D McClurg, C Norton & J Lodge - Bladder and bowel management

1. 9.00-9.10 Introductions. Why we are mainly concentrating on
bowel, incidence etc
9.10-9.30 Bowel dysfunction and MS, anatomy/physiology,
possible causes, impact,
9.30 to 9.50 Treatment pathway, diet, exercise, medication, rectal
irrigation,
9.50 to 10.10 Where does abdominal massage fit in to this, +
short video clips
10.10-10.20 What do people with MS want their bowel services
to be
10.20 – 10.30 Questions/case studies

2. Aims
To provide an overview of MS and Bowel Dysfunction
Learning Outcomes
1. Increase knowledge on the causes of bowel dysfunction and
people with MS
2. Increase awareness of impact on PwMS and family
3. Improve ability to discuss such symptoms with PwMS
4. Identify strategies where you can provide help and support, and
how and when to refer on

3. The elephant in the room
Neurogenic bowel dysfunction
Doreen.mcclurg@gcu.ac.uk

5. The facts are Emily did not have the treatment she
needed and a 16-year-old girl should not die of
constipation
It accused experts of not listening properly to Emily,
meaning "the voice of the child was not heard or
accessible" and no professional knew what Emily
herself "thought would help her most in life".
The mother of a man who died from complications
related to constipation told an inquest his death was
"wholly preventable". Richard Handley, who had
Down's syndrome, died at Ipswich Hospital on 17
November 2012. Some 10kg (1.5 stone) of faeces was
removed from his body two days before.
it’s difficult to aggregate smaller
failures by different agencies at
different times to make one gross
failure; there were undoubtedly
failures at different times

6. Multiple Sclerosis
• Bowel dysfunction is common in people
with multiple sclerosis (PwMS) about two-
thirds.
• Current treatment options are limited,
poorly evaluated and complex.
• An April 2017 report identified that
emergency admissions (many preventable)
to hospital for PwMS has increased by
12.7% over the two years 2015/16, with
overall admissions for bladder and bowel
related issues costing £10.4m in 2015/16

7. Causes of Bowel Dysfunction in
People with MS
• Childbirth
• Decreased mobility
• Polypharmacy
• Decreased rectal sensation
• Defaecation dynamics
• Pelvic floor dyssnergia
• Decreased colonic transit time
• Decreased abdominal pressure
• Fluid intake
• Diet

8. Dibley L, Coggrave M, McClurg D, Woodward S, Norton. ‘It’s just horrible’: a qualitative study of patients and carers’
experiences of bowel dysfunction in multiple sclerosis. 2017 Journal of Neurology 265(7), pp 1354-1361
• Loss of rectal sensation – not knowing when rectum full, not knowing when it’s empty
• Constipation and faecal impaction
• Diarrhoea
• Constipation and diarrhoea (overflow?)
• Faecal urgency
• Faecal incontinence
• Incomplete evacuation
• Evacuation difficulty
• Abdominal pain
• Abdominal bloating and flatulence – flatus incontinence, sitting is painful
• Prolonged toileting
• Loss of appetite – weight loss
BUT
• Psychologically, Socially, Relationships
How do PwMS experience bowel dysfunction
physically

9. Causes of bowel problems in
MS
Christine Norton PhD MA RN
Professor of Nursing
King’s College London

14. Anorectal sensation and
sphincter function
• Every 10 minutes rectal distension leads to
relaxation of upper internal anal sphincter (IAS)
• Rectal contents are exposed to anal mucosa
(~10secs); incontinence does not occur due to
recruitment of external sphincter activity
• Higher slow wave activity in lower IAS pushes
contents back into rectum
• All usually occurs at sub-conscious level
• Normal 3x day to 3x per week
• Complete (effortless) evacuation at a predictable
time

15. What goes wrong in MS?
• Sensation
• Motor function & ability to push
• Mobility (slower peristalsis)
• Medications (hard or loose stool)
• Carers (availability)
• Anxiety (vicious circle)
• Plus same things as in non-MS people:
childbirth, thyroid, prolapse, haemorrhoids,
diet, cognition, etc etc….
• It’s not all MS!!

16. MS bowel issues (may be both)
• Constipation
– Slow colonic transit
– Evacuation difficulty, dyssynergia
– (or both)
• Faecal incontinence / urgency
– Weak sphincter
– Incomplete evacuation
– Impaction
– Laxatives
– Anxiety

17. HIGH RESOLUTION ANO-RECTAL MANOMETRY
(HRaM)
• Pressure displayed as a colour
contour plot
• Pressure magnitude indicated
by colour intensity
• ‘Cooler’ colours (blues)
represent lower pressures
• ‘Warmer’ colours (yellows to
reds) represent higher
pressures

18. HR Ano-Rectal manometry– Baseline pressures
6cm from
anal verge
5cm
4cm
3cm
2cm
1cm
Anal verge
Atmospheric
Excellent squeeze pressures
Good resting
sphincter tone
Normal resting tone and squeeze pressures.
Balloon channel

