Psychosocial Aspects of Narcolepsy

Meeta Goswami, Charles P Pollak

• Publisher: Routledge
• Year: 2015
• ISBN:
  9781317765196
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

This groundbreaking book focuses on the impact narcolepsy has on a person's day-to-day life. It addresses the diagnosis, treatment, and management of narcolepsy with particular emphasis on psychological and social aspects of care. A multidisciplinary team of nationally and internationally respected scientists, researchers, and clinicians discuss the detrimental effects narcolepsy has on interpersonal relationships, employment, education, recreation, and other aspects of everyday life, from driving an automobile to sexual relations. Narcolepsy's effects on these and other daily activities are often neglected in the study of the disorder. This book brings into focus the personal and social costs of narcolepsy and discusses the often enormous impact that narcolepsy can have on a person's self-esteem and quality of life. Typically it takes about fifteen years for a person to be accurately diagnosed as having narcolepsy. Psychosocial Aspects of Narcolepsy is an aid to help caregivers and healthcare providers screen individuals with symptoms of daytime sleepiness and refer them promptly to appropriate professionals for diagnosis and help. The book helps these professionals find the most effective treatment methods and coping strategies for their patients who suffer from symptoms such as excessive daytime sleepiness, cataplexy, and hypnagogic hallucinations. Informative chapters address a wide variety of pertinent issues, including:

• differential diagnosis and treatment of narcolepsy
• the special needs of persons with narcolepsy
• a sociomedical model for a narcolepsy counseling service
• the psychosocial impact of narcolepsy on the individual and the family
• sociodemographic variables in narcolepsy
• the quality of life of persons with narcolepsy
• the diagnosis, treatment, and psychosocial consequences of sleep apnea
• the legal aspects of narcolepsy
• narcolepsy's profound impact on children This vital resource enables physicians and other health professionals to give optimum, comprehensive care to individuals suffering from narcolepsy. Full of informative studies and helpful coping strategies, Psychosocial Aspects of Narcolepsy belongs on the desk of every person who wants to understand the impact of narcolepsy more thoroughly and who wishes to improve the quality of life of those with the disorder.

Section I:
Quality of Life Issues in Narcolepsy

Life Effects of Narcolepsy: Measures of Negative Impact, Social Support, and Psychological Well-Being

Susan Lines Alaia

Narcolepsy is a chronic neurological disease with multiple symptoms, the primary and most disabling being excessive daytime sleepiness (EDS) (Dement 1976). It has been estimated that narcolepsy affects between two and three people per 1,000 (Regestein 1986). This is more frequent than multiple sclerosis (Broughton and Mamelak 1979). It appears that males have a slightly higher incidence of the disease than females (Billiard 1985). Age of onset is generally between 15 and 30, but it has been found in children as young as five and can begin in the fourth and fifth decades (Passouant and Billiard 1976).

The typical narcoleptic sees numerous physicians over 15 years before being correctly diagnosed (Scharf et al. 1985). The disease may not be diagnosed "until the patient is elderly as a result of lack of clinical awareness and fluctuations of symptoms" (Quan, Bamford and Beutler 1984, p. 45). There is no cure for this disease, which is generally lifelong following its onset; and only marginal symptomatic relief is available through drug treatment (Broughton and Mamelak 1979).

Broughton and Ghanem (1976) were the first to study systematically the impact of this disease on the life of the patient. They found that individuals with narcolepsy have long personal histories of marked detrimental effects involving interpersonal relationships, employment, education, recreation, and other parameters of everyday life. Subsequent research revealed these effects to be basically the same across cultures (Broughton et al. 1983). Another study showed high levels of psychopathology among narcoleptics, which the investigators considered to be a reaction to the disorder and its effects (Kales et al. 1982). The psychosocial effects of the disease are nonetheless often neglected, and there is a paucity of literature on these aspects of narcolepsy (Regestein 1986).

