Lennox–Gastaut syndrome: impact on the caregivers and families of patients

Abstract

Lennox–Gastaut syndrome (LGS) has a major impact on the health-related quality of life (HRQL) of the affected children as well as their caregivers. The primary caregiver in the family is generally the mother, with support from the father and siblings. The burden of care and the effects of the disease on the child necessitate adjustments in virtually all aspects of the lives of their family. These adjustments inevitably affect the physical, emotional, social, and financial health of the whole family. Numerous sources of support for families can help to ease the burden of care. Improvements in the treatment of LGS, in addition to helping the child with LGS, would likely help improve the HRQL of the family members. This pilot parent survey was designed to explore the impact of epilepsy on caregiver HRQL. Parents of children with epilepsy who had contacted the Epilepsy Information Service at the Wake Forest University School of Medicine, Winston-Salem, NC, USA, were sent questionnaires comprising open- and closed-ended questions. A total of 200 surveys were distributed, with a return rate of 48%. The results revealed that 74% of the parents believed that having a child with epilepsy brought them and their partner closer together. However, when the parents were asked to explain the manner in which epilepsy affected their families, answers included continuous stress, major financial distress, and lack of time to spend with other children. Information and resources for the families of children with LGS could help improve the HRQL of both the patients and their relatives.

Keywords:

• health-related quality of life
• HRQL
• epilepsy
• relatives
• siblings

Supplementary materials

Resources

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.⁶ 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.

• The LGS Foundation: 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; [phone].

• The Epilepsy Foundation: a national voluntary agency dedicated solely to the welfare of people with epilepsy in the US 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; [phone].

• Epilepsy Information Service: 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 others, as well as individual and group counseling for patients and their families. http://www.wakehealth.edu/Neurosciences/Comprehensive-Epilepsy-Center/; [email protected]; [phone].

• Family Caregiver Alliance: an information, education, research, and advocacy organization that works to support and sustain families nationwide caring for loved ones with chronic disabling health conditions. https://www.caregiver.org; [phone].

• National Alliance for Caregiving: 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 over 1,000 consumer-oriented caregiver resources. http://www.caregiving.org.

• National Respite Locator: a service that helps parents, family caregivers, and professionals find respite services in their state and local area to match their specific needs. http://www.archrespite.org/respitelocator; [phone], ext. 223.

In addition to these national resources, community resources for families with LGS include:

• Public health departments

• Social services departments

• Community clinics

• Mental health programs

• Rehabilitation services

• Vocational rehabilitation programs

• Exceptional children services

• Transportation programs

• Medication assistance programs

• Epilepsy camps.

Sample card

My child has special needs

Please be understanding. My child developed epilepsy at 18 months and has severe developmental delays, much like an autistic child. My child is NOT a bad child, and I am NOT a bad parent. My child is having a meltdown and it is common in children who are frustrated and cannot communicate with us. You cannot imagine what it is to live with this situation every day, and whispers and stares do not help. Please spare a thought for the child who struggles to stay calm and regulated and for the parents who are constantly stared at, judged, and criticized. Please educate yourself before you judge. Parents and families like us need all the support we can get. Please visit this website (personal website or Facebook) for more information on our story or visit these websites for additional information: http://www.lgsfoundation.org or http://www.epilepsyfoundation.org.

Acknowledgments

The meeting of the expert committee convened to discuss the differential diagnosis of LGS in June 2012 in Chicago, IL, USA, and was supported by a grant from Eisai Inc., which had no direct control of the group’s activities. Writing support for this manuscript was provided by Aric J Fader PhD of MedVal Scientific Information Services LLC and Brian Kearney PhD, an agent of MedVal Scientific Information Services LLC, and was funded by Eisai Inc., which did not have editorial control of the content. This manuscript is an original work and was prepared according to the International Society for Medical Publication Professionals’ Good Publication Practice for Communicating Company-Sponsored Medical Research: The GPP2 Guidelines.

Disclosure

Dr Gibson was a member of an expert committee for Eisai Inc. and received an honorarium for her participation. Dr Gibson also discloses that she has participated in the scholarship committee of UCB Pharma and has received reimbursement for this; she has been a consultant with Eisai Inc. in the development of two patient educational videos for which she received payment. Members of the expert committee included John M Pellock MD (cochairman), Richmond, VA, USA; James W Wheless MD, Memphis, TN, USA (cochairman); Blaise FD Bourgeois MD, Boston, MA, USA; Laurie M Douglass MD, Boston, MA, USA; Patricia A Gibson MSSW, DHL, ACSW, Winston-Salem, NC, USA; Tracy A Glauser MD, Cincinnati, OH, USA; Eric H W Kossoff MD, Baltimore, MD, USA; Georgia D Montouris MD, Boston, MA, USA; Jay Salpekar MD, Baltimore, MD, USA; Raman Sankar MD, PhD, Los Angeles, CA, USA; W Donald Shields MD, Los Angeles, CA, USA; and Christina SanInocencio, New York, NY, USA.