Alzheimer’s Disease-Health Index reliable tool to measure patient-reported disease burden
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Key takeaways:
- Researchers developed questions about Alzheimer’s disease symptoms based on patient interviews and data from a cross-sectional study.
- Patients reported the tool was relevant, comprehensive and easy to use.
The Alzheimer’s Disease-Health Index is a reliable tool for individuals to self-report changes in symptoms or response to therapy, according to research presented at the Alzheimer’s Association International Conference.
“As therapeutic advancements are made in the field of Alzheimer’s disease, it is crucial to have a fully validated, sensitive and reliable disease-specific, patient-reported outcome measure to accurately measure changes in disease burden,” Charlotte Engebrecht, BS, clinical research coordinator at the Center for Health + Technology at University of Rochester Medical Center, and colleagues wrote in a poster.
Seeking to develop a self-reporting mechanism for AD, researchers conducted interviews with 15 individuals with AD and mild cognitive impairment to determine significant symptoms, then conducted a national cross-sectional study of 104 individuals with AD to ascertain the prevalence and importance of those symptoms.
Researchers selected questions for the first version of the Alzheimer’s Disease-Health Index (AD-HI) based on frequency and importance to the cross-sectional cohort, along with participants’ response to therapeutic intervention, and used factor analysis to divide questions into subscales of specific disease burden. They then conducted beta testing to assess relevance and utility of the tool as well as reliability of questions and subscales over 14 days.
According to results, beta testing with 15 participants found the AD-HI relevant, comprehensive and easy to use, while reliability was established with input from 23 caregivers. The final AD-HI was divided into 9 subscales — memory, cognition, fatigue, sleep/daytime sleepiness, social health, pain, communication, emotional health and activity participation — that measure patient perception of overall health and disease state.
“The development, optimization and validation of the AD-HI provides researchers and clinicians with a reliable mechanism to measure relevant changes in how a patient feels and functions over time, or in response to therapeutic intervention,” Engebrecht and colleagues wrote.