Transitions in Amyotrophic Lateral Sclerosis: Patient and Caregiver Experiences.

BACKGROUND: Amyotrophic lateral sclerosis (ALS) presents many transitions for persons/people with ALS (PwALS) and their caregivers. Transitions are passages from one life phase, condition, or status to another. We used qualitative methods to understand how PwALS and caregivers experience transitions throughout their ALS journey. METHODS: PwALS and their caregivers were recruited from a multidisciplinary ALS clinic in Edmonton, Canada. We recruited patients at the stage of ALS that home mechanical ventilation, a feeding tube, and/or assistive communication technology had been offered. Semi-structured interviews were audio-recorded, transcribed, and analyzed using qualitative thematic analysis. RESULTS: We interviewed 14 PwALS and 15 caregivers and identified 5 recurring themes. The importance of community was identified by many PwALS and caregivers who expressed feelings of loneliness and isolation. Most caregivers were spouses and couples navigated a change in their relationship roles as one spouse transitioned to becoming a caregiver while the other transitioned to dependency. The caregiver spouses reported a sense of "total responsibility" that encompassed continual vigilance for the PwALS's well-being, managing their household and finances. PwALS and caregivers reported transitioning to reliance on life-sustaining medical devices; early adoption and information on these devices increased their quality of life. Participants also wanted more and earlier information on advanced care planning. PwALS and caregivers identified adapting to new forms of communication as a necessity. CONCLUSION: ALS presents many transitions for PwALS and caregivers. Understanding these transitions is important for ALS healthcare professionals who seek to implement best care practices.

Breaking bad news in amyotrophic lateral sclerosis: the need for medical education.

The manner in which physicians deliver difficult diagnoses is an area of discontent for patients with amyotrophic lateral sclerosis (ALS). The American Academy of Neurology's Practice Parameter for care of the ALS Patient recommended teaching and evaluating strategies for disclosing the diagnosis (10). Our objective was to examine residents' ability in and perceptions of communicating the diagnosis of ALS. Twenty-two resident physicians were videotaped and rated by two ALS neurologists as they delivered an ALS diagnosis to a standardized patient (SP) during an objective structured clinical examination (OSCE). Residents self-rated immediately after the OSCE, again after viewing their videotape, and completed a survey regarding the OSCE and delivering difficult diagnoses. OSCE performance was suboptimal, particularly for communication skills and empathy. The two examiners' scores correlated except for the empathy subscore. Residents' self-assessments did not align with the examiners' scores either before or after watching their videotape. The survey uncovered residents' apprehension and dissatisfaction with their training in diagnosis delivery. The results highlight a need for resident education in delivering an ALS diagnosis. The lack of correlation between residents' and examiners' scoring requires further study. Evaluation of empathy is particularly challenging. Residents agreed that OSCE participation was worthwhile.