Sonali R. Mishra
ABSTRACT
Self-tracking can help people understand their medical condition and the factors that influence their symptoms. However, it is unclear how tracking technologies should be tailored to help people cope with the progression of a degenerative disease. To understand how smartphone apps and other tracking technologies can support people in coping with an incurable illness, we interviewed both people with Parkinson's Disease (n=17) and care partners (n=6) who help people with Parkinson's manage their lives. We describe how symptom trackers can help people identify and solve problems to improve their quality of life, the role symptom trackers can play in helping people combat their own tendencies towards avoidance and denial, and the complex role of care partners in defining and tracking ambiguous symptoms. Our findings yield insights that can guide the design of tracking technologies to help people with Parkinson's Disease accept and plan for their condition.
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- Jessica S. Ancker, Holly O. Witteman, Baria Hafeez, Thierry Provencher, Mary Van De Graaf, and Esther Wei. 2015. "You get reminded you're a sick person": Personal data tracking and patients with multiple chronic conditions. Journal of Medical Internet Research 17, 8 (2015).Google Scholar
Cross Ref
- Siddharth Arora, Vinayak Venkataraman, Andong Zhan, S. Donohue, K. M. Biglan, E. Ray Dorsey, and M. A. Little. 2015. Detecting and monitoring the symptoms of Parkinson's disease using smartphones: A pilot study. Parkinsonism and Related Disorders 21 (2015), 650--653.Google ScholarCross Ref
- Amid Ayobi, Paul Marshall, Anna Cox, and Yunan Chen. 2017. Quantifying the body and caring for the mind: Understanding self-tracking in multiple sclerosis. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17). ACM, New York, NY, USA, 6889--6901. Google ScholarDigital Library
- Jakob E. Bardram, Mads Frost, Károly Szántó, and Gabriela Marcu. 2012. The MONARCA self-assessment system. In Proceedings of the 2nd ACM SIGHIT symposium on International health informatics - IHI '12. 21. Google ScholarDigital Library
- Frank Bentley, Konrad Tollmar, Peter Stephenson, Laura Levy, Brian Jones, Scott Robertson, Ed Price, Richard Catrambone, and Jeff Wilson. 2013. Health Mashups: Presenting Statistical Patterns between Supporting Coping with Parkinson's Disease Through Self-Tracking CHI 2019, May 4--9, 2019, Glasgow, Scotland UK Wellbeing Data and Context in Natural Language to Promote Behavior Change. ACM Transactions on Computer-Human Interaction 20, 5 (2013), 1--27. Google ScholarDigital Library
- Andrew B. L. Berry, Catherine Lim, Andrea L. Hartzler, Tad Hirsch, Edward H. Wagner, Evette Ludman, and James D. Ralston. 2017. How Values Shape Collaboration Between Patients with Multiple Chronic Conditions and Spousal Caregivers. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems - CHI '17. 5257-- 5270. Google ScholarDigital Library
- S. Bostantjopoulou, Zoe Katsarou, C. Karakasis, E. Peitsidou, D. Milioni, and N. Rossopoulos. 2013. Evaluation of non-motor symptoms in Parkinson's Disease: An underestimated necessity. Hippokratia 17, 3 (2013), 214--219.Google Scholar
- R. S. Bucks, K. E. Cruise, T. C. Skinner, A. M. Loftus, R. A. Barker, and M. G. Thomas. 2011. Coping processes and health-related quality of life in Parkinson's disease. International Journal of Geriatric Psychiatry 26, 3 (2011), 247--255.Google ScholarCross Ref
- K. Ray Chaudhuri, Per Odin, Angelo Antonini, and Pablo MartinezMartin. 2011. Parkinson's disease: The non-motor issues. Parkinsonism and Related Disorders 17, 10 (2011), 717--723.Google ScholarCross Ref
