stages.
Prior to tube insertion (stage 1), participants (n=14)
completed the SWAL-QOL, which is a validated
questionnaire regarding the effects of dysphagia on
QOL. This was repeated at approximately six weeks
(stage 2) and six months (stage 3) following insertion.
At stages 2 and 3, participants also completed the RIGQOL (a questionnaire devised by the researchers to
examine changes in wellbeing relating to gastrostomy
feeding based on the format of the SWAL-QOL).
• Participants reported an array of swallowing difficulties including choking on food and liquid as well as
problems chewing.
• At stage 1 (N=14), all participants felt dysphagia had a moderate or significant impact on their QOL. At
stage 3 (N=4), all stated that dysphagia had a significant impact on their wellbeing and daily life.
• All participants felt adequately involved in the decision to have a feeding tube inserted with 82%
stating that this was ‘very much true’.
• At stage 2 (N=11), all reported being at least ‘somewhat’ glad they had the feeding tube inserted while
at stage 3 (N=4) all participants were ‘very’ glad that they had a gastrostomy.
• At stage 2 (N=11), the main reported complications of gastrostomy tube feeding were reflux post-feeds
and soreness around the stoma site, although only 1 participant reported that this was ‘almost always’
an issue.
• All participants reported a better sense of wellbeing following gastrostomy insertion.
Frequency of Swallowing Problems Experienced
over the Last Month (Stage 1)
9
9
8
7
6
5
4
3
2
1
0
Choking when
taking foods
8
8
No. of Participants
No. of Participants
‘Considering all aspects of your health,
overall how much of an impact does your
swallowing difficulty have on your
wellbeing and daily life?’ (Stage 1)
7 7
7
6
Choking when
taking liquids
6
5
4
3
4
3
22 2
3
22
Mild
impact
2
11
0
1
0 0
Coughing
0
Moderate Significant Hugely
impact
impact significant
impact
‘I am glad I had my feeding tube inserted’
(Stage 2)
Problems
chewing
2
1
No impact
3
Almost
always
Often
Sometimes Hardly
Ever
Never
Symptoms
Sense of Wellbeing since Feeding Tube Inserted
(Stage 2)
6
I have a better sense of
wellbeing since having
my feeding tube
inserted'
No. of Participants
5
4
3
I feel that tube feeding
gives a boost to my
energy levels'
2
1
0
Very much Quite a bit Somewhat A little
true
true
true
true
Not at all
true
REFERENCES
1. Karitzky J, Ludolph AC. Imaging and neurochemical markers for diagnosis and disease progression in ALS. Journal of the Neurological Sciences 2001;191(1-2):35–41.
2. Katzberg HD & Benatar M. Enteral tube feeding for amyotrophic lateral sclerosis. Cochrane Database Systematic Review, 2011;(1):CD004030.
3. Anderson PM Abrahams S, Borasio GD, De Carvalho M, Chio A, Van Damme P, Hardiman O, Kollewe K, Morrison KE, Petri S, Pradat PF, Silani V, Tomik B, Wasner M & Weber M. EFNS
guidelines on the clinical management of Amyotrophic Lateral Sclerosis (MALS) – revised report of an ENFS task force. European Journal of Neurology. 2012;19(3);360-375.
4. Mazzini L, Corra T, Zaccala M, Mora G, Del Piano M, Galante M. Percutaneous endoscopic gastrostomy and enteral nutrition in amyotrophic later sclerosis. J Neurol 1995;242:695-8.
5. Mitsumoto H, Davidson M, Moore D, Gad N, Brandis M, Ringel S et al. Percutaneous endoscopic gastrostomy (PEG) in patients with ALS and bulbar dysfunction. Amyotrophic Lateral
Sclerosis and Other Motor Neurone Disorders 2003;4(3):177-85.
DISCUSSION/CONCLUSIONS
Dysphagia and malnutrition are factors which can negatively
affect prognosis and QOL for people with MND. Changes in
swallowing function and reduced oral intake can often be a
significant source of fear and anxiety for both the person and
their carers. In this study, all participants felt that their
dysphagia had a negative impact on their QOL.
While gastrostomy insertion may not significantly lengthen life
expectancy for this patient group, it may have a positive impact
on QOL. In addition to providing nutrition, gastrostomy tubes
allow people with MND to continue taking medications and
adequate fluids when it is no longer possible to do so orally.
The current researchers acknowledge that due to the
progressive nature of MND, it can be challenging to measure
QOL concerning just one aspect of the condition. However,
while the numbers in this study were small, this data indicates
that people with MND who received gastrostomy feeding were
glad they had a feeding tube inserted and felt some level of
improved wellbeing.
At stage 3 compared to stage 2, all remaining participants
stated more strongly that they were glad they had a
gastrostomy tube inserted. It may be that as the condition
progresses, the benefits of a gastrostomy tube become more
apparent to people with MND.
More research is needed in this area to further examine the
affects of gastrostomy feeding on QOL for people with MND
across a larger group of participants.