106 CHAPTER 5 activities or participation? Furthermore, we need to identify outcome measures, beside the SRQ-DLV, which address these residual complaints and their effects on activities and participation and are sensitive to change during spontaneous recovery and MR. And lastly, we need to review and optimize the content of our MR relating to the results of this RCT on the primary and secondary outcomes combined with our recent findings of cerebral (mal)adaptations after NA. 2 Strengths and limitations Due to restrictions related to the COVID-19 pandemic we were unable to include the intended 50 participants. Nevertheless we found a significant effect on our primary outcome that was retained at follow-up. Nevertheless, a lack of power might have influenced the effect on the secondary outcomes. It could be that patients think that MR is more helpful and rate it more successful than UC since it is a more intensive program . If this possible bias was present, it should emerge in all outcome measures and not only in the positive effect of our primary outcome measure. A strength of this study is the fact that the MR was executed within daily clinical practice and was customized to the participants individual needs and goals, which implies that the external validity of our results is high and their clinical implementation relatively easy. Conclusion This RCT showed that an outpatient multidisciplinary rehabilitation program focusing on improving motor control, scapular stability and coordination, combined with training selfmanagement strategies for reducing pain and fatigue, is more effective than usual care to improve shoulder, arm and hand functional capabilities in patients with NA and scapular dyskinesia. Future research should confirm our findings, focus on mechanisms of change, and address cost-effectiveness. Acknowledgements We thank our participants for their time and commitment to the study. We also thank Melissa Bakkenes, Eline van de Ven, and Elze Wolfs for their contributions to data collection; Judith Kanters, Yvonne Veenhuizen, Thomas Verheggen, Allan Pieterse and Jessica ten Broek-Pastoor for treating the patients with the rehabilitation program; Ellis Gielink-Kersten for her secretarial support; and Saskia Lassche, Fran Smulders and Juerd Wijntjes for their role in patient inclusion. The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was financially supported by the Prinses Beatrix Spierfonds [W.OR16-05]. Several authors of this publication are members of the Radboudumc Neuromuscular Center (Radboud-NMD), Netherlands Neuromuscular Center (NL-NMD) and the European Reference Network for rare neuromuscular diseases (EURO-NMD).
RkJQdWJsaXNoZXIy MjY0ODMw