Presentation of COAP study results


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This is a presentation of the results of the Care of Ataxia Patients (COAP) study, given by Dr Gavin Daker-White at the COAP study day in Manchester on 18 November 2011. It gives the views of neurophysiotherapists and patients with ataxia about the care of people with ataxia in the Greater Manchester region.

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Presentation of COAP study results

  1. 1. Views of neuro physios and people with ataxia about Physiotherapy in progressive ataxiaGavin Daker-White1, Caroline Sanders1, KatherinePayne1, Julie Greenfield2, Helen Kingston3, KrystleKontoh4, and John Ealing51 University of Manchester; 2 Ataxia UK; 3 ClinicalGenetics, CMFT; 4 Genetic Alliance; 5 Neurology, SRFT
  2. 2. Summary• Aims of this presentation• Background – The Care of Ataxia Patients Study• Overview of preliminary results from COAP• The views of neuro physios derived fromqualitative interviews  Methods / Sample  The main problems faced by people with ataxia  What can or can‟t be done?  Expectations and outcomes  Other issues• The views of patients
  3. 3. caveat emptor The focus of this presentation is on the views andexperiences of individual neurological physiotherapists who have worked with people with ataxia The purpose of this presentation is not to recommendparticular treatments. The findings of this study cannot be used to suggest „what works.‟ That would require properly validated studies of patient outcomesThere is a lack of evidence in this field (more about that in Anita Watson‟s session this afternoon)
  4. 4. Components of the COAP study• Qualitative interviews with 38 people with ataxia in Northwest England• Qualitative interviews with 25 health professionals, including 8 neurological physiotherapists and 10 consultant neurologists• A national survey of health professionals (in progress)• A health economics study of NHS resource use by people with ataxia• An examination of care pathways in ataxia as compared with Ataxia UK‟s „best practice‟ guidelines
  5. 5. Patient Interviews: main themes• The problems with an ataxia diagnosis (rare, untreatable) especially when „idiopathic‟ = Prognostic uncertainties• The stigma of appearing or sounding drunk• Although physiotherapy / physiotherapists were mentioned in some of these interviews, this was not a focus of the discussions• There was a wide variability in terms of who had seen a physiotherapist and whether physiotherapy was viewed as helpful or not
  6. 6. Neurologist interviews: main themes• The diagnostic pathway• Involvement usually ends following the diagnosis process (but not in ataxia specialists)• The costs and yield of different diagnostic tests• Different levels of diagnosis – definitive versus „black box‟ diagnosis of ataxia• Physiotherapy was commonly viewed as one of the few management options available for patients, although a minority of neurologists were sceptical that anything could be done
  7. 7. The views of Neuro Physios“I‟m a physiotherapist. I don‟t cure people. I help them deal with the situation they‟re in” (P3: 12: 233-234)
  8. 8. Methods - Recruitment• Initially unsolicited recruitment emails were sent to physiotherapy departments, neuro-rehab units & community neuro-rehab teams• Only 2 interviewees were recruited by this route• Further invitations were sent out via Ataxia UK to NW-based professional members. Others were recruited by word of mouth.
