How can we reduce psychological burden for patients of amyotrophic lateral sclerosis and their family caregivers? - Insights from the participatory multi-method study "potentiALS".

backgroundAmyotrophic lateral sclerosis (ALS) is a progressive, fatal motor neuron disease that severely impacts patients' physical and emotional well-being, while also imposing significant burdens on family caregivers. Despite the high psychosocial demands as part of the multidimensional burden, evidence for effective interventions remains limited. This study employed a participatory approach to assess the support needs of ALS patients and caregivers and to evaluate their preferences for psychosocial therapies to derive a therapeutic framework.

methodsIn this observational multi-method study, ALS patients, their family caregivers, and healthcare professionals (HCPs) were actively involved throughout the research process. Quantitative Data were collected through structured questionnaires assessing quality of life (e.g., MQoL, SEIQoL-Q), depression and anxiety (ADI-12, HADS), and caregiver burden (BSFC-s). Feedback was obtained through structured group sessions that combined brief introductions, practical exercises, and subsequent evaluations of four therapy approaches - cognitive behavioral therapy (CBT), psychodynamic therapy (PT), acceptance and commitment therapy (ACT), and meaning-centered therapy (MCT).

results14 patients, 17 caregivers and nine HCPs participated in the study. Among patients, ACT was the most frequently selected (37.5%), followed by CBT (31.3%), MCT (18.8%), and PT (12.5%) with similar distribution in caregiver attendance. Across all therapy approaches, both patients and caregivers rated the beneficial aspects highly (mean scores of 4.18, and 4.12, respectively, on a scale from 1 to 5) and identified relatively few limitations (mean scores of 2.18 and 2.09, respectively, on a scale from 1 to 5). HCPs corroborated these findings, noting that while the therapies were effective in offering emotional support and facilitating open dialogue, challenges such as time constraints and adapting interventions for speech limitations remain. Notably, caregivers showed a strong preference for individualized therapy, while patients favored a mix of individual and group formats.

conclusionsOur study highlights the distinct yet interconnected psychosocial needs of ALS patients and their caregivers. Tailored interventions should blend emotional support, open dialogue, and a structured therapeutic framework, while also emphasizing the need for adaptable delivery models in clinical practice. These findings support the development of scalable, patient-centered psychosocial support approaches as part of the multidimensional care in ALS.

trial registrationThe trial is registered at ClinicalTrials.gov (number: NCT06441448, registration date: May 28, 2024).