RESUMO
BACKGROUND: Information needs are one of the most common unmet supportive care needs of those living with cancer. Little is known about how existing tools for assessing information needs in the cancer context have been created or the role those with lived cancer experience played in their development. OBJECTIVES: This review aimed to characterize the development and intended use of existing cancer specific information needs assessment tools. METHODS: A systematic scoping review was conducted using a peer-reviewed protocol informed by recommendations from the Joanna Briggs Institute and the Prefered Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist. RESULTS: Twenty-one information needs assessment tools were included. Most tools were either breast cancer (n = 8) or primary tumor nonspecific (n = 8). Patients and informal carers participated in initial identification of questionnaire items in the minority of cases (n = 6) and were more commonly involved in reviewing the final questionnaire before use or formal psychometric testing (n = 9). Most questionnaires were not assessed for validity or reliability using rigorous quantitative psychometric testing. SIGNIFICANCE OF RESULTS: Existing tools are generally not designed to provide a rigorous assessment of informational needs related to a specific cancer challenge and are limited in how they have been informed by those with lived cancer experience. Tools are needed that both rigirously address information needs for specific cancer challenges and that have been developed in partnership with those who have experienced cancer. Future directions should include understanding barriers and facilitators to developing such tools.
RESUMO
BACKGROUND: Information needs are one of the most prevalent unmet supportive care needs of those living with cancer, including patients and their informal caregivers. Understanding how existing questionnaires for evaluating information needs have been developed is important for guiding appropriate use and informing future research. A literature review examining how information needs assessment questionnaires for use in the cancer context have been developed, with a specific focus on how questionnaire items have been identified, does not exist. OBJECTIVE: This scoping review will examine how questionnaires for assessing the information needs of those living with cancer have been developed with special focus on how patients, informal caregivers, and health care professionals have been involved in the selection and identification of questionnaire items. METHODS: This review will include published studies describing the development and validation of information needs assessment questionnaires for use in the oncology context. MEDLINE (Ovid), Embase (Ovid), CINAHL, Scopus, Web of Science, the Cochrane Database of Systematic Reviews, and PsycInfo will be searched. Articles published at any point up to the date of the search will be eligible for inclusion. One person will screen titles and abstracts, and 2 people will screen and extract data from full-text articles. RESULTS: Results are expected to be available in early 2023. Summary tables and a narrative summary will be used to describe results. CONCLUSIONS: This scoping review will assist in identifying appropriate information needs assessment tools to incorporate into clinical and research contexts in oncology. It will also identify if additional information needs assessment tools are needed. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/35639.