19. HR Ano-Rectal manometry – recto-anal inhibitory reflex
6cm from
anal verge
5cm
4cm
3cm
2cm
1cm
Anal verge
Atmospheric
Normal recto-anal inhibitory reflex response
To 60ml distension
Good resting
sphincter tone
Normal recto-anal inhibitory reflex.
Balloon channel
Intra-balloon
pressure

20. HR Ano-Rectal manometry - Dyssynergia
6cm from
anal verge
5cm
4cm
3cm
2cm
1cm
Anal verge
Atmospheric
Large increase in both intra-rectal and
sphinteric pressure when bearing downGood resting
sphincter tone
High pressure rises in the rectum and anal canal when patient performs
usual ‘bearing down’ behaviour. Once encouraged to push more gently
partial sphincter relaxation is seen
Patient asked to bear down
more gently resulting in lower
intra-rectal pressure and
partial relaxation of the
sphincter

21. High Resolution Ano-Rectal manometry – no propulsive force
Ineffective evacuatory force generated when asked to bear down
Patient asked to bear
down but did not generate
an increase in rectal
pressure or partial
relaxation of the sphincter
6cm from
anal verge
5cm
4cm
3cm
2cm
1cm
Anal verge
Atmospheric
Balloon channel
Reasonable resting
sphincter tone

22. HR Ano-Rectal manometry – improved propulsive force
Image shows effective evacuatory force generated when asked to push
down post biofeedback sessions
Patient asked to bear
down and was able to
increase intra-rectal
pressure and induce
complete relaxation of the
anal sphincter
6cm from
anal verge
5cm
4cm
3cm
2cm
1cm
Anal verge
Atmospheric
Balloon channel
Good resting
sphincter tone

23. High Resolution Ano-Rectal manometry – recto-anal inhibitory reflex.
6cm from
anal verge
5cm
4cm
3cm
2cm
1cm
Anal verge
Atmospheric
Negative RAIR
Recto-anal inhibitory reflex in a hyposensate patient.
Balloon channel
60ml 120ml
‘Partial’ RAIR
180ml
‘Sustained’ RAIR

24. High Resolution Ano-Rectal manometry – Baseline rest and squeeze pressures
6cm from
anal verge
5cm
4cm
3cm
2cm
1cm
Anal verge
Atmospheric
Very poor squeeze pressures
Low resting
sphincter tone and short
anal canal
Low resting tone and poor squeeze pressures at the baseline visit prior
to biofeedback sessions.
Balloon channel

25. High Resolution Ano-Rectal manometry – after biofeedback
6cm from
anal verge
5cm
4cm
3cm
2cm
1cm
Anal verge
Atmospheric
Long duration, normal amplitude squeeze pressures at the end of the
session showing marked improvement in the ability to perform voluntary
squeezes.
Good resting sphincter tone
Normal resting tone and excellent squeeze pressure well within the
normal range. The patient has been asked to repeat these exercises 3 x
per day for the next week.

26. A lot can go wrong!
• Start with the simple things: history and
examination
• Specialised tests not always needed, but
are available where you are struggling
• Don’t assume everything is due to MS:
these problems are common anyway
• Need to proactively ask as many people
do not reveal problems spontaneously

27. J E N L O D G E
C N S B O W E L H E A L T H A N D P E L V I C F L O O R
D Y S F U N C T I O N
L E E D S C O M M U N I T Y H E A L T H C A R E N H S
T R U S T
Management for the
neurological bowel

28. A S S E S S M E N T - O N G O I N G
L I F E S T Y L E
L A X A T I V E S
R E C T A L M E D I C A T I O N
A B D O M I N A L M A S S A G E *
R E C T A L I R R I G A T I O N
Pathway

30. T H R O U G H O U T A S S E S S M E N T , M A N A G E M E N T
A N D T R E A T M E N T , E M P O W E R T H E P A T I E N T
T O U N D E R S T A N D A N D L E A D T H E I R O W N
C A R E
E X P E R T P A T I E N T - D O H
Lifestyle - education

31. Lifestyle - Diet

32. K E Y P O I N T S
• R E G U L A R E A T I N G
• F I V E A D A Y
• B U L K E R
• F L U I D I N T A K E
• B E C A R E F U L O F …
• M O R N I N G R O U T I N E
• T O I L E T P O S I T I O N
• D I E T E T I C R E F E R R A L
Lifestyle - Diet

33. K E Y P O I N T S
• S U P P O R T S B O W E L M O V E M E N T – M O R N I N G
R O U T I N E
• P E L V I C F L O O R R E T R A I N I N G
Lifestyle - Exercise

34. K E Y P O I N T S
• B E M I N D F U L O F M E D I C A T I O N T H E
P A T I E N T I S T A K I N G E I T H E R O N
P R E S C R I P T I O N A N D / O R O V E R T H E
C O U N T E R I N R E G A R D S T O ;
• stool consistency
• influence on smooth muscle
Medication - others

35. L A X A T I V E S A N D R E C T A L M E D I C A T I O N / I R R I G A T I O N
Q U E S T I O N
“ I S I T A P R O B L E M L O A D I N G T H E R E C T U M O R
S H O O T I N G ?
L O A D E D G U N T H E O R Y
Medication

