OBJECTIVES:This White Paper by the European Association for Palliative Care addresses the imperative to integrate spiritual care into the support of individuals living with neuro-oncological and neurodegenerative conditions. These diseases present complex biomedical, social, psychological, and existential challenges that demand a whole-person approach to care. Various initiatives have progressed the understanding of spirituality as a dimension of well-being, yet the systemic delivery of spiritual care remains inconsistent and inequitable. METHODS:This study adopts a narrative umbrella review approach. We provide a synthesized framework highlighting current knowledge and models of care, educational needs, and future priorities for research, while advocating for the formal integration of spiritual care into all stages of illness. RESULTS:Our exploration highlights the importance of early integration of dynamic and multidimensional spiritual care for people with neuro-oncological or neurodegenerative diseases. The implementation of spiritual care in this context should address the unique challenges that arise with these diseases, such as changes in spiritual needs and in the ability to communicate spiritual needs across disease progression. Spiritual care should be carried out by the whole care team, offering regular spiritual screenings and referring care to specialists when needed, and it should be offered across all stages of care. Spiritual care should be culturally safe, offering multilingual access, and multi-faith chaplaincy services. SIGNIFICANCE OF RESULTS:Spiritual care is not a luxury or an optional extra; it is a fundamental aspect of palliative care. There is a need to implement spiritual care across all stages of care, taking into consideration the patient's evolving needs. Sufficient time should be allocated to spiritual care education for social and healthcare professionals. More research is needed to develop validated screening tools and effective interventions.

INTRODUCTION:Cachexia is a multifactorial syndrome prevalent in advanced illness. Guidelines rarely integrate the relational, multidimensional perspective of palliative care (PC). Addressing this gap is essential to optimize care. To achieve this, national consensus among PC physicians and nurses on principles and priorities for managing cachexia within PC settings is necessary. METHODS:A two-round Delphi study was conducted with 43 Italian PC experts (29 physicians, 14 nurses) meeting ⩾10 years' experience criteria. In Round 1, participants answered open-ended questions informed by literature and a prior exploratory study. Qualitative Framework Method analysis generated 28 statements. In Round 2, statements were rated on a 5-point Likert scale; consensus was defined as ⩾90% agreement (scores 4 or 5). RESULTS:Response rates were 82.2% (Round 1) and 95.5% (Round 2). High consensus (⩾90%) from both physicians and nurses was reached for 14 of 28 statements. Unanimous agreement (100%) supported the need for multiprofessional management, assessment of symptom clusters, and reframing the meaning of food in relation to illness stage. Strong agreement was found for dyadic care planning (97.7%), oral care (97.7%), and body image assessment (95.3%). Lower consensus occurred for prioritizing nutritional deficits (55.8%) and routine CRP/prealbumin testing (34.5%), reflecting contextual and prognostic considerations. CONCLUSIONS:This study defines core PC-oriented principles for cachexia management: interprofessional collaboration, dyadic engagement, early holistic assessment, and goal-concordant interventions. Findings can inform future clinical guidelines, training, and policy development to address cachexia in advanced illness.

Background The number of people living with long-term neurological conditions (PwLTNC) in Europe is on the rise and they experience a variety of complex symptoms, often requiring hospital admissions. This survey explored challenges healthcare professionals are encountering when providing care for PwLTNC.Methods A web-based survey was developed by the European Academy of Neurology (EAN) Scientific Panel on Palliative Care and disseminated by the EAN Scientific Department through the official mailing list, website and newsletter in the period 3 January 2024 to 27 February 2024. The United Nations' geoscheme for Europe was applied and differences between the North/West vs South/East/Greater European regions analysed.Results A total of 153 EAN members (50% women, mean age 48 years) were participated. They expressed their dissatisfaction with the availability of long-term healthcare, including palliative care (60%), psychosocial (67%) and spiritual support (60%) offered to PwLTNC, their families and carers, the resources to provide healthcare for PwLTNC in medical emergencies and knowledge of acute medical staff about PwLTNC (45%). Dissatisfaction with the availability of resources needed to provide healthcare for PwLTNC, the psychosocial support offered to PwLTNC and the extent of advance care planning implementation was more frequently reported in South/East/Greater Europe compared with North/West Europe.Conclusion This survey of the EAN members revealed dissatisfaction with long-term healthcare, including palliative care, offered to PwLTNC, their families and carers and pointed out healthcare disparities between the two European macroregions, with more critical figures in South/East/Greater Europe.

