This research was supported by the National Institute for Disability and Rehabilitation Research, United States Department of Education (Grant #H133E990001) at the University of Pittsburgh, Rehabilitation Engineering Research Center (RERC) on Wheeled Mobility.
Welcome to the Functioning Everyday with a Wheelchair Homepage. This site provides information and background on the development of this self-report tool as well as instructions for the administration, scoring, and interpretation of the tool. People are welcome to download a copy of the instrument and agreement chart for clinical and research purposes. This site also provides video case-examples of the tool administration and scoring. There is no cost for downloads or viewing of the video case-examples however clinicians or other interested practitioners (such as Assistive Technology Suppliers) who wish to receive continuing education units (CEUs) or contact hours for reviewing this material are welcome to download and complete the test form and send it in with payment.
The Functioning Everyday with a Wheelchair (FEW) was designed as a self-report questionnaire to be administered over time to consumers of wheeled mobility and seating technology, as a dynamic indicator or profile of perceived user function related to wheelchair/scooter use. The tool was systematically developed by a team of clinical researchers at the University of Pittsburgh due to the lack of available outcome measures related to function with the use a wheelchair. The 10 self report task items for the FEW were developed and validated based on structured interviews with wheelchair users and analysis of goals and items documented by consumers and clinicians in other sources including additional research studies related to wheeled mobility and seating as well as the review of health records related to the prescription of these devices. The FEW has also demonstrated good test-retest reliability (Mills, Holm, Schmeler et al., 2002; Mills, Holm, Trefler et al., 2002). Two observational versions of the FEW known as the FEW-Capacity and FEW-Performance have also been developed, however, validity, reliability, and sensitivity to their ability to measure change in function are in the process of being disseminated and will be shared on this site in the near future.
The FEW can be administered in total, or selected tasks can be individually administered or combined. The FEW can be self-administered, or administered as an interview or by phone. There is no specific setting required to administer the instrument, but the most typical setting is in a clinic or research laboratory. No examiner training is required, but we recommend that the examiner have at least some background experience and/or knowledge base of seating-mobility technology and evaluation.
The first administration of the FEW should always occur face-to-face with the respondent to review the terminology and scoring system, to respond to any questions/concerns, and to ensure that s/he understands the purpose and use of the FEW. The examiner should directly ask or have seating-mobility users respond to a FEW item to gather their perceptions of how the features of their wheelchair/scooter affect function. Self-report is preferred over obtaining a direct response from a proxy reporter (e.g., caregiver, personal assistant). A proxy reporter is encouraged to share insight regarding a respondent's functional performance and seating-mobility needs/goals during the administration of the FEW, if it is the desire of the respondent and/or s/he is unable to communicate or adequately respond to an item. If a consumer is dependent in performing a task, the examiner should have the respondent or proxy reporter respond to the FEW item as follows, for example: how much do you agree that the ...features of your wheelchair/scooter allow your caregiver/assistant to help you transfer, reach and carry out tasks at different surface heights, etc., as independently, safely, and efficiently as possible? Therefore, does not apply should never be marked because it does not matter if a consumer performs the task independently or if a caregiver provides partial or total assistance, it is more important to determine if and how the features of the wheelchair/scooter allow either person to perform the task as independently, safely, and efficiently as possible.
The FEW consists of 10 consumer-generated, self-report items, which are scored using a 6 point scale of 6 = completely agree to 1 = completely disagree, and a score of 0 = does not apply. For the following responses - slightly disagree, mostly disagree, and completely disagree (indicated by an * on the data collection form) - consumers will be asked to describe the features (i.e., stability, durability, dependability, size, fit, postural support, or functional) that have contributed to their disagreement, by circling the identified features and writing a description/explanation in the Comments section. The 10 FEW items are: (1) stability, durability, and dependability; (2) comfort; (3) health needs; (4) operate wheelchair/scooter; (5) reach and carry out tasks at different surface heights; (6) transfers; (7) personal care tasks; (8) indoor mobility; (9) outdoor mobility; and (10) personal/public transportation.
