Exploring the transition to SPMSPatient, carer and professional perspectives

Professor Adrian EdwardsDr Freya Davies

Institute of Primary Care and Public Health, Cardiff University

Introduction to our research

Methods – What we did

Presentation of results – Key themes for patients, carers and professionals

Practice Implications – Breakout activity

Translating our results into recommendations

Your feedback on our suggestions

Overview

Known to be difficult for clinicians to confidently identify(1)

Known to be a potentially difficult stage for patients(2)

BUT little research has looked specifically at the experiences of patients(3), carers and clinicians at this stage

Transitioning to SPMS

Identify the support needs of patients with MS around the transition

Identify the support needs of their carers

Identify the educational needs of health care professionals working with patients at this stage

Aims

Cardiff MS database(4)

contains details of over 2200 patients with MS

Collects information from clinical encounters on disease course, relapses and EDSS

Supplemented by an annual patient questionnaire

Database

Time to reach SPMS in years

Years

Solid line = adult onsetDotted line = paediatric onsetMedian time in years to reach SPMS shown (5)

Semi-structured interviews with patients, carers and clinicians

Focus groups for validation of initial findings with patients and carers

Written validation exercise with clinicians and educationalists

Methodology

Twenty patients were interviewed, eight also attended a focus group

Aged 33-67 75% female 6-34 years since diagnosis EDSS 4 – 7.5 Clinician diagnoses of RRMS, SPMS and

SPMS with relapses

Patient participants

Thirteen carers were interviewed, 1new carer attended a focus group

Aged 36-76 8 male, 6 female Relationship to person with MS = 8

partners, 4 parents, 1 sibling, 1 close friend. Time as a carer = 4-37 years

Carer participants

2 Consultant Neurologists 3 MS nurses 1 Neurophysiotherapist, 1 Occupational therapist (Neurology) 1 Neuropsychologist 1 District nurse 1 GP with an interest in neurology 1 Social worker

Professional participants

Qualitative thematic analysis

Three groups initially considered separately

Patient and carer data analysed together due to significant overlap

Health professional data analysed separately

Analysis

Patient and Carer Themes

Disease Progression

Realisation

Reaction Reality

Recognising future

challenges

Support

Supporting yourself

The support network

Realisation

P008: I knew over time because I couldn’t walk as far as I used to, just slowed down a bit, so I knew it was happening, I was well aware of it really.

P013: Then I go to my next appointment, and I have this [clinic letter] from that appointment. I nearly froze in my boots when I read it. Secondary progressive multiple sclerosis.They never told me I had that. So that was very shocking.

ReactionP038: …he [neurologist] said I don’t

need to see you anyway, and you don’t need to have annual MRIs and you don’t need to see the nurse every month, you

can see the nurse every 3 months perhaps. And I thought okay, so I have been shunted into this other group now all of a sudden. I don’t know why. No-

one has told me why.P044: I suppose at my stage it doesn’t really matter whether I am relapsing remitting or

secondary progressive I suppose…it is what it is sort of thing. And I’ve

learnt to manage it as best I can.

A gradual personal realisation may occur before discussion takes place

Appears to be facilitated by prior knowledge of the likely disease course

A more sudden realisation may cause a more marked emotional reaction

A lack of understanding about how the ‘diagnosis’ is made heightens confusion

Examining realisation and reaction

RealityC017: If it was one thing, if

it was her legs or if it was neuralgia or if it was not being able to get out.

But it’s the whole sweep of it, it’s the spectrum of it

P006: Well in the beginning you feel like you’ve been thrown on the waste, you know the tip, to be truthful, because I am of an age where I had the work

ethic drilled into me

Recognising future challenges

C017: it’s like living your life with a weight on your back all the time, we

can’t do, we can’t plan anything, because we don’t know what it’s

going to be like tomorrow

PO18: …with the future I try not to think about it. I do think “Oh God, I just want to be able to walk.” I think if I was in a wheelchair all the time

and couldn’t walk and it’s taken that other little bit of independence from me, I don’t know what, I don’t want

to cope like that

The support network

Person with MS

supporting herself

The patient-carer

relationship

The people around you

Healthcare Experiences

Peer support

Supporting yourself

P006: …I do a lot of yoga. So that keeps me sort of mobile. It keeps

what I’ve got going, going. It’s important to keep what you’ve got

P023: …it can get to me but I’ve decided not to fight it.

Just to swing with it, climb over fences, and adapt to it as far as I

can. And not let it beat me

Healthcare experiencesC028: We only tend to ring her [MS

nurse] when it’s important. We appreciate how busy she is and how

understaffed they are, but I’d say this; when she does come back to

you, she gives you 100 percentP13: I walk up and

down the corridor for so many minutes and they

watch that. I don’t understand what I’m meant to do with that

when I go home

P022: when you are first diagnosed you get a lot of help, afterwards you just

get left alone, nobody does anything and you have to

keep going on and on saying I want this, I want

this

Health professional themes

The transition

Recognition

Discussion

Impact

Professional educational preferences

Providing Support

Personal challenge

s

Working with others

Service constraints

Supporting carers

Recognition

HP33: it takes a while to know for definite if they are

in transition (nursing) HP014: I think most of us don’t mention it when you first think they’re probably transient, you probably wait a bit, until you’re

sure that they are, which may be a bit late. And that’s part of our

anxiety I think about the uncertainty, because we can’t stick them in the MRI scanner

and have a result from [radiologist] saying this person is

now progressive (medical)

HP035: maybe as healthcare

professionals we don’t want to accept that conditions change

(nursing)

Impact

HP026: what I see in clinic is, like, a shrug of the shoulders or, ‘it is what it is’, so there’s kind

of that resignation to that (allied professional)

