(Philadelphia, PA) -- Imagine losing the ability to speak, walk, move, or clearly comprehend what's going on around you. Which skill would you want to recover most? For more than 50 million individuals with disabilities in the U.S. today and the rehabilitation clinicians that care for them, the varying importance placed on functional skills is critical to making treatment choices.
To help close the gap between the differences in what patients with disabilities and clinicians value, researchers at the University of Pennsylvania Health System have developed the Features-Resource Trade-Off Game (Features Game) of Functional Recovery in conjunction with several national colleagues. A study of the model appears in the December issue of the Archives of Physical Medicine and Rehabilitation.
The Features Game adopts established economic and mathematical theories of utility, and works by allowing both clinicians and patients to rank functional skills by personal importance. Building from the fundamental principle of empowerment, the game is designed to enhance the rights of individuals with disabilities to pursue their highest priorities, make decisions, and have increased treatment choices.
"Understanding the differences between what clinicians and patients perceive as valuable will help to achieve the optimal outcome -- one that considers the patient's needs and capabilities," explains Margaret G. Stineman, MD, lead author of the study and associate professor of Rehabilitation Medicine at Penn. "As the patterns of preferred recovery are chosen, a strategy for treatment can be tailored to meet patients' goals."
The Features Game compares preferences for recovery that foster independent living among 18 functional status items that make up the Functional Independence Measure used in rehabilitative care. These status items (the "featured items") include both motor skills (eating, grooming, bathing, dressing, bladder management, walking/wheelchair mobility) and cognitive skills (comprehension, expression, social interaction, problem solving, memory). The game's 18 functions are rated in seven levels ranging from complete dependence on assistance to total independence. The game also involves trading levels of independence across the different featured items to better identify which status goals were most valued. It is designed to be a generic process that can be played with any alternative features. Those features can express health states, or they can be applied to product attributes as long as they are rated in ordered levels.
The Features Game was played by four panels of five participants from Philadelphia and Houston that were separated into clinician and patient groups. The panelists included 10 individuals with severe disabilities and 10 rehabilitation clinicians. Study participants identified which tasks were most important at different stages of recovery based on independent living. Beginning at stage one (total dependence on the caregiver for all 18 status items), panelists wereasked to imagine that they were unable to eat, groom, dress, control their bladder, or perform any of the other 18 functions, and proceed by selecting which task he or she would want to begin to recover first. The game then involved a continuous two-step process of building imagined recovery patterns until all six stages were completed, from dependence to total independence. In addition, panelists were given the option of moving one move forward at the expense of one move back for certain preferred functions.
After final calculations were made, the findings concluded that both consumers and clinicians valued cognitive and communication skills more than physical skills in the earliest stages of recovery. Bowel and bladder control were also highly valued by all panels. By stage three of recovery, however, there were clearly differences between clinician and patient preferences: rehabilitation specialists continued to give the most priority to full independence in communication and cognitive skills while individuals with disabilities accepted some minor deficits in these areas in trade for earlier gains in a few of the physical skills such as dressing, grooming, and better bladder management. The disparity among these preferences was greatest in stage four of recovery where there was a 100 percent (100%) difference between the mathematically defined scores that clinicians and patients gave to featured items.
Functional skills differ in importance depending on who is judging them. The Features Game can help decrease the distinguished split that exists between which skills people with disabilities value and which skills clinicians feel are important; helping clinicians really understand who they are caring for and what their needs are. "It is extremely critical that clinicians develop ways to focus on patients," said Dr. Stineman. "What they value, want, and need must be taken into account in order to develop the best treatment plan for recovery."
Editor's note: Contact Public Affairs to reach Dr. Stineman before January 1, 1999. After this date, she can be reached directly by calling 215-898-6272.
Journal
Archives of Physical Medicine and Rehabilitation