Key Findings and Proposals
From the roundtable discussions, it was clear that the challenges faced and the perceived unmet needs by patients differed from country to country, particularly regarding access to treatments and appointments with physicians. However, the following general recommendations were agreed to be important future priorities for disease management from a global patient perspective.
Reducing Time to Diagnosis
The length of diagnostic delay can still be considerable in both AxSpA and PsA. For AS, the gap between disease onset and diagnosis has been reported to range from 5 to 8 years ; however, some studies report an even longer delay . For PsA, an average delay in diagnosis of 5 years was reported in the MAPP study . Although data from the Danish nationwide DANBIO registry suggest distinct improvements in time from symptom onset to diagnosis in both PsA and AxSpA over the last two decades , such changes were not seen in a recent UK study  and therefore require further investigation in future studies.
Diagnostic delay presents a major concern for disease management in both PsA and AxSpA. There is some evidence to suggest that earlier treatment in the disease course is associated with better outcomes [26,27,28] and, conversely, when diagnosis is delayed, clinical outcomes are negatively affected [29, 30]. In AS, a study of 334 patients demonstrated that a delay of more than 10 years before starting anti-TNF therapy resulted in an increase in the likelihood of structural damage, compared with those who had a delay in treatment of at most 10 years . In PsA, even a delay of more than 6 months has been found to contribute to poor radiographic and functional outcomes for patients with PsA .
In light of such findings, recommendations for the management of PsA state that early treatment should be a priority . Additionally, ASAS-endorsed recommendations have been developed to aid the early referral of patients with a high suspicion of AxSpA to rheumatologists , which is often the rate-limiting step in timely diagnosis. One study found a median delay from first record of back pain (in a non-rheumatology setting) to referral to a rheumatologist of about 10 months; however, the time to AS diagnosis following referral was only 1 month .
Identifying patients with suspected PsA or AxSpA can be challenging. Often, patients with PsA will either be misdiagnosed with other similar rheumatic diseases, or remain undiagnosed while showing symptoms of psoriasis [34, 35]. In a study of 1511 patients with plaque-type psoriasis in dermatology clinics, only 15% of the 20.6% patients identified as having PsA had been diagnosed previously . Furthermore, 87.1% of dermatologists and 85% of rheumatologists participating in the MAPP study acknowledged that a failure to connect skin and joint symptoms leads to PsA being underdiagnosed .
Musculoskeletal complaints can account for up to 20% of all consultations in primary care ; therefore, it can often be difficult for general practitioners to identify patients with suspected inflammatory rheumatic disorders. Indeed, AxSpA only accounts for around 5% of cases of chronic back pain , which also increases the difficulty in deciphering which patients require referral to a rheumatologist . In AxSpA, the early differentiation of inflammatory versus mechanical back pain is important because of the major differences in their management and treatment . As such, a number of criteria have been proposed to clinically differentiate inflammatory from mechanical back pain. The Inflammatory Back Pain (IBP) Experts’ Criteria are robust, easy to apply, and have been validated in the international ASAS study on new classification criteria for AxSpA . Therefore, these criteria, where at least four of five of the following parameters are present: (1) age at onset no greater than 40 years; (2) insidious onset; (3) improvement with exercise; (4) no improvement with rest; and (5) pain at night (with improvement upon getting up), are recommended for defining IBP in the ASAS-endorsed recommendations for early referral . Whether these recommendations will prove useful for different non-rheumatic referring specialists has yet to be demonstrated.
Increasing Knowledge and Awareness for Patients and Physicians
Increasing disease awareness and education at the level of both the patient experiencing and physician treating back and/or joint pain may help facilitate early identification and referral of patients with spondyloarthritis. The working group agreed that disease education initiatives focusing on patients with suspected PsA or AxSpA, particularly targeting new (or inexperienced) patients, as well as provision of peer-to-peer support services, are needed to reduce patient delay in seeking a diagnosis. Implementing public awareness programs and increasing spondyloarthritis-focused Internet and website information may also help in this respect . Moreover, enhancing general practitioners’ and other healthcare professionals’ knowledge and awareness about the heterogeneous clinical presentation of PsA and AxSpA through professional education programs, self-administered questionnaires, and referral guidelines is also crucial [42,43,44].