While there has been some evidence that narcoleptics have little interest in psychotherapy (Broughton and Ghanem 1976), those who have entered into therapy have been interested in resolving the problems they face due to the limitations of the disease as well as dealing with their feelings about being "overly sleepy people" (Regestein 1986, p. 136). Group therapy has also been suggested to help narcoleptics and their families to accept and cope with the disease (Regestein 1986) and has proven to be beneficial (Zarcone and Fuchs 1976).

Cognitive models of stress and coping (Folkman, Schaefer, and Lazarus 1979) emphasize the appraisal of stressful situations and resources available for coping. Observations in a variety of settings have shown that social support contributes to positive adjustment and provides a buffer against the effects of stress (Sarason et al. 1983). Social support is defined by Cobb (1976) as "information leading the subject to believe that he is cared for and loved, esteemed, and a member of a network of mutual obligations" (p. 300).

Schulz and Decker (1985) found a relationship between high levels of social support and high levels of well-being among persons with spinal cord injuries, a chronic condition. The effects of social support on narcolepsy, a chronic condition with pervasive life effects, appears to be a fruitful area of investigation, particularly with respect to depression. There is a high incidence of depression among narcoleptics (Regestein, Reich, and Mufson 1983). Depression and distress have been found to be negatively associated with perceived social support (Barrera 1986).

Despite the psychosocial effects of narcolepsy, a review of the literature reveals a primary focus on etiology, pathophysiological mechanisms, and medications. The purpose of the research described in this paper was to assess the life effects of narcolepsy and the extent to which nondrug treatment methods (such as behavioral/environmental strategies and psychotherapy/support groups) are prescribed. Due to the somewhat conflicting views concerning the interest of narcoleptics in psychotherapy and groups, a needs assessment of this area and related concerns was included. Another area of interest was the relationship between the severity of the negative life effects of the disease and life satisfaction, with a view to determining whether perceived social support mitigates these effects. Specific hypotheses were as follows: (a) negative impact of narcolepsy scores would be inversely correlated with psychological well-being scores; that is, those more highly impacted by narcolepsy would have less psychological well-being; (b) psychological well-being scores would be correlated with social support scores; and (c) social support scores would be inversely correlated with negative impact of narcolepsy.

Method

The research involved a national survey of approximately 500 randomly selected members of the American Narcolepsy Association. Data were descriptive, and correlational analyses were conducted to test the relationships among the negative impact of narcolepsy and psychological well-being scores, between social support and psychological well-being, and among social support and negative impact of narcolepsy scores.

Measures

The survey form consisted of 116 items and included a modified version of the Broughton et al. (1981) questionnaire. The negative impact of narcolepsy was defined operationally in terms of number and severity of symptoms; efficacy of medications; and psychosocial impact on employment, education, marital and social relationships, and leisure activities. A modified version of Goodman's (1988) Perceived Social Support Scale operationally defined social support operationally. The Affect-Balance Scale (Bradburn 1969) defined psychological well-being operationally.

Subjects

Narcoleptics were defined operationally as members of the American Narcolepsy Association who indicated that they had both excessive daytime sleepiness or sleep attacks and cataplexy symptoms. Cataplexy is pathognomic of narcolepsy and was therefore required as an auxiliary symptom to ensure that only true narcoleptics were included in the sample. This requirement is in accord with Broughton and Ghanem (1976) who considered this auxiliary symptom to be essential in their narcoleptic sample for sample homogeneity. Survey forms were mailed nationally to 500 ANA members picked at random from the organization's 60,000 members. A total of 146 narcoleptics responded. Of these 146 respondents, 102 had the required combination of symptoms. There were 42 males and 60 females in the sample.

Results

Description of Sample

The 102 subjects ranged in age from 28 to 80, with a mean age of 53.5 and a standard deviation of 11.00. Eight subjects were single, 54 were in their first marriage, 20 were remarried, three were separated, seven were widowed, and two were living with a significant other. The racial composition consisted of 91 subjects who listed themselves as Caucasian, seven as Native American, two as Black, and one as Asian. There were no Hispanics, and one subject did not respond to this question. It was clear from other data that a number of subjects listing themselves as Native American had misunderstood the term. It is probable that all these individuals were Caucasian.

