Sex disparities in clinical features and burden of narcolepsy type 1.

To investigate potential sex-related differences in patients with narcolepsy type 1, we carried out an analysis of baseline data from 93 women and 89 men with narcolepsy type 1 who participated in the TElemedicine for NARcolepsy (TENAR) trial. The following data were considered: sociodemographics; diagnostic (disease history, polysomnography, orexin, human leukocyte antigen) and clinical features, including sleepiness (Epworth Sleepiness Scale), cataplexy and other narcolepsy symptoms; disease severity (Narcolepsy Severity Scale); pharmacological treatment; depressive symptoms (Beck Depression Inventory); and self-reported relevance of eight narcolepsy-related issues. We found that, compared with men, significantly more women reported automatic behaviours (55.4% versus 40%) and had higher Epworth Sleepiness Scale (median 10 versus 9) and Beck Depression Inventory scores (median 10.5 versus 5), and there was a trend for a higher Narcolepsy Severity Scale total score in women (median 19 versus 18, p = 0.057). More women than men were officially recognized as having a disability (38% versus 22.5%) and considered 5/8 narcolepsy-related issues investigated as a relevant problem. More severe sleepiness and a greater narcolepsy-related burden in women could mirror sex differences present in the general population, or may be related to suboptimal management of narcolepsy type 1 or to more severe depressive symptoms in women. Future studies and guidelines should address these aspects.

Work productivity and activity impairment in patients with narcolepsy type 1.

The aim of this study was to assess work productivity and activity impairments and to explore their association with excessive daytime sleepiness, body mass index (BMI), depression, and anxiety in patients with narcolepsy type 1. We carried out a cross-sectional study in which patients with narcolepsy type 1 and matched controls for sex, age, and education were assessed for occupational features, EDS (Epworth Sleepiness Scale), BMI, depression (Beck Depression Inventory), anxiety (State-Trait Anxiety Inventory), and Work Productivity and Activity Impairment (WPAI). Different statistical approaches were used to investigate differences between groups and correlations between WPAI scores and clinical features. The 127 patients with narcolepsy type 1 (mean age 38.2 ± 15.5, 91.3% taking drugs for narcolepsy) and 131 controls (mean age of 37.4 ± 14.3) included did not differ in terms of occupational features, except for hours worked/week (29.9 in patients vs. 34.9 in controls) and officially recognised disability (30.7% vs. 5.3%). Impairment in all WPAI scores was approximately three times greater in patients. Narcolepsy was associated with work time missed in 27.4% of patients, while 93.2% to 95.5% of them had some impairment while working or during daily activities (vs. 37.5-46.8% of controls). Correlations with WPAI scores were found for excessive daytime sleepiness only in patients, and for both depression and anxiety in patients and controls, with a stronger correlation for activity impairment in patients. These results suggest that, despite treatment, narcolepsy type 1 was associated with extensive impairment especially regarding job effectiveness and daily activities. Future studies should investigate risk factors and effects of interventions on these outcomes.

Ethical Aspects of Prodromal Synucleinopathy Prognostic Counseling.

Alpha-synucleinopathies can be identified in their prodromal phase, raising several ethical issues. In this review, we first provide definitions of prodromal α-synucleinopathies and discuss the importance of distinguishing between prodromes and risk factors. Next, we discuss the implications of a diagnosis of prodromal α-synucleinopathy and considerations regarding prognostic counseling in both clinical and research settings. We review available data on patient preferences regarding disclosure as well as providers' perspectives. We examine the pros and cons of disclosing a diagnosis of prodromal α-synucleinopathy, taking into consideration the differences between clinical and research settings. Asking about willingness to know in clinical and research settings and the shared decision-making process applied to prognostic counseling is discussed. Concerning research settings, ethical aspects regarding clinical trials are addressed. Availability of direct-to-consumer technologies will likely lead to novel contexts requiring prognostic counseling, and future neuroprotective or neuromodulating treatments may require further considerations on the timing, role, and importance of prognostic counseling. Recommendations on how to address ethical gaps should be a priority for patients, medical professional societies, and research workgroups. Ethical issues must be considered as an integral part of the overall clinical and research approach to prodromal synucleinopathies.