The first column contains the FEW item, and is followed by seven columns in which the examiner (or consumer) marks only one box to indicate the consumer's response for that particular item. Each item also has a separate row marked Comments for the examiner (or consumer) to write information regarding the reasons/ factors contributing to the consumer's agreement or disagreement.
The FEW was designed to measure self-reported (perceived) functional performance for individuals with progressive (e.g., muscular dystrophy, amyotrophic lateral sclerosis) or non-progressive (e.g., cerebral palsy, spinal cord injury) conditions, who use a wheelchair or scooter as their primary seating and mobility device. For the purpose of this instrument, we have defined wheeled mobility and seating device as: any wheelchair (manual or power) or scooter whose features (e.g., frame dimensions, weight, maneuverability, controller, accessories) and seating components (e.g., cushion, postural supports, back, seat) promote function of its users in tasks, activities, and/or roles they want to, need to, or are required to do. The FEW has been tested with a population of (a) manual/power wheelchair and scooter users, (b) 18 years of age and older, (c) with a progressive/non-progressive condition as determined by a physician, and (d) minimal cognitive and language status as determined by the person's capacity to cognitively and linguistically respond to questions posed in the FEW instrument.
Practitioners who provide wheelchair seating-mobility interventions are faced with the need for evidence-based outcomes to determine the effectiveness of new and existing technologies and evaluation techniques, and to provide consumers a means of measuring the functional success of these interventions. Outcomes research in the field of wheelchair seating-mobility has been influenced by various models of health (e.g., Institute of Medicine, World Health Organization, client-centered), and is carried out using a range of approaches (e.g., measuring standards across patients, self-report and observation/performance-based evaluation).
In the context of a service delivery system, outcomes research is the process of establishing and measuring: (a) an anticipated outcome of service/care, (b) how an outcome was achieved, (c) the effectiveness of an outcome, (d) the impact of service/care on a recipient's outcome, and (e) maintenance or improvement of an outcome. Assistive technology outcomes research is a beneficial for (1) identifying the most effective and efficient interventions and services, (2) evaluating the performance of programs and practitioners, (3) identifying areas of needed improvement, (4) examining quality and cost-effectiveness, and (5) increasing the knowledge base and accountability of major stakeholders (e.g., consumers, practitioners, payers, and policy makers) (DeRutyer, 1997). Outcomes data provide a means for consumers to measure the effectiveness of technology in meeting their needs, assist providers in justifying their assistive technology recommendations and efficacy of their service delivery program, and allow payers and insurers to ensure that effective services were purchased.
The expected number of wheelchair/scooter users in both institutionalized and non-institutionalized settings is expected to increase to over 2.8 million (institutionalized setting = 1 million, non-institutionalized setting = 1.7 million) in the United States (Jones, 1999; Kaye, Kang, & LaPlante, 2000). Therefore, the rapid pace of technology advancement is appropriate in comparison to the vast number of individuals in need of technology solutions, and the increasing demand on providers to meet consumer needs.
Although a significant increase in assistive technology use and improvement exists, a scarcity of evidence remains on the quantitative benefit and efficacy of assistive technology devices and service delivery. Presently, the assistive technology community has a handful of instruments that measure outcomes related to key areas including user satisfaction, technology impact, and physical function, but the psychometric properties of a few of these instruments are still being tested. Practitioners have developed their own clinical rating scales (RESNA, 1998a), but often lack the time, skills, and administration support to test the reliability and validity of these scales, or participate in outcomes research as part of usual care in their practice setting. Moreover, few functional status measures that are widely available and have well-established validity and reliability are capable of accounting for the unique nature and complexities of assistive technology users and devices (DeRutyer, 1997).
