(Un)disclosed. Disease disclosure in people living with rheumatic diseases: An exploratory study.

OBJECTIVE: Little is known about disease-related disclosure (DD) in patients with rheumatic musculoskeletal diseases (RMDs). We aim to investigate DD behaviors and to explore which socio-demographic, clinical and psychological factors play a role in this self-disclosure process among patients with RMDs. METHODS: A cross-sectional Italian nationwide study captured DD in RMDs in different contexts (workplace, family, friends, partner, social networks). An ad hoc survey was developed and disseminated by the Patients' Association ALOMAR ODV (Lombard Association for Rheumatic Diseases) between June and July 2020. Patient demographics, clinical data, and questionnaires assessing anxiety, depression, anticipated stigma, patient health engagement, perceived social support, and perceived general health status were collected. RESULTS: There were 376 rheumatic patients who completed the survey. There were 73.9% of the participants who talk to others about their RMD "sometimes"; 18.7% disclose their RMD "always/very often", while 7.4% "never" talk about their RMD. A significant association was detected between DD and both perceived visibility (P = .04) and psychological support (P = .01). Moreover, participants who never/sometimes disclose their RMD reported significantly lower scores in the "Total" Social Support (P < .01) and in the "Friends" subscale (P < .001) compared to others. Psychological support and the "Friends" subscale were the only significant predictors of DD (both P = .002). CONCLUSIONS: The majority of RMD patients disclosed their disease "sometimes". The DD behavior is not associated with any specific demographic or clinical variables. Further research on the subject might help to foster better DD decision-making processes for rheumatic patients in different contexts of daily life.

Patient Perception of Depressive Symptoms in Rheumatic Diseases: A Cross-sectional Survey.

OBJECTIVES: The presented study aimed to explore the presence and the self-identification of depressive symptoms among patients with rheumatic musculoskeletal diseases (RMDs) through the use of the Patient Health Questionnaire (PHQ-9). METHODS: Between June and October 2019, patients from the regional association for people with RMDs in Lombardy, Italy (ALOMAR), were invited to participate in a cross-sectional online survey. Participants completed PHQ-9 along with a survey about their perception of depressive symptoms. Patients were stratified according to PHQ-9 score as follows: not depressed (<4), subclinical or mild depression (5-9), moderate depression (10-14), moderately severe depression (10-14), and severe depression (20-27). Descriptive statistics and analyses of variance were used to explore data. RESULTS: Of the 192 RMD patients who completed PHQ-9, 35 (18.2%) were not depressed, 68 (35.4%) had subclinical or mild depression, 42 (21.9%) had moderate depression, 30 (15.6%) had moderately severe depression, and 17 (8.9%) had severe depression. Contrary to the above findings, only 16 respondents (8.3%) reported that they experienced depressive symptoms, and only 7 of the 16 were being followed by a psychiatrist. Respondents with higher PHQ-9 scores tended to have concomitant fibromyalgia, to be younger, and to be overweight. CONCLUSIONS: The current results indicate the overall burden of depressive symptoms in RMD patients. While clinical depression (PHQ-9 >10) was detected in 41.2% of respondents, only 8.3% reported that they experience depressive symptoms. Routine screening of RMD patients for depression is therefore critical.

COVID-19 related poor mental health and sleep disorders in rheumatic patients: a citizen science project.

