LGS caregivers cite doctor knowledge gaps as key barrier to care
Focus groups show training needed to improve coordination, access to resources
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Caregivers in a focus group discussed their concerns and what they saw as top barriers to care.
Caregivers of people with Lennox-Gastaut syndrome (LGS) in focus groups most frequently cited knowledge gaps on the part of physicians as a barrier to accessing care and information.
Access to care, access to information, care coordination, and transitioning from pediatric to adult care were key concerns for the group of 19 caregivers, most of whom were women.
“Future work should improve healthcare provider knowledge, care coordination, transitional care, and caregiver resources that fit the unique needs of this population,” researchers wrote in a study based on the sessions. The study, “Receiving information and determining research priorities for Lennox-Gastaut syndrome: A community-focused study of caregivers’ experiences and preferences,” was published in Epilepsy Research.
LGS is a severe developmental and epileptic disorder that begins in childhood, characterized by multiple types of drug-resistant seizures and cognitive and behavioral impairments. Because LGS symptoms don’t always appear at the same time and because they resemble symptoms of other childhood epilepsies, LGS diagnosis can be delayed.
While earlier research has examined the quality of life of people with LGS and their caregivers, no studies have investigated caregivers’ priorities for future research or how the results of such research should be shared.
Access to LGS-specific care, information lacking
Researchers at the Ann & Robert H. Lurie Children’s Hospital in Chicago invited caregivers of children and adults with LGS to attend a focus group session at a conference hosted by the LGS Foundation. The 19 caregivers who agreed to participate were split into three separate groups of six to seven people each.
Facilitators posed two main questions: how caregivers would like to receive results from current studies on LGS, and what their priorities are for future patient-centered research. Discussions were recorded, transcribed, and analyzed using thematic analysis.
The theme that came up most frequently in the groups was that a lack of physician knowledge was a barrier to receiving information about LGS (10.7%). Family self-advocacy as a way of accessing information was also frequently mentioned (8.6%), along with physicians providing information about LGS and the LGS Foundation as a primary information source (7.3%). Statements describing the effect of care coordination on caregivers were also noted (6.7%).
Overall, responses revealed four main themes: access to LGS-specific care, access to LGS-specific information for families, improvements in care coordination, and improvements in transitional care.
Caregivers described difficulty finding providers familiar with LGS. One parent said that in the emergency room, “most of your general ER docs [have] never even heard of LGS, let alone any of the medications they’re on.”
Physicians “hear seizures, and they just think grand mal seizures,” another said. “They don’t think there are six other types.”
Caregivers also described geographic barriers. One said the closest large hospital was four hours away. “If you’re out in the middle of a rural area, those neurologists aren’t [as] familiar with LGS,” another said.
The lack of a formal LGS diagnosis kept some families from accessing LGS resources. “We would be able to give the information to all those people because they have the little label that says” LGS, said one caregiver.
Many described the LGS Foundation, including its YouTube channel, and other parents of LGS patients as primary sources of support and knowledge, though some wanted to receive information directly from their physicians. Information, said one caregiver, “needs to come from the doctor … because it makes you feel 100% [better].”
Caregivers also emphasized that materials should be written in plain language and be physically accessible, such as pamphlets or QR codes placed in clinical settings.
Coordinating healthcare was a high burden for caregivers, who identified it as a priority for future research. Beyond medical appointments, they noted the demands of coordinating medical, educational, and social service systems. “We are stressed beyond stressed,” one said.
While care coordinators are available at some institutions, these individuals are often “overburdened,” in the words of one caregiver, shifting coordination responsibilities back to parents.
The transition from pediatric to adult medical care can be frightening for families. Caregivers said adult providers often lacked experience and were less accustomed to involving family members in care decisions.
“I am terrified for the day [when we leave Children’s] because [we have to] go to an adult neurologist,” one parent said.
Participants also described a need for developmentally appropriate assessments and care, noting that patients may be adults in terms of age but function at a much younger cognitive level. “Yes, she might be 22, but she’s cognitively 7,” one said.
Overall, caregivers identified a need for “increased provider knowledge about LGS to ensure earlier diagnosis and appropriate treatment,” greater access to “accessible information about LGS for families,” expanded care coordination support, and “improved transitional and adult care,” the researchers said. These themes should inform how future LGS research findings are communicated to families and “areas of need that translate into priorities for future patient-centered LGS research,” they said
