Projected land ice contributions to twenty-first-century sea level rise.

The land ice contribution to global mean sea level rise has not yet been predicted1 using ice sheet and glacier models for the latest set of socio-economic scenarios, nor using coordinated exploration of uncertainties arising from the various computer models involved. Two recent international projects generated a large suite of projections using multiple models2-8, but primarily used previous-generation scenarios9 and climate models10, and could not fully explore known uncertainties. Here we estimate probability distributions for these projections under the new scenarios11,12 using statistical emulation of the ice sheet and glacier models. We find that limiting global warming to 1.5 degrees Celsius would halve the land ice contribution to twenty-first-century sea level rise, relative to current emissions pledges. The median decreases from 25 to 13 centimetres sea level equivalent (SLE) by 2100, with glaciers responsible for half the sea level contribution. The projected Antarctic contribution does not show a clear response to the emissions scenario, owing to uncertainties in the competing processes of increasing ice loss and snowfall accumulation in a warming climate. However, under risk-averse (pessimistic) assumptions, Antarctic ice loss could be five times higher, increasing the median land ice contribution to 42 centimetres SLE under current policies and pledges, with the 95th percentile projection exceeding half a metre even under 1.5 degrees Celsius warming. This would severely limit the possibility of mitigating future coastal flooding. Given this large range (between 13 centimetres SLE using the main projections under 1.5 degrees Celsius warming and 42 centimetres SLE using risk-averse projections under current pledges), adaptation planning for twenty-first-century sea level rise must account for a factor-of-three uncertainty in the land ice contribution until climate policies and the Antarctic response are further constrained.

Determining the Education and Research Priorities in Pediatric Trauma Nursing: A Delphi Study.

Trauma has a greater impact on morbidity and mortality than all other disease processes in the pediatric population; yet, there is a gap in the literature related to the scientific basis for educating and researching future practice. The purpose of this research study was to utilize the Delphi technique to identify the current education and research priorities for pediatric trauma nursing as described by the members of the Society of Trauma Nurses. Consensus on the education and research priorities was derived from a sample (n = 25) of trauma nursing experts. The pediatric trauma nursing education priorities are the following: (1) initial resuscitation; (2) assessment; and (3) evidence-based practice. The pediatric trauma nursing research priorities are the following: (1) impact of nursing care on outcomes; (2) initial resuscitation; and (3) critical care. Future efforts in educational program development and research study should focus on these priorities.

Trending Fibrinolytic Dysregulation: Fibrinolysis Shutdown in the Days After Injury Is Associated With Poor Outcome in Severely Injured Children.

OBJECTIVE: To trend fibrinolysis after injury and determine the influence of traumatic brain injury (TBI) and massive transfusion on fibrinolysis status. BACKGROUND: Admission fibrinolytic derangement is common in injured children and adults, and is associated with poor outcome. No studies examine fibrinolysis days after injury. METHODS: Prospective study of severely injured children at a level 1 pediatric trauma center. Rapid thromboelastography was obtained on admission and daily for up to 7 days. Standard definitions of hyperfibrinolysis (HF; LY30 ≥3), fibrinolysis shutdown (SD; LY30 ≤0.8), and normal (LY30 = 0.9-2.9) were applied. Antifibrinolytic use was documented. Outcomes were death, disability, and thromboembolic complications. Wilcoxon rank-sum and Fisher exact tests were performed. Exploratory subgroups included massively transfused and severe TBI patients. RESULTS: In all, 83 patients were analyzed with median (interquartile ranges) age 8 (4-12) and Injury Severity Score 22 (13-34), 73.5% blunt mechanism, 47% severe TBI, 20.5% massively transfused. Outcomes were 14.5% mortality, 43.7% disability, and 9.8% deep vein thrombosis. Remaining in or trending to SD was associated with death (P = 0.007), disability (P = 0.012), and deep vein thrombosis (P = 0.048). Median LY30 was lower on post-trauma day (PTD)1 to PTD4 in patients with poor compared with good outcome; median LY30 was lower on PTD1 to PTD3 in TBI patients compared with non-TBI patients. HF without associated shutdown was not related to poor outcome, but extreme HF (LY30 >30%, n = 3) was lethal. Also, 50% of massively transfused patients in hemorrhagic shock demonstrated SD physiology on admission. All with HF (fc31.2%) corrected after hemostatic resuscitation without tranexamic acid. CONCLUSIONS: Fibrinolysis shutdown is common postinjury and predicts poor outcomes. Severe TBI is associated with sustained shutdown. Empiric antifibrinolytics for children should be questioned; thromboelastography-directed selective use should be considered for documented HF.

