Development of the Wheelchair Interface Questionnaire and initial face and content validity.

BACKGROUND: Because resources are limited in low- and middle-income countries (LMIC), the development of outcome measures is of interest. Wheelchair outcome measures are useful to support evidence-based practice in wheelchair provision. OBJECTIVES: The Wheelchair Interface Questionnaire (WIQ) is being developed to provide a professional perspective on the quality of the interface between a wheelchair and its user. This article discusses the development of the WIQ and its face and content validity. METHOD: During field studies in Kenya, we sought to include professional report data on the wheelchair-user interface that could be analysed to inform design changes. None of the existing measures was focused on the interface between users and their wheelchairs. The WIQ was developed to meet this need. To investigate face and content validity, 24 experienced wheelchair professionals participated in a study that included two rounds of an online survey and a focus group in Kenya. RESULTS: Responses were categorised by topic and the WIQ was modified following each iteration. Participants affirmed the usefulness of a brief professional report measure to provide a snapshot of the user-wheelchair interface. Participants emphasised the importance of brevity, wide applicability and provision of specific feedback for wheelchair modification or design changes. The focus group agreed that the final version provided useful data and was applicable to virtually all wheelchair users in LMIC. CONCLUSION: These preliminary studies indicate initial face and content validity of the WIQ as a method for providing a professional perspective on the interface between a user and his or her wheelchair. KEYWORDS: Outcome measure; wheelchair assessment; user-wheelchair interface; wheelchair appropriateness; professional report.

A longitudinal study assessing the maintenance condition of cadres of four types of wheelchairs provided in low-resource areas.

Wheelchair breakdowns increase the risk of injury and limit the mobility of wheelchair users. In the endeavour to meet the enormous global need for wheelchairs, manufacturers of wheelchairs for low-resource settings face a cost-benefit tension between affordability and durability. Field studies are needed to provide feedback on durability. Four manufacturers provided cadres of wheelchairs to the organization providing rehabilitation to students at a boarding school for children with disabilities in a low-resource area. The Wheelchair Components Questionnaire for Condition was used to evaluate wheelchair maintenance condition at several time intervals after fitting. Because the maintenance regime was not identical for the four wheelchair types, wheelchair types were not compared. Analysis of variance indicated differences in condition across time and between wheelchair components. Tukey's simultaneous comparison of means indicated that across the entire group, brakes, seats, casters and foot rests received lower ratings than frame. Preliminary data after each iteration of this study were provided to manufactures and resulted in responsive design changes. Implications for Rehabilitation Longitudinal studies with the Wheelchair Components Questionnaire for Condition (WCQc) have enabled manufacturers to make responsive design improvements. Additional studies could be done with other wheelchair types to result in responsive positive design changes for those wheelchairs as well. The WCQc can be used in studies on wheelchair condition even when records of repair history are not reliably available, a situation which is not uncommon in low-resource areas. Data sets collected at an individual clinic uses the WCQc could focus attention on wheelchair components needing regular repair. With that data in mind, the maintenance regime could be modified to respond and in so doing improve wheelchair condition and reduce loss of mobility or risk of injury. Organizations involved in funding wheelchairs for a particular location could use data from longitudinal studies done with the WCQc at that location to inform purchasing decisions.

Preliminary inter-rater reliability of the wheelchair components questionnaire for condition.

