Aims: - Awareness of research in this area - To gain an overview of how to identify the transition to secondary progressive MS - To gain knowledge of how to assist pwMS in the transition stage - To give a practical example of a service providing transition support - Case studies

1. 1
Transition to secondary
progressive MS
MS Trust Conference– Nov 2016
Susan Hourihan
National Hospital of Neurology and
Neurosurgery, UCLH
susan.hourihan@uclh.nhs.uk

2. 2
Aims
• Awareness of research in this area
• To gain an overview of how to identify the
transition to secondary progressive MS
• To gain knowledge of how to assist
pwMS in the transition stage
• To give a practical example of a service
providing transition support
• Case studies

3. Golden era for RRMS

4. MS Trust Website
https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-
treatments/ms-decisions/disease-modifying-drugs

5. 11 DMTs
5
https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

6. But a mountain still to climb

8. Despite DMTs, MS is still a
long term condition
8

9. Predictors of progression
 Up to EDSS 4.0
 Older age of onset
 Cord onset>brainstem>visual/sensory
 Incomplete recovery from initial index event
 ?early second event
 ?frequency of attacks first 2-5 yrs
 From EDSS 4.0
 Unclear
 Not as clear as you might think!

10. SPMS pathology
Trapp Lancet Neurology 2009
Demyelination
Neuronal/
Axonal loss
Gliosis

11. Transition to SPMS
11

12. 12
Evidence base
65 to 90% of people with Relapsing Remitting MS
(RRMS) will experience transition to Secondary
Progressive Multiple Sclerosis (SPMS) within
approximately 30 years of disease onset (Tremlett et al.,
2010)

13. Importance of Transition to SPMS
Conversion to secondary progressive
(SP) MS is the key determinant of
long-term prognosis
(Scalfari, et al 2011)
13

14. Urgent need for research
An international collaborative
statement recently urged for a
concerted effort for research into
progressive MS (Fox et al., 2012).
14

15. Anecdotal
 SPMS may be perceived negatively
by the pwMS, since they may no
longer have access to drug
treatments and as living with some
degree of permanent disability is
physically and psychologically
confronted
(Alison Smith, 2009)
15

16. 16
Qualitative Research
Dissertation Hourihan (2013)
3 recently published studies:
O’Loughlin, et al (2016)
Davies, F. et al (2015).
Davies, F. et al (2016)

17. 17
Hourihan 2013 Results: Themes

18. O’Loughlin, et al (2016)
18

19. Davies, F. et al (2015).
19

20. Davies, F.et al (2016)
20

21. Findings
Studies/
Themes
Hourihan
(2013)
O’Loughlin
2016
Davies 2015 Davies
2016
Participant
s
PwMS (N=5) PwMS (N= 9)
and HP (N=7)
PwMS (N=
10) and
carers
(N=13)
HPs (N=11)
Naming the
change
Is this really
happening?
Realisation The
transition
Psychological
impact
Becoming a
reality
Reaction
Impact on
relationships
and
Meaningful
activities
A Life of
Struggle
Realities of
Living with
MS
Coping with
a life of
Brushing
oneself off
Realities of
Future
Providing
support 21

22. The transition
Realisation and reaction:
 PwMS who knew about SPMS were likely
to be more prepared for transition
(Davies et al. 2015) and reported a
gradual realisation of entering the SPMS
stage (Davies et al. 2015)
 Frustrated if the Neurologist didn’t raise
the discussion
 Those who didn’t know about SPMS
found reclassification a shock (O’Loughlin
2016)
22

23. 23
Naming of the process of change
• Noticing change-“I am noticing that things are getting
more difficult” (Bob, line 468)
• Unexpected transition- “I’d never heard of it” (Kath, line
125
• Being told “We can now assume it is SPMS” (Bob, line
37-42)
“I would now
class you as
secondary
progressive -
and that was it”
(Wilma)
“I can’t walk as
well. I had noticed
that I had gone
downhill. I
couldn’t vacuum.
I noticed changes
yes” (Kath)
“Nobody told me it
could happen.
Relapsing remitting,
as far as I was
concerned, I was in
that for life, until I
started limping”
(Ed)
“I think I was expecting it, but not “I have
reached progressive”. I thought, no, no I
couldn’t because I was in denial. I was
putting it down to my medication has
stopped” (Tara)