BACKGROUND:The ConCure-SM intervention [ISRCTN48527663] consists of an advance care planning (ACP) training program for neurologists/other professionals caring for people with progressive multiple sclerosis (PwPMS). We assessed the communication competences of ACP-trained neurologists who participated in the trial. METHODS:Eighteen ACP conversations were audio-recorded. After each conversation, participants (PwPMS, significant others [SOs], and neurologists) rated the neurologist's communication skills using dedicated versions of the Quality of Communication questionnaire (QOC). Independent observers assessed the conversations using the Observing Patient Involvement in Shared Decision Making (SDM; OPTION), and the Verona Coding Definitions of Emotional Sequences (VR-CoDES). RESULTS:Mean duration of the ACP conversations was 62.7 minutes. Neurologists (5/7 women) were 30-62-year-old. PwPMS mean age was 61.8 years, 39% were women. Mean QOC scores (distinguished in general communication and end-of-life communication; 0-100 scale) were 92.4, 90.1 respectively, according to PwPMS; 95.2, 94.3 according to SOs. Mean neurologists' self-reported QOC score (0-100 scale) was 69.5. Mean OPTION score (0-100 scale) was 48.4. PwPMS expressed a median of 8.5 cues (hints to emotion) and 3.0 concerns (explicit expressions of emotion) per conversation. Neurologists provided space to 59% of cues and 73% of concerns. A quarter of cues/concerns contained figurative expressions or metaphors to express concerns or as signals of emotional distress. Moreover, 12% of expressions were coded as positive emotional statements (i.e., expressions indicating hope, confidence, and positive wishes). CONCLUSIONS:Neurologists' communication skills during ACP conversations were rated as high using the QOC by both PwPMS and SOs, while neurologists rated their own skills more critically. Neurologists' SDM competences were moderate, but higher compared to two published studies on MS consultations. Qualitative and quantitative analysis of ACP conversation transcripts indicate that ACP can evoke many emotions. In most instances neurologists provided space for the PwPMS to elaborate on affective expressions. TRIAL REGISTRATION:ISRCTN48527663.

BackgroundAdvance care planning (ACP) practice in people with progressive multiple sclerosis (PwPMS) remains limited. ConCure-SM project aims to assess the effectiveness of a structured ACP intervention (clinician's training programme and use of a booklet during ACP conversations) using a multi-phased design.MethodsSingle-arm pilot/feasibility trial involving PwPMS, their significant others (SOs), and clinicians from six Italian centers. Primary study outcome was completion of an advance care plan document (ACP-Doc). Other outcomes included safety, feasibility of enrollment and assessment, and (analyzed using mixed-methods approach) Hospital Anxiety and Depression Scale (HADS), quality of communication, quality of life (MSQOL-29), and caregiver burden. Participants were interviewed to identify factors influencing the ACP implementation process.ResultsSeventy-five PwPMS were eligible out of 164 screened; 56/75 (75%) refused participation and 19 were included. Of these, 11 (58% vs 30% hypothesized) completed the ACP-Doc. A total of 25 adverse events (increase in anxiety) occurred, three possibly related to the intervention, and we found a worsening of HADS-Anxiety score (p = 0.02) and MSQOL-29 mental health composite score (p = 0.04) during follow-up. PwPMS/SO interviews revealed four themes: significance of the ACP process (on the individual, on relation with clinicians), its impact (on emotions, on family relations), preparedness as key, and challenges (practicability, SO commitment). Barriers and facilitators for ACP were identified in two clinician focus groups.ConclusionsThe intervention supported neurologists in guiding PwPMS in their ACP. However, trial findings and the high proportion of refusals point to the need to enrich the intervention with a new component targeting PwPMS and SOs.Trial registrationISRCTN48527663.

