[062] VIDEO-BASED FUNCTIONAL PERFORMANCE ASSESSMENT AND TRAINING TOOL: A PILOT STUDY
H.F. Machiel Van der Loos, PhD; Charles G. Burgar,
MD
Rehabilitation R&D Center, VA Palo Alto Health Care
System, Palo Alto, CA 94304-1200; email:
vdl@roses.stanford.edu
Sponsor: Department of Veterans Affairs, VA
Rehabilitation Research and Development Service, Washington,
DC 20420
(Pilot Project #B2047-PA)
PURPOSE --The Video-Based Functional Performance Assessment and Training Tool Pilot Project (F-PAT) goal is to test the hypothesis that patient-specific videotape training, as compared to a generic videotape, is a superior means of reinforcing proper transfer techniques and minimizing injuries for both people who have completed the acute phase of stroke rehabilitation and their caregivers.
METHODOLOGY--The F-PAT Project has 4 phases: 1) a design effort; 2) a production effort to generate a generic tape and develop procedures to allow therapists to produce patient-specific videotapes using digital video technology; 3) videotaping of subjects; and 4) an evaluation phase with 3 groups of subjects, sent home with either the standard training materials, a generic videotape and standard materials, or a personalized tape and standard materials.
The techniques demonstrated in the generic tape follow standard clinical procedures in the VA stroke rehabilitation clinic. For the personalized videotapes, the project has established standard rules for videotaping a closed set of tasks to minimize the impact on clinician time. After videotaping the transfer tasks, the clips are digitized and added to the on-line, password-protected database as well as used to generate the personalized videotapes. At the 3-mo clinical follow-up visit, the physiatrist (blinded) and therapist ask about personal and caregiver falls or injury. This information, along with a blinded comparison of subjects performing the same transfer tasks at study intake and at follow-up, is designed to show training material effectiveness and carryover to the home environment.
PROGRESS--The F-PAT generic tape for transfers has been made. It includes preparation instructions, wheelchair to/from sitting position, and sit-to-stand segments (assisted and unassisted). The instruction is based largely on NDT-derived techniques, and is practiced by VA physical therapists at the VAPAHCS Comprehensive Rehabilitation Center. The videotape editing instructions can be learned by a person with prior computer experience with an estimated 1-2 weeks of training. A WWW-based, password-protected site has been set up to perform the evaluations, and is being refined.
FUTURE PLANS--The tape, procedures, and WWW-tools are available for clinical application. We are continuing to recruit test subjects to validate our prototype design and are seeking additional clinical partners for the next phase of development.
[063] CHARACTERIZING MEASURES OF STROKE REHABILITATION OUTCOMES
Pamela W. Duncan, PhD, PT; William Stiers, PhD;
Stephanie Studenski, MD; Robert Rondinelli, MD, PhD; Cindy
Teel, RN, PhD; Sue Min Lai, PhD; Marilyn Rymer, MD
Department of Veterans Affairs, Kansas City, MO 64128;
Center on Aging, the Departments of Rehabilitation
Psychology and Neuropsychology, Rehabilitation Medicine, and
Preventative Medicine, and the School of Nursing, University
of Kansas School of Medicine, Kansas City, KS 66160-7117;
St. Luke's Hospital, Department of Neurology, Wornall Road
at Forty Fourth, Kansas City, MO 64111 email:
pduncan@KUMC1.edu
Sponsor: Department of Veterans Affairs, VA
Rehabilitation Research and Development Service, Washington,
DC 20420
(Project F879-RA), and Glaxo-Wellcome Pharmaceuticals
PURPOSE--The major purpose of characterizing measures of stroke rehabilitation outcomes is to determine whether major outcome measures for stroke clinical interventions are sensitive to clinically meaningful change. The key research questions being investigated are:
Improved data regarding the sensitivity of existing measures to change will allow more detailed assessment of the effects of medical and rehabilitation interventions in stroke, as well as the effects of important clinical modifiers. Furthermore, better understanding of the relationships between existing measures of impairment, disability and handicap will allow better specification of questions for clinical trials and program evaluation, especially questions regarding the cost-benefit of specific interventions in relation to patient-judged quality of life.
