Influence of Relatives on Fatigue Experienced by Patients with Facioscapulohumeral Dystrophy, Myotonic Dystrophy and HMSN-I

Abstract

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. 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. 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. 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.