Applicability and usefulness of the Declaration of Helsinki for forensic research with human cadavers and remains.

Bodies of deceased persons and human remains and their specimens (i.e., organs, bones, tissues, or biological samples) are essential in forensic research but ad hoc worldwide-recognized ethical standards for their use are still lacking. Such standards are needed both to avoid possible unethical practices and to sustain research in the forensic field. Pending consensus within the forensic science community regarding this topic, with this article we aim to stimulate a debate as to the applicability and usefulness of the Declaration of Helsinki in the field of forensic research involving human cadavers and remains. Considering the fundamental differences compared to clinical research involving human beings and the different moral obligations involved, we focus on the risks, burdens, and benefits of research, ethics committee approval, and informed consent requirements. The Declaration of Helsinki framework allows forensic researchers to focus on substantial ethical principles promoting the consistency, integrity, and quality of research. Consensus regarding ethical standards and the adoption of national and supranational laws that clearly regulate the use of human cadavers and remains, including those from autopsies, continues to be of primary importance for the forensic science community.

Predictive risk factors of phenoconversion in idiopathic REM sleep behavior disorder: the Italian study "FARPRESTO".

Most patients with idiopathic REM sleep behavior disorder (iRBD) will develop an overt α-synucleinopathy over time, with a rate of phenoconversion of 73.5% after 12 years from diagnosis. Several markers of phenoconversion were identified; however, most studies investigated biomarkers separately, with retrospective study designs, in small cohorts or without standardized data collection methods. The risk FActoRs PREdictive of phenoconversion in idiopathic REM sleep behavior disorder: the Italian STudy (FARPRESTO) is a multicentric longitudinal retrospective and prospective study with a cohort of incident (prospective recruitment) and prevalent (retrospective recruitment) iRBD patients, whose primary aim is to stratify the risk of phenoconversion, through the systematic collection by means of electronic case report forms of different biomarkers. Secondary aims are to (1) describe the sociodemographic and clinical characteristics of patients with iRBD; (2) collect longitudinal data about the development of α-synucleinopathies; (3) monitor the impact of iRBD on quality of life and sleep quality; (4) assess the correlation between phenoconversion, cognitive performance, and loss of normal muscle atony during REM sleep; (5) identify RBD phenotypes through evaluating clinical, biological, neurophysiological, neuropsychological, and imaging biomarkers; and (6) validate vPSG criteria for RBD diagnosis. The FARPRESTO study will collect a large and harmonized dataset, assessing the role of different biomarkers providing a unique opportunity for a holistic, multidimensional, and personalized approach to iRBD, with several possible application and impact at different levels, from basic to clinical research, and from prevention to management. The FARPRESTO has been registered at clinicaltrials.gov (NCT05262543).

Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial.

BACKGROUND: Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce. METHODS AND FINDINGS: To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0-3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients' age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients' quality of life did not differ between intervention and control groups (T-score -1.8 versus -0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals. CONCLUSIONS: Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed. TRIAL REGISTRATION: ISRCTN registry ISRCTN63110516.

Medico-legal assessment of personal damage in older people: report from a multidisciplinary consensus conference.

Ageing of the global population represents a challenge for national healthcare systems and healthcare professionals, including medico-legal experts, who assess personal damage in an increasing number of older people. Personal damage evaluation in older people is complex, and the scarcity of evidence is hindering the development of formal guidelines on the subject. The main objectives of the first multidisciplinary Consensus Conference on Medico-Legal Assessment of Personal Damage in Older People were to increase knowledge on the subject and establish standard procedures in this field. The conference, organized according to the guidelines issued by the Italian National Institute of Health (ISS), was held in Bologna (Italy) on June 8, 2019 with the support of national scientific societies, professional organizations, and stakeholders. The Scientific Technical Committee prepared 16 questions on 4 thematic areas: (1) differences in injury outcomes in older people compared to younger people and their relevance in personal damage assessment; (2) pre-existing status reconstruction and evaluation; (3) medico-legal examination procedures; (4) multidimensional assessment and scales. The Scientific Secretariat reviewed relevant literature and documents, rated their quality, and summarized evidence. During conference plenary public sessions, 4 pairs of experts reported on each thematic area. After the last session, a multidisciplinary Jury Panel (15 members) drafted the consensus statements. The present report describes Conference methods and results, including a summary of evidence supporting each statement, and areas requiring further investigation. The methodological recommendations issued during the Conference may be useful in several contexts of damage assessment, or to other medico-legal evaluation fields.

