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We aimed to search and synthesize qualitative studies exploring the perspectives of older people living in long-term care facilities and of their family members about advance care planning (ACP) discussions. The enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) framework was used to guide the review and report its results. PubMed, CINAHL, and PsycINFO were searched for studies published between January 2000 and November 2015. All included studies were assessed for comprehensiveness of reporting, and a thematic synthesis of their results was performed. The nine included studies differed in terms of qualitative method used, comprehensiveness of reporting, and geographical origin. The thematic synthesis led to the identification of four main themes: 1) plans already made; 2) end-of-life care and decision-making; 3) opinions and attitudes toward ACP; and 4) how, when, about what, and with whom to do ACP. Despite their willingness to be involved in a shared decision-making process, older residents and their families still have little experience with ACP. In view of implementing ACP for elders living in long-term care facilities, it would be important to rethink ACP and also to incorporate their nonmedical preferences, according to their own priorities.

Narcolepsy type 1 (NT1) is a chronic neurological disorder characterized by symptoms such as excessive daytime sleepiness, sudden sleep episodes, disrupted nocturnal sleep, cataplexy, sleep paralysis, and hypnagogic hallucinations, which significantly impact the overall well-being and quality of life of individuals. While psychological factors have gained attention, there is limited research on the coping strategies employed by patients with NT1 and their association with quality of life. This study aimed to compare coping strategies in patients with NT1 and controls, as well as assess the relationship between coping strategies and quality of life in patients with NT1. A total of 122 individuals diagnosed with NT1 and 138 controls were enrolled in this cross-sectional study. Participants completed questionnaires assessing coping strategies and health-related quality of life. A Mann–Whitney U test was conducted to compare the use of different coping strategies by patients with NT1 and controls. Spearman's rho correlation was performed to examine the association between coping strategies and quality of life in the NT1 group. Results showed that patients with NT1 exhibited differences in the use of coping strategies compared to controls. They reported lower use of active coping, planning, instrumental, and emotional social support, and higher use of behavioral and mental disengagement. Denial and behavioral disengagement were significantly and negatively associated with quality of life. Identifying coping strategies and their association with quality of life may aid in the development of tailored interventions aimed at improving the adoption of effective coping strategies and reducing the use of maladaptive coping strategies.

Study Objectives: Narcolepsy type 1 (NT1) is a chronic neurological disorder typically arising during adolescence and young adulthood. Recent studies demonstrated that NT1 presents with age-specific features, especially in children. With this study we aimed to describe and to compare the clinical pictures of NT1 in different age groups. Methods: In this cross-sectional, multicenter study, 106 untreated patients with NT1 enrolled at the time of diagnosis underwent clinical evaluation, a semistructured interview (including the Epworth Sleepiness Scale), nocturnal video-polysomnography, and the Multiple Sleep Latency Test. Patients were enrolled in order to establish 5 age-balanced groups (childhood, adolescence, adulthood, middle age, and senior). Results: The Epworth Sleepiness Scale score showed a significant increase with age, while self-reported diurnal total sleep time was lower in older and young adults, with the latter also complaining of automatic behaviors in more than 90% of patients. Children reported the cataplexy attacks to be more frequent (> 1/d in 95% of patients). “Recalling an emotional event,” “meeting someone unexpectedly,” “stress,” and “anger” were more frequently reported in adult and older adult patients as possible triggers of cataplexy. Neurophysiological data showed a higher number of sleep-onset rapid eye movement periods on the Multiple Sleep Latency Test in adolescent compared to senior patients and an age-progressive decline in sleep efficiency. Conclusions: Daytime sleepiness, cataplexy features and triggers, and nocturnal sleep structure showed age-related difference in patients with NT1; this variability may contribute to diagnostic delay and misdiagnosis. Citation: Lividini A, Pizza F, Filardi M, et al. Narcolepsy type 1 features across the life span: age impact on clinical and polysomnographic phenotype. J Clin Sleep Med . 2021;17(7):1363–1370.

