Patients’ Needs Concerning Patient Education in Axial Spondyloarthritis: A Qualitative Study

Yvonne M. van der Kraan*, Davy Paap, Niels Lennips, Else C.A. Veenstra, Freke R. Wink, Stan C. Kieskamp, Anneke Spoorenberg

*Bijbehorende auteur voor dit werk

    OnderzoeksoutputAcademicpeer review

    1 Citaat (Scopus)
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    Introduction: Within the EULAR recommendations, patient education (PE) is stated as the basis of the management of axial spondyloarthritis (axSpA). However, educational needs are scarcely qualitatively studied in axSpA. Therefore, we aimed to explore experiences and needs of PE in patients with axSpA. Methods: A phenomenological approach was used, with semi-structured in-depth interviews with patients with axSpA including broad variation in characteristics. Thematic analysis was applied. To enhance credibility, data saturation, research triangulation, peer debriefing, member checking, theoretical notes, and bracketing were performed. Results: Three interrelated themes regarding PE were identified from 20 interviews: illness perception, content, and ‘availability’. Illness perception affects how patients experience and process PE, which consequently influences coping strategies. Prognosis, treatment, and coaching to self-management were identified as the most important content of PE. Regarding ‘availability’, face-to-face PE is preferred for exploring needs, supplemented by self-education, which can be freely applied. Additionally, sufficient time and a comprehensible amount of information were important and participants emphasized the need for axSpA-tailored information for relatives and friends. Participants reported a trusting patient–healthcare provider (HCP) relationship, and multidisciplinary and interdisciplinary attunement between HCPs as prerequisites for effective PE. Conclusions: This first qualitative study exploring patients’ experiences and needs of PE in axSpA revealed that prognosis, treatment, and coaching to self-management are important regarding content, and the combination of face-to-face contact and self-education the preferred modalities. It seems essential that patients’ illness perceptions are taken into account for effective PE. These results add relevant insights for future PE guidelines in axSpA.

    Originele taal-2English
    Pagina's (van-tot)1349-1368
    Aantal pagina's20
    TijdschriftRheumatology and Therapy
    Nummer van het tijdschrift5
    StatusPublished - okt.-2023

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