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The Impact of Narcolepsy and Its Treatment – A European Study
(44.8%), personal time (37.3%), ability to travel (37.3%) and relationship
Table 1: Perception by Partner/Friend of the Impact of
with partner (35.8%).
Symptoms on the Patient and Him/Herself
The partners/friends recognised the problems of daytime sleepiness,
Perceived Impact on Impact on Partner’s/
Narcolepsy Symptoms Patient’s Day (%) Friend’s Day (%)
concentration and mood/morale experienced by the patient (see
Increased feeling of daytime sleepiness 76.1 31.3
Table 1). The partners/friends did not experience these symptoms
Have difficulty concentrating or focusing
themselves to the same degree, although 46.3% stated that they
on details/tasks or problems with memory 64.2 28.4
experienced negative mood/morale, 31.3% reported increased Negative impact on mood/morale 59.7 46.3
feelings of daytime sleepiness and 28.4% reported a loss of
Ability or willingness to
concentration (see Table 1).
undertake physical tasks 50.7 13.4
Negative impact on work 26.9 7.5
Does not affect the day 4.5 13.4
Patient, Partner/Friend and Physician
Other 7.5 1.5
Comparative Assessment
The frequency of the symptoms experienced by patients with narcolepsy
was assessed independently by the patient, partner/friend and physician
Figure 4: Frequency of Narcolepsy with Cataplexy Symptoms
Reported by the Patient, Partner/Friend and Physician
(see Figure 4). Significant differences in the frequency of symptoms
observed were reported between: the patient and partner/friend for
Excessive daytime
cataplexy (p<0.01); the patient and physician for cataplexy (p<0.05),
sleepiness
mood disorders (p<0.01) and sleep paralysis (p<0.01); and the
Cataplexy
partner/friend and physician for mood disorder (p<0.05), microsleep
Trouble staying
asleep at night
(p<0.05) and trouble getting to sleep (p<0.05).
Mood disorders
Microsleep
The impact of the symptoms on the patient’s quality of life was also
reported separately by the patient, partner/friend and physician.
Hallucination
Patient
Significant differences were identified between: the patient and Sleep paralysis
Physician
partner/friend for mood disorders (p<0.05), microsleep (p<0.01), Trouble getting to Partner/friend
sleep at bedtime
trouble getting to sleep (p<0.01), trouble staying asleep (p<0.01),
0 10 20 30 40 50 60 70 80 90 100
cataplexy (p<0.01) and hallucination (p<0.05); the patient and
Percentage indicating frequency at least monthly
physician for EDS (p<0.05), mood disorders (p<0.001), microsleep
(p<0.05), trouble getting to sleep (p<0.01), trouble staying asleep treatment. No control group was included. Although 66% of patients
(p<0.001), cataplexy (p<0.01), sleep paralysis (p<0.001) and were at least satisfied with their current medication, EDS continued to
hallucination (p<0.001); and the partner/friend and physician for cause frequent symptoms, impaired quality of life with significant
mood disorders (p<0.01) and sleep paralysis (p<0.01). impact on day-to-day activities and frequent accidents, particularly road
traffic accidents.
A three-point difference in the 10-point weighting scale used in this
questionnaire was taken as clinically important, allowing for up to 1 SD. The least well-controlled symptoms were EDS and cataplexy, which are
The percentage of physicians and partners/friends who ranked the main targets of current treatments, with other conventionally
the symptom impact on the patient’s quality of life differently from the recognised symptoms occurring frequently, including difficulties with
patient is shown in Table 2. sleep and mood disorders.
12–14
These high frequencies of EDS and
cataplexy contrast with the high level of satisfaction recorded by
For every symptom the physicians were more likely to underestimate patients for their treatments.
13
These findings raise the possibility that
than overestimate the impact on the patient’s quality of life, particularly the patient’s satisfaction with his/her treatment may reflect his/her
for trouble getting to sleep, trouble staying asleep and mood disorder. overall experience of the broad range of symptoms rather than a
The differences between the partner and the patient were statistically judgement relating to EDS and cataplexy. They also indicate that a
smaller than the differences between the physician and the patient, but substantial unmet need still exists in this patient population and that
for every symptom the partners also underestimated the impact relative patients, and possibly their physicians, have a low expectation of
to the patient. success in symptom control.
Discussion The impact of symptoms on patient quality of life is demonstrated by the
This study was designed to assess how effectively patients suffering from SF-36, where all domains were scored significantly lower than the US
narcolepsy with cataplexy are managed with currently available norms (p<0.001; p<0.05 for role emotional); this effect increased with
treatments and to determine the continuing impact of the symptoms on the severity of the symptoms, as measured by the UNS.
10
the patients and those closest to them. The views of patients were also
compared with those of their partner or close friend and their treating Other more qualitative measures captured the negative day-to-day
physician to understand ways in which care might be further improved. effects of the symptoms, with 84% of patients reporting a negative
impact. The negative effects included the avoidance of social or
The 18 participating European sleep centres identified 67 patients using sporting events and the strain that symptoms place on relationships
agreed diagnostic criteria, all of whom were receiving standard and family/home life. These qualitative measures correlate with the
EUROPEAN NEUROLOGICAL REVIEW 107
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