How to counsel caregivers on their child’s LGS diagnosis

By Courtney Manser, MD, CCFP (PC) | Fact-checked by Barbara Bekiesz
Published September 6, 2023

Key Takeaways

  • LGS is a lifelong disease with a poor prognosis—therefore, the involvement of parents and/or caregivers is vital to avoid adverse outcomes and ensure proper patient care.

  • Ongoing support through shared decision-making, active listening, and recognition of the importance of a caregiver’s role can lead to better patient outcomes.

  • Disease-specific counseling and employing an interdisciplinary approach to care is necessary, given the complexity of the disease and high incidence of fatalities due to accidents.

Lennox-Gastaut syndrome (LGS) is a developmental and epileptic encephalopathy with a high rate of drug resistance.[] LGS is usually diagnosed in early childhood. The prognosis is generally poor and often associated with developmental regression.

Patients with LGS can live into their 60s, but due to the high association with other disorders, they are more likely to die prematurely.[] 

Counseling parents and caregivers is therefore critical to fostering a strong circle of care, improving clinical outcomes in the patient, and maintaining the best possible quality of life for all involved. 

The initial conversations

Fortunately, bedside manner has become a stronger area of focus for medical schools across the country. Many schools now teach their students best practices for approaching difficult conversations, giving physicians a framework on which to rely. 

One such framework, the ABCDE rule, helps to simplify an approach.[] The breakdown is as follows:

A—Advanced preparation

This simply means that you are ready to discuss details of the patient’s specific case: you have arranged for adequate time, and you are prepared physically and emotionally for the conversation.

B—Build a therapeutic environment/relationship

Determine how much information the parents or caregivers are capable of hearing and interpreting in the initial visit.

Make sure the conversation occurs in a quiet, private environment, and ensure proper follow-up is scheduled. Sit down to speak with the caregiver(s) so that you are at eye level and no one feels rushed.

C—Communicate effectively

Begin by asking what the parents already know about their child’s diagnosis. Try to avoid medical jargon, answer questions appropriately, and always summarize the conversation at the end.

D—Deal with patient and family reactions

Be empathetic but do not argue with or criticize colleagues.

E—Encourage and validate emotions

Explore the parents’ or caregivers’ emotional response to the diagnosis. Offer reasonable hope, and discuss treatment options. During this difficult encounter, be conscious of your own emotions. Remember that difficult conversations often happen over many visits, not just the first.

Supporting caregivers

As there is no cure for LGS, the best outcomes occur when parents and caregivers of the child are actively involved and engaged.

Shared decision-making involves collaboration between the physician and family in discussions of evidence-based solutions that reflect a patient’s (and family’s) goals, values, and preferences.[] This involves developing a strong connection with the patient and their family, employing active listening, and finding common ground.

Recognizing and acknowledging the skills and knowledge of parents in the care of their child is of utmost importance to avoid power struggles and to empower parents.[]

Preparing loved ones for possible challenges

Given the poor prognosis of LGS, disease-specific counseling is important. This should not be approached in one conversation alone, but rather continuously throughout the course of the patient’s disease. 

Related: Spotting the elusive signs of Lennox-Gastaut syndrome in young patients

The mortality rate at diagnosis is between 3% and 7% in 8 to 10 years of follow up.[] Frequently, death can be from accidents. Parents need to be counseled on the possibility of drug resistance and what to do if their child experiences an uncontrolled seizure.

Epilepsy counseling should occur, featuring discussions about seizure triggers, activities to avoid or do only while supervised, and how to respond when a seizure occurs. 

Patients with LGS may require 24/7 support and will often benefit from an interdisciplinary team approach, including nursing, physiotherapy, occupational therapy, and speech therapy. Connecting parents with the LGS Foundation and the Epilepsy Foundation may be quite beneficial, as they offer a wealth of resources covering most aspects of an LGS diagnosis. 

Comprehensive treatment plans developed with a team of clinicians—including a pediatrician, neurologist, psychiatrist, neuropsychiatrist, and possibly a surgeon—are often needed to ensure the patient is receiving the best care. Treatment plans can be complex, so patients with LGS require a lot of special care and attention from parents and family. As well, the frequency of uncontrolled seizures and resultant intellectual disability means counseling is essential.

What this means for you

Although LGS is diagnosed in childhood, it is a lifelong disease with many challenges. Proper counseling of parents can be vital to avoid adverse events and ensure adequate care is given to the patient. The initial conversations are never easy, but adequate preparation, time, and consideration can lead to a stronger relationship with the patient and their parents or caregivers. Shared decision-making with parents, as well as an interdisciplinary team approach to disease management, can lead to improved compliance and patient outcomes. 

Read Next: Research update: The latest news in LGS treatment
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