Clinical features of electric powered indoor/outdoor wheelchair users with spinal cord injuries: A cross-sectional study.

This article aims to describe the characteristics of those with a primary diagnosis of spinal cord injury (SCI) attending a specialist wheelchair service providing electric powered indoor/outdoor chairs (EPIOCs). This cross-sectional study, with retrospective review of electronic and case note records, explores the complexities of additional clinical features associated with SCI and disability influencing prescription. Data were extracted under three themes; demographics, diagnostic/clinical information and wheelchair factors. There were 57 participants (35 men, 22 women) (mean age 53.51 ± 11.93, range 29-79 years) comprising 20 with paraplegia, 34 with tetraplegia and 3 with undocumented level. Paraplegics were significantly older than tetraplegics (p < 0.05). Thirty users had a complete SCI (mean age 49.87 ± 12.27 years) and 27 had another SCI lesion (mean age 57.56 ± 10.32 years). Those with a complete SCI were significantly younger than the rest (p < 0.02). Only 10 (9 tetraplegic) had SCI as the sole diagnosis. Twenty (15 tetraplegic) had one additional clinical feature, 14 had 2-3 (6 tetraplegic) and 13 (4 tetraplegic) had 4 or more. Ten users required specialised seating, 22 needed tilt-in-space EPIOCs while six required complex controls. The range and complexity of wheelchair and seating needs benefitted from a holistic assessment and prescription by a specialist multidisciplinary team.

Problematic clinical features of children and adults with cerebral palsy who use electric powered indoor/outdoor wheelchairs: A cross-sectional study.

This article aims to describe the clinical features of electric powered indoor/outdoor wheelchair (EPIOC) users with cerebral palsy (CP) that are problematic to optimal prescription and to explore comorbidities, features of CP, and conditions secondary to disability impacting on equipment provision for children and adults. The method is a cross-sectional study of EPIOC users (n = 102) with a primary diagnosis of CP. This is a retrospective review of electronic and case note records of EPIOC recipients attending a specialist wheelchair service in 2007-2008. Records were reviewed by a rehabilitation consultant. Data were extracted under three themes; demographic, diagnostic/clinical and wheelchair factors. There were 48 males mean age 27.5 (range 8-70, SD 13.9) years and 54 females, mean age 29.5 (range 7-68, SD 14.6) years with CP. Sixteen comorbidities, nine features of CP, and five features of disability influenced wheelchair prescription. Sixty-four users were provided with specialized seating (SS) and 47 with tilt-in-space (TIS) seats. Complex controls were provided to 16 users, 12 tray-mounted. The majority of users had both SS and TIS. Powered wheelchair prescription has important therapeutic roles in clinical management in addition to enhancing mobility, independence and participation. Clinical features such as spasticity and problematic pain appeared less well managed in adults than in children.

Rare diseases: matching wheelchair users with rare metabolic, neuromuscular or neurological disorders to electric powered indoor/outdoor wheelchairs (EPIOCs).

PURPOSE: To describe the clinical features of electric powered indoor/outdoor wheelchair (EPIOC) users with rare diseases (RD) impacting on EPIOC provision and seating. METHOD: Retrospective review by a consultant in rehabilitation medicine of electronic and case note records of EPIOC recipients with RDs attending a specialist wheelchair service between June 2007 and September 2008. Data were systematically extracted, entered into a database and analysed under three themes; demographic, diagnostic/clinical (including comorbidity and associated clinical features (ACFs) of the illness/disability) and wheelchair factors. RESULTS: Fifty-four (27 male) EPIOC users, mean age 37.3 (SD 18.6, range 11-70) with RDs were identified and reviewed a mean of 64 (range 0-131) months after receiving their wheelchair. Diagnoses included 27 types of RDs including Friedreich's ataxia, motor neurone disease, osteogenesis imperfecta, arthrogryposis, cerebellar syndromes and others. Nineteen users had between them 36 comorbidities and 30 users had 44 ACFs likely to influence the prescription. Tilt-in-space was provided to 34 (63%) users and specialised seating to 17 (31%). Four users had between them complex control or interfacing issues. CONCLUSIONS: The complex and diverse clinical problems of those with RDs present unique challenges to the multiprofessional wheelchair team to maintain successful independent mobility and community living. Implications for Rehabilitation Powered mobility is a major therapeutic tool for those with rare diseases enhancing independence, participation, reducing pain and other clinical features. The challenge for rehabilitation professionals is reconciling the physical disabilities with the individual's need for function and participation whilst allowing for disease progression and/or growth. Powered wheelchair users with rare diseases with a (kypho) scoliosis require a wheelchair system that balances spine stability and movement to maximise residual upper limb and trunk function. The role of specialised seating needs careful consideration in supporting joint derangements and preventing complications such as pressure sores.