24. 24
Emotional Reactions
 Resistance to further treatment
 Frustration
 Despair
 Fear
 Guilt
 Embarrassment
 Grief
 Anger
 Anxiety
 Determination
 Acceptance

25. 25
Emotional Reactions
• The specific emotional reactions that are
common to any diagnosis of MS may
become even more pronounced during
the transition to secondary progressive
disease. One of the most common and
powerful emotions felt during this period
is grief (Kalb, 2000).
• Acknowledgement of the onset of SPMS,
has been associated with fear and low
mood (Thorne et al., 2004)

26. 26
SPMS
Shatters denial. Any conviction that
their disease was benign, or that they
were going to be the one person who
would beat it, is severely threatened.

27. 27
Transition
• Transition to SPMS forces people to
redefine their illness.
• This forced change in sense of self can
lead to the appraisal of having an
untreatable disease, which may partly
explain the emotional reactions that
potentially accompany the condition such
as fear, anxiety, depression, shame and
reduced self-efficacy (Kalb, 2000)

28. 28
Psychological consequences -“SPMS, it is scary”
(Bob, line 893)
•Disconnection between mind and body- “Mentally I am still independent but physically my body
is letting me down” (Kath, line 1051)
•Fear for the future-“I might not be able to go on much longer so I want to get things done as
quick as possible” (Ed, line 358)
•Enforced acceptance -“just a matter of learning to live with it” (Bob, line 46)
“Once you
switch to SPMS
I thought ‘Oh
no, it is a
downhill now
all the way’”
(Bob)
“Well I have to
accept it. I
can’t sit and
cry I’m afraid”
(Wilma)
“So I am going to
go on. I have to
in my way,
however I can do
it, I will do it”
(Tara)

29. A Life of struggle
 Impact of SPMS on life
 Social Relationships
 Meaningful activities
29

30. 30
Consequences to occupations-“I want to do
things myself and I can’t and that is very bad” (Tara, line 380)
• Transition from an invisible to a visible disability- “It is quite obvious to anybody that
sees me that I’m ill” (Ed, line 585)
• Impact on meaningful occupations–“I was very active, but now I can’t do anything. (Ed,
line558-569)
• Grief for lost occupation -“gardening was one of the big loves of my life” (Kath, line 377-
389).
“I can’t walk as
well. I had noticed
that I had gone
downhill. I
couldn’t vacuum.
I noticed changes
yes” (Kath)
“The difference
with RRMS, I used
to be able to work.
I was clumsy I
could laugh things
off” (Bob)
“It took me a
long time to
admit that I was
disabled” (Kath I used to love
going for walks in
the forest. But I
can’t do that
anymore” (Wilma)

31. 31
Impact on relationships “People can’t understand” (Wilma,
Line 315)
• Family and Friends “It’s comforting; it gives you confidence to know someone
is there” (Kath, line373).
• Health professional abandonment and assistance -“I feel like I am in a
cage just left to cope by myself” (Tara, line 1705).
“I love me wife
very much but I
couldn’t live
without her - I just
couldn’t manage”
(Ed)
“(My girlfriend)
joined the MS
support group …
we understood each
other and two years
on we are still
together” (Bob)
“When I was told I
have MS, there was
physio and OT. It
was nice. I am not
having that now;
nobody is coming
to me” (Tara)

32. Coping: Brushing oneself off and moving on
32

33. 33
Coping with a life of change- “I did everything myself, to not let
myself fall apart completely” (Bob, line 457).
•Need for information- “Nobody told me about… ” (Ed, line 271)
•Fighting “I am not going to ever give up” (Tara, line 514)
I contacted the MS Society,
spoke to them. It was really
me, using my intuition, my
brain. If I never had the
Internet I would have been
isolated completely” (Bob)
“In all the times I
have been coming
to the hospital,
nobody had ever
explained MS to
me” (Ed)

34. 34
Coping
• Self management strategies of fighting for
benefits and treatment
• Positive thought
• Searching for safe peer support

