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Transition to secondary progressive MSMS Trust Conference– Nov 2016

Susan Hourihan

National Hospital of Neurology and Neurosurgery, UCLH

susan.hourihan@uclh.nhs.uk

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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

Golden era for RRMS

MS Trust Website

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

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

But a mountain still to climb

Despite DMTs, MS is still a long term condition

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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!

SPMS pathology

Trapp Lancet Neurology 2009

Demyelination

Neuronal/

Axonal loss

Gliosis

Transition to SPMS

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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)

Importance of Transition to SPMS

Conversion to secondary progressive (SP) MS is the key determinant of

long-term prognosis

(Scalfari, et al 2011)

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Urgent need for research

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

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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)

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Qualitative ResearchDissertation Hourihan (2013)

3 recently published studies:O’Loughlin, et al (2016) Davies, F. et al (2015). Davies, F. et al (2016)

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Hourihan 2013 Results: Themes

O’Loughlin, et al (2016)

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Davies, F. et al (2015).

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Davies, F.et al (2016)

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FindingsStudies/ Themes

Hourihan (2013)

O’Loughlin 2016

Davies 2015 Davies 2016

Participants

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 change

Brushing oneself off and moving on

Realities of Future Challenges

Providing support 21

The transitionRealisation 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)

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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)

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

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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)

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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.

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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)

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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)

A Life of struggle

Impact of SPMS on life Social Relationships Meaningful activities

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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)

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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)

Coping: Brushing oneself off and moving on

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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)

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Coping

• Self management strategies of fighting for benefits and treatment

• Positive thought• Searching for safe peer support

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)

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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)

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)

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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)

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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

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Developing a clinical service for Transition to SPMSNational Hospital of Neurology and Neurosurgery, UCLH

Acknowledgement to B. Porter, MS Nurse Consultant, NHNN) 41

One route of care fits all

Clinical Service

Re-thinking a clinical service

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Separate routes according to need

Clinical Service

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Multiple Sclerosis Disease Trajectory

Newly

diagnosed

Minimal

impairment

Moderate

disability

Severe

disability

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Our clinicsNewly

diagnosed

Minimal

impairment

Moderate

disability

Severe

disabilityDDC- 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 ClinicLinks to MDTAx for ECU

Natalizumab/ fingolimod Screening

MDT ClinicTelephone review clinic

MDT ax clinic Complex Care ClinicNursing ax and symptom management Mitoxantrone screening Links to spasticity clinic Wheelchair clinic Links to MDTAssessment for ECU Palliative care clinic

TRANSITIONAL /

SECONDARY

PROGRESSIVE

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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

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The Team

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Referrals

From MS consultants, GPs, Neurologists, MS CNS, Therapists, psychologists

Criteria: Confirmed past Dx of RRMS Recent transition to SPMS

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Pre-clinic

Prior to clinic patients are sent: pre-clinic questionnaire MSIS-29 EQ5D5L

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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

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Structure of Clinic (continued)

Transparent team clinical reasoning collaboratively with patients

Plan formulated and written in the clinic

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%)

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Common priorities

Mobility Work Leisure Mood (depression and anxiety) Thinking skills

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Common

outcomes

Audit results :

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

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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

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Factors

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

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Case Study 1

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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]

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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

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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

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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.

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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%

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From patient viewpoint, main three problems

1. Walking2. Balance3. Stiffness in lower limbs

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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

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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

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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

Experience of Transition to SPMS

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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

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Case Study 2

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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

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

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Medical Noticed a 18 year decline in mobility Consultant informed within MDT Clinic she had

progressed Offered immediate support Reports mood as good

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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

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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.

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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

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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.

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?

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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• Continue to monitor Fluoxetine

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ConclusionThe 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

The experience for HPs

Transition: Uncertainty of recognising SPMS Uncertainty how to communicateProviding support: Challenging aspects of care Supporting carers MDT working Working with in service constraints

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ConclusionWhen 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

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

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.

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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

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Thanks to NHNN team and pwMS

susan.hourihan@uclh.nhs.uk

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