In the contemporary healthcare climate, we are acutely aware that our resources are finite. This is particularly pertinent in government-funded healthcare settings, where clinical teams often face the challenge of meeting increasing patient demand with static or dwindling capacity.1-4 Such is the reality for long-term conditions managed in the outpatient setting such as rheumatoid arthritis (RA).2 There is a need to reexamine our monitoring and management strategies and consider innovative approaches to mitigate the pressure of unnecessary follow-ups. In parallel, there is an evolving societal expectation for efficiency and necessity-driven services. Historical practices of scheduling biannual appointments for patients with long-term conditions, regardless of their disease state, now appear antiquated.

Patients in the 21st century value autonomy over their own health care; this can be promoted by systems that are able to respond to patient requests for urgent review.5 Conversely, more traditional paternalistic models of care can diminish patients’ sense of control by demanding attendance at regular clinic appointments that often do not result in alterations to treatment.6 These seemingly unnecessary appointments may reduce the service’s capacity to see patients promptly during disease flares, further compromising autonomy.

Patient-initiated follow-up (PIFU) is not a new concept, having been described in rheumatology settings over 20 years ago.7 PIFU is predicated on the idea that the patient, rather than the clinician, dictates the timing of clinical encounters. Patients typically receive “backstop” appointments at longer intervals than traditional scheduled follow-up visits but can contact rheumatology services directly to request review for suspected disease flares, medication adverse effects, or other clinical concerns. This significant shift from clinician-determined follow-up has been eagerly received by system managers as a means to reduce outpatient visits. In some health systems, moving greater numbers of patients onto PIFU pathways has become an explicit target.8

Nonetheless, PIFU raises considerable issues that warrant attention. First and foremost, the evidence base for PIFU is not robust at present. The volume and quality of clinical trials scrutinizing PIFU’s impact on hard clinical endpoints are limited and often of low quality.9,10 A notable study, often cited in the literature, dates from an era before biologic therapies were available, raising questions about its relevance in current practice.11 Moreover, many PIFU studies incorporate a 6-month safety net appointment. This deviates from the longer periods between clinical review, sometimes up to 2 years, now observed in practice. Trials designed in this way may underestimate the burden of undetected inflammation that risks driving adverse outcomes in “real-world” PIFU systems, whereas patient satisfaction metrics may be more favorable due to the comparatively high frequency of review. A further critical limitation of the existing PIFU evidence base is the lack of data on PIFU for patients stable on targeted therapies such as biologics.

These issues underscore the need for large trials that evaluate PIFU in the forms in which it is now being widely implemented, and its effect not only on the frequency of clinic visits but also on disease progression and patient-reported outcomes. Only once these studies are performed will we be able to judge whether PIFU is associated with long-term adverse outcomes such as increased disease activity scores, joint destruction, or disability.

A significant concern regarding the implementation of PIFU is its suitability to all patients. Patients with multimorbidity, social vulnerabilities, limited health literacy, or treatment challenges may not be suited to a PIFU model of care. Suitability for PIFU is the focus of the study by Subdar et al in this issue of The Journal of Rheumatology.12 The researchers explored how patient characteristics influence eligibility for PIFU, aiming to quantify the effect of varying eligibility criteria on the care model. These criteria included type of treatment, disease duration, comorbidity burden, and care complexity. The team used data from a retrospective chart review across 2 university-based clinics in Alberta, Canada, drawing upon data from a 12-month window during the coronavirus disease 2019 (COVID-19) pandemic. Their findings, encompassing records from nearly 800 clinic visits from over 350 patients with RA, underscore the intricacies of crafting and applying a PIFU model. Depending on the criteria applied, the proportion of potentially deferrable visits ranged from below 3% to approximately 20%, highlighting the profound effect that even apparently slight changes in eligibility criteria might have on a PIFU model of care.

The authors acknowledge limitations with their analysis, including those related to the retrospective nature of the work, such as the absence of clear documentation of disease activity for the majority of patients, or missing data related to elements of care complexity, such as housing vulnerability or frailty. In a thorough prospective model of PIFU, it is to be hoped that these data will be more complete, though it is important to note that resource constraints may also affect the ability to collect granular patient information of this kind in the real-world setting.

Although stable disease and good disease control are widely accepted as prerequisites for PIFU eligibility, the influence of a patient’s socioeconomic background, health literacy, and comorbid conditions remains less clear. These latter factors will have an enormous effect on the logistics of PIFU because although some populations may be ideal for this type of follow-up, the educational input needed for other patients may be substantially greater to ensure that they are fully informed of the model of care.

The study by Subdar et al12 lays the groundwork for a future clinical trial into PIFU and should be read by any clinician or manager planning to implement a PIFU model. However, perhaps one of the lasting take-home messages alludes to the potential unintended consequences of PIFU. Every clinical contact with a patient presents opportunities to strengthen patient self-efficacy, identify comorbidity, and provide opportunistic health screening for factors such as obesity, smoking, or alcohol consumption. It is hard to quantify the importance of these aspects of care. Under a system in which most appointments are for patients with active inflammatory disease or new symptoms of concern, consultation time will be spent troubleshooting these problems. This potentially leaves little or no space for clinicians to cover other important components of holistic care. As a result, important clinical problems may go unrecognized for long periods until they present symptomatically, leading to patient harm that might otherwise have been prevented.

Similarly, the effect on rheumatology clinical staff of outpatient lists comprised overwhelmingly of patients experiencing disease flares has not been studied. The pauses in the pace of a clinic, during which we review patients who are well and enjoying the benefits of an effective treatment regimen, remind us of the goals we are setting out to achieve for other patients, and offer us cognitive respite amid the more challenging decisions we face in managing inflammatory diseases in the context of multimorbidity. It remains to be seen how the increased burden of clinical decision making and patient complexity will influence patient care and staff retention in the long run.

Medical practice needs to evolve, and we cannot simply continue providing the same models of care that we have done for centuries out of habit. However, we need to remain vigilant for unintended consequences, and we need to modify clinical care based on a robust scientific justification.

EA has attended teaching courses provided by UCB. JG has received honoraria from AbbVie, Biovitrum, BMS, Celgene, Chugai, Galapagos, Gilead, Janssen, Lilly, Novartis, Pfizer, Roche, Sanofi, Sobi, and UCB; and consultant fees for AbbVie, Galapagos, Lilly, and Pfizer. LCC has received grants/research support from AbbVie, Amgen, Celgene, Eli Lilly, Pfizer, and Novartis; consultant fees for AbbVie, Amgen, Boehringer Ingelheim, BMS, Celgene, Eli Lilly, Gilead, Janssen, Novartis, Pfizer, and UCB; and speaker fees for AbbVie, Amgen, Biogen, Celgene, Gilead, Eli Lilly, Janssen, Medac, Novartis, Pfizer, and UCB.

See Patient-initiated follow-up strategy, page 587