PURPOSE: The Wheelchair Components Questionnaire for Condition (WCQ-C) enables the collection of data on wheelchair maintenance condition and durability in resource-limited environments. It can be used in large studies to indicate typical patterns of wear at a location, or for a type of wheelchair. It can also be used in clinical settings as an evidence based indication that a wheelchair may need repair or replacement. This type of data can enable effective use of limited funds by wheelchair providers, manufacturers and users. The goal of this study was to investigate the inter-rater reliability of the WCQ-C. METHODS: Two therapists from North America who have worked extensively in low-resource areas used the WCQ-C to independently evaluate 46 wheelchairs at a primary school for children with disabilities in Kenya. RESULTS: Mean scores of ratings for each wheelchair by the two raters were used to calculate a two-way random interclass correlation coefficient. A value of 0.82 with a 95% confidence interval of 0.67-0.89 indicated good preliminary reliability. CONCLUSION: Preliminary results indicate that the WCQ-C is a reliable method of assessment. Additional studies are needed with larger and more diverse groups of raters. Because WCQ-C findings are specific to wheelchair wear and maintenance at each location, studies at other locations are also needed. Implications for rehabilitation The importance of inter-rater reliability testing in confirming the reliability of an assessment tool such as the WCQ-C. The use of the WCQ-C to monitor wheelchair condition in low-resource settings and other field settings. If used at regular interval can produce data that can be used to describe typical changes over time at each individual setting. This could enable proactive planning at that setting to avoid typical breakdowns and the injuries or clinical complications that could result. The use of the WCQ-C to monitor the condition of groups of wheelchairs of the same type. It can describe typical patterns of wear and failure in a way that enables responsive change by manufacturers and designers. This enables more effective use of limited funds. On an individual basis, the use of the WCQ-C to alert users and health professionals of a need for repair or replacement. This could minimize the clinical problems and accidents that can result from wheelchair breakdown. Assessment of a wheelchair using the WCQ-C could provide evidence based data to insurance companies or wheelchair providers which indicates a need for wheelchair repair or replacement.

Test-retest reliability and construct validity of the Aspects of Wheelchair Mobility Test as a measure of the mobility of wheelchair users.

BACKGROUND: The Aspects of Wheelchair Mobility Test (AWMT) was developed for use in a repeated measures format to provide comparative effectiveness data on mobility facilitated by different wheelchair types. It has been used in preliminary studies to compare the mobility of wheelchairs designed for low-resource areas and is intended to be simple and flexible enough so as to be used in low-technology settings. However, to reliably compare the impact of different types of wheelchairs on the mobility of users, a measure must first be a reliable and valid measure of mobility. METHODS: This study investigated the test-retest reliability and concurrent validity for the AWMT 2.0 as a measure of mobility. For reliability testing, participants in a low-resource setting completed the tests twice in their own wheelchairs at least one week apart. For concurrent validity, participants also completed the Wheelchair Skills Test Questionnaire (WST-Q), a related but not identical validated assessment tool. RESULTS: Concurrent validity was indicated by a significant positive correlation with an r value of 0.7 between the WST-Q capacity score and the AWMT 2.0 score. Test-retest reliability was confirmed by an intraclass correlation coefficient greater than 0.7 between the two trials. CONCLUSION: Results support the preliminary reliability and validity of the AWMT 2.0, supporting its effectiveness in comparing the mobility provided by different wheelchair types. This information can be used to enable effective use of limited funds for wheelchair selection at individual and organisational scales.

Discriminatory validity of the Aspects of Wheelchair Mobility Test as demonstrated by a comparison of four wheelchair types designed for use in low-resource areas.

BACKGROUND: Comparative effectiveness research on wheelchairs available in low-resource areas is needed to enable effective use of limited funds. Mobility on commonly encountered rolling environments is a key aspect of function. High variation in capacity among wheelchair users can mask changes in mobility because of wheelchair design. A repeated measures protocol in which the participants use one type of wheelchair and then another minimises the impact of individual variation. OBJECTIVES: The Aspects of Wheelchair Mobility Test (AWMT) was designed to be used in repeated measures studies in low-resource areas. It measures the impact of different wheelchair types on physical performance in commonly encountered rolling environments and provides an opportunity for qualitative and quantitative participant response. This study sought to confirm the ability of the AWMT to discern differences in mobility because of wheelchair design. METHOD: Participants were wheelchair users at a boarding school for students with disabilities in a low-resource area. Each participant completed timed tests on measured tracks on rough and smooth surfaces, in tight spaces and over curbs. Four types of wheelchairs designed for use in low-resource areas were included. RESULTS: The protocol demonstrated the ability to discriminate changes in mobility of individuals because of wheelchair type. CONCLUSION: Comparative effectiveness studies with this protocol can enable beneficial change. This is illustrated by design alterations by wheelchair manufacturers in response to results.

