Tools and Strategies to Integrate Multi-Domain Information for Personalized Decision-Making in Oncological Care Pathways: A Scoping Review.

Introduction: There is a growing interest in personalized decision-making in oncology. According to the Integrated Oncological Decision-Making Model (IODM), decisions should be based on information from three domains: (1) medical technical information, (2) patients' general health status and (3) patients' preferences and goals. Little is known about what kind of tool/strategy is used to collect the information, by whom this is collected (nurse, clinician) when this is collected (moment in the care pathway), and how this information should be collected and integrated within decision-making in oncological care pathways, and what its impact is. Methods: We searched PUBMED, Embase and Web of Science in October 2023 for studies looking at tools to collect and integrate information from the three domains of the IODM. We extracted data on the content and implementation of these tools, and on decision and patient outcomes. Results: The search yielded 2576 publications, of which only seven studies described collection of information from all three domains (inclusion criteria). In the seven included studies, information on the three domains was collected through dialogue, questionnaires, and assessments (what) by a nurse (2 out of 7 studies) or by other members of the Multi-Disciplinary Team (by whom) (5 out of 7 studies). Members of the Multi-Disciplinary Team subsequently integrated the information (5 out 7 studies) during their meeting (when), with patients and family attending this meeting in 2 studies (how). In terms of decision outcomes, 5 out of 7 studies compared the treatment recommendations before and after implementation of the tools, showing a modification of the treatment plan in 3% to 53% of cases. The limited data on patient outcomes suggest positive effects on well-being and fewer complications (3 out of 7 studies). Conclusion: The seven studies identified that integrated information from the three IODM domains into treatment decision-making lacked comprehensive information regarding the strategies, process, timing and individuals involved in implementing the tools. Nevertheless, the few studies that looked at patient outcomes showed promising findings.

The role of the district nurse providing care to service users with obsessive compulsive disorder.

Service users living with Obsessive compulsive disorder (OCD) often delay or avoid seeking diagnosis or treatment because of a fear of judgement or feelings of shame associated with their obsessions and compulsions. They may feel that their behaviour defies societal norms, which can lead to social isolation, and in turn, further contribute to health inequality. When such individuals present with physical illness and are seen by district nurses, it is imperative that behaviours are understood and approached appropriately. It is important to develop therapeutic relationships and consider their holistic wellbeing. Developing a close working relationship with the mental health team as a multidisciplinary team and using the team as a resource may contribute to the overall health outcome of service users with OCD.

Fear of malignant fungating wounds.

BACKGROUND: The poor prognosis and clinical presentation of malignant fungating wounds (MFWs) can lead to service users experiencing various dimensions of fear. AIM: This article encourages district nurses (DNs) to explore the psychological factors associated with MFWs in the community setting. METHOD: The reviewed literature discusses DN practice, with supplementary sources utilised to provide a wider perspective on the multifaceted nature of the subject. FINDINGS: Guidelines advocate that DNs should promptly initiate dialogue to address fears, establish trust and enable service users with MFWs to express concerns, thus facilitating a holistic provision of care. It is crucial to leverage the multidisciplinary team and engage with other agencies to provide support for service users. Effective leadership qualities play a vital role in initiating practice changes that ultimately benefit service users, while also considering clinical governance aspects.

Written Mobility Communication in Acute Care Medical Wards: An Observational Study of Physical Therapists' and Nurses' Documentation Practice.

OBJECTIVE: Low inpatient mobility is associated with poor hospital outcomes. Poor communication between clinicians has been identified as a barrier to improving mobility. Understanding how mobility is communicated within the multi-disciplinary team may help inform strategies to improve inpatient mobility. The aim of this study was to describe written mobility communication by physical therapists and nurses in acute care medical wards. METHODS: This cross-sectional observational study was conducted across 4 hospitals in an Australian health service. A survey of physical therapists and nurses identified preferred sources and content of written mobility communication. An audit described and compared written mobility communication in the most strongly preferred documentation sources. Findings were described and compared graphically between discipline and site. RESULTS: Questionnaires were completed by 85 physical therapists and 150 nurses. Twenty-two sources of documentation about mobility were identified. Preferences for sources and content varied between disciplines. Physical therapists nominated several preferred information sources and sought and documented broader mobility content. Nurses often sought nursing documents which focused on current mobility assistance and aids, with limited communication of mobility level or mobility goals. Audits of 104 patient records found that content varied between sources and sites, and content was variably missing or inconsistent between sources. CONCLUSION: Written mobility communication focused on mobility assistance and aids, rather than mobility levels or mobility goals, with poor completion and inconsistency within documentation. More complete and consistent documentation might improve progressive mobilization of hospital inpatients. IMPACT STATEMENT: Physical therapists and nurses seek and document different content in a wide range of locations, leading to incomplete and inconsistent written documentation.Understanding and resolving these practice differences offers potential to improve mobility communication and practice.