36. B U L K I N G – E . G . F Y B O G E L
S T I M U L A N T – E . G . S E N N A
S O F T E N E R – E . G . L I Q U I D P A R A F F I N
O S M O T I C / I S O O S M O T I C – E . G . L A C T U L O S E M O V I C O L
P R O K I N T I C – E . G . P R O C A L O P R I D E
Medication – oral laxatives

37. K E Y P O I N T S
• W H A T A S B E E N T R I E D , H O W L O N G , R E S U L T S
• W H A T T H E Y A R E O N A T P R E S E N T A N D H O W D O T H E Y
U S E A N D W H A T A R E T H E R E S U L T S
• W H A T T Y P E O F L A X A T I V E S – 5 G R O U P S
• U S I N G T W O F R O M S A M E G R O U P ?
• A R E T H E Y O N M O R E T H A N 3
• D O T H E Y U S E S O M E T H I N G T O C O N S T I P A T E I . E .
L O P E R A M I D E
• I S L I F E S T Y L E A S P E C T S A S G O O D A S T H E Y C A N B E
• A R E T H E Y O N P R E S C R I P T I O N O R O V E R T H E C O U N T E R
• M S W H A T E L S E I S W R O N G
Medication - laxatives

38. • S U P P O S I T O R I E S – E . G . G L Y C E R I N
• E N E M A S E . G . M I C R A L A X O R P H O S P H A T E
K E Y P O I N T S
• D O E S R E C T U M N E E D M O R E S T I M U L A T I O N T O A I D
C L E A R A N C E
• T R I A L R E C T A L M E D I C A T I O N
Medication – rectal medication

39. K E Y P O I N T S
• O N C E E N E M A S A N D S U P P O S I T O R I E S A R E
N O T F U L L Y E F F E C T I V E
• C O U L D C O N S I D E R D I G I T A L S T I M U L A T I O N
A N D / O R M A N U A L R E M O V A L O F F A E C E S .
• N E E D T O R E M E M B E R T H E A B O V E I S G O O D
A T C L E A R I N G R E C T U M , B U T L O A D I N G
C O U L D R E M I N D I N S I G M O I D A N D
D E S C E N D I N G C O L O N
• LEADING TO FURTHER RECTAL LOADING LATER
IN DAY
• SOILING
S0 to trans anal irrigation

41. Mini – Qufora and Aquaflush

42. Cone – Qufora and Aquaflush

43. Cone – Irypump

44. Rectal catheter system –
Peristeen and Qufora

45. Rectal catheter system - Navina

46. Reference reading

47. J E N . L O D G E @ N H S . N E T
( A L L L O W E R C A S E )
Thank you

48. McClurg D, Norton C. What is the best way to manage
neurogenic bowel dysfunction? BMJ2016; 354 doi:
http://dx.doi.org/10.1136/bmj.i3931(Published 27 July
2016)

49. Common Neurogenic
Conditions15
Total world UK Total Bowel Dysfunction
Multiple Sclerosis 2,500,000 127,000 70% FI, 70% constipation
Parkinson’s 6,300,000 120,000 24% FI; 20-80% constipation
Spinal Cord Injury 133-226,000 per year 50,000 23% FI; 80% constipation
Alzheimer’s 25 million 850,000 50% mid stage affected
Stroke 16,000,000 per year 23%FI, 25%constipaion
Cochrane review published in 2014 identified 20 randomised
controlled trials (902 participants) comparing different
management strategies and concluded that evidence was of poor quality
Importantly five studies that reported on the use of cisapride and tegaserod had
been excluded in this update due to adverse cardiovascular effects and
subsequent withdrawal.
Using the same search criteria we updated the Cochrane searches from 2014
and identified 8 additional RCTs (all of low quality) with a total of 367
participants (Table 1). Stroke was the main population studied with a total of 741
participants.
152,000 per year

50. Approach Population
S
Studies/
Number of participants
Outcome Risk of bias Cochrane Review
20142 Please refer to the review for full
references
Additional
Studies identified
Diet or fluid
Education
Stepwise advice
Carbonated water
Inulin fortified beverage
Stroke
SCI
Stroke
Wheel chair
None
1: n=146
1: n=68
1: n=34
1: n=15
Some benefit
No change
Some benefit
No Change
Medium
Medium
High
High
Harari 2004
Coggrave 2010
Mun 2011
Dahl 2005
Physical Interventions
Daily standing
Abdominal massage
SCI
Mixed, Stroke
MS
PD
1: n=20
4: n=125
1: n= 31
1: n= 30
1: n=30
No effect
Limited benefit
Some benefit
Some benefit Some
benefit
High
Medium
High
Low
Low
Emly 1998
Jeon 2005
McClurg 2011
Kwok 201510
McClurg 201311
Medications
Psyllium
Isosmotic Macrogol
Prucalopride
Intravenous neostigmine-
glycopyrrolate
Lubiprostone
4- aminopyridine
PD
PD
MS
SCI
SCI
PD
SCI
1 n= 7
1: n=57
1: n=11
1: n=23
2: n=13
n= 7
1: n=54
1: n=27
No benefit
No benefit
Some benefit
Not significant
Some benefit
Some benefit
Marked benefit
Marked benefit
High
High
High
Medium
High
Medium
High
High
Asraf 1997
Zangaglia 2007
Medaer 1999
Krogh 2002
Korsten2005
Rosman 2008
Ondo 201212
Grijalva 200713
Rectal Stimulants
Bisacodyl sup PGB
Timing of suppository use
SCI
Stroke
2: n=75
1: n=46
Marked benefit
Some benefit
Morning better
High
High
Cornell 1973
House 1997
Venn 1992
Acupuncture
Chinese Medication
Stroke
Stroke
2:n=75
1: n=160
1:n=200
Some benefit
Some benefit
Difficult to interpret
Medium
Medium
High Huang 2002
Ren 201314
Xiao 201115
Electrical stimulation
Dorsal genital nerve
Abdominal muscles
Electro acupuncture
Sacral Nerve stimulation
SCI
SCI
Stroke
MS &
SCI
1:n=7
1:n-8
1:n-80
1:n=12
1:n=5
Inhibitory effect on
rectum
Significant benefit
Unclear
High
High
High
High
Korstein 2004
Wang 2008
Worsoe 201216
Khan 201417
Transanal Irrigation SCI 1:n=87 Benefit Low Christensen 2006

