TY  - JOUR
AU  - Heyne, Svenja
AU  - Kuzmanova, Adelina
AU  - Esser, Peter
AU  - Linse, Katharina
AU  - Günther, René
AU  - Mehnert-Theuerkauf, Anja
AU  - Metelmann, Moritz
TI  - How can we reduce psychological burden for patients of amyotrophic lateral sclerosis and their family caregivers? - Insights from the participatory multi-method study 'potentiALS'.
JO  - BMC neurology
VL  - 25
IS  - 1
SN  - 1471-2377
CY  - London
PB  - BioMed Central
M1  - DZNE-2025-01158
SP  - 414
PY  - 2025
AB  - Amyotrophic 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.In 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).14 patients, 17 caregivers and nine HCPs participated in the study. Among patients, ACT was the most frequently selected (37.5
KW  - Humans
KW  - Amyotrophic Lateral Sclerosis: psychology
KW  - Amyotrophic Lateral Sclerosis: therapy
KW  - Male
KW  - Caregivers: psychology
KW  - Female
KW  - Middle Aged
KW  - Aged
KW  - Quality of Life: psychology
KW  - Adult
KW  - Cost of Illness
KW  - Surveys and Questionnaires
KW  - Cognitive Behavioral Therapy: methods
KW  - Amyotrophic lateral sclerosis (Other)
KW  - Family caregivers (Other)
KW  - Participatory approach (Other)
KW  - Psychotherapy (Other)
KW  - Supportive care (Other)
LB  - PUB:(DE-HGF)16
C6  - pmid:41057832
DO  - DOI:10.1186/s12883-025-04440-w
UR  - https://pub.dzne.de/record/281635
ER  -