Preliminary reliability and internal consistency of the Wheelchair Components Questionnaire for Condition.

Wheelchair durability and maintenance condition are key factors of wheelchair function. Durability studies done with double drum and drop testers, although valuable, do not perfectly imitate conditions of use. Durability may be harvested from clinical records; however, these may be inconsistent because protocols for recording information differ from place to place. Wheelchair professionals with several years of experience often develop a good eye for wheelchair maintenance condition. The Wheelchair Components Questionnaire for Condition (WCQc) was developed as a professional report questionnaire to provide data specifically on the maintenance condition of a wheelchair. The goal of this study was to obtain preliminary test-retest reliability and internal consistency for the WCQc. Participants were a convenience sample of wheelchair professionals who self-reported more than two years' of wheelchair experience, and completed the WCQc on the same wheelchair twice. Results indicated preliminary reliability and internal consistency for domain related questions and the entire questionnaire. Implications for rehabilitation The WCQc, if administered routinely at regular intervals, can be used to monitor wheelchair condition and alert users and health professionals about the need for repair or replacement. The WCQc is not difficult to use, making early monitoring for wear or damage more feasible. The earlier a tool can detect need for maintenance, the higher likelihood that appropriate measures may be employed in a timely fashion to maximize the overall durability of wheelchairs and minimize clinical complications. Keeping wheelchairs appropriately maintained allows users to minimize effort expended when using them, and maximize their function. It also lowers the risk of injury due to component failure. When assessing groups of similar wheelchairs, organizations involved in funding wheelchairs can use data from the WCQc to make purchase decisions based on durability, and manufacturers can use WCQc data for responsive design change.

Comparison between performances of three types of manual wheelchairs often distributed in low-resource settings.

PURPOSE: This study was conducted to compare the performance of three types of chairs in a low-resource setting. The larger goal was to provide information which will enable more effective use of limited funds by wheelchair manufacturers and suppliers in low-resource settings. METHODS: The Motivation Rough Terrain and Whirlwind Rough Rider were compared in six skills tests which participants completed in one wheelchair type and then a day later in the other. A hospital-style folding transport wheelchair was also included in one test. For all skills, participants rated the ease or difficulty on a visual analogue scale. For all tracks, distance traveled and the physiological cost index were recorded. Data were analyzed using repeated measures analysis of variance. RESULTS: The Motivation wheelchair outperformed Whirlwind wheelchair on rough and smooth tracks, and in some metrics on the tight spaces track. Motivation and Whirlwind wheelchairs significantly outperformed the hospital transport wheelchair in all metrics on the rough track skills test. CONCLUSION: This comparative study provides data that are valuable for manufacturers and for those who provide wheelchairs to users. The comparison with the hospital-style transport chair confirms the cost to users of inappropriate wheelchair provision. Implications for Rehabilitation For those with compromised lower limb function, wheelchairs are essential to enable full participation and improved quality of life. Therefore, provision of wheelchairs which effectively enable mobility in the cultures and environments in which people with disabilities live is crucial. This includes low-resource settings where the need for appropriate seating is especially urgent. A repeated measures study to measure wheelchair performances in everyday skills in the setting where wheelchairs are used gives information on the quality of mobility provided by those wheelchairs. This study highlights differences in the performance of three types of wheelchairs often distributed in low-resource settings. This information can improve mobility for wheelchair users in those settings by enabling wheelchair manufacturers to optimize wheelchair design and providers to optimize the use of limited funds.