Integrated Palliative care Outcome Scale (IPOS) is a specific tool for assessing needs in palliative care, recording and monitoring physical symptoms, emotional concerns, and communication and practical issues. This study aimed to evaluate if the IPOS tool was able to assess the impact of at-home palliative care program on physical symptoms and psychosocial problems in advanced cancer patients. This observational prospective longitudinal mixed-method study included advanced cancer patients assisted at home. IPOS questionnaire (patient version—7-day recall) was administered at the entry, after 2 and 4 weeks. A qualitative thematic analysis (TA) of the first open-ended question was performed. Change over time in IPOS scores was analyzed by Friedman’s test for repeated measures. Among the 60 patients included (29 men, 31 women; 68.2 ± 14.0 years), 47 completed the 4-week observation period. TA indicated that the 3 main themes running through the three surveys (at the entry, day 14, and day 28) relate patients’ concerns about symptoms and side effects of treatments, family members, the evolution of the disease, and the daily issues. Repeated measures test demonstrated that patients entering with medium–high IPOS total score (n = 27) showed a significant decrease in IPOS total score (p = 0.003), physical symptoms (p = 0.002), and communication and practice (p = 0.028) subscales after 2 and 4 weeks. Patients entering in home care with higher burden of symptoms and psychosocial problems reported significant decrease in IPOS scores. In these patients, IPOS was responsive to change showing substantial clinical improvements after the activation of home assistance.

This paper aims to present insights into shared care planning (SCP) research activity in the Italian context. The suggestions presented in this paper are based on a multicentric and multiprofessional research project conducted with people with multiple sclerosis, the ConCure-SM pilot study. The manuscript, after outlining the project phases and characterizing elements, focuses on some aspects considered worthy of attention, specifically: barriers and facilitating elements in SCP research; tools to measure the impact of a SCP; training of health professionals on the topic; and time management in a SCP process.

BACKGROUND AND PURPOSE:Most neurological diseases have a chronic and progressive clinical course, with patients living for extended periods with complex healthcare needs. Evidence from other countries suggests that palliative care (PC) is insufficiently integrated in the care of these patients. This study aims to identify PC and advance care planning (ACP) knowledge and the perceived preparedness of Italian residents in neurology. METHODS:This is a cross-sectional online survey of physicians attending the 36 Italian neurology residency programmes. RESULTS:Of 854 residents, 188 (22%) participated. Their mean age was 28.4 ± 2.0 years; 49% were women; 45% were from the north, 23% from the centre and 32% from the south of Italy. Few residents (6%) reported that a teaching course in PC was part of the graduate programme, and 3% of the postgraduate programme. During their residency, 9% of participants received PC training, and 18% ACP training. Only 13% reported to have participated in the ACP process, half within their neurology residency programme. Residents considered PC support very/extremely important in all the pre-specified clinical situations, with values ranging between 78% and 96%. Over 70% of residents revealed education needs, particularly concerning ACP. CONCLUSIONS:Our data confirm the need for improving PC training in the graduate and postgraduate curriculum. This, together with collaboration and joint training of neurology and PC, is essential to improve the quality and continuity of care and respond to the complex needs of people with neurological disorders causing severe disability.

BACKGROUND:Delays and limitations of palliative care in patients with liver transplantation-ineligible end-stage hepatocellular carcinoma according to Barcelona Clinic Liver Cancer staging system may be explained by different perceptions between hepatologists and palliative care physicians in the absence of shared guidelines. AIM:To assess physicians' attitudes toward palliative care in end-stage hepatocellular carcinoma and to understand what the obstacles are to more effective management and co-shared between palliative care physicians and hepatologists. DESIGN:Members of the Italian Association for the Study of Liver Disease and the Italian Society of Palliative Care were invited to a web-based survey to investigate practical management attitude for patients with liver transplant-ineligible end-stage hepatocellular carcinoma. PARTICIPANTS:Physician members of the of the two associations, representing several hospitals and services in the country. RESULTS:Ninety-seven hepatologists and 70 palliative care physicians completed the survey: >80% regularly follow 1-19 patients; 58% of hepatologists collaborate with palliative care physicians in the management of patients, 55% of palliative care physicians take care of patients without the aid of hepatologists. Management of cirrhosis differed significantly between the two groups in terms of prescription of albumin, esophagogastroduodenoscopy, anti-viral treatment, anticoagulation, indication to paracentesis and management of encephalopathy. Full-dose acetaminophen is widely used among hepatologists, while opioids are commonly used by both categories, at full dosage, regardless of liver function. CONCLUSIONS:This survey highlights significant differences in the approach to patients with liver transplantation-ineligible end-stage hepatocellular carcinoma, reinforcing the need for shared guidelines and further studies on palliative care in the setting.

