Bruck, Dorothy (2001) The Impact of Narcolepsy on Psychological Health and Role Behaviours: Negative Effects and Comparisons With Other Illness Groups. Sleep Medicine, 2 (5). pp. 437-446. ISSN 1389-9457

Abstract

Adjustment to an illness can be conceptualised in terms of people's ability to adequately function in their life roles (eg worker, spouse, parent and friend). The PAIS-SR questionnaire assesses psychosocial adjustment across seven domains and was investigated in a sample of people with narcolepsy in relation to age, gender, the disruptive effects of symptoms and medication status. Participants (n=129) were recruited via the Australian narcolepsy support group and questionnaires were distributed and received by post. Males were found to be more vulnerable than females in terms of adjustment, and younger narcoleptics may have particular problems in the vocational environment. Those patients taking no medication for narcolepsy were least inclined to participate in social and leisure activities. The level of disruption reported due to symptoms was strongly associated with both psychological distress and overall psychosocial adjustment and was most notable in those taking both stimulants and tricyclic antidepressants. Narcoleptics reported more adjustment problems in comparison to three other illness groups (cardiac, mixed cancer and diabetes), with particular differences in health care orientation and psychological distress. A table of normative PAIS-SR values for narcolepsy was developed from this sample. The high levels of psychological distress found in this study are of particular concern, suggesting there is an urgent need for health professionals to provide support for adjustment problems experienced in narcolepsy across a variety of life roles. The need for action in several areas is discussed.

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