35. What helps pwMS at transition
 Pre-existing awareness of MS
Trajectory
 Frequent discussion about
possibility of SPMS
 Psychological support at time of re-
classification
 MDT input
(Hourihan, 2013; Davies et al, 2016;
O’Loughlin et al 2016)
35

36. 36
HP perspectives
 We tend to collude with our patients,
because we do not want them to lose hope
or become severely depressed
 The historical lack of treatment choices for
secondary progressive disease has
contributed to this reluctance to approach
the subject of transitioning MS. The fewer
treatments we have, the harder it is to talk
about it
(Kalb, 2000)

37. HP Perspectives
 “Neither doctors nor other therapists can cure
their clients or prevent their deterioration, and
this sense of impotence itself may be hard to
bear” (Segal, 2007, p.4)
37

38. HP Perspectives
 “The person delivering the news will be demonsied” (O’Loughlin,
2016)
 HPs reluctant to initiate discussions about SPMS because of
uncertainty about the stage and how to discuss (Davies, 2016)
 This may lead to the health professional giving up and hence
abandoning the pwMS. They may feel that they have no drugs
and therefore nothing to offer. Appointments become less
frequent. (Hourihan, 2013; Davies, 2016; O’Loughlin, 2016)
38

39. What helps HPs
 Routinely discussing concept of
progression
 Asking patients to perform self-
assessments of their own condition
prior to clinic appointments.
 Training in providing psychological
support
 Working with specialist MS MDT
(Davies et al, 2016; O’Loughlin et al 2016)
39

40. 40
Developing a clinical service
for Transition to SPMS
National Hospital of Neurology and
Neurosurgery, UCLH

41. Acknowledgement to B. Porter, MS Nurse Consultant, NHNN) 41
One route of care fits all
Clinical Service
Re-thinking a clinical service

42. 42
Separate routes according to need
Clinical Service

43. 43
Multiple Sclerosis Disease Trajectory
Newly
diagnosed
Minimal
impairment
Moderate
disability
Severe
disability

44. 44
Our clinics
Newly
diagnosed
Minimal
impairment
Moderate
disability
Severe
disability
DDC- outpatient
diagnostic clinic
Patient education
courses
Nurse/ Therapist support
and education clinics
Links to MDT
Relapse clinics
Disease modifying drugs
clinics
Nurse led follow-up
Physiotherapy clinics
OT clinics
Voc Rehab Clinic
Links to MDT
Links to continence team
Links to CBT
Telephone review clinic
MDT ax clinic
Nursing ax and symptom
management
Links to spasticity clinic
Wheelchair clinic
Voc Rehab Clinic
Links to MDT
Ax for ECU
Natalizumab/ fingolimod
Screening
MDT Clinic
Telephone review clinic
MDT ax clinic
Complex Care Clinic
Nursing ax and symptom
management
Mitoxantrone screening
Links to spasticity clinic
Wheelchair clinic
Links to MDT
Assessment for ECU
Palliative care clinic

45. 45
NHNN MS Transition clinic
 Concerns that needs of pwMS at
transition to SPMS not being met
 Piloted in 2009
 One clinic per month
 3 patients per clinic
 One hour appointments
 Neurologist, Occupational Therapist,
Physiotherapist, MS Clinical Nurse
Specialist

46. 46
The Team

47. 47
Referrals
 From MS consultants, GPs, Neurologists,
MS CNS, Therapists, psychologists
 Criteria:
 Confirmed past Dx of RRMS
 Recent transition to SPMS

48. 48
Pre-clinic
Prior to clinic patients are sent:
 pre-clinic questionnaire
 MSIS-29
 EQ5D5L

49. 49
Structure of Clinic
Medical review
 First diagnosed
 Medications
 Last steroids/ response
 Walking aids and when
 Main 3 priorities
Therapy/ Nursing review:
 Borough, Housing
 Typical day
 Bladder/ Bowel, skin, mood
 Physical / neuro assessment
 Walking assessment

50. 50
Structure of Clinic (continued)
 Transparent team clinical reasoning
collaboratively with patients
 Plan formulated and written in the clinic

