Experiences of patients and healthcare providers with patient-initiated care and asynchronous telemonitoring in spondyloarthritis: A qualitative study

Background: The management of spondyloarthritis (SpA) typically involves regular, pre-planned, in-person follow-up appointments. The execution of this strategy in practice is becoming increasingly challenging due to its time- and resource-demanding nature. A potential alternative is patient-initiated follow-up (PIFU), where appointments are only planned when considered necessary by the patient, combined with asynchronous telemonitoring (TM) to remotely monitor the patient between appointments. The effectiveness of this new approach compared to usual care for SpA patients with stable disease was investigated in a 1-year randomised controlled trial (TeleSpA) [1]. In addition, exploring the subjective experiences of patients and healthcare providers (HCPs) with PIFU/TM is pivotal for future implementation in practice.

Objectives: To evaluate the experiences of patients with SpA and their HCPs with PIFU/TM compared with usual care, and to identify prerequisites for its sustainable implementation.

Methods: Individual, semi-structured interviews were conducted with purposefully selected patients, rheumatologists and rheumatology nurses from two centres, who all participated in the TeleSpA trial. Interviews focused on experiences with receiving or delivering rheumatology care as usual prior to TeleSpA, and how PIFU/TM was experienced as an alternative approach. All interviews were thematically analysed.

Results: Twenty-one patients, six rheumatologists and three rheumatology nurses participated (Table 1). Six themes were identified during the interviews (Figure 1). Past experiences with usual care: The perceived non-necessity of frequent consultations in stable SpA, and the overly passive role of patients were identified as key shortcomings of usual care. Acceptability: The vast majority found PIFU/TM acceptable as an alternative follow-up approach for motivated patients with stable SpA who possess sufficient digital and health literacy. Responsibility: Most patients felt no burdensome changes to their personal responsibilities. Time investment: Only patients who were actively employed or had long commute times to the hospital reported time savings. HCPs hardly experienced time savings due to an increase in administrative work, although some did notice more flexibility in their daily planning. Communication and collaboration: Both in-person and remote communication between patients and HCPs ran smoothly. Some patients experienced improved self-efficacy and collaboration with HCPs due to improvements in disease insight from regularly filling in questionnaires. A few HCPs additionally noticed enhanced shared decision-making with their patients due to the availability of easily accessible, longitudinal patient data. Prerequisites and future prospects: All indicated willingness to continue with PIFU/TM. Pivotal prerequisites identified for PIFU/TM were the presence of infrastructure to conduct ad hoc diagnostic tests (such as blood tests or radiography), the ability to rapidly plan impromptu in-person appointments when necessary, availability of technical support, and the use of a user-friendly digital tool integrated with existing hospital software. Criticisms of PIFU/TM in its current state were the overly elaborate nature and lack of personalisation of the (validated) questionnaires used, and sporadic logistical challenges faced when planning extra appointments at the outpatient clinic.

Conclusion: PIFU/TM was perceived as an acceptable approach to the follow-up of motivated patients with stable SpA who possess adequate digital and health literacy. Ensuring the ability to rapidly plan in-person appointments when indicated and the availability of technical and logistical support to patients and HCPs are essential for its sustainable implementation. Fine-tuning the design and delivery of questionnaires as part of TM is an opportunity for future research.