- Eun Kyoung Choe, Bongshin Lee, Sean Munson, Wanda Pratt, and Julie A Kientz. 2013. Persuasive performance feedback: the effect of framing on self-efficacy.. In American Medical Informatics Association Annual Symposium proceedings, Vol. 2013. 825-- 33. http://www.ncbi.nlm.nih.gov/pubmed/24551378{%}5Cnhttp:// www.pubmedcentral.nih.gov/articlerender.fcgi?artid=PMC3900219Google Scholar
- Eun Kyoung Choe, Nicole B. Lee, Bongshin Lee, Wanda Pratt, and Julie A. Kientz. 2014. Understanding quantified-selfers' practices in collecting and exploring personal data. In Proceedings of the 32nd annual ACM conference on Human factors in computing systems (CHI '14). ACM, New York, NY, USA, 1143--1152. Google ScholarDigital Library
- Kelvin L. Chou. 2018. Clinical Manifestations of Parkinson Disease. In UpToDate, Howard I. Hurtig and April F. Eichler (Eds.). Wolters Kluwer, Waltham, MA.Google Scholar
- Chia-Fang Chung, Elena Agapie, Jessica Schroeder, Sonali R. Mishra, James Fogarty, and Sean A Munson. 2017. When personal tracking becomes social: Examining the use of Instagram for healthy eating. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17). ACM, New York, NY, USA, 1674--1687. Google ScholarDigital Library
- Chia-Fang Chung, Kristin Dew, Allison Cole, Jasmine Zia, James Fogarty, Julie A. Kientz, and Sean A. Munson. 2016. Boundary negotiating artifacts in personal informatics: Patient-provider collaboration with Patient-generated data. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (CSCW '16). ACM, New York, NY, USA, 770--786. Google ScholarDigital Library
- Juliet Corbin and Anselm Strauss. 1990. Grounded Theory Research: Procedures, Canons and Evaluative Criteria. Qualitative Sociology 13, 1 (1990), 3--21.Google ScholarCross Ref
- Felicia Cordeiro, Elizabeth Bales, Erin Cherry, and James Fogarty. 2015. Rethinking the Mobile Food Journal. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems - CHI '15. 3207--3216. Google ScholarDigital Library
- Ana Correia de Barros, João Cevada, Àngels Bayés, Sheila Alcaine, and Berta Mestre. 2013. User-centred Design of a Mobile Self-management Solution for Parkinson's Disease. In International Conference on Mobile and Ubiquitous Multimedia (MUM). 23:1--23:10. Google ScholarDigital Library
- Daniel A. Epstein, Nicole B. Lee, Jennifer H. Kang, Elena Agapie, Jessica Schroeder, Laura R. Pina, James Fogarty, Julie A. Kientz, and Sean A. Munson. 2017. Examining Menstrual Tracking to Inform the Design of Personal Informatics Tools. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI 2017). ACM, New York, NY, USA. Google ScholarDigital Library
- Sergio Felipe, Aneesha Singh, Caroline Bradley, Amanda Cdec Williams, and Nadia Bianchi-Berthouze. 2015. Roles for personal informatics in chronic pain. In 9th International Conference on Pervasive Computing Technologies for Healthcare. 161--168. Google ScholarDigital Library
- S Folkman and R S Lazarus. 1985. If it changes it must be a process. Journal of personality and social psychology 48, 1 (1985), 150--170.Google ScholarCross Ref
- Susan Folkman and Richard S. Lazarus. 1988. The ways of coping questionnaire: Manual, Instrument, Scoring Guide. Consulting Psychologists Press, Inc.Google Scholar
- Leslie D. Frazier. 2002. Stability and Change in Patterns of Coping with Parkinson's Disease. The international journal of aging and human development 55, 3 (2002), 207--231.Google Scholar
- Brook Galna, Dan Jackson, Guy Schofield, Roisin McNaney, Mary Webster, Gillian Barry, Dadirayi Mhiripiri, Madeline Balaam, Patrick Olivier, and Lynn Rochester. 2014. Retraining function in people with Parkinson's disease using the Microsoft kinect: Game design and pilot testing. Journal of NeuroEngineering and Rehabilitation 11, 1 (2014), no pagination.Google ScholarCross Ref
- Christopher G. Goetz, Stanley Fahn, Pