BACKGROUND: Patients with neuromuscular knee-instability assisted with orthotic devices experience problems including pain, falls, mobility issues and limited engagement in daily activities. OBJECTIVES: The aim of this study was to analyse current real-life burden, needs and orthotic device outcomes in patients in need for advanced orthotic knee-ankle-foot-orthoses (KAFOs). METHODOLOGY: An observer-based semi-structured telephone interview with orthotic care experts in Germany was applied. Interviews were transcribed and content-analysed. Quantitative questions were analysed descriptively. FINDINGS: Clinical experts from eight centres which delivered an average of 49.9 KAFOs per year and 13.3 microprocessor-stance-and-swing-phase-controlled-knee-ankle-foot orthoses (MP-SSCOs) since product availability participated. Reported underlying conditions comprised incomplete paraplegia (18%), peripheral nerve lesions (20%), poliomyelitis (41%), post-traumatic lesions (8%) and other disorders (13%). The leading observed patient burdens were “restriction of mobility” (n=6), followed by “emotional strain” (n=5) and “impaired gait pattern” (n=4). Corresponding results for potential patient benefits were seen in “improved quality-of-life” (n=8) as well as “improved gait pattern” (n=8) followed by “high reliability of the orthosis” (n=7). In total, experts reported falls occurring in 71.5% of patients at a combined annual frequency of 7.0 fall events per year when using KAFOs or stance control orthoses (SCOs). In contrast, falls were observed in only 7.2 % of MP-SSCO users. CONCLUSION: Advanced orthotic technology might contribute to better quality of life of patients, improved gait pattern and perceived reliability of orthosis. In terms of safety a substantial decrease in frequency of falls was observed when comparing KAFO and MP-SSCO users. Layman's Abstract Patients who are not able to control the muscles of their legs may need to wear a brace to improve their ability to walk. However, some users are reporting problems including pain, falls, mobility issues and limited engagement in daily activities. The aim of this study was to analyse current real-life burden, needs and experiences of patients who need to wear a brace for their knee, ankle and foot (KAFO). Therefor, experts were interviewed via telephone with a structured set of questions. Eight experts provided observations for patients who suffered from several diseases affecting leg muscle control. The leading patient burdens were identified as “restriction of mobility”, followed by “emotional strain” and “impaired way of walking”. Potential patient benefits were seen in “improved quality-of-life” as well as “improved way of walking” followed by a “high trust in the brace”. Experts reported a higher number of falls per year when using KAFO without the active control of a microprocessor. On a long-term basis, experts observed consequences of KAFO use as disorders of the back, reduced amount of muscles as well as swelling in areas not covered by the brace, scrub marks and degenerative impact on joints. Braces with active control of a microprocessor might result in better quality of life of patients, improved normal way of walking and perceived trust in the brace. Article PDF Link: https://jps.library.utoronto.ca/index.php/cpoj/article/view/37795/29114 How To Cite: Brüggenjürgen B., Braatz F., Greitemann B., Drewitz H., Ruetz A., Schäfer M., et al. Experts’ perceived patient burden and outcomes of knee-ankle-foot-orthoses (KAFOs) vs. microprocessor-stance-and-swing-phase-controlled-knee-ankle-foot orthoses (MP-SSCOs). Canadian Prosthetics & Orthotics Journal. 2022; Volume 5, Issue 1, No.7.https://doi.org/10.33137/cpoj.v5i1.37795 Corresponding Author: Prof. Dr. med. Bernd Brüggenjürgen,Head Institute Health Services Research and Technical Orthopedics, Orthopedic Department - Medical School Hannover (MHH) at DIAKOVERE Annastift Hospital, Anna-von-Borries-Str. 1-7, 30625 Hannover, Germany. E-Mail:brueggenjuergen.bernd@mh-hannover.de ORCID ID:https://orcid.org/0000-0002-8866-0809
ZUSAMMENFASSUNGSeit mehreren Jahrzehnten ist bekannt, dass die immer noch in Deutschland lebenden Betroffen der Poliomyelitis acuta anterior durch den erlittenen Alpha-Motoneuron-Schaden sowohl an motorischen Störungen in Form von Paresen und Plegien und Gebrauchsstörungen von Rumpf und Extremitäten sowie Atemmuskulatur leiden, es aber auch unter der Diagnose Post-Polio-Syndrom (ICD G14) eine neuromuskuläre Zweiterkrankung nach inzwischen klaren Definitionen gibt, die interdisziplinär mit Kompetenz in neuromuskulärer Evaluation und Therapie und mit neuem Verständnis des degenerativen Overuse-Modells für Motoneurone behandelt werden muss. Die notwendigen Assessment-Tools werden dargestellt, mit denen das Restleistungsvermögen bestimmt wird, die therapeutischen Konzepte beschrieben, die sowohl die Gebiete Physiotherapie, Beatmungsmedizin, Schmerztherapie, Unfallversorgung als auch die Orthopädietechnik betreffen. Die Krankheitsbilder müssen stadiengerecht behandelt werden, die Fehleinschätzung der Restleistungsfähigkeit führt häufig zu unnötigen Invalidisierungen, da die Fallhäufigkeit selten ist und nicht zu Diagnostik- und Therapiesicherheit führt.
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