51. Does abdominal
massage improve
chronic constipation?
Results from a
Cochrane Review

52.  106 records; screened 54 abstracts and obtained 35 full text papers. Nine
relevant trials (12 randomised controlled comparisons) were identified (427
participants).
 Patient populations were heterogeneous including individuals with severe
physical and mental disabilities, cancer, MS, Parkinson’s disease, and those
suffering from constipation without comorbid conditions.
 Five trials (183 participants) compared AM versus no treatment (or usual
care) where AM resulted in clinically and statistically significant benefits to
patients’ number of defaecations (mean difference (MD) -1.53, 95%CI -1.95
to -1.12, P<0.00001)
 The risk of bias of the included studies was generally unclear. Sample sizes
were small (less than 25 participants per arm) in 7/9 trials. Moreover, the
study designs were varied and treatment periods differed across trials
(ranged from 5 days to 8 weeks).

54. ABDOMINAL MASSAGE FOR
NEUROGENIC BOWEL
DYSFUNCTION IN PEOPLE WITH
MULTIPLE SCLEROSIS
McClurg D1, Goodman K1, Hagen S1, Manokian S1, John N2, Treweek S2, Emmanuel A3, Donnan P4, Norton
C5, Harris F6, Rauchhaus P4, Doran S1
1. Nursing, Midwifery and Allied Health Professions Research Unit, Glasgow Caledonian University, 2. University of Aberdeen, 3. University
College London, 4. University of Dundee, 5. Kings College London, 6. University of Stirling
Doreen.mcclurg@gcu.ac.uk
ICS Best
Abstract
award
Florence
Sept
2017
Short listed
Best
abstract
ECTRIMS
in Paris Oct
2017

55. NIHR disclaimer
The trial was funded by the United Kingdom National Health
Service through the National Institute for Health Research
Health Technology Assessment programme, open call Project
number HTA 12/127
The views and opinions expressed therein are those of the
authors and do not necessarily reflect those of the Health
Technology Assessment Programme, NIHR, NHS or the
Department of Health.
The authors also acknowledge the Support of the NIHR
through the Comprehensive Clinical Research Network

56. Project 12/12712
Flow Diagram: Abdominal massage for neurogenic bowel dysfunction in people with multiple sclerosis
(AMBER – Abdominal Massage for Bowel Dysfunction Effectiveness Research)
Process Evaluation Randomised Controlled Trials

Fidelity Study Trial process
Implemen-
tation
evaluation
Qualitative
Interviews • 10 centres, n=3000 MS patients,
• Screening of notes to potentially identify
participants
• 50% with NBD (n=1500) minus 50% (n=750)
contraindicated
• Number of potential participants n=750
• Letter of introduction sent to 750 participants
• Expression of interest form returned (50% [n=375])
• Further information covered by telephone call
• Informed written consent obtained ( n=200)
• Baseline questionnaires completed (n=200)
 Completion of all outcomes plus attrition (30% n=170)
Intervention
delivery
fidelity
Protocol
adherence
checklist
On-site visit
to all centres
Sample of
telephone
sessions
recorded
(n=20)
Participant
Interviews
include
describing
the massage
Random
checks on
completion
of study
documents
Scrutiny of
centre
recruitment
and
retention
Interviews
with key
stakeholders
(n=3X1)
Intervention
nurses,
recruiters or
local PIs
interviewed
at the three
case study
sites twice,
at start and
at 6 months
(n=6X2)
Question-
naire to
other
centres
Additional
checks on
centres
failing to
recruit to
target
Purposive
sample of
MS
(n=30:10 per
Case Study
Sites
interviewed
at baseline
and 24
weeks
On study
completion,
interviews
with
Intervention
Nurses,
recruiters or
local PIs
(n=6)
Full trial MS (n=200)
Randomised
Intervention
(n=100)
Control
(n=100)
All participants
Attend one hour clinic appointment with Intervention Nurse and receive
Information Pack plus:
Optimised bowel care advice3
+
Massage training delivered by nurse
+ DVD
Advised on frequency of massage
Optimised bowel care advice
(e.g. diet, fluid, positioning
advice)
Massage
fidelity
Massage diary
completed by
participants
during
intervention
period
All participants
Receive one telephone call per week for 6 weeks from Intervention
Nurse.
Discuss bowel care (both groups) and massage (intervention groups only)
Outcome Measure (Baseline, Week 6 and 24)
Primary OCM - NBD score from self-complete questionnaires at week 24
Secondary Outcome Measures - Constipation Scoring System, Qualiveen
Questionnaire and EQ-5D, Bowel Diary
Mechanistic measures at 1 centre
30 MS patients standard ano-rectal physiology test at baseline and 24
weeks (intervention group have an additional pressure test during
massage)

