Local Paediatric Death Data for Barnet 2015- 2021: Which Children are Potentially Eligible for Hospice Care?
Hospice Care; Awareness; Child; Child; child death; clinical article; conference abstract; data analysis; England; Female; Hospice Care; Hospice; hospital admission; hospital mortality; Human; information center; Male; medical history; Only Child; Palliative Therapy; patient referral; prevalence; Retrospective Study; social care; time of death
Background Estimating the local population needs for children's palliative care services can prove challenging. Data has shown that most children die in hospital and not all children with life-limiting conditions (LLC) are known to local hospices at their time of death (Williams & Horsley, 2015). A recent survey conducted by Noah's Ark of North London Paediatric teams, showed that 90% of those surveyed had looked after patients with LLC and not referred them on to their local hospice (Opstad, 2021). Epidemiological studies have sought to estimate the prevalence within local populations (Williams & Horsley, 2015) of children with LLC, looking at NHS digital data (Fraser, Gibson- Smith, Jarvis, et al., 2020. Palliat Med.) from hospital admissions (Health & Social Care Information Centre, 2015). These estimations, however, come with limitations. Aims 1. Identify the causes and locations of child deaths in the local population. 2. Determine which children would have potentially met criteria for hospice referral. Design Records of local death data were analysed, with specific reference to cause and location of death and past medical history which would have made them eligible for hospice care. Results Over the six-year period analysed there were an average of 26 deaths per year from all causes. Between 5 and 18 children were found to meet hospice referral criteria each year (an average of 10 per year). 139 of the 154 total deaths occurred in hospital (90%) from all causes, but 43 (28%) of those deaths were in children with LLC and were expected. Just 19 children (12%) had a planned death at home or in a hospice setting over the sixyear period analysed. Conclusions This data supports the hypothesis from epidemiological studies that there is unmet need within the local population. Some families may choose for their child to die in a hospital, and it is difficult to scrutinise this element of choice in retrospective data analysis. However, there is clearly need for greater awareness amongst paediatric teams and families of the services offered by local hospices.
Opstad H
BMJ Supportive and Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/spcare-2022-HUNC.80" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.80</a>
Effect of selective dorsal rhizotomy on daily care and comfort in non-walking children and adolescents with severe spasticity
adolescent; risk factor; medical history; follow up; satisfaction; school child; comfort; cerebral palsy; congenital malformation; human; pain; child; controlled study; clinical article; attention; dystonia; dorsal rhizotomy; scoliosis; leg muscle; tone and motor problems; lipidoses; surgical intervention; selective dorsal rhizotomy; spasticity
Background In non-walking children with severe spasticity, daily care can be difficult and many patients suffer from pain. Selective dorsal rhizotomy (SDR) reduces spasticity in the legs, and therefore has the potential to improve daily care and comfort. Aim To examine effects of SDR on daily care and comfort in non-walking children with severe spasticity due to different underlying neurological conditions. Methods Medical history, changes in daily care and comfort and satisfaction with outcome were assessed retrospectively in non-walking children who underwent SDR in our center, with a mean follow-up of 1y 7m (range 11m-4y 3m). All eligible patients (n = 24, years 2009-2014) were included. Results Mean age at SDR was 12y 4m (SD 4y 3m, range 2y 8m-19y 3m). Associated orthopaedic problems were frequent. Seven patients underwent scoliosis correction in the same session. Most improvements were reported in dressing (n = 16), washing (n = 12) and comfort (n = 10). Median score for satisfaction was 7 on a scale of 10 (range 1-9). SDR resulted in reduction of spasticity in leg muscles. In nine patients dystonia was recorded post-operatively, mainly in children with congenital malformations and syndromes. Interpretation SDR is a single event intervention that can improve daily care and comfort in non-walking children with severe spasticity, and can safely be combined with scoliosis correction. Despite the improvements, satisfaction is variable. Careful attention is necessary for risk factors for dystonia, which may be unmasked after SDR. Copyright © 2016 European Paediatric Neurology Society
Buizer A I; van Schie P E M; Bolster E A M; van Ouwerkerk W J; Strijers R L; van de Pol L A; Stadhouder A; Becher J G; Vermeulen R J
European Journal of Paediatric Neurology
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.ejpn.2016.09.006" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2016.09.006</a>
