- Email: [email protected]
P7. Importance of mobility for quality of life in patients with multiple sclerosis
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Society Proceedings / Clinical Neurophysiology 123 (2012) e101–e114
P6. Leg movements during sleep in patients with obstructive sleep apnea—S. Fulda a, I. Rusakova a, R. Ferri b, C.L. Bassetti a, I. Pisarenco a, E. Colamartino a, M. Manconi a (a Sleep and Epilepsy Center, Neurocenter of Southern Switzerland, Civic Hospital (EOC) of Lugano, Lugano, Switzerland, b Sleep Research Centre, Department of Neurology I.C., Oasi Institute (IRCCS), Troina, Italy) Introduction: Leg movements (LMs) during sleep are frequent in patients with obstructive sleep apnea syndrome (OSAS). Current giudelines distinguish LMs associated with respiratory events from periodic leg movements (PLM), excluding the former when assessing PLM. The aim of the current study was to describe the time structure of global LMs, the relationship between PLM and respiratory related movements (RRM), and the relationship between RRMs and the main respiratory parameters in patients with OSAS. Methods: Retrospective chart review of all patients visiting the sleep lab of the Sleep and Epilepsy Center of the Neurocenter of Southern Switzerland between January 2010 and July 2011, which (1) had undergone full polysomnographic recording, (2) were between 18 and 75 years, (3) had an apnea-hypopnea index >20 and oxygen desaturation index >10 with more than half of all apneas being obstructive and (4) had >15 LMs/h (leg movements index (LMI)). We excluded patients with (1) any medical condition, that could influence LMs or apnea (such as narcolepsy, parasomnias, neurological disorders, renal or heart failure), (2) medication known or suspected to affect LMs (e.g. dopaminergic, benzodiazepines, antidepressants, etc.) and (3) recordings with artefacts of tibialis anterior or flow for more than 20% of the total sleep time. All LMs were scored and classifed as RRM, PLM, or isolated LMs according to WASM-IRLSSG criteria (2006). Intermovement intervals of LMs were analysed with distribution mixture analysis and differences between subjects with and without respiratory-related LMs were explored with non-parameteric tests. Results: Fifty six patients have been included (8F 48 M, 56 ± 12 years). Distribution mixture analysis of intermovement intervals (IMI) of all LMs identified 3 classes of LMs which could be distinguished based on their peak frequencies (Fig. 1). These were around 5 s, 20 s, and 40 s. The latter class (IMIs 40 s) could be traced back to the respiratory-related LMs, while the 20 s peak corresponds to periodic LMs, also found in patients with restless legs syndrome (RLS). LMs with very short IMIs (5 s) are related to wakefullness and arousal. Within the total group, 10 patients had no respiratory LMs (<1/h). Comparison between patients with and without respiratory LMs revealed more severe apnea (higher AHI, ODI), more disturbed sleep (longer sleep latency, more frequent awakenings), and more periodic and non-periodic LMs in patients with respiratory LMs.