There is some evidence to suggest that implementation of such initiatives can have a positive impact on reducing diagnostic delay. A recent prospective, multicenter controlled study demonstrated that after specific spondyloarthritis-aimed training, a general practitioner’s consideration to refer patients with symptoms of axial and peripheral spondyloarthritis increased by more than 40% . As discussed above, data from the DANBIO registry also suggest marked improvements in the time from symptom onset to diagnosis over recent years . Furthermore, data from two large UK centers show that reported new cases of AS increased by 51% between 2009 and 2013 versus the preceding 5 years .
Disease education and awareness campaigns can also have a positive influence on patient expectations, satisfaction, treatment choices, and thus overall treatment success . By physicians having an active discussion with patients, informing them of possible treatment targets and therapeutic options, including their respective benefit-to-risk ratios, patients can participate effectively in treatment decisions, leading to improved patient satisfaction and clinical outcomes [10, 13, 19, 45]. Indeed, patient involvement in medical decisions is associated with both patient satisfaction and level of information received, thereby promoting the idea that patient education can aid shared decision-making, a cornerstone in the management of rheumatic diseases [46, 47]. Interestingly, there are differences in the level of importance attributed to different aspects of the office consultation between patients and dermatologists . Patients with psoriasis rate communicative aspects of the consultation, such as conveying details of treatment options or side effects of treatment, consistently higher than dermatologists do . Disease education is a prominent requisite for patients, particularly being provided with information on etiology, trigger factors, and treatment .
Nevertheless, in an Italian study focusing on quality of life and unmet needs in patients with spondyloarthritis following the introduction of biologic therapies, although 98% of the study participants agreed that their condition had been explained to them in understandable terms by a general practitioner, approximately 60% reported a requirement for further information and 37.1% felt unsatisfied with the level of information provided during treatment . As part of a project launched by the National Ankylosing Spondylitis Society (NASS) aiming to develop recommendations for improving care for AS patients in the UK, healthcare service utilization was examined . The authors found that only 14.6% of patients had ever attended a disease education session; furthermore, only 12.4% of patients had been invited to attend a patient education program. Of those patients who had attended an education session, 99.1% found them “very useful” or “quite useful”, as defined by a questionnaire . This result supports the concept that patient education is deemed important by the patients themselves, and that more needs to be done to ensure that patients are offered appropriate education.
In a questionnaire designed to identify the educational needs of individuals with AS, patients reported low rates of utilization of written and electronic materials due to not wanting or needing further information; however, the same cohort desired easier access to specialists to answer specific queries . Thus, the results from this survey may suggest a need for more personalized information rather than generic information surrounding disease awareness. In another survey, 68.3% of patients with PsA (N = 105) expressed a need for more information on their condition and over half of the participants were interested in attending educational talks . To this end, EULAR has recently published evidence-based recommendations for patient education to aid the delivery of education across Europe . However, with only ten studies including patients with PsA and AxSpA available to guide these recommendations, further studies are urgently required.
Focusing on Patients’ Priorities for Treatment Goals
In order to improve treatment satisfaction, it is imperative to understand the patient’s priorities when it comes to treatment [10, 13]. From the roundtable discussions, a number of key priorities for treatment were highlighted.
Control of pain emerged as one of the dominant treatment goals for patients with PsA and AxSpA, as it was noted that management of pain often leads to improvement in overall quality of life. Pain is the symptom that is experienced most often in patients with rheumatic disorders  and is the most common reason patients with inflammatory arthritis see a rheumatologist . In fact, the American College of Rheumatology Pain Management Task Force stated that pain may be the most important patient-reported outcome in rheumatology . In the NOR-DMARD registry, approximately 88.5% and 88.2% of patients with PsA and AS, respectively, rated pain as among the top three priorities for improvement and over half of patients rated pain as first priority . Similarly, in the patient-derived Psoriatic Arthritis Impact of Disease (PsAID) questionnaire and the ASAS Health Index, pain was identified as having the highest importance for patients [55, 56].
Other high priorities for patients include fatigue and maintenance of normal social and physical functioning. Indeed, the 2016 OMERACT-endorsed PsA core domain set for measurement in PsA clinical trials, which was developed with significant patient input, now includes both fatigue and social participation as more than 70% of patients reported these as important domains to be considered in PsA clinical trials . Although fatigue levels are high in both PsA  and AxSpA , it can often be hard to manage because of its multifactorial etiology. Studies have indicated that fatigue is mostly associated with disease-related factors, such as disease activity and function, but also with patient-related factors, such as mental health and psychological distress [58,59,60,61,62]. To this end, psychological interventions, such as information on Mindfulness-Based Stress Reduction (MBSR), may prove beneficial for the management of fatigue in rheumatic disorders .