A paired outcomes study comparing two pediatric wheelchairs for low-resource settings: the regency pediatric wheelchair and a similarly sized wheelchair made in Kenya.

This comparative study of two similar wheelchairs designed for less-resourced settings provides feedback to manufacturers, informing ongoing improvement in wheelchair design. It also provides practical familiarity to clinicians in countries where these chairs are available, in their selection of prescribed wheelchairs. In Kenya, 24 subjects completed 3 timed skills and assessments of energy cost on 2 surfaces in each of 2 wheelchairs: the Regency pediatric chair and a pediatric wheelchair manufactured by the Association of the Physically Disabled of Kenya (APDK). Both wheelchairs are designed for and distributed in less-resourced settings. The Regency chair significantly outperformed the APDK chair in one of the energy cost assessments on both surfaces and in one of three timed skills tests.

The CNDR: collaborating to translate new therapies for Canadians.

BACKGROUND: Patient registries represent an important method of organizing "real world" patient information for clinical and research purposes. Registries can facilitate clinical trial planning and recruitment and are particularly useful in this regard for uncommon and rare diseases. Neuromuscular diseases (NMDs) are individually rare but in aggregate have a significant prevalence. In Canada, information on NMDs is lacking. Barriers to performing Canadian multicentre NMD research exist which can be overcome by a comprehensive and collaborative NMD registry. METHODS: We describe the objectives, design, feasibility and initial recruitment results for the Canadian Neuromuscular Disease Registry (CNDR). RESULTS: The CNDR is a clinic-based registry which launched nationally in June 2011, incorporates paediatric and adult neuromuscular clinics in British Columbia, Alberta, Ontario, Quebec, New Brunswick and Nova Scotia and, as of December 2012, has recruited 1161 patients from 12 provinces and territories. Complete medical datasets have been captured on 460 "index disease" patients. Another 618 "non-index" patients have been recruited with capture of physician-confirmed diagnosis and contact information. We have demonstrated the feasibility of blended clinic and central office-based recruitment. "Index disease" patients recruited at the time of writing include 253 with Duchenne and Becker muscular dystrophy, 161 with myotonic dystrophy, and 71 with ALS. CONCLUSIONS: The CNDR is a new nationwide registry of patients with NMDs that represents an important advance in Canadian neuromuscular disease research capacity. It provides an innovative platform for organizing patient information to facilitate clinical research and to expedite translation of recent laboratory findings into human studies.

Medical student reporting of factors affecting pre-clerkship changes in empathy: a qualitative study.

OBJECTIVE: To isolate factors that medical students identify as possibly affecting empathy in pre-clerkship years of medical school. METHODS: 12 students in their second year of medical school at Queen's University were randomly selected and asked to participate in semi-structured interviews conducted from an ethnographic perspective. RESULTS: Students reported both negative and positive changes in empathy. Negative changes included desensitization and focusing on the disease process, decreased ability to see things from patients' perspectives, and routine responses in emotional situations. These changes occur due to time constraints, objective lessons in empathy, and a changing identity. Positive changes included an increased awareness of the impact of illness, and increased ability to read feelings. These changes result from increased exposure to patients, discussions surrounding the psychosocial impact of illness, and positive role models. CONCLUSION: Students should be made aware of the limitations of objective lessons in empathy, and non-evaluated, implicit lessons should be emphasized when possible. Students should be encouraged to maintain relationships outside of medicine. Aspects of medical school that currently promote empathy should be reinforced, including exposure to patients, opportunities to work closely with positive role models, and practical discussions surrounding the psychosocial impact of illness.

International mobility technology research: a Delphi study to identify challenges and compensatory strategies.