Conclusions: Our preliminary results show that respiratory LMs can be distinguished from periodic LMs based on their time structure (IMI). Importantly, respiratory LMs are found predominantly in patients with periodic LMs suggesting a possible shared trait for increased motor activity during sleep. The time structure analysis of LMs may be able provide information on the pathogenesis and meaning of LMs in OSAS patients and might explain the different response of LMs to ventilatory treatment. doi:10.1016/j.clinph.2012.03.056
P7. Importance of mobility for quality of life in patients with multiple sclerosis—C. Vaney a, A. Bienz b, R. Zwicky b, M. Gerber c, M. Traber a (a Center for Medical and Neurological Rehabilitation, Crans-Montana, Switzerland, b Biogen Idec Switzerland AG, Zug, Switzerland, c GEM Clinical Research Consulting, Unterägeri, Switzerland) Introduction: Clinical trials indicate that disease-modifying therapies (DMT) are effective in reducing disease activity and may slow disease progression (Freedman, 2011). Patients judge gait and visual functions as the most valuable (Heesen et al., 2008). The present work explored the impact of patient’s mobility, especially difficulties in walking, as a factor influencing quality of life (QoL) from the perspective of physicians (HCPs). Methods: Between March and July 2011 a survey was conducted amongst 40 Swiss HCPs. The objective was to gain insight on symptoms most frequently reported, impact of walking impairment on QoL, assessment tools, treatment options used, follow-up and monitoring over time. Results: Walking impairment was considered important/very important by 98% HCPs. Regarding the type of walking impairment, the ‘lack of coordination/balance’ was reported most frequently and 14 times as 1st intervention. The impact of walking impairment on the ability to work was considered important/very important by 83% of HCPs, on social contacts by 75% and on family life by 73%. Walking impairment was reported through HCPs observation in 36 cases and through asking by HCP in 24 cases but primary reporting by the patient in 19 cases. The most frequently used tool to assess walking impairment was EDSS reported by 93% of HCPs. Physiotherapy was the most frequent help for walking impairment and was reported 38 times, in 53% as 1st priority. The involvement of physiotherapist was considered important/very important by 78% of HCPs. New treatment options were considered to be important/very important by 83% of HCPs. Forty three percentage of HCPs were not aware of new drugs for patients with walking impairment. Conclusions: The majority of Swiss HCPs have an awareness of walking impairment – most often reported as ‘lack of coordination/balance’ – as a primary concern. It impacts on the ability to work, affects social contacts and family life and consequently QoL. However, as patients raised this issue in nearly 50% of the cases, assessing walking impairment on a systematic basis does not occur in clinical practice. Walking impairment was assessed with EDSS, which is not easily performed. As drugs for patients with walking impairment are in development, it raises the need for tests such as Timed 25-Foot Walk (Coleman et al., 2012) in clinical practice especially as it is validated and simple to apply. References
Fig. 1. Distribution mixture analysis intermovement interval distribution of all LMs
Coleman CI, Sobieraj DM, Marinucci LN. Minimally important clinical difference of the Timed 25-Foot Walk Test: results from a randomized controlled trial in patients with multiple sclerosis. Curr Med Res Opin 2012;28:49–56. Freedman MS. Long-term follow-up of clinical trials of multiple sclerosis therapies. Neurology 2011;76(Suppl. 1):S26–34.
Society Proceedings / Clinical Neurophysiology 123 (2012) e101–e114 Heesen C, Böhm J, Reich C, Kasper J, Goebel M, Gold SM. Patient perception of bodily functions in multiple sclerosis: gait and visual function are the most valuable. Mult Scler 2008;14:988–91. doi:10.1016/j.clinph.2012.03.057
P8. Multidisciplinary care for patients with amyotrophic lateral sclerosis at Geneva University Hospitals—A.C. Héritier Barras, R. Iancu Ferfoglia, A. Mekideche, A. Truffert, D. Adler, J.P. Janssens (HUG, Geneva, Switzerland) Introduction: There is to date no curative treatment for patients with amyotrophic lateral sclerosis (ALS), so supportive and palliative measures are the main goals of patient management. Prior studies suggest that a multidisciplinary approach improves patients’ quality of life and survival. Methods: As of April 2010, Geneva University Hospitals have implemented a multidisciplinary longitudinal follow-up of patients with ALS. Every 3 months, patients and caregivers attend a day-clinic evaluation which includes the interventions of neurologists, pulmonologists, nutritionists, physiotherapists, occupational therapists, speech therapists, nurses, social workers, and a specialist in palliative care. This approach helps the patient to: – have access to several specialists within 1 day and at the same place, – anticipate complications such as respiratory failure, weight loss, swallowing problems, motor