Background and purpose: No previous research has examined the psychosocial adjustment of chronic narcolepsy patients following efficacious pharmacotherapy. In contrast, considerable research has examined the process of psychosocial adjustment following surgical relief of chronic epilepsy. This process can manifest as a clinical syndrome, the 'burden of normality', comprising psychological, behavioural, affective and sociological features. The aim of the present study was to characterise the process of psychosocial adjustment of patients with successfully treated narcolepsy and to explore the applicability of the burden of normality.
Patients and methods: Thirty-three narcolepsy patients and 31 epilepsy surgery patients were recruited through routine outpatient follow-up at the Austin Hospital in Melbourne. All patients underwent in-depth, qualitative psychosocial assessment using a well-validated semi-structured interview, the Austin CEP Interview. They were also administered quantitative measures of anxiety (State Trait Anxiety Inventory) and depression (Beck Depression Inventory-II).
Results: Narcolepsy patients spontaneously reported similar themes of post-treatment adjustment to successfully treated epilepsy patients, including symptoms of the burden of normality. Chi-squared analyses revealed that the two groups differed only on disease-specific factors, reflecting the later diagnosis and treatment of narcolepsy (P<0.05).
Conclusion: The results support a general model of adjustment following successful treatment of chronic neurological illness, as the patient discards perceptions of illness and behaviours associated with being 'sick' and learns to become 'well'. Recognition of the burden of normality has important clinical implications for maximising the post-treatment care and outcome of narcolepsy patients.