57. Assessed for eligibility (n= 237;
60.8%)
Excluded
¨ Not meeting inclusion criteria (n=29; 7.5%)
¨ Eligible but not randomised (n=17; 4.4)
Baseline NBD score received (n=90; 100%)
Baseline NBD score for analysis (n=86; 95.6%)
Baseline NBD scores with missing information (n=4;
4.4%)
Allocated to intervention (massage) (n=91)
¨ Received allocated intervention (n-90)
¨ Did not receive allocated intervention (n=1)
Analysis
Randomized (n=191; 49.1%) of those approached about study)
Allocated to standard care (n=100)
¨ Received allocated intervention (n=99)
¨ Did not receive allocated intervention (n=1)
EnrollmentFollow-upAllocation
Information given about the study
(n=389)
Did not reach eligibility screening:
¨ Declined participation (n=52; 13.4%)
¨ Did not respond to initial invite (n=100;
25.7%)
AMBER Consort
6wk NBD score received (n=64; 71.1%)
6wk NBD score for analysis (n=62; 68.9%)
6wk NBD scores with missing information (n=2; 2.2%)
24wk NBD score received (n=72; 80%)
24wk NBD score for analysis (n=69; 76.7%)
24wk NBD scores with missing information (n=3; 3.3%)
Baseline NBD score received (n=99; 100%)
Baseline NBD score for analysis (n=94; 94.9%)
Baseline NBD scores with missing information (n=5; 5.1%)
6wk NBD score received (n=90; 90.9%)
6wk NBD score for analysis (n=83; 83.8%)
6wk NBD scores with missing information (n=7; 7.1%)
24wk NBD score received (n=90; 90.9%)
24wk NBD score for analysis (n=84; 84.8%)
24wk NBD scores with missing information (n=6; 6.7%)

58. Demographics
• Age – mean 52.3(SD10.83)
years
• Duration of MS mean 14.8 (SD
9.18) years
• 35 male, 154 female
• Type of MS
– 56% Relapsing remitting,
– 31% Secondary progressive,
– 11 Primary Progressive,
– 1% Benign
0
20
40
60
80
100
120
140
160
180
200
Jan-15 May-15 Sep-15 Jan-16 May-16
NumberofpeoplewithMS
randomised
Recruitment Month
PREDICTED
number of
people with
MS
randomised
ACTUAL
number of
people with
MS
randomised

59. Baseline cont
• 58% spending between 5 and 20 minutes, 11% 20-30
minutes on the toilet
• 50% taking laxatives
• 18% digital assistance or enema
• 65% had unsuccessful attempts at evacuation (per 24
hours)
• Constipation 31% > 10 years

60. Patient tools

61. Outcomes – Primary NBDS
Active Control Active Control Active Control
Outcome
Baseline
mean(SD)
Baseline
mean(SD)
6 weeks
mean(SD)
6 weeks
mean(SD)
24 weeks
mean( SD)
24 weeks
mean (SD)
NBD 7.6 8.6 8.4 9.1 7.4 8.7
5.31 5.08 6.2 5.72 5.23 5.7
Abdominal Massage
(N=90)
Standard care
(N =99)
Mean difference in change
between groups, mixed
models
Change from
Baseline
N Mean Change
(95% CI)
N Mean Change
(95% CI)
Adjusted*
(95% CI)
p-value
Primary outcome
Neurogenic Bowel Dysfunction Score
6 weeks 61 0.6 (-0.73, 1.98) 80 0.9 (-0.5, 2.22) -0.58 (-2.38,
1.22)
0.5236
24 weeks 66 -0.6 (-2.11, 0.93) 80 0.5 (-0.78,
1.83)
-1.64 (-3.32,
0.04)
0.0558
Analysis of Change from baseline
Scores
0
5
10
Score
Neurogenic Bowel
Dysfunction Total
Score
Interven
tion
Control

