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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
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
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)
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
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
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.
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