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TREATING PHANTOM LIMB PAIN FOLLOWING AMPUTATION the Potential Role of a Traditional and Teletreatment Approach to Mirror Therapy

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TREATING PHANTOM LIMB PAIN FOLLOWING AMPUTATION the Potential Role of a Traditional and Teletreatment Approach to Mirror Therapy TREATING PHANTOM LIMB PAIN FOLLOWING AMPUTATION The potential role of a traditional and teletreatment approach to mirror therapy ANDREAS ROTHGANGEL 2019 TREATING PHANTOM LIMB PAIN FOLLOWING AMPUTATION: The potential role of a traditional and teletreatment approach to mirror therapy The research presented in this thesis was conducted at: The School for Public Health and Primary Care (CAPHRI), Department of Rehabili- tation Medicine, Maastricht University. CAPHRI participates in the Netherlands School of Primary Care Research (CaRe), acknowledged by the Royal Dutch Academy of Science (KNAW). CAPHRI was classified as ‚excellent‘ by the external evaluation committee of leading international experts that reviewed CAPHRI in December 2010. TREATING PHANTOM LIMB PAIN FOLLOWING AMPUTATION: The potential role of a traditional and teletreatment approach to mirror therapy and The Research Centres “Autonomy and Participation of Persons with a Chronic Illness” and “Nutrition, Lifestyle and Exercise”, Faculty of PROEFSCHRIFT Health, Zuyd University of Applied Sciences, Heerlen, the Netherlands. The research presented in this thesis was funded by by the State of North Rhine-Westphalia (NRW, Germany) and the European Union ter verkrijging van de graad van doctor through the NRW Ziel2 Programme as a part of the European Regional Development Fund (grant no. 005-GW02-035) and by Zuyd University aan de Universiteit Maastricht, of Applied Sciences. op gezag van de Rector Magnificus, Prof. dr. Rianne M. Letschert volgens het besluit van het College van Decanen, The printing of this thesis was financially supported by the Scientific College Physical Therapy (WCF) of the Royal Dutch Society for Physical in het openbaar te verdedigen op Therapy (KNGF). dinsdag 25 juni 2019, om 10.00 uur © Andreas Rothgangel, Maastricht 2019 door All rights reserved. No parts of this thesis may be reproduced or transmitted in any form or by any means, without prior permission in writing by the author, or when appropriate, by the publishers of the publications. Andreas Rothgangel Art work: Matthias Reinhold ([email protected]) Lay-out: Carolin Trzaskowski Printed by: Gildeprint, Enschede ISBN: 9789463236973 Promotores Prof. dr. R.J.E.M. Smeets Prof. dr. A.J.H.M. Beurskens Co-promotor Dr. S.M. Braun Assessment committee Prof. dr. G.M. Rommers (chair) (Maastricht University) Prof. dr. J.W.S. Vlaeyen (Maastricht University, University of Leuven) Prof. dr. K. Horstmann (Maastricht University) Prof. dr. J.E.W.C. van Gemert-Pijnen (University of Twente, Enschede) Dr. U. Polak (German Social Accident Insurance (DGUV) Berlin, Germany) 6 7 IMAGINATION IS MORE IMPORTANT THAN KNOWLEDGE Albert Einstein CONTENTS CHAPTER 1 General Introduction 13 CHAPTER 6 Traditional and augmented reality mirror therapy for patients with chronic phantom limb pain 185 (PACT study): results of a three-group, multicentre single-blind randomized controlled trial CHAPTER 2 The clinical aspects of mirror therapy in rehabilitation: a systematic review of the literature 29 Clinical Rehabilitation, 2018;32(12):1591-1608. International Journal of Rehabilitation Research, 2011;34(1):1-13. CHAPTER 7 Feasibility of a traditional and teletreatment approach to mirror therapy in patients with phantom 223 CHAPTER 3 Development of a clinical framework for mirror therapy in patients with phantom limb pain: 61 limb pain: a process evaluation performed alongside a randomized controlled trial an evidence-based practice approach Clinical Rehabilitation, 2019; May Pain Practice, 2016;16(4):422-34. CHAPTER 8 General Discussion 261 CHAPTER 4 Design and development of a telerehabilitation platform for patients with phantom limb pain: 125 a user-centered approach Summary 287 Journal of Medical Internet Research Rehabilitation and Assistive Technologies, 2017;4(1):e2. Samenvatting 293 Zusammenfassung CHAPTER 5 The PACT trial: PAtient Centered Telerehabilitation: Effectiveness of software-supported and 155 301 traditional mirror therapy in patients with phantom limb pain following lower limb amputation: Valorisation 309 protocol of a multicentre randomised controlled trial Acknowledgements / Dankwoord / Danksagung 327 Journal of Physiotherapy, 2015;61(1):42. About the author 337 List of publications 341 10 11 CHAPTER 1 GENERAL INTRODUCTION One study7 reported that a large proportion (38.9%) of amputees experiences severe phantom limb pain defined as scoring a 7 or higher on GENERAL INTRODUCTION the 11-point Numeric Rating Scale. The occurrence of phantom limb pain seems not to depend on individual patient characteristics such as age, gender or level and side