Landau- Kleffner Syndrome: An exploration of parent experience of the diagnostic process
Landau-Kleffner syndrome (LKS) is a rare childhood disorder that is often misdiagnosed as autism or childhood psychosis (CDD) because of overlapping symptom presentation. Favorable prognoses in LKS depends on early diagnosis and treatment. While much is known about the clinical basis for LKS diagnosis, the study sought to understand the impact of the parent’s lived experiences with this process, which has not yet been investigated. Using a phenomenological approach and the medical model as a conceptual framework, semi-structured interviews were conducted with 7 parents of children diagnosed with LKS. Parent quotes were coded, categorized, and then clustered into themes to describe parents' experience of the LKS diagnostic process. Results revealed that decreased LKS awareness within the medical community posed the greatest barrier to diagnosis. Lack of awareness prevented effective communication between parents and doctors, caused doctors to miss the diagnosis even in children presenting with classic LKS signs, and forced parents into the critical role of advocates in order to overcome obstacles to prompt LKS diagnosis. These findings contribute to the existing literature by identifying barriers to LKS diagnosis and informing initiatives aimed at improving and expediting LKS diagnosis. Implications for positive social change include increased knowledge of the public and the health care community regarding the presence of LKS as a distinct disorder, which will lead to awareness of its resemblance to autism and CDD. This will decrease the social and economic burden of autism by improving the prognosis for children with LKS who would otherwise be diagnosed as autistic.
Learning Areas:Administer health education strategies, interventions and programs
Advocacy for health and health education
Clinical medicine applied in public health
Implementation of health education strategies, interventions and programs
Other professions or practice related to public health
Planning of health education strategies, interventions, and programs
Differentiate Landau-Kleffner syndrome from other neuro-developmental disorders. Describe the criteria for Landau-Kleffner syndrome diagnosis Identify contributing factors to Landau-Kleffner syndrome misdiagnosis Discuss how geographic location impacts Landau kleffner syndrome diagnosis. List ways to expedite Landau Kleffner syndrome diagnosis
Keyword(s): Children With Special Needs, Maternal and Child Health
Qualified on the content I am responsible for because: I am the principal author on this dissertation research on Landau Kleffner syndrome. In addition, I have experience as a physician assistant for 19 years and a parent of a child with Landau Kleffner syndrome for 13 years.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.