Assessing pain intensity following spinal cord injury: should rating scales measure 'overall' or 'maximal' values?

Rating scales (RSs) are important for the assessment of pain intensity (PI) following a spinal cord injury (SCI). Using a Graphic Rating Scale, this pilot study measured an 'overall' level of PI repeated about every 2 h over 1 day and compared it with maximal PI scores reported previously. Patients were categorized into severity groups according to the overall Graphic Rating Scale score at initial assessment (T0). Eight men and six women (mean age 53.1; range 28-75) participated. Comparison of the overall PI scores and their changes over time with the maximal PI scores reported previously showed loss of patients in the severe group and less pronounced PI changes over time. Rating scales used in spinal cord injury services should measure maximal pain experienced 'right now' to eliminate potential averaging out of pain over time, which might allow physicians to assist patients in understanding their pain and begin their adjustment.

Problematic clinical features of powered wheelchair users with severely disabling multiple sclerosis.

PURPOSE: The aim of this study is to describe the clinical features of powered wheelchair users with severely disabling multiple sclerosis (MS) and explore the problematic clinical features influencing prescription. METHOD: Retrospective review of electronic and case note records of recipients of electric-powered indoor/outdoor powered wheelchairs (EPIOCs) attending a specialist wheelchair service between June 2007 and September 2008. Records were reviewed by a consultant in rehabilitation medicine, data systematically extracted and entered into a computer database. Further data were entered from clinical records. Data were extracted under three themes; demographic, diagnostic, clinical and wheelchair factors. RESULTS: Records of 28 men mean age 57 (range 37-78, SD 12) years and 63 women mean age 57 (range 35-81, SD 11) years with MS were reviewed a mean of 64 (range 0-131) months after receiving their wheelchair. Twenty two comorbidities, 11 features of MS and 8 features of disability were thought to influence wheelchair prescription. Fifteen users were provided with specialised seating and 46 with tilt-in-space seats. CONCLUSIONS: Our findings suggest that people with severe MS requiring an EPIOC benefit from a holistic assessment to identify problematic clinical features that influence the prescription of the EPIOC and further medical and therapeutic interventions. IMPLICATIONS FOR REHABILITATION: People with multiple sclerosis (MS), referred for an EPIOC, require a full clinical assessment to identify problematic clinical features that are potentially treatable and/or can be accommodated through specialised seating and tilt. The beneficial effects of TIS should be considered for all EPIOC users with MS and particularly for those with comorbidity Poorly controlled spasticity, when identified in people with MS, should be managed through positioning in the chair, pressure-relieving cushion and referral for medical management.

Pain management following new and long-standing spinal cord injury: a pilot study of changes in pain intensity experienced during the day.

The aim of the study was to examine variations in pain intensity during the day experienced by patients with spinal cord injury. Fourteen consecutive patients had clinical and demographic data recorded. Pain intensity was recorded using a Graphic Rating Scale (GRS) at 2-3-h intervals. Patients were grouped according to maximum GRS into mild and severe groups at assessment (T0). Changes of one-third in GRS were deemed clinically significant. Eight men and six women (mean age 53.1; SD 16.5; range 28-75) were studied. Seven patients with mild pain tended to deteriorate and those with severe pain to improve. Eight patients demonstrated clinically significant changes. These findings suggest inadequate pain control early morning for one group and increasing pain during the day for another. Use of such simple scores over time would enhance pain rehabilitation for all spinal cord injury patients. Usual GRS reporting may mask clinically significant, treatable, changes in pain.

Recipients of electric-powered indoor/outdoor wheelchairs provided by a national health service: a cross-sectional study.

