Date Presented 03/22/24
Ehlers-Danlos syndrome, hypermobility type, is a chronic connective tissue disorder that leads to painful joint subluxation and adversely affects mental health. A case report highlights a novel occupation-based approach with favorable outcomes.
Primary Author and Speaker: Jamie L. Bergner
Contributing Authors: Meagan N. Cummins
PURPOSE: The purpose of this study is to report outcomes of a client with Ehlers-Danlos Syndrome, hypermobility type (EDS-h) using a novel occupation-based approach. EDS-h is a chronic connective tissue disorder that causes painful joint subluxation and is linked to mental health conditions. Research supports Proprioceptive-Neuromuscular Control Ligament Rehabilitation Programs (PLRP) to effectively rehabilitate ligaments via sequential, reflexive sensorimotor control training but may not comprehensively restore participation. Occupational Adaptation (OA) takes a holistic view by problem-solving with the client to achieve a state of mastery. A combination of OA and PLRP approaches has yet to be reported.
DESIGN: A retrospective case report of a 22-year-old female referred to OT with bilateral hand pain, weakness, hypermobility, and self-reported difficulty with work and leisure participation.
METHOD: Outcomes were extracted from the record. The Upper Limb Functional Index (ULFI) measures function and has excellent reliability (test-retest ICC = 0.96, MCID of 7.9%, 0%=no impairment). Numeric Pain Rating Scale (NPS) scores and maximum, 3-trial average grip strength dynamometer readings are reported. Interventions are classified by type/visit and selected to meet the client’s goals of typing, writing, and completing origami. PLRP followed sequential afferent/efferent exercises to improve reflexive neuromuscular control.
RESULTS: ULFI scores improved 16% spanning 6 weeks and 5 OT visits. Grip strength increased 15 pounds on the right and 5.6 pounds on the left from visits 2-6. NPS improved from 5/10 to 0/10 and the client reported no hand pain after a day of work at visit 6.
CONCLUSION/IMPACT: Combining an OA model with PLRP improves function, pain, and grip strength in short-term follow-up in a client with EDS-h. This study calls for further investigation of the outcomes of OA/PLRP use with clients with chronic conditions seen in OT/hand therapy.
References
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Valdes, K., & Rider, J. V. (2023). Proprioception evaluation and treatment: Hand therapist practice patterns. Journal of Hand Therapy, S0894-1130(23)00136-9. https://doi10.1016/j.jht.2023.09.007
Dépelteau, A., Lagueux, é., Pagé, R., & Hudon, C. (2021). Occupational adaptation of people living with fibromyalgia: A systematic review and thematic synthesis. The American Journal of Occupational Therapy, 75(4). https://doi.org/10.5014/ajot.2021.047134
