TY - JOUR
T1 - Health, social, and economic consequences of narcolepsy
T2 - a controlled national study evaluating the societal effect on patients and their partners
AU - Jennum, Poul
AU - Ibsen, Rikke Falkner
AU - Petersen, Eva Rosa
AU - Knudsen, Stine
AU - Kjellberg, Jakob
N1 - Copyright © 2012 Elsevier B.V. All rights reserved.
PY - 2012/9
Y1 - 2012/9
N2 - Objective: Despite the fact that narcolepsy is a chronic disorder affecting younger people, there is insufficient information about its societal burden, time course, and familiar effect. We aimed to estimate the factual direct and indirect costs of narcolepsy patients and their families in a national sample using a controlled study design. Patients/Methods: Using records from the Danish National Patient Registry (1997-2009), all 816 narcolepsy patients and their partners were identified and compared with 3254 randomly chosen controls matched for age, gender, geographic area, and civil status. Direct and indirect costs, including frequencies of primary and secondary sector contacts' and procedures, medication, labor supply, and social transfer payments were extracted from the national databases. Results: Fewer patients (46.7%) than controls (51.4%) were married or cohabiting. Patients with narcolepsy had significantly higher rates of health-related contact, medication use, and a higher socioeconomic cost. Furthermore, they had lower employment rates, and those in employment had a lower income level than control subjects. Partners presented higher public health insurance and public transfers and lower income from employment. In all, the annual mean excess health-related cost, including social transfers, was €9572 for patients with narcolepsy and €3606 for their partners (both p<. 0.001). Patient consequences could be identified up to 11. years before first diagnosis and became more pronounced as the disease advanced. Conclusion: Narcolepsy causes socioeconomic consequences, not only for patients, but also for their partners, which is present years prior to disease diagnosis, confirming a diagnostic delay.
AB - Objective: Despite the fact that narcolepsy is a chronic disorder affecting younger people, there is insufficient information about its societal burden, time course, and familiar effect. We aimed to estimate the factual direct and indirect costs of narcolepsy patients and their families in a national sample using a controlled study design. Patients/Methods: Using records from the Danish National Patient Registry (1997-2009), all 816 narcolepsy patients and their partners were identified and compared with 3254 randomly chosen controls matched for age, gender, geographic area, and civil status. Direct and indirect costs, including frequencies of primary and secondary sector contacts' and procedures, medication, labor supply, and social transfer payments were extracted from the national databases. Results: Fewer patients (46.7%) than controls (51.4%) were married or cohabiting. Patients with narcolepsy had significantly higher rates of health-related contact, medication use, and a higher socioeconomic cost. Furthermore, they had lower employment rates, and those in employment had a lower income level than control subjects. Partners presented higher public health insurance and public transfers and lower income from employment. In all, the annual mean excess health-related cost, including social transfers, was €9572 for patients with narcolepsy and €3606 for their partners (both p<. 0.001). Patient consequences could be identified up to 11. years before first diagnosis and became more pronounced as the disease advanced. Conclusion: Narcolepsy causes socioeconomic consequences, not only for patients, but also for their partners, which is present years prior to disease diagnosis, confirming a diagnostic delay.
U2 - 10.1016/j.sleep.2012.06.006
DO - 10.1016/j.sleep.2012.06.006
M3 - Journal article
C2 - 22841027
SN - 1389-9457
VL - 13
SP - 1086
EP - 1093
JO - Sleep Medicine
JF - Sleep Medicine
IS - 8
ER -