Decreasing work impairment was also a key priority for patients. The impact of PsA and AxSpA on work productivity can be severe; an Italian survey sponsored by the National Association of Rheumatic Patients (ANMAR) revealed that over a third of patients with spondyloarthritis felt limited by their condition in their career progression and personal development . In a large Swedish study of patients with spondyloarthritis, 45% reported reduced work productivity, with a mean reduction of 20% . Decreased work productivity was associated with worse quality of life, disease activity, physical function, and anxiety. Impaired ability to work also has obvious financial implications .
Although not a main focus of discussions, patient organization representatives emphasized the additional burden imposed by psoriasis on patients’ social lives and interactions [55, 66, 67]. Indeed, during validation of the PsAID questionnaire, skin problems were among the most important domains for patients with PsA, with many experiencing feelings of shame due to physical appearance . The impact of psoriasis on the level of treatment satisfaction was also highlighted by patients with PsA . To this end, a recent systematic review and meta-analysis of studies in patients with moderate-to-severe psoriasis indicated that treating to a more stringent target than the widely used PASI 75 may yield more substantial improvements in quality of life . From the physicians’ perspective, clear or almost clear skin (PASI 90–100) is both a desirable and a feasible treatment target.
A major treatment target for spondyloarthritis is remission, with low/minimal disease activity an alternative target for patients with established or long-standing disease . However, the meaning of remission from the patient’s perspective needs to be explored further as it may differ considerably from the physician’s perspective. In a recent study based on nine focus-group discussions throughout Europe, patients with RA characterized remission as decreased daily impact of their condition and the feeling of return to normality . In PsA, a consensus has yet to be reached on the definitions of remission or low disease activity [70, 71]; until these are agreed upon and universally accepted, it will be difficult to implement such targets in clinical practice.
Overall, it is evident that patient-reported priorities warrant further attention when setting or developing treatment goals, which has important implications for treating physicians. A disconnect between the treatment priorities of healthcare professionals (HCPs) and patients was a key topic of discussion throughout the roundtable meeting. Concern was expressed over the apparent disparity between physicians’ treatment goals for patients, which focus on validated assessment measures, and patients’ priorities for treatment, which focus on the impact on quality of life and maintenance of normal social and physical functioning. In light of these issues, attendees felt that practical questions regarding function and participation in daily activities were more relevant than measurement of targets. Often patients wish to discuss the personal, individual implications of their condition with their physicians, asking questions such as how they can participate fully in society or perform daily tasks. Attendees of the roundtable discussions felt that their condition, and their treatment target, should be assessed or chosen on a more practical, and again individual, basis.
Improving Communication Between Patients and Physicians
The divergent opinions on treatment priorities and disease status between the patient and the physician [72,73,74,75] highlight the need to improve communication and patient–physician interactions. Indeed, patients report wanting “to be understood as the whole person, not just the disease”. Furthermore, they are more likely to follow medication regimens if they share their physicians’ belief about causes of health outcomes .
Communicating their concerns and treatment goals effectively to their physician is a common issue for patients with PsA and AxSpA, particularly if they relate to their emotional/personal life and the psychological impact of the disease. For example, patients may be reluctant or too embarrassed to broach personal topics with an HCP. A similar issue has been reported for RA, where only 39% of patients who answered a questionnaire relating to personal relationships felt comfortable discussing such topics with an HCP . Furthermore, a patient’s trepidation to disclose information regarding their wellbeing may prevent them from asking for further psychological help. Indeed, a lack of psychological support was reported by 37.6% of 105 patients with PsA, with 40.6% of patients expressing a need for social support and 29.3% expressing a need for counselling . Visit length and time for social conversation play an important role in patient satisfaction  and, although beyond the scope of this article, short appointment duration is one of the key barriers in the HCP–patient relationship. The utilization of specialist nurses in patient care and management may help in this respect, as reflected in recent EULAR recommendations . Some additional suggestions for improving patient–physician communication are captured in Tables 1 and 2.