This document provides an overview of transitioning from relapsing-remitting multiple sclerosis (RRMS) to secondary progressive MS (SPMS). It discusses how SPMS marks a transition to permanent disability that can be psychologically difficult for patients. The transition involves a forced acceptance of disability and loss of occupations. It impacts relationships and patients feel health professionals sometimes abandon them. The document advocates developing specialized clinical services to support patients' needs during this challenging transition stage of MS.

1. Transition to secondary
progressive MS
Jeremy Chataway
Susan Hourihan
National Hospital of Neurology and
Neurosurgery, UCLH
1

2. Aims
•
•
•
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
2

3. Golden era for RRMS

4. Reducing relapse rate: pivotal work

5. Fingolimod
Kappos: NEJM Feb 4 2010
N=1272

6. But a mountain still to climb
Gasherbrum IV

8. What is progression?

9. What is progression?

10. The progression

11. In MS? - Say walking
Primary/Secondary

12. Predictors of progression

Up to EDSS 4.0






From 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
Unclear
Not as clear as you might think!

13. ECTRIMS 2013-can we define SPMS early:
MSBase n~3550/21000; median 8-9yrs follow-up





D1) Physician designation
D2) first EDSS of 4 or more
D3) first EDSS of 3 or more associated with at least one 1point EDSS progression event within the 2 years prior to
this onset date
Identification of SPMS phase by physicians
occurs 4 to7 years later when compared
with pure EDSS based definitions
Physician designation of SPMS is more
specific than EDSS-based definitions, but
occurs later

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

15. Mechanisms

Oligodendrocyte loss/demyelination

Energy failure

Reactive oxygen/nitric oxide species

Excitotoxicity

16. Transition to SPMS
16

17. Importance of Transition to SPMS
Conversion to secondary progressive
(SP) MS is the key determinant of
long-term prognosis
(Scalfari, et al 2011)
17

18. 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)
18

19. 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)
19

20. 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.

Many not told—or did not hear when they were told—
that up to 50% of those with relapsing-remitting
disease are likely to make the transition to secondary
progressive MS within 10 years of diagnosis. Within 25
years, up to 90% can expect the transition.

They may have believed that if they were determined
enough, or careful enough, they would be relapsingremitting forever.
(Kalb 2000)
20

21. Meanings Attributed to
Transition
A belief that it is "bad luck"
• Personal failure
• A sign of weakness ("not strong enough")
• Treatment failure
• Punishment for past
failures/inadequacies
• A belief that it is “God’s will”
(Kalb, 2000)
•
21

22. Emotional Reactions









Resistance to further treatment
Frustration
Despair
Fear
Guilt
Embarrassment
Grief
Anger
Anxiety
22

23. 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)
23

24. 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)
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.
24

25. 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
(Smith, 2009)
25

26. Fractured sense of self

Women with SPMS, identified the
impact of loss of meaningful
activities on the sense of self and
that finding ways to maintain this is
important in helping people cope
with SPMS
(Olsson, Lexell & Soderberg,2008; Olsson, Skar &
Sodenberg, 2010)
26

27. Urgent need for research
An international collaborative
statement recently urged for a
concerted effort for research into
progressive MS (Fox et al., 2012).
27

28. Developing a clinical service
for Transition to SPMS
National Hospital of Neurology and
Neurosurgery, UCLH
28

29. Re-thinking a clinical service
Clinical Service
One route of care fits all
29

30. Clinical Service
Separate routes according to need
30

31. Multiple Sclerosis Disease Trajectory
Newly
diagnosed
Minimal
impairment
Moderate
disability
Severe
disability
31

32. Our clinics
Newly
diagnosed
DDC- outpatient
diagnostic clinic
Patient education
courses
Nurse/ Therapist support
and education clinics
Links to MDT
Minimal
impairment
Relapse clinics
Disease modifying drugs
clinics
Moderate
disability
MDT ax clinic
Nursing ax and symptom
management
Links to spasticity clinic
Nurse led follow-up
Physiotherapy clinics
OT clinics
Voc Rehab Clinic
Wheelchair clinic
Voc Rehab Clinic
Links to MDT
Ax for ECU
Severe
disability
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
Natalizumab/ fingolimod
Screening
Links to MDT
Links to continence team
Links to CBT
MDT Clinic
Telephone review clinic
Telephone review clinic
32

