Co-production of a structured integrated post pulmonary embolism care model (Attend-PE)

Abstract

Abstract Background More than half of patients with pulmonary embolism (PE) develop persistent functional limitation and experience lower quality of life (1). To mitigate long-term complications, the European Society of Cardiology clinical guidelines on PE management recommends an integrated model for patient care after PE. However, there is currently no consensus on what such an optimal follow-up strategy should include, and high-quality evidence to provide guidance is lacking (1,2). Purpose To describe the co-production of a structured model for PE follow-up. Methods This study is part of the project - A structured Integrated post PE care model (Attend-PE) aimed at developing and testing the effectiveness of a structured, integrated and patient-centred follow-up care model for patients with PE in Denmark. The co-production of the Attend-PE model was conducted from October 2021 till June 2022, featuring user-centred and participatory design techniques. This methodology was combined with a structural stepwise approach based on Intervention Mapping, to ensure the developed model was founded on evidence and theory (3). Results In accordance with the Intervention Mapping protocol, a national panel of stakeholders was formed, and a needs assessment was conducted. The needs assessment comprised a mapping of PE follow-up at all main sites treating PE in Denmark (18 hospitals), based on a co-design process with patients and health care professionals inspired by the patient journey method. To supplement this, a literature search was conducted to identify further knowledge concerning the follow-up care needs and preferences of patients with PE, as well as the optimal clinical management of PE follow-up. Based on this, the overall goal and performance objectives of a structured follow-up care model were formulated, laying the foundation for co-production workshops. In two full-day workshops, patient representatives and healthcare professionals, as well as experts in the field of PE, developed the components, scope, and sequence of the Attend-PE model. Subsequently, the structure and organization of the follow-up model were refined during online workshops, and a working group produced patient education material. The Attend-PE model (Figure 1), outlines a systematic strategy for post-PE in-hospital follow-up, involving patient education, the content and frequency of individual follow-up consultations, and the application of patient reported outcome measures to actively assess physical and psychological well-being. This model supports an individualized post-hospitalization follow-up care plan tailored to the patient's specific needs. Conclusion(s) The co-production process was successful in developing a structured follow-up model for patients with PE which was based on patients’ needs and preferences, as well as the clinical experience and perspectives of healthcare providers, and was in line with current clinical guidelines.Attend-PE model