Nurses' views and current practice of trauma-informed pediatric nursing care.

Grounded in research on posttraumatic stress etiology, "trauma-informed pediatric care" integrates understanding of posttraumatic stress, and specific practices to reduce posttraumatic stress, into clinical care of ill or injured children. Across five level I or II pediatric trauma centers, 232 nurses completed a survey of knowledge, opinions, self-rated competence, and current practice with regard to trauma-informed nursing care. Participants were knowledgeable and generally held favorable opinions about trauma-informed care. The majority considered themselves moderately competent in a range of relevant skills; their recent practice showed most variability with regard to teaching patients and parents how to cope with upsetting experiences.

Clinical clearance of the cervical spine in blunt trauma patients younger than 3 years: a multi-center study of the american association for the surgery of trauma.

BACKGROUND: Cervical spine clearance in the very young child is challenging. Radiographic imaging to diagnose cervical spine injuries (CSI) even in the absence of clinical findings is common, raising concerns about radiation exposure and imaging-related complications. We examined whether simple clinical criteria can be used to safely rule out CSI in patients younger than 3 years. METHODS: The trauma registries from 22 level I or II trauma centers were reviewed for the 10-year period (January 1995 to January 2005). Blunt trauma patients younger than 3 years were identified. The measured outcome was CSI. Independent predictors of CSI were identified by univariate and multivariate analysis. A weighted score was calculated by assigning 1, 2, or 3 points to each independent predictor according to its magnitude of effect. The score was established on two thirds of the population and validated using the remaining one third. RESULTS: Of 12,537 patients younger than 3 years, CSI was identified in 83 patients (0.66%), eight had spinal cord injury. Four independent predictors of CSI were identified: Glasgow Coma Score <14, GCSEYE = 1, motor vehicle crash, and age 2 years or older. A score of <2 had a negative predictive value of 99.93% in ruling out CSI. A total of 8,707 patients (69.5% of all patients) had a score of <2 and were eligible for cervical spine clearance without imaging. There were no missed CSI in this study. CONCLUSIONS: CSI in patients younger than 3 years is uncommon. Four simple clinical predictors can be used in conjunction to the physical examination to substantially reduce the use of radiographic imaging in this patient population.

Variation in DVT prophylaxis for adolescent trauma patients: a survey of the Society of Trauma Nurses.

We performed a survey of the Society of Trauma Nurses to explore current practice patterns for deep venous thrombosis prophylaxis in adolescent trauma patients and analyzed responses from 133 institutions. The majority of adult prophylaxis protocols include older adolescents. Only 41% of adult programs identified patient age as "very" important in prophylaxis decision making. Pelvic fracture, spinal cord injury, and expected immobilization were rated most important. Pharmacologic prophylaxis in 11- to 15-year-olds was infrequent, with 60% of centers using never or rarely. Use was much higher but variable among older adolescents. No consensus on deep venous thrombosis prophylaxis in adolescent trauma emerged from our survey.

Too little too late: Hypotension and blood transfusion in the trauma bay are independent predictors of death in injured children.

BACKGROUND: Hypotension is a late finding in pediatric shock despite significant blood loss; consequently, recognition of hemodynamic compromise can be delayed. We sought to describe the impact of late stage shock in children, indicated by hypotension or trauma bay blood transfusion, and quantify the association with poor outcome. METHODS: Children age < 18 from the Pennsylvania Trauma Outcome Study registry (2000-2013) were included. Primary outcome was mortality. Demographics, transfusion volume, vitals and injury severity were recorded. Multivariable logistic regression modeling was performed, with multiple imputation sensitivity analysis for missing data (<8% for all variables). RESULTS: Sixty-four thousand three hundred forty-four subjects were included with median (interquartile range) age, 9 years (4-15 years); 51% interfacility transfers; 2.0% mortality; 4.4% admission hypotension; and 1.6% trauma bay transfusion rate. Overall, 46% of hypotensive patients, 42% of transfused patients, and 63% both hypotensive and transfused died. Hypotension (odds ratio, 12.8; 95% confidence interval, 10.7-15.4; p < 0.001) and transfusion (odds ratio, 3.1; 95% confidence interval, 2.8-3.4; p < 0.001) significantly increased odds of death after controlling for injury severity, penetrating and child abuse mechanisms, admission Glasgow Coma Scale score, and age. Survival curves demonstrated worse survival for transfused patients in early (<24 hours), intermediate (1-5 days), and late (>5 days) periods (all p < 0.001). CONCLUSION: Hypotension and trauma bay blood transfusion are poor prognostic indicators. These events should signal high acuity and prompt immediate and aggressive resuscitation. Earlier recognition of shock and appropriate interventions, including increased availability of blood products to prehospital providers, may facilitate timely hemostatic resuscitation, preventing circulatory collapse and secondary brain injury. LEVEL OF EVIDENCE: Epidemiological, level III.