51. Recent Audit of clinic (2016)
Most common impairments:
1) Bladder Dysfunction (85.29%)
1) Lower Limb weakness (85.29)
3) Fatigue(75%)
4) Balance (71%)
5) Spasm (60%)
51

52. 52
Common priorities
 Mobility
 Work
 Leisure
 Mood (depression and anxiety)
 Thinking skills

53. 53
Common
outcomes

54. Audit results :
Common referrals:
1. Physiotherapy (95.59%)
2. Occupational Therapy (85.29%)
3. Continence services (25%)
54

55. What should you be looking for?
 In groups, consider factors that you
may be looking for to identify when
pwMS may be in transition or early
SPMS
55

56. Factors
 Deterioration in absence of definite
relapse:
 Noticed particularly in Mobility
 Stopping valued activities
 EDSS 3-6
 Bladder symptoms
 Fatigue
56

57. 57
Case Study 1

58. 58
Case Study
• 34 year old female
• Anne
• Diagnosed MS: 1998
• Diagnosed SPMS: 2013
• Transition phase: identified retrospectively in
transition for 2 years
• EDSS: 4.0
• Medications:
• Fluoxetine 20mg od
• Betaseron 250mcg alt dei [currently suspended]

59. 59
Medical
 Noticed a two year decline in mobility
 Initially unable to run
 Impacting community mobility
 Impacting on her ability to function at work due to
fatigue, travel, concentration
 Giving up on her leisure and social activities due to
reduced mobility and fatigue
 Consultant informed she “was now SPMS”
 Offered no immediate support
 Immediate reactive depression episode
 GP visit for antidepressants
 Patient called MS helpline and was referred to
Transition clinic

60. 60
Social
• Lives with Parents in their two level semi-
detached home. No Adaptations.
• Studied at Cambridge
• Works in Local council in Energy
research
• Traveled and lived in Australia for several
years

61. 61
Work environment
• Works in London in Energy Efficiency Research.
• Independent in her role at work.
• Role is primarily desk based.
• Office located on second floor of building with no lift
available (handrail on stairs in place).
• Has recently disclosed her diagnosis of MS to
workplace with no reported current concerns.
• Fatigue is significantly impacting on her daily
commute to work and on her left hand performance
at work on computer based tasks.

62. 62
Outcome measures and assessment
• EDSS:4.0
• MSIS-29: 38/19
• EQ 5D/5L: 3 (Mobility); 1 (Self care); 2
(usual activities); 2 (pain/discomfort); 3
(anxiety/depression).
• EQ VAS: 65%

63. 63
From patient viewpoint, main three
problems
1. Walking
2. Balance
3. Stiffness in lower limbs

64. 64
Impairments
• Heat Sensitive Fatigue
• Reports poor memory
• Recent low mood however has improved with Fluoxetine
• Left leg and upper limb nerve conduction fatigue
• Bilateral leg muscle twitching reported
• Stiffness in Left leg in the morning
• MAS: Right plantar flexors MAS 1/5; Left hamstrings 2/5; 2/5
left plantar flexors
• Power Right leg: 5/5 ; 4/5 hip flexors
• Power Left leg: 4/5 hip flexors hip abduct dorsi-flexors and
evertors; 5/5 otherwise.
• Intact sensation
• Reduced core stability
• Impaired balance mechanisms
• Bowel dysfunction: relies on daily suppositories
• Reduced exercise tolerance/ Deconditioned

65. 65
Activities and Participations
• Fatigue affecting all ADLs (community mobility and travel to
work, typing at work, dressing)
• Independent dressing (Effortful sock donning)
• Left hand fatigues during typing tasks (after her commute).
• Mood impacting on participation in activities
• Effortful walking/ stair climbing (able to walk 250-500 metres with
impaired balance, left leg fatigue and reduced left leg clearance)
• Effortful bed transfers
• Dizziness in shower
• Unable to have baths due to heat sensitive fatigue
• Parents prepare meals, drive her to the train station daily
• Improved swallowing function with advice from SALT at NHNN

