PROM-CDH stands for Patient-Reported Outcome Measure for Central Disorders of Hypersomnolence and is a disease-specific health-related quality of life (HRQoL) questionnaire.The PROM-CDH questionnaire was developed to gain insight into the impact of narcolepsy and idiopathic hypersomnia on a person's life. This is a more ‘holistic’ approach compared to current methods, that mainly measure the severity or frequency of symptoms. The PROM-CDH was developed according to international COSMIN guidelines. It is currently evaluated in a large group of people in the Netherlands and other European countries.
We’ve described the development process of the PROM-CDH in a scientific article, along with the initial validation results. This article was published in Sleep Medicine. The research was conducted by SEIN colleagues Denise Bijlenga, Josephine de Boer, Rolf Fronczek, and Gert Jan Lammers, in collaboration with Jitske Tiemensma from the Dutch Institute for Clinical Auditing (DICA).
How to use the PROM-CDH
The PROM-CDH questionnaire is filled out by adult patients and can be used to support consultations at the sleep-wake center in case of (suspected) narcolepsy, idiopathic hypersomnia, or central hypersomnia with another cause. Additionally, outcomes can be used at an aggregated level for quality registrations, benchmarking, and it can serve as an important outcome measure in clinical trials.
The PROM-CDH (version 1, 2023) consists of 25 questions, with answers measured on 5 sub-scales. The scoring and interpretation are described after the questionnaire.