Principal component analysis of coagulation assays in severely injured children.

BACKGROUND: Trauma-induced coagulopathy is common and associated with poor outcome in injured children. Our aim is to identify patterns of coagulation dysregulation after injury and associate these phenotypes with relevant clinical outcomes. METHODS: We performed principal components analysis on prospectively collected data from children with the highest-level trauma activation June 2015-June 2016. Parameters included admission international normalized ratio, platelet count and thromboelastograms. Variables were reduced to principal components; principal component scores were generated for each subject and used in logistic regression with outcomes including mortality, disability, venous thromboembolism, and blood transfusion in the first 24 hours. RESULTS: We included 133 subjects with median interquartile range age =10 (5-13 years), median interquartile range Injury Severity Score =17 (9-25), 73.5% boys, 70.8% blunt trauma. principal component analysis identified 3 significant principal components accounting for 75.0% of overall variance. Principal component 1 reflected clot strength; principal component 2 reflected abnormal fibrinolysis, both hyperfibrinolysis and fibrinolysis shutdown; principal component 3 reflected global clotting factor depletion. High principal component 1 score was associated with increased mortality (odds ratio =1.63) and blood transfusion (odds ratio 1.36). Principal component 2 score was correlated with Injury Severity Score (rho 0.4) and associated with venous thromboembolism (odds ratio 1.84), functional disability (odds ratio 1.66), mortality (odds ratio 2.07) and blood transfusion (odds ratio 2.79). PC3 score was associated with increased mortality (odds ratio 1.92) and blood transfusion (odds ratio 1.25). CONCLUSION: Principal component analysis detects 3 patterns of coagulation dysregulation using widely available laboratory parameters: (1) abnormalities in clot strength; (2) abnormalities in fibrinolysis, and (3) clotting factor depletion. While all were associated with mortality and transfusion, fibrinolytic dysregulation was associated with injury severity and portends particularly poor outcome including venous thromboembolism and disability.

Implementation of clinical effectiveness guidelines for solid organ injury after trauma: 10-year experience at a level 1 pediatric trauma center.

BACKGROUND: Diagnostic imaging of pediatric blunt abdominal trauma is evolving in light of increased attention to radiation exposure. We hypothesize that the implementation of imaging guidelines has reduced total CT scans without missing clinically significant injury. METHODS: We retrospectively reviewed blunt trauma patients age 0-17 with solid organ injury who underwent CT scan at our academic level 1 pediatric trauma center between 2005 and 2014. Variables including total annual trauma admissions and CT scans, demographics, injury characteristics, and procedures were recorded. Descriptive statistics, Fisher exact and rank sum testing were performed. p<0.05 defined significance. RESULTS: Overall percentage of abdominal CT scans decreased significantly after protocol implementation. There were 498 solid organ injuries in 403 subjects. There was a significant decrease in the median percentage of low grade injuries (1.3% versus 0.6%; p=0.019) but no difference in high grade injuries (1.3% versus 1.1%; p=0.394). No patient had death, readmission or delayed diagnosis of injury requiring intervention. CONCLUSION: Implementation of imaging guidelines for blunt abdominal trauma decreased the incidence of low grade solid organ injuries at our institution, but did not inhibit diagnosis and safe management of high grade injuries. Selective imaging of trauma patients decreases childhood radiation exposure and does not result in delayed bleeding or death. LEVEL OF EVIDENCE: Level III, retrospective study.

Homemade zipline and playground track ride injuries in children.

