Estudio de investigacion Centro Walton de Neurología y Neurocirugía de Liverpool


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Desarrollo y validación de medidas de auto-informe de la fatiga y las necesidades basadas en la calidad de vida en enfermedades neurológicas

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Estudio de investigacion Centro Walton de Neurología y Neurocirugía de Liverpool

  1. 1. AN EXPLORATION OF DIFFERENT COPINGSTRATEGIES EMPLOYED IN THE MANAGEMENT OF POST POLIO SYNDROME (PPS) Anne-Marie C Quincey, Samantha M-S Wong, Professor C Thomas & Professor Carolyn A Young (Walton Centre for Neurology and Neurosurgery NHS Foundation Trust, Liverpool) The UK Post Polio Study Group There were no conflicts of interest
  2. 2. Post-Polio Fatigue Very common complaint (Vasconcelos et al, 2006) Most troubling and debilitating symptom of PPS (Nollet et al, 1999; Olsen et al, 2007) Higher levels of fatigue in PPS cf healthy controls (Packer, Martins, Krefting & Brouwer, 1991; Packer, Sauriol & Brouwer, 1994) PPS patients with fatigue experience lower QoL cf healthy controls (On, Oncu, Atamaz, & Durmaz, 2006)
  3. 3. Impact of PPS New loss of function and new phase of disability Re-emergence of disease thought to be defeated Often additional difficulty in coping with day to day life including occupations, leisure/ social activities (Farbu et al, 2006; Nollet et al, 1999) Possible increased need for care and assistance (Grimby & Thorén-Jönsson, 1994; Kling, Persson & Gardulf, 2000) Can result in decrease in life satisfaction (Farbu et al, 2006)
  4. 4. Research aims Qualitatively explore the views of individuals with PPS To identify PPS specific themes/items for developing quantitative measures for PPS
  5. 5. Method Interviewed face to face and via telephone Semi-structured Prompts used as guide Typically lasted 45 minutes Interviews recorded, transcribed, and analysed thematically Transcripts coded systematically and independently Statements identified and then themes were agreed which items related to
  6. 6. Participants Volunteers satisfied diagnostic criteria for PPS 23 females and 22 males 5 receiving NIV Located in geographical regions all over the UK
  7. 7. Table 1: Characteristics of sample interviewedMales Diagnosis of PPS ≤ 1 year > 1 yearPolio- Onset 15-45 years 3 (7%) 6 (13%)of PPS fatigue > 45 years 4 (9%) 9 (20)%Females Diagnosis of PPS ≤ 1 year > 1 yearPolio- Onset 15-45 years 5 (11%) 6 (13%)of PPS fatigue > 45 years 5 (11%) 7 (16%)
  8. 8. Coping strategies Respondents talked about attempts to maximise control and autonomy in the face of PPS Coping strategies reported as essential given impact PPS can have Unpredictable manifestations and progression of PPS
  9. 9. Findings 45 interviews conducted Continued interviewing until saturation was achieved Participants could generally be categorised as adopting sedentary-focused or active-focused coping strategies for fatigue In this study, more participants appeared to adopt sedentary-focused coping
  10. 10. Pictorial RepresentationActive focused Sedentary focused coping styles coping styles
  11. 11. Table 2: Differing coping styles utilisedSedentary- focused coping Active- focused coping Avoid excess activity Physical exercise regimes Tendency to rest, pace & Tendency to overexert adapt environment “Conserve it or lose it” “Use it or lose it” beliefs beliefsMore likely to accept help Less likely to accept help
  12. 12. Active-focused coping style Adopted exercise regimes but described benefit as a sense of achievement rather than symptom improvement Typical saying taught during rehabilitation of polio at childhood was ‘use it or lose it’ (Kaufert & Locker, 1990) Opposite to what is recommended for PPS management- conserve energy and limit overactivity Similarly, upbringing e.g. treatment from parents, affected personality and attitudes towards activity Children growing up with physical disabilities often built- up strong personalities, resilience, led an active life and are used to giving their very best to be “normal” (Yelnik & Laffont, 2009)
  13. 13. Quotes to exemplifySense of achievement after exercising: “I feel as though I have accomplished something and I feel better in myself for it” (Thomas, aged 59)Tendency to keep active: “you tend to cope better rather when you’re doing nothing and sit on the settee” (William, aged 68)
  14. 14.  Influence of upbringing: “I have to say that your parents are the ones that really set you up. Because my mother never ever told me I was disabled. She never ever accepted that I couldn’t do things, and I had to behave and do exactly the same as my sister” (Karen, aged 67) Resilient personality: “The fact is when you’ve had polio from an early age, you grow up with this feeling that you have to push yourself, and be as independent as possible. People that are around me, they are completely unaware that I feel tired to the extent I do, or limited to the extent I do - because I don’t discuss it with them” (Marion, aged 58)
  15. 15. Sedentary-focused coping style Adapted to condition more and changed some of their attitudes e.g. talked about accepting their condition, more likely to rest and pace effectively, more likely to have adapted surroundings to make life easier and comfortable in seeking or accepting help from others See condition as more controllable if pacing was carried out effectively, but acknowledged the condition likely to get worse over the years Tend to avoid excess activity by “knowing the limits their own bodies” and hence experienced fewer “fatigue and pain symptoms” from activity
