Patientenadäquate Information bei Multipler Sklerose – eine systematische Literaturübersicht

Zusammenfassung

Hintergrund: Patienteninformationen können Multiple-Sklerose (MS)-Betroffene im Umgang mit ihrer Erkrankung unterstützen. Bei der Konzeption von evidenzbasierten Schulungen und Informationen sollten die Bedürfnisse, Erwartungen und Wünsche der Betroffenen einbezogen werden. Ziel war es daher, die Informationsbedürfnisse von MS-Betroffenen zu erfassen.

Methode: Systematische Literaturrecherche. Die gefundenen Studien wurden auf Qualität und Relevanz überprüft, die Informationen entsprechend 7 Kategorien extrahiert sowie in eine narrative Synthese überführt.

Ergebnisse: Daten von 44 Studien wurden extrahiert, wobei Design, Qualität, Outcomes und Herkunft der Studien sehr heterogen waren. Nur wenige Studien untersuchten den Informationsbedarf als Hauptaspekt. Die Studien zeigen: komplexe und vielschichtige Informationsbedürfnisse stehen hoch in der Bedürfnisstruktur Betroffener; physiologische Themen werden am häufigsten nachgefragt; der Informationsbedarf unterscheidet sich je nach Krankheitsphase bzw. im Krankheitsverlauf, je nach Krankheitsdauer sowie Krankheitsform; wenige Studien liegen zum lebensphasen- sowie geschlechtsspezifischen Informationsbedarf vor; verschiedene jedoch bevorzugt personengebundene Informationsquellen werden genutzt; die Anlässe zur Informationssuche variieren; die Nutzung ist abhängig von persönlichen Faktoren sowie der Art der gewünschten Informationen; die Qualität der zur Verfügung gestellten Informationen wird ambivalent bewertet. Informationen sollten ohne Zeitdruck, aktuell, fachkompetent, empathisch, in laienverständlicher Sprache und passgenau auf den individuellen Patienten gegeben werden; die Informationen sollten integrativ und schrittweise vermittelt werden und in verschiedenen Formaten verfügbar sein.

Schlussfolgerung: Die heterogenen Informationsbedürfnisse erfordern Schulungen und Informationen, die auf die individuellen Patientenbedürfnisse abgestimmt sind.

Abstract

Background: Patient information can help multiple sclerosis (MS) patients cope with their disease. When developing evidence-based training seminars and information material for MS patients, it is important to take into account their needs, expectations and wishes. Therefore, our goal was to investigate information needs of people living with MS.

Methods: Systematic literature review. Available studies were examined in terms of quality and relevance, information was extracted according to 7 categories and presented in a narrative synthesis.

Results: Data of 44 studies were extracted. The studies varied greatly concerning their study design, quality, outcomes and origin. Only a few studies focused on information needs. Key findings were: patients have complex and multifaceted information needs; the need for physiological information is the most important one; the need for information varied depending on the phase of the disease, its duration and form and during the course of the disease; few studies have investigated information needs according to gender and phase of life; different sources of information were used; personal communication was preferred; the reasons to seek information varied and personal factors and the type of information requested determined the way information was used; the quality of information that was made available was judged ambivalently; patients expected to receive up-to-date information that was tailored to their requirements and provided in a competent, empathic way and comprehensible language without time pressure. Information should be integrated into the patient’s context, be given gradually and made available in different formats.

Conclusion: The heterogeneous information needs require training programs and information that are tailored to the individual patient’s needs.

Schlüsselwörter

Multiple Sklerose - Informationsbedarf - Selbstmanagementschulung - systematische Literaturrecherche

Keywords

multiple sclerosis - self-management education - information needs - systematic literature review

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