Protocols of a diagnostic study and a randomized controlled non-inferiority trial comparing televisits vs standard in-person outpatient visits for narcolepsy diagnosis and care: TElemedicine for NARcolepsy (TENAR).

BACKGROUND: Narcolepsy is a rare chronic sleep disorder that typically begins in youth. Excessive daytime sleepiness is the main disabling symptom, but the disease is often associated with severe endocrine-metabolic and psychosocial issues, worsened by a long diagnostic delay, requiring a multidisciplinary approach. The scarcity of reference Sleep Centres forces the patient and family to travel for seeking medical consultations, increasing the economic and psychosocial burden of the disease. Growing evidence suggests that Telemedicine may facilitate patient access to sleep consultations and its non-inferiority in terms of patient satisfaction, adherence to treatment, and symptom improvement for sleep disorders. However, Telemedicine clinical and economic benefits for patients with narcolepsy are still unknown. METHODS: TENAR is a two-part project, including: 1. a cross-sectional study (involving 250 children and adults with suspected narcolepsy) evaluating the accuracy of Teletriage (i.e., a synchronous live interactive sleep assessment through a Televisit) for narcolepsy diagnosis compared to the reference standard; and 2. a two-arm, parallel, open randomized controlled trial (RCT) to demonstrate the non-inferiority of the multidisciplinary care of narcolepsy through Televisits versus standard care. In this RCT, 202 adolescents (> 14 y.o.) and adults with narcolepsy will be randomly allocated (1:1 ratio) either to Televisits via videoconference or to standard in-person outpatient follow-up visits (control arm). The primary outcome is sleepiness control (according to the Epworth Sleepiness Scale). Secondary outcomes are other symptoms control, compliance with treatment, metabolic control, quality of life, feasibility, patient and family satisfaction with care, safety, and disease-related costs. At baseline and at 12 months, patients will undergo neurologic, metabolic, and psychosocial assessments and we will measure primary and secondary outcomes. Primary outcomes will be also measured at 6 months (remotely or in person, according to the arm). DISCUSSION: TENAR project will assess, for the first time, the feasibility, accuracy, efficacy and safety of Telemedicine procedures applied to the diagnosis and the multidisciplinary care of children and adults with narcolepsy. The study may be a model for the remote management of other rare disorders, offering care access for patients living in areas lacking medical centres with specific expertise. TRIAL REGISTRATION: Number of the Tele-multidisciplinary care study NCT04316286. Registered 20 March 2020.

Ethical and research governance approval across Europe: Experiences from three European palliative care studies.

BACKGROUND: Research requires high-quality ethical and governance scrutiny and approval. However, when research is conducted across different countries, this can cause challenges due to the differing ethico-legal framework requirements of ethical boards. There is no specific guidance for research which does not involve non-medicinal products. AIM: To describe and address differences in ethical and research governance procedures applied by research ethics committees for non-pharmaceutical palliative care studies including adult participants in collaborative European studies. DESIGN: An online survey analysed using descriptive statistics. SETTING/PARTICIPANTS: Eighteen principal investigators in 11 countries conducting one of three European-funded studies. RESULTS: There was variation in practice including whether ethical approval was required. The time to gain full approvals differed with the United Kingdom having governance procedures that took the longest time. Written consent was not required in all countries nor were data safety monitoring committees for trials. There were additional differences in relation to other data management issues. CONCLUSION: Researchers need to take the differences in research approval procedures into account when planning studies. Future research is needed to establish European-wide recommendations for policy and practice that dovetail ethical procedures and enhance transnational research collaborations.

Discussions about palliative sedation in hospice: Frequency, timing and factors associated with patient involvement.