METHODOLOGY--Patients presenting with symptoms of an acute stroke were recruited within 14 days of the event, and followed prospectively for 6 mo. For the purposes of this study, stroke has been defined as symptoms lasting more than 24 hrs of rapid onset and of presumed vascular origin reflecting a focal disturbance of cerebral function, excluding isolated impairment of higher function. The patient must be 18 years of age or older and either be able to give informed consent or have a proxy who could do so. Exclusions include patients who had significant prior functional disability (Rankin score of 2 or greater prior to stroke), patients who were lethargic, obtunded, or comatose, had a diagnosis of other significant central nervous disease, patients with NYHA grade III/IV heart failure, patients with hepatic or renal failure, had a diastolic blood pressure greater than 130 that was uncontrolled with medication, patients with a terminal illness that were not expected to live 6 mo, and patients who lived further than a 70-mile radius from one of 12 participating hospitals.
Patients enrolled in the study were stratified by stroke severity, as defined by the Orpington Prognostic Scale: minor stroke <3.2, moderate stroke 3.2 to 5.2, major stroke >5.2. All patients underwent a baseline assessment, which included demographic and medical history, blood pressure records, a Folstein Mini-Mental, and a battery of instruments to assess impairment, basic disability, advanced disability, well-being, and social support. The battery was repeated (except for the medical history and basic demographics) at 1-mo, 3-mo, and 6-mo poststroke. Additionally, caregivers were sent questionnaires at 1-3- and 6-mo to give an additional assessment of improvement or deterioration since the previous assessment.
All patient contact was by trained professional Research Associates, either Registered Nurses or Physical Therapists, who had been certified in the use of the measures.
PROGRESS--Enrollment in the study ended in March, 1998 with a total of 459 subjects. Subject testing will finish by the middle of October 1998. The completed profile of study subjects by stroke severity is 11 percent major, 50 percent moderate, and 39 percent minor stroke. The study population is 47 percent male and 53 percent female, 80 percent Caucasian, 17 percent African American, 2.2 percent Hispanic and <1 percent Asian. As of August, 1998, 79 patients (17.2 percent) were unable to complete the full 6 mo protocol due to the following reasons: expired, 30 (38 percent), refused further participation 29 (38 percent), withdrawn by family 7 (9 percent), moved out of area, 13 (16 percent).
Based on feedback provided by Stroke Study participants and their caregivers, a new Stroke Impact Scale was created to assess multidimensional recovery from stroke over time. This measure is currently undergoing reliability testing at the 3- and 6-mo follow-up visits.
RESULTS--Preliminary analysis was performed on a subset of the data from the first 184 subjects, and abstracts based on this sample were presented at several national meetings.
FUTURE PLANS--We shall clean and analyze the remaining data and write papers to address the primary research questions.
[064] DEVELOPMENT OF QUALITY OF LIFE MEASURES FOR USE IN DYSPHAGIA
Colleen A. McHorney, PhD, Jay Rosenbek, PhD; JoAnne
Robbins, PhD,
Departments of Medicine, Preventive Medicine,
Communicative Disorders, and Neurology, University of
Wisconsin-Madison School of Medicine; Wm. S. Middleton
Memorial Veterans Hospital, Madison WI 53705; email:
mnhorney@facstaff.wisc.edu
Sponsor: Department of Veterans Affairs, VA
Rehabilitation Research and Development Service, Washington,
DC 20420
(Project #C2016-RA)
PURPOSE--We seek to conceptualize, develop, and validate a patient-based quality-of-life (QOL) and quality-of-care (QOC) tool specific for persons with dysphagia for use in outcomes research, clinical trials, health services research, and quality assurance.
METHODOLOGY--The project is taking place across three phases of investigation.
In the first phase, we obtain qualitative data, using focus groups, on QOL and QOC outcomes from dysphagic patients and their caregivers, recruited in Madison WI and Chicago IL at VA hospitals and affiliated university medical centers. To do this, we developed a focus group guide, conducted the focus groups, and analyzed the data. Using those data, a large number of questionnaire items were generated and a standardized, condition-specific questionnaire (SWAL-QOL) was created to measure the health outcomes experiences of dysphagia patients.
