Sophys L1, Sauvage C1, Duchateau J2, Remiche G3
1Université Libre de Bruxelles (U.L.B.), Hôpital Erasme, Service de Kinésithérapie, Brussels, Belgium, 2Université Libre de Bruxelles (U.L.B.), Laboratoire de Biologie Appliquée, Unité de Recherche en Neurophysiologie Appliquée, Brussels, Belgium, 3Université Libre de Bruxelles (U.L.B.), Hôpital Erasme, Centre de Référence Neuromusculaire, Service de Neurologie, Brussels, Belgium
Background: Neuromuscular diseases are "rare" diseases, with a prevalence of less than 1/2000. Nevertheless, they lead to long-term chronic disability and a have major impact on the quality of life of the patients and their family (Bos et al., 2018). Different functional scales, such as activity limitation (ACTIVLIM), measure the influence of the disease on the performance of activities of daily living (Vandervelde et al., 2007). These scales, however, do not directly assess the quality of life of patients, which is a determining factor in the patient´s perception (Peric et al., 2013).
Purpose: This work aims to examine the potential correlation between a measure of functionality,
determined by ACTIVLIM, and a quality of life questionnaire in patients with neuromuscular disease. This questionnaire is based on 36 items characterized by the following 8 dimensions : physical functioning, role limitations related to physical functioning, physical pain, general health, vitality, functioning or social well-being, mental health and role limitations related to mental health.
Methods: 100 patients aged over 18 years with neuromuscular disease participated in our prospective monocentric study. The evaluation took place during their follow-up at the Neuromuscular Reference Center (CRNM) of the Erasme-ULB hospital. During the same day, patients were assessed using a quality of life questionnaire and the ACTIVLIM functional scale.
Results: The quality of life questionnaire used allowed to highlight a quality of life globally low in the 8 dimensions tested. The ACTIVLIM score (median score of 22/36) shows the presence of significant limitations in all patients. Our results show a strong correlation between the physical component of the quality of life questionnaire and the ACTIVLIM score (p 0.0001 and r = 0.62); however, the correlation between the mental component of the quality of life questionnaire and the ACTIVLIM score is low (p = 0.002 and r = 0.31).
Conclusion(s): This study has shown that ACTIVLIM is strongly correlated with the physical component of the quality of life questionnaire, but only weakly associated with the mental dimension of the questionnaire as well as with the overall score of the questionnaire. Therefore, functional scales such as ACTIVLIM, used in the standard assessments of patients with neuromuscular disease, do not consist in a holistic assessment. Actually, it doesn't take enough into account the quality of life of patients with neuromuscular disease that have been shown to be low in this type of patients (Stojanovic et al., 2015).
Implications: In conclusion, the use of a scale specifically measuring the quality of life must be included in the standard assessments in patients with neuromuscular disease.
Keywords: quality of life, neuromuscular diseases
Funding acknowledgements: The work was unfunded.
Purpose: This work aims to examine the potential correlation between a measure of functionality,
determined by ACTIVLIM, and a quality of life questionnaire in patients with neuromuscular disease. This questionnaire is based on 36 items characterized by the following 8 dimensions : physical functioning, role limitations related to physical functioning, physical pain, general health, vitality, functioning or social well-being, mental health and role limitations related to mental health.
Methods: 100 patients aged over 18 years with neuromuscular disease participated in our prospective monocentric study. The evaluation took place during their follow-up at the Neuromuscular Reference Center (CRNM) of the Erasme-ULB hospital. During the same day, patients were assessed using a quality of life questionnaire and the ACTIVLIM functional scale.
Results: The quality of life questionnaire used allowed to highlight a quality of life globally low in the 8 dimensions tested. The ACTIVLIM score (median score of 22/36) shows the presence of significant limitations in all patients. Our results show a strong correlation between the physical component of the quality of life questionnaire and the ACTIVLIM score (p 0.0001 and r = 0.62); however, the correlation between the mental component of the quality of life questionnaire and the ACTIVLIM score is low (p = 0.002 and r = 0.31).
Conclusion(s): This study has shown that ACTIVLIM is strongly correlated with the physical component of the quality of life questionnaire, but only weakly associated with the mental dimension of the questionnaire as well as with the overall score of the questionnaire. Therefore, functional scales such as ACTIVLIM, used in the standard assessments of patients with neuromuscular disease, do not consist in a holistic assessment. Actually, it doesn't take enough into account the quality of life of patients with neuromuscular disease that have been shown to be low in this type of patients (Stojanovic et al., 2015).
Implications: In conclusion, the use of a scale specifically measuring the quality of life must be included in the standard assessments in patients with neuromuscular disease.
Keywords: quality of life, neuromuscular diseases
Funding acknowledgements: The work was unfunded.
Topic: Neurology
Ethics approval required: Yes
Institution: Hopital Erasme - Université Libre de Bruxelles (U.L.B.)
Ethics committee: Erasme-ULB
Ethics number: P2017/451
All authors, affiliations and abstracts have been published as submitted.
