University of Plymouth PEARL https://pearl.plymouth.ac.uk 04 University of Plymouth Research Theses 01 Research Theses Main Collection 2019 Evaluating Digital Health Technologies to Advance Parkinson's Disease Care Dominey, Thea http://hdl.handle.net/10026.1/15158 University of Plymouth All content in PEARL is protected by copyright law. Author manuscripts are made available in accordance with publisher policies. Please cite only the published version using the details provided on the item record or document. In the absence of an open licence (e.g. Creative Commons), permissions for further reuse of content should be sought from the publisher or author. EVALUATING DIGITAL HEALTH TECHNOLOGIES TO ADVANCE PARKINSON’S DISEASE CARE by THEA DOMINEY A thesis submitted to the University of Plymouth in partial fulfilment for the degree of DOCTOR OF PHILOSOPHY School of Psychology JUNE 2019 Copyright Statement This copy of the thesis has been supplied on condition that anyone who consults it is understood to recognise that its copyright rests with its author and that no quotation from the thesis and no information derived from it may be published with the author’s prior consent. 2 Acknowledgements I would like to express sincere thanks to everyone who has been involved with this research. Firstly, I would like to thank my supervisor Dr Camille Carroll, for her guidance, knowledge, patience, support, and for all the time given to help me achieve this - I am so very grateful for everything, thank you Camille. Thanks goes to the UHPNT Parkinson’s Clinical Team and Applied Parkinson’s Research Group for all of their support in carrying out this research. Thank you to Dr Stephen Hall for giving me this opportunity, and for his guidance and advice. Thank you to Dr Chris Longmore for his knowledge and assistance, and thank you to Dr Rupert Noad and Dr Craig Newman for their knowledge. Thank you to the School of Psychology Tech Office for their help and support in developing the computerised tapping task used in Chapter Two. Thank you also to Sue Buff and Professor Karen Raphael for their involvement in carrying out the systematic review of PD neuroprotective trials described in Chapter Five. I would like to express my sincere gratitude to all the patient representatives who gave their time and effort to participate in this research. A special thanks to Sue and John Whipps, who have always offered so much support over the years. The time and effort you dedicate to the Parkinson’s community is truly remarkable, and you are so appreciated by so many. Thank you. I would like to thank my friends for all their patience and support. Thank you Grace for being the best housemate and friend through all of this, thank you Lucy for always being there and for always being so supportive. Thank you Kat, Sophie and Tina for being the best friends to have gone through this experience with. Sam and Sara thank you for being so understanding and always so supportive – it means so much. 3 Finally I would like to thank my amazing family – Mum, Dad, Danielle and my wonderful boyfriend James - I am so grateful for all of your encourgament, love, never-ending patience and enormous support. Thank you for always believing I could do this. I cannot thank you enough and I am so very grateful. Thank you. 4 Author’s Declaration At no time during the registration for the degree of Doctor of Philosophy has the author been registered for any other University award without prior agreement of the Doctoral College Quality Sub-Committee. Work submitted for this research degree at the University of Plymouth has not formed part of any other degree either at the University of Plymouth or at another establishment. Publications Dominey, T., Carroll, C., Noad, R., Newman, C., & Hall, S. (2017). Validation of computerised measures of executive functioning for use in Parkinson’s disease assessments. Movement Disorders, 32 (2), 954, [conference abstract] DOI: https://doi.org/10.1002/mds.27087 Hutchinson, L., Dominey, T., Pearson, E., Murphy, F., Bell, L., & Carroll, C. (2018). Evaluating the clinical utility of the Parkinson’s Kinetigraph (PKGTM). Journal of Neurology Neurosurgery & Psychiatry, 89 (10) A15, [conference abstract] DOI: http://dx.doi.org/10.1136/jnnp-2018-ABN.54 Dominey, T., & Carroll, C. (2018). Using remotely collected data to identify Parkinson’s disease (PD) subtypes. Movement Disorders, 33 (2), 1016, [conference abstract] DOI: https://doi.org/10.1002/mds.116 5 Dominey, T., Hutchinson, L., Pearson, E., Murphy, F., Bell, L., & Carroll, C. (2018). Evaluating the clinical utility of the Parkinson’s KinetiGraph (PKG™) in the remote management of Parkinson’s disease. Movement Disorders, 33 (2), 1145, [conference abstract] DOI: https://doi.org/10.1002/mds.116 Dominey, T., Mullin, S., Edwards, E., Whipps, J., Whipps, S., & Carroll, C. (2019). Usability