The Rising Challenge of Poor Health Literacy of Patients with Systemic Sclerosis: Preliminary Data Identify Important Unmet Needs in an Italian Cohort.

RATIONALE AND AIM: Health literacy (HL) is pivotal for the successful self-management of chronic diseases. Little HL information is currently available in SSc patients; therefore, the present study aims at evaluating the HL levels in an Italian cohort of SSc patients. METHODS: SSc patients were enrolled with the support of Italian patient associations, from September 2022 to March 2023. Health literacy characteristics were derived from the Health Literacy Scale European Questionnaire-16 (HLS-EU-Q16), consisting of 16 items designed on a four-point Likert scale ranging from "very difficult" to "very easy", and three HL levels were identified: inadequate HL (0-8 score); problematic HL (9-12 score); and sufficient HL (13-16 score). RESULTS: Enrolled patients (n = 57, mean age = 59 years, SD = 13.2) were mostly female (98.2%), partnered (73.7%), and unemployed or retired (67.9%). Almost half of SSc patients were diagnosed more than 10 years ago, with first symptoms appearing on average 19 years ago (SD 10.5). In 63% of the participants, the overall health literacy skills were inadequate, or problematic, especially in the health care and disease prevention domains. Indeed, 49.2% of the patients declared difficulty in finding information on treatments for illnesses and where to get professional help (42.1%), 47.6% found difficulty in retrieving information on how to manage mental health problems, and 40.4% declared difficulties in judging whether the information on health risks in the media was reliable. CONCLUSIONS: Our findings show that SSc patients have inadequate or problematic levels of HL, suggesting the need for periodic screenings to uncover poor health literacy skills and to provide tailored and understandable educational material. This study was not registered.

Nursing interventions for patients with rheumatic and musculoskeletal diseases on biological therapies: a systematic literature review.

Investigating unmet needs and identifying the necessary interventions for patients affected by rheumatic and musculoskeletal diseases (RMDs) may help significantly to ensure the continuity and quality of the chronic care pathway. To this aim, the contribution of rheumatology nurses requires further evidence. The aim of our systematic literature review (SLR) was to identify the nursing interventions directed towards patients with RMDs undergoing biological therapy. To retrieve data, a search was carried out in the MEDLINE database, the Cumulative Index to Nursing and Allied Health Literature (CINAHL database), the APA PsycINFO database and the Excerpta Medica Database (EMBASE) from 1990 to 2022. The systematic review was carried out in accordance with the relevant PRISMA guidelines. Inclusion criteria were as follows: (I) adult patients with RMDs, (II) undergoing therapy with Biological Disease-Modifying Anti-Rheumatic Drugs (bDMARDs), (III) original and quantitative research papers in English with available abstract, (IV) specific to nursing interventions and/or outcomes. Two independent reviewers screened the identified records for eligibility according to their title and abstract, full texts were subsequently assessed and, finally, data was extracted. Critical Appraisal Skills Programme (CASP) tools were used to evaluate the quality of the studies included. Among the 2348 records retrieved, 13 articles met the inclusion criteria. These consisted of six randomised controlled trials (RCTs), one pilot study and six observational studies on RMDs. In a total population of 2004 patients, 43% (862/2004) of the cases concerned rheumatoid arthritis (RA) and 56% (1122/2004) of the cases concerned spondyloarthritis (SpA). Three major nursing interventions were identified, namely education, patient-centred care and data collection/nurse monitoring, which were correlated with high satisfaction rates regarding care, increased self-care capacity and treatment adherence among patients. All interventions followed a protocol defined in collaboration with rheumatologists. The large degree of heterogeneity in the interventions did not allow the performance of a meta-analysis. Rheumatology nurses are part of a multidisciplinary team caring for patients with RMDs. Following an accurate initial nursing evaluation, rheumatology nurses can plan and standardise their interventions focusing primarily on patient education and personalised care based on actual needs, such as psychological well-being and disease control. However, the training for rheumatology nurses should define and standardise, as much as possible, the competencies required for the detection of disease parameters. Key Points • This SLR provides an overview of nursing interventions for patients with RMDs. • This SLR considers the specific population of patients on biological therapies. • Training for rheumatology nurses should standardise, as much as possible, the knowledge and methods required for detecting disease parameters. • This SLR highlights the various competencies of rheumatology nurses.

Menstruation-Related Disorders-Dysmenorrhea and Heavy Bleeding-as Significant Epiphenomena in Women With Rheumatic Diseases.

Background: In women with rheumatic diseases (RDs) menstruation-related disorders have never been investigated. The aim of this study was to evaluate gynecological symptoms/disorders in fertile age women with RDs. Materials and methods: All patients (n = 200) filled up a self-administered questionnaire on their gynecological history, menstrual cycle pattern, menstrual-related symptoms, and quality of life (QoL). The RD group was then compared to a control group of 305 age-matched fertile age women. Results: Among patients with RDs, 58% had arthritis, 40% connective tissue diseases (CTDs), and 1.5% systemic vasculitis. No differences were observed between CTDs and arthritis, except for a family history of HMB which was more common among women with CTDs (p < .01). When compared to controls, women with RDs reported more frequent heavy menstrual bleeding (HMB) during adolescence (51.7 and 25.4%, respectively; p = .0001) and adult life (37.7 and 25.9%, respectively; p = .0065). Also, dysmenorrhea in adolescence was significantly more common among cases (55.6 and 45.4%, respectively; p = .0338). Gynecological pain (dysmenorrhea, non-menstrual pelvic pain, dyspareunia, dysuria, and dyschezia) in patients with RDs was more frequent than in controls (p = .0001, .0001, .0001, .0001, .0002, respectively). Considering women who reported moderate and severe symptoms in RDs, dysmenorrhea and dyspareunia remain significantly more frequent in women with RDs than in controls (p = .0001; p = .0022; respectively). QoL scores were significantly reduced in women with RDs, either in physical (p = .0001) and mental domains (p = .0014) of short-form 12. Conclusion: Women affected by RDs frequently presented menstruation-related disorders; thus, female patients with RDs should be questioned about gynecological symptoms and referred to the gynecologist for an accurate evaluation.

The positive side of the coin: Sars-Cov-2 pandemic has taught us how much Telemedicine is useful as standard of care procedure in real life.

Patients and health workers were at high risk of infection during the Sars-Cov-2 pandemic lockdown. For this reason, other medical and clinical approaches such as Telemedicine were necessary. Despite Telemedicine was born before COVID-19, the pandemic was the opportunity to accelerate a process already underway for at least a decade and to blow all the barriers away. Our aim is to describe the experience of Telemedicine during and immediately after the first lockdown to assure the follow-up in a 'virtual' outpatient clinic dedicated to Rheumatic and Musculoskeletal Diseases (RMDs) and to give an overview of Telemedicine in the rheumatology field. We retrospectively evaluated the patient flow to our rheumatology division from March to September 2020 and, in accordance with local restrictions, three periods were selected. In the 1st period, 96.96% of the outpatient clinic cases were shifted to Telemedicine; these decreased to 52.45% in the 2nd period, while the 3rd period was characterized by the return of the patients at the clinic (97.6%). Diagnostic procedures were postponed during the 1st period, reduced drastically during the 2nd and performed regularly during the third period. Intravenous infusions were maintained as much as possible during the three periods, to assure therapeutic continuity. Shifting stable patients to Telemedicine has the potential to allow continuity of care, while reducing the risk of contagion during a pandemic. In the next future, the integration of Telemedicine as standard of care for specific clinical applications might assure assistance for RMDs patients also in non-pandemic conditions.