Abstract

Background: In order to assess the full impact of any long-term care (LTC) interventions, instruments are needed that measure quality of life of those using the services. The Adult Social Care Outcomes Toolkit for service users (ASCOT) measures quality of life of older persons using LTC services and is available in several languages. As the tool is based on self-assessment, the quality of the collected data hinges on the respondents' ability to provide accurate answers.

Objectives: In order to widen its scope of use to persons who may have difficulties understanding the original German ASCOT, we have developed an easy-read (ER) version of the German ASCOT for LTC service users. This paper outlines this development. We describe the process of adapting, testing and amending the tool.

Methods: We developed a first version of the ASCOT SCT4 questionnaire for LTC service users based on ER guidelines and previous research on ASCOT-ER in England and Australia. For this purpose, we developed an ER adaptation spreadsheet that allowed for a systematic identification and revision of sections in need of amendment. We then completed several rounds of pre-testing with the adapted questionnaire, interviewing 28 LTC service users in total (including care home residents, users of home care services and visitors of day care centers). We used cognitive interviews to assess whether the questionnaire was understood as intended and how the illustrations were perceived. In addition, we used eye-tracking technology to gain further insight into how the respondents navigated through the questionnaire. Building on the results of both data collection methods, we adapted the wording, formatting, instructions and illustrations of the questionnaire.

Results: In order to make the instrument consistent with ER guidelines, changes in several areas were needed. These included the grammatical structure (mainly sentence length), wording (avoiding or breaking up difficult words) and formatting (clear and repetitive page layout). In terms of illustrations, we found a strong preference for simple, unencumbered illustrations depicting unambiguous, positive situations.

Conclusion: ER is an inclusive approach aimed at presenting written texts in a straightforward, easily accessible way, thus facilitating access to information. The adapted ASCOT survey instrument in German may be used with persons who are less familiar with using questionnaires, have difficulties reading or processing information, or have mild intellectual disabilities. ER instruments enable research to use self-assessment instead of proxy responses, thus giving vulnerable people their say in an area as significant and subjective as of quality of life.