BACKGROUND: Patients with chronic rheumatic diseases (RDs) are more vulnerable and the containment measures related to the COVID-19 pandemic might have severe psychological consequences. We investigated the presence of and risk factors associated with poor mental health, sleep disorders among RDs during the pandemic. METHODS: This cross-sectional Italian citizen science project evaluated the psychological impact of the COVID-19 pandemic in patients with RDs. Between May and September 2020, eleven RD patients' associations sent the survey by using their mailing list and the related webpage and social network. 507 RD patients completed an ad-hoc anonymous online survey including the Perceived Stress Scale (PSS) and Impact Event Scale-Revised (IES-R). RESULTS: The mean scores on the PSS-10 and the IES-R were 18.1 and 29.7, respectively. Higher PSS scores were associated with younger age (p <  0.01), female gender (p <  0.01), overweight/obesity (p = 0.01), psychiatric pharmacotherapy (p <  0.01), and anxiety for loss of income (p <  0.01). Higher IES-R scores were associated with female gender (p <  0.01), intestinal diseases (p = 0.03), anxiety (p <  0.01), and health concern (p <  0.01). Among 375 patients with inflammatory arthritis, 246 (65.6%) had trouble staying asleep, 238 (63.5%) falling asleep, and 112 (29.9%) had dreams about the pandemic. Older age (OR = 1.038, CI 1.002-1.076), psychiatric pharmacotherapy (OR = 25.819, CI 11.465-58.143), and COVID infection (OR = 2.783, CI 1.215-6.372) were predictive of insomnia during the pandemic. CONCLUSIONS: A considerable COVID-19 related psychosocial burden has been detected in RDs. Different factors were predictive of poor mental health and sleep disorders in these patients. Focused supportive strategies should be implemented to improve the psychological well-being of fragile patients during pandemics.

Relevant non-pharmacologic topics for clinical research in rheumatic musculoskeletal diseases: The patient perspective.

OBJECTIVE: The research approach on rheumatic musculoskeletal diseases (RMDs) is challenging and patient involvement is an emerging issue to obtain relevant information to research. Despite growing interest in non-pharmacologic aspects of clinical research in RMDs, the patients' perspectives are currently poorly explored. METHODS: A cross-sectional no-profit online survey was devised to identify and rank the priorities for clinical research in RMDs according to patients' perspectives. Patients were asked to rate the following topics: food/nutrition, air pollution, smoking, work activity, social participation, physical activity, emotional well-being/stress, alternative medicine, and patient-physician relationship. The survey was disseminated by ALOMAR (Lombard Association for Rheumatic Diseases) between June and October 2019. RESULTS: Two hundred RMD patients completed the survey. The topic most rated 188 (94%) was the doctor-patient relationship, considered very or extremely important. Other topics rated as follows: psychological well-being 185 (92.5%), physical activity 155 (77.5%), nutrition, eating habits 150 (75%), alternative therapies 144 (72%), work activity 144 (72%), environmental pollution 134 (67%), social life 121 (60.5%) and cigarette smoke 119 (59.5%). The topics considered relevant were perceived to be able to influence disease symptoms. Environmental pollution and smoking were considered the most important for RMD prevention in 43.3% and 48.7% respectively. CONCLUSIONS: This survey highlights the relevance of several unmet needs and indicates that active patient involvement is essential to design successful translational studies and improve clinical outcomes.

Fertilizing a Patient Engagement Ecosystem to Innovate Healthcare: Toward the First Italian Consensus Conference on Patient Engagement.

Currently we observe a gap between theory and practices of patient engagement. If both scholars and health practitioners do agree on the urgency to realize patient engagement, no shared guidelines exist so far to orient clinical practice. Despite a supportive policy context, progress to achieve greater patient engagement is patchy and slow and often concentrated at the level of policy regulation without dialoguing with practitioners from the clinical field as well as patients and families. Though individual clinicians, care teams and health organizations may be interested and deeply committed to engage patients and family members in the medical course, they may lack clarity about how to achieve this goal. This contributes to a wide "system" inertia-really difficult to be overcome-and put at risk any form of innovation in this filed. As a result, patient engagement risk today to be a buzz words, rather than a real guidance for practice. To make the field clearer, we promoted an Italian Consensus Conference on Patient Engagement (ICCPE) in order to set the ground for drafting recommendations for the provision of effective patient engagement interventions. The ICCPE will conclude in June 2017. This document reports on the preliminary phases of this process. In the paper, we advise the importance of "fertilizing a patient engagement ecosystem": an oversimplifying approach to patient engagement promotion appears the result of a common illusion. Patient "disengagement" is a symptom that needs a more holistic and complex approach to solve its underlined causes. Preliminary principles to promote a patient engagement ecosystem are provided in the paper.