66. 66
Planned Intervention
• Outpatients Physiotherapy for balance, walking,
strength and tone of her lower limbs.
• Provide with information:
• AtW scheme for funded taxi travel to and from work
• Cooling garments and heat sensitive fatigue management.
• Cognitive Behavioural Therapy
• Vocational Rehabilitation:
• Information on workplace rights/responsibilities
• Work support services
• Future career planning
• Fatigue management in the workplace.
• Add name to research trial data base
• Telephone follow up by MDT member in 3 months
time
GP
• Continue to monitor Fluoxetine

67. Experience of Transition to
SPMS
67

68. 68
Task
• When someone receives a diagnosis of
SPMS in your service, what support is
currently offered?
• Thinking on today’s presentation, what
supports could you investigate offering in the
future?
• How do you/ could you offer the following
advice for your patients:
 MDT assessment
 Review of benefits
 ongoing professional support
 psychological support
 Web/ face to face peer support

69. 69
Case Study 2

70. 70
Case Study
• 52 year old female
• Amy
• Diagnosed MS: 2005
• Medications: Copaxone (unable to tolerate BIFN)
• She reported she was progressing in Sept 2012
• Referred for fampridine trial 2012- unsuccessful

71. Transition phase
Sept 2012
 EDSS: 4.5
 MSIS-29: 41/15
 EQVAS: 70/100
 EQ5D5L: 3;1;3;1;2
Oct 2013
 EDSS: 6.0
 MSIS-29: 50/19
 EQVAS: 50/100
 EQ5D5L: 4,2,3,2,2
71

72. 72
Medical
 Noticed a 18 year decline in mobility
 Consultant informed within MDT Clinic she had
progressed
 Offered immediate support
 Reports mood as good

73. 73
Social
• Lives with husband and 3 sons (ages
8,10,14) in their four level terraced
property (35 internal steps).
• No Adaptations.
• Works in marketing research

74. 74
Work environment
• Self employed in market research.
• Independent in her role at work.
• Role is primarily desk based.
• Office located on second floor of her home with no
lift available (handrail on stairs in place).
• Fatigue is significantly impacting on her mobility and
work.

75. 75
Impairments
 Nerve Fibre fatigue
 Bilateral lower limb weakness (left foot drop)
 Reduced core stability
 Increased tone bilateral hamstring2/4 on MAS
 Fed up, but not depressed
 Reduced balance
 Left foot drop
 Bladder urgency and hesitancy

76. 76
Activities and Participations
• Fatigue affecting all ADLs (community mobility and
travel to work, dressing, meal prep/ cooking in
standing)
• Reduced walking speed and distance with 1 walking
stick, maximum comfortable distance is 200m.
• Sits to cook/ wash up
• Using taxis to get to work
• Reduced dexterity when typing at work
• Reduced balance affecting stair climbing
(independent with rail) and use of bike
• Effortful bed transfers
• Increased time to manage toileting
• Reduced use of bicycle, now only using to bus stop
• Attends gym weekly but no specific exercise
programme in place.

77. Task
 Given this lady’s reported
impairments and problems with A &
Ps, what intervention would you
consider planning?
 Where should this intervention be
carried out?
77

78. 78
Planned Intervention
• Outpatients Physiotherapy for balance, walking and
provision of a guided gym programme.
• FES assessment for left foot drop
• Orthotic review by local team if possible (has AFO)
• Provide with information:
• AtW scheme for funded taxi travel to and from work
• Vocational Rehabilitation:
• Work support services
• Future career planning
• Fatigue management in the workplace.
• Trial use of powered scooter for community mobility
• Add name to research trial data base
• Telephone follow up by MDT member in 3 months
time
GP

79. 79
Conclusion
The experience of transition to SPMS
for pwMS
 Emotional journey with initial fear
 Enforced acceptance of change
 Bodies become unreliable
 Disability becomes visible
 Loss of occupations can cause grief
 PwMS can feel abandoned by HPs
 Information and emotional support required

80. The experience for HPs
Transition:
 Uncertainty of recognising SPMS
 Uncertainty how to communicate
Providing support:
 Challenging aspects of care
 Supporting carers
 MDT working
 Working with in service constraints
80

