ULIS (Upper Limb International Spasticity), a 10-year Odyssey: An international, multicentric, longitudinal cohort of person-centered spasticity management in real-life practice

Lynne Turner-Stokes; Klemens Fheodoroff; Jorge Jacinto; Pascal Maisonobe; Stephen Ashford

doi:10.4103/jisprm.jisprm_47_19

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Year : 2019 | Volume : 2 | Issue : 3 | Page : 138-150

ULIS (Upper Limb International Spasticity), a 10-year Odyssey: An international, multicentric, longitudinal cohort of person-centered spasticity management in real-life practice

Lynne Turner-Stokes¹, Klemens Fheodoroff², Jorge Jacinto³, Pascal Maisonobe⁴, Stephen Ashford⁵
¹ Department of Palliative Care, Policy and Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London; Regional Hyper-Acute Rehabilitation Unit, Northwick Park Hospital, London, UK
² Neurorehabilitation, Gailtal-Klinik, Hermagor, Austria
³ Centro de Medicina de Reabilitação de Alcoitão, Serviço de Reabilitação de adultos 3, Estoril, Portugal
⁴ Ipsen Pharma, Boulogne-Billancourt, France
⁵ Department of Palliative Care, Policy and Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London; Regional Hyper-Acute Rehabilitation Unit, Northwick Park Hospital; Centre for Nursing and Midwifery Research, University College London Hospital, London, UK

Correspondence Address:
Prof. Lynne Turner-Stokes
Regional Hyper-Acute Rehabilitation Unit, Northwick Park Hospital, Watford Road, Harrow, Middlesex, HA1 3UJ
UK

Source of Support: None, Conflict of Interest: None

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DOI: 10.4103/jisprm.jisprm_47_19

Homer's Odyssey, one of the major Greek epic poems, tells the story of the hero Odysseus (or Ulysses in Roman versions) and his journey home to his wife Penelope. An epic poem is a long, narrative poem that is usually about heroic deeds and events that are significant to the culture of the poet. In keeping with this classic storytelling style, we describe the journey that the Upper Limb International Spasticity Study (ULIS) program has taken. The program was started in 2008 and has encountered a number of trials and obstacles along the way. This article sets out the history of development through its 10-year “Odyssey.” We use the benefit of hindsight to discuss how conducting large-scale, international observational studies can inform and influence routine practice in an area as diverse and complex as spasticity rehabilitation. We focus on the clinical pearls found within the now extensive ULIS dataset and how continually building upon the insights from each study can provide a real impetus for change.

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