Facing inevitable decline: a systematic review and thematic synthesis of progression-related fears in amyotrophic lateral sclerosis

Abstract

Abstract Background Amyotrophic lateral sclerosis (ALS) is characterised by inevitable and continuous deterioration, yet the psychological experience of anticipating future decline has not been systematically synthesised. Although qualitative studies have described loss, uncertainty, and adaptation in ALS, how these experiences reflect progression-related fears and their implications for palliative care remain unclear. Methods Eight electronic databases were searched from inception to 20 May 2026. Qualitative and mixed-methods studies reporting progression-related fears among people with ALS were eligible. Two reviewers independently screened records. Included studies were appraised using the Critical Appraisal Skills Programme Qualitative Studies Checklist and integrated using thematic synthesis. Results Seventeen studies involving 285 people with ALS were included. Three themes comprising nine subthemes were identified. Future-oriented fears of inevitable loss in ALS progression captured fears of functional decline, loss of control, dependence, becoming a burden, and uncertainty about dying. Present disruptions to self, relationships and personhood reflected embodied changes, altered roles, relational burden, and threats to dignity and self-worth. Preserving agency while preparing for further decline described patients’ efforts to maintain control through adaptation, family and healthcare support, and meaning reconstruction. Conclusion Progression-related fears in ALS extend beyond anticipated deterioration and are embedded in changing experiences of self, relationships and everyday life. Recognising progression-related fears may help multidisciplinary teams identify concerns that are not fully captured by conventional symptom assessment, particularly during transitions involving loss of communication, increasing dependence, and end-of-life decision-making.