OBJECTIVE: To describe the characteristics across all ages of powered wheelchair users and the assistive technology prescribed by a regional specialist wheelchair service. DESIGN: Cross-sectional study. SETTING: Regional wheelchair service. PARTICIPANTS: Electric-powered indoor/outdoor wheelchair (EPIOC) users (N=544) with 262 boys and men (mean age ± SD, 41.7±20.7y; range, 8-82y) and 282 girls and women (mean age ± SD, 47.2±19.7y; range, 7-92y). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Demographic, clinical/diagnostic details of EPIOC recipients, including pain, (kypho)scoliosis, and ventilators. Technical features, including specialized (adaptive) seating, tilt in space, and modified control systems. Factors were related to age groups: 1 (0-15y), 2 (16-24y), 3 (25-54y), 4 (55-74y), and 5 (≥75y). RESULTS: Neurologic/neuromuscular conditions predominated (81%) with cerebral palsy (18.9%) and multiple sclerosis (16.4%). Conditions presenting at birth or during childhood constituted 39%. Of the participants, 99 had problematic pain, 83 had (kypho)scoliosis, and 11 used ventilators. Specialized (adaptive) seating was provided to 169 users (31%); most had cerebral palsy or muscular dystrophy. Tilt in space was used by 258 (53%) participants. Younger people were more likely to receive tilt in space than older ones. Only 92 had specialized (adaptive) seating and tilt in space (mean age ± SD, 29±17.8y; range, 8-72y). Of the participants, 52 used modified control systems. CONCLUSIONS: The diversity of EPIOC users across age and diagnostic groups is shown. Their complex interrelations with these technical features of EPIOC prescriptions are explored. Younger users were more complex because of age-related changes. This study provides outcomes of the EPIOC prescription for this heterogeneous group of very severely disabled people.

Attitudes of patients toward adoption of 3D technology in pain assessment: qualitative perspective.

BACKGROUND: Past research has revealed that insufficient pain assessment could, and often, has negative implications on the provision of quality health care. While current available clinical approaches have proven to be valid interventions, they are expensive and can often fail in providing efficient pain measurements. The increase in the prevalence of pain calls for more intuitive pain assessment solutions. Computerized alternatives have already been proposed both in the literature and in commerce, but may lack essential qualities such as accuracy of the collected clinical information and effective patient-clinician interaction. In response to this concern, 3-dimensional (3D) technology could become the innovative intervention needed to support and improve the pain assessment process. OBJECTIVE: The purpose of this analysis was to describe qualitative findings from a study which was designed to explore patients' perceptions of adopting 3D technology in the assessment of their pain experience related to important themes that might positively or negatively influence the quality of the pain assessment process. METHODS: The perceptions of 60 individuals with some form of pain in the area of Greater London were collected through semi-structured interviews. Of the 60 respondents, 24 (43%) produced usable responses and were analyzed for content using principles of the grounded theory approach and thematic analysis, in order to gain insight into the participants' beliefs and attitudes towards adopting 3D technology in pain assessment. RESULTS: The analysis identified 4 high-level core themes that were representative of the participants' responses. These themes indicated that most respondents valued "the potential of 3D technology to facilitate better assessment of pain" as the most useful outcome of adopting a 3D approach. Respondents also expressed their opinions on the usability of the 3D approach, with no important concerns reported about its perceived ease of use. Our findings finally, showed that respondents appreciated the perceived clinical utility of the proposed approach, which could further have an influence on their intention to use it. CONCLUSIONS: These findings highlighted factors that are seen as essential for improving the assessment of pain, and demonstrated the need for a strong focus on patient-clinician communication. The participants of this analysis believed that the introduction of 3D technology in the process might be a useful mechanism for such a positive health care outcome. The study's findings could also be used to make recommendations concerning the potential for inclusion of 3D technology in current clinical pain tools for the purpose of improving the quality of health care.

An interactive 3-D application for pain management: Results from a pilot study in spinal cord injury rehabilitation.

Research on pain following spinal cord injury (SCI) has revealed that patients not only experience several types of pain that could prove to be challenging to address, but also that each individual can interpret such pain in different subjective ways. In this paper we introduce a 3-D system for facilitating the efficient management of pain, and thus, supporting clinicians in overcoming the aforementioned challenges. This system was evaluated by a cohort of 15 SCI patients in a pilot study that took place between July and October 2010. Participants reported their experiences of using the 3-D system in an adapted version of the System Usability Scale (SUS) questionnaire. Statistically significant results were obtained with regards to the usability and efficiency of the 3-D system, with the majority of the patients finding it particularly useful to report their pain. Our findings suggest that the 3-D system can be an efficient tool in the efforts to better manage the pain experience of SCI patients.

