Patient-Initiated Follow-Up (PIFU) as reorganized support for increased patient involvement – focus group discussions among patients’ with inflammatory arthritis

Abstract

Background: Inflammatory Arthritis is characterized by lifelong medical treatment and an unpredictable trajectory because of the fluctuating nature of the diseases. Proactive disease management is recommended, which includes close monitoring of disease activity that traditionally has been ensured by outpatient visits to rheumatologists at various fixed intervals. Internationally, there is a growing interest in how healthcare systems can be more flexible, individual-oriented and increasingly involve patients with lifelong diseases in their own treatment and care. We aimed to explore how patients with Inflammatory Arthritis with low disease activity or remission (DAS-CRP < 2.9) experience patient involvement in a reorganized follow-up care based on flexibility and patient-initiated contact. Methods: We conducted a qualitative study based on four mixed group discussions focused on patients with inflammatory arthritis (rheumatoid arthritis [n = 21], axial spondyloarthritis [n = 3] and psoriatic arthritis [n = 1]) participating in a reorganized follow-up care. Changes in follow-up included access to a nurse and patient-initiated follow-up (PIFU). The analysis was based on content analysis. The reporting adheres to the Consolidated Criteria for Reporting Qualitative Research (COREQ). Results: In total, 25 patients (20 females (80%), mean age 61.8 [range 28-79]) participated. We identified three categories. 1) Patient-Initiated Follow-Up do not affect patients' perceived support in disease control; this refers to patients' experience of more time available through better resource utilization, as well as trust that access to professional support would be available whenever needed. The category 2) Information is valued by patients to delineate responsibilities in a new patient role reflects patients' uncertainty in the transition to PIFU, combined with confusion about the distribution of responsibilities. 3) Patients need both extended perspectives of their arthritis and focused dialogue is about expanding patients' understanding of their arthritis by interaction over time with both a rheumatologist and a rheumatology nurse in a focused dialogue to involve the patient.

Telemedicine in rheumatology: a mixed methods study exploring acceptability, preferences and experiences among patients and clinicians

“…This is a source of inefficiency and frustration currently in the UK [ 38 ], and addressing it would greatly improve patient empowerment, satisfaction and self-management. Greater use of patient-initiated follow-up (PIFU) [ 39 ] may also reduce existing inefficiencies and sub-optimal care from the current dominant model of reviewing rheumatology patients according to timescales rather than disease activity. However, this study has demonstrated that a move towards further PIFU urgently requires improved administrative systems in some rheumatology departments to ensure a prompt, appropriate response to the vast increase in patient-initiated contact.…”

Digitally-supported patient-centered asynchronous outpatient follow-up in rheumatoid arthritis - an explorative qualitative study

“…Interestingly, parts of the validated questionnaire used (RAPID3) seemed outdated or not clear enough for many patients, highlighting the need for continuous reevaluation. A PIFU-based strategy has been demonstrated to be safe, yet previous qualitative research revealed that it also causes patient anxiety [27] due to more patient responsibility [33] and implementation can be facilitated by increasing the responsiveness of the system and the system incorporating regular disease monitoring. Overall, we believe a safety net in form of planned semi-automated asynchronous monitoring provides a balanced risk-benefit ratio [15].…”

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“…However, previous works on this subject, while finding patients appropriately knowledgeable to monitor their own health status, found high levels of confusion as to the distribution of responsi-bility between themselves and their clinician. 12 Consequently, care must first be taken to delineate these responsibilities, and provide greater community support to those with increased clinical complexities.…”