Original articlePsychosocial adjustment following relief of chronic narcolepsy
Introduction
Recent medical and technical advances have played a major role in the relief of chronic, lifestyle-limiting medical illnesses. Examples of procedures that offer patients the chance for alleviation of chronic illness include liver, heart, and kidney transplantation, cardiac surgery, and seizure surgery. Current literature has focused on patient reports of well-being and quality of life following these procedures. This research has arisen from an increased recognition of the importance of psychosocial issues in maximising treatment outcomes. Interest has also been driven by the need to evaluate the efficacy, cost-effectiveness, and net benefit of new therapeutic strategies to ascertain whether associated increases in health care expenditure are justified [1].
The alleviation of chronic illness has far-reaching and varied implications for those receiving treatment. Successful treatments offer patients the chance of a life without the burdens of physical, social, recreational, or vocational handicaps, and without the stigma and prejudices accompanying their condition. Previous research has indicated that achieving these benefits may involve a process of psychosocial adaptation and adjustment. In other words, the successful removal of chronic medical symptoms may not automatically give rise to psychosocial benefits. Outcome is also determined by the way in which the individual manages the process of post-treatment adjustment, which can encompass both positive and negative experiences. A number of studies have described the challenges associated with the post-treatment phase, including outcome following cardiac surgery [2], [3], [4], kidney transplantation [5], [6], liver transplantation [7], and seizure surgery [8], [9], [10], [11].
The most favourable candidates for seizure surgery are those with intractable complex partial seizures and a unilateral temporal lobe focus, for which patients may undergo anterotemporal lobectomy (ATL) [12]. Recent research examining outcome following ATL has shown that seizure freedom does not automatically lead to psychosocial benefits for the patient. A high percentage of patients and families describe adjustment issues associated with the patient’s psychosocial transition from chronically ill to ‘well’ [13], [14]. Bladin and colleagues [10], [11] have characterised the phenomenology of the post-treatment adjustment process and shown that its features reliably co-occur, forming a psychosocial syndrome known as the ‘burden of normality’ (Table 1).
Like epilepsy, narcolepsy–cataplexy syndrome is a chronic neurological condition in which the relief of symptoms has been made possible through advances in medical science. The provision of central nervous system (CNS) stimulants to heighten alertness after years of sleepiness allows alleviation of the most disabling feature of the condition, excessive daytime somnolence [15], [16], [17], [18].
There is a growing knowledge base of the psychosocial, co-morbid psychiatric, and neuropsychological difficulties faced by narcolepsy patients [19], [20], [21], [22], [23], [24], [25], [26]. In contrast, there has been no single prospective or retrospective investigation of psychosocial adjustment following successful treatment of narcolepsy. As chronic illnesses, narcolepsy and epilepsy share a number of similar features, including irresistible paroxysmal attacks, and deleterious psychosocial, neuropsychological and psychiatric impact [27]. Given that both conditions offer the chance for alleviation of medical symptoms, the nature of adjustment following successful treatment for narcolepsy warrants closer attention.
The primary aim of this study was to characterise the features of post-treatment adjustment in patients with successfully treated narcolepsy using a phenomenological, patient-centred approach. Qualitative methods were used as this information provides a crucial first step in characterising relevant psychosocial issues in new areas of research [28]. A secondary aim was to extend the previous research of Bladin, Wilson, and colleagues [10], [11] by examining the relevance of the burden of normality to the post-treatment phase.
Section snippets
Participants
The sample comprised 33 narcolepsy and 31 seizure surgery patients. Narcolepsy patients were consecutively recruited through the hypersomnolence outpatient clinic of the Austin Hospital, which receives the majority of referrals of psychosocially disabling narcolepsy from the community. The diagnosis of narcolepsy was made by a senior clinical neurologist using the criteria of the International Classification of Sleep Disorders, Diagnostic and Coding Manual [29], and polysomnogram results. All
Characterising post-treatment adjustment
Content analysis revealed that the descriptions of changes perceived as significant post-treatment were similar for the narcolepsy and epilepsy patients. Repeated themes of adjustment clearly emerged despite differences in the time since treatment (see Table 2). Even general interview questions proved very powerful in spontaneously eliciting these issues, which largely manifested as symptoms of the burden of normality. Thus, non-parametric statistical analyses (i.e., chi-squared) were used to
Discussion
The primary aim of this research was to document the nature of psychosocial adjustment following successful treatment of narcolepsy, using a qualitative, patient-centred approach. Narcolepsy patients clearly experienced psychosocial changes following treatment, with spontaneous reports highlighting the relevance of the burden of normality. The findings also provide validation of the model in an independent sample of epilepsy surgery patients. Taken together, these results point towards the
Acknowledgements
The authors thank associate Prof. Michael Saling, Director of Clinical Neuropsychology, for his assistance in establishing the research protocol, and Prof. Sam Berkovic, Director of the Comprehensive Epilepsy Program, for his ongoing support.
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