Scoping review protocol: Amyotrophic lateral sclerosis and its impact on the individual, family, and partner

Amyotrophic lateral sclerosis (ALS) is a rapidly progressive neurodegenerative disease that can profoundly disrupt the daily lives of those affected and their families, with significant repercussions on family functioning, the health of carers and, in particular, the couple who take on the main caregiving role (Wijesekera & Nigel Leigh, 2009). Despite growing evidence of the burden of care, there is still a lack of studies that comprehensively analyse the impact on the three main areas: patient, family and carer, which justifies the need for a specific review of the literature. The aim of this exploratory review is to map the scope and nature of scientific output and published grey literature related to the impact of ALS on the quality of life of the patient, the family unit, and the couple who assume the care. Using the PCC criteria (Population: people with ALS, families and partners; Concept: emotional, psychological, social or economic impact; Context: any setting), the following question was formulated: What is the existing evidence on the impact of amyotrophic lateral sclerosis (ALS) on the quality of life of the individual, the family and the partner? This scoping review will follow the methodological framework of Arksey and O'Malley (Arksey & O'Malley, 2005), updated by Levac et al. (2010) and the recommendations of the Joanna Briggs Institute (JBI), with reporting in accordance with the PRISMA-ScR extension (Peters et al., 2020). The research will be conducted in the following databases: PsycINFO, CINAHL, PubMed and Embase, as well as in grey literature and Epistemonikos (Goossen et al., 2020), in addition to a manual search of the reference lists of relevant articles. Publications evaluating the impact of ALS on individuals, families, or couples will be included, in any major language, without geographical or temporal restrictions. Publications without explicit mention of the target topics, focusing on genetic studies, animal studies, opinion pieces, or editorials will be excluded. Data will be extracted independently by two reviewers using a standardised record (authors, year, country, design, population, objectives, key findings, category, key concepts in the text, biases and limitations) with a coding manual for consistency. Any disagreement between reviewers will be resolved through discussion until consensus is reached. A third reviewer will be available to assist in cases of disagreement. The data included will be presented in a narrative synthesis and will integrate the mapped results, describing the relationship between the results, the objectives, and the research question. No formal quality assessment will be performed, in line with the exploratory purpose of mapping evidence. Ethical approval is not required, as no human participants are involved. There will be no direct involvement of patients or the public. This exploratory review is expected to contribute to the work of researchers by identifying what is known, what is agreed upon, what is debated, and what remains to be studied regarding the impact of ALS on the quality of life of patients, their families, and their caregiving partners. The results could support clinical practice with these patients and their families, as well as the planning of interventions that address their real needs.