One health: a structured review and commentary on trends and themes.

BACKGROUND: One Health (OH) is defined as a unifying approach aiming to sustainably balance and optimise the health of people, animals and the ecosystem. It recognises that the health of humans, animals (both domestic and wild), plants and the wider ecosystem are both interdependent and linked. As a concept, it aims to address complex problems requiring input from multiple disciplines. Suitable issues for OH approaches typically include global issues which can widely impact not only the health of humans and animals, but also have a significant environmental impact. Examples include emerging zoonotic diseases and antimicrobial resistance (AMR). Interpretations and use of the term OH differ in the literature and have the potential to dilute its impact. The meaning of OH among the research community has evolved over time. Here, we collate the OH relevant literature from the last two decades, identifying major themes and trends and considering how OH has been embraced differently across various geographical regions. METHODS AND RESULTS: Bibliographic databases were searched using the term "One Health" AND ("Veterinary" OR "Animal") AND ("Medicine" OR "Human") AND ("Environment" OR "Ecosystem") during the period between 1980 and 2022. Data analysis and narrative synthesis identified themes, similarities, and differences within literature. Web of Science and PubMed returned 948 and 1250 results for the period mentioned above. The predominant literature focused on human health, with veterinary health second, although often to benefit human health. It was found that OH is often utilised as a public health approach, generally towards the end of disease surveillance and control. Interestingly, while authors from low- and middle-income countries were well-represented within studies using the term OH, they were less well-represented as corresponding authors. CONCLUSIONS: The predominant focus of the literature was on human and veterinary health, implying OH approach is human-orientated, despite its suggestion that all domains share a common 'health'. Potential improvement to OH could be achieved through greater incorporation of the environmental and social sciences for a more encompassing approach.

Starting continuous improvement; creating a common understanding of stroke care delivery in a general hospital.

BACKGROUND: Continuous improvement is based on fostering practitioners' suggestions to modify their own work processes This improvement strategy is widely applied in healthcare but difficult to maintain. The cross-disciplinary nature of many care processes constitutes an extra impediment. METHODS: The study had an explorative design with a qualitative single-case approach. The case presents a project to improve the treatment of patients with thrombotic stroke. Data was obtained via hands on involvement, documents, observations, and interviews with participants in a cross-functional improvement group. A thematic analysis method was employed. RESULTS: Through learning how tasks were carried out in other disciplines, the participants developed a common understanding of why it took so long to provide treatment to stroke patients. These insights were used to implement practical changes, leading to immediate improvements in stroke care delivery. The results were fed back so that successes became visible. Participants' understandings of the local context enabled them to convince peers of the rationale of changes, setting in motion a permanent improvement structure. The participants considered that mapping and then assessing the entire workflow across disciplines were relevant methods for improving the quality of patient care. CONCLUSION: Starting an improvement project in a cross disciplinary environment requires deep engagement on the part of professionals. A quintessential prerequisite is therefore the realization that the quality of care depends on cross-disciplinary cooperation. A facilitated learning arena needs to (1) create insights into each other's colleagues' tasks and process interdependencies, (2) increase understanding of how the distribution of tasks among specialist units affects the quality of care, and (3) frequently report and provide feedback on results to keep the process going.

Bilateral Inguinal Hernias Masking Cryptorchidism: A Case Report.

This case report discusses the uncommon occurrence of bilateral inguinal hernias masking cryptorchidism in a 47-year-old male, emphasizing the complexities and nuances of diagnosing and managing undescended testes in adults. Cryptorchidism is most often identified and treated during infancy; however, its rare adult manifestation presents significant diagnostic challenges and is fraught with serious implications for fertility and malignancy if left untreated. The subject presented with long-standing bilateral groin discomfort and was initially evaluated using clinical examination and CT imaging, which diagnosed bilateral inguinal hernias but did not initially detect cryptorchidism. During the staged surgical repairs, the testes were unexpectedly discovered within the hernia sacs, significantly altering the surgical approach and postoperative management. This necessitated an intraoperative consultation and collaboration between general surgery and urology, highlighting the critical role of multidisciplinary teamwork in managing complex surgical cases. The report underscores the importance of meticulous preoperative assessment and raises awareness about the potential for unusual findings in adult inguinal hernia repairs. This case report stresses the need for careful postoperative follow-up and regular urological surveillance to monitor for potential complications, including the development of testicular cancer. This case contributes valuable insights into the management strategies and long-term considerations for adult cryptorchidism, reinforcing the need for heightened clinical suspicion in similar presentations to ensure optimal patient outcomes.