Background End-of-life (EoL) decisions represent some of the most ethically complex and emotionally charged aspects of healthcare. Understanding the attitudes of physicians, nurses, and the public toward EoL decisions is crucial for aligning care provided with the personal values and preferences of patients. Aim To explore the attitudes of physicians, nurses, and the general public toward EoL decisions, including the withdrawal or withholding of life-sustaining treatments, euthanasia, physician-assisted suicide (PAS), palliative sedation, and advance care planning (ACP) within European countries. Design An umbrella review was conducted, covering the period from January 2010 to June 2024. The search strategy included Medline, CINAHL, and PsycINFO, supplemented by manual searches of reference lists of all included studies to identify additional relevant studies. Results The search identified 587 papers, 11 of which were included in the synthesis. Of these, six addressed euthanasia and PAS, three focused on ACP, one on the withdrawal of life-sustaining treatments, and one on palliative sedation. In Europe, the general public expressed the highest level of support for EoL practices such as euthanasia and PAS, followed by nurses, while physicians often held a more cautious perspective. For withdrawal of treatment, palliative sedation, and ACP, a critical recurring theme was the need to improve communication between patients and healthcare professionals. Conclusions The divergence underscores the intricate complexity of navigating ethical, cultural, and professional considerations in EoL care. Effective communication serves as a cornerstone for respecting patient autonomy and ensuring that healthcare decisions align with individual values, goals and preferences.

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.

Study Objectives Narcolepsy type 1 (NT1) is a chronic rare hypersomnia of central origin requiring a combination of behavioral and pharmacological treatments. During the coronavirus disease 2019 (COVID‐19) pandemic, in Italy the population was forced into a lockdown. With this study, we aimed to describe the lockdown impact on NT1 symptom management, according to different patients' working schedule. Methods In the period between 10 April and 15 May 2020, we performed routine follow‐up visits by telephone (as recommended during the COVID‐19 emergency) to 50 patients >18 years old (40% males) under stable long‐term treatment. We divided patients into three groups: unchanged working schedule, forced working/studying at home, and those who lost their job (“lost occupation”). Current sleep–wake habit and symptom severity were compared with prelockdown assessment (six months before) in the three patient groups. Results At assessment, 20, 22, and eight patients belonged to the unchanged, working/studying at home, and lost occupation groups, respectively. While in the lost occupation group, there were no significant differences compared with prepandemic assessment, the patients with unchanged schedules reported more nocturnal awakenings, and NT1 patients working/studying at home showed an extension of nocturnal sleep time, more frequent daytime napping, improvement of daytime sleepiness, and a significant increase in their body mass index. Sleep‐related paralysis/hallucinations, automatic behaviors, cataplexy, and disturbed nocturnal sleep did not differ. Conclusions Narcolepsy type 1 patients working/studying at home intensified behavioral interventions (increased nocturnal sleep time and daytime napping) and ameliorated daytime sleepiness despite presenting with a slight, but significant, increase of weight. The graphical displays that NT1 patients working/studying at home slept more with improved subjective daytime sleepiness, while both NT1 patients working/studying at home and loosing occupation because of the pandemic significantly increased BMI.

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.

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.

Elder abuse appears to be widely underestimated by health professionals. We aimed to evaluate the recognition of elder abuse among Italian nurses and nursing students related to their professional, personal experiences and socio-demographic characteristics. 193 nursing students and 76 nurses attending a post-graduate nursing management master’s degree at the University of Bologna (Italy) completed the Caregiving Scenario Questionnaire measuring the ability to recognize elder abuse. Data on age, gender, previous professional and personal experiences as well as nursing school teaching were collected. Regarding abusive items, preventing elder’s movements by putting a table over the elder’s lap was identified by almost all participants, while locking someone at home was identified by half of them. Neglect was recognized by 25 % of nurses and 20 % of students, respectively. The majority of nurses and students correctly identified non-abusive strategies. Reporting being taught on elder abuse was inversely associated with a good performance in detecting neglect. Italian nurses’ and nursing students’ uncertainty in identifying abusive strategies, especially neglect, was consistent with results of previous studies in other countries. Standardized education in healthcare core curriculum, reference guidance and training are strongly needed to improve elder abuse recognition in Italy.