Physiotherapy, physical activity & keeping warm the key
Regular physiotherapy, 3 or more physical activity sessions per week and keeping warm were identified by respondents as being the most helpful in improving spasticity.
Conversely, psychological stress and being cold made spasticity worse for most of the 325 participants in this study.
People’s expertise is of particular importance given that only functional treatments exist in HSP.
Background: Phenotypic variability is a consistent finding in neurogenetics and therefore applicable to hereditary spastic paraparesis. Identifying reasons for this variability is a challenge. We hypothesized that, in addition to genetic modifiers, extrinsic factors influence variability.
Objectives: Our aim was to describe the clinical variability in hereditary spastic paraparesis from the person’s perspective. Our goals were to identify individual and environmental factors that influence muscle tone disorders and derive interventions which could improve spasticity.
Methods: This study was based on self-assessments with questions on nominal and ordinal scales completed by participants with hereditary spastic paraparesis. A questionnaire was completed either in-person in the clinic or electronically via lay organization websites.
Results: Among the 325 responders, most had SPG4/SPAST (n = 182, 56%) with a mean age at onset of 31.7 (SD 16.7) years and a mean disease duration of 23 (SD 13.6) years at the time of participation. The 2 factors identified as improving spasticity for > 50% of the responders were physiotherapy (193/325, 59%), and superficial warming (172/308, 55%). Half of the responders (n = 164, 50%) performed physical activity at least once a month and up to once a week. Participants who reported physiotherapy as effective were significantly more satisfied with ≥ 3 sessions per week. Psychologically stressful situations (246/319, 77%) and cold temperatures (202/319, 63%) exacerbated spasticity for most participants.
Conclusion: Participants perceived that physiotherapy reduced spasticity and that the impact of physiotherapy on spasticity was much greater than other medical interventions. Therefore, people should be encouraged to practice physical activity at least 3 times per week. This study reported participants’ opinions: in hereditary spastic paraparesis only functional treatments exist, therefore the participant’s expertise is of particular importance.
SOURCE: Ann Phys Rehabil Med. 2023 Apr 5;66(6):101732. doi: 10.1016/j.rehab.2023.101732. Online ahead of print. PMID: 37028193 Copyright © 2023 Elsevier Masson SAS. All rights reserved.
Individual perception of environmental factors that influence lower limbs spasticity in inherited spastic paraparesis
Pauline Lallemant-Dudek MD 1 , Livia Parodi PhD 2 , Giulia Coarelli MD 3 , Anna Heinzmann MD 3 , Perrine Charles MD PhD 4 , Claire Ewenczyk MD, PhD 4 , Silvia Fenu MD 2 , Marie-Lorraine Monin MD 2 , Philippe Corcia MD PhD 5 , Christel Depienne PhD 6 , Fanny Mochel MD, PhD 2 , Jean Benard PhD 7 , Sophie Tezenas du Montcel MD 8 , Alexandra Durr MD, PhD 3
1. Sorbonne Université, Paris Brain Institute (ICM Institut du Cerveau), INSERM, CNRS, Assistance Publique-Hôpitaux de Paris (APHP), University Hospital Pitié-Salpêtrière, Paris, France; Sorbonne Université, Pediatric Physical Medicine and Rehabilitation Department, Hospital Armand Trousseau, Paris, France. Electronic address: [email protected].
2. Sorbonne Université, Paris Brain Institute (ICM Institut du Cerveau), INSERM, CNRS, Assistance Publique-Hôpitaux de Paris (APHP), University Hospital Pitié-Salpêtrière, Paris, France.
3. Sorbonne Université, Paris Brain Institute (ICM Institut du Cerveau), INSERM, CNRS, Assistance Publique-Hôpitaux de Paris (APHP), University Hospital Pitié-Salpêtrière, Paris, France; Sorbonne Université, Genetic Department, University Hospital Pitié-Salpêtrière, Paris, France.
4. Sorbonne Université, Genetic Department, University Hospital Pitié-Salpêtrière, Paris, France.
5. Centre SLA, University Hospital Bretonneau, Tours, France; Inserm Unit UMR U1253, iBrain, France.
6. Sorbonne Université, Paris Brain Institute (ICM Institut du Cerveau), INSERM, CNRS, Assistance Publique-Hôpitaux de Paris (APHP), University Hospital Pitié-Salpêtrière, Paris, France; Institute of Human Genetics, University Hospital Essen, University of Duisburg-Essen, Essen, Germany.
7. Association ASL-HSP France, France.
8. Sorbonne Université, Biostatistics and Medical Informatics Unit and Clinical Research Unit, University Hospital Pitié-Salpêtrière, UMR S1136, Institut Pierre Louis d’Epidémiologie et de Santé Publique, Paris, France.