Assistive Technology for Mobility (ATM)
Introduction
Technology for mobility may be the single largest factor in determining an individual’s ability to participate, both at the level of employment and community living. The New Freedom Initiative, announced by President Bush on February 1, 2001, specifically mentions the need to increase access to AT. As stated in the NIDRR Long Range Plan, AT is used to “to assist them [people with disabilities] to participate in and function more independently in the home, at work, in recreational settings, and at cultural and religious events.”1
Despite the importance of ATM, there were no technology variables in the NSCID at the start of the last funding cycle in 2000. UPMC-SCI led an effort to pilot a new set of technology variables during the past cycle. Thirteen centers volunteered to be part of the pilot testing and, as a result of the pilot testing and an acknowledgement by the other centers of the importance of AT, the variables were adopted into the NSCID. However, with the new modular design, these variables were dropped at the last model system directors meeting (12/05) with the full knowledge that they were likely to be proposed as a module.
Even with the limited data collected, UPMC-SCI was able to publish a paper from the pilot technology work. The data collected indicated that, within the model systems, disparities existed in the number of wheelchairs and their quality (as determined by cost and features provided).2 Individuals from minority backgrounds and with lower socioeconomic status were more like to have poor quality chairs and not to have back-up chairs. In addition, in a recent analysis of the data collected during the pilot effort, (see appendix B.3), we found that more than 45% of the chairs used by model systems’ participants required repairs in the 6 months prior to data collection, and an amazing 7% of these individuals were stranded because of failures, 23 participants were injured as a result of wheelchair failure, and a number missed work or medical appointments. These issues clearly require further investigation.
Despite the acknowledged importance of AT, coverage for mobility is under attack. Recent fraud has led to policies that may not reflect what is considered to be best practice. The impact of changes in coverage are likely to be profound, but can only be measured if they are tracked. In addition, without good data related to the importance and use of AT for mobility, clinicians will not have the ammunition needed to advocate for best care.
With this backdrop, UPMC-SCI proposes an Assistive Technology for Mobility (ATM) Module. The ATM module will be both broad yet targeted toward testing hypotheses and collecting the data needed to understand the impact of coverage changes and to fully explore the issue of disparity in ATM prescription. In addition, the module will use a data logger (DL), developed and tested at our center, specifically for wheelchairs. DLs can precisely measure the velocity, time of day, and distance traveled of power and manual wheelchairs over long periods of time. The specific aims and hypotheses of the ATM module are:
1) To investigate the impact of policy changes on customizability and features of wheelchairs and the number of working wheelchairs an individual owns. A secondary goals is to gain a broader picture of AT used, beyond that of the wheelchair.
a. As compared to a historical control, individuals with SCI will have less functioning backup wheelchairs and will receive wheelchairs that are less customizable, and have few features such as tilt-in-space, seat elevation, and recline.
2) To assess differences in the quality of wheelchair provided and the availability and functionality of backup wheelchairs for historically vulnerable patient groups, controlling for potential socioeconomic status (SES) and comorbidity confounders.
a. Compared to white individuals and controlling for income, geographic location, occupational status, insurance status, physical and mental comorbidities, and level of spinal cord injury, African-American and other minority individuals will
i. Receive wheelchairs that are less customizable and have fewer features.
ii. Have fewer functioning back-up wheelchairs.
b. Compared to males and controlling for income, geographic location, occupational status, insurance status, physical and mental comorbidities, and level of spinal cord injury, females will
i. Receive wheelchairs that are less customizable and have fewer features.
ii. Have fewer functioning backup wheelchairs.
3) To examine patient and provider factors independently associated with study outcomes.
a. Customizability and features of wheelchairs provided and the functionality of backup wheelchairs will be associated with:
i. Patient income, geographic location, occupational status, insurance status, physical and mental comorbidities, and level of spinal cord injury.
ii. Patient health literacy and perceptions regarding communication with their doctor.
iii. Provider race/ethnicity, age, specialty, and year of graduation from medical school.