handicap, speech difficulties, – adapt his environment to the progression of his disease to maintain the highest level of autonomy, – receive administrative and financial support, – discuss and express wishes as to advanced directives. Results: To date, 40 patients aged from 41 to 76 years (17 women, 23 men) have integrated the multidisciplinary follow-up on an outpatient basis. Seventeen patients were electively put under noninvasive ventilation. No tracheostomy has so far been proposed. Advanced care planning was discussed and used to avoid inappropriate admissions to the intensive care unit (ICU). Ten patients underwent a gastrostomy. Sixteen deaths were recorded, occurred at home for 4 patients, in a long-term facility for 7 patients, in a medical ward for 4 patients and in the ICU for 1 patient. Conclusions: In comparison with a more classical approach, this multidisciplinary approach gives a place to each member of the medical team and allows a holistic approach of the patient. Family and caregivers at home, such as occupational therapists, physiotherapists and nurses, can also regularly share information and experience with the hospital team. Specialists in medical bio-ethics and ICU regularly join the multidisciplinary team to share reflexions on sensitive topics such as tracheostomy or assisted suicide. In a near future, a computerized database, including a prospective evaluation of quality of life and quality of care, will help us to evaluate the impact of our management on the patients’ quality of life, and justify the continuance of this approach. doi:10.1016/j.clinph.2012.03.058
P9. New educational program for patients with epilepsy at Geneva University Hospital—A.C. Héritier Barras, A.L. Hariel Spinelli, M. Seeck (HUG, Geneva, Switzerland) Introduction: Even in Switzerland with an excellent health care system, patients and their families continue to suffer from the physical, psychological, social and economic consequences of epilepsy.
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The physicians’ preoccupation with control of seizures and diagnostic processes often overshadows other true concerns. Methods: An educational approach to patients is proposed, focusing on their proper needs in order to acquire the necessary competences to adapt better to a life with epilepsy. The program is the following: 1. An initial face-to-face interview explores the patient’s needs in four domains: – comprehension: What do I understand about my situation? – emotions: What do I feel about that? – impact of the disease on the patient: How does my condition change my daily life? – impact of the disease on the patient’s social life: How does my condition change my relationship with others? After this interview, the patient follows either individual sessions, if the psychological impact predominates, or group sessions, if the social difficulties are prominent. 2. In the group sessions, several topics are explored: – my seizure: symptoms, localisation in the brain, facilitating factors, – management of my seizure: what to do, who to alert, – management of my treatment: advantages and disadvantages to take medication, – my specific living conditions: driving licence, applying for a job, pregnancy, travelling. 3. Patients benefit from a second individual interview to remind them of the different topics reviewed earlier, to discuss about more private concerns and to match them to their personal needs. Results: To date, 19 persons have attended the entire program. Thirteen patients and 4 relatives had benefit from an initial interview. Six patients had an individual monthly follow-up over 3– 6 months. The behaviour changed in most patients. Passive patients became active partners of health care, showing better comprehension of their own disease, sharing their experiences with people in a similar situation, which resulted in enhanced self-esteem. In parallel, all health caregivers modified their practice by considering global patients’ concerns and sharing their decision-making with the patient. Conclusions: To be effective, a therapeutic educational program must focus on the real needs of the patients. Each health caregiver should systematically include a global approach in the care processes of epileptic patients. doi:10.1016/j.clinph.2012.03.059
P10. Copper deficiency myelopathy despite of normal serum copper levels?—K. Haaf, U.W. Buettner, S. Biethahn (Kantonsspital Aarau Neurologische Klinik, Aarau, Switzerland) Introduction: Since toxic effects of copper to the nervous system are widely known, copper deficiency is less well known and difficult to diagnose (Prodan et al., 2002; Kumar, 2006; Solioz et al., 2010). We present a case highly suggestive of copper deficiency myelopathy with stable disease since start of copper substitution 18 months ago. History: The 69 year old patient first presented in the department of neurosurgery in 2003 with a progressive gait disorder resembling a claudicatio spinalis. MRI exhibited a narrowing of the spinal canal LWK 3 to SWK 1 without myelopathy. Decompressive surgery was performed. However, no clear improvement after surgery occurred.
