Perspectives on and Experiences With Remote Monitoring and Patient-Initiated Care Among Norwegian Patients With Axial Spondyloarthritis: Qualitative Study (Preprint)

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 prompt therapy adjustments. Typically, patients with axSpA attend prescheduled hospital visits, but once stable disease has been attained, these seldom align with periods of high disease activity. Remote monitoring and patient-initiated care offer flexible, need-based, follow-up options. However, knowledge about how patients with axSpA perceive and experience these approaches is limited. To effectively implement these strategies in clinical practice, understanding patient perspectives is crucial. This study aims to explore how patients with axSpA perceive and experience remote monitoring and patient-initiated care. Our qualitative study was embedded in a randomized controlled trial. Participants were allocated to either usual care, remote monitoring, or patient-initiated care. The 2 intervention groups had no prescheduled visits and used a remote monitoring app, but only the remote monitoring group received monitoring by health care professionals. Semistructured interviews were conducted with 18 participants from the intervention groups to explore their experiences. The interviews were audio recorded, transcribed, anonymized, and analyzed using thematic analysis. Participants provided informed consent. Eighteen patients (11 men and 7 women, aged 26-65 years) participated, 10 from the remote monitoring group and 8 from the patient-initiated care group. Transcripts were analyzed into four key themes: (1) “I don’t need to go to the hospital just to report I’m doing well.” When patients felt well, they perceived in-person consultations as less important. They acknowledged health care resource challenges and were willing to adapt but expressed concerns about rapid technological advancement, fearing it could exclude vulnerable groups. They emphasized the need for shared decision-making in determining follow-up strategies; (2) “It feels safer to meet healthcare personnel in person” highlighted participants’ preference for in-person interactions as a safety net for detecting changes or signs of disease. They felt more secure when communicating face-to-face with health care professionals; (3) Remote monitoring can promote a sense of freedom and self-efficacy. The app provided autonomy, enabling patients to monitor their health without disrupting daily routines and promoting their health competency; and (4) Practical challenges and limitations of technology affect sense of security. Concerns about app deactivation, digital privacy, and lack of personalized settings negatively affected confidence in technology and sense of security. Remote monitoring and patient-initiated care can adequately meet the needs of patients with axSpA with low disease activity, reducing unnecessary visits and enhancing self-efficacy. However, these approaches should not be one-size-fits-all. Care must adapt to evolving disease activity, circumstances, and preferences. Human interaction and support remain crucial, and future technological developments must address practical challenges to ensure user-friendly and reliable interfaces.