Background Despite the focus on patient experience in recent Department of Health policies and the fact that every year 7%– 10% of children are admitted to hospital and/or attend hospital outpatient clinics, children and young people (CYP) are rarely surveyed about their experience of care. Of those surveys that do exist about CYP’s experiences, most have been developed by adults and/or are completed by adults, with little direct input from CYP themselves. Our aim, therefore, was to develop patient reported experience measures (PREMs) with CYP for CYP.
Methods The PREMs were developed over a number of stages, each of which involved extensive patient engagement to ensure that the CYP PREMs reflected those elements of their hospital experience that were most important to CYP. Elements of the PREMs development included focus groups to determine the aspects of care which are the key drivers of patient experience, cognitive testing to ensure that CYP understood the questions as intended, the language is appropriate and the response options are comprehensive, and focus groups to determine the most appropriate mode through which to administer the CYP PREMs and to gain an understanding of patients’ design preferences.
Results Inpatient and outpatient PREMs were developed for three age groups – 8–11 years, 12–13 years and 14–16 years. Three clear themes were evident from the initial focus groups and provided the structure to the questionnaires – hospital facilities, hospital staff and treatment and tests. During cognitive testing questions were generally understood but needed some clarification, and questionnaires were identified as being too long. Some questions were therefore removed or reworded, questionnaire navigation was improved and response scales amended. During the subsequent focus groups CYP indicated that they preferred tick-box questions with a non-standard layout and that the design should not be themed around hospital. Paper rather than an electronic format was preferred by many but depended on personal experience. Two questionnaire designs were selected. In total 229 CYP participated in the PREMs development.
Conclusion CYP wanted to engage in the development of the CYP PREMs and clearly expressed a wish to be able to report meaningfully on their hospital experience.
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