Society Proceedings / Clinical Neurophysiology 123 (2012) e101–e114
P6. Leg movements during sleep in patients with obstructive sleep apnea—S. Fulda a, I. Rusakova a, R. Ferri b, C.L. Bassetti a, I. Pisarenco a, E. Colamartino a, M. Manconi a (a Sleep and Epilepsy Center, Neurocenter of Southern Switzerland, Civic Hospital (EOC) of Lugano, Lugano, Switzerland, b Sleep Research Centre, Department of Neurology I.C., Oasi Institute (IRCCS), Troina, Italy) Introduction: Leg movements (LMs) during sleep are frequent in patients with obstructive sleep apnea syndrome (OSAS). Current giudelines distinguish LMs associated with respiratory events from periodic leg movements (PLM), excluding the former when assessing PLM. The aim of the current study was to describe the time structure of global LMs, the relationship between PLM and respiratory related movements (RRM), and the relationship between RRMs and the main respiratory parameters in patients with OSAS. Methods: Retrospective chart review of all patients visiting the sleep lab of the Sleep and Epilepsy Center of the Neurocenter of Southern Switzerland between January 2010 and July 2011, which (1) had undergone full polysomnographic recording, (2) were between 18 and 75 years, (3) had an apnea-hypopnea index >20 and oxygen desaturation index >10 with more than half of all apneas being obstructive and (4) had >15 LMs/h (leg movements index (LMI)). We excluded patients with (1) any medical condition, that could influence LMs or apnea (such as narcolepsy, parasomnias, neurological disorders, renal or heart failure), (2) medication known or suspected to affect LMs (e.g. dopaminergic, benzodiazepines, antidepressants, etc.) and (3) recordings with artefacts of tibialis anterior or flow for more than 20% of the total sleep time. All LMs were scored and classifed as RRM, PLM, or isolated LMs according to WASM-IRLSSG criteria (2006). Intermovement intervals of LMs were analysed with distribution mixture analysis and differences between subjects with and without respiratory-related LMs were explored with non-parameteric tests. Results: Fifty six patients have been included (8F 48 M, 56 ± 12 years). Distribution mixture analysis of intermovement intervals (IMI) of all LMs identified 3 classes of LMs which could be distinguished based on their peak frequencies (Fig. 1). These were around 5 s, 20 s, and 40 s. The latter class (IMIs 40 s) could be traced back to the respiratory-related LMs, while the 20 s peak corresponds to periodic LMs, also found in patients with restless legs syndrome (RLS). LMs with very short IMIs (5 s) are related to wakefullness and arousal. Within the total group, 10 patients had no respiratory LMs (<1/h). Comparison between patients with and without respiratory LMs revealed more severe apnea (higher AHI, ODI), more disturbed sleep (longer sleep latency, more frequent awakenings), and more periodic and non-periodic LMs in patients with respiratory LMs.