  16. 16. Quotes to exemplify Pacing through activities: “What I do now is try to do a little each day, rather than trying to get it all done at once” (Kevin, aged 52) Advanced planning involving prophylactic rest: “If I know I’m going to have to do something, then I have to make sure a couple of days before I do absolutely nothing, and try and build up some energy if I can” (Doris, aged 63) Relaxation and using assistive devices: “If you know you have something big on some day… *I’ll+ have a little rest for half an hour to an hour, and I’ve also got a ventilator that I use through the night every night. It’s on all night, and it gives me a boost to help me in the morning… I can take a few breaths of air and it sort of stretches my lungs a little bit” (Margaret, aged 74)
  17. 17.  Acknowledging condition likely to deteriorate: “I can’t see it carrying on and this is the way it’s going to be, because as I say the way I feel is just all gradually worse” (Derek, aged 54) Improvising, i.e. altering or adapting an activity/task to make it more manageable: “I’ve tried to improvise, I want to carry on doing it - but I’m trying to improvise to reduce the amount of pulling I do you know” (Edward, aged 68)
  18. 18.  Accepting support from friends and family: “My friends are understanding too, I mean they know my limits” (Emily, aged 64) Coping strategies could also be learnt from others in a similar situation, especially through membership of the British Polio Fellowship; and positive attitudes could arise from sharing experiences and socialising: “We know quite a few people with Polio (from BPF) we socialise with them.. we have days out and things like that, you know, and it’s something to look forward to” (Derek, aged 54)
  19. 19. Stoicism Benefit of an accepting mindset and stoicism in the face of misfortune found to help some participants to stay positive: “I think it’s just what’s mapped out for me, so I’ll have to get on with it, you know” (Edward, ages 68) “Whatever life throws at you, you just battle forward” (Joan, aged 67)
  20. 20. Limitations How representative is our sample? PPS patients may have responded differently depending on whether they were interviewed by telephone or face-to-face: strengths and weaknesses of each method
  21. 21. Conclusion Condition had a profound impact on interviewee’s lives Coping strategies therefore often employed Two different models for coping with PPS emerged, which had both positive and negative impacts on activity, self confidence, independence and fatigue Further work may help healthcare providers to target particular beliefs or expectations that may influence an individual’s coping capacity in PPS Items were derived from these interviews to comprise a PPS specific self report measure and this is currently being validated in a PPS population
  22. 22. Acknowledgements Many thanks to Professor Carolyn A. Young and Samantha Wong (Walton Centre for Neurology and Neurosurgery, Liverpool, UK) for their time, efforts and valuable contributions to this project. We are also extremely grateful to the British Polio Fellowship (BPF) for their generous funding of this research, enabling us to conduct the project.
  23. 23. References Farbu, E., Gilhus, N. E., Barnes, M. P., Borg, K.,de Visser, M., Driessen, A., Howard, R., Nollet, F., Oparh. J., and Stalberg, E. (2006). EFNS guideline on diagnosis and management of post-polio syndrome: Report of an EFNS task force. European Journal of Neurology, 13, 795–801. Grimby, G., and Thorén-Jönsson, A. L. (1994). Disability in Poliomyelitis Sequelae. Physical Therapy, 74 (5), 415- 424 Halstead, L. S., & Rossi, C. D. (1985). New problems in old polio patients: results of a survey of 539 polio survivors. Orthopedics , 8, 845 - 850. Kaufert, J. M., & Locker, D. (1990). Rehabilitation ideology and respiratory support technology. Social Science & Medicine , 30, 867 - 877. Kling, C., Persson, A., and Gardulf, A. (2000). The health-related quality of life of patients suffering from the late effects of polio (post polio). Journal of Advanced Nursing, 32 (1), 164-173 Nollet, F., Beelen, A., Prins, M. H., Visser, M., Sargeant, A. J., Lankhorst, G. J., et al. (1999). Disability and functional assessment in former polio patients with and without postpolio syndrome. Archives of Physical Medicine and Rehabilitation , 80 (2), 136 - 143. Olsen, C. H., Vo, A. H., Dalakas, M. C., Halstead, L. S., Jabbari, B., Campbell, W., et al. (2007). Modafinil for treatment of fatigue in post-polio syndrome: A randomized controlled trial. Neurology , 68 (9), 1680 - 1686. On, A. Y., Oncu, J., Atamaz, F., & Durmaz, B. (2006). Impact of post-polio-related fatigue on quality of life. Journal of Rehabilitation Medicine , 38 (5), 329 - 332. Packer, T. L., Martins, I., Krefting, L., & Brouwer, B. (1991). Activity and postpolio fatigue. Orthopedics , 14, 1223 - 1226. Packer, T. L., Sauriol, A., & Brouwer, B. (1994). Fatigue secondary to chronic illness: postpolio syndrome, chronic fatigue syndrome, and multiple sclerosis. Archives of Physical Medicine and Rehabilitation , 75, 1122 - 1126. Vasconcelos, O. M., Prokhorenko, O. A., Kelley, K. F., Vo, A. H., Olsen, C. H., Dalakas, M. C., et al. (2006). A Comparison of Fatigue Scales in Postpoliomyelitis Syndrome. Archives of Physical Medicine and Rehabilitation , 87, 1213 - 1217. Yelnik, A., & Laffont, I. (2010). The psychological aspects of polio survivors through their life experience. Annals of Physical Rehabilitation Medicine , 53, 60-67.