Other - 1 | The first 10 years with Multiple Sclerosis: the longitudinal course of daily functioning (#25)
H. Beckerman1, 2, J. C. Kempen1, 2, D. L. Knol2, C. H. Polman2, G. J. Lankhorst1, V. de Groot1, 2
1
VU University Medical Center Rehabilitation Medicine, PO BOX 7057, 1007 MB Amsterdam, Netherlands
2
VU University Medical Center MS Center Amsterdam, PO BOX 7057, 1007 MB Amsterdam, Netherlands
Objective: The aim of this study was to determine the course of functioning and the rate of change in multiple sclerosis (MS) patients on the domains of neurological deficits, physical functioning, mental health, social functioning and general health in the 10-years since their definite diagnosis.
Methods: The long-term prospective follow-up study described here commenced in 1998-2000 and included an incidence cohort of 156 patients with a definite diagnosis of MS. Participants were examined systematically, beginning immediately after definite diagnosis, followed by the time points 6 months, 1, 2, 3, 6 and 10 years. The Expanded Disability Status Scale (EDSS), the Functional Independence Measure (FIM) and the Medical Outcome Study Short Form 36 (SF36), or their sub-scales, were used to assess the various domains of daily functioning. The courses of functioning were analyzed using linear mixed models.
Results: The time course of the EDSS, SF36 physical functioning, FIM motor function, and FIM cognitive function could be best described by polynomial models. Neurological disability and physical functioning worsened significantly, with a time course dependent on whether a patient had MS of the relapse onset type (RO) or non-relapse onset type (NRO). Cognitive and social functioning worsened significantly over time, but with the same (accelerated) rate of change in both the RO and NRO groups. The scores on the SF36 mental health, SF36 role physical, and SF36 general health changed only slightly in the first 10 years following definite diagnosis.
Conclusion: A large percentage of patients with MS already start to show functional limitations immediately after disease onset. In the subsequent ten years, this neurodegenerative disease causes relatively mild changes in the patient’s daily activities and participation. Although patients showed declines, more pronounced in physical functioning than in cognitive and social functioning, there were no time-related declines on SF36 mental health, SF36 role physical, or SF36 general health.
References
1. De Groot V, Beckerman H, Lankhorst GJ, Polman CH, Bouter LM. The initial course of daily functioning in multiple sclerosis: a three-year follow-up study. Mult Scler 2005;11:713–718.
2. De Groot V, Beckerman H, Uitdehaag BMJ, De Vet HCW, Lankhorst GJ, Polman CH, Bouter LM. The usefulness of evaluative outcome measures in patients with multiple sclerosis. Brain 2006; 129(Pt 10):2648–59.
Other - 2 | Travel behaviour in persons with Multiple Sclerosis using travel diaries and GPS tracking technologies (#45)
A. Neven1, D. Janssens1, G. Alders2, G. Wets1, B. Van Wijmeersch2, 3, 4, P. Feys2, 3
1
Hasselt University Transportation Research Institute (IMOB), Wetenschapspark 5 bus 6, 3590 Diepenbeek, Belgium
2
PHL University College REVAL Rehabilitation Research Centre, Agoralaan Building A, 3590 Diepenbeek, Belgium
3
Hasselt University BIOMED Biomedical Research Institute, Agoralaan Building C, 3590 Diepenbeek, Belgium
4
Rehabilitation and MS Centre, Boemerangstraat 2, 3900 Overpelt, Belgium
Objective: Persons with Multiple Sclerosis (MS) experience several physical and cognitive problems which can influence their travel behaviour. Few data are available about the real participation (restrictions) in daily outdoor activity and travel behaviour. This pilot study aimed to document, in relation to disease-related disability, which, and how many, activities and trips were daily made by persons with MS, and what transport modes were used.
Methods: 36 persons with MS (Expanded Disability Status Scale, EDSS, 1.5-8.0, age 27-63) and 24 healthy controls (age 25-62) were studied, using activity-related travel diaries and GPS tracking devices. Information about overall disability characteristics and function was gained by standard clinical tests and questionnaires. MS patients were further divided in subgroups based on EDSS cut-off scores 4.5 and 6.5.
Results: Persons with mild ambulatory dysfunction (EDSS 1.5-4.0, n=17) showed similar travel characteristics as healthy controls (regarding number of trips, travel mode and company) with few restrictions during travelling, although self-limiting modifications in driving behaviour were observed. Statistically significant adaptations in activity and travel behaviour were detected in the moderate (EDSS 4.5-6.5, n=8) and severe MS subgroups (EDSS >6.5-8.0, n=11): driving independently became more difficult, significant more trips were made with company and the duration of performed activities had increased. In the severe MS subgroup, the living environment seemed to have a large influence on the making of (independent) trips.
