Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention: insights gained from the ACTION trial.

PURPOSE: Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations. METHODS: A mixed methods study involving content analysis and descriptive statistics was used to describe the content of completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention. RESULTS: In total, 33% of 442 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 10.4% (United Kingdom), 20.6% (Denmark), 29.2% (Belgium), 41.7% (the Netherlands), 61.3% (Italy) and 63.9% (Slovenia). Content analysis showed that 'maintaining normal life' and 'experiencing meaningful relationships' were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred 'home' as final place of care. CONCLUSIONS: My Preferences forms provide some insights into patients' perspectives and preferences. However, understanding the reasoning behind preferences requires conversations with patients.

Management of psychogenic non-epileptic seizures: a multidisciplinary approach.

The International League against Epilepsy (ILAE) proposed a diagnostic scheme for psychogenic non-epileptic seizure (PNES). The debate on ethical aspects of the diagnostic procedures is ongoing, the treatment is not standardized and management might differ according to age group. The objective was to reach an expert and stakeholder consensus on PNES management. A board comprising adult and child neurologists, neuropsychologists, psychiatrists, pharmacologists, experts in forensic medicine and bioethics as well as patients' representatives was formed. The board chose five main topics regarding PNES: diagnosis; ethical issues; psychiatric comorbidities; psychological treatment; and pharmacological treatment. After a systematic review of the literature, the board met in a consensus conference in Catanzaro (Italy). Further consultations using a model of Delphi panel were held. The global level of evidence for all topics was low. Even though most questions were formulated separately for children/adolescents and adults, no major age-related differences emerged. The board established that the approach to PNES diagnosis should comply with ILAE recommendations. Seizure induction was considered ethical, preferring the least invasive techniques. The board recommended looking carefully for mood disturbances, personality disorders and psychic trauma in persons with PNES and considering cognitive-behavioural therapy as a first-line psychological approach and pharmacological treatment to manage comorbid conditions, namely anxiety and depression. Psychogenic non-epileptic seizure management should be multidisciplinary. High-quality long-term studies are needed to standardize PNES management.

Red Flags for early referral of people with symptoms suggestive of narcolepsy: a report from a national multidisciplinary panel.

OBJECTIVE: Narcolepsy is a lifelong disease, manifesting with excessive daytime sleepiness and cataplexy, arising between childhood and young adulthood. The diagnosis is typically made after a long delay that burdens the disease severity. The aim of the project, promoted by the "Associazione Italiana Narcolettici e Ipersonni" is to develop Red Flags to detect symptoms for early referral, targeting non-sleep medicine specialists, general practitioners, and pediatricians. MATERIALS AND METHODS: A multidisciplinary panel, including patients, public institutions, and representatives of national scientific societies of specialties possibly involved in the diagnostic process of suspected narcolepsy, was convened. The project was accomplished in three phases. Phase 1: Sleep experts shaped clinical pictures of narcolepsy in pediatric and adult patients. On the basis of these pictures, Red Flags were drafted. Phase 2: Representatives of the scientific societies and patients filled in a form to identify barriers to the diagnosis of narcolepsy. Phase 3: The panel produced suggestions for the implementation of Red Flags. RESULTS: Red Flags were produced representing three clinical pictures of narcolepsy in pediatric patients ((1) usual sleep symptoms, (2) unusual sleep symptoms, (3) endocrinological signs) and two in adult patients ((1) usual sleep symptoms, (2) unusual sleep symptoms). Inadequate knowledge of symptoms at onset by medical doctors turned out to be the main reported barrier to diagnosis. CONCLUSIONS: This report will hopefully enhance knowledge and awareness of narcolepsy among non-specialists in sleep medicine in order to reduce the diagnostic delay that burdens patients in Italy. Similar initiatives could be promoted across Europe.

Difficulties and practices regarding information provision among Korean and Italian nurses.

AIM: To investigate nurses' opinions and practices of providing information in a global context through cultural comparison. BACKGROUND AND INTRODUCTION: Providing sufficient information to patients about nursing interventions and plans is essential for patient-centred care. While many countries have specific legislation making information delivery to patients a legal duty of nurses, no such legislation exists in both the Republic of Korea and Italy; nurses' only guidance is the deontological code. METHODS: This was a cross-sectional survey study involving a convenience sample of 174 Korean nurses and 121 Italian nurses working in internal medicine and surgery at university hospitals. Data were collected using a self-administered questionnaire between February and November 2014. The questionnaire assessed demographic and professional characteristics, and difficulties and practices regarding information provision. RESULTS: Korean and Italian nurses significantly differed in all demographic and professional characteristics. More Korean than Italian participants reported that their role in providing information was well explained within their teams, but both groups reported the same level and type of difficulties in delivering information. Nurses in both countries regularly informed patients about medications and nursing procedures, but provided information about nursing care plans less frequently. Few nurses frequently provided information to relatives instead of patients. CONCLUSIONS: Despite cultural, demographic and professional differences between Korean and Italian nurses, their difficulties and practices in information delivery to patient were similar. IMPLICATIONS FOR NURSING AND HEALTH POLICY: Hospital managers and policymakers should be aware that nurse-patient communication can be impaired by organizational factors, patient characteristics or the interaction among providers. Educational interventions and strategies are needed to increase information provision to patients about nursing care plans.

[Fatigue-related risk: what are the consequences for professionals and health-care organizations?]. / Rischio fatigue-related quali ricadute per i professionisti e le organizzazioni sanitarie?

Many studies have investigated the influence of fatigue on healthcare professionals' safety and clinical performances, showing associations between prolonged work shifts, sleep deprivation and both injuries and errors. Even in the absence of conclusive evidence, after the death of a girl under the care of two fatigued residents, New York State promulgated in 1989 rules to cap residents' duty hours, afterwards adopted by the Accrediting Council for Graduate Medical Education. Italian data on fatigue-related medical errors are still lacking, and no legal cases have raised public awareness of this topic. The authors explored medical-legal issues potentially arising from cases of fatigue-related errors, and proposed two interventions from a risk management perspective: 1. review of events reported through the incident reporting system in which at least one contributing factor was fatigue-related, and 2: root cause analysis of events and accidents reported during night shifts.

[Guidelines for the fitness to drive assessment in people with obstructive sleep apnoea syndrome (OSAS) and narcolepsy]. / Linee guida per l'accertamento dell'idoneità alla guid in soggetti affetti da Sindrome delle apnee ostruttive del sonno (OSAS) e Narcolessia.

Given the prevalence of sleep disorders and sleep deprivation in modern societies, and the correlation between sleepiness and work and driving accidents, the excessive daytime sleepiness is an important issue. Although many studies showed that patients with untreated Obstructive sleep apnoea syndrome (OSAS) and narcolepsy have an higher risk for driving accidents, neither the European Community regulation nor the Italian law of the driving licence mention restrictions for these disorders. In 2010 the scientific association COMLAS (Association of legal medicine professionals of the Italian National Health Service) published the Guidelines for the examination by the Local Medical Commissions. The author presented the guidelines to assess the fitness to drive of people with OSAS or narcolepsy. The proposed criteria, set up in collaboration with the Commission "Sleepiness, Safety and Transportation" of the Italian Association of Sleep Medicine (AIMS), can be considered among the most advanced internationally.