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Scientific evidence indicates the presence of secondary conditions (such as pressure injuries) after spinal cord injury (SCI). Treatment methods focusing on the management of paraplegia and tetraplegia include systematic preventive follow-up. These advances have significantly improved the functional and vital prognosis of people with SCI, but some people may not have access to these specialized organizations or may not adhere closely to this medicalized vision. We used a narrative approach to explore the perceptions of people with SCI to better understand their adherence to follow-up.We aimed to determine the "common denominators" that lead to adherence or non-adherence to long-term follow-up after SCI.People with SCI who had completed their first rehabilitation period for1 year were included with regard to 2 variables: 1) an actual medical follow-up or not and 2) a history of pressure injury or not. A review of the literature was used as preparation for semi-directive interviews, which were prospectively analysed by using qualitative analysis software. Thematic saturation was reached at 28 interviews, and 32 interviews were ultimately completed.Three main areas concerning participants' perceptions emerged: people's readiness, appropriation and modulation of the systematic follow-up. We developed a broad conceptual framework representing follow-up and the promotion of the long-term health of people with SCI from their perspectives.The medical environment should ensure that people with SCI are ready to actively consider the implementation of prevention strategies and should take into account their ability to establish their own truth, to integrate various life stages after SCI and to negotiate systematic follow-up. The implementation of data about functioning should be conducted using the concept of the Learning Health System.

Objectives Retrospective study over the last 30 years of life expectancy in patients suffering from Duchenne muscular dystrophy (DMD). Analysis of the role of ventilatory assistance and causes of death. Patients and methods One hundred and nineteen adult DMD patients were hosted during 1981 to 2011 at AFM Yolaine de Kepper centre, Saint-Georges-sur-Loire, France. Patients’ life expectancy was calculated using Kaplan-Meier model. Results Life expectancy without or with ventilatory assistance was 22.16 and 36.23 years, respectively. Similarly, life expectancy of patients born from 1970 (mostly with ventilatory assistance) was 40.95 years old from 1970 and 25.77 years old before 1970. Causes of death changed. Cardiac origins of death have increased from 8% to 44%. Conclusion Ventilator assistance, in this study mostly through tracheotomy prolongs by more than 15 years life expectancy of DMD patients. It allows conservation of a satisfactory quality of life, and should be systematically proposed to patients.

Introduction/Background Resilience corresponds to one's ability to positively outcome while experiencing aversive situation. It may be linked with a disparity of coping strategies after a spinal cord-injury (SCI). After a recent work realized in a population without SCI, suggesting the influence of empathy and alexithymia, the aim of our work consisted in studying their relative contribution on resilience in a sample of SCI patients. Material and method The survey consisted in the French version of the Connor-Davidson resilience scale (CDRISC10), the interpersonal reactivity index (IRI), the Toronto-alexithymia-scale (TAS20), the Brief-cope scale (b-COPE), the Hospital anxiety-depression scale (HAD) and the sense of coherence scale (SOCS), administered to 17 SCI patients included in the French study QaliPREPS (qualitative analysis of SCI patients’ perception of a systematic medical follow-up). Mean scores for full scales and their respective dimensions were calculated. The correlations between the different constructs were analyzed and the predictors of resilience were highlighted on the basis of multiple linear regression studies. Results Mean scores calculated for anxiety/depression, adaptation, sense of coherence and resilience were comparable to those calculated for a sample of adults with no SCI. Resilience presented significant positive correlation with copying ability and empathy, and significant negative correlation with alexithymia. Our data suggested that two dimensions of alexithymia (i.e., difficulty to describe one's own emotions and externally oriented thinking) and one dimension of empathy (fantasy ability) are negative predictors of resilience. By contrast, three dimensions of empathy (perspective taking, empathic concern, personal distress) positively influenced the resilience. Conclusion We present the first analysis of resilience predictors in SCI patients. However, our study is limited by the small number of patients included into the survey. It justifies a scaling up in order to increase the strength of our conclusions.

Introduction/Background Pressure ulcer risk assessment provides an indicator of quality of care in French health establishments. The predictive value of clinical assessment tools is lower for people with spinal cord injury (SCI). We hypothesized that skin complications would be less frequent in traumatic SCI patients with tetraplegia (TSCIt) who were initially managed in French regions with a high level of specialized SCI rehabilitation experience. Material and method First, we used the most recent French epidemiological survey of patients with SCI to determine a “Level of Regional Experience in Specialized Physical Medicine and Rehabilitation” (LRE). We then studied the medical and social variables reported in the Tetrafigap survey (which compiled a cohort of TSCIt, to assess their trajectory and life conditions following the return to community life) using univariate analysis according to these LREs (Chi2 test using a significance threshold of P Results Management in high-LRE regions was associated with a lower occurrence of pressure ulcers during early treatment and in the long-term (on average, 8 years post-trauma). Conclusion Using pressure ulcers as a marker, our study demonstrated the protective link of regional experience of the early management of TSCIt. In our opinion, efforts should first prevent a dilution effect through holistic health care for SCI, within the scope of a regional organization that would link referral centers and local health care networks.