  9. 9. The sample• 2 x academic physiotherapists, research active in neuro-physio• 1 x specialist neuro physio based in an NHS outpatient physiotherapy department• 1 x specialist neuro physio, private practice• 2 x physiotherapists working in community neuro-rehab teams• 1 x physiotherapist working in an in-patient neuro-rehab unit (non-stroke)• 1 x physiotherapist working in a private inpatient unit (brain injury)
  10. 10. The interview schedule• Can you tell me about your role and what experience you have had in looking after people with ataxia?• What are the main problems faced by people with ataxia?• What treatments and/or management options are you able to offer people with ataxia?• Can you give examples (without personal identifiers) of what you do for patients with ataxia
  11. 11. Results – Experience of working with people with a progressive ataxia• Those in in-patient settings had little experience: one had seen one person with a progressive ataxia (FA) in 11 years; one had not seen any progressive ataxia cases, but had seen a patient with a cerebellar tumour• Others most commonly reported seeing “one or two” people with progressive ataxia per year
  12. 12. “Quite a lot of people are sort of, a bit scared of seeing ataxic patients, they‟re not quite sure what to do with them”. . . “I think, oh God, I can‟t make a difference here.” (P2: 10: 169-181 & 13: 205-206)
  13. 13. The main problems faced by people with progressive ataxia• Safety / Falls• “Postural control and coordination problems” (P2: 27: 406-427)• Weakness in core muscles (P5: 22: 362-364)• Problems with core stability and locus of control (P3:20: 458-459)• Compensatory strategies: “They‟ll really overuse a lot of their peripheral superficial muscles to stop themselves shaking” (P2: 16: 246-253)
  14. 14. • “Their reference points are lost. So . . . their feed- forward and feed-backwards mechanisms coming from [the] cerebellum have been interrupted.” (P3: 7: 121- 132)• “When you get a diagnosis like that and you‟re told there‟s no cure, what are you going to do? Sit in a chair? And then what about all the other parts of your nervous system that then just get disused?” (P3: 31: 842-845)• Many physiotherapists talked about needing to know what the underlying problems are for each individual patient. For example, if fatigue is a central part of their pathology, vigorous exercise is going to make it worse (in P1: 23: 200-213)
  15. 15. What can’t be done?• People with „pure‟ cerebellar syndromes were characterised as a hard to treat group. They were often contrasted with those with ataxia as a result of stroke or MS, who were seen as easier to treat• “Ive got a hand full of patients where no matter what we do . . . the ataxia doesnt change. And its often . . . something that gets worse the more they think about it, and the more theyre being watched and the more theyre being analysed as well. So we do have to take that into account when were treating and assessing patients. If theyre put under pressure to perform, the ataxia sometimes [gets worse].” (P2: 14: 205-212)
  16. 16. • “As a physio [you] need to see results. If they are not improving then there‟s nothing you can do for them . . . I‟ve seen him three or four times and I‟m thinking, well, you‟re not reporting any improvements or any changes in the treatment, so I have to, I have to question what I am achieving here” (P4: 9: 242-256 & 19: 633-636).• “It‟s really hard to measure improvement” (P5: 10: 162)
  17. 17. What can be done?• “My job is to improve their quality of life” (P3: 27: 725- 728; P4: 5: 125-134)• Preventing deterioration (P7: 9: 563-584)• “It‟s about stopping them sliding down the hill . . . and putting the brakes on as much as we possibly can, but unfortunately that‟s not sexy at the moment” (P3: 35: 948-951)• “If they really limit their activities because they‟re really worried about falling over, then they‟re going to get the associated muscle weakness that you‟d get with inactivity so in that sense to me there might be some potential for people to improve.” (P5: 12: 170-174)
  18. 18. Goal setting with the patient• “It‟s about getting the patients to take ownership for their problems” rather than about “what you do to the patient” (P4: 13: 292-316, extracts)• “So if I see a patient I‟ll say, „Right what are your goals; what are your expectations for physio?‟ If they say to me, „I want to walk normally,‟ I say, „Well that‟s not a very realistic goal. So what are your main problems?‟ „I want to be able to walk to the car.‟ Okay. So looking at the patient and . . . decide well is that a reasonable goal or not? (P4: 18: 617-628)
  19. 19. “I may be the only sort of, health professionalthey have any contact with, so for that reason I trynot to lose them . . . To be honest, with somepatients it does turn into more of a counsellingsession, its not always hands on, Im justsomebody sat here that can listen to them. I maynot have any answers, but we can talk through,and then I can give some advice, makerecommendations, and make referrals onto other[services]. Sometimes that can be just as muchbenefit as me actually doing hands on treatment.”(P2: 27: 406-427)
