TY - JOUR
T1 - Patients’ Needs Concerning Patient Education in Axial Spondyloarthritis
T2 - A Qualitative Study
AU - van der Kraan, Yvonne M.
AU - Paap, Davy
AU - Lennips, Niels
AU - Veenstra, Else C.A.
AU - Wink, Freke R.
AU - Kieskamp, Stan C.
AU - Spoorenberg, Anneke
N1 - Funding Information:
The authors would like to thank all patients who participated in the GLAS cohort and acknowledge Mrs. S. Katerbarg, Mrs. B. Toonder, Mrs. A.A.H. van der Veen-Hebels, Mrs. M. Middelkoop-Boon, and Mrs. E. Markenstein for their help in recruiting participants for the study. No funding or sponsorship was received for this study or publication of this article. The Rapid Service Fee was funded by the authors. Yvonne van der Kraan, Niels Lennips, Else Veenstra, Davy Paap and Anneke Spoorenberg designed the study. Yvonne van der Kraan, Niels Lennips and Else Veenstra conducted the interviews. Initial analysis was carried out by Yvonne van der Kraan, Niels Lennips and Else Veenstra. Yvonne van der Kraan and Davy Paap conducted the main analyses in consultation with Stan Kieskamp and Anneke Spoorenberg. Yvonne van der Kraan wrote the main manuscript text in consultation with Freke Wink, Davy Paap and Anneke Spoorenberg. All authors discussed the results and commented on the manuscript. Yvonne van der Kraan, Davy Paap, Niels Lennips, Else Veenstra, Freke Wink, Stan Kieskamp and Anneke Spoorenberg have nothing to disclose. Approval for this study was obtained from the local ethics committees of the University Medical Center Groningen (UMCG) and the Medical Center Leeuwarden (MCL), TPO365,604. The study was conducted in accordance with the Declaration of Helsinki. All participants provided written informed consent. Consent for publication was obtained. The interviews underlying this article cannot be shared publicly due to the privacy of individuals that participated in the study. The data will be shared on reasonable request to the corresponding author.
Publisher Copyright:
© 2023, The Author(s).
PY - 2023/10
Y1 - 2023/10
N2 - 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.
AB - 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.
KW - Axial spondyloarthritis
KW - Illness perception
KW - Interviews
KW - Patient education
KW - Qualitative research
U2 - 10.1007/s40744-023-00585-7
DO - 10.1007/s40744-023-00585-7
M3 - Article
AN - SCOPUS:85166252915
SN - 2198-6576
VL - 10
SP - 1349
EP - 1368
JO - Rheumatology and Therapy
JF - Rheumatology and Therapy
IS - 5
ER -