Resources for caregivers and families of patients with <scp>L</scp>ennox‐<scp>G</scp>astaut syndrome
Notice bibliographique
Résumé
Lennox-Gastaut syndrome (LGS) has an ongoing high burden of care. Like epilepsy in general, the impact on the child and family depends on several factors, including the level of social support and extent of the resources available to deal with the condition. Health care providers should recommend these resources to patients with LGS and their families. National support, education, and advocacy groups that serve families with LGS include the following. A nonprofit organization dedicated to providing information about LGS while raising funds to pursue research, services, and programs for patients living with LGS and their families. http://www.lgsfoundation.org/ (718) 374-3800 A national voluntary agency dedicated solely to the welfare of people with epilepsy in the United States and their families. The organization works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted, and valued in society; and to promote research for a cure. http://www.epilepsyfoundation.org (also see www.epilepsy.com) (800) 332-1000 A nationwide toll-free support hotline that offers information on all aspects of seizure disorders, including LGS. The service also provides information packets, education programs about epilepsy for professionals, and individual and group counseling for patients and their families. http://www.wakehealth.edu/Neurosciences/Comprehensive-Epilepsy-Center/Epilepsy-Resources.htm [email protected] (800) 642-0500 These groups provide information, education, and advocacy for child neurologists, other medical professionals, patients, parents, and various member groups. http://www.childneurologyfoundation.org/ http://www.childneurologysociety.org/ (877) 263-5430 (651) 486-9447 An information, education, research, and advocacy organization that works to support and sustain families nationwide caring for loved ones with chronic disabling health conditions. http://www.caregiver.org (800) 445-8106 A nonprofit coalition of national organizations focusing on issues of family and caregiving. In addition to advocacy, public awareness, and other programs, the Alliance provides the Family Care Resource Connection, which includes reviews and ratings for >1,000 consumer-oriented caregiver resources. http://www.caregiving.org (301) 718-8444 A service that helps parents, family caregivers, and professionals find respite services in their state and local areas to match their specific needs. http://www.archrespite.org/respitelocator (919) 490-5577, ext. 223 A nonprofit organization based in Toronto, Canada, whose mission is to raise awareness and promote education about sudden unexpected death in epilepsy (SUDEP). http://www.sudepaware.org/index.html [001] 416 556-8770 Epilepsy Action is the leading epilepsy organization in the United Kingdom, and its goal is to improve the lives of everyone affected by the condition. https://www.epilepsy.org.uk/ 0113 210 8800 (United Kingdom) +44 (0)113 210 8800 (international) Provides direct services to patients and families living with epilepsy in Canada, and promotes advocacy and educational resources to raise awareness about epilepsy. http://www.epilepsy.ca/en-CA/Home.html (877) 734-0873 This site, which is based in Australia, provides support for carers, families, and friends. http://www.epilepsycentre.org.au/ 1300 850 081 Promotes awareness about the usefulness of dietary therapy in pediatric epilepsy. The aim of the organization is to educate parents, caregivers, health care professionals, and nurses on the effects of the ketogenic diet in controlling seizures and providing resources so that most children have access to the diet. http://www.charliefoundation.org/ (310) 393-2347 PHP offers support with respect to assistive technology, community support and outreach, information, and several resources for patients and health care professionals. http://www.php.com/ (408) 727-5775 IBE is an incorporated, not-for-profit, international organization that represents national epilepsy organizations that promote the quality of life of people living with epilepsy and their caregivers. http://www.ibe-epilepsy.org/ +353 1 210 8850 In addition to these national resources, community resources for families with LGS include: The TS Alliance is committed to finding a cure for tuberous sclerosis complex while improving the lives of those affected by: http://www.tsalliance.org [email protected] (800) 225-6872 (301) 562-9890 Patricia A. Gibson is Director of Epilepsy Information Service and Associate Professor in the Department of Neurology at Wake Forest University School of Medicine.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,001 | 0,005 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,001 | 0,000 |
| Études des sciences et des technologies | 0,003 | 0,000 |
| Communication savante | 0,001 | 0,002 |
| Science ouverte | 0,001 | 0,004 |
| Intégrité de la recherche | 0,002 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,237 | 0,063 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».