The impact of narcolepsy on psychological health and role behaviours: negative effects and comparisons with other illness groups.


OBJECTIVES The study sought to (i) assess psychosocial adjustment, disruption due to symptoms, and medication problems in narcolepsy, (ii) determine how these variables changed with gender, age and medication status, and (iii) compare narcolepsy adjustment with three other illness groups. BACKGROUND Psychosocial adjustment to an illness can be conceptualized in terms of people's ability to function in their life roles and assessed using the Psychosocial Adjustment to Illness Scale-Self Report (PAIS-SR) questionnaire. METHODS Participants (n=129) were recruited via a support group using posted questionnaires. The PAIS-SR was supplemented with additional questionnaire material. RESULTS Males were more vulnerable than females in terms of adjustment (notably health care orientation and sexual relationships) and younger narcoleptics may have particular vocational problems. Unmedicated narcoleptics were least inclined to participate in social/leisure activities. Reported disruption 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). A table of normative PAIS-SR values for narcolepsy was developed. CONCLUSIONS Poor adjustment in terms of health care orientation and psychological distress are of particular concern. Health care that can reduce the disruption due to symptoms is especially important for adjustment.


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