62. Stools passed per week
Abdominal Massage
(N=90)
Standard care
(N =99)
Mean difference in change
between groups, mixed
models
Change from
Baseline
N Mean Change
(95% CI)
N Mean Change
(95% CI)
Adjusted*
(95% CI)
p-value
Stools passed (/week)
6 weeks 67 0.4 (0.07, 0.68) 88 0 (-0.34, 0.39) 0.38 (-0.08, 0.85) 0.1036
24 weeks 56 0.1 (-0.34, 0.51) 80 -0.5 (-0.88, 0.02) 0.62 (0.03, 1.21) 0.039
Active Control Active Control Active Control
Outcome
Baseline
mean(SD)
Baseline
mean(SD)
6 weeks
mean(SD)
6 weeks
mean(SD)
24 weeks
mean (SD)
24 weeks
mean (SD)
Pass stool freq 3.9 4 4.3 3.9 4.3 3.9
1.68 1.74 1.87 1.81 1.88 1.89
Analysis of Change from baseline
Scores
3.5
4
4.5
Numberofdefaecations
perweek
Frequency of
defaecation
Abd
Massage
Control

63. Feeling of complete evacuation
Active Control Active Control Active Control
Outcome
Baseline
mean(SD)
Baseline
mean(SD)
6 weeks
mean(SD)
6 weeks
mean(SD)
24 weeks
mean (SD)
24 weeks
mean (SD)
Feeling of complete
evacuation
1.9 1.8 2.6 2.2 3.0 2.2
2.0 1.73 2.20 2.02 2.32 2.14
Analysis of Change from Baseline
Abdominal Massage(N=90) Standard care
(N =99)
Mean difference in change between
groups, mixed models
Change
from
Baseline
N Mean Change
(95% CI)
N Mean Change
(95% CI)
Adjusted*
(95% CI)
p-value
Feeling of complete evacuation
6 weeks 67 0.4 (0.07, 0.68) 84 0.2 (-0.2, 0.6) 0.48 (-0.10, 1.06) 0.104
24
weeks
56 0.1 (-0.34, 0.51) 75 1.08 (0.41, 1.76) 1.08 (0.41, 1.76) 0.002
0
2
4
Numberofsuccessfl
evacuation
Timepoint
Feeling of
successful
evacuation
Abd
Mass
Control

64. Qualitative study - Aim
• Effect constipation has on the lives of people with MS
• Trial experience
Recruitment
Fidelity to trial protocol
Training and the training materials
• Massage
View on undertaking the massage
Beneficial or not
Lifestyle changes
Continuation

65. Characteristics of interviewees
Age
range
Gende
r
Employment
Status
Geographical
Location
Type of
MS
Years
with MS*
<21
n=0
21-30
n=0
31-40
n=1
41-50
n=4
51-60
n=7
>60
n=8
Male
n=1
Female
n= 19
Unemployed
n=2
Employed
n=3
Business owner
n=1
Retired
(on ill health basis)
n=12
Retired (reached
retirement age)
n=2
W Scotland
n= 3
NW England
n=10
NE England n=6
SE England
N=1
Benign
N=0
Relapsing
remitting
n=11
Secondary
Progressive
N=8
Primary
Progressive
N=1
<5 n=3
5-10 n=3
11-20 n=6
21-30 n=3
>30 n=6

66. Interviews
First stage at week 4 Second Stage at end of study
Personal experiences with MS and bowel
problems
Issues faced during first stage
Recruitment into trial Trial paperwork
Massage training Weekly nurse calls
Weekly nurse calls Any other challenges to lifestyle
Trial paperwork Impact of massage on bowel
problems
Administering massage Unexpected health benefits of
massage
Initial impact of massage on bowel
problems
Post-trial intentions with the massage
Any problems Any problems
Advice for other patients/staff members Advice for other patients/staff
members
Effleurage – using the
palm of your hand a
firm movement starting
at the patients right
groin, across and then
down towards the left
groin

67. Living with Bowel Dysfunction
My whole life is ruled
by my bowels – that’s
all I think about every
day 24/7
I can go for days without having to go to the toilet, it
can be like a week and of course my stomach ends up
bloated away out to here and then you get worried
that if you go out somewhere that you're going to have
to make a quick dash to the toilet, and then when
you're there you can be there for ages; so if you're out
with friends and you disappear to the toilet, you're
stressed cause you think, “God, they're going to
wonder where I am, what's happened?” and it
becomes embarrassing then, and I have on maybe two
occasions actually had an accident when I've been out
and it's just been an absolute nightmare, so you've got
to try and plan ahead, you know, to work round it”

68. “At the moment it's absolutely disastrous, like
today I won't even answer the doorbell if the
doorbell rings. […] That's what happens when I
have a day that I know I'm going to spend it
hanging around hovering trying to go to the
toilet, I can't even answer the door, I can't leave
the toilet cause I'm scared I'll have an accident,
[…] I have no control whatsoever”
Lack of evidence based treatments

69. Taking part in the AMBER trial
Feedback on training materials
DVD
Quick reference guide
Experiences of doing the massage
Fitted massage into their daily
routine
Support
Telephone support important
Context Mechanism/Action Outcome
Severity of MS Ability to do massage Impedes adherence or
effective massage technique
unless administered by a
carer
Physical weakness/mobility
issues/fatigue
Adaptability and
commitment to continue
Achieves adherence via
adaptations to massage
technique or enlisting help
Greasy massage oil leads to
increased time involved (e.g.
showering after massage);
may reduce adherence
Adaptability and
commitment to continue –
use alternative massage
products
Continued adherence; no
lubricant used may lead to
poor massage technique and
negative outcomes