BACKGROUND/PURPOSE: Playground track ride and homemade zipline-related injuries are increasingly common in the emergency department, with serious injuries and even deaths reported. METHODS: Retrospective review of the National Electronic Injury Surveillance System (NEISS) database (2009-2015), followed by review of our academic pediatric trauma center's prospectively-maintained database (2005-2013). We included children ages 0-17years of age with zipline-related injuries. We recorded annual incidence of zipline-related injury, zipline type (homemade or playground), injuries and mechanism. RESULTS: In the NEISS database, 9397 (95%CI 6728-12,065) total zipline-related injuries were reported (45.9% homemade, 54.1% playground). Homemade but not playground injuries increased over time. Common injuries were fracture (49.8%), contusion/laceration (21.2%) and head injury (12.7%). Fall was predominant mechanism (83%). Age 5-9 was most frequently affected (59%). Our center database (n=35, 40% homemade, 1 fatality) revealed characteristics concordant with NEISS data. Head injury was related to fall height>5ft and impact with another structure. CONCLUSIONS: Homemade zipline injuries are increasing. Children ages 5-9 are at particular risk and should be carefully supervised. Despite protective surfaces, playground ziplines cause significant head injury, extremity fracture and high rates of hospital admission. Playground surface standards should be reviewed and revised as needed. LEVEL OF EVIDENCE: Prognosis Study, Level III.

Abnormalities in fibrinolysis at the time of admission are associated with deep vein thrombosis, mortality, and disability in a pediatric trauma population.

BACKGROUND: Abnormalities in fibrinolysis are common and associated with increased mortality in injured adults. While hyperfibrinolysis (HF) and fibrinolysis shutdown (SD) are potential prognostic indicators and treatment targets in adults, these derangements are not well described in a pediatric trauma cohort. METHODS: This was a prospective analysis of highest level trauma activations in subjects aged 0 to 18 years presenting to our academic center between June 1, 2015, and July 31, 2016, with admission rapid thrombelastograph. Shutdown was defined as LY30 (lysis 30 minutes after the maximum amplitude has been reached) of 0.8% or less and HF defined as LY30 of 3.0% or greater. Variables of interest included demographics, admission vital signs and laboratory values, injuries, incidence of venous thromboembolism under our screening protocol, death, and functional disability (discharge to facility or dependence in functional independence measure category). Youden index determined optimal definition of SD, then Wilcoxon rank-sum, Kruskal-Wallis, and Fisher exact tests were performed. RESULTS: One hundred thirty-three patients are included with median age of 10 years (interquartile range [IQR], 5-13 years); male sex, 5.4%; median Injury Severity Score, 17 (IQR, 10-26); blunt mechanism, 68.4%. Youden analysis defined SD as LY30 of 0.8 or less. In total, 38.3% (n = 51) had SD on admission; 19.6% (n = 26) had HF, and 42.1% (n = 56) were normal. Mortality rate was 9.0% (n = 12), and deep vein thrombosis incidence was 10.7% (n = 13/121 surviving). Shutdown and HF were both associated with mortality (p = 0.014 and p = 0.021) and blood transfusion (p = 0.001 and p < 0.001); SD was also associated with disability (p < 0.001) and deep vein thrombosis (p = 0.002). Blunt mechanism was associated with SD, and penetrating mechanism was associated with HF (p = 0.011). Both SD (p = 0.001) and HF (p = 0.036) were associated with elevated international normalized ratio. LY30 did not differ significantly across age groups. CONCLUSIONS: Children demonstrate high rates of inhibition (SD) and overactivation (HF) of fibrinolysis after injury. Shutdown and HF are both associated with poor outcomes. Shutdown is a particularly poor prognostic indicator, accounting for the greatest percentage of death, disability, and patients requiring transfusion, as well as later development of hypercoagulable state. The addition of thrombelastograph to pediatric trauma care protocols should be considered as it contributes important prognostic and clinical information. LEVEL OF EVIDENCE: Prognostic and epidemiologic study, level III.

Elevated admission international normalized ratio strongly predicts mortality in victims of abusive head trauma.