Conclusion: The combination of self-reported travel diaries and objective GPS loggers offered detailed information about the actual outdoor travel behaviour of persons with MS, which was significantly changed in MS patients with EDSS greater than 4. Future studies in larger samples will assess the specific and relative impact of disease-related psychological, visual, cognitive and physical factors on the activity and travel behaviour in patient profiles with various disability severity.
Other - 3 | Developing and testing of the “Sapere Migliora” information aid for newly diagnosed ms patients (#50)
A. Giordano1, A. Lugaresi2, V. Martinelli3, F. Granella4, P. Confalonieri5, M. Trojano6, M. Messmer Uccelli7, C. Borreani8, A. Solari1 on behalf of the SIMS project.
1
Foundation IRCCS Neurological Institute C. Besta Unit of Neuroepidemiology, Via Celoria, 11, 20133 Milan, Italy
2
University G. d’Annunzio of Chieti-Pescara Department of Neuroscience and Imaging, Chieti, Italy
3
Scientific Institute Hospital San Raffaele Department of Neurology, Milan, Italy
4
University of Parma Department of Neurosciences, Neurology Unit, Parma, Italy
5
Foundation IRCCS Neurological Institute C. Besta Department of Neuromuscular Diseases, Milan, Italy
6
University of Bari Departments of Neurological and Psychiatric Sciences, Bari, Italy
7
Italian MS Society Dept. of Health Services and Research, Genoa, Italy
8
National Cancer Institute Foundation Psychology Unit, Milan, Italy
Objective: The proliferation of patient information and decision aids is not paralleled by careful documentation of how such instruments are produced and tested for efficacy.
We describe our phased approach (informed to the MRC “framework for design and evaluation of complex interventions to improve health”) [1] regarding the “Sapere Migliora” information aid for newly-diagnosed MS patients.
Methods: In Phase 1 the information aid and outcomes were developed by a multidisciplinary panel using information derived from focus groups (FGs) with patients and clinicians [2], and a comprehensive literature review. In Phase 2, the efficacy of the information aid was compared to current practice in a multicenter randomised controlled trial (SIMS-Trial, ISRCTN81072971). Moreover, SIMS-Trial participants’ experiences were assessed using individual interviews (patients) and FGs (physicians). In Phase 3, the information aid was revised and updated guided by results of previous phases, and it is now being implemented in routine practice (SIMS-Practice).
Results: The information aid devised in Phase 1 consisted of a PC assisted personal interview with a physician, which took place within 2 weeks from diagnosis communication, and a take-home booklet. We also developed the MS knowledge questionnaire –MSKQ [3] and validated the care satisfaction questionnaire -COSM-R [4]. In Phase 2, the SIMS-Trial proved the effectiveness of the information aid [5] and its safety [6]. Qualitative assessment of participants’ experiences provided refinement hints (e.g. information aid not suitable for patients with primary progressive MS, website to be available also for home consultation) [7]. In Phase 3, the revised and updated information aid was made available to all Italian MS centres. Of these, 22 are participating in the SIMS-Practice, which compares the acceptability and usefulness of the information aid (interview plus take-home booklet/web-site) with booklet/web-site consultation alone.
Conclusion: The “Sapere Migliora” information aid currently available originates from successive phases in which mixed methodologies were used over more than five years, proving its effectiveness and refining its content and procedure.
Acknowledgements: The SIMS project was supported by the US National MS Society (Phase 1, Grant PP1201), and by the Fondazione Italiana Sclerosi Multipla (FISM) (Phase 2, Grants 2007/R/19 and 2009/R/4; Phase 3, Grant 2010/S/1).
References
1. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M; Medical Research Council Guidance. Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ 2008 Sep 29;337:a1655. doi: 10.1136/bmj.a1655.
2. Solari A, Acquarone N, Pucci E, Martinelli V, Marrosu MG, Trojano M, Borreani C, Messmer Uccelli M. Communicating the diagnosis of multiple sclerosis - a qualitative study. Mult Scler 2007;13:763-9.
3. Giordano A, Messmer Uccelli M, Pucci E, Martinelli V, Borreani C, Lugaresi A, Trojano M, Granella F, Confalonieri P, Radice D and Solari A on behalf of the SIMS-Trial group. The Multiple Sclerosis Knowledge Questionnaire: a self-administered instrument for recently diagnosed patients. Mult Scler 2010;16:100-11.
4. Solari A, Mattarozzi K, Vignatelli L, Giordano A, Russo PM, Messmer Uccelli M and D’Alessandro R on behalf of the SIMS-Trial group and of the GERONIMUS group. Development and validation of a patient self-assessed questionnaire on satisfaction with communication of the multiple sclerosis diagnosis. Mult Scler 2010;16:1237–47.
