GROW self-management support

Abstract

The rheumatology department of ErasmusMC wants to improve the effectiveness of their future Psoriatic arthritis and Rheumatoid arthritis care paths. The expected lack of capacity on the department asks to solve this problem in a capacity-efficient way. Including remote monitoring in the care path and shifting towards a self-management approach, where the patient takes an active role in their care path, create opportunities for this. Currently, patients with a lower socioeconomic position are associated with limited health skills and lower disease outcomes than patients with a higher socioeconomic position. When designing a support approach that asks for more self-reliance of the patients, it is important to take this patient group’s specific characteristics and needs into account to prevent the gap in disease outcomes from increasing further.

This thesis project aims to find out what the future hospital self-management support should look like to better support patients with a lower socioeconomic position in self-managing their disease and what opportunities the remote monitoring intervention that ErasmusMC is currently designing could provide in this

A user-centered design approach was used to define and solve this complex problem were both stakeholders, including the patients as well as the healthcare workers, were included during both the research and the deisgn phase of the project.

Research revealed that in the current situation, a lacking communication about the topic of self-management between healthcare workers and patient causes the patient to start off their self-management journey with an insufficient knowledge base, negatively influencing their ability and motivation to take an active self-management role. Along their journey, patients’ issues in developing an understanding of the personal disease manifestations and thinking in a solution-oriented way decreases this ability and motivation further.

Through co-creation with the stakeholders a future support approach was designed, consisting of a communication approach and a home support app. The support approach focuses on establishing a clear, consistent and engaging way of communicating about the topic of self-management between healthcare workers and patients and guiding and engaging the patient in developing an understanding of their disease and its management.

Evaluation showed that the support approach increases the patient’s ability and motivation to take an active self-management role and provides healthcare workers a structure that supports them in obtaining input from their patients and conveying self-management information in a clear and engaging way. The benefits the support approach could establish regarding patient’s health outcomes and self-reliance seem to outweigh the resources needed to establish this. Enabling connection with future remote monitoring interventions would positively influence the viability of the concept further. Further evaluation is needed to validate the actual effect of the support approach on the longer term.

The insights gained during this project about defining and modeling self-management, communicating about self-management and the characteristics and pains of patients with a low socioeconomic position show opportunities for future research and potential for generalization over the broader health domain.