81. 81
Conclusion
When people are entering the Transition phase or are in early
SPMS:
 Ensure MDT assessment takes place
 Neurologist
 Nurse
 OT
 PT
 Ensure review of benefits
 Ensure mechanisms to access ongoing professional/
psychological support
 Supply sources information, on-line and peer support
HPs may need training to promote self management and
provide psychological support

82. References
 Fox, R.J., Thompson, A., Baker, D., Baneke, P., Brown, D., Browne, P.,
Chandraratna, D., Ciccarelli, O., Coetzee, T., Comi, G., Feinstein, A.,
Kapoor, R., Lee, K., Salvetti, M., Sharrock, K., Toosy, A., Zaratin, P. &
Zuidwijk, K. (2012) Setting a research agenda for progressive multiple
sclerosis: the International Collaborative on Progressive MS. Multiple
Sclerosis, 18(11), pp.1534–1540
 Kalb, R. (2000) Secondary Progressive Multiple Sclerosis: Clinical
Challenges & Treatment Advances. International Journal of MS Care,
(September 2000 Supplement), pp. 21-28.
 Olsson, M., Lexell, J. & Soderberg, S. (2008) The meaning of women’s
experiences of living with multiple sclerosis. Health Care for Women
International, 29, pp.416-430.
 Olsson, M Skar, L. & Soderberg, S. (2010) Meanings of feeling for women
with multiple sclerosis. Qualitative Health Research, 20(9), pp. 1254-
1261.
 Scalfari et al (2011) Age and disability accumulation in multiple sclerosis.
Neurology, 77, pp.1246–1252
 Segal, J. (2007) The effects of Multiple Sclerosis on relationships with
therapists. Psychoanalytic Psychotherapy, 21(2), pp.168-180. 82

83. References Continued
 Smith, A. (2009) Secondary progressive MS: meeting the challenge of
person centred care. Way Ahead, 13 (1), pp. 8-9
 Smith, J.A., Flowers, P. & Larkin, M. (2009) Interpretative
Phenomenological Analysis: Theory, Method and Research. London,
Sage.
 Thorne, S., Con, A., McGuinness, L., Mcpherson, G, & Harris, S.R. (2004)
Health care communication issues in multiple sclerosis: An interpretative
Description. Qualitative Health Research, 14, pp.5-22.
 Tremlett, H., Zhao, Y., Rieckmann, P. & Hutchinson, M. (2010) New
perspective in the natural history of multiple sclerosis. Neurology, 74, pp.
2004–2015.
 Malcomson, K.S. Lowe-Strong, A.S. & Dunwoody, L. (2008) What can we
learn from the personal insights of individuals living and coping with
multiple sclerosis? Disability and Rehabilitation, 30 (9), pp. 662-674.
 Fleming-Courts, N., Buchanan E.M. & Werstlein, P.O. (2004) Focus
Groups: The lived experience of participants with multiple sclerosis.
Journal of Neuroscience Nursing, 36 (1), pp. 42-47.
83

84. References
 O’Loughlin, E., Hourihan, S., Chataway, J., Playford ED. & Riazi A. (2016)
The experience of transitioning from relapsing remitting to secondary
progressive multiple sclerosis: Views of patients and health professionals.
Disability and Rehabilitation. Published online 16th August
2016http://dx.doi.org/10.1080/09638288.2016.1211760
 Davies, F., Edwards, A., Brain, K. Edwards, M., Jones, R., Wallbank, R.,
Robertson, NP. & Wood, F. (2015). ‘You are just left to get on with it’:
qualitative study of patient and carer experiences of the transition to
secondary progressive multiple sclerosis. BMJ Open 2015: 5:e0076474.
doi:10.1136/bmjopen-2015-0076474
 Davies, F., Wood, F., Brain, KE., Edwards, M., Jones, R., Wallbank, R.,
Robertson, NP. & Edwards, A. The transition to secondary Progressive
Multiple Sclerosis: An Exploratory Qualitative Study of Heal Professional’s
experiences. (2016) International Journal of MS Care. Doi:
10.7224/1537-2073.2015-062
84

85. Thanks to NHNN team and pwMS
susan.hourihan@uclh.nhs.uk
85