Patient-reported outcome instruments for assessing the involvement of children and adolescents with type 1 diabetes in their treatment: a scoping review protocol

Abstract

OBJECTIVE: The objective of this review is to identify available patient-reported outcome instruments used to assess the involvement of children and adolescents with type 1 diabetes in their treatment. Specifically, this review will examine the content, structure, and application of these instruments. INTRODUCTION: It is considered meaningful to involve children and adolescents living with a chronic health condition, such as type 1 diabetes, in their own treatment. Despite a growing interest in patient involvement within pediatric health care, including the use of patient-reported outcomes, only a few patient-reported outcome instruments have been developed and are used to evaluate the experiences of children and adolescents with type 1 diabetes of being involved in their own treatment. INCLUSION CRITERIA: This scoping review will examine patient-reported outcome instruments used to assess the experiences of children and adolescents (11 to 18 years of age) with type 1 diabetes of being involved in their own care. Patient-reported outcome instruments measuring parents' or clinicians' experiences of involvement will be excluded. METHODS: The proposed review will follow JBI guidelines and all stages will involve 2 or more reviewers. PubMed, Embase, CINAHL, PsycINFO, JSTOR, and MedNar will be searched without limitations on the year or language of publication. Literature that is not written in English will be translated. Data extraction, charting, and analysis will be guided by a template developed for this review that focuses on the content, structure, and application of the patient-reported outcome instruments. Any modifications to the extraction template will be detailed in the review, and data will be presented in a descriptive format.