OBJECTIVE: To investigate whether and when palliative sedation was discussed with hospice patients with cancer and/or with their families and factors associated with patient involvement in such discussions. METHODS: Medical records of all patients with cancer who died in an Italian hospice in 2014-2015 (N = 326) were retrospectively reviewed. Multiple logistic regression was used to assess the association between patients' characteristics and palliative sedation discussion with the patient versus palliative sedation discussion only with the family. RESULTS: Palliative sedation discussion was in 51.8% of the cases reported in the record. In most of the cases, discussions were conducted pre-emptively. Palliative sedation was used for 67.3% of the patients who were involved in the discussion and for 32.7% of the patients when the topic was discussed only with the family. Patient involvement in palliative sedation discussions was negatively associated with living with others (OR 0.34, CI 0.15; 0.77), and positively associated with awareness of prognosis (OR 5.61, CI 2.19; 14.33) and days of survival after hospice admission (OR 3.41, CI 1.55; 7.51). CONCLUSION: Policies encouraging patient involvement in palliative care decision-making, including palliative sedation, should be implemented and their adoption should be carefully examined. Prospective studies addressing this topic are needed.

Nursing home staff members' knowledge, experience and attitudes regarding advance care planning: a cross-sectional study involving 12 Italian nursing homes.

BACKGROUND: Advance care planning may be beneficial for nursing home residents, but its implementation is suboptimal in several countries. AIMS: To investigate knowledge of, attitudes towards, and experience with advance care planning of nursing home staff members in Italy. METHODS: Cross-sectional survey involving all healthcare professionals working in 12 Italian nursing homes. Statistical analyses investigated interactions between participants' characteristics, knowledge, attitudes and frequency of advance care planning discussion with residents. RESULTS: Of the 185 participants (80.5% female, mean age 43.6 ± 9.2 years), 29.7% reported that they had heard of advance care planning, but their actual knowledge was suboptimal. Participants had positive attitudes towards advance care planning, and most of them clearly recognized its benefits. Apprehension about upsetting the patient or their family, or that patients were not ready for these conversations were the main concerns. Only 16% of respondents discussed advance care planning at least sometimes, usually upon patient/family input. Greater knowledge was significantly correlated with more positive attitudes towards advance care planning. The issues of healthcare professionals' knowledge and training in advance care planning, and of knowledge and awareness of advance care planning in patients, their families, and the general population were considered either main barriers or facilitators. DISCUSSION: Nursing home staff members' concerns towards advance care planning seemed to be related to a misconception about patient and family willingness to discuss it. CONCLUSIONS: A multifaceted strategy including educational and training programmes and the increase of public awareness is needed to implement advance care planning in Italian nursing homes.

Discussing advance care planning: insights from older people living in nursing homes and from family members.

ABSTRACTBackground:Evidence concerning when and in which manner older people living in nursing homes (NHs) would prefer to discuss advance care planning (ACP) is still scarce. This study explored the attitudes of NH residents and family members toward ACP and their opinions as to the right time to broach the subject, the manner in which it should be approached, and the content of ACP. METHODS: This was a qualitative study using face-to-face interviews with 30 residents (age range 66-94), and 10 family members from 4 Italian NHs. The interviews were analyzed using content analysis. RESULTS: Three main themes were identified: (1) life in the NH, including thoughts about life in a nursing home, residents' concerns, wishes and fears, and communication barriers; (2) future plans and attitudes toward ACP, including attitudes toward planning for the future and plans already made, and attitudes toward and barriers against ACP; (3) contents and manner of ACP, including contents of ACP discussions, the right moment to introduce ACP, with whom it is better to discuss ACP, and attitudes toward advance directives. CONCLUSIONS: ACP was a welcome intervention for the majority of participants, but an individualized assessment of the person's readiness to be involved in ACP is needed. For people with dementia, it is essential to identify the right time to introduce ACP before NH admission. Participants in our study suggested that ACP should include palliative care and practical issues, and that in the NH setting all staff and family members may have a valuable role in ACP.

Firing a loaded gun during sleep in an elderly man with a "perfect storm" of risk factors including severe obstructive sleep apnea.

