JMIR Publications

ABSTRACT

Background:

Axial spondyloarthritis (axSpA) is a chronic inflammatory joint disease affecting the spine and sacroiliac joints, requiring frequent, lifelong monitoring and treatment. This involves regular symptom monitoring, assessing medication tolerance and side effects, and making prompt therapy adjustments. Typical follow-up for axSpA patients involves scheduled hospital visits, but these often don't align with periods of high disease activity. Remote monitoring and patient-initiated care offer more flexible, need-based follow-up options. However, there is limited knowledge about how axSpA patients perceive and experience these approaches. To effectively implement these new strategies in clinical practice, understanding patient perceptions and experiences is crucial.

Objective:

Our aim is to provide insights to inform the effective implementation of remote follow-up strategies in rheumatic patient care by exploring axSpA patients' perceptions and experiences.

Methods:

ur study is related to a randomized controlled trial (RCT) that investigated remote monitoring and patient-initiated care for patients with axSpA. Semi-structured interviews were conducted with some of the trial participants to explore their experiences with the two follow-up strategies. The interviews were audio recorded, transcribed verbatim, and analyzed using thematic analysis. All participants provided informed consent.

Results:

Eighteen patients, comprising 11 men and 7 women aged between 26 and 65 years, participated in the interview study. Ten were in the remote monitoring group, and eight were in the patient-initiated care group. Our analysis of the patient interviews identified four main themes: 1) I don’t need to go to the hospital just to report I’m doing well, 2) I trust ‘real’ people more, 3) Remote monitoring can promote the sense of freedom and self-management and 4) Lack of trust in the technology impacts sense of security.

Conclusions:

AxSpA patients believe in using technology to manage their condition and are willing to take on more responsibility to alleviate pressure on healthcare services. Remote monitoring and patient-initiated care can enhance autonomy, self-management, and engagement. However, a one-size-fits-all approach is unsuitable; follow-ups must adapt to patients' evolving needs and circumstances. Despite the benefits, these strategies must address vulnerabilities and provide reassurance. Patients still value human interaction and support from healthcare professionals. Therefore, remote monitoring should be integrated with personalized and empathetic care to ensure comprehensive support.