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@ARTICLE{Heyne:281635,
      author       = {Heyne, Svenja and Kuzmanova, Adelina and Esser, Peter and
                      Linse, Katharina and Günther, René and Mehnert-Theuerkauf,
                      Anja and Metelmann, Moritz},
      title        = {{H}ow can we reduce psychological burden for patients of
                      amyotrophic lateral sclerosis and their family caregivers? -
                      {I}nsights from the participatory multi-method study
                      'potenti{ALS}'.},
      journal      = {BMC neurology},
      volume       = {25},
      number       = {1},
      issn         = {1471-2377},
      address      = {London},
      publisher    = {BioMed Central},
      reportid     = {DZNE-2025-01158},
      pages        = {414},
      year         = {2025},
      abstract     = {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
                      $(37.5\%),$ 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.Our 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.The trial is
                      registered at ClinicalTrials.gov (number: NCT06441448,
                      registration date: May 28, 2024).},
      keywords     = {Humans / Amyotrophic Lateral Sclerosis: psychology /
                      Amyotrophic Lateral Sclerosis: therapy / Male / Caregivers:
                      psychology / Female / Middle Aged / Aged / Quality of Life:
                      psychology / Adult / Cost of Illness / Surveys and
                      Questionnaires / Cognitive Behavioral Therapy: methods /
                      Amyotrophic lateral sclerosis (Other) / Family caregivers
                      (Other) / Participatory approach (Other) / Psychotherapy
                      (Other) / Supportive care (Other)},
      cin          = {AG Falkenburger},
      ddc          = {610},
      cid          = {I:(DE-2719)1710012},
      pnm          = {353 - Clinical and Health Care Research (POF4-353)},
      pid          = {G:(DE-HGF)POF4-353},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:41057832},
      doi          = {10.1186/s12883-025-04440-w},
      url          = {https://pub.dzne.de/record/281635},
}