33. Multiple Sclerosis Disease Trajectory
Newly
diagnosed
Minimal
impairment
Moderate
disability
Severe
disability
33

34. Our clinics
Newly
diagnosed
DDC- outpatient
diagnostic clinic
Patient education
courses
Nurse/ Therapist support
and education clinics
Links to MDT
Minimal
impairment
Relapse clinics
Disease modifying drugs
clinics
Moderate
disability
MDT ax clinic
Nursing ax and symptom
management
Links to spasticity clinic
Nurse led follow-up
Physiotherapy clinics
OT clinics
Voc Rehab Clinic
Wheelchair clinic
Voc Rehab Clinic
Links to MDT
Ax for ECU
Severe
disability
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
Natalizumab/ fingolimod
Screening
Links to MDT
Links to continence team
Links to CBT
MDT Clinic
Telephone review clinic
Telephone review clinic
34

35. 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
35

36. Referrals


From MS consultants, GPs, Neurologists,
MS CNS, Therapists
Criteria:
 Confirmed
past Dx of RRMS
 Recent transition to SPMS
36

37. Pre-clinic
Prior to clinic patients are sent:
pre-clinic questionnaire
MSIS-29
EQ5D5L
37

38. 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

38

39. Structure of Clinic (continued)


Transparent team clinical reasoning
collaboratively with patients
Plan formulated and written in the clinic
39

40. Common priorities





Mobility
Work
Leisure
Mood (depression and anxiety)
Thinking skills
40

41. Common
outcomes
41

42. The Lived Experience of
Transition from Relapsing
Remitting to Secondary
Progressive Multiple SclerosisAn Interpretative
Phenomenological Analysis
Susan Hourihan
National Hospital of Neurology and
Neurosurgery, UCLH
42

43. Background
•
•
•
MS Transition clinic: RRMS to SPMS
60-90% pwRRMS will transit to SPMS
within 30 years of onset
No evidence to draw on
43

44. Aim
To gain an in-depth understanding of:
• the lived experience of adults moving
from a diagnosis RRMS to a diagnosis of
SPMS
• needs and supports at this time
44

45. 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)

The lived experience of RRMS (Malcomson, LoweStrong & Dunwoody,2008) and of established disability
(SPMS) (Fleming-Courts, N., Buchanan E.M. &
Werstlein, 2004) is documented. The transition
between these phases has not been reported.
45

46. Methodology
•
•
•
Purposive sampling allowed a
homogenous group
In-depth, semi-structured, face-toface interviews with 5 pwMS
Interviews explored:
 Experience
of transition to SPMS
 Associated feelings and thoughts
 Living with SPMS
 Needs and supports at SPMS
46

47. Transcription and analysis
•
Interviews were transcribed and
analysed using Interpretative
Phenomenological Analysis (IPA)
(Smith, Flowers & Larkin, 2009)
•
Member checking validated themes
via follow up telephone calls
47 47

48. Analysis
Interpretive
Phenomenological analysis IPA
(Smith et al 2009)
 Phenomenological
 Interpretative
 Idiographic
Researcher making
sense of the
participant making
sense
j
Participant
Making sense
of their
Life-world
48

49. Immersing self in the data
Step 1
Step 2
Step 3
Step 4
Step 5
Step 6
Step 7
Step 8
49
Reflect on own preconceptions processes.
Brief notes
Re-read several times & immerse self in data
Initial noting
Emergent themes
Connections across emergent themes
Moving to the next case
Look for patterns across cases

50. 5 Themes
50

51. Results: 5 Themes Identified
Transition to SPMS is “scary” (Bob) but ”you learn to live with it”
(Wilma). RRMS was inconvenient, but not associated with
permanent disability. Onset of SPMS was reported as a transition
to visible disability.
51

52. 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“Nobody told me line 37-42)
is SPMS” (Bob, it
“I would now
class you as
secondary
progressive and that was it”
could happen.
Relapsing remitting, as
far as I was concerned, I
was in that for life, until
“I can’t walk as well.
I had noticed that I
had gone downhill. I
couldn’t vacuum. I
noticed changes yes”
(Kath)
I started limping” (Ed)
(Wilma)
“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)
52

