International Society for Quality of Life - conference 2015, Vancouver.

European Narcolepsy Day - conference 2017, Majorca

NarQoL

The development of a condition specific instrument to measure the quality of life of adolescents with narcolepsy:
Principal investigator:

• John Eric Chaplin, Gothenburg University

Conclusions:
Even patients with a relatively low burden of narcolepsy can experience a decrease in their HrQoL, which highlights the need for a narcolepsy-specific HrQoL instrument because it may identify changes in HrQoL independent of changes in narcolepsy severity. The literature suggests that patients and medical staff often have conflicting perceptions of the patient’s HrQoL in other chronic conditions and that this discrepancy is associated with low satisfaction with medical care [35]. Results derived from the NARQoL can be used to evaluate HrQoL objectively and to analyse which aspects of disease most affect a patient, which should facilitate the provision of personalized care and increase patient satisfaction.

There is a general need for enhanced efforts in the field of HrQoL research in all rare diseases. NARQoL is a useful addition to the instruments that can be used to evaluate the effects of narcolepsy in a child and adolescent population.