We sought to identify logistical and ethical challenges to performing wheelchair-related research in low- and middle-income countries and to generate a list of compensatory strategies to address these challenges. Thirteen individuals with experience in the field participated in an online Delphi study. The surveys asked participants to identify research challenges, suggest strategies to address the selected challenges, and critique each other's strategies. Participants identified challenges in the use of research techniques, compensation for participation that does not result coercion, oral and written translation materials, funding for research, collaboration with local professionals, and "respect for persons." Effective international mobility research requires time, cultural sensitivity, collaboration, and careful planning. An understanding of these requirements can allow researchers to anticipate and compensate for common pitfalls of their work, thus making the research more productive and beneficial to subjects. Future research is required to verify the general effectiveness of compensatory strategies.

Current state of mobility technology provision in less-resourced countries.

This article reviews mobility technology in less-resourced countries, with reference to people with disabilities in several locations, and describes technology provision to date. It also discusses a recent collaborative study between a United States University and an Indian spinal injuries hospital of Indian wheelchair users' community participation, satisfaction, and wheelchair skills. The data suggest that individuals who received technology from the hospital's assistive technology department experienced increased community participation and improved wheelchair skills. This evidence may have already enabled the hospital to improve Indian governmental policies toward people with disabilities, and it is hoped that future research will benefit other people similarly.

Factors affecting measures of activities and participation in persons with mobility impairment.

PURPOSE: This study examined important factors affecting activities and participation of persons with mobility impairments. METHOD: This mixed methods study employed grounded theory approaches and data conversion to quantify impact of environmental and personal factors on standard measures of activities and participation. Semi-structured interviews of participants with mobility impairments were conducted to identify key factors and the magnitude of their influence on activities of daily living and participation. Participants were individually scored on the Barthel index (BI) and the Participation scale (P-scale); BI scores that would have been obtained without associated factors were estimated. Average cumulative impact of factors on BI and P-scale scores were estimated to identify factors with the greatest numeric impact. RESULTS: Twenty-four participants identified 258 factors that impacted activities. For the BI, adaptive equipment, gait aids, wheelchairs, scooters and home modifications were most influential. For the P-scale, personality, community and home accessibility, level of impairment, mobility aids and transportation were among the most influential. CONCLUSION: Convergent results through various methods suggest that reporting of contextual factors that may affect scores on standardised measures of activities and participation may assist in interpretation, and identification of interventional needs at the individual or system levels.

Comparing consequences of right and left unilateral neglect in a stroke rehabilitation population.

OBJECTIVE: This article details right and left unilateral neglect (UN) in a stroke rehabilitation population. DESIGN: This prospective observational cohort study documented hemipersonal neglect and hemispatial neglect in 309 of 325 stroke rehabilitation patients consecutively admitted over a 28-month period. Shoulder-hand complications, safety concerns, length of stay, discharge function, and discharge destination were documented. RESULTS: Of the 85 with right UN and 113 with left UN, 17.7% had expressive aphasia, and 17.7% had mixed or receptive aphasia. Hemispatial neglect was associated with hemianopsia (29.2% and 31.8% for right and left, respectively). Having both hemipersonal neglect and hemispatial neglect was related to greater safety risk (46.9% vs. 24.3%), greater incidence of shoulder-hand complications (28.3% vs. 9.9%), lower FIM scores (>10 points lower), longer length of stay (8 days), and less likelihood of discharge to home (67.3% vs. 87.4%) than subjects without UN. Results were similar for those with right and left UN. CONCLUSIONS: Right and left UN occur after stroke, can be detected even in the presence of aphasia, and are associated with shoulder-hand problems, lower discharge function, and lower likelihood of discharge home. Having both hemispatial neglect and hemipersonal neglect impacts people more than having either type of UN alone.

Adjusting expectations after spinal cord injury across global settings: a commentary.

