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Assessment of pain and its management in people with locked-in syndrome: preliminary data

Séverine Blandiaux1, 2, 3*, Véronique Blandin4, Olivia Gosseries1, 2, 3, Steven Laureys1, 2, 3, Marie-Elisabeth Faymonville5, 6 and Audrey Vanhaudenhuyse5, 6
  • 1 Université de Liège, Belgium
  • 2 Coma Science Group, University of Liège, Belgium
  • 3 GIGA Consciousness, University of Liège, Belgium
  • 4 ALIS Association des locked-in syndrome, France
  • 5 Service d'algologie, University Hospital of Liège, Belgium
  • 6 Sensation & Perception Research Group, GIGA-Consciousness, University hospital of Liege, Belgium

Introduction Pain is defined as an "unpleasant sensory and emotional experience associated with potential or actual tissue damage"[1]. It is a conscious subjective sensation that we should have all experienced. Nociception, in turn, refers to the "neural process of encoding nociceptive stimuli (translated and coded by nociceptors)"[2] and does not necessarily lead to pain. This difference is essential because it leads to many misunderstandings in everyday language and leads to different treatments also. Pain is thus a real clinical phenomenon to assess. As locked-in syndrome (LIS) is characterized by aphonia (or hypophonia) and quadriplegia (or quadriparesis) with a mode of communication by blinking or eyes movements [3], it turns out that we do not really know what pain is for people with LIS because it can be really challenging to communicate with them at first, as communication can be compromised. Methods The goals of this study were to determine if patients with LIS faced pain or discomfort, to distinguish between neuropathic pain[4] (i.e. resulting from somatosensory nervous system damage or disease)[5] and nociceptive pain (i.e. resulting from peripheral tissue damage)[6], to determine the consequences of the possible pain and discomfort in the everyday life of these patients and to propose non-pharmacological methods as treatment such as hypnosis or virtual reality for patients who suffer from pain, in order to possibly improve everyday quality of life of patients who may have difficulties to communicate and express their pain and discomfort. This study was proposed in the form of a structured questionnaire in French to all members of ALIS (Association des locked-in syndrome; https://www.alis-asso.fr/) with a LIS, by email, as well as to patients with a LIS in short stay hospitalization in CHU Liège whether or not they suffer from pain or discomfort. Patients were asked to express their acceptance to the consent form (according to the previously accepted ethics committee of the CHU Liège) before filling the questionnaire. The questionnaire includes demographic (such as gender and age), clinical (etiology, date of LIS,…) and quality of life data. The questionnaire is available in two versions, one “pencil-paper” version and one online version. Due to the specific constraint eyes-communication with these patients, we used several visual analogue scale (VAS)[7] in this questionnaire. Patients could fill the questionnaire alone or with another person to help them (family member, psychologist, physiotherapist, nurse,…). As preliminary data, we did preliminary statistical analysis such as descriptive statistics. Results Twenty-nine patients with a LIS responded to the questionnaire (see Table 1.) (mean age 47 ± 21, 18 women, mean duration of LIS: 13 years), from various etiologies (hemorrhagic stroke (3), ischemic stroke (19), traumatic brain injury (6), aneurysm rupture (1)). Sixteen patients were included because they reported current pain (i.e. present at least the last two weeks before responding to the questionnaire). Out of these 16 included patients (55%), 10 (62%) reported leg pain with an intensity of 8 on a VAS of 0 to 10. Typology of these 16 patients was a mean age of 45 years (± 20), 11 women, with a mean duration of LIS of 12 years. In 15 patients (94%), pain had been present for more than one year and was not present before the LIS in 13 patients (83%). Ten patients (62%) considered that the supine position aggravates the pain, while several other elements were also reported such as fatigue in 6 patients (38%), a sitting position in 5 patients (31%) and nursing/physiotherapy care for another 5 patients (31%). Note that 8 other patients (50%) reported that supine or sitting positions (4 patients - 25%) can also decrease pain. Pain had negative consequences on the capacity to concentrate for 11 patients (69%) and on the level of fatigue in 10 patients (63%) (see Table 2.). In 12 cases (75%), medication had been taken for pain (mainly paracetamol) several times a day. The efficiency had been described as middle (5 out of 10 on the scale). The non-pharmacological treatments used were mainly osteopathy with an effectiveness of 3 on a scale of 0 to 10 (4 patients - 25%). Finally, half of those surveyed would be willing to try a non-pharmacological treatment for pain such as hypnosis and virtual reality.   Conclusion and discussion Pain is a subjective notion that is sometimes difficult to clinically assess and the challenge of communicating with people with LIS can increase this difficulty. To our knowledge, this study is the first to attempt to identify painful experiences in people with LIS, as well as pharmacological or non-pharmacological strategies used to treat it. Our preliminary data show that more than half of patients with LIS suffer from pain and that also affects their daily lives (capacity of concentration, presence of fatigue). Moreover, the strategies put in place, whether pharmacological or not, seem to have only a limited impact on the feelings of these people. It is also important to emphasize that care and handling can be a source of pain and discomfort and must be taken in account. Due to the availability of the questionnaire only in French for these preliminary data, our sample of patients was restricted. We recently translated the questionnaire in English and will soon release it to English-speaking LIS people who would like to participate to this study.