PURPOSE: We report a case of firing a loaded gun during sleep in a geriatric patient with undiagnosed major sleep disorders and multiple risk factors for sleep violence. Polysomnographic findings, diagnostic challenges, and forensic implications in this unprecedented geriatric case are discussed. METHODS: A 75-year-old employed man, married for 32 years, presented to a sleep center reporting to having fired a shot in his bedroom during sleep while his wife was away, without memory of hearing the gunshot. The day before the event, the patient had a normal life, apart from serious worries about recent nearby burglaries that prompted his sleeping with a loaded gun placed behind his bed. The patient underwent a sleep medicine workup, including nocturnal video polysomnography (vPSG). RESULTS: The patient and his wife were unaware of any sleep problems. Upon careful questioning, only mild daytime sleepiness and rare episodes of minor abnormal motor behavior were reported. At vPSG, sleep structure was markedly disrupted with only one clear sleep cycle with REM sleep that had preserved REM-atonia; severe obstructive sleep apnea and moderately severe periodic limb movement activity were documented. Brief abnormal movements from REM sleep without apparent precipitant were recorded. CPAP therapy was effective. CONCLUSIONS: In this case, there was a "perfect storm" of sleep and psychological risk factors that converged to strongly promote precipitous arousals with sleep-related violence in a patient with documented sleep motor dyscontrol. Primary care physicians, including geriatric specialists, should question patients and their spouses about any symptoms of sleep disorders.

Advance care planning--a multi-centre cluster randomised clinical trial: the research protocol of the ACTION study.

BACKGROUND: Awareness of preferences regarding medical care should be a central component of the care of patients with advanced cancer. Open communication can facilitate this but can occur in an ad hoc or variable manner. Advance care planning (ACP) is a formalized process of communication between patients, relatives and professional caregivers about patients' values and care preferences. It raises awareness of the need to anticipate possible future deterioration of health. ACP has the potential to improve current and future healthcare decision-making, provide patients with a sense of control, and improve their quality of life. METHODS/DESIGN: We will study the effects of the ACP program Respecting Choices on the quality of life of patients with advanced lung or colorectal cancer. In a phase III multicenter cluster randomised controlled trial, 22 hospitals in 6 countries will be randomised. In the intervention sites, patients will be offered interviews with a trained facilitator. In the control sites, patients will receive care as usual. In total, 1360 patients will be included. All participating patients will be asked to complete questionnaires at inclusion, and again after 2.5 and 4.5 months. If a patient dies within a year after inclusion, a relative will be asked to complete a questionnaire on end-of-life care. Use of medical care will be assessed by checking medical files. The primary endpoint is patients' quality of life at 2.5 months post-inclusion. Secondary endpoints are the extent to which care as received is aligned with patients' preferences, patients' evaluation of decision-making processes, quality of end-of-life care and cost-effectiveness of the intervention. A complementary qualitative study will be carried out to explore the lived experience of engagement with the Respecting Choices program from the perspectives of patients, their Personal Representatives, healthcare providers and facilitators. DISCUSSION: Transferring the concept of ACP from care of the elderly to patients with advanced cancer, who on average are younger and retain their mental capacity for a larger part of their disease trajectory, is an important next step in an era of increased focus on patient centered healthcare and shared decision-making. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Number: ISRCTN63110516. Date of registration: 10/3/2014.

Elder abuse awareness in Italy: analysis of reports to the Prosecutor Office of Bologna.

BACKGROUND: In Italy, the prevalence of elder abuse is estimated from 10 to 12.7 %. Even if the elderly are not specifically protected by the Italian Penal Code, it contains several articles punishing crimes against disadvantaged groups in which elders may be included. Article 572 about mistreatment of family members or cohabitants, and article 643 about circumvention of incapable best fit elder abuse or neglect and financial fraud and exploitation, respectively. AIMS: To evaluate the prevalence of reported elder abuse in Bologna and province (Italy) compared to available data on prevalence obtained by population-based surveys. METHODS: Reports to the Prosecutor Office about articles 572 and 643 in the period from 2000 to 2013 were collected and analyzed according to victim's age at the report time. RESULTS: For article 572 a total of 3,713 reports were found. The prevalence of reports ranged from 0.005 to 0.024 % for victims older than 65 years. Concerning article 643 a total of 786 reports were detected, with a prevalence ranging from 0.007 to 0.016 % for victims older than 65 years. DISCUSSION AND CONCLUSION: A large gap was found between reported crimes related to elder abuse and the estimated prevalence of elder abuse in Italy. Our results showed that in Italy efforts to improve strategic approach on elder abuse as well as research at various levels following the examples of other abusive situations are needed in both health and legal systems.