Introduction/Background Skill profiles of a wheelchair, notably leading to the initial choice after a spinal cord injury (SCI), include the patient's comfort, his/her safety as well as physical and social performances. The multidisciplinary team of first rehabilitation within a spinal unit wondered about the quality of the patients’ positioning. The team consequently wished to create an indoor reference document as well as a simple helping tool, so as to choose correctly the wheelchair, to settle any patient in a convenient manner and to check this settling. Material and method Frontal and profile photos were taken of SCI individuals in the sitting position in a manual or a powered wheelchair. A multidisciplinary specialist team working in a spinal unit (doctors, nurses, physiotherapists, occupational therapists and caregivers) analyzed each patient positioning within his/her wheelchair, mentored by trained medical quality practitioners. A review of the literature relating any component and accessories of the wheelchairs was then carried-out and compared with data from the previous analysis. Results An illustrated reference notebook was created, describing the choice of the wheelchair according to the motor level of the SCI patient, then according to the characteristics of his/her positioning and the adaptation of components and accessories. A checklist form was also developed to make easier the procedure of settling and then its revision, as a potential tool for the transmissions of detected anomalies between the various professionals. Both documents will be assessed by using them for the analysis of a new series of photos. Conclusion The whole staff of the neurological PMR department will then be trained with these documents that will afterwards be placed in the documentary management system of our University Hospital. They could be useful as information tools for already involved staffs either or as training tools for professionals newly dealing with SCI patients.

Objective To identify the long-term clinical, individual, and social risk factors for the development of pressure ulcers (PUs) in traumatic spinal cord-injured persons with tetraplegia (TSCIt). Material/Patients and methods/Design Cohort survey with self-applied questionnaires in 1995 and 2006. Thirty-five French-speaking European physical medicine and rehabilitation centers participating in the Tetrafigap surveys. A total of 1641 tetraplegic adults were surveyed after an initial post-traumatic period of at least 2 years. Eleven years later, a follow-up was done for 1327 TSCIt, among whom 221 were deceased and 547 could be surveyed again. Main outcome measure was the proportion of PUs documented at the various defined time points, relative to the medical and social situations of the TSCIt, by using univariate analyses followed by logistic regression. Results Of the participants, 73.4% presented with a PU during at least one period after their injury. Four factors had an effect on the occurrence of PU at the long-term. On the one hand, a protective feature for this population, persons with incomplete motor impairment (OR = 0.5) and moreover those who were able to walk (OR = 0.2); on the other hand, a strong predictive factor was the development of a PU during the initial post-trauma phase (OR = 2.7). Finally, a significant situational factor was the lack of social network (OR = 3.1). Discussion/Conclusion We believe that the highlighting of a motor incomplete feature of SCI, protective for the development of PU, and of a medical risk factor, an early PU, which served as a definitive marker of the trajectory of TSCIt, together with a social situational factor, indicates the crucial role of initial management and of long-term follow-up.

OBJECTIVE: To identify socio-occupational and medical factors associated with non-return to work 3 years after severe road-accident injury. MATERIALS/PATIENTS AND METHODS: ESPARR is a prospective 5-year cohort of 1168 road-accident victims, aged over 16 years, in the Rhone administrative Departement of France. 141 (63.5%) of the 222 subjects with severe injury (maximal abbreviated Injury Scale>=3) in work at the time of the accident reported whether they had returned to work during the 3 years following the accident. Two groups were distinguished: those who had returned to work during the 3 years (n=113; 79.1%) and those who had not (n=28; 19.9%). The groups were compared on socio-occupational and accident-related medical factors at 3 years post-accident, by univariate analysis on Chi(2) or Fisher test, and multivariate analysis on a generalized linear model. RESULTS: Being separated, widowed or divorced at the time of the accident, initial head, face and lower-limb lesion severity, New injury severity score(3) 16, onset of post-traumatic stress disorder, persistence of intense pain and perceived poor quality of life and health status at 3 years post-accident emerged as factors associated with non-return to work on univariate analysis. On multivariate analysis, severity of initial head lesions, persistence of intense pain at 3 years and onset of post-traumatic stress disorder remained significant factors for non-return to work 3 years after severe road-accident injury. DISCUSSION/CONCLUSION: Chronic pain and post-traumatic stress disorder appeared in this study to be the main factors on which action could be taken. Early adapted treatment of these factors could facilitate return to work in victims of severe injury.Copyright © 2016. Published by Elsevier Masson SAS. Language: en

Background Spinal growth disease is commonly known as “Scheuermann's disease” (SD) from the Danish physician who first described this illness. The prevalence is 1 to 8% and resulting in spinal pains, spinal deformations, vertebral and discal alteration. The conservative treatment occupies an important place in the care of patients to fight against spinal deformations and treating mechanical pains. Objectives The main objective is to evaluate the results of orthopedic treatment on clinical and laboratory functional consequences of SD on the dorsal spine, thoracolumbar and lumbar vertebra. The secondary objective is to know the impact of this disease on disability and quality of life away from the removal of the corset. Population and methods Sixty-four teenagers (37 boys [58%] and 27 girls [42%]), the average age at treatment being 14.4 years, were evaluated clinically (pain, clinical examination data) and radiologically (pelvic and spinal parameters, evolution of the deformation of the apical vertebra) at the beginning of treatment, at the end and with the biggest distance. A long time after the removal of the corset, a disability survey (Quebec disability scale) and quality of life (SF36) is mailed to patients. Results Thoracic location of the SD (69%), thoraco-lumbar vertebra (20%), lumbar vertebra (3%), complex (8%). The pain on the spine is significantly improved on the EVA decreasing from 30% before treatment to 2% at the ablation of the brace then to 4% with distance. Radiological correction of the thoracic and thoraco-lumbar kyphosis. Discussion/conclusion The orthopaedic treatment is effective on the teenagers spinal pain treated for Scheuermann's disease. The efficiency of the orthopaedic treatment must be discussed according to the location of the SD: thoracic, thoraco-lumbar or lumbar. It is necessary to define more specifically the expected objectives of the conservative treatment of the SD during growth concerning the pain, the correction of the sagittal curvatures and/or the repair of the vertebral damage and if possible disc damage too.