Acknowledgements

University and University Hospital of Liege, FRS-FNRS, European Union’s Horizon 2020 Framework Programme for Research and Innovation Agreement 785907 (HBP SGA1), NeuroHealing Pharmaceuticals Inc., Luminous project (EU-H2020-fetopenga686764), Center-TBI project (FP7-HEALTH- 602150), Public Utility Foundation ‘Université Européenne du Travail’, “Fondazione Europea di Ricerca Biomedica”, Bial Foundation, European Space Agency, Mind Science Foundation, European Commission.

References

[1]. IASP, Press I. Classification of chronic pain: descriptions of chronic pain syndromes and definitions of pain terms. Vol. Suppl. Seatle; 1994. [2]. Naro A, Leo A, Cannavò A, Buda A, Bramanti P, Calabrò RS. Do unresponsive wakefulness syndrome patients feel pain? Role of laser-evoked potential-induced gamma-band oscillations in detecting cortical pain processing. Neuroscience. 2016;317:141–8. [3]. American Congress of Rehabilitation Medicine. Recommendations for use of uniform nomenclature pertinent to patients with severe alterations of consciousness. Arch. Phys. Med. Rehabil. 1995;76:205e9. [4]. Bouhassira, D., Attal, N., Fermanian, J., Alchaar, H., Gautron, M., Masquelier, E., ... & Boureau, F. (2004). Development and validation of the neuropathic pain symptom inventory. Pain, 108(3), 248-257. [5]. Jensen, T. S., Baron, R., Haanpää, M., Kalso, E., Loeser, J. D., Rice, A. S., & Treede, R. D. (2011). A new definition of neuropathic pain. Pain, 152(10), 2204-2205. [6]. Nicholson, B. (2006). Differential diagnosis: nociceptive and neuropathic pain. Am J Manag. Care, 12(9 Suppl), S256-62. [7]. Wood-Dauphinee SL, Opzoomer MA, Williams JI, et al. Assessment of global function: The Reintegration to Normal Living Index. Arch. Phys. Med. Rehabil. 1988;69:583e90.

Keywords: Locked-in syndrome (LIS), Quality of Life, Pain, Nociception, Hypnosis, virtual reality

Conference: Belgian Brain Congress 2018 — Belgian Brain Council, LIEGE, Belgium, 19 Oct - 19 Oct, 2018.

Presentation Type: e-posters

Topic: NOVEL STRATEGIES FOR NEUROLOGICAL AND MENTAL DISORDERS: SCIENTIFIC BASIS AND VALUE FOR PATIENT-CENTERED CARE

Citation: Blandiaux S, Blandin V, Gosseries O, Laureys S, Faymonville M and Vanhaudenhuyse A (2019). Assessment of pain and its management in people with locked-in syndrome: preliminary data. Front. Neurosci. Conference Abstract: Belgian Brain Congress 2018 — Belgian Brain Council. doi: 10.3389/conf.fnins.2018.95.00089

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Received: 31 Aug 2018; Published Online: 17 Jan 2019.

* Correspondence: PhD. Séverine Blandiaux, Université de Liège, Liège, Belgium, severine.blandiaux@uliege.be