4) To investigate distance traveled, time spent active, and speed traveled in a power and/or manual wheelchair and its relationship to:
a. Wheelchair provided
i. Wheelchair customizability and features will positively correlate with the distance traveled, time spent active, and speed traveled.
b. Wheelchair breakdown
i. When controlling for subject and wheelchair factors, the distance traveled, time spent active, and speed traveled will positively correlate with frequency of breakdown.
c. Measures of participation quality of life
i. When controlling for subject and wheelchair factors, the distance traveled, time spent active, and speed traveled will positively correlate with participation as measured by the CHART.
d. Wheelchair skill
i. When controlling for subject and wheelchair factors, manual wheelchair skills as measured by the Wheelchair Skills Test will positively correlate with the distance traveled, time spent active, and speed traveled.
Background
Importance of Assistive Technology for Mobility
ATM is an integral part of the lives of individuals with SCI. ATM can literally take an individual who is completely dependent on others and make him/her independent. Numerous studies have concluded that reintegration into society depends much on access to appropriate and adequate ATM, such as wheelchairs.1,3-5 As an example, a recent study from the model systems national data center found that “mobility and perceived health appear to be the consistent predictors of life satisfaction at year 2 post-SCI”.6 Using a participation measure developed by Gray et al.7, our study found that individuals with SCI perceived wheelchairs as being the most significant factor limiting participation – even greater than their impairment.8 In other words, lower limb paralysis did not keep them from going up a curb, their wheelchair did. At some point after their injury, individuals with SCI no longer see their impairment as the main cause of limitations. The individuals instead see inadequate technology as the factor preventing them from doing more. This is likely a healthy adaptation to injury. Other studies have found significant complaints related to wheelchair technology among individuals with SCI.9
Wheelchair Quality and Customizability
In the hypotheses above, we used the terms customizability and features to describe differences in wheelchairs. Our work has found that customizability often tracks with quality. For example, depot-style wheelchairs, which generally weigh over 40 lbs and have no adjustability, have been found to fail much sooner in standardized testing than more customizable lighter manual wheelchairs.10,11 UPMC-SCI has published work arguing that manual wheelchair users should only use customizable, very lightweight wheelchairs because of the risk for upper-limb injuries.12-14 Other studies also found customizable manual wheelchairs to be more durable,12 cost-effective over the life of the chair,10 and comfortable for the users.15 Power wheelchair users are also at risk of having similar deleterious conditions such as upper-limb16 and neck pain.17 Individuals with tetraplegia have been found to rapidly develop scoliosis and kyphosis,18 leading the authors to recommend customizable seating for this group.
Durability of power wheelchairs also varies considerably.19,20 The majority of the studies related to durability have been based on standards testing, in which chairs are subjected to repeated stresses over a short period of time to give an indication of how they will perform under normal use. However, data is desperately needed on breakdowns that occur in the community and the factors associated with these breakdowns. Failures in wheeled mobility devices have been shown to lead to injuries and death.21,22 The data collected by the model systems in 2005 found a significant prevalence of breakdowns which resulted in both injuries and the individual being stranded. Improved and alternative design and customizable wheelchairs can provide reasonable preventive measures against deleterious conditions while improving quality of life.3,23,24 However, without additional data we will not be able to effectively push for change.
Disparity in Healthcare Delivery
Health disparities are observed, clinically and statistically significant differences in health or health care delivery between socially distinct vulnerable and less vulnerable populations. Our research posits that individual patient factors (e.g., culture, socioeconomic status, biology), provider factors (e.g., attitudes, practice patterns, cultural competence), and health care system/policy factors (e.g., organization, insurance coverage, availability of expertise and distribution of resources) interact to affect health-care-delivery disparities and consequently health outcome disparities.25 The model also provides a framework for advancing knowledge about disparities across three stages: (1) detecting unrecognized differences in health and health-care delivery; (2) identifying and understanding the determinants underlying identified disparities (i.e., mechanisms and mediators); and (3) designing and evaluating interventions to promote equity in health and health care among vulnerable populations.
