Elevating the Standard of Care for Patients with Psoriatic Arthritis: 'Calls to Action' from a Multistakeholder Pan-European Initiative.

INTRODUCTION: Psoriatic arthritis (PsA) is a complex, progressive, and often debilitating disease. Despite recent advances in treatment, numerous unmet needs in patient care persist. Rheumacensus is a multistakeholder, pan-European initiative designed to identify ways to elevate the standard of care (SoC) and treatment ambition for patients with PsA, using the perspectives of three key stakeholder groups: patients, healthcare professionals (HCPs) and payors. METHODS: Rheumacensus followed three phases: an insights-gathering workshop to identify current unmet needs in PsA and an area of focus for the project, a modified Delphi process to gain consensus on improvements within the agreed area of focus, and a Consensus Council (CC) meeting which used consensus statements as inspiration to generate 'Calls to Action' (CTA)-practical measures which, if implemented, could elevate the SoC for patients with PsA. RESULTS: The Rheumacensus CC consisted of four patient representatives, four HCPs and four payors. All 12 members completed all three Delphi e-consultations. The shared area of focus that informed the Delphi process was "patient empowerment through education on the disease and treatment options available, to enable patient involvement in management". Four key themes emerged from the Delphi process: patient empowerment, patient knowledge and sources of education, patient-HCP consultations, and optimal initial treatment. Statements within these themes informed 12 overarching CTA, which focus on the need for a multistakeholder approach to implementing a paradigm shift towards patient-centred care and improved outcomes for patients with PsA. CONCLUSION: Rheumacensus has identified shortcomings in the current SoC for patients with PsA and provides a foundation for change through practical CTA. It is hoped that all stakeholders will now take practical steps towards implementing these CTA across Europe to elevate the SoC for patients with PsA.

Inequalities in the care patients with psoriatic arthritis (PsA) receive can be mainly explained by poorly coordinated management due to a lack of disease and treatment knowledge. This report is about a programme called Rheumacensus which has the overall aim of improving the standard of care (SoC) for patients with PsA. Rheumacensus brings together the points of view of three key groups involved in the care of people with PsA: patients, payors and healthcare professionals (HCPs) from across Europe. Together, these three groups agreed to focus on patient empowerment through education on the disease and treatment options as a way to raise the SoC. Through a series of exercises­to agree on the current SoC and what needs to be improved­and group discussions, four themes were established which were used by the groups to help them suggest 'Calls to action' (CTA). The CTAs were ideas of how improvements could be made or what needs to be done to improve the care patients receive. The four themes were (1) patient empowerment, (2) patient knowledge, (3) patient­HCP consultation and (4) optimal initial treatment. In total, 12 CTAs were developed across these themes that provide direction and practical next steps which patients, payors and HCPs could take to drive change and make a real difference to patients by improving their care.

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

OBJECTIVE: A steadily increasing demand and decreasing number of rheumatologists push current rheumatology care to its limits. Long travel times and poor accessibility of rheumatologists present particular challenges for patients. Need-adapted, digitally supported, patient-centered and flexible models of care could contribute to maintaining high-quality patient care. This qualitative study was embedded in a randomized controlled trial (TELERA) investigating a new model of care consisting of the use of a medical app for ePRO (electronic patient-reported outcomes), a self-administered CRP (C-reactive protein) test, and joint self-examination in rheumatoid arthritis (RA) patients. The qualitative study aimed to explore experiences of RA patients and rheumatology staff regarding (1) current care and (2) the new care model. METHODS: The study included qualitative interviews with RA patients (n = 15), a focus group with patient representatives (n = 1), rheumatology nurses (n = 2), ambulatory rheumatologists (n = 2) and hospital-based rheumatologists (n = 3). Data was analyzed by qualitative content analysis. RESULTS: Participants described current follow-up care as burdensome. Patients in remission have to travel long distances. Despite pre-scheduled visits physicians lack questionnaire results and laboratory results to make informed shared decisions during face-to-face visits. Patients reported that using all study components (medical app for ePRO, self-performed CRP test and joint self-examination) was easy and helped them to better assess their disease condition. Parts of the validated questionnaire used in the trial (routine assessment of patient index data 3; RAPID3) seemed outdated or not clear enough for many patients. Patients wanted to be automatically contacted in case of abnormalities or at least have an app feature to request a call-back or chat. Financial and psychological barriers were identified among rheumatologists preventing them to stop automatically scheduling new appointments for patients in remission. Rheumatology nurses pointed to the potential lack of personal contact, which may limit the holistic care of RA-patients. CONCLUSION: The new care model enables more patient autonomy, allowing patients more control and flexibility at the same time. All components were well accepted and easy to carry out for patients. To ensure success, the model needs to be more responsive and allow seamless integration of education material. TRIAL REGISTRATION: The study was prospectively registered on 2021/04/09 at the German Registry for Clinical Trials (DRKS00024928).

Unmet Information Needs of Patients with Rheumatic Diseases: Results of a Cross-Sectional Online Survey Study in Germany.

To effectively self-manage a chronic disease, patients require specific education. In clinical routines, rheumatologists and other healthcare professionals often cannot devote the necessary time to adequately educate their patients. Digital technologies such as mobile applications represent promising tools to overcome this problem. This study aims to identify unmet information needs of patients with rheumatic diseases to inform the conception of a mobile education application. An online national survey was developed together with rheumatic patients and rheumatologists and distributed between June and September 2021 via social media (Instagram, Facebook, Twitter), QR code and email. Self-reported rheumatic patients, rheumatologists, specialized rheumatology nurses (SRN) and self-reported relatives of rheumatic patients were eligible to participate in the survey. Three major topics were addressed: (1) How well do patients feel informed about disease-relevant topics; (2) how important do patients rate different disease-relevant topics; and (3) patient willingness to adopt digital education services. Responses of 254 patients and 53 SRN were analyzed. Most patients were female (91%; n = 231), the median age was 48 years and the most common disease was rheumatoid arthritis (23%; n = 59). Only 24% of patients perceived their disease education level as very good or good compared to an SRN estimate of 42%. The three information topics rated as most important (very/important) were: individual disease (98%), medication (94%) and coping techniques (91%). In total, 89% of patients asserted that they would very likely, likely or rather likely use digital education tools in the future to learn about their condition, and 82% of SRN would very likely, likely or rather likely recommend digital information services to their patients. These findings depict currently unmet patient information needs and a high willingness of patients and SRN to use digital education services. A mobile education application is currently adapted based on these results and will be evaluated in a multicenter study.

[Medical assistant-a profession in a state of flux]. / Medizinische Fachangestellte ­ ein Beruf im Wandel.

New treatment strategies and treatment possibilities as well as undertreatment due to the lack of medical specialists especially in rheumatology, necessitate a qualified further training of rheumatological assistant personnel. The increasing independent work of medical and rheumatological assistants expected by physicians with respect to patient management and practice organization, necessitates an intensive cooperation between the two professional groups. The aim is to guarantee the competent treatment of chronically ill patients with rheumatism. Finally, this concept offers the chance of additional professional qualifications for the rheumatological assistant profession and support for rheumatologists in the daily routine. This particularly applies to the engagement at several levels supported by the results of various studies, which indicate tasks that can be delegated to rheumatological assistants and confirm an improvement in the quality of patient care.