Abstract
BACKGROUND: Advances in research and modes of information delivery provide new opportunities to access medical information. Despite this, patient information needs on head and neck cancer (HNC) treatment are not sufficiently met. OBJECTIVE: The aim is to investigate (1) information content required for patients with HNC and their caregivers to support confident decisions about their treatment, (2) information needs by role (eg, patient and caregiver), and (3) the preferred format or mode of information delivery. Results will be used to inform the development and testing of a decision aid for this patient population. METHODS: A scoping review was conducted using the Arksey and O'Malley and Levac et al frameworks. The search was carried out in CINAHL, MEDLINE, Embase, and Cochrane Central Register of Controlled Trials and limited to the English language between 2012 and the search date of September 20, 2022. Studies were dual-screened against inclusion and exclusion criteria, central to which was a focus on information needs within the context of decision-making. Data were extracted from the articles using prespecified criteria into a data extraction sheet that was pilot-tested and refined prior to its application. Reporting followed the research questions and was guided by PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews). RESULTS: A total of 10,495 publications were identified, with 30 articles suitable for data extraction. High information needs included details of the diagnosis (3/30, 10%), purpose (6/30, 20%), and risks (10/30, 33%) of medical procedures; strategies for eating and speaking during and after treatment (6/30, 20%); lifestyle guidelines for survivorship (4/30, 13%); and facts about the human papillomavirus (2/30, 7%). Moderate information needs included the physical (10/30, 33%) and psychological (17/30, 57%) domains of posttreatment, treatment options (6/30, 20%), strategies to improve communication with health care providers (8/30, 27%), and nutrition (8/30, 27%). Information needs of patients with HNC and their caregivers evolved through the phases of treatment, highlighting the need for relevant information to support collaborative decision-making with their health care providers. Caregiver needs were underrepresented (5/30, 17%), but more information on stress reduction strategies for the patient, how to play a role in treatment decisions, and where to obtain the best medical care for the patient was identified. The preferred mode of delivery for information varied and reflected the age, gender, and country of the sample populations. CONCLUSIONS: Information needs of patients with HNC and their caregivers are not being met to a satisfactory level, evidenced by the breadth of outstanding needs. Health care providers must consider evolving patient and caregiver information needs, addressing concerns on an individual basis to support shared decision-making. Tools are needed to support information delivery that is acceptable to patients and caregivers.