The pain experiences of powered wheelchair users.

PURPOSE: To explore the experience of pain and discomfort in users of electric-powered indoor/outdoor wheelchairs (EPIOCs) provided by a National Health Service. METHODS: EPIOC users receiving their chair between February and November 2002 (N = 74) were invited to participate in a telephone questionnaire/interview and 64 (aged 10-81 years) agreed. Both specific and open-ended questions examined the presence of pain/discomfort, its severity, minimizing and aggravating factors, particularly in relation to the EPIOC and its use. RESULTS: Most EPIOC users described experiences of pain with 17% reporting severe pain. Over half felt their pain was influenced by the wheelchair and few (25%) considered their chair eased their symptoms. The most common strategy for pain relief was taking medication. Other self-help strategies included changing position, exercise and complementary therapies. Respondents emphasized the provision of backrests, armrests, footrests and cushions which might alleviate or exacerbate pain, highlighting the importance of appropriate assessment for this high dependency group. CONCLUSIONS: Users related pain to their underlying medical condition, their wheelchair or a combination of the two. User feedback is essential to ensure that the EPIOC meets health needs with minimal pain. This becomes more important as the health condition of users changes over time.

Electric powered wheelchairs for those with muscular dystrophy: problems of posture, pain and deformity.

PURPOSE: To identify areas of difficulty encountered by a regional wheelchair service in providing Electric Powered Indoor/outdoor wheelchairs (EPIOCs) to those with muscular dystrophy (MD) in the early years of their provision--particularly posture, pain and deformity. METHOD: Wheelchair service records of all users between April 1997 and March 2000 were reviewed retrospectively and issues relating to weakness, pain/discomfort, deformities, other medical issues, weight change, function, posture and driving were documented on a purpose-designed proforma. Adjustments and modifications were documented over the 2-year period following chair delivery. RESULTS: Of 325 EPIOC users on the departmental database, 29 had MD (15 Duchenne's), whose users charts were reviewed. Almost 80% of users needed clinical review within 2 years, mostly due to a scoliosis. Other problems were postural (66%), medical (48%), pain (31%), functional (24%) and weight change (14%). The commonest prescriptions were for specialised seating (24%), lateral supports, headrests and footrests (21% each). CONCLUSIONS: The rate of disease progression was not planned for by the service. Most clients were seen in response to deterioration, rather than anticipating it. Planned reviews within 1 year appear essential for teenagers with MD with the dual issues of rapid maturation and progressive disease.

Visualization of back pain data--a 3-D solution.

Traditional approaches to gathering and visualizing pain data rely on two-dimensional (2-D) human body models, where different types of sensation are recorded with various monochrome symbols. We propose an alternative that uses a three-dimensional (3-D) representation of the human body, which can be marked in color to visualize and record pain data.

Young people's experiences using electric powered indoor - outdoor wheelchairs (EPIOCs): potential for enhancing users' development?

PURPOSE: To examine the experiences of severely physically disabled young people who use electric powered indoor - outdoor chairs (EPIOCs). METHODS: A priori interview questions examined young people's functioning with EPIOCs, pain and discomfort with EPIOC use and accidents or injuries resulting from EPIOC use. Eighteen young people (13 males and five females) aged 10 - 18 (mean 15) years were interviewed by telephone using a qualitative framework approach. Participants were interviewed 10 - 19 (mean 14.5) months after delivery of the chair. Diagnoses included muscular dystrophy (n = 10), cerebral palsy (n = 5), and 'other' (n = 3). RESULTS: Many children reported positive functioning following EPIOC use, including increased independence and social activities like wheelchair football. However, EPIOC use was also associated with pain and discomfort, as well as perceived lack of safety, and minor accidents. Most young people and their families were fairly satisfied with the service and provision of their wheelchairs. CONCLUSIONS: The findings suggest that the development of disabled young people may benefit from the use of electric powered indoor/outdoor wheelchairs, although the advantages may come at certain costs to young people's perceived and real safety. Recommendations to powered wheelchair providers include the demonstrated need for additional driving training as these young people mature.