Conclusions: Our preliminary results show that respiratory LMs can be distinguished from periodic LMs based on their time structure (IMI). Importantly, respiratory LMs are found predominantly in patients with periodic LMs suggesting a possible shared trait for increased motor activity during sleep. The time structure analysis of LMs may be able provide information on the pathogenesis and meaning of LMs in OSAS patients and might explain the different response of LMs to ventilatory treatment. doi:10.1016/j.clinph.2012.03.056
P7. Importance of mobility for quality of life in patients with multiple sclerosis—C. Vaney a, A. Bienz b, R. Zwicky b, M. Gerber c, M. Traber a (a Center for Medical and Neurological Rehabilitation, Crans-Montana, Switzerland, b Biogen Idec Switzerland AG, Zug, Switzerland, c GEM Clinical Research Consulting, Unterägeri, Switzerland) Introduction: Clinical trials indicate that disease-modifying therapies (DMT) are effective in reducing disease activity and may slow disease progression (Freedman, 2011). Patients judge gait and visual functions as the most valuable (Heesen et al., 2008). The present work explored the impact of patient’s mobility, especially difficulties in walking, as a factor influencing quality of life (QoL) from the perspective of physicians (HCPs). Methods: Between March and July 2011 a survey was conducted amongst 40 Swiss HCPs. The objective was to gain insight on symptoms most frequently reported, impact of walking impairment on QoL, assessment tools, treatment options used, follow-up and monitoring over time. Results: Walking impairment was considered important/very important by 98% HCPs. Regarding the type of walking impairment, the ‘lack of coordination/balance’ was reported most frequently and 14 times as 1st intervention. The impact of walking impairment on the ability to work was considered important/very important by 83% of HCPs, on social contacts by 75% and on family life by 73%. Walking impairment was reported through HCPs observation in 36 cases and through asking by HCP in 24 cases but primary reporting by the patient in 19 cases. The most frequently used tool to assess walking impairment was EDSS reported by 93% of HCPs. Physiotherapy was the most frequent help for walking impairment and was reported 38 times, in 53% as 1st priority. The involvement of physiotherapist was considered important/very important by 78% of HCPs. New treatment options were considered to be important/very important by 83% of HCPs. Forty three percentage of HCPs were not aware of new drugs for patients with walking impairment. Conclusions: The majority of Swiss HCPs have an awareness of walking impairment – most often reported as ‘lack of coordination/balance’ – as a primary concern. It impacts on the ability to work, affects social contacts and family life and consequently QoL. However, as patients raised this issue in nearly 50% of the cases, assessing walking impairment on a systematic basis does not occur in clinical practice. Walking impairment was assessed with EDSS, which is not easily performed. As drugs for patients with walking impairment are in development, it raises the need for tests such as Timed 25-Foot Walk (Coleman et al., 2012) in clinical practice especially as it is validated and simple to apply. References
Fig. 1. Distribution mixture analysis intermovement interval distribution of all LMs
Coleman CI, Sobieraj DM, Marinucci LN. Minimally important clinical difference of the Timed 25-Foot Walk Test: results from a randomized controlled trial in patients with multiple sclerosis. Curr Med Res Opin 2012;28:49–56. Freedman MS. Long-term follow-up of clinical trials of multiple sclerosis therapies. Neurology 2011;76(Suppl. 1):S26–34.
Society Proceedings / Clinical Neurophysiology 123 (2012) e101–e114 Heesen C, Böhm J, Reich C, Kasper J, Goebel M, Gold SM. Patient perception of bodily functions in multiple sclerosis: gait and visual function are the most valuable. Mult Scler 2008;14:988–91. doi:10.1016/j.clinph.2012.03.057
P8. Multidisciplinary care for patients with amyotrophic lateral sclerosis at Geneva University Hospitals—A.C. Héritier Barras, R. Iancu Ferfoglia, A. Mekideche, A. Truffert, D. Adler, J.P. Janssens (HUG, Geneva, Switzerland) Introduction: There is to date no curative treatment for patients with amyotrophic lateral sclerosis (ALS), so supportive and palliative measures are the main goals of patient management. Prior studies suggest that a multidisciplinary approach improves patients’ quality of life and survival. Methods: As of April 2010, Geneva University Hospitals have implemented a multidisciplinary longitudinal follow-up of patients with ALS. Every 3 months, patients and caregivers attend a day-clinic evaluation which includes the interventions of neurologists, pulmonologists, nutritionists, physiotherapists, occupational therapists, speech therapists, nurses, social workers, and a specialist in palliative care. This approach helps the patient to: – have access to several specialists within 1 day and at the same place, – anticipate complications such as respiratory failure, weight