HP035: I think patients don’t understand necessarily that relapsing and remitting MS is likely to change into secondary progressive MS and I

think they have quite a difficult transition period because they, for want of a better word and I put it in

inverted commas, they “panic” (nursing)

Discussion

HP014: I think it is very difficult when someone is

relapsing to talk the sort of doom and gloom (medical)

HP033: I don’t suppose we

prepare them (nursing)

HP032: it’s trying to word it without frightening them, I know that like

the booklets [say] “they accumulate disability slowly over time,” well that sounds good, but

not when you’re trying to tell someone that (nursing)

HP34: Yeah it forces me to be a bit more kind of honest with patients because I

know they are going to get the exact

clinical letter (medical)

Educational needs

HP34: You still need your part scientific evidence as well as

“this is what I did and it seemed to work”

(medical)

HP015: I think it is really good to co-

work with people, I think you learn a lot (allied professional)

HP41: I think it’s harder to motivate yourself, to say for this half hour, I’m gonna do that e-learning, the phone rings, you’ve

got something else that needs doing, whereas if you go to training, you’re there and nothing else can happen …so for me, I

much prefer face to face(allied professional)

Personal challenges

HP034: as a doctor you feel if you offer them a

tablet then somehow that helps you feel better at least

(medical)

HP009: some people you can sort of keep on

about things, you need to do this, and you need to do this, and it is

like hitting a brick wall

(allied professional)

HP015: I probably ought

to signpost people more

instead of doing it all

myself (allied

professional)

Working with others

HP014: I don’t think you can do it on your own. If it’s just me in a clinic on my own it wouldn’t work. I need the nursing staff,

and the OT and the physio (medical)

HP40: I think it is very easy to just say go and talk

to an MS nurse about it. Having said that, at the MS team often they are much

more in tune with their particular type of patient, so you could argue that

they might provide a better service than the GP anyway

(medical)

Service constraints

HP014: So I think it would have to be a bit more

flexible, so you’d have to have it at a place they can get to, at times for

someone who is working, especially for the transitional phase

(medical)

HP40: … it’s hugely limited in terms of counselling

support (medical)

HP009: …so they do like a monthly Parkinson’s day in the day hospitals. There isn’t that for MS and I think that would pay dividends. Cos you would be able to keep

an eye on people and just support them as they go along. But we can’t offer that here

(allied professional)

Breakout activity

Recognising and discussing the transition

◦ How do you do it now?

◦ Who is involved?

◦ What works well and what doesn’t?

◦ How could it be done better in your service?

◦ What would you like to change?

Activity A

Promoting patient engagement with self-management

◦ What strategies have you used in the past to encourage patients to become more engaged in managing their own health?

◦ What works well?

◦ What should be avoided?

◦ Your top tip for others?

Activity B

Breakout activity feedback

What could help patients

What could help carers

What could help clinicians

Our suggestions

Information on how SPMS is confirmed, what it means for them and what they can do now

Tools to help them get the most out of their appointments

A range of information and support services to allow patient choice

Help to keep active

A directory of local services

What could help patients?

Recognition carers’ information needs do not always coincide with patients’ information needs and they may not ask for help

Opportunities to access information and support when they need it

Knowledge of how support someone with invisible symptoms (fatigue, cognition, personality change)

What could help carers?

Symptom specific management advice for dealing with symptoms ‘without solutions’

Communication skills in assessing patient information needs and breaking bad news

Self-management support training

Strategies for providing psychological support

Professional educational needs?

Protected time to learn Tailored to meet personal learning needs Multi-disciplinary in nature

A combination of interventions : ◦ Knowledge based interventions – reading, e-

learning, small group work, case discussions.

◦ Skills based interventions – hands-on workshops

◦ Reflective practice– case discussions, mentoring.

Formatting educational interventions?

Facilitate continuity of care

Provide a range of support services to increase flexibility and patient choice

Provide simple high-quality reliable sources of information

Increase availability of psychological support

Service recommendations

Thanks to all the patients, carers and health professionals who participated in the study

Study advisory group members Fiona Wood, Cardiff University Neil Robertson, Professor of Neurology, C&V UHB Rhiannon Jones, MS Specialist Nurse, C&V UHB Gayle Sheppard, Data Manager, C&V UHB Kate Brain, Cardiff University Rachel Wallbank, Specialist OT, C&V UHB Michelle Edwards, Swansea University Barbara Stensland, Patient Representative Rebecca Pearce, MS Society Tracy Nicholson, MS Trust

Acknowledgements

Please give us your feedback

1. Katz-Sand I, Krieger S, Farrell C, Miller AE. Diagnostic uncertainty during the transition to secondary progressive multiple sclerosis. Mult Scler. 2014. Feb 3. [Epub ahead of print]

2. Deibel F, Edwards M, Edwards, A. (2013). Patients’, carers’ and providers’ experiences and requirements for support in self-management of multiple sclerosis: a qualitative study. European Journal for Person Centered Healthcare, 1(2), 457-467.

3. Methley A, Chew-Graham C, Campbell S, Cheraghi-Sohi S. Experiences of UK health-care services for people with Multiple Sclerosis: a systematic narrative review. Health Expect. 2014. Jul 2. doi: 10.1111/hex.12228. [Epub ahead of print]

4. Moore P, Harding KE, Clarkson H, Pickersgill TP, Wardle M, Robertson NP. Demographic and clinical factors associated with changes in employment in multiple sclerosis. Mult Scler. 2013;19(12):1647-54.

5. Harding KE, Liang K, Cossburn MD, Ingram G, Hirst CL, Pickersgill TP, et al. Long-term outcome of paediatric-onset multiple sclerosis: a population-based study. J Neurol Neurosurg Psychiatry. 2013;84(2):141-7.

References

Thank you