Vulnerable populations are defined as groups that have faced discrimination because of underlying differences in social status, which can lead to potential gaps in health or health care. This broad definition is consistent with definitions proposed by the NIH and the VA.26 In addition to race/ethnicity, these definitions include other characteristics, such as membership in traditionally underserved groups (e.g., women and rural populations within the VHA or inhabitants of Appalachia under the NIH definition), permanent disability, and those whose living conditions pose special challenges to health-care delivery (e.g., patients with multiple comorbidities, institutionalized and/or homebound patients).
While it is clear that wheelchairs vary in both customizability and quality, it is also clear that there are potential socioeconomic barriers that prevent individuals from obtaining more appropriate and customizable wheelchairs. In its 1993 landmark study, the National Council on Disability concluded “There are significant groups of individuals with disabilities who remain unserved or underserved by existing public and private programs that have financing available for assistive technology.”1
These findings are supported by subsequent studies that found extrinsic factors such as racism, prejudice, equity of resources, and professional bias27 as well as intrinsic barriers, such as different cultural view and lack of knowledge of assistive technology28 can negatively impact the ability to obtain appropriate technology, such as wheelchairs. Our pilot research identified a number of sociodemographic factors that were related to receipt of lower quality wheelchairs, including minority status, less education, public sector insurance, and annual combined family income below poverty level (<$10,000).2
Further investigation of the relationship between these and other vulnerable populations and quality of wheelchair is needed. Patient-level factors such as race/ethnicity, age, and sex provide the foundation for such evaluation but additional data on income, educational level, and geographic location are critical for accurately detecting disparities in wheelchair quality among vulnerable groups. Once these disparities are detected, understanding the reasons for these disparities is crucial. Patient-level factors to be examined include insurance status, employment status, number of comorbid conditions, and health literacy. Provider-level factors include age, race/ethnicity, specialty, and year of medical school graduation.
Policy and Wheelchairs
To receive coverage for durable medical equipment (DME), CMS requires that the person need the DME in order to function in their home.29 This standard can lead to wheelchairs being designed to function in a home environment, when in fact they are heavily used outside of the home. Recently, CMS and the HHS Inspector General have raised concerns about fraud in the form of DME overuse which has lead to new policies30 which are perceived as restrictive by many.31 In December 2005, CMS also announced it would review its criteria for Medicare wheelchair coverage. While CMS’s final decisions are not yet known, these steps may provide a preview of forthcoming policy changes. It is critical to track the impact of these changes.
Wheelchair Use
Few studies have investigated driving characteristics of wheelchair users in community settings.32;33,34 In two separate studies involving over 50 individuals with SCI who used both power and manual wheelchairs, we found that wheelchair users travel further while at the National Veterans Wheelchair Games (over 3500 meters/day) than in their home environment (over 2000 meters/day).32,33 From the data collected using the DL, we can also get activity, including number of minutes moving, distance traveled, and speed. We found that, in their home setting, individuals were active (moving) 44.41 minutes per day. In a study of children, we found similar usage among manual and power wheelchair users, but males were found to travel further and at a faster speed than the females.35
Other studies looking at distance traveled have used odometers. Janssen et al.36 found that the average distance traveled by manual wheelchair users was 628.9 meters per day. Sawazky et al.37 used odometers to monitor the activity of thirteen children with spina bifida who use a manual wheelchair to determine the effectiveness of a web-based activity program. The children were found to travel an average of 476 kilometers over a four-month period (i.e., ~4 km/day). While these studies tell us about distance travel, how this metrics relate to participation, type of wheelchair an incidents of wheelchair breakdowns is unknown and requires a large sample size as can be found in the model systems.
References
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