In the second phase, we pretest the SWAL-QOL among dysphagic patients in Madison WI, Chicago IL, and Tomah WI and conduct preliminary psychometric analyses. The SWAL-QOL was revised on the basis of these analyses, both to reduce the length of the tool and to improve the quality of retained items.
In the third phase, we field the revised SWAL-QOL and conduct thorough psychometric tests. A total of 400 completed surveys will be needed because many of the psychometric tests are based on large-sample statistics. The field test is taking place across six sites: Madison, WI, Chicago, IL, Little Rock, AR, Houston, TX, Long Beach, CA, and Atlanta, GA, chosen for their active swallowing programs and diverse mix of patients. In the last 6 mo of the project, we will develop a User's Manual and submit manuscripts on the SWAL-QOL for peer review.
PROGRESS--All of Phase I and Phase II activities have been completed. Data collection and data analysis is ongoing for Phase III activities.
RESULTS--We conducted 13 focus groups (11 in Madison and 2 in Chicago) to obtain qualitative data on QOL and QOC outcomes from dysphagic patients and their caregivers (45 patients across 9 groups and 15 caregivers across 4), generating 470 pages of transcripts. These transcripts were analyzed by several scientists, and a full-day group-consensus meeting was held to delineate the major conceptual dimensions for the SWAL-QOL (based on the patient perspective as well as clinical judgment). From the transcripts and conceptual blueprint, hundreds of questionnaire items were written to represent each domain, using the patient's own words and conceptions to form question content. These questions underwent dozens of iterations of revisions to yield a pilot survey of 192 questions that was fielded in Autumn 1997, to yield 106 usable responses. Psychometric analyses (item convergent and discriminant validity, internal-consistency reliability, features of score distributions, principal components analysis) identified the most discriminating and highest quality items for inclusion in the final, 93-item version of the SWAL-QOL. This survey will undergo extensive psychometric validation, including tests of clinical validity using biomechanical criteria. We expect the SWAL-QOL to be ready for widespread dissemination in Summer 1999.
[065] PSYCHOSOCIAL IMPACT OF ASSISTIVE DEVICES
Jeffrey Jutai, PhD, CPsych; Pearl Gryfe, OT(C), Hy Day,
PhD, CPsych
Bloorview MacMillan Centre, Toronto, ON, Canada M4G 1R8;
Sunnybrook Centre for Independent Living, Toronto;
Department of Psychology, York University, Toronto; email:
ortcjj@oise.utoronto.ca
Sponsor: Ontario Rehabilitation Technology Consortium (funded by the Ontario Ministry of Health)
PURPOSE--The purpose of this research project is to develop a better understanding of how assistive devices affect the quality of life of persons with disabilities who use them. We have developed a measurement tool called the Psychosocial Impact of Assistive Devices Scale (PIADS©), an easy to use, 26-item self-rating scale. With the PIADS a device user can comment on how devices, such as wheelchairs, hearing aids, or voice-output communicators (VOCAs), affect important dimensions of quality of life that include: 1) Adaptability, reflecting attitude toward social participation and risk-taking; 2) Competence, reflecting perceived functional capability, independence, and performance; 3) Self-esteem, reflecting self-confidence, self-esteem, and emotional well being.
PROGRESS--PIADS has been shown to be a reliable and responsive measure that, because of its brevity, can be easily included with routine clinical assessments. We have recently completed studies that found that the factor structure of the scale is consistent across different populations of device users. This suggests that PIADS is measuring the same, fundamental psychosocial dimensions regardless of device or diagnosis of the user. Our research has also shown that PIADS can make fine discriminations between groups of device users on the basis of diagnosis, category of device being used (e.g., wheelchair vs. VOCA), and device options within categories (e.g., wheelchairs with power features vs. those without these features).
FUTURE PLANS--We are continuing to examine the validity of the PIADS with different groups of device users. We are trying to develop a similar measurement approach for children who use assistive devices. The PIADS responds to the needs of rehabilitation professionals for outcomes-based information. It provides quantitative data to document the real-life benefits of assistive technology for the people who use it. When combined with measures of health and functional outcomes, and service costs, PIADS scores could be helpful in doing economic evaluations of rehabilitation products and services. We have recently begun a project to investigate these possibilities.
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