Introduction The collaboration between palliative care and neurology has developed over the last 25 years and this study aimed to ascertain the collaboration between the specialties across Europe. Methods This online survey aimed to look at collaboration across Europe, using the links of the European Association for Palliative Care and the European Academy of Neurology. Results 298 people completed the survey—178 from palliative care and 120 from neurology from over 20 countries across Europe. They reported that there was good collaboration in the care for people with amyotrophic lateral sclerosis and cerebral tumours but less for other progressive neurological diseases. The collaboration included joint meetings and clinics and telephone contacts. All felt that the collaboration was helpful, particularly for maintaining quality of life, physical symptom management, psychological support and complex decision making, including ethical issues. Discussion The study shows evidence for collaboration between palliative care and neurology, but with the need to develop this for all neurological illness, and there is a need for increased education of both areas.

BACKGROUND:Advance care planning (ACP) is influenced by several factors (e.g., patient's readiness to engage, clinician's skills, and the cultural environment). Availability of reliable and valid self-reported measures of the ACP domains is crucial, including cross-cultural equivalence.AIM:To culturally adapt into Italian the 19-item Quality of Communication (QOC) and the 4-item ACP Engagement (4-item ACP-E) questionnaires.METHODS:We translated and culturally adapted the two questionnaires and produced a significant other (SO) version of the QOC (QOC-SO). Each questionnaire was field tested via cognitive interviews with users: nine patients (QOC, 4-item ACP-E) and three SOs (QOC-SO) enrolled at three palliative care services.RESULTS:We made minor changes to 5/19 QOC items, to improve clarity and internal consistency; we changed the response option 'didn't do' into 'not applicable'. Finally, we slightly revised the QOC to adapt it to the paper/electronic format. QOC debriefing revealed that the section on end of life was emotionally challenging for both patients and SOs. We simplified the 4-item ACP-E layout, added a sentence in the introduction, and revised the wording of one item, to improve coherence with the Italian ACP legislation. ACP-E debriefing did not reveal any major issue.CONCLUSIONS:Results were satisfactory in terms of semantic, conceptual and normative equivalence of both questionnaires. Acceptability was satisfactory for the 4-item ACP-E, while findings of the QOC cognitive debriefing informed a major amendment of a pilot trial protocol on ACP in multiple sclerosis (ConCure-SM): use of the interviewer version only, in an adaptive form. Psychometric testing of both questionnaires on a large, independent sample will follow.

Objectives: To ascertain the involvement of palliative care with neurology services in the care of people with amyotrophic lateral sclerosis (ALS) in the United Kingdom, Italy and Switzerland, in particular the collaboration with and referral from neurology, the involvement in multidisciplinary team care and in the respiratory support of ALS patients. Methods: In 2019, two online surveys were undertaken of palliative care specialists, using specialist groups of the European Academy of Neurology, European Association of Palliative Care and the Association of Palliative Medicine for Great Britain and Ireland. Results: The respondents were specialist palliative care professionals, predominantly senior doctors, involved in the care of people with ALS. As the numbers of respondents from many countries were in single figures the analysis was restricted to the United Kingdom, Italy and Switzerland. The time of involvement varied, with early involvement commonest in the UK. Barriers to referral included neurologists not referring and financial issues, particularly in Switzerland. The reluctance of patients and families to see palliative care services was reported as less than 20% in all countries. Respondents were often involved in the care of people receiving noninvasive ventilation (NIV), in all countries. and with tracheostomy ventilation (TV), particularly in Italy. Conclusions: Palliative care services are often involved in the care of people with ALS, but the extent and timing of involvement varies. The use of clinical guidelines and education on palliative care for neurology services may encourage collaboration, for the benefit of people with ALS and their families.

