Poster
112
(#112) Patient Perspectives on Journey to Diagnosis, Symptoms, and Burden of Idiopathic Hypersomnia From Qualitative Interviews
Psych Congress 2025
Abstract: Introduction: Idiopathic hypersomnia (IH) is a chronic neurological condition that manifests with excessive daytime sleepiness (EDS) and other debilitating symptoms. We used qualitative interviews to understand the diagnostic journey, symptoms, and disease burden of this rare condition.
Methods: Trained qualitative researchers employed a concept elicitation approach during 60-minute interviews with each participant (recruited using purposive sampling) to collect information on diagnostic journey, symptoms, and disease burden of IH. Inductive and deductive approaches were used to code and analyze interview transcripts.
Results: Ten adults with IH (mean age, 37y; White, 100%) were interviewed; most identified as female (80%) and employed (80%). Symptoms at disease onset included EDS (70%), fatigue (30%), and oversleeping (30%). To be diagnosed, participants visited different healthcare professionals, including sleep specialists, neurologists, psychiatrists, and primary care physicians. Half of participants had symptoms for >10y before diagnosis. Participants reported receiving other diagnoses, including depression, sleep apnea, and chronic fatigue syndrome before diagnosis. The most commonly experienced symptoms were cognitive impairments (100%), EDS (90%), and fatigue (90%).
All/nearly all participants reported negative effects of IH on work/school activities (eg, forgetting information, trouble concentrating on tasks; 100%), mental health (eg, depression, anxiety, embarrassment; 100%), and instrumental activities of daily living (eg, driving, cooking; 90%). Most participants recounted negative impacts of IH on relationships (eg, less time with children, marital strain; 80%) and activities of daily living (eg, eating, bathing; 70%).
Conclusion: This study demonstrates the broad impact of IH on patients' lives and provides important insights into the IH patient experience.
Short Description: This study used qualitative interviews to collect information about diagnostic journey, symptoms, and disease burden in individuals with idiopathic hypersomnia (IH). Trained qualitative researchers used a concept elicitation approach to interview participants. Results showed that individuals with IH experienced many symptoms, including cognitive impairments, excessive daytime sleepiness, and fatigue, which affected their quality of life. Half of participants had symptoms for >10 years before diagnosis. Results provide important insights into the IH patient experience.
Name of Sponsoring Organization(s): Alkermes, Inc.
Methods: Trained qualitative researchers employed a concept elicitation approach during 60-minute interviews with each participant (recruited using purposive sampling) to collect information on diagnostic journey, symptoms, and disease burden of IH. Inductive and deductive approaches were used to code and analyze interview transcripts.
Results: Ten adults with IH (mean age, 37y; White, 100%) were interviewed; most identified as female (80%) and employed (80%). Symptoms at disease onset included EDS (70%), fatigue (30%), and oversleeping (30%). To be diagnosed, participants visited different healthcare professionals, including sleep specialists, neurologists, psychiatrists, and primary care physicians. Half of participants had symptoms for >10y before diagnosis. Participants reported receiving other diagnoses, including depression, sleep apnea, and chronic fatigue syndrome before diagnosis. The most commonly experienced symptoms were cognitive impairments (100%), EDS (90%), and fatigue (90%).
All/nearly all participants reported negative effects of IH on work/school activities (eg, forgetting information, trouble concentrating on tasks; 100%), mental health (eg, depression, anxiety, embarrassment; 100%), and instrumental activities of daily living (eg, driving, cooking; 90%). Most participants recounted negative impacts of IH on relationships (eg, less time with children, marital strain; 80%) and activities of daily living (eg, eating, bathing; 70%).
Conclusion: This study demonstrates the broad impact of IH on patients' lives and provides important insights into the IH patient experience.
Short Description: This study used qualitative interviews to collect information about diagnostic journey, symptoms, and disease burden in individuals with idiopathic hypersomnia (IH). Trained qualitative researchers used a concept elicitation approach to interview participants. Results showed that individuals with IH experienced many symptoms, including cognitive impairments, excessive daytime sleepiness, and fatigue, which affected their quality of life. Half of participants had symptoms for >10 years before diagnosis. Results provide important insights into the IH patient experience.
Name of Sponsoring Organization(s): Alkermes, Inc.