  20. 20. Patient Expectations“ „Oh I don‟t really know why I‟ve been referred to youbecause there‟s nothing that anyone can do‟ . . . And Isaid, „Well hang on a minute, why don‟t we have a go?‟. . . And then in the end she agreed to do some physioand started to improve and got some benefits andabsolutely loved it . . . So she was really enthusiasticdespite having been told no there is nothing that can bedone about it. But on the other hand if patients are told,„Yes you‟ve got this condition. I can‟t help you, but thephysio might be able to improve things,‟ and they maywell come to us with completely unrealisticexpectations.” (P5: 19: 312-324)
  21. 21. Specific therapies mentioned• Resistance work to address core stability• Weight bearing exercises to increase stability• „Real world‟ exercises (e.g. in shops, supermarkets)• Counting strategies: cognitive override to make the movement smoother• “Explore the wobble” – learn to “unfix”• Pilates exercises – core stability• “Getting them in the water” (but safety concerns)• Bilateral walking poles (note not available on NHS)
  22. 22. Outcomes• “This particular problem may not get better and it‟s working with them to try and help them deal with it better.” (P2: 24: 345-350)• Linked to whether patients follow advice or not• “I suppose the ideal outcome is that they have a period of stability after they‟ve been seen by [the] service . . . So, I‟d want to know that they felt reasonably safe when we discharge them . . . I‟d want to know that they were coping and that they weren‟t having to kind of work to their maximum just to get through the day to do all the tedious menial things that everybody has to do.” (P5: 31: 774-804)
  23. 23. Measuring Outcomes• “The lady that I had some improvement with I measured her, how long she could stand without holding on for, so I timed it . . . And that told me that she‟d improved.”• Validated measures?
  24. 24. Patient views of physiotherapy• Physiotherapy was only mentioned in 21 / 38 (55%) interviews with people with ataxia• Of the 15/21 (71%) who expressed an opinion about physiotherapy in relation to their ataxia, 9/15 (60%) were positive or felt it had helped, whereas 6/15 (40%) were critical or expressed negative opinions
  25. 25. Patients’ Views of Physiotherapy
  26. 26. ‘Neutral’ views?• “The physiotherapist . . . a long time ago, said there was nothing they could do” (Pa10: 10: 140-145)• “I‟m trying to get help with physiotherapy for years and years” (Pa11: 15: 300-319)• “Nobody has ever told me” physiotherapy might help – only just found out (Pa2: 54: 973-981)• No time to do physio exercises, but still in demanding work and walks “miles” every day (Pa14: 23 & 30)• 2 patients were waiting to see a physio at the time of interview
  27. 27. Negative views• Physiotherapy did not help / make a difference (3 patients)• Critical of short course of treatment / exercise sheet model (3 patients): “Basically I‟ve just got to carry on doing what I do. The more I can do for myself the more I can keep mobile” (Pa36: 24: 538-650)
  28. 28. Positive views• “The physio has been absolutely wonderful” (Pa5: 26: 319-332)• “The most positive thing for me is the physiotherapy” (Pa12: 62: 1022-1029)• “The improvement with the physio is untold” (Pa13: 8: 258-279)• “The occupational and physiotherapist and the speech therapist . . . Is the most help I‟ve had” (Pa18: 11: 77-79) (Similar in Pa19: 593-634)• “I have an absolutely fantastic physio” [only patient to be seen continually for years] (Pa22: 33: 222-270)
  29. 29. Conclusions for practice• The difficulties in recruiting professionals might suggest that some people with progressive ataxia face difficulties accessing services. This was also reflected in the small number of patients who were not aware physiotherapy may have role• Managing patient expectations and goals seems to be of fundamental importance• Giving information, advice and support may be as important as „hands on‟ physiotherapy
  30. 30. Conclusions for research• This study tells us very little about what happens to patients when they progress to the extent that they need full-time care• Given that ataxia is an „umbrella‟ term, measuring and developing appropriate validated outcome measures appears challenging, especially given the small numbers of patients• We will have a fuller picture of what physiotherapists do in progressive ataxia when we analyze the results of our national survey (c. 200 respondents)
  31. 31. This presentation presents independent research commissioned by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0807-13181). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.