BACKGROUND: Victims of abusive head trauma have poor outcomes compared with other injured children. There is often a delay in diagnosis because these young patients are unable to communicate with health care providers. These critically injured patients would benefit from early identification and therapy. METHODS: We performed a retrospective review of our single hospital trauma registry from 2005 to 2014. All Level 1 pediatric (age 0-17 years) trauma patients who sustained abusive head trauma were included. Exclusion criteria included no admission coagulation studies, prehospital product transfusion, preexisting coagulation disorder, or death upon arrival. Primary outcome was mortality; secondary outcomes were early blood transfusion and neurosurgical intervention. Univariate analysis included Fisher's exact and Wilcoxon rank-sum testing; we then performed logistic regression modeling and calculated adjusted odds ratios (AORs) to control for known predictors of poor outcome including hypotension, hypothermia, acidosis, Injury Severity Score (ISS), and head Abbreviated Injury Scale (AIS) score. RESULTS: In 101 total subjects, 35% (n = 35) had international normalized ratio (INR) of 1.3 or greater at admission. On univariate analysis, patients with coagulation dysregulation were more likely to have hypothermia, hypotension, acidosis, high ISS, and low Glasgow Coma Scale (GCS) score (all p < 0.05). There was no difference in age, anemia, and incidence of polytrauma. Overall mortality was 24.8% (n = 25), which varied significantly based at admission INR (60% INR ≥ 1.3 vs. 6% INR > 1.3, p < 0.001). Patients with elevated INR were also more likely to have early packed red blood cell transfusion (p = 0.003) and neurosurgical intervention (p = 0.011). In logistic regression analysis, admission INR was the strongest independent predictor of mortality, with increased odds of 3.65 (p = 0.045). AOR after controlling specifically for hypotension, hypothermia, and acidosis was 6.25 (p = 0.006), and after controlling for head AIS score and admission GCS score, the AOR was 5.27 (p = 0.007). CONCLUSION: Admission INR of 1.3 or greater strongly predicts mortality in abusive head trauma. These patients should be targeted for early aggressive interventions and monitoring with the goal of improving patient outcomes. Further study is warranted to investigate potential therapeutic targets in trauma-induced coagulation dysregulation. LEVEL OF EVIDENCE: Prognostic and epidemiologic study, level III.

Acute traumatic coagulopathy in a critically injured pediatric population: Definition, trend over time, and outcomes.

BACKGROUND: While our understanding of acute traumatic coagulopathy (ATC) in adults is advancing, the pediatric literature on ATC is limited. Children have a unique injury profile and physiologic response to trauma; however, the impact of this phenomenon on ATC has not been fully elucidated. METHODS: We performed a retrospective review of our trauma registry from 2005 to 2014. Level 1 trauma patients age 0 year to 17 years requiring admission to the intensive care unit were included. Variables included admission vital signs and laboratory studies, product transfusion, injuries, and mortality. Youden index was used to determine optimum cutoff point for admission international normalized ratio (INR) as a predictor of mortality. Logistic regression modeling was used to determine independent predictors of mortality adjusting for hypotension, hypothermia, acidosis, injury severity, hemorrhage, and head injury. χ tests were performed evaluating for association between mortality and 24-hour INR as well as between transfusion and INR correction. RESULTS: A total of 776 patients were analyzed: 29.2% (n = 227) had an admission INR of 1.3 or greater, and 13.3% (n = 103) had an admission INR of 1.5 or greater. Youden index demonstrated optimum cutoff at INR of 1.3 or greater to distinguish survivors and nonsurvivors. Overall mortality rate was 11.1% (n = 86). Elevated INR was independently associated with mortality (odds ratio, 3.77; p < 0.001) after controlling for other predictors in regression modeling. Death was also associated with elevated INR at 24 hours and worsening INR trend over time. Patients who received plasma were equally likely to normalize their INR compared with those who were not transfused (p = nonsignificant). Findings were consistent across age groups. CONCLUSION: INR likely serves as a marker of systemic dysregulation rather than a treatment target in ATC. Elevated admission INR, elevated INR at 24 hours, and overall trend in INR strongly predict mortality in a diverse pediatric trauma population; however, product transfusion did not influence the INR trend or clinical outcome. Further research is warranted to evaluate potential upstream mediators of ATC and targets for intervention in pediatric trauma patients. LEVEL OF EVIDENCE: Prognostic and epidemiologic study, level III.

Safety factors related to all-terrain vehicle injuries in children.