Clinical and polysomnographic course of childhood narcolepsy with cataplexy.

Our aim was to investigate the natural evolution of cataplexy and polysomnographic features in untreated children with narcolepsy with cataplexy. To this end, clinical, polysomnographic, and cataplexy-video assessments were performed at diagnosis (mean age of 10 ± 3 and disease duration of 1 ± 1 years) and after a median follow-up of 3 years from symptom onset (mean age of 12 ± 4 years) in 21 children with narcolepsy with cataplexy and hypocretin 1 deficiency (tested in 19 subjects). Video assessment was also performed in two control groups matched for age and sex at first evaluation and follow-up and was blindly scored for presence of hypotonic (negative) and active movements. Patients' data at diagnosis and at follow-up were contrasted, compared with controls, and related with age and disease duration. At diagnosis children with narcolepsy with cataplexy showed an increase of sleep time during the 24 h; at follow-up sleep time and nocturnal sleep latency shortened, in the absence of other polysomnographic or clinical (including body mass index) changes. Hypotonic phenomena and selected facial movements decreased over time and, tested against disease duration and age, appeared as age-dependent. At onset, childhood narcolepsy with cataplexy is characterized by an abrupt increase of total sleep over the 24 h, generalized hypotonia and motor overactivity. With time, the picture of cataplexy evolves into classic presentation (i.e., brief muscle weakness episodes triggered by emotions), whereas total sleep time across the 24 h decreases, returning to more age-appropriate levels.

Factors associated with nurses' opinions and practices regarding information and consent.

This cross-sectional survey aimed to investigate nurses' opinions and practices regarding information and consent in the context of a large Italian teaching hospital and to explore potential influences of gender, age, university education, length of professional experience, and care setting. A questionnaire was administered to 282 nurses from six different care settings (Emergency Room, Emergency Medicine, Surgery, Hematology-Oncology, Geriatrics, and Internal Medicine). Overall, 84% (n = 237) of nurses returned the questionnaire (men: 24%; mean age: 36.2 ± 8 years; university degree: 35%; mean length of professional experience: 12 ± 8.2 years). Most respondents regularly informed patients about medications and nursing procedures and asked for consent prior to invasive procedures, but some provided information to relatives instead of patients. Lack of time or opportunity was the main difficulty in informing patients. The work setting was the foremost factor significantly associated with participants' opinions and practices. Further investigations are needed to confirm these findings in similar and other care settings.

Disclosing the Risk Associated with Isolated REM Behavior Disorder: The Sleep Experts' Perspective.

BACKGROUND: Isolated rapid-eye-movement sleep behavior disorder (iRBD) is associated with a high risk for phenoconversion to a neurodegenerative disorder, but the optimal approach for disclosure of this risk to patients is still debated. OBJECTIVES: The aim of this study was to explore views and experiences of iRBD experts regarding risk disclosure. METHODS: In this qualitative study, semi-structured interviews with sleep experts caring for patients with iRBD were analyzed through a conventional content analysis approach. RESULTS: We interviewed 22 iRBD experts (eight female, average age of 51.8 years) from 18 Italian sleep centers; 21/22 regularly disclosed the risks associated with iRBD, usually after the video-polysomnography, and 8/22 regularly mentioned phenoconversion rates. Content analysis allowed us to identify three main themes. First, sleep experts reported several points in favor of risk disclosure, especially related to the principle of beneficence, but some highlighted the need for specific learning on the topic. Second, experts favored a patient-tailored disclosure that should not upset the patient unnecessarily, since phenoconversion is uncertain. Third, risk disclosure was seen by participants as a relational task that should be carried out in person in the context of a trusting patient-physician relationship, while they had contrasting views regarding patients' previous knowledge. CONCLUSIONS: Sleep experts generally preferred a tailored and reassuring approach to risk disclosure within a framework of relational autonomy. The results of this study indicate the need for specific education, training, and recommendations concerning risk disclosure that should also include patients' and families' preferences.