Kevin Yen1, Janis M Miyasaki1, Michelle Waldron1, Lin Yu1, Tejas Sankar1, Fang Ba1. 1. Parkinson and Movement Disorders Program (KY, JMM, MW, FB), Division of Neurology, Department of Medicine, Faculty of Medicine and Dentistry, School of Public Health (LY), and Division of Neurosurgery (TS), Department of Surgery, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Canada.
Abstract
OBJECTIVE: After deep brain stimulation (DBS) for Parkinson disease (PD), patients often do not report the level of satisfaction anticipated. This misalignment can relate to patients' expectations for an invasive treatment and insufficient knowledge of DBS's effectiveness in relieving motor and nonmotor symptoms (NMS). Patient satisfaction depends on expectations and goals for treatment. We hypothesized that improving patient education with a patient-centered shared decision-making tool emphasizing autonomy would improve patient satisfaction and clinical outcome. METHODS: We developed a computer application (DBS-Edmonton app), allowing patients with PD to input their symptoms and to learn how effective DBS addresses their prioritized symptoms. Sixty-two volunteers referred for DBS used the DBS-Edmonton app. DBS-related knowledge and patient perceptions of the DBS-Edmonton app were assessed with pre- and post-use questionnaires. Fourteen of 24 patients who proceeded to DBS achieved optimization at 6 months. Perceived functional improvement was assessed and compared with 12 control patients with DBS who did not use the DBS-Edmonton app. RESULTS: All 62 volunteers considered the DBS-Edmonton app helpful and would recommend it to others. There was improved knowledge about how NMS and axial symptoms respond to DBS. Postoperatively, there was no significant difference in symptoms improvement assessed by standard scales between the groups. Volunteers who used the DBS-Edmonton app had greater satisfaction (p = 0.014). CONCLUSION: This interventional study showed that the DBS-Edmonton app improved DBS-related knowledge and patient satisfaction, independent of the objective motor outcome. It may assist patients in deciding to proceed to DBS and can be easily incorporated into practice to improve patient satisfaction post-DBS.
OBJECTIVE: After deep brain stimulation (DBS) for Parkinson disease (PD), patients often do not report the level of satisfaction anticipated. This misalignment can relate to patients' expectations for an invasive treatment and insufficient knowledge of DBS's effectiveness in relieving motor and nonmotor symptoms (NMS). Patient satisfaction depends on expectations and goals for treatment. We hypothesized that improving patient education with a patient-centered shared decision-making tool emphasizing autonomy would improve patient satisfaction and clinical outcome. METHODS: We developed a computer application (DBS-Edmonton app), allowing patients with PD to input their symptoms and to learn how effective DBS addresses their prioritized symptoms. Sixty-two volunteers referred for DBS used the DBS-Edmonton app. DBS-related knowledge and patient perceptions of the DBS-Edmonton app were assessed with pre- and post-use questionnaires. Fourteen of 24 patients who proceeded to DBS achieved optimization at 6 months. Perceived functional improvement was assessed and compared with 12 control patients with DBS who did not use the DBS-Edmonton app. RESULTS: All 62 volunteers considered the DBS-Edmonton app helpful and would recommend it to others. There was improved knowledge about how NMS and axial symptoms respond to DBS. Postoperatively, there was no significant difference in symptoms improvement assessed by standard scales between the groups. Volunteers who used the DBS-Edmonton app had greater satisfaction (p = 0.014). CONCLUSION: This interventional study showed that the DBS-Edmonton app improved DBS-related knowledge and patient satisfaction, independent of the objective motor outcome. It may assist patients in deciding to proceed to DBS and can be easily incorporated into practice to improve patient satisfaction post-DBS.
Authors: Kallol Ray Chaudhuri; Pablo Martinez-Martin; Anthony H V Schapira; Fabrizio Stocchi; Kapil Sethi; Per Odin; Richard G Brown; William Koller; Paolo Barone; Graeme MacPhee; Linda Kelly; Martin Rabey; Doug MacMahon; Sue Thomas; William Ondo; David Rye; Alison Forbes; Susanne Tluk; Vandana Dhawan; Annette Bowron; Adrian J Williams; Charles W Olanow Journal: Mov Disord Date: 2006-07 Impact factor: 10.338
Authors: Trudy van der Weijden; France Légaré; Antoine Boivin; Jako S Burgers; Haske van Veenendaal; Anne M Stiggelbout; Marjan Faber; Glyn Elwyn Journal: Implement Sci Date: 2010-02-02 Impact factor: 7.327
Authors: Nananda F Col; Andrew J Solomon; Vicky Springmann; Calvin P Garbin; Carolina Ionete; Lori Pbert; Enrique Alvarez; Brenda Tierman; Ashli Hopson; Christen Kutz; Idanis Berrios Morales; Carolyn Griffin; Glenn Phillips; Long H Ngo Journal: Med Decis Making Date: 2017-08-14 Impact factor: 2.583
Authors: Frouke A P Nijhuis; Lieneke van den Heuvel; Bastiaan R Bloem; Bart Post; Marjan J Meinders Journal: Front Neurol Date: 2019-08-16 Impact factor: 4.003