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

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.

The protean manifestations of childhood narcolepsy and their misinterpretation

“…It is not surprising that serious psychological and social disadvantages have been described in adults 25 and children 26 with narcolepsy. A recent international study of the psychosocial difficulties of children with the disorder has provided further details.…”

The Humanistic and Economic Burden of Narcolepsy

“…Although the burden of narcolepsy has been well-documented across various health outcomes of interest, including psychiatric disorders, few studies have examined this burden in relation to its societal costs, from work productivity loss and healthcare resource use. 11,15,[17][18][19][20][21][22] Accordingly, larger-scale evaluations are required to better characterize the prevalence of these costly and impactful psychiatric conditions in regards to HRQoL, direct costs, and direct costs among patients with narcolepsy.…”

Psychosocial Characteristics of Children with Central Disorders of Hypersomnolence Versus Matched Healthy Children

“…23,24 Central hypersomnia is characterized by diffi culty performing everyday tasks and diffi culty with marital and other relationships. 5,[10][11][12][13][14][15][16][17][23][24][25][26][27][28] Within the health and wellness domain, central hypersomnia is associated with reduced personal mental and physical health, with adults with central hypersomnia reporting elevated levels of depression, sleepiness, weight gain within proximity of onset of symptoms, higher rates of obesity, and higher risk of injury. 20,21,23 Adults with central hypersomnia also report reduced participation in activities.…”