PURPOSE: The objective of this paper is to stimulate thought and discussion as to how best to set rehabilitation goals to maximize activities and participation of persons with spinal cord injury, across global settings where circumstances and environments may be widely different. METHOD: A review of literature and commentary are presented. Three points are articulated: (1) rehabilitation professionals need to understand factors that impact upon activities and participation, and need measurement tools that report these factors, in order to better appreciate outcomes in different settings, (2) rehabilitation professionals generally set goals with patients, but current measures of activities and participation do not indicate when or why maximal achievable function is sometimes not chosen, and (3) we need to develop realistic expectations for activities and participation after SCI in settings where current standard outcome chart targets are not feasible, due to socio-economic circumstances. CONCLUSIONS: A standardized approach to reporting measures of activities and participation, along with factors that influence these scores, is required for purposes of comparing rehabilitation outcomes in settings of differing socio-economic environments. In regards to spinal cord injury rehabilitation, an accepted standard of setting achievable rehabilitation goals is required for each level of complete spinal cord injury that could apply in various global settings.

Stroke impairment predictors of discharge function, length of stay, and discharge destination in stroke rehabilitation.

OBJECTIVES: This article presents analytic results from a prospective study of 313 stroke rehabilitation patients, looking at the relative contributions of different stroke impairments toward prediction of discharge function, rehabilitation length of stay, and discharge destination after inpatient rehabilitation. The relationship between number of stroke risk factors and recurrence of strokes during rehabilitation was also evaluated. METHODS: A total of 313 subjects were enrolled consecutively. Information on type of stroke and individual stroke-related impairment was collected prospectively. Recurrent stroke, rehabilitation length of stay, discharge destination, discharge function, and available family support at discharge were documented. RESULTS: Rates of impairment occurrence and coexistence are presented. Analysis using linear (length of stay, discharge function) and logistic (discharge destination) regression revealed significant contributory predictive effects of admission balance, aphasia, number of impairments, and family support on length of stay; admission balance and number of impairments on discharge function; and admission balance, body neglect, and presence of family support on discharge destination. CONCLUSION: In addition to admission function and balance, other factors to consider in predicting length of stay for patients should include the number of stroke-related impairments and family support. For discharge destination prediction, the presence of body neglect should be considered in addition to balance and family support. Evaluation of patients for right-sided neglect and left-sided neglect is important.

The effect of hemispatial neglect on the perception of centre.

Highly variable bisection performance in neglect patients has been attributed to an increased 'zone of indifference'. The indifference zone indicates the discrepancy between two line lengths which are judged as equal in length. Following this argumentation, the central area of a line should be expanded in neglect patients. The present two experiments investigated for the first time the expansion of the central area using a modified version of the Landmark Task. The location of a central or asymmetrical bisection mark on a horizontal line had to be judged (centre/left/right). In both experiments neglect patients, unlike healthy and patient controls, showed clear deficits in judging the location of the mark correctly and tended to judge asymmetrical marks of up to 4 cm as centrally positioned. The results are in agreement with and provide the first clear evidence of an enlarged perceptual zone of indifference in patients with hemispatial visual neglect.

Validation of the Berg Balance Scale as a predictor of length of stay and discharge destination in stroke rehabilitation.

OBJECTIVE: To validate the utility of the Berg Balance Scale (BBS) in predicting length of stay (LOS) and discharge destination for patients admitted to a stroke rehabilitation unit. DESIGN: Prospective study. SETTING: Provincial tertiary inpatient stroke unit for a primarily geriatric population. PARTICIPANTS: A total of 313 of the 325 patients admitted consecutively between April 1998 and August 2000. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: LOS and discharge destination. RESULTS: Admission BBS scores correlated negatively with LOS (r=-.53, controlling for age). Logistic regression confirmed that the following were independent predictors of being discharged home rather than to an institution (adjusted odds ratio, 95% confidence interval): admission BBS (1.09, 1.06-1.12) and the presence of family supports (15.0, 7.2-31.3). These results generally concur with previously published results, obtained at a different stroke rehabilitation setting. CONCLUSIONS: This study validates the use of the BBS scores in assisting to estimate approximate LOS and eventual discharge destination. Age did not correlate significantly with the outcomes measured in this study, which was conducted in a geriatric population.