Taking care of patients with rheumatic diseases: development of a new model of telenursing for chronic and non-urgent health problems

The COVID-19 pandemic that suddenly exploded in early 2020 put a strain the healthcare systems around the world, highlighting all the strengths and weaknesses. Unfortunately, Italy was the second nation to be affected by the new virus and had to face the emergency without having a minimal experience. In this context, our National Health System, among the best in the world, has responded superlatively according to its possibilities, obviously with many difficulties as the sizing of the system was calibrated with respect to an ordinary management of health needs and oriented mostly to territory and domiciliary care. One of the emerged critical points was certainly the severe stress suffered by hospitals and, in some cases, the inability to sufficiently drain the strong increase of patients. In this context, the burden of Rheumatic and Musculoskeletal Diseases (RMDs) increased and is still increasing, even after the first 2 years of the pandemic. RMDs are chronic, inflammatory and/or autoimmune diseases which significantly impact on patients' quality of life and socioeconomic productivity. In particular, periods of remission and recrudescence characterise the lives of patients with RMDs, leading not only to significant suffering but also to huge costs to society, in terms of social and healthcare assistance and the work productivity loss of the patients. They are the leading cause of disability in developed countries and consume a large amount of health and social resources. Thus, research, prevention, and the treatment of RMDs in Europe represent important strategies to facilitate greater workplace participation, productivity, and the sustainability of healthcare systems. Therefore, in the pharmacological field, over the past 20 years the therapeutic approach to RMDs has been oriented towards a progressively early and targeted treatment, developing new biological drugs and small molecules aiming to slow or stop the progression of the disease before irreversible anatomical or organ damages has been established. The latest approach to RMDs such as Rheumatoid Arthritis is the “treat to target” approach, with a strict follow up of the patient known as “tight control”, in order to detect eventual recrudescence or exacerbation early. Moreover, from a health professional perspective, there are important aspects that should be considered when taking care of RMDs patients, especially SSc patients. Not only the complexity of the disease, but also the difficulty in coordinating the multidisciplinary team and the fragmentation of the care provided by the healthcare systems, make it difficult to develop a homogeneous and practical, as well as effective, path of care for SSc patients, which encompasses the whole person and considers all issues affecting the physical and mental sphere. Indeed, in the field of rheumatology, characterized by chronicity, complexity of care, difficulty in fully understanding the pathophysiological process behind the diseases, with high disease burden, economic and societal burden among many other critical aspects, studying and assessing health literacy represents a must to enhance the patients’ ability to take part actively in the process of clinical care. Albeit, understanding the concept of health literacy, as a determinant of health outcomes, is not a linear and easy process. According to the conceptual map presented in the study of Hickmann et al., when dealing with patient engagement, empowerment and education, health literacy is part of the competencies included in the patient enablement, which focuses on the general acquisition of skills and knowledge to engage in healthcare. Indeed, as stated by the authors, the concept of patient enablement is very similar to that of patients empowerment, and both are needed to assure the active participation of our patients in the healthcare process, which ultimately improve the shared decision making process, self-care skills, and their self-management strategies. As a result, one aspect of patient enablement is health literacy, defined as "a set of personal, transferable skills that can be developed to support greater independence in health decision-making through a structured exposure to targeted and personalized information". The abovementioned map illustrates which concepts could function as levers to others, for example, an intervention aiming at patient empowerment would have to focus on improving patient enablement and health literacy, as well as a patient-centred approach to enhance the empowerment process of patients. Thus, we comprehend how health literacy plays a key role throughout the process of pursuing better health outcomes, and we included health literacy, and one of its important components such as “digital health literacy”, as part of outcomes to assess and study in our population. As already mentioned, telehealth and telemedicine, in the current digital era, play a key role at every stage of providing health services from diagnosis, treatment implementation and maintenance, prevention measures to conduction of clinical research and patients’ education. However, in the rheumatic field, there is lack on evidence specifically on digital health and Systemic Sclerosis, yet there are several studies on RA and OA. During the PhD years, our researches focused to telemedicine and digital health in the rheumatic field. Despite the present dissertation addressed SSc health needs, the literature reviews and the experience dealt with RMDs patients in general. In the first section, we present results about a survey on the acceptance of telemedicine by RMDs patients, and then a narrative review has been performed to identify important aspects of telemedicine. In the meantime, we published the experience of our Rheumatology Unit during the first wave of the pandemic, in order to share the strengths and limitations of telemedicine as experienced by our healthcare providers and patients involved. In the last few years, the literature on telemedicine and digital health has increased exponentially, and recommendations on how to implement and include telemedicine approaches in clinical practice are still lacking. Indeed, we then performed a systematic literature review, to delve into this topic and identify which digital tools are used in the studies with RMDs patients and which outcomes they addressed. Interesting results have emerged, allowing us to hypothesize implications for clinical practice. In conclusion, a proposal for a telenursing approach to manage SSc patients was shaped by the preceding chapters, which include numerous published or in-press studies. This approach allows for continuity of care and a customized assessment based on the patients' actual health needs. Given the complexity of care that characterizes SSc, a general model for the management of SSc patients assumes the risk of not meeting each patient's needs. This is especially true for clinical manifestations, which occasionally go unreported by patients because of waiting periods until the next consultation with the referring rheumatologist. Additionally, patients may perceive SSc as a complex disease even though they do have the necessary knowledge and communication skills. A generic mobile application, or website platform for the management of one or two health outcomes cannot be effective within a person-centred model, where the main goal is to tailor the patients’ management and answer to health-related needs, while prioritizing the individual needs, preferences, and experiences. Besides, a well-structured and validated telenursing model for health outcomes monitoring will be successful only if it considers the complexity not only of the disease but also of the healthcare system, and future researches will be focused on developing and validating such proposal.