A final challenge in the field of assistive technology is documenting and determining the source of technology abandonment. On average one-third of all assistive technology devices are abandoned by users (Scherer & Cushman, 2001). User dissatisfaction and wheelchair abandonment is important to study because "wheelchairs are one of the more expensive-types of assistive technology devices prescribed, so disuse is of relatively greater importance, and because successful use of a wheelchair may be more susceptible to the influence of personal and environmental factors than other mobility aids (e.g., cane)" (Donnelly & Carswell, 2002, p. 85; Kittel, Di Marco, & Stewart, 2002; Phillips & Zhao, 1993). A review of the literature by Galvin and Scherer (1996) indicated that although a person may no longer need an assistive technology device, the most significant factor associated with technology abandonment is the failure to consider user opinions and preferences in device selection. Poor feature matching (e.g., wheelchair design, size, weight, maneuverability, and portability) was a major contributing factor to wheelchairs that did not meet users' functional needs, nor enable them to fully participate in their social and community roles (Kittel et al., 2002). There are several possible consequences of assistive technology non-use, including loss of functional abilities, loss of freedom and independence, risk of injury or disease, and increased costs for consumers, caregivers, and third-party payers (Scherer, 2000).
The trend of increasing consumer needs, demands for assistive technology services, technological improvements, and lack of sufficient funding for many consumers has made it necessary for practitioners and researchers to provide evidence that seating-mobility interventions are effective. Assistive technology is frequently a lifelong need and expense (RESNA, 1998b), and without meaningful outcomes "the assistive technology community will be at greater risk of being unable to ensure delivery of its current level of goods and services" (DeRutyer, 1997, p. 96). Therefore, valid and reliable outcomes measurement tools that specifically measure consumer-generated functional outcomes of seating-mobility interventions must be available to practitioners and researchers.
Outcomes of assistive technology interventions can be measured using indirect (i.e., self-report/proxy report) or direct (i.e., performance-based observation) methods. Self-report/proxy report method of measurement may require fewer resources, but is more vulnerable to subjective bias. Performance-based observation provides a more accurate representation of how consumers perform a physical or functional task/activity as well as whether they can perform a task/activity. Objective performance measures have the potential advantage of minimizing subjective aspects associated with self-report and proxy report (DeBettignies & Mahurin, 1989) by allowing practitioners and researchers to observe function across a range of basic to complex tasks in a clinical, laboratory, or community setting. Although performance-based measurement is sensitive to change over time and useful in assessing people with cognitive disabilities, it may be limited by its (a) dependence upon consumers' motivation to perform, and (b) reflection of performance at only a single point in time if not administered more than once (Cress, Schechtman, Mulrow, Fiatarone, Gerety, & Buchner, 1995).
In order to ensure the accuracy of assistive technology prescriptions, a functional assessment is needed to evaluate the capabilities, needs, and environmental interactions of potential users. Data from functional assessments are beneficial for assisting a team of assistive technology practitioners to determine the best possible fit of the technology to an individual's needs (e.g., sitting tolerance, performance of home and community tasks), therapeutic and/or medical concerns (e.g., exercise routine, swelling, positioning), and technical and engineering constraints (e.g., durability, operation, chair dimensions).
There are four major considerations for selecting a measure for clinical use: (1) appropriateness- a measure should be designed and tested on individuals similar to the target population; (2) practicality- extent of respondent (e.g., self-report, proxy report, performance-based observation) and administrative burden (e.g., length of test, experience or training of test examiner, testing materials, and method of scoring); (3) clinical utility- ease in which a measure is administered by practitioners and researchers, and it usefulness in measuring outcomes; and (4) psychometric properties of the measure (Donnelly & Carswell, 2002; Hallin, Sullivan, & Kreuter, 2000; VanSwearingen & Brach, 2001). Special emphasis should be placed on psychometric properties (i.e., validity and reliability), because without these, the first three criteria cannot be met.
Instrument validity and reliability is invaluable in outcomes research because it affects the strength of the data, interpretation of the findings, and usefulness of the instrument. A valid instrument (a) measures what it was intended to measure, (b) determines the relevance of the scores, and (c) allows inferences to be made from the data (Guyatt, Feeny, & Patrick, 1993). Additionally, a measurement instrument must be reliable. A reliable instrument is consistent in its measurement, and unaffected by variations in testing conditions and procedures (Loewenthal, 1996). Many forms of validity and reliability exist to evaluate the utility, accuracy, and consistency of inferences derived from test results (Franzen, 2000).