PALLIATIVE CARE IN CHILD NEUROLOGY: THE MORE YOU LOOK, THE LESS YOU SEE

Palliative care (PC) is holistic care of a child with a severe illness and his/her family which should begin soon after the diagnosis of a life-limiting illness is made. Communication forms the cornerstone of PC which begins with breaking the bad news in the right manner, continues in discussion with the family about their choices and expectations through life, and culminating in end-of-life and bereavement care. Raising awareness and devel-oping PC services will eventually lead to a reduced burden on health-care systems, higher satisfaction rates and better quality of life for the children and their families

RETROSPECTIVE STUDY ON THERAPEUTIC DRUG MONITORING OF LAMOTRIGINE IN INDIAN EPILEPTIC PATIENTS

Objective: Antiepileptic drugs (AED) are administered either singly or in combination with other drugs. Their pharmacokinetics is influenced by drug-drug interaction & inter-individual variations. Lamotrigine (LTG) is a second order AED with similar constraints. Hence studying the relationship between lamotrigine dosage and plasma concentration was undertaken to offer assistance in therapeutic regimen. Methods: Pre-dose blood samples for lamotrigine estimation were obtained from 267 patients (138adults & 127children) including 2 pregnant women. Lamotrigine estimation was done by high performance liquid chromatography. Results: In our study more children (73%) than adults (34%) were on adjunctive therapy with inhibitors (valproic acid) or inducers (phenytoin, carbamazepine, oxcarbamazepine). Irrespective of co-therapy lamotrigine level within therapeutic range with an optimal seizure control was obtained only in 76% of children and 65% adults. In case of polytherapy with valproic acid, when lamotrigine dose was maintained similar or lower than monotherapy, lamotrigine levels were 105% and 65% higher in adults and children respectively. Increased volume as observed in pregnancy had a remarkable influence on lamotrigine level. An increase in drug dose with an increase in gestation was required in both pregnant women to maintain the plasma level. Conclusion: Inter-individual variations, co-medications and clinical conditions like pregnancy influence plasma lamotrigine level. Thus, drug monitoring is essential to obtain therapeutic efficacy for individual dose optimization

The adolescent or adult with generalized tonic-clonic seizures

Primary and secondary generalized tonic-clonic seizures (GTCs) together constitute up to 50% of adolescent and adult patients with epilepsy as diagnosed by history and EEG. Syncope and psychogenic nonepileptic seizures are major differential diagnoses and must be carefully excluded in therapy-resistant cases. Individual episodes can have up to seven phases in secondarily generalized GTCs. The distinction between primary and secondary GTCs depends mainly on history and EEG, and yield can be improved with sleep deprivation or overnight recording. Epilepsies with primary or unclassified GTCs can respond to any one of the five broad-spectrum antiepileptic drugs (AEDs): valproate, lamotrigine, levetiracetam, topiramate and zonisamide. Unless a focal onset is clearly confirmed, a sodium-channel blocking AED should not be used in the initial treatment of these conditions

End of life and palliative care in neurology: Does autonomy matter?

The recent supreme court of India judgment on autonomy makes it necessary for all practicing neurologists to appraise themselves of the changing legal framework for End-of-Life decision-making in India. A pathway has been prescribed for advance care planning and medical futility decision-making. This is an evolving landscape and in a diverse country may vary substantially by geography. Living wills and advance medical directives can be prepared by our patients, and we will be required to honor these instruments. Catastrophic brain injury and life-limiting neurologic illness both require us to maintain our commitment to care when cure is no longer possible

“So we brought these players together”: a qualitative study of educators’ experiences to analyze the challenges of creating an e-learning program for neuropalliative care

Abstract Background In recent years, the subspecialty of neuropalliative care has emerged with the goal of improving the quality of life of patients suffering from neurological disease, though gaps remain in neuropalliative care education and training. E-learning has been described as a way to deliver interactive and facilitated lower-cost learning to address global gaps in medical care. We describe here the development of a novel, international, hybrid, and asynchronous curriculum with both self-paced modules and class-based lectures on neuropalliative care topics designed for the neurologist interested in palliative care, the palliative care physician interested in caring for neurological patients, and any other physician or advanced care providers interested in neuropalliative care. Methods The course consisted of 12 modules, one per every four weeks, beginning July 2022. Each module is based on a case and relevant topics. Course content was divided into three streams (Neurology Basics, Palliative Care Basics, and Neuropalliative Care Essentials) of which two were optional and one was mandatory, and consisted of classroom sessions, webinars, and an in-person skills session. Evaluation of learners consisted of multiple choice questions and written assignments for each module. Evaluation of the course was based on semi-structured qualitative interviews conducted with both educator and learner, the latter of which will be published separately. Audio files were transcribed and underwent thematic analysis. For the discussion of the results, Khan’s e-learning framework was used. Results Ten of the 12 participating educators were interviewed. Of the educators, three identified as mid-career and seven as senior faculty, ranging from six to 33 years of experience. Nine of ten reported an academic affiliation and all reported association with a teaching hospital. Themes identified from the educators’ evaluations were: bridging the global gap, getting everybody on board, defining the educational scope, investing extensive hours of voluntary time and resources, benefiting within and beyond the curriculum, understanding the learner’s experience, creating a community of shared learning, adapting future teaching and learning strategies, and envisioning long term sustainability. Conclusions The first year of a novel, international, hybrid, and asynchronous neuropalliative care curriculum has been completed, and its educators have described both successes and avenues for improvement. Further research is planned to assess this curriculum from the learner perspective

Palliative care to support the needs of adults with neurological disease.

Neurological diseases cause physical, psychosocial, and spiritual or existential suffering from the time of their diagnosis. Palliative care focuses on improving quality of life for people with serious illness and their families by addressing this multidimensional suffering. Evidence from clinical trials supports the ability of palliative care to improve patient and caregiver outcomes by the use of outpatient or home-based palliative care interventions for people with motor neuron disease, multiple sclerosis, or Parkinson's disease; inpatient palliative care consultations for people with advanced dementia; telephone-based case management for people with dementia in the community; and nurse-led discussions with decision aids for people with advanced dementia in long-term care. Unfortunately, most people with neurological diseases do not get the support that they need for their palliative care under current standards of healthcare. Improving this situation requires the deployment of routine screening to identify individual palliative care needs, the integration of palliative care approaches into routine neurological care, and collaboration between neurologists and palliative care specialists. Research, education, and advocacy are also needed to raise standards of care. [Abstract copyright: Copyright © 2023 Elsevier Ltd. All rights reserved.