Zusammenfassung
Die gesundheitsbezogene Lebensqualität ist ein vielschichtiges Konstrukt zur Beschreibung des individuellen Krankheitserlebens. Patientenberichtete Angaben (PRO) können diese adäquat abbilden und werden inzwischen auch mithilfe elektronischer und mobiler Erfassungssysteme erhoben. Typische und elementare Bestandteile der PRO sind z. B. Krankheitssymptome und die therapiebedingte Toxizität, deren Einschätzung und Bewertung sich zwischen Patienten und Behandlern oft stark unterscheidet. Behörden fordern bereits seit Langem die Verwendung von PRO, u. a. bei zulassungsrelevanten Fragestellungen. Mobile und elektronische Lösungen und Interventionen können auch dazu beitragen, patienten- und therapierelevante Endpunkte wie Lebensqualität, Verträglichkeit und Effektivität zu verbessern. Außerdem ist die elektronische Erfassung von PRO auch in der täglichen Routine möglich. Individuelle und spezifische Fragebögen, wie sie aktuell z. B. für die Erfassung der Nebenwirkungen entwickelt werden, stellen eine wesentliche Ergänzung dar. Leitlinien und Standards sind zunehmend verfügbar für Forschung und Routine.
Abstract
Health-related quality of life is a complex construct for describing the individual experience of illness. Patient-reported outcomes (PRO) can adequately reflect this and are now also collected using electronic and mobile recording systems. Typical and elementary components of PRO are, for example, symptoms of disease and treatment-related toxicity. There is often a discordance between patients’ and clinicians’ perception of these components. Authorities have been demanding the use of PRO for a long time, for example in approval-related issues. Mobile and electronic solutions and interventions can also contribute to improving patient-relevant and treatment-relevant endpoints, such as quality of life, tolerability and effectiveness. In addition, PRO can also be electronically recorded in the daily routine. Individual and specific questionnaires, such as those currently being developed for the recording of adverse drug reactions, are an essential supplement. Guidelines and standards are increasingly available for research and routine.
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M. K. Schuler, M. Günther, U. Jaehde und L. Hentschel geben an, dass kein Interessenkonflikt besteht.
Für diesen Beitrag wurden von den Autoren keine Studien an Menschen oder Tieren durchgeführt. Für die aufgeführten Studien gelten die jeweils dort angegebenen ethischen Richtlinien
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Schuler, M.K., Günther, M., Jaehde, U. et al. Lebensqualität in der digitalen Transformation. Forum 35, 391–395 (2020). https://doi.org/10.1007/s12312-020-00842-8
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DOI: https://doi.org/10.1007/s12312-020-00842-8
Schlüsselwörter
- Patientenberichtete Angaben
- Gesundheitsbezogene Lebensqualität
- Unerwünschte Ereignisse
- Mobile Erfassung
- Computeradaptives Testen