The development of the QUALITRA-ID: a user-orientated interview to assess the quality of care and service trajectories for intellectually disabled persons

Background Care and service trajectories for people with intellectual disabilities (ID) are routes within the healthcare delivery system that consist of all the steps that people with ID and their families have to take in order to realise the needed care and services. In contrast to the growing system-orientated knowledge concerning quality of care delivered through collaborative relationships between care providers, specific user-orientated knowledge regarding the quality of care and service trajectories is largely lacking. Aim This article aims to describe the development of the QUALITRA-ID; a user-orientated interview concerning the quality of care and service trajectories for people with ID. Methods First, the phenomenon 'care and service trajectories' is conceptualised on the basis of document analysis and semi-structured interviews with key informants in the field of health care for people with ID. Second, the quality of care and service trajectories is operationalised by means of eight focus group discussions with intellectually disabled persons and their parents/relatives and a review of the literature. Third, the QUALITRA-ID is constructed using the results of the conceptualisation and operationalisation of the phenomenon. Fourth, the QUALITRA-ID is refined in two stages that were concerned with examining the feasibility, understandability and completeness of the QUALITRA-ID. The second stage was also concerned with the first quality assessment among people with ID. Results The final result is a 24-item QUALITRA-ID consisting of a personal conversation and a closed-ended part.