Influence of Relatives on Fatigue Experienced by Patients with HMSN-I, Facioscap

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Eur Neurol. 2006 Aug 17;56(1):24-30

Influence of Relatives on Fatigue Experienced by Patients with

Facioscapulohumeral Dystrophy, Myotonic Dystrophy and HMSN-I.

Kalkman JS, Schillings ML, Zwarts MJ, van Engelen BG, Bleijenberg G.

Expert Centre Chronic Fatigue, Institute of Neurology, Radboud

University Nijmegen Medical Centre, Nijmegen, The Netherlands.

Objectives: Fatigue is a common symptom experienced by patients with

various neuromuscular disorders. The purpose of this study was to

assess the influence of relatives on fatigue experienced by patients

with various neuromuscular disorders.

Methods: In total, 106 close relatives of patients with

facioscapulohumeral dystrophy (FSHD), adult-onset myotonic dystrophy

(MD), and hereditary motor and sensory neuropathy type I (HMSN),

completed the Checklist Individual Strength for themselves, and how

they thought their relatives filled in this questionnaire. We

compared the agreement between the two. The reaction of the relative

to the fatigue and to the neuromuscular disorder of the patient was

assessed by the Family Response Questionnaire. Marital

dissatisfaction was also measured. The influence of the relative's

response to the patients' fatigue and the relatives' fatigue on the

fatigue of the patient was tested in linear regression models.

Results: In all 3 patient groups, the responses of the relatives to

fatigue and disease were characterized by sympathetic-empathic

responses. Low agreement existed between relatives and MD patients (r

= 0.26) over the patients' level of fatigue, but higher agreement was

found between relatives and FSHD (r = 0.67) and HMSN (r = 0.73)

patients. The spouses of MD patients reported less marital

satisfaction. The sympathetic-empathic responses of the relatives of

FSHD and HMSN patients, and in FSHD also the fatigue experienced by

the relative, contributed significantly to higher levels of fatigue

experienced by the patients.

Conclusion: The sympathetic-empathic responses of close relatives to

the fatigue of the patient were related to the higher levels of

fatigue experienced by FSHD and HMSN patients, but not MD patients.