Communication of diagnostic and prognostic information in amyotrophic lateral sclerosis: a scoping review of patient, informal carer, and healthcare professional perspectives

Introduction: This scoping review is part of a research project aimed at enhancing support for individuals with MND in making informed decisions regarding their care, considering their unique circumstances and preferences. A key objective of this research project is to develop effective ways for healthcare professionals to convey predictive information about patient care trajectories. To achieve this, it is important to explore the existing body of literature in relation to the various approaches and strategies employed for communicating care information to patients. Objective: To review and synthesise existing evidence on key characteristics related to clinician-patient communication such as, information needs, expectations, preferences, and communication facilitators and barriers, in the context of diagnosis and prognosis in motor neuron disease (MND) from the perspectives of patients, their informal carers, and healthcare professionals. Methods: We will search for original text articles in the following English language databases from inception, using a combination of keywords related to communication of information around diagnosis and prognosis in MND: MEDLINE (via Ovid), SCOPUS, PsychInfo (via Ovid), Web of Science, and CINAHL (via EBSCO). Inclusion criteria: The scoping review will include adult patients aged 18 and over with MND, their informal carers, and healthcare professionals who care for them, without restrictions on ethnicity, race, socioeconomic status, or location. Studies will focus on the communication of prognostic and diagnostic information for MND. Only studies published in English in peer-reviewed journals with full-text available will be included. Exclusions include studies examining curable or non-life-limiting diseases, conference abstracts, opinion pieces and reviews.