AO Posters

1
Affects of Dysphagia and Gastrostomy Feeding on
Quality of Life for People with Motor Neurone
Disease L. Doylea K. McElligottb aDepartment of
Speech Language Therapy, bDepartment 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 span2. 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 post-gastrostomy 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 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 (n14) 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 RIG-QOL (a
questionnaire devised by the researchers to
examine changes in wellbeing relating to
gastrostomy feeding based on the format of the
SWAL-QOL).

• RESULTS
• Participants reported an array of swallowing
  difficulties including choking on food and liquid
  as well as problems chewing.
• At stage 1 (N14), all participants felt
  dysphagia had a moderate or significant impact on
  their QOL. At stage 3 (N4), 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 (N11), all reported being at least
  somewhat glad they had the feeding tube
  inserted while at stage 3 (N4) all participants
  were very glad that they had a gastrostomy.
• At stage 2 (N11), 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.

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)
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.
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