Symptoms

The age at onset of symptoms ranged from 5 to 49. The mean age when symptoms began was 20.6, with a standard deviation of 9.56. Age at diagnosis ranged from 10 to 60, with a mean of 35.8 and a standard deviation of 11.09. Excessive daytime sleepiness (EDS) was the symptom of longest duration, with sleep attacks and cataplexy following by an average of six and four years respectively. The current severity of symptoms was rated using a 4-point scale ranging from 1 (mild) to 4 (most severe). Excessive daytime sleepiness has the highest severity rating mean of 2.5, with a standard deviation of 0.98.

Medication Effectiveness

In this sample, 80 (78.2%) were currently taking medications for some or all of their symptoms. Nineteen were taking medication for EDS; 18 for EDS and cataplexy, 12 for EDS and sleep attacks, 4 for cataplexy, 1 for restless nighttime sleep, and 14 for all of their symptoms. A total of 48% of 100 subjects reported tolerating some symptoms for which medication was available due to undesirable side effects of these drugs. In terms of symptom relief provided by medications, 29.7% of the subjects reported EDS as the symptom most relieved; this symptom was among the top two that were relieved least (26.6%). Cataplexy was slightly higher in the least relieved category at 29.7%.

The degree to which medication improves functioning was rated in three areas: general functioning, driving, and work. Only 2% rated general functioning as greatly improved by medications, but driving and work were rated as greatly improved by 38.6% and 30.0%, respectively. A subscale of these three variables was constructed with a possible range of 0 to 12. The mean score was 7.0 with a standard deviation of 3.45.

Life Effects: Education

Narcolepsy symptoms began before formal education was completed in 61.8% of the respondents. Among these 63 subjects, symptoms were thought to have contributed to poor marks in 64.6%, to embarrassment in 81.8%, to problems with teachers in 48.4%, with parents in 38.1%, and with friends in 37.8%.

Education level attained was scored with a range from 1 (less than twelfth grade) to 6 (post-graduate degree). The mean education level was 3.0 with a standard deviation of 1.35. This score indicates that the average education level included some college/university credits but no degree.

Life Effects: Driving

There were 95 drivers among this sample. Sleepiness was reported a problem when driving by 78% of the sample. Before diagnosis and treatment, 29% reported having had accidents due to their symptoms, and 74.2% reported having had near accidents. A subscale of driving problems was constructed with a range of 3 (least problems) to 6 (most problems). The mean score was 4.9 with a standard deviation of 2.07.

Life Effects: Work/Career

In terms of the effects of the disease on the work/career chosen and the difficulties encountered, nearly 85% of respondents felt that their symptoms had reduced their job performance and 15% had become permanently disabled by their disease.

Current employment was reported by 64.4%. Subjects reported that excessive daytime sleepiness is the most problematic symptom.

Feelings of competency in their jobs were rated on a 4-point scale from 1 (not at all) to 4 (great). The mean score was 2.7 with a standard deviation of 1.46. Their overall level of satisfaction with current job or career was rated on a 5-point scale from 1 (not satisfied) to 5 (very satisfied). The mean score was 2.9 with a standard deviation of 1.89.

Life Effects: Leisure Activities

Regular exercise was reported by 36.6% of the respondents, and 77.4% indicated that they were physically fit. A majority (70.6%) reported that their symptoms interfered with their enjoyment of recreational activities. Symptoms had caused 62.8% to give up their favorite leisure activities. A subscale of these variables was constructed with a possible range of 4 (least problems) to 8 (most problems). The mean score was 6.1 with ...

Table of contents

• Cover Page
• Half Title page
• Title Page
• Copyright Page
• Dedication
• Contents
• About the Editors
• Preface
• Acknowledgment
• Section I: Quality of Life Issues in Narcolepsy
• Section II: Learning and Cognitive Development in Persons with Narcolepsy
• Section III: Issues in the Management of Narcolepsy
• Section IV: Political and Legal Issues in Narcolepsy