Operationalisation of quality of life for adults with severe disabilities.

Twelve experts spent four rounds rating possible quality-of-life items for adults with severe intellectual disability. They kept items only when 80 % or more of the panel agreed the item mattered and could be observed.

The final bank holds 118 items split into eight domains such as physical comfort, social belonging, and choice. Each item is written so staff or family can score it from direct observation—no self-report needed.

The Delphi process cut an initial long list down to a tight set that experts say covers real QOL for adults who cannot speak or fill out surveys. All 118 items survived strict agreement rules, giving future users a ready-made pool to build from.

The eight domains line up with everyday areas you already track—eating, pain, friendships, safety, respect—so the tool feels familiar in practice.

Rojahn et al. (2012) shortened the Behavior Problems Inventory from 49 to 30 items while keeping it valid. Austin et al. (2015) use the same careful item-trimming idea, but for QOL instead of behavior, showing the method works across domains.

Tsakanikos et al. (2011) built the Disability Assessment Schedule for behavior in adults with ID. Both papers start with expert input and end with observable items, proving the Delphi-plus-observation path is a trusted route.

Freeman et al. (2015) compared two mental-health screens and found they mostly agree except on obsessive-compulsive signs. That mismatch reminds us that even well-built tools can disagree on narrow traits—so when you pick QOL items from the new 118-item bank, pilot them first to catch similar quirks.

If you serve adults who use wheelchairs, gestures, or eye gaze, you now have a vetted menu of QOL items you can drop into your intake or progress-review forms. Start with one domain—say, physical comfort—score five items for a month, then add the next domain. You will gather outcome data that funders and families can read and trust.