loss, swallowing problems, motor handicap, speech difficulties, – adapt his environment to the progression of his disease to maintain the highest level of autonomy, – receive administrative and financial support, – discuss and express wishes as to advanced directives. Results: To date, 40 patients aged from 41 to 76 years (17 women, 23 men) have integrated the multidisciplinary follow-up on an outpatient basis. Seventeen patients were electively put under noninvasive ventilation. No tracheostomy has so far been proposed. Advanced care planning was discussed and used to avoid inappropriate admissions to the intensive care unit (ICU). Ten patients underwent a gastrostomy. Sixteen deaths were recorded, occurred at home for 4 patients, in a long-term facility for 7 patients, in a medical ward for 4 patients and in the ICU for 1 patient. Conclusions: In comparison with a more classical approach, this multidisciplinary approach gives a place to each member of the medical team and allows a holistic approach of the patient. Family and caregivers at home, such as occupational therapists, physiotherapists and nurses, can also regularly share information and experience with the hospital team. Specialists in medical bio-ethics and ICU regularly join the multidisciplinary team to share reflexions on sensitive topics such as tracheostomy or assisted suicide. In a near future, a computerized database, including a prospective evaluation of quality of life and quality of care, will help us to evaluate the impact of our management on the patients’ quality of life, and justify the continuance of this approach. doi:10.1016/j.clinph.2012.03.058
P9. New educational program for patients with epilepsy at Geneva University Hospital—A.C. Héritier Barras, A.L. Hariel Spinelli, M. Seeck (HUG, Geneva, Switzerland) Introduction: Even in Switzerland with an excellent health care system, patients and their families continue to suffer from the physical, psychological, social and economic consequences of epilepsy.
e105
The physicians’ preoccupation with control of seizures and diagnostic processes often overshadows other true concerns. Methods: An educational approach to patients is proposed, focusing on their proper needs in order to acquire the necessary competences to adapt better to a life with epilepsy. The program is the following: 1. An initial face-to-face interview explores the patient’s needs in four domains: – comprehension: What do I understand about my situation? – emotions: What do I feel about that? – impact of the disease on the patient: How does my condition change my daily life? – impact of the disease on the patient’s social life: How does my condition change my relationship with others? After this interview, the patient follows either individual sessions, if the psychological impact predominates, or group sessions, if the social difficulties are prominent. 2. In the group sessions, several topics are explored: – my seizure: symptoms, localisation in the brain, facilitating factors, – management of my seizure: what to do, who to alert, – management of my treatment: advantages and disadvantages to take medication, – my specific living conditions: driving licence, applying for a job, pregnancy, travelling. 3. Patients benefit from a second individual interview to remind them of the different topics reviewed earlier, to discuss about more private concerns and to match them to their personal needs. Results: To date, 19 persons have attended the entire program. Thirteen patients and 4 relatives had benefit from an initial interview. Six patients had an individual monthly follow-up over 3– 6 months. The behaviour changed in most patients. Passive patients became active partners of health care, showing better comprehension of their own disease, sharing their experiences with people in a similar situation, which resulted in enhanced self-esteem. In parallel, all health caregivers modified their practice by considering global patients’ concerns and sharing their decision-making with the patient. Conclusions: To be effective, a therapeutic educational program must focus on the real needs of the patients. Each health caregiver should systematically include a global approach in the care processes of epileptic patients. doi:10.1016/j.clinph.2012.03.059
P10. Copper deficiency myelopathy despite of normal serum copper levels?—K. Haaf, U.W. Buettner, S. Biethahn (Kantonsspital Aarau Neurologische Klinik, Aarau, Switzerland) Introduction: Since toxic effects of copper to the nervous system are widely known, copper deficiency is less well known and difficult to diagnose (Prodan et al., 2002; Kumar, 2006; Solioz et al., 2010). We present a case highly suggestive of copper deficiency myelopathy with stable disease since start of copper substitution 18 months ago. History: The 69 year old patient first presented in the department of neurosurgery in 2003 with a progressive gait disorder resembling a claudicatio spinalis. MRI exhibited a narrowing of the spinal canal LWK 3 to SWK 1 without myelopathy. Decompressive surgery was performed. However, no clear improvement after surgery occurred.