Patient-generated data in epilepsy care decisions: a scoping review protocol

Objective: This scoping review will explore the meaning and content of patient-generated data in epilepsy care decisions. Introduction: Clinical decisions about management of long-term conditions such as epilepsy are based on multiple factors, including efficacy and safety of interventions, experiences of professionals as well as patient preferences and values. Patient-generated data integrates patient values and preferences into clinical decision-making. However, more information is needed about the meaning and content of patient-generated data when making clinical decisions in epilepsy care. Inclusion criteria: This scoping review will consider studies focusing on patient-generated data and clinical decision-making in epilepsy management. Studies will be included if they concern adult patients with epilepsy, their family members/guardians, or health professionals who treat patients with epilepsy in any health care facility or eHealth services. All studies will be included regardless of methodology. Text and opinion papers will also be considered. Study protocols will be excluded. Methods: The databases to be searched include MEDLINE, CINAHL, Scopus, PsycINFO, and Cochrane Central Register of Controlled Trials. Sources of unpublished studies and gray literature will include websites of relevant epilepsy organizations and DART-Europe E-theses Portal. The data will be extracted by two independent reviewers using a tool created for the study purpose. Along with a narrative summary, the results will be presented in tabular or graphical format in a manner that aligns with the review objective and questions. There will be no time limit on the search. Studies published in English, Finnish, Swedish, and German will be included.