Long-acting drugs: people's expectations and physicians' preparedness. Are we readying to manage it? An Italian survey.

To evaluate patients' expectations regarding long-acting antiretroviral agents and preferences about where to receive them. Multicenter cross-sectional survey-based study. Through an online survey, we asked people living with human immunodeficiency virus to judge their relationship with daily antiretroviral therapy (ART) and to give their opinion about long-acting drugs. We also collected data regarding the age of the patients, their site of follow-up, time since the diagnosis, and compliance to ART. Two hundred forty-two patients aged 18 to 79 years were included in the study: 58 (24%) females, 182 (75.2%) males, and 2 (0.8%) male-to-female transgenders. 81.8% of the said population had a good relationship with ART. 33.6% of them consider daily ART an obligation and a restriction to their freedom. One hundred forty-three (59.1%) patients already knew about long-acting drugs before our interview, and 215 (88.8%) patients were interested in it. One hundred fifty-six (64.4%) interviewees said they would still be interested in hospital-available injective long-acting drugs, although 57.9% of the patients would rather receive them at home. The data emerging from our survey reveal that around 90% of the people living with HIV are interested in changing their actual treatment with a long-acting one. Moreover, for the first time to our knowledge, such a high number of patients showed an enthusiastic response to the new opportunity to be treated directly at home. The introduction of these new drugs could be revolutionary and represents an important step toward treatment simplification.

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.