testing of a non-motor symptom app in PD. Journal of Neurology Neurosurgery & Psychiatry, [conference abstract, in press] Oral Presentations at conferences The clinical utility of The Parkinson's KinetiGraph (PKG) in disease management, Annual Research Event (ARE) for Postgraduate Research 2018, Plymouth Guildhall, March 2018. Other achievements - International Congress Travel Grant Award to participate in the International Congress of Parkinson’s Disease and Movement Disorders, June 4-8, 2017, Vancouver. - International Congress Travel Grant Award to participate in the International Congress of Parkinson’s Disease and Movement Disorders, October 5-9, 2018, Hong Kong. - The Brilliant Club Scholars Programme, 2017 6 Funding Received I received a studentship from the University of Plymouth for a total of three years. This studentship was used to pay my tuition fees (£4,150 p.a. plus a bench fee of £750 p.a.) and I also received a maintenance grant of £14,057 p.a. included as a part of the studentship (three years duration). The development of NMS Assist described in Chapter Three received funding from NHS Charitable Funds (£25,000) and The Hoover Foundation (£25,000). These funds also supported patient travel expenses for the usability study. The clinical service evaluation of the Parkinson’s Kinetigraph (PKGTM, Global Kinetics Coorporation) described in Chapter Four did not receive any funding. Global Kinetics Coorporation provided £800 towards travel costs for my travel to the MDS International Conference, Hong Kong, 2018. Word count of main body of thesis: 66,908 words Signed: Date: 11th October 2019 7 Abstract Evaluating Digital Health Technologies to Advance Parkinson’s Disease Care Thea Dominey Parkinson’s disease (PD) is a common progressive neurological disorder characterised by a complex range of motor and non-motor symptoms (NMS). Current PD service provision does not meet the needs of patients, and puts pressure on services with limited capacity. Digital Health Technologies (DHTs), including body-worn sensors and portable devices, may provide advantages, by enabling continual and objective monitoring of symptoms, and facilitating patient self-management. I carried out a series of studies and evaluations of DHTs for use in PD, to evaluate their ability to identify and monitor symptoms in both a clinical and research context. These included: 1. The evaluation of a computerised paced finger tapping task (PFT) that was found to correlate with a measure of verbal fluency, suggesting there may be potential to implement the PFT as part of a wider finger tapping battery to be used as a screening tool for PD executive dysfunction. 2. The iterative, user-centred design and formative evaluation of NMS Assist, a smartphone-based app to enable regular assessment of NMS as well as provide education for patients. The app was found to be highly usable, and key areas of amendment were identified. 8 3. A clinical service evaluation of the PKGTM, a PD remote monitoring device. The findings revealed the PKGTM is useful for identifying patients with unmet treatment need, even in newly diagnosed people with Parkinson’s (PwP) who experience more frequent clinic review. 4. A systematic review of neuroprotective trial design in PD. The results demonstrated a wide range of primary outcome measures is used across trials, and there is little evidence of patient stratification. The findings highlighted the potential for DHTs to improve various aspects of clinical trial design. I discuss the potential value of DHTs, as well as challenges associated with their use, identified as a result of this research. 298 words 9 List of Contents Chapter 1 Overview of Thesis and General Introduction ..................................................................... 23 1.1 Overview of Thesis .................................................................................................................... 23 1.2 General Introduction ................................................................................................................. 24 Chapter 2 Exploring the potential of an automated tapping assessment in Parkinson’s disease ...... 107 2.1 Introduction .................................................................................................................................. 107 2.2 Methods ........................................................................................................................................ 116 2.3 Results ........................................................................................................................................... 126 2.4 Discussion .....................................................................................................................................