70. Positive and negative
15/20 interviewees reported positive improvement, empowerment and control over their bowel habits
By the time of the second stage interviews, one participant said:
Others reported benefits from doing the massage included feeling less bloated, clothing becoming looser
and a decrease in sluggishness, which reduced fatigue levels.
Some participants were also able to stop or reduce laxative usage, which were reported to disrupt sleep
patterns. Improved diet was also noted by some participants, which was particularly important for those
who ate very little because of their bowel problems. One person, who had a diminished appetite at the
beginning of the trial stated that by the end:
At the second stage of interviews all 15 people who had reported some improvements agreed that
participating in the trial had been worthwhile.
“I have to make
myself look back to
see how bad things
were because there’s
a terrific
improvement”
“I don‘t think
I’ve been tired
since I’ve been
on this trial”
“It’s weird to
say I feel
hungry, even
saying the word
starving”
‘I know when I
get to the toilet
I’m going to have
a bowel
movement”

71. Negative
5 of the 20 interviewees reported no improvement although 2 of these were continuing with the massage at 24 weeks
HCP
Some conflicting reports when qualitative interviews
were compared to bowel diary data
Context Mechanism/Impact Outcome
High severity of
MS: reduced
mobility, fatigue,
severe
constipation,
numbness and
lack of sensation
Reduced ability to
massage effectively or
apply correct pressure
unless carer administers
the massage; high
severity of bowel
problem means it is
difficult to show an
improvement
No
improve-
ment
(n=5)
Bowel diary
reports show ideal
stool type,
reasonable
frequency and
duration on toilet
Bowel diary cannot
demonstrate improvement
as baseline recorded as
‘ideal’ with no capacity to
demonstrate benefit
“It started to work a
little bit —that was
really good —
unfortunately it didn’t
last”
- Some of them
when you’re
watching
them doing it and
you’re thinking
‘how effective is
that going to be?’

72. Conclusion
• Abdominal massage may offer relief of symptoms in
some people with MS who suffer from constipation
• Self-massage is favoured by patients but may not always
be as effective due to disability
Future research
• Development of a massage device
• Mechanistic – slow transit studies

73. • McClurg D, Harris F, Goodman K, Doran S, Hagen S,
Treweek S, et al. Abdominal massage plus advice,
compared with advice only, for neurogenic bowel
dysfunction in MS: a RCT. Health Technol Assess
2018;22(58).
ICS Neuro Nov 2014

74. (Emmanuel et al 2013)
A proposed stepwise approach
Abdominal massage
Pelvic floor
muscle training
Defaecation dynamics
Individual assessment
Self-management
with support

75. Mowoot
Horizon 2020 European grant
GCU Clinical trial
Neurological Patients (40-50)
Transit studies before and after
Ethics next week
Secondment for a year

76. http://www.gcu.ac.uk/amber/resources/videosforstudyparticipants/

77. What do people living with MS
want?
Christine Norton PhD MA RN
Professor of Nursing
King’s College London

78. Our recent research
• Funded by MS Society & Aims2Cure
• Interviews and development of care
pathway recommendations
• Phase 1: interviews with patients and
carers (purposive sample recruited via MS
Society)
• Phase 2: interviews with range of Health
Care Professionals
• Phase 3: stakeholder consensus on
recommendations and care pathway

79. Phase 1 objectives
• To investigate 'what it is like' to live with bowel
incontinence or constipation caused by MS, and
the ways in which these symptoms impact on
the lives of people with MS and their family
carers;
• To find out what self-management strategies
people with MS use, the areas where such
strategies could be strengthened with
appropriate support and information, and the
input people with MS and their carers feel they
need from health care practitioners or support
organisations regarding self-management.

80. Phase 2 objectives
• To find out how continence and MS
specialist health care practitioners (HCPs)
currently think about and assess MS-
related incontinence and constipation, and
how they meet patient needs.

81. Phase 3 objectives
• To draw up a consensus statement on self-
management options, support services and
information, and care pathways for people with
MS-related bowel dysfunction, with a view to
informing future design of continence services
for this client group.

82. Methods
• Semi-structured interviews
• Topic guide for phase 1: very open
• Phase 2 topic guide derived from analysis
of phase 1
• Phase 3: present results from interviews
and see what happens!

83. Results – phase 1
• 41 people with MS (10 males) and 6
carers
• Range of MS severity/types, disabilities
and range of bowel problems
(incontinence, constipation, both)
• Six interrelated themes:
– Physical impact; Psychological impact; Social
impact; Impact on relationships and family;
Self-management strategies; Interaction with
health care practitioners

84. Physical impact
• “I can go seven to ten days without going
at all. And then when I do go, it’s horrific.
And it hurts. And it’s really stuck. And can
take me to sit there for a long time….it
makes me bleed and it makes me scream
sometimes. It’s that painful”. (participant
22, female with MS)

