Decision Aids
Patient decision aids are tools that help people become involved in decision making by making explicit the decision that needs to be made, providing information about the options and outcomes, and by clarifying personal values. They are designed to complement, rather than replace, counseling from a health practitioner. This inventory will assist you to search for decision aids on particular health topics.
Anesthesia
- Anesthesia in Young Children.
Resource Location: Science Daily:Neuropsychological and Behavioral Outcomes after Exposure of Young Children to Procedures Requiring General Anesthesia. Anesthesiology, 2018; 1 DOI: 10.1097/ALN.0000000000002232
https://drive.google.com/open?id=1XWEdi1FVjlmNLMTdUKsLx11_1EmHvB9_
Cannabis
- Position Statement on the Use of Medical Cannabis for the Treatment of Epilepsy in Canada
Resource location: By the Canadian League Against Epilepsy Medical Therapeutics Committee, Invited Experts and Collaborators - Effect of Cannabidiol on Drop Seizures in the Lennox–Gastaut Syndrome:
Resource location :N Engl J Med 2018;378:1888-97. DOI: 10.1056/NEJMoa1714631 Copyright © 2018 Massachusetts Medical Society. - Cannabis for the treatment of paediatric epilepsy? An update for Canadian paediatricians :
Resource location © The Author(s) 2018. Published by Oxford University Press on behalf of the Canadian Paediatric Society. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com - Trial of Cannabidiol for Drug-Resistant Seizures in the Dravet Syndrome:
Resource location: The New England Journal of Medicine Downloaded from nejm.org at UNIVERSITY OF TORONTO on February 6, 2019. - Efficacy and Safety of Cannabidiol in Epilepsy: A Systematic Review and Meta‑Analysis:
Resource location: Published online: 3 November 2018 © Springer Nature Switzerland AG 2018
GT Insertion
- Decision-making around gastrostomy tube feeding in children with neurologic impairment: Engaging effectively with families:
Resource Location: Paediatrics & Child Health, 23(3), 209-213. doi:10.1093/pch/pxx193 [doi] - Shared decision-making and children with disabilities: Pathways to consensus.:
Resource location: Pediatrics, 139(6), 10.1542/peds.2017-0956. doi:e20170956 [pii] - Development and prospective validation of tools to accurately identify neurosurgical and critical care events in children with traumatic brain injury.Pediatric Critical Care Medicine :
Resource location: A Journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies, 18(5), 442-451. doi:https://dx.doi.org/10.1097/PCC.0000000000001120 - Family experiences with feeding tubes in neurologic impairment: A systematic review:
Resource location Pediatrics, 136(1), e140-51. doi:https://dx.doi.org/10.1542/peds.2014-4162 - Nonoral feeding for children and youth with developmental or acquired disabilities:
Resource location: Pediatrics, 134(6), e1745-62. doi:https://dx.doi.org/10.1542/peds.2014-2829 - The burden of decision-making: How professional intervention could help the parents.:
Resource location Developmental Medicine and Child Neurology, 56, 6-7. doi:http://dx.doi.org/10.1111/dmcn.12482-1 - Parental decision making and gastrostomy: Professionals' awareness of conflict and strategies for support:
Resource location: Developmental Medicine and Child Neurology, 56, 31. doi:http://dx.doi.org/10.1111/dmcn.12485 - Shared decision-making about assistive technology for the child with severe neurologic impairment:
Resource location Pediatric Clinics of North America, 61(4), 641-52. doi:https://dx.doi.org/10.1016/j.pcl.2014.04.001 - The use of family conferences in the pediatric intensive care unit:
Resource location Journal of Palliative Medicine, 16(12), 1595-601. doi:https://dx.doi.org/10.1089/jpm.2013.0284 - Percutaneous endoscopic gastrostomy placement: Caregiver decision making in Taiwan:
Resource location Journal of the Formosan Medical Association = Taiwan Yi Zhi, 112(2), 99-104. doi:https://dx.doi.org/10.1016/j.jfma.2012.04.002 - Mothers' process of decision making for gastrostomy placement:
Resource location Qualitative Health Research, 22(5), 587-594. doi:http://dx.doi.org/10.1177/1049732311423841 - Decision-making around gastrostomy-feeding in children with neurologic disabilities:
