Retrospective analysis and retrospective follow-up.
Spinal cord injury (SCI) patients have today a nearly normal lifespan. Avoidance of medical complications is key to this end. The aim of the study was to analyse health in individuals surviving 25 years or more after traumatic SCI in Stockholm and Florence, and compare medical complications.
Data from the databases of the Spinal Unit of Florence and from the Spinalis, Stockholm were analysed. Patients included were C2-L 2, American Spinal Cord Association (ASIA) Impairment Scale (AIS) A-C, and =25 years post traumatic SCI. Patients underwent a thorough neurological and general examination, and were interviewed about medical events during those years. Analysed data include: gender, age at injury, current age, neurological level, AIS, cause of injury, presence of neuropathic pain (NP), and spasticity and medical complications.
A total of 66 Italian patients and 74 Swedish patients were included. The only statistical difference between the groups was cause of injury due to falls was higher in the Florence group (P
The aim of the study was to explore the communication experiences of key communications partners (CPs) of individuals receiving home mechanical ventilation (HMV), with particular emphasis on the possibilities, difficulties and limitations CPs experienced in communication, possible support given to facilitate communication and exploring what made a skilled communicator.
A qualitative research design using interviews was used. The participants included 19 key CPs of individuals receiving HMV.
The analysis resulted in five themes: Encountering communication limitations, Functional communication strategies, Being a communication facilitator, Role insecurity and Emotional reactions and coping. The findings revealed that CPs needed to develop partly new reference frames for communication. In particular, participants emphasised the need to understand and interpret subtle details in the communicative interaction.
The findings are discussed in the light of previous research, in particular an earlier study exploring another perspective; the ventilator-supported individuals' experiences of communication. Issues relating to the educational needs of CPs of individuals receiving HMV are discussed. The results are intended to enhance understanding of the challenges that individuals receiving HMV and their CPs face with communication, which should be of relevance not only to speech therapists, but for all healthcare practitioners in the field of HMV.
The comprehensive care of patients with traumatic spinal cord injuries (SCI) necessitates, among other things, a structured, life-long follow up. The high consumption of medical care in chronic SCI patients, often a result of diseases affecting many different organ systems, soon causes the cumulated medical documentation to be extensive and therefore hard to survey. The possibilities for rational patient management, adequate quality assurance, and clinical research may improve considerably by computerisation of medical records. A computerised medical records system for SCI has recently been developed, using a semistructured medical record format for data input and a medical entity dictionary for facilitated data storage and retrieval. The principles for developing this computer-assisted follow up system are described.
To determine categories of coping the first year after injury used by 24 young adults who sustained a spinal cord injury (SCI) during adolescence (11-15 years).
Content analysis using the existing theories of coping as a framework, including the instrument BriefCOPE-a deductive category application. The analysis looked critically at comments in the interviews that reflected attempts to cope with the injury during the first post-injury year.
All 14 of the categories of coping described by the BriefCOPE were included in the interviews at least once, except 'self-blame', which was not used by any interviewee. In addition to the predefined categories of the BriefCOPE, three new coping categories emerged from the interviews: fighting spirit, downward comparison and helping others.
Adolescents who sustain SCIs use a variety of strategies to help them to cope with the consequences of the injury. Many of these coping strategies are similar to those used by others facing stresses, but it is instructive to hear, in their own words, how young adults recall the coping strategies they used as adolescents when they were injured and also how they conceptualized the process of coping. This information can be useful in helping future patients.
All cases of motor neuron disease (MND), encompassing amyotrophic lateral sclerosis (ALS), progressive bulbar paralysis (PBP) and progressive spinal muscular atrophy (PSMA), in northern Sweden, diagnosed between 1969-1980 have been analysed. 128 cases were found, corresponding to an average annual incidence rate of 1.67 per 100,000. The prevalence on December 31, 1980 was 4.8 per 100,000. Age-specific incidence rates were higher in the high age groups with a maximum at 60-64 years for males, at 70-74 years for females and at 65-69 years for the sexes combined. The median age at onset was 61 years. Clustering was not found in mining districts and overrepresentation of miners and stone treaters was not observed. Minor differences in incidence rates, as measured by the standardized morbidity ratio, SMR, were found between the inland, coastal and mountain areas. The median survival time after onset of disease was 32 months for ALS, 30 months for PBP and 70 months for PSMA. The combined survival rate for all MND cases was 28% after 5 years and 15% after 10 years. The male to female ratio was 1.1:1, and 4.7% were familial cases.
The aim of this study was to investigate how adults with spinal cord injury assess their satisfaction regarding various aspects and use of their manual wheelchair.
The Quebec User Evaluation of Satisfaction with Assistive Technology (QUEST 2.0) together with seven additional questions was sent to 205 adults with SCI.
One hundred and twenty-four responses were available. The QUEST 2.0 showed a high level of satisfaction with manual wheelchair properties. However, the respondents were less satisfied with the services offered. Ease of use and comfort were identified as most important. Eighty-nine percent of the respondents rated their level of satisfaction as 'quite satisfied' or 'very satisfied' in ease of using a manual wheelchair compared with 68% of the respondents that were 'quite satisfied' or 'very satisfied' with the level of comfort. A greater satisfaction of ease in propulsion indoors compared with sitting comfort in various activities was found.
A discrepancy was shown between users not being as satisfied with comfort in sitting in various activities opposed to satisfaction with propulsion. This indicates the need for increased knowledge and developments concerning individual solutions, incorporating comfort as well as ease of use of a manual wheelchair.