85. Psychological impact
• 'it's just horrible. And it just makes me
cry even when they’re cleaning me
up….it's so awful to have come to this. But
that's where you're at and you just have to
get on with it' (participant 39, female with
MS)
• ‘I could literally spend hours sat on the
toilet…it’s just really, really annoying. And
it just made me angry, because it was
such a waste of time.’ (participant 3,
female with MS)

86. Social impact
• ‘We used to go away for two or three night
breaks because we’ve stopped doing big
holidays.. and now, this year….we’ve said
really, we don’t think that’s really on
because it’s too difficult in strange toilets..’
(participant 39, female with MS)
• ‘Seeing family as well, you know,…. well
we just can’t do it now. That’s just not
feasible’ (participant 43, female with MS)

87. Impact on relationships and
family
• “Just makes everyone cross and angry
and grumpy, to be honest” (participant 3,
female with MS)
• “I don’t like it, put it that way, I don’t like it.
But I have to, put it like that, that’s the only
way I can describe it. I have to”
(participant 43, female carer)
• “at times I feel far more carer than
husband“ (participant 4, male carer)

88. • ‘I’m lucky (my 81 year old husband) is fit
enough to do it or I couldn’t be at home.
Or you would have to organise carers four
times a day.’ (participant 39, female with
MS)
• ‘It’s something that you never ever thought
you would have to do for your partner, put
it that way. You do it for your child, when
they’re (young) but you don’t expect to be
doing it for another adult.’ (participant 43,
female carer)

89. Self-management strategies
• ‘I still feel as if it’s very hit and miss, the
treatment that I’m doing. And I would like
someone to tell me if there’s anything else’
(participant 11, female with MS)

90. Interaction with health care
practitioners
• ‘But why would you give someone a laxative to
that degree with limited and poor mobility. I was
having accidents just to get to the bathroom. So
then you’d sit on the loo for four hours a day, just
waiting for it to take effect, because you wouldn’t
get there in time…… We weren’t going on
holiday, we weren’t socialising, I wasn’t going
out with friends. And then I just weren’t leaving
the house really for fear of accidents’ (participant
29, male with MS)

91. Results phase 2
• 19 health professionals: 5 MS nurses, 6
continence nurses, 3 bowel specialist
nurses, 3 medical consultants, 1
physiotherapist, 1 charity employee
• 4 themes: Service delivery around bowel
dysfunction needs to improve; Attitudes to
information-giving varied by service setting
and experience of healthcare practitioner;
The importance or priority given to bowel
dysfunction depends on individual interest;
Attitudes to clinical process were varied

92. Service delivery around
bowel dysfunction needs to
improve
• ‘should we have a better care system in
place so that family don’t have to take on
roles as carers? Ideally, yes[..] carers
should be carers and family should be
family. But the harsh realities of life are
that, in today’s world, and has always
been the case, that’s not necessarily going
to work’ (participant 63, medical
rehabilitation consultant)

93. • ‘The first I think is to educate healthcare
professionals to know that there’s
something they can do’ (participant 54,
consultant neurogastroenterologist)
• “They’re sitting in front of you and you
know they want to ask you something, but
they’re thinking, “Oh, should I or shouldn’t
I? Oh, better not.” (participant 65, bowel
nurse specialist)
• ‘but the ones that’s on their own (without
a family carer), they don’t have that
support, it’s more difficult…

94. • ‘But (arranging care at home is) a lot of,
you know what I mean, back and forth and
hard work. But you just need to know, you
know, what to do and how ….. and who to
phone and how … it’s a lot. And I don’t
think it should be like that’ (participant 65,
bowel nurse specialist)

95. Attitudes to information-
giving varied by service
setting and experience of
healthcare practitioner
• ‘you know, some of them are in a lot of
despair, because it’s just like, you know
what I mean, “Nobody tells me anything. I
don’t know anything, I’m just at the end of
my tether.” (participant 65, bowel nurse
specialist)

96. The importance or priority
given to bowel dysfunction
depends on individual
interest
• ‘Even though the district nurses were
going in to attend to his catheter, they
neglected to really deal with his bowels.
And I think that is an ongoing problem. I
have really struggled with district nurses
not really dealing with bowels’ (participant
60, MS nurse).

97. • ‘I mean as far as I’m concerned, it’s a
basic really, it should be’ (participant 60,
MS nurse)
• ‘there’s nothing more sad for me in a clinic
than when a patient says, “I didn’t know
you existed.” (participant 53, bowel nurse
specialist)

98. Attitudes to clinical process
were varied
• Generally, MS nurses tended to see
constipation issues as within their remit,
but if an individual presented with faecal
incontinence they would usually refer on to
a continence or specialist service.
• MS nurses reported they do not have the
capacity to provide appropriate follow up if
they give advice on bowel management.
• Continence CNSs wanted to see earlier

99. Phase 3
• 2 consensus meetings
• Lots of email consultation
• 2 meetings with MS nurses
• Care pathway
• But not complete agreement: when to ask
and who is responsible for what??

101. Conclusions
• Common and very troublesome
• Many impacts
• Patients want more proactive asking and
systematic help, with clear self help advice
and then clear pathways for professional
help if needed
• Professionals do not agree who is
responsible
• Next steps: compose self help materials
(website?) and education for MS Nurses

102. Questions?
Thank you