Management of Spastic Paresis and Cervical Dystonia: access to Therapeutic Innovations Through an International Program of Practical Courses

Purpose: Our purpose was to determine satisfaction and confidence of the Ixcellence Network training program on health care practitioners using botulinum toxin A (BoNT-A) for neurologic disorders, including spastic paresis and cervical dystonia. / Methods: The Ixcellence Network training program was designed by a scientific committee of 6 experts and then tested at centers in Europe, and Latin America. The training, provided by 16 experienced neurologists and rehabilitation specialists, consisted of theoretic and practical sessions that covered the different stages of the patient's journey from diagnosis to tailored treatment and rehabilitation. Trainees' feedback and the impact on participants' practice were evaluated by 2 individual questionnaires, at the end of the session (T0) and at 6 months (T6). Trainers' feedback was also collected through an individual questionnaire. / Findings: Between September 2012 and December 2017, 728 trained physicians participated in training programs with 48%, 23%, and 29% of attendees participating in training sessions dedicated to adult spastic paresis, child spastic paresis, and cervical dystonia, respectively. At T0, 93% of attendees thought that they had been given new information and 90% thought that the training would change their daily practice. This was confirmed at T6 by 93% of respondents. Trainees were highly satisfied with the program, in particular with the practical sessions. Trainers expectations were met for attendees' level of expertise, motivation, language, and participation. / Implications: In this descriptive study, we show that the Ixcellence Network program represents a new educational approach to promote consistency in care practices and dissemination of expertise on the use of BoNT-A for neurologic disorders.

Ixcellence Network®: an international educational network to improve current practice in the management of cervical dystonia or spastic paresis by botulinum toxin injection.

Botulinum toxin is a well-established treatment for a number of conditions involving muscle hyperactivity, such as focal dystonia and spastic paresis. However, current injection practice is not standardized and there is a clear need for structured training. An international group of experts in the management of patients with cervical dystonia (CD) and spastic paresis created a steering committee (SC). For each therapeutic area, the SC developed a core slide set on best practice, based on the literature. International sites of expertise were identified for training and courses were designed to include lectures and casebased learning. Where possible, courses received accreditation from the European Union of Medical Specialists (UEMS). Each course was peer reviewed by the SC, the UEMS accreditation board and the attendees themselves (through evaluation questionnaires). Attendees' feedback was shared with the SC and the trainers to tailor future training sessions. From the program launch in 2012 to December 2014, 328 physicians from 34 countries were trained in a total of 58 courses; 67% of the courses focused on spastic paresis and 33% on CD. Of the 225 (69%) physicians who completed feedback forms, 95% rated their course as 'above average/excellent' in meeting the preset learning objectives. Most (90%) physicians declared that attending a course would lead them to change their practice. The development of the 'Ixcellence Network' for continuous medical education in the fields of spastic paresis and CD has provided a novel and interactive way of training physicians with previous experience in botulinum toxin injection

Effectiveness of integration and re-integration into work strategies for persons with chronic conditions: A systematic review of European strategies

Due to low employment rates associated to chronic conditions in Europe, it is essential to foster effective integration and re-integration into work strategies. The objective of this systematic review is to summarize the evidence on the effectiveness of strategies for integration and re-integration to work for persons with chronic diseases or with musculoskeletal disorders, implemented in Europe in the past five years. A systematic search was conducted in MedLine, PsycINFO, CDR-HTA, CDR-DARE and Cochrane Systematic Reviews. Overall, 32 relevant publications were identified. Of these, 21 were considered eligible after a methodological assessment and included. Positive changes in employment status, return to work and sick leave outcomes were achieved with graded sickness-absence certificates, part-time sick leave, early ergonomic interventions for back pain, disability evaluation followed by information and advice, and with multidisciplinary, coordinated and tailored return to work interventions. Additionally, a positive association between the co-existence of active labour market policies to promote employment and passive support measures (e.g., pensions or benefits) and the probability of finding a job was observed. Research on the evaluation of the effectiveness of strategies targeting integration and re-integration into work for persons with chronic health conditions needs, however, to be improved and strengthened. © 2018 by the authors. Licensee MDPI, Basel, Switzerland

Experienced complaints, activity limitations and loss of motor capacities in patients with pure hereditary spastic paraplegia: a web-based survey in the Netherlands

Contains fulltext : 217561.pdf (publisher's version ) (Open Access

Experienced complaints, activity limitations and loss of motor capacities in patients with pure hereditary spastic paraplegia: a web-based survey in the Netherlands

Background Hereditary spastic paraplegia (HSP) is a group of inherited disorders characterized by progressive spastic paresis of the lower limbs. Treatment is often focused on reducing spasticity and its physical consequences. To better address individual patients' needs, we investigated a broad range of experienced complaints, activity limitations, and loss of motor capacities in pure HSP. In addition, we aimed to identify patient characteristics that are associated with increased fall risk and/or reduced walking capacity. Methods We developed and distributed an HSP-specific online questionnaire in the Netherlands. A total of 109 out of 166 questionnaires returned by participants with pure HSP were analyzed. Results Participants experienced the greatest burden from muscle stiffness and limited standing and walking activities, while 72% reported leg and/or back pain. Thirty-five and 46% reported to use walking aids (e.g. crutches) indoors and outdoors, respectively; 57% reported a fall incidence of at least twice a year ('fallers'); in 51% a fall had led to an injury at least once; and 73% reported fear of falling. Duration of spasticity and incapacity to rise from the floor were positively associated with being a 'faller', whereas non-neurological comorbidity and wheelchair use were negatively associated. Higher age, experienced gait problems, not being able to stand for 10 min, and incapacity to open a heavy door showed a negative association with being a 'walker without aids' (> 500 m). Conclusions Our results emphasize the large impact of spastic paraparesis on the lives of people with pure HSP and contribute to a better understanding of possible targets for rehabilitation