Patient-reported outcome measure for central disorders of hypersomnolence (PROM-CDH): development and validation
Dr. Denise Bijlenga
Senior researcher, psychologist and somnologist at the Sleep-Wake Centre of SEIN in the
Netherlands. Her expertise is statistics and methodology in the field of psychiatry and sleep medicine.
Development and validation of the PROM-CDH
Central disorders of hypersomnolence (CDH) have a major impact on patients’ quality of life (QoL). We developed and validated a disease-specific patient-reported outcome measure (PROM) to measure QoL in CDH: the PROM-CDH, for adults with narcolepsy types 1 and 2 (NT1 and NT2), and idiopathic hypersomnia (IH). The paper describes the developmental process and the first validation results.
The developmental process involved focus groups and interviews with adults with CDH, their family members and sleep medicine specialists. In the quantitative evaluation, the draft version of the PROM-CDH, together with other widely used questionnaires, was filled out online by a large group of patients with (suspected) CDH. The validation results showed that there was a good Internal consistency of the questionnaire items, meaning that the questions are related and measure the same outcome. Age, female gender, having sleep apnea, and having depression all impacted the PROM-CDH score. We identified five subscales of the PROM-CDH. The PROM-CDH scores were correlated with scores on other widely used questionnaires that measure depression, emotional well-being, or energy/fatigue. After these analyses, we made final adjustments to the PROM-CDH, resulting in the currently used version of the PROM-CDH (version 1, 2023).
The PROM-CDH questionnaire has high potential in clinical practice for patients with CDH, to support clinical care, as an important outcome in clinical trials, and as a sleep care quality indicator. Further international validation is ongoing, and it is freely available in multiple languages on https://www.sein.nl/en/prom-cdh.
Links to Paper:
Bijlenga D, De Boer J, Fronczek R, Tiemensma J, Lammers GJ. Patient-reported outcome measure for central disorders of hypersomnolence (PROM-CDH): development and validation. Sleep Med. 2025 Sep; 133:106589.
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