5. Solari A, Martinelli V, Trojano M, Lugaresi A, Granella F, Giordano A, Messmer Uccelli M, D’Alessandro R, Pucci E, Confalonieri P, and Borreani C, on behalf of the SIMS-Trial group. An information aid for newly diagnosed multiple sclerosis patients improves disease knowledge and satisfaction with care. Mult Scler 2010; 16:1393–405.
6. Giordano A, Granella F, Lugaresi A, Martinelli V, Trojano M, Confalonieri P, Radice D, Solari, on behalf of the SIMS-Trial group. Anxiety and depression in multiple sclerosis patients around diagnosis. J Neurol Sci 2011; 307:86-91.
7. Borreani C, Giordano A, Falautano M, Lugaresi A, Martinelli V, Granella F, Tortorella C, Plasmati I, Radaelli M, Farina D, Dalla Bella E, Bianchi E, Acquarone N, Miccinesi G, Solari A, on behalf of the SIMS-Trial group. Experience of an information aid for newly-diagnosed multiple sclerosis patients: a qualitative study on the SIMS-Trial. Health Expect 2011 Nov 1. doi: 10.1111/j.1369-7625.2011.00736.x.
Other - 4 | Exploring patient and caregiver response to recommendations following neuropsychological assessment with feedback (#56)
W. Longley1, 2, R. Tate2, T. Shaw1
1
MS Australia - ACT/NSW/VIC Client Services, PO Box 210, Lidcombe 1825, Australia
2
Univeristy of Sydney Rehabilitation Studies Unit, PO Box 6, Ryde 1680, Australia
Objective: Patient and caregiver response to neuropsychological assessment with feedback has received little attention in the scientific literature. This study explored recommendations given to patients and caregivers with multiple sclerosis (MS) and two aspects of their response.
Methods: Thirty-eight MS patients and 31 of their caregivers were recruited. Average age of the patients was 45 years, 58% were female, and average duration of MS was 11 years. Patients and caregivers both completed a telephone-based questionnaire with an independent assessor before and after neuropsychological assessment. The relationship between two aspects of their response (patient and caregiver report of helpfulness of, and patient adherence to, recommendations) and four domains of patient functioning (demographic, MS status, cognitive, and psychological) three domains of caregiver functioning (demographic, caregiving activities, and caregiver psychological) were examined using psychometrically sound measures (e.g. MS Disease Steps, MS Neuropsychological Questionnaire).
Results: Patients received an average of 4.9 (SD=1.8) recommendations during feedback, mostly relating to management of cognitive impairment (53% of recommendations) and psychological concerns (23%). Both patients and caregivers rated the recommendations overall as “moderately helpful” to “very helpful” (patients: 2.6/3, SD=.5; caregivers: 2.4/3, SD=.5). Patients reported adhering to 69% (SD=21.1) of the overall recommendations; caregivers reported patients adhering to 64% (SD=24.5).
By contrast, patient and caregiver ratings of patient adherence were not significantly correlated with each other (rs=.32, p=.11). Moreover, ratings of patient adherence were not related to ratings of the helpfulness of the recommendations (patients: rs=.16, p=.39; caregivers: rs=.22, p=.28). None of the patient demographic, MS status, psychological or cognitive variables (including performance on objective memory tests) was significantly associated with patient report of adherence. Similarly, most of the caregiver variables were not associated with patient adherence.
Conclusion: The lack of significant association between (i) the wide range of potential predictor variables, (ii) ratings of the helpfulness of recommendations, and (iii) reports of adherence to recommendations, raises the question of how best to measure response to neuropsychological recommendations.
Other - 5 | Management of sleep disturbance: A survey of current practice in the United Kingdom (UK) (#59)
J. Freeman1, P. Cowan2, S. Hourihan3, E. Johansson-Charles4, K. McDowall5, A. Nock6, H. Rowlands7
1
Plymouth University School of Health Professions, Peninsula Allied Health Centre, Plymouth, PL68BU, Great Britain
2
NHS Lanarkshire Kenilworth Medical Centre, Kenilworth Court, Cumbernauld, G671BP, Great Britain
3
University College London Hospital Therapy and Rehabilitation, Queen Square, London, WC1N3BG, Great Britain
4
Northwick Park Hospital Physical Disability Support Team, Watford Road, Harrow, HA13UJ, Great Britain
5
South London Healthcare Trust Elmstead Unit, Frognal Avenue, Sidcup, DA146LT, Great Britain
6
Poole Hospital NHS Foundation Trust MS Service, Longfleet Rd, Poole, BH152JB, Great Britain
7
Stockport NHS Foundation Trust Devonshire Centre for Rehabilitation, Cherry TRee Lane, Stockport, SK27PZ, Great Britain
Objective: Sleep disturbance affects quality of life & is related to increased morbidity in MS. It may be a primary problem or secondary to symptoms. Management requires input from multi-disciplinary team members (mdt). While recommended that sleep disturbance should be addressed within daily management, there is a lack of literature describing what comprises routine practice. This ethically approved study was undertaken by the Research Group of Therapists in MS (TiMS), a national network of MS therapists. It aimed to gain an overview of sleep disturbance management by UK nurses & therapists.
