Being Seen: Co-Interpreting Parkinson's Patient's Movement Ability in Deep Brain Stimulation Programming

The purpose of this study is to address the use of movement assessment sensors for clinical diagnosis and treatment. Eleven patients with Parkinson's disease who had under-gone deep brain stimulation (DBS) surgery were observed during follow-up appointments for adjustments to the stimulation settings. We examine the ways in which the patients and clinicians assess movement ability together in the clinic and how these assessments relate to the treatment of functional disability through DBS. We have found that effective assessment of movement and treatment efficacy is a collaborative and interpretive process (co-interpretation) that relies on input from patients, clinicians, and caregivers. From these findings we describe the design directions for movement sensors to support co-interpretation of movement in a clinical context as opposed to simply movement definition.

[1]  B. Kaplan,et al.  Objectification and negotiation in interpreting clinical images: implications for computer-based patient records , 1995, Artif. Intell. Medicine.

[2]  Jeffrey M. Hausdorff,et al.  Can an accelerometer enhance the utility of the Timed Up & Go Test when evaluating patients with Parkinson's disease? , 2010, Medical engineering & physics.

[3]  W. Weiner,et al.  The evolution of disability in Parkinson disease , 2008, Movement disorders : official journal of the Movement Disorder Society.

[4]  Laura Rocchi,et al.  Postural strategies assessed with inertial sensors in healthy and parkinsonian subjects. , 2014, Gait & posture.

[5]  J. Ghika,et al.  Portable system for quantifying motor abnormalities in Parkinson's disease , 1993, IEEE Transactions on Biomedical Engineering.

[6]  A. Mol The Body Multiple: Ontology in Medical Practice , 2003 .

[7]  Jeffrey M. Hausdorff,et al.  Objective Assessment of Fall Risk in Parkinson's Disease Using a Body-Fixed Sensor Worn for 3 Days , 2014, PloS one.

[8]  Helena M. Mentis,et al.  Imaging the body: embodied vision in minimally invasive surgery , 2013, CHI.

[9]  Morana Alac,et al.  Working with Brain Scans , 2008, Social studies of science.

[10]  W. Weiner,et al.  Does spouse participation influence quality of life reporting in patients with Parkinson’s disease? , 2014, Quality of Life Research.

[11]  Stefan Hirschauer,et al.  The Manufacture of Bodies in Surgery , 1991 .

[12]  Leslie S. Liu,et al.  Improving communication and social support for caregivers of high-risk infants through mobile technologies , 2011, CSCW.

[13]  Kailash P Bhatia,et al.  Believing is perceiving: mismatch between self-report and actigraphy in psychogenic tremor. , 2012, Brain : a journal of neurology.

[14]  Kelly Joyce,et al.  Appealing Images , 2005 .

[15]  J Dichgans,et al.  Reliability, specificity and sensitivity of long-term tremor recordings. , 1995, Electroencephalography and clinical neurophysiology.

[16]  Wanda Pratt,et al.  Personal health information management , 2006, CACM.

[17]  C D Marsden,et al.  Accuracy of self-reported disability in patients with parkinsonism. , 1989, Archives of neurology.

[18]  Paolo Bonato,et al.  Monitoring Motor Fluctuations in Patients With Parkinson's Disease Using Wearable Sensors , 2009, IEEE Transactions on Information Technology in Biomedicine.

[19]  J. Fahrenberg,et al.  Tremor in Parkinson's disease: 24-hr monitoring with calibrated accelerometry. , 2004, Electromyography and clinical neurophysiology.

[20]  Gillian R. Hayes,et al.  Disability studies as a source of critical inquiry for the field of assistive technology , 2010, ASSETS '10.

[21]  I. Higginson,et al.  Where do cancer patients die? Ten-year trends in the place of death of cancer patients in England , 1998, Palliative medicine.

[22]  P. Bonato,et al.  Data mining techniques to detect motor fluctuations in Parkinson's disease , 2004, The 26th Annual International Conference of the IEEE Engineering in Medicine and Biology Society.

[23]  Ran Gilad-Bachrach,et al.  Full body gait analysis with Kinect , 2012, 2012 Annual International Conference of the IEEE Engineering in Medicine and Biology Society.

[24]  Russell Shuttleworth,et al.  What's so ‘critical’ about critical disability studies? , 2009 .

[25]  Sean Pearson,et al.  Continuous Monitoring of Turning in Patients with Movement Disability , 2013, Sensors.

[26]  Yunan Chen Health information use in chronic care cycles , 2011, CSCW '11.

[27]  Amit Prasad,et al.  Making Images/Making Bodies: Visibilizing and Disciplining through Magnetic Resonance Imaging (MRI) , 2005 .

[28]  Elizabeth D. Mynatt,et al.  Interpreting Health and Wellness Information , 2009 .

[29]  A. Prochazka,et al.  Quantification of the UPDRS rigidity scale , 2001, IEEE Transactions on Neural Systems and Rehabilitation Engineering.

[30]  David Parry,et al.  Auto-Identification and Ubiquitous Computing Applications , 2009 .

[31]  J. J. van Hilten,et al.  Accelerometric assessment of levodopa‐induced dyskinesias in Parkinson's disease , 2001, Movement disorders : official journal of the Movement Disorder Society.

[32]  Chul-Seung Kim,et al.  Quantification of bradykinesia during clinical finger taps using a gyrosensor in patients with Parkinson’s disease , 2011, Medical & Biological Engineering & Computing.

[33]  Martina Mancini,et al.  Objective biomarkers of balance and gait for Parkinson's disease using body‐worn sensors , 2013, Movement disorders : official journal of the Movement Disorder Society.

[34]  Michael D. Coovert,et al.  Hey doc, is that your stethoscope?: increasing engagement in medical education and training with iPads , 2012, CSCW.

[35]  Stan C A M Gielen,et al.  Ambulatory motor assessment in Parkinson's disease , 2006, Movement disorders : official journal of the Movement Disorder Society.

[36]  K. Ashkan,et al.  Patients' expectations in subthalamic nucleus deep brain stimulation surgery for Parkinson disease. , 2014, World neurosurgery.

[37]  Rebecca E. Grinter,et al.  Characteristics of shared health reflections in a local community , 2010, CSCW '10.

[38]  C. Gielen,et al.  Detection and assessment of the severity of Levodopa‐induced dyskinesia in patients with Parkinson's disease by neural networks , 2000, Movement disorders : official journal of the Movement Disorder Society.

[39]  Jeana Frost,et al.  Visualizing health practice to treat diabetes , 2002, CHI Extended Abstracts.