Resource location Pediatrics, 127(6), e1471-81. doi:https://dx.doi.org/10.1542/peds.2010-3007 - An emergent court intervention to determine the ability of a family to petition for a feeding PEG tube against the advice of the medical team:
Resource location Journal of the American Geriatrics Society, 58, S133-S134. doi:http://dx.doi.org/10.1111/j.1532-5415.2010.02850.x
Epilepsy Surgery
- Insula and insolo-opercular epilepsy in childhood: An SEEG study
Resource location: ELSEVIER Journal homepage - Hemispherotomy: St. Louis Children’s Hospital One Children’s Place St. Louis, MO 63110
Resource location https://www.stlouischildrens.org/conditions-treatments/epilepsy-center/surgical-procedures/hemispherotomy - Great Ormond Street Hospital for Children NHS Foundation TrustI Great Ormond Street in London UK. (One of the best epilepsy surgery centres in Europe)
- The Epilepsy Foundation Website –
Resource location https://www.lhsc.on.ca/paediatric-epilepsy-program - The Brain Recovery Project, Childhood Epilepsy Surgery Foundation
Resource location: https://www.brainrecoveryproject.org/research/functional-impacts-of-large-resective-disconnective-pediatric-epilepsy-surgery/ - Epilepsy Surgery in Children and Adults
Resource location: Lancet Neurol 201: 13: 1114–26 -
Quality of Life After Epilepsy Surgery in Children A Systematic Review and Meta – Analysis
Resource location: Neurosurgery 0:19, 2018 -
AAN Patient and Provider Shared Decision Making Tool
Resource location: American Academy of Neurology 2014
Headaches
- Idiopathic intracranial hypertension: consensus guidelines on management:
Resource Location Mollan SP, et al. J Neurol Neurosurg Psychiatry 2018;89:1088–1100. doi:10.1136/jnnp-2017-317440
Infantile Spasms
- Child Neurology Foundation:
Resource location http://www.childneurologyfoundation.org/disorders/infantile-spasms/ - Infantile Spasms | Epilepsy Foundation:
Resource location https://www.epilepsy.com/.../overview-epilepsy-syndromes/infantile-spasms, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1464162
Neuromuscular Equinis
- Evidence-based Recommendations for Pediatric Orthopaedic Practice:
Lower extremity surgery in muscular dystrophy Mulpuri K1,2, Schaeffer EK1,2, Sanders J3, Zaltz I4, Kocher MS5,6.J. Griffet a,∗,e, L. Decrocqb, H. Rauscentc, C. Richelmeb, M. Fournierd - MEDIUM TERM FOLLOW-UP OF ACHILLES TENDON LENGTHENING IN THE TREATMENT OF ANKLE EQUINUS IN CEREBRAL PALSY:
Resource location *The University of Iowa Hospitals and Clinics, Department of Orthopaedic Surgery, Iowa City, Iowa, USA# Cincinnati Sports Medicine and Orthopedic Center, Cincinnati, Ohio, US - Achilles Tendon Lengthening for Equinus Foot with Miyoshi Myopathy: A Case Report:
Resource location The Journal of Foot & Ankle Surgery
SMA
- Strategies of hip management in neuromuscular disorders: Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, Charcot-Marie-Tooth Disease and Arthrogryposis Multiplex CongenitaStrategies of hip management in neuromuscular: Department of Orthopedics, Shriners Hospital for Children, Portland, OR – USA
- Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care:
Resource location Published by Elsevier B.V. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). - Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics:
Resource location https://doi.org/10.1016/j.nmd.2017.11.004 0960-8966/© 2018 The Authors. Published by Elsevier B.V. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/ licenses/by-nc-nd/4.0/). - Parents’ Experiences of Information and Decision Making in the Care of Their Child With Severe Spinal Muscular Atrophy: A Population Survey: Kim Beernaert, PhD1, Malin Lo¨ vgren, PhD2,3, Jørgen Jeppesen, PhD4, Ulla Werlauff, PhD4, Jes Rahbek, Msc4, Thomas Sejersen, PhD5, and Ulrika
Kreicbergs, PhD2,3
Abstract
Spinal Fusion
- Refer to Referrals, Decision Aids, SMA Neuromuscular scoliosis:Understanding the options - CHEO decision Aid Inventory. Should my child have surgery –
Resource location CHEO Decision Aid Inventory https://decisionaid.ohri.ca/
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