of amputation.10 Furthermore, there seems to be no relationship between the health status of amputees and the occurrence of phantom limb pain.10 Chronic pain affects one out of five adults in Europe1 and its prevalence increases with age.2 Chronic pain severely impairs patients’ in their In the majority (75%) of patients, phantom limb pain occurs within the first days after amputation.11-13 However, single cases are described daily lives. It is responsible for considerable limitations in work and quality of life and leads to a significant increase in healthcare costs.3, 4 in which the pain first appeared several years after the amputation.14 Regarding the duration of phantom limb pain one study suggested Chronic pain accompanies many different chronic conditions such as musculoskeletal disorders, which are amongst the 10 highest-ranking that phantom limb pain is decreasing over time,15 whereas another study showed no decrease or even an increase in phantom limb pain.13 conditions worldwide regarding the amount of years lived with disability.5 Furthermore, 7% of adults in the general population suffer from Several prospective studies showed that the majority of amputees suffers from phantom limb pain several years after the amputation. 10 severe chronic pain3 and another 7-10% have neuropathic pain caused by damage or disease affecting the somatosensory nervous system.6 A large survey in 400 amputees16 showed that almost half the patients (43.9%) perceived phantom limb pain more than 5 hours daily and 27.7% reported constant pain. Patients report that the pain appears especially in daily life situations when they come to rest such as reading, Phantom limb pain watching TV or sleeping: Within the group of patients with chronic neuropathic pain, phantom limb pain following amputation is frequent and affects up to 80% of amputees.7, 8 This pain is perceived in the entire or parts of the missing limb and varies in character from sharp, shooting pain to sensations similar to an electric shock or dull, squeezing or cramping forms as shown in figure 1.9 I am suffering from phantom limb pain since my accident 30 years ago. My phantom leg feels like a big clump and I often wake up at night because this clump starts cramping and stabbing. Then I am walking around and trying to relieve the pain by rubbing the stump or by increasing medication up to the maximum dose. However, with this amount of medication, I better stay in bed the next day. - Thomas, 52 years, patient representative PACT project Figure 1. Different types of phantom limb pain described by Kauko Solonen in 1962 Sensations in the phantom limb following amputation have first been medically described in the mid-16th century by French military surgeon Ambroise Paré,17 who observed that patients complained of severe pain in the missing limb. (‘The Phantom Phenomenon in Amputated Finnish War Veterans’ in: Acta Orthopaedica Scandinavica The American Neurologist Silas Weir Mitchell was the first to use the term ‘phantom limb’ and to describe different phantom limb sensations Vol. 33: sup 54 pp. 5-37 (1962). copyright ©Nordic Orthopaedic Federation, reprinted by permission 18 of Taylor & Francis Ltd) in more detail in the chapter “Neural Maladies of Stumps” of his famous textbook “Injuries of nerves and their consequences.“ 14 15 Interestingly, some of Mitchell’s observations described in 1872, e.g. the prevalence rate of phantom limb sensations such as telescoping, low to moderate33, 34 whereas costs are high. In this context, alternative, non- are still consistent with current scientific data.19 At the time, Mitchell published his observations on hundreds of amputees, phantom limb pharmacological interventions have gained increasing attention in the treatment pain and other sensations were regarded as mental hallucinations. However, over 100 years later, the view on phantom limb pain has not of phantom limb pain during the past years. These strategies range from hypnosis, much changed. A study20 from 1983 reported that only a small proportion of patients (17%) who discussed the phantom limb pain with their sensory discrimination training on the stump to residual limb liners made from doctor were offered treatment, and a large proportion were told that they were mentally disturbed. Similar results were reported in a study electromagnetic shielding fabric containing fine steal fibres.35, 36 A study by Lotze from 1997 by Wartan et al.,21 in which one third of patients reporting phantom pain to their doctor were told that their pain was imaginary and et al.28 suggested that frequent use of a myoelectric arm prosthesis also has either would go away without further treatment or never. Despite the fact that phantom limb pain has already been known for hundreds of beneficial effects on phantom limb pain. This suggestion is clinically confirmed by years and has a major impact on patients’ life, treatments achieving sustainable
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