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This presentation by Jeremy Chataway and Susan Hourihan from the National Hospital of Neurology and Neurosurgery provides an overview of how to identify the transition to secondary progressive MS and ...

This presentation by Jeremy Chataway and Susan Hourihan from the National Hospital of Neurology and Neurosurgery provides an overview of how to identify the transition to secondary progressive MS and how to assist people with MS in the transition stage.

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Transition to secondary progressive MS Transition to secondary progressive MS Presentation Transcript

  • Transition to secondary progressive MS Jeremy Chataway Susan Hourihan National Hospital of Neurology and Neurosurgery, UCLH 1
  • 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
  • Golden era for RRMS
  • Reducing relapse rate: pivotal work
  • Fingolimod Kappos: NEJM Feb 4 2010 N=1272
  • But a mountain still to climb Gasherbrum IV
  • What is progression?
  • What is progression?
  • The progression
  • In MS? - Say walking Primary/Secondary
  • 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!
  • 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
  • SPMS pathology Demyelination Neuronal/ Axonal loss Gliosis Trapp Lancet Neurology 2009
  • Mechanisms  Oligodendrocyte loss/demyelination  Energy failure  Reactive oxygen/nitric oxide species  Excitotoxicity
  • Transition to SPMS 16
  • Importance of Transition to SPMS Conversion to secondary progressive (SP) MS is the key determinant of long-term prognosis (Scalfari, et al 2011) 17
  • 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
  • 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
  • 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
  • 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
  • Emotional Reactions          Resistance to further treatment Frustration Despair Fear Guilt Embarrassment Grief Anger Anxiety 22
  • 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
  • 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
  • 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
  • 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
  • Urgent need for research An international collaborative statement recently urged for a concerted effort for research into progressive MS (Fox et al., 2012). 27
  • Developing a clinical service for Transition to SPMS National Hospital of Neurology and Neurosurgery, UCLH 28
  • Re-thinking a clinical service Clinical Service One route of care fits all 29
  • Clinical Service Separate routes according to need 30
  • Multiple Sclerosis Disease Trajectory Newly diagnosed Minimal impairment Moderate disability Severe disability 31
  • 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
  • Multiple Sclerosis Disease Trajectory Newly diagnosed Minimal impairment Moderate disability Severe disability 33
  • 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
  • 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
  • Referrals   From MS consultants, GPs, Neurologists, MS CNS, Therapists Criteria:  Confirmed past Dx of RRMS  Recent transition to SPMS 36
  • Pre-clinic Prior to clinic patients are sent: pre-clinic questionnaire MSIS-29 EQ5D5L 37
  • 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
  • Structure of Clinic (continued)   Transparent team clinical reasoning collaboratively with patients Plan formulated and written in the clinic 39
  • Common priorities      Mobility Work Leisure Mood (depression and anxiety) Thinking skills 40
  • Common outcomes 41
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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
  • 5 Themes 50
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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
  • Coping • • • Self management strategies of fighting for benefits and treatment Positive thought Searching for safe peer support 58
  • 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
  • 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
  • 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
  • Case Study 62
  • 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
  • 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
  • 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
  • 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
  • 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
  • From patient viewpoint, main three problems 1. 2. 3. Walking Balance Stiffness in lower limbs 68
  • 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
  • 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
  • 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
  • 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
  • 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.
  • 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