BackgroundLaw 219/2017 was approved in Italy in December 2017, after a years-long debate on the autonomy of healthcare choices. This Law, for the first time in Italian legislation, guarantees the patient's right to request for withdrawal of life-sustaining treatments, including mechanical ventilation (MV).ObjectiveTo investigate the current status of MV withdrawal in amyotrophic lateral sclerosis (ALS) patients in Italy and to assess the impact of Law 219/2017 on this practice.MethodsWe conducted a Web-based survey, addressed to Italian neurologists with expertise in ALS care, and members of the Motor Neuron Disease Study Group of the Italian Society of Neurology.ResultsOut of 40 ALS Italian centers, 34 (85.0%) responded to the survey. Law 219/2017 was followed by an increasing trend in MV withdrawals, and a significant increase of neurologists involved in this procedure (p 0.004). However, variations across Italian ALS centers were observed, regarding the inconsistent involvement of community health services and palliative care (PC) services, and the intervention and composition of the multidisciplinary team.ConclusionsLaw 219/2017 has had a positive impact on the practice of MV withdrawal in ALS patients in Italy. The recent growing public attention on end-of-life care choices, along with the cultural and social changes in Italy, requires further regulatory frameworks that strengthen tools for self-determination, increased investment of resources in community and PC health services, and practical recommendations and guidelines for health workers involved.

Background In 2017, the European Association for Neuro-Oncology (EANO) published the guideline for palliative care (PC) in adults with glioma. The Italian Society of Neurology (SIN), the Italian Association for Neuro-Oncology (AINO), and the Italian Society for Palliative Care (SICP) joined forces to update and adapt this guideline to the Italian context and aimed to involve patients and carers in the formulation of the clinical questions. Methods During semi-structured interviews with glioma patients and focus group meetings (FGMs) with family carers of deceased patients, participants rated the importance of a set of pre-specified intervention topics, shared their experience, and suggested additional topics. Interviews and FGMs were audio-recorded, transcribed, coded, and analyzed (framework and content analysis). Results We held 20 interviews and five FGMs (28 carers). Both parties considered the pre-specified topics as important, chiefly information/communication, psychological support, symptoms management, and rehabilitation. Patients aired the impact of focal neurological and cognitive deficits. Carers reported difficulties in dealing with patient’s behavior and personality changes and appreciated the preservation of patient’s functioning via rehabilitation. Both affirmed the importance of a dedicated healthcare path and patient’s involvement in the decision-making process. Carers expressed the need to be educated and supported in their caregiving role. Conclusions Interviews and FGMs were well informative and emotionally challenging. Both parties confirmed the importance of the pre-specified topics, and carers suggested one additional topic: education/support to caregivers. Our findings strengthen the importance of a comprehensive care approach and of addressing the needs of both patients and their family carers.

Objectives Implementation of advance care planning (ACP) in people with progressive multiple sclerosis (PwPMS) is limited. We aimed to involve users (PwPMS, significant others, and healthcare professionals involved in PwPMS care) in the evaluation and refinement of a booklet to be used during the ACP conversations. Methods This qualitative study consisted of cognitive interviews with PwPMS and significant others and a focus group with healthcare professionals from three Italian centers. We analyzed the interviews using the framework method and the focus group using thematic analysis. Results We interviewed 10 PwPMS (3 women; median age 54 years; median Expanded Disability Status Scale score 6.0) and three significant others (2 women; 2 spouses and one daughter). The analysis yielded three themes: booklet comprehensibility and clarity, content acceptability and emotional impact, and suggestions for improvement. Twelve healthcare professionals (7 neurologists, 3 psychologists, one nurse, and one physiotherapist) participated in the focus group, whose analysis identified two themes: booklet’s content importance and clarity and challenges to ACP implementation. Based on analysis results, we revised the booklet (text, layout, and pictures) and held a second-round interviews with two PwPMS and one significant other. The interviewees agreed on the revisions but reaffirmed their difficulty in dealing with the topic and the need for a physician when using the booklet. Conclusions Appraisal of the booklet was instrumental in improving its acceptability and understandability before using it in the ConCure-SM feasibility trial. Furthermore, our data reveal a lack of familiarity with ACP practice in the Italian context.