Methods: In this cross-sectional survey all 256 delegates at the 2011 MS Trust Conference were provided with a questionnaire & were encouraged to complete it during the 3 day period. Survey instrument: A literature search failed to unearth a relevant questionnaire & thus one was developed, through an iterative process, via TiMS web-based discussions, published literature & a 1 day Research Group meeting. A draft questionnaire was piloted on 20 people reflecting those intended for inclusion in the survey. The final questionnaire comprised 16 questions with categorical response options (7 socio-demographic, 4 assessment/evaluation; 3 management; 2 knowledge/training), & 1 open ended question. Feedback demonstrated the instrument had good face & content validity.
Results: 180 delegates completed the questionnaire; 70% response rate. Respondents worked across a range of clinical settings, typically as part of an mdt (73%) & within an MS (56%) or neurology specialist (28%) setting. 43% had worked in the MS field for > 10 years, highlighting the considerable MS experience of this group. A range of interventions was used (e.g. advice 50%; fatigue management 16%; relaxation 24%; exercise 29%); typically on an individual basis (65%). While most (84%) considered sleep management to be part of their role, only 10% felt confident in their knowledge about it. Relatively few used specific sleep disturbance instruments, either for assessment (33%) or to evaluate outcome (39%); 37% were not aware specific instruments were available. Perhaps unsurprisingly 49 % would value further training on this topic.
Conclusion: This survey provides an initial understanding of current practice by experienced MS nurses & therapists in the UK. It suggests knowledge about sleep disturbance, particularly related to assessment instruments, may be limited. Further exploration is needed to verify these findings across different samples.
Other - 6 | Prevalence of pain in Multiple Sclerosis: A multicenter Italian study (#102)
C. Solaro1, M. Cella1, E. Pedemonte1, E. Trabucco1, V. Martinelli2, M. Radaelli2, D. Centonze3, S. Rossi3, M. G. Grasso4, A. Clemenzi4, S. Bonavita5, A. D Ambrosio5, F. Patti6, E. D Amico6, G. Cruccu7, A. Truini7
1
Neurology Head-Neck, ASL3 Genovese, Largo N. Rosso 2, 16154 Genoa, Italy
2
HSR Neurology, Milan, Italy
3
Policlinico University Tor Vergata UOSD Center Of Multiple Sclerosis, Rome, Italy
4
IRCCS Santa Lucia Foundation Neurology, Rome, Italy
5
Second University of Naples Neurology, Naples, Italy
6
University of Catania Neurology, Catania, Italy
7
University La Sapienza Neurological Sciences, Rome, Italy
Objective: In Multiple Sclerosis (MS) pain represents one of the most common symptoms, estimated to occur in 29% to 86% of patients.
The aim of the study was to assess the prevalence of pain among Multiple Sclerosis patients, in a multicentre cross-sectional study and its relationship with pain scales, depression and quality of life.
Pain syndromes are mainly classified into neuropathic pain, caused by injury anywhere in the nervous system and somatic pain, due to an appropriate physiological response when nociceptors are activated.
Methods: Data were collected in a multi-centre, cross-sectional study involving 6 Italian MS centres using a face-to-face structured questionnaire compiled by a neurologist. 200 patients/centres with a diagnosis of MS or CIS over a period of 6 months were interviewed. The only exclusion criterion was a relapse in the last month before the beginning of the study.
The questionnaire included demographic data, year of symptom onset and diagnosis, Expanded Disability Status Scale (EDSS), clinical course, DN4, Beck Scale, QoL36, Disease modifying treatment, pain therapy, presence of neuropathic pain (trigeminal neuralgia, Lhermitte’s sign, dysesthetic pain), somatic pain, headache, acute pain due to optic neuritis. We considered only symptoms present at the time of the interview. All data were registered in an ad-hoc database.
In subjects with DN4 greater than 4 NPSI scale were administered.
Results: Out of 1237 subjects interviewed 828 were female and 409 male, mean age was 42.8 years, mean disease duration 9.7 years, 898 subjects had relapsing remitting disease course, 243 were secondary progressive, 50 were primary progressive and 27 were CIS. Mean EDSS score was 3.1. 445 subjects reported at least one painful symptom, of whom 172 (14 %) neuropathic type. Comparison between different groups for age, EDSS, disease duration and disease course and specific scale score for pain, depression and QoL will be presented.
Conclusion: This study underlines the relevance of pain in the clinical course of MS.