Comprehensive Orthopedic Management of an Open-Book Pelvic Fracture: A Multidisciplinary Approach in Trauma Care.

Open-book pelvic fractures are an uncommon orthopedic emergency that requires prompt recognition and treatment. A 37-year-old male was involved in high-energy trauma, resulting in an open-book pelvic fracture with bilateral sacroiliac joint diastasis, bilateral superior and inferior pubic rami fractures, a comminuted sacral fracture, and a traumatic hernia. On presentation, he was hemodynamically unstable, with bruising in the right hemipelvis. Acute treatment included a cervical collar, transfusion protocol, central venous access, and pelvic binder. Trauma and orthopedic services were consulted to manage the patient with an interdisciplinary approach. The patient initially underwent external fixation with concomitant exploratory laparotomy. Definitive treatment concluded with colorectal anastomosis, diverting loop ileostomy creation, abdominal closure, open-reduction internal fixation (ORIF) of the pelvis, and removal and reapplication of external fixation.

Consistency of CSCO AI with Multidisciplinary Clinical Decision-Making Teams in Breast Cancer: A Retrospective Study.

Background: The Chinese Society of Clinical Oncology Artificial Intelligence System (CSCO AI) serves as a clinical decision support system developed utilizing Chinese breast cancer data. Our study delved into the congruence between breast cancer treatment recommendations provided by CSCO AI and their practical application in clinical settings. Methods: A retrospective analysis encompassed 537 breast cancer patients treated at the Second Affiliated Hospital of Anhui Medical University between January 2017 and December 2022. Proficient senior oncology researchers manually input patient data into the CSCO AI system. "Consistent" and "Inconsistent" treatment categories were defined by aligning our treatment protocols with the classification system in the CSCO AI recommendations. Cases that initially showed inconsistency underwent a second evaluation by the Multi-Disciplinary Treatment (MDT) team at the hospital. Concordance was achieved when MDTs' treatment suggestions were in the 'Consistent' categories. Results: An impressive 80.4% concurrence was observed between actual treatment protocols and CSCO AI recommendations across all breast cancer patients. Notably, the alignment was markedly higher for stage I (85.02%) and stage III (88.46%) patients in contrast to stage II patients (76.06%, P=0.023). Moreover, there was a significant concordance between invasive ductal carcinoma and lobular carcinoma (88.46%). Interestingly, triple-negative breast cancer (TNBC) exhibited a high concordance rate (87.50%) compared to other molecular subtypes. When contrasting MDT-recommended treatments with CSCO AI decisions, an overall 92.4% agreement was established. Furthermore, a logistic multivariate analysis highlighted the statistical significance of age, menstrual status, tumor type, molecular subtype, tumor size, and TNM stage in influencing consistency. Conclusion: In the realm of breast cancer treatment, the alignment between recommendations offered by CSCO AI and those from MDT is predominant. CSCO AI can be a useful tool for breast cancer treatment decisions.

The last resort: reducing avoidable employee harm by improving the application of the disciplinary policy and process.

Introduction: There is growing evidence within the healthcare sector that employee investigations can harm individuals involved in the process, an organization's culture and the delivery of its services. Methods: This paper details an intervention developed by an NHS Wales organization to reduce the number of its employee investigations through an organization-wide focus that promoted a 'last resort' approach and introduced the concept of 'avoidable employee harm'. A range of associated improvement initiatives were developed to support behavior change among those responsible for determining whether an employee investigation should be initiated. Results: Over a 13-month period, organizational records showed an annual reduction of 71% in investigation cases post-intervention, resulting in an estimated 3,308 sickness days averted annually and total estimated annual savings of £738,133 (based on direct savings and costs averted). This indicates that the organization has started to embrace the "last resort" approach to using employee investigations to address work place issues. The programme was supported with training for those responsible for commissioning and leading the organization's employee investigations. Analysis of survey data from those who attended training workshops to support the programme indicated that participants showed an increased awareness of the employee investigation process post-workshop and an understanding of the concept of avoidable employee harm. Discussion: The programme is congruent with the Healthy Healthcare concept, as the study illustrates how its practices and processes have a beneficial impact on staff, as well as potentially on patients. This study highlights wider issues for consideration, including the: (1) the role of Human Resources (HR), (2) taking a multi-disciplinary approach, (3) culture and practice, (4) the responsibility of the wider HR profession.