53. 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
“So I am going to go
to SPMS I thought
on. I have to in my
‘Oh no, it is a
way, however I can
downhill now all
the way’” (Bob)
do it, I will do it”
“Well I have to
(Tara)
accept it. I can’t
sit and cry I’m
afraid” (Wilma)
53

54. 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).
“The difference with
“I want to do
RRMS, I used to be
things myself
able to work. I was
and I can’t
clumsy I could laugh
and that is
“I can’t walk as well.
things off” (Bob)
I had noticed that I
had gone downhill. I
couldn’t vacuum. I
noticed changes
very bad”
“It took me a
I used to love
(Tara)
long time to
going for walks
admit that I was
in the forest.
disabled” (Kath
But I can’t do
that anymore”
yes” (Kath)
54

55. 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
“People can’t
“(My girlfriend)
“I love me wife very
to cope by myself” (Tara, line 1705).
understand”
joined the MS
much but I couldn’t
(Wilma)
support group […]
live without her - I
we understood each
just couldn’t
other and two years
“When I was told I
manage” (Ed)
on we are still
have MS, there was
together” (Bob)
physio and OT. It was
nice. I am not having
that now; nobody is
55

56. 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
“In
the times
•Fighting “I am not going to ever give up”all(Tara, lineI 514)
271)
have been coming to
“I did everything
the hospital, nobody
myself, to not let
had ever explained
myself fall apart
MS to me” (Ed)
completely”
(Bob)
I contacted the MS
Society, spoke to them.
“I am not going to ever give
It was really me, using
my intuition, my brain.
up” (Tara)
If I never had the
Internet I would have
56

57. Relevance to current literature
This is the first study reporting the
experience of transition to SPMS for
pwMS
Emotional journey with initial fear
 Enforced acceptance of change
 Disconnection between body and mind is
reported
 Bodies become unreliable
 Disability becomes visible
 PwMS can feel abandoned by HP’s
 Loss of occupations causes grief
 Information and emotional support required

57

58. Coping
•
•
•
Self management strategies of fighting for
benefits and treatment
Positive thought
Searching for safe peer support
58

59. Key findings
•
First study which examined the lived experience of the
transition of adults with MS from RRMS to SPMS
•
Although small in size, the study has added to the
current literature in highlighting that pwMS, at the time
of re-classification of their MS sub-type to SPMS may
report negative changes to their psychological function
and limitations in their participation in meaningful
occupations, which may benefit from intervention.
•
Further research to confirm the themes identified in this
study.
59

60. Considerations & Implications
for practice
•
•
•
•
•
HP’s awareness that transition may mark a period of
significant impact on psychological functioning and
participation in meaningful occupations
A collaborative approach between HP’s and pwMS to reclassifying the condition
Referral to MDT services to address psychological,
educational, rehabilitation needs
Direction to safe and reliable information and resources
on SPMS, disability benefits and MS Peer support
groups
HP communication at the onset of SPMS to reduce the
sense of abandonment
60

61. Research recommendations
•
•
•
Repeat
• Larger sample size
• Researcher peer review of themes
• Narrower time range of time from onset of
SPMS
A prospective, longitudinal study of the lived
experience of MS across the disease trajectory
to capture issues specific to each stage of the
disease.
A study examining benefit of specific forms of
interventions, which enhance supportive
mechanisms and address unmet needs.
61

62. Case Study
62

63. Case Study
•
•
•
•
•
•
34 year old female
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]
63

64. 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
64

65. Social
•
•
•
•
Lives with parents in their two level semidetached home. No Adaptations.
Studied at Cambridge
Works in Local council in research dept
Traveled in Australia for several years
65

66. Work environment
•
•
•
•
•
•
Works in research.
Independent in her role at work.
Role is 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.
66

67. 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%
67

68. From patient viewpoint, main three
problems
1.
2.
3.
Walking
Balance
Stiffness in lower limbs
68

69. 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
69

70. 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
70
at NHNN

71. 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
•
71

72. Conclusion
When people are entering the
Transition phase or are in early SPMS:
 Ensure
MDT assessment takes place
Neurologist
 OT
 PT
 Nurse

 Ensure
review of benefits
 Ensure mechanisms to access ongoing
professional/ psychological support
 Supply sources of on-line peer support
72

73. 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. 12541261.
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
73
therapists. Psychoanalytic Psychotherapy, 21(2), pp.168-180.

74. 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.
74