OUTCOMES THAT MATTER

COSSTKCC I'IOS and validation o f practice guidelines and clinical pathways are receivlng increasing attention in all areas of health care. As practice guidelines proliferate, it is being urged that they be based on peer-reviewed, scientific evidence, not simply on the encoding of usual practice based o n expert opinion. In the field of developmental disabilities, two other critical aspects must be taken into account: the need for a conceptual franiework or classification system within which to gather and interpret research data and compare treatments, and a consensus about which outcomes should be measured. Current and new methods of treatment should be evaluated for effects o n rnultiple levels of the disabling process. 'The National Center for Medical Rehabilitation Research ( K C M R R ) has developed a framework to evaluate effects of the outcomes of niethods of treatment at multiplc levels'. This model combines aspectes of the wffo classification system of i t t i p i i r t w t i t . s , di.sciDi1itie.s and hatidicuiw2. with a niodel developed by Nagi '. The Nagi model includes a category of fuucriotilil lit,iitatioti.s i t i total body ticti\*itics which addresses an important aspect of intervention by therapists. The KChlKR classification system allows us to track both primary and secondary effects of the disability on the bodily functions of people with disabling conditions. as well as their ability to perform appropriate social roles. The first four lcvels are pertinent t o the evaluation of healthcare interventions: 1 ) pathophysiology or effects at the cellular/nmlecular level: (2) impairments or effects at the orgadorgan system level; (3 ) functional limitations or effects at the total body/body segment level; and (4) disability or effects at the level of typical role fulfillrnent at home, school, work and in community life. The fifth dimension of the KcMKK system is societal limitations. These are barriers to ful l participation in society due to attitudes. architectural barriers and social policies. Without such a system, review of the literature yields a mixture of information from a variety of specialty areas, e.g. pharmacology; orthopedics, neurology, rehabilitation medicine and education. There is little consistency in what has been measured and how i t was measured, making it difficult to assess the efficacy of, and to compare, treatments. With cerebral palsy. for example, physiologically-concerned specialists have focused on spasticity: therapeutically-concerned specialists have investigated techniques t o improve gait, speech and hand use; and developmentally-concerned specialists have been concerned with the ability to perform tasks and assistance necessary, and social interactions. Most of the outcome measurements in the literature have been made at the pathophysiological and impairnient levels, with the untested assumption that improvement at these levels will automatically translate to improvement at the functional and disability levels. An effective classification system allows us to understand the evidence we already have and t o know what additional evidence may be required to determine the efticacy of cf In P I i-. In P