Operationalizing quality of life for people with profound multiple disabilities:a Delphi study

Background: In a recent study, we constructed an item pool that contains items on the quality of life (QOL) and related aspects of support of people with profound multiple disabilities (PMD). In the present study, a panel of experts assessed the content and the structure of this item pool in order to enhance its validity and usefulness. Method: A two-round Delphi study was set up. The panel consisted of 45 experts, of whom 12 were theory-experts, 12 practice-experts and 12 experience-experts from Belgium (n = 12), Germany (n = 12), the Netherlands (n = 11) and the UK/Ireland (n = 10). Both quantitative and qualitative methods of analysis were applied to the data. Results: The majority of the items were considered relevant for the QOL of people with PMD. In the first round, 91% of the items reached the 80% criterion of consensus. In the second round, 78.7% of the items reached the 85% criterion of consensus. There were no significant differences in opinion neither between types of experts nor between countries. Several items were reported as missing in the item pool and were added. Conclusion: The results provide some evidence that the item pool is a valid operationalization of QOL of people with PMD and can be used in an instrument to measure the QOL of this target group