Paediatric palliative care: Are we doing enough? a retrospective review of deaths over 5 years in an academic tertiary hospital paediatric intensive care unit
cause of death;palliative therapy;Pediatric intensive care unit;retrospective study;tertiary care center;adolescent;adult;advanced cancer;analgesia;artificial ventilation;cancer patient;Child;conference abstract;controlled study;demography;drug withdrawal;Female;human;inotropism;life sustaining treatment;major clinical study;Male;malignant neoplasm;medical history;medical record;neurologic disease;pediatric patient;resuscitation
Aims & Objectives: To study the epidemiology of deaths in our paediatric intensive care unit (PICU) over 5 years, so that we can better understand the dying experience of these patients and improve on palliative care for patients with life-limiting illnesses. Methods The medical records of all patients who died in the PICU from 2012 to 2016 were reviewed. Information including demographic data, past medical history, cause of death, referral to palliative care and use of life-sustaining therapies were collated. Results 81 patients died in the PICU from 2012 to 2016. Most deaths occurred in children aged 11 to 18 years old (31%), with a median age of 14. 69 (85%) patients had pre-existing life-limiting medical conditions, such as cancer and neurological disease. Of the 81 patients, 6 (7%) were known to palliative care services prior to admission and 6 (7%) were referred to palliative care during the admission. In terms of life-sustaining measures, 64 (79%) had invasive ventilation, 60 (74%) required inotropic support and 17 (21%) had cardiopulmonary resuscitation. In those whom death was expected, 59 (75%) patients received analgesia during the last 24 hours before death. 64 (79%) patients died after withdrawal or withholding of life-sustaining measures and 14 (17%) died after unsuccessful CPR. Conclusions Although majority of paediatric patients who died had pre-existing life-limiting conditions, very few were referred to palliative care. More can be done to improve the care of these patients, such as early referral to palliative care and establishment of advanced care plans.
Ng MCG;Koh PL
Pediatric Critical Care Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/01.pcc.0000537849.40363.f7" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537849.40363.f7</a>
Historical Developments In Children's Deep Brain Stimulation
Brain Depth Stimulation; Dystonia; Pediatrics; Adult; Basal Ganglion; Central Nervous System; Child; Clinical Feature; Clinical Outcome; Clinical Study; Degenerative Disease; Dystonia/su [surgery]; Dystonic Disorder/su [surgery]; Globus Pallidus; Human; Medical History; Myoclonus; Myoclonus Dystonia/su [surgery]; Nerve Cell Network; Nerve Conduction; Neuromodulation; Palliative Therapy; Priority Journal; Review; Side Effect; Subthalamic Nucleus; Surgery; Symptom; Thalamus; Thalamus Nucleus
Background Heterogeneous by the underlying pathobiology and clinical presentation, childhood onset dystonia is most frequently progressive, with related disability and limitations in functions of daily living. Consequently, there is an obvious need for efficient symptomatic therapies. Methods and Results Following lesional surgery to basal ganglia (BG) and thalamus, deep brain stimulation (DBS) is a more conservative and adjustable intervention to and validated for internal segment of the globus pallidus (GPi), highly efficient in treating isolated "primary" dystonia and associated symptoms such as subcortical myoclonus. The role of DBS in acquired, neurometabolic and degenerative disorders with dystonia deserves further exploration to confirm as an efficient and lasting therapy. However, the pathobiological background with distribution of the sequellae over the central nervous system and related clinical features, will limit DBS efficacy in these conditions. Cumulative arguments propose DBS in severe life threatening dystonic conditions called status dystonicus as first line therapy, irrespective of the underlying cause. There are no currently available validated selection criteria for DBS in pediatric dystonia. Concurrent targets such as subthalamic nucleus (STN) and several motor nuclei of the thalamus are under exploration and only little information is available in children. DBS programming in paediatric population was adopted from experience in adults. The choice of neuromodulatory DBS parameters could influence not only the initial therapeutic outcome of dystonic symptoms but also its maintenance over time and potentially the occurrence of DBS related side effects. Conclusion DBS allows efficient symptomatic treatment of severe dystonia in children and advances pathophysiological knowledge about local and distributed abnormal neural activity over the motor cortical-subcortical networks in dystonia and other movement disorders. Copyright © 2016 The Authors
Cif L; Coubes P
European Journal Of Paediatric Neurology
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1016/j.ejpn.2016.08.010