Purpose: To assess content and readability of online patient educational materials (PEMs) for paediatric deep brain stimulation (DBS) and intrathecal baclofen (ITB).
Methods: A content analysis of PEMs identified from top children's hospitals, institutions affiliated with published neuromodulation research, and DBS and ITB device manufacturers was conducted. PEM content was analysed using a predetermined framework. Readability was assessed using the Simple Measure of Gobbledygook (SMOG).
Results: Of 109 PEMs (72 DBS; 37 ITB) identified, most (77 (71%)) originated in the United States. More ITB PEMs (27 (73%)) contained specific paediatric information than DBS PEMs (16 (22%)). PEMS more frequently described benefits (DBS: 92%; ITB: 89%) than risks (DBS: 49%; ITB: 78%). Frequent content included pre- and post-operative care, procedural details, and device information. Less common content included long-term lifestyle considerations, alternatives, patient experiences, and financial details. Median readability of PEMs was 13.2 (interquartile range [IQR]: 11.4-14.45) for DBS and 11.8 (IQR: 11-12.9) for ITB.
Conclusions: Available ITB and DBS PEMs often miss important broader details of the treatments, and have additional shortcomings such as poor readability scores. Our findings highlight need for more holistic content within neuromodulation PEMs, improved accessibility, and more balanced representation of risks and benefits.
Purpose: To evaluate the efficacy of an immersive movement visualization intervention in patients with hemophilia and hemophilic knee arthropathy.
Materials and methods: Randomized, single-blind clinical study. Twenty-eight patients with hemophilia were recruited. Patients were randomized to an experimental group (four weeks of immersive movement visualization) and a control group (no intervention). The intensity of pain, pressure pain threshold in the knee, tibialis anterior muscle, lower back level, conditioned pain modulation, range of knee motion, and lower limb functionality were evaluated.
Results: There were statistically significant differences in the intergroup effect on knee pain intensity (F = 23.71; p < 0.001) and lower limb functionality (F = 7.11; p = 0.003). 42.86% of the patients in the experimental group exhibited changes greater than the minimum detectable change (MDC) in functionality. 39.29% of the patients subject to the intervention experienced changes greater than the MDC in the knee pressure pain threshold.
Conclusions: Immersive motion visualization can improve the intensity of joint pain and functionality in patients with hemophilic knee arthropathy. Functionality, pressure pain threshold, and pain intensity improved in those patients who conducted immersive movement visualization.Implications for rehabilitationImmersive visualization of movement significantly improves intensity of joint pain, functionality, pressure pain threshold, joint health, and conditioned pain modulation in patients with hemophilic knee arthropathy.The fact that it is a therapy without potential aversive stimuli makes it a possible access pathway for patients with high levels of kinesiophobia and/or catastrophism.This low-cost, home-based technology allows its use in patients far from hemophilia reference centers or with difficult access to physiotherapy treatments.The immersive visualization of movement influences the democratization of treatment, in accordance with the WHO's Sustainable Development Goal 3 (health and well-being for all).