Lebensqualität bei Menschen mit schweren intellektuellen Beeinträchtigungen: Entwicklung und Anwendung eines Fragebogens

Background: The quality of life (QoL) of people with severe and profound intellectual disabilities (ID) is a key indicator of their well-being and the planning of care services. The precise and reliable assessment of QoL in this population is challenging due to methodological difficulties. Thus, adapted and validated instruments are urgently needed. Objective: The goal for this study was the development and administration of a theory-based questionnaire for the multidimensional assessment of QoL in individuals with severe ID, which considers cognitive and communicative requirements and enables both self- and proxy-reporting. Methods: Based on theoretical models and practical considerations, 22 items were formulated across five dimensions. Augmented with cognitively accessible design elements and two different response formats, the questionnaire was administered to 133 individuals from 15 residential settings. Results: The developed questionnaire was found to be well applicable for the nuanced assessment of QoL in people with severe ID. High satisfaction was observed particularly in the social dimensions and in objectively perceivable emotional well-being. Lower satisfaction was recorded for subjectively perceivable emotional well-being. Notably, the areas of development and activity showed lowest satisfaction. Conclusion: The findings of this study demonstrate that self-reporting is possible even for individuals with severe ID when appropriate methodological adaptations are applied. The questionnaire provides a valid foundation for assessing QoL and offers valuable insights for the evidence-based development of care services.