BACKGROUND: All-terrain vehicle (ATV)-related injuries are a significant source of pediatric trauma. We hypothesized that these injuries are caused by poor safety behavior. To test this hypothesis, we surveyed both injured and uninjured ATV riders. METHODS: A prospective convenience sample-based survey was initiated at Children's Hospital of Pittsburgh, a Level I pediatric trauma center. Patients with an ATV-related injury were asked to complete the survey for the study group (INJ), while uninjured pediatric ATV-riders completed the survey for the control group (UnINJ). The Fisher's exact probability test was used for data analysis. RESULTS: There were 38 surveys completed for INJ and 11 for UnINJ. Both groups had similar demographics. ATVs in both groups were mostly used for recreation, and most of the INJ patients were in a rural setting. Half of the ATVs were purchased second hand, and less than half were purchased from a dealer. Most dealers reviewed age recommendations for ATV use; however, many safety recommendations were not followed. INJ group had a higher percentage of children riding inappropriately sized ATVs and a lower rate of helmet use when compared with UnINJ group. In addition, there were a significant number of regulatory violations in the INJ group, including nine children (24%) riding as passengers and 5 (13%) driving on a road. CONCLUSION: These data suggest that there may be decreased safety behavior among injured pediatric ATV-riders; however, uninjured riders also demonstrate poor safety habits. The study showed that dealers do review safety regulations with consumers; however, most of the ATVs are not purchased through dealers. Therefore, we may need to shift our safety and educational focus to reach these families. LEVEL OF EVIDENCE: Prognostic/epidemiologic study, level III.

A multicenter prospective analysis of pediatric trauma activation criteria routinely used in addition to the six criteria of the American College of Surgeons.

BACKGROUND: The American College of Surgeons has defined six minimum activation criteria (ACS-6) for the highest level of trauma activations at trauma centers. The verification criteria also allow for the inclusion of additional criteria at the institution's discretion. The purpose of this prospective multicenter study was to evaluate the ACS-6 as well as commonly used activation criteria to evaluate overtriage and undertriage rates for pediatric trauma team activation. METHODS: Data were prospectively collected at nine pediatric trauma centers to examine 29 commonly used activation criteria. Patients meeting any of these criteria were evaluated for the use of high-level trauma resuscitation resources according to an expert consensus list. Patients requiring a resource but not meeting any activation criteria were included to evaluate undertriage rates. RESULTS: During the 1-year study, a total of 656 patients were enrolled with a mean age of 8 years, a median Injury Severity Score of 14, and mortality of 11%. Using all criteria, 55% of patients would have been overtriaged and 9% would have been undertriaged. If only the ACS-6 were used, 24% of patients would have been overtriaged and 16% would have been undertriaged. Among activation criteria with more than 10 patients, those most predictive of using a high-level resource were a gunshot wound to the abdomen (92%), blood given before arrival (83%), traumatic arrest (83%), tachycardia/poor perfusion (83%), and age-appropriate hypotension (77%). The addition of tachycardia/poor perfusion and pretrauma center resuscitation with greater than 40 mL/kg results in eight criteria with an overtriage of 39% and an undertriage of 10.5%. CONCLUSION: The ACS-6 provides a reliable overtriage or undertriage rate for pediatric patients. The inclusion of two additional criteria can further improve these rates while maintianing a simplified triage list for children.

Access to palliative care for people with motor neurone disease in New Zealand.

AIM: To identify the services available through hospices for people with motor neurone disease (MND) in New Zealand; to find out about the type of care and support available in each service; and to identify any barriers to access to care for these people. METHOD: A postal questionnaire was sent to hospices and palliative care services who were listed in the Hospice New Zealand directory (N=41) in March 2004. RESULTS: Thirty-five services returned completed surveys (85% response rate). All services responding offered care for people with MND, with a wide range of services being offered. Results indicated that for a small number their service contract was a barrier to accessing services. One identified the issue of bed availability for respite care and another expressed concern about long-term care. Other challenges noted included the high level of time and resources needed to care for people with MND; the complexity of multidisciplinary care; the knowledge of the disease process needed; the duration of the condition and the uncertainty of prognosis; the different focus of care compared to the care of people with cancer; and the ability to find appropriately skilled carers. CONCLUSION: Palliative care services have much to offer in the care of people with MND particularly in symptom management, respite care, and in addressing the psychological and spiritual issues that have been shown to have a greater bearing on quality of life than physical functioning. Co-ordination of service provision and timely referral to palliative care services are essential if the optimum care is to be provided. The development of the knowledge base required for effective care, a systematic approach to providing support, and effective coordination are all essential to improve the quality of life for people with MND and their families.