[Research status and reflection of the mechanism of TCM manipulation in the treatment of cervical spondylosis under the background of multi-disciplinary intersection].

The study of TCM manipulation's mechanism is the key scientific issue in the current manipulation research. It is the key and difficult point on the road of modernization and internationalization of Chinese orthopedics and traumatology. Meanwhile, it is also an important way to clarify systematically the scientific connotation of TCM manipulation. At present, our country is in an important period when multi-disciplinary intersection lead knowledge production, scientific innovation, and discipline development. The trend of cross-innovation between Chinese orthopedics and traumatology and other disciplines provides the carrier and method for the study of TCM manipulation's mechanism. Cervical spondylosis is the traditional dominant disease of Chinese orthopedics and traumatology. In recent years, many scholars have applied multi-disciplinary techniques and theories to explore the mechanism of TCM manipulation by focusing on the four dimensions of muscle, bone, blood vessel and nerve. The article takes the treatment of cervical spondylosis by TCM manipulation as the research entry point, and integrates the application status and implementation strategies of various techniques and theories under the background of multi-disciplinary intersection, which is conducive to the better combination, innovation and transformation of Chinese orthopedics and traumatology with other disciplines, and provides ideas and references for systematically clarifying the scientific connotation of TCM manipulation.

Continued improvement to imaging diagnosis and treatment triage of endometriosis: The role of the multi-disciplinary conference.

Patient-centered endometriosis management tailored to the individual patient's subset of symptoms often requires highly sensitive and specific preoperative imaging. In the setting of a present ongoing learning curve among radiologists who interpret pelvis ultrasounds and MRIs for diagnosis of endometriosis, we have found that routine feedback between minimally invasive gynecology surgeons and radiologists, based on pre-operative imaging and postoperative laparoscopic findings, is essential for the continual improvement of imaging-based staging of endometriosis and empower pre-operative imaging as an important pillar of endometriosis management. We share illustrative patient cases, which, after collaborative discussion during our routine multi-institutional, multi-disciplinary conferences (MDCs) have led to improved patient counseling, better pre-surgical planning, and therefore improved patient satisfaction. Our endometriosis MDCs will continue to improve patient management in the future by providing a forum for trainees in medical, surgical, imaging, and pathology specialties to gain expertise directly from subspecialists, and participate in the care of these patients.

Comprehensive Multidisciplinary Management of Hyper-IgE Syndrome in an 11-Year-Old Female: A Pediatric Case Report.

Hyper-IgE syndrome (HIES) or Job syndrome is a rare immunodeficiency characterized by elevated levels of IgE and recurrent infections, eczema, and connective tissue abnormalities. Patients with HIES are prone to recurrent pyogenic and opportunistic infections due to impaired immune responses. Here, we present the case of an 11-year-old female diagnosed with HIES, who was admitted to the hospital with bacterial pneumonia and leg pain associated with a history of osteopenia. The patient's clinical course included fever, cough, throat pain, and leg pain. Management involved a rigorous course of antibiotics, antifungals, and cultures of pertinent pathogens, along with imaging of the lower extremity. This case underscores the importance of appropriate management strategies for patients with HIES and their comorbidities to mitigate the risk of infections and improve patient outcomes.

Management of Vertebral Defects, Anal Atresia, Cardiac Defects, Tracheoesophageal Fistula or Atresia, Renal Anomalies, and Limb Abnormalities (VACTERL) in a Child With Complex Medical Needs in the Foster Care System: A Pediatric Case Study.

Vertebral defects, anal atresia, cardiac defects, tracheoesophageal fistula or atresia, renal anomalies, and limb abnormalities (VACTERL) association is a complex congenital condition characterized by the presence of malformations that affect various organ systems. Most children born with VACTERL association require surgery shortly after birth, often undergoing multiple procedures during infancy, which can lead to a wide range of physical challenges. The unique combination of malformations in these children in addition to having complex care needs that need to be met can result in physical and social difficulties in their daily lives, affecting both their own and their caregivers' quality of life. In some cases, children with complex medical needs are placed in foster care. When children with complex health needs enter the foster care system, there is a risk of overwhelming the caretaker, leading to their needs continuing to be unmet. Pediatricians have a role not only in helping support families but also in knowing what resources are available to meet these needs, which can be dependent on what their communities offer. Pediatricians require current training to navigate their state's foster care system. This training allows pediatricians to effectively collaborate with foster families while also assisting and coordinating complex care to support these families. We present a case of a child with complex health needs placed in the foster care system, facing multiple healthcare challenges, with care delayed due to difficulty attending appointments. Highlighted is the importance of delivering supportive, personalized, and multidisciplinary care to families with children who have complex health needs, including when caretakers are within the foster care system.

'Of course you crash' Parenting a young child with neurodevelopmental difficulties.

BACKGROUND: Parents of children with neurodevelopmental disorders often experience heightened levels of parenting stress and diminished well-being. However, less is known about the well-being of parents whose children exhibit symptoms of neurodevelopmental disorders without yet having a formal diagnosis. AIM: This study aims to deepen our understanding of the need for support among families with young children with neurodevelopmental difficulties. Specifically, it explores parents' perspectives concerning their children, life circumstances, and emotional experiences in parenting. METHODS AND PROCEDURES: Qualitative semi-structured interviews were conducted with ten parents of children aged 2.5-5 years, referred to a child psychologist due to reported neurodevelopmental difficulties. The interviews were transcribed and analysed using qualitative content analysis. OUTCOMES AND RESULTS: Two themes, each containing four and three categories, respectively, emerged in the analysis: Parenting our child with neurodevelopmental difficulties is tough in so many ways and Prevent, manage and make up like a Pro. CONCLUSION AND IMPLICATIONS: The parents express very similar challenges, difficulties and problems as parents of children with diagnosed neurodevelopmental disorders. The main difference lies in the lack of accessible support or help for these parents. WHAT THIS PAPER ADDS: This study provides insights into how parents of children with suspected neurodevelopmental difficulties perceive their child and their overall life circumstances. The narratives show the challenges these parents face due to their children's multifaceted difficulties, leading to a need for multi-disciplinary support from professionals. The narratives also illustrate the strong emotions that arise in parenting, which in itself indicates a need for support. The study also provides further support for the importance of parents connecting with others facing similar life circumstances. The families often feel isolated despite the need for increased informal support in terms of more adults being involved with the children.

Perianal Fistulizing Crohn's Disease: Utilizing the TOpClass Classification in Clinical Practice to Provide Targeted Individualized Care.

BACKGROUND & AIMS: Perianal fistulation is a challenging phenotype of Crohn's disease, with significant impact on quality of life. Historically, fistulae have been classified anatomically in relation to the sphincter complex, and management guidelines have been generalized, with lack of attention to the clinical heterogenicity seen. The recent 'TOpClass classification system' for perianal fistulizing Crohn's disease (PFCD) addresses this issue, and classifies patients into defined groups, which provide a focus for fistula management that aligns with disease characteristics and patient goals. In this article, we discuss the clinical applicability of the TOpClass model and provide direction on its use in clinical practice. METHODS: An international group of perianal clinicians participated in an expert consensus to define how the TOpClass system can be incorporated into real-life practice. This included gastroenterologists, inflammatory bowel disease surgeons, and radiologists specialized in PFCD. The process was informed by the multi-disciplinary team management of 8 high-volume fistula centres in North America, Europe, and Australia. RESULTS: The process produced position statements to accompany the classification system and guide PFCD management. The statements range from the management of patients with quiescent perianal disease to those with severe PFCD requiring diverting-ostomy and/or proctectomy. The optimization of medical therapies, as well as the use of surgery, in fistula closure and symptom management is explored across each classification group. CONCLUSION: This article provides an overview of the system's use in clinical practice. It aims to enable clinicians to have a pragmatic and patient goal-centered approach to medical and surgical management options for individual patients with PFCD.

The Darker Facets of Systemic Lupus Erythematosus (SLE).

Cerebrovascular events remain a rare but serious feature of systemic lupus erythematosus (SLE). In this report, we see a 25-year-old lady who presented with sudden-onset right-sided weakness and speech disturbances. She was initiated on anti-platelet therapy and glucocorticoids. Her admission was complicated by worsening kidney function due to lupus nephritis. She responded well to immunosuppressant therapy and was discharged following resolution of her symptoms for outpatient specialist follow-up. The rarity of such cases poses a diagnostic and treatment challenge. A language barrier and difficult social circumstances can exacerbate this. However, awareness of neuropsychiatric lupus as a differential diagnosis at the acute assessment of stroke and early involvement of specialist teams, allied health professionals, and safeguarding teams can lead to a successful long-term outcome.

Cross-disciplinary mathematical modelling to benefit healthcare - could clinical pharmacology play an enabling role?

Clinical pharmacology is often the nexus in any cross-disciplinary team that is seeking solutions for human healthcare issues. The use and application of real-world data and artificial intelligence to better understand our ecosystem has influenced our view at the world and how we do things. This has resulted in remarkable advancements in the healthcare space and development of personalized medicines with great attributes from the application of models and simulations, contributing to a more efficient healthcare development process. A cross-disciplinary symposium was held in December 2023, whereby experts from different scientific disciplines engaged in a high-level discussion on the opportunities and challenges of mathematical models in different fields, possible future developments and decision making. A strong interlink amongst the disciplines represented was apparent, with clinical pharmacology identified as the one which integrates various scientific disciplines. Deliberate and strategic cross-disciplinary dialogues are required to break out of the silos and implement integration for efficiency and cost-effectiveness of novel interventions.

Variation in outcomes and practice patterns among patients with localized pancreatic cancer: the impact of the pancreatic cancer multidisciplinary clinic.

Introduction: Patients with localized pancreatic adenocarcinoma (PDAC) benefit from multi-modality therapy. Whether care patterns and oncologic outcomes vary if a patient was seen through a pancreatic multi-disciplinary clinic (PMDC) versus only individual specialty clinics is unclear. Methods: Using institutional Pancreatic Cancer Registry, we identified patients with localized PDAC from 2019- 2022 who eventually underwent resection. It was our standard practice for borderline resectable (BRPC) patients to undergo ≤4 months of neoadjuvant chemotherapy, ± radiation, followed by exploration, while locally advanced (LAPC) patients were treated with 4-6 months of chemotherapy, followed by radiation and potential exploration. Descriptive and multivariable analyses (MVA) were performed to examine the association between clinic type (PMDC vs individual specialty clinics i.e. surgical oncology, medical oncology, or radiation oncology) and study outcomes. Results: A total of 416 patients met inclusion criteria. Of these, 267 (64.2%) had PMDC visits. PMDC group received radiation therapy more commonly (53.9% versus 27.5%, p=0.001), as compared to individual specialty clinic group. Completion of neoadjuvant treatment (NAT) was far more frequent in patients seen through PMDC compared to patients seen through individual specialty clinics (69.3% vs 48.9%). On MVA, PMDC group was significantly associated with receipt of NAT per institutional standards (adjusted OR 2.23, 95% CI 1.46-7.07, p=0.006). Moreover, the average treatment effect of PMDC on progression-free survival (PFS) was 4.45 (95CI: 0.87-8.03) months. No significant association between overall survival (OS) and clinic type was observed. Discussion: Provision of care through PMDC was associated with significantly higher odds of completing NAT per institutional standards as compared to individual specialty clinics, which possibly translated into improved PFS. The development of multidisciplinary clinics for management of pancreatic cancer should be incentivized, and any barriers to such development should be addressed.

Concise review of end of life and palliative care in neuromuscular pathologies: still a long pathway ahead.

Introduction: Neuromuscular diseases (NMD) include different types of diseases depending on the deficient component of the motor unit involved. They may all be interested by a progressive and sometimes irreversible pump respiratory failure which unfortunately for some NMD may start soon after the diagnosis. Within this vast group of patients those affected by muscle diseases are a subgroup who comprises patients with an average earlier onset of symptoms compared to other NMD. Indeed it is also important to comprehend not just the patient's burden but also the surrounding families'. Defining the end of life (EoL) phase in these patients is not simple especially in the young patient population. Consequently, the late stage of disease remains poorly defined and challenging. Objectives: The aim of this review is to describe the EoL phase in NMD patients with attention to QoL and psycological status. Methods: The focus would be on one hand on the management of the psychological burden, the communication barriers, and tone of humor. Results: Those topics have been described being crucial in this group of patients as they increase tensions and burden of both patient and family, and between them and the outside world. Thus also causing their social isolation, increasing anxiety and reducing their quality of life. On the other hand the use of cough clearance devices and all the respiratory supports and their withdrawn are carefully evaluated in the view of alleviating respiratory symptoms, improving patient quality of life and above all reaching the patient's goals of care. Conclusions: Although there is no cure, the advent of supportive interventions including multidisciplinary care (MDC) has improved all the aspects of dying for patients affected by NMD; nevertheless there still a long pathway ahead.