Perspectives on Outcome: What Disability Insiders and Outsiders Each Bring to the Assessment Table

Abstract 

Brown M. Perspectives on outcome: what disability insiders and outsiders each bring to the assessment table.

In selecting which effects of an intervention are assessed and defined as outcomes, the researcher draws on his or her perspective, which, because it differs from that of the insider (ie, the person with a disability/the treatment recipient), will lead to selection of 1 or more outcome variables that are possibly at variance with or irrelevant to the insider's values/goals. This is not to say that one perspective on outcomes is better than another and is to be preferred, but instead that the perspectives are likely to complement each other. Acknowledging and respecting the insider's perspective on outcome can be accomplished by including in the measurement plan both the outcome variables of interest to the researcher and measures that are shaped to tap into the insider's values. General principles for incorporating the insider's perspective into assessment of outcomes are discussed, with a focus on shaping subjective measures to incorporate fully what is salient and important to the disability insider, as well as adopting metrics that are compatible with the insider's values. Also included is a description of a specific tool (Participation Objective, Participation Subjective) for assessing participation that draws on both the insider's and the outsider's views.

Key Words: Controlled clinical trial [publication type], Disabled persons, Outcome assessment (health care), Quality of life, Randomized controlled trial [publication type], Rehabilitation

List of Abbreviations: HRQOL, health-related quality of life, ICF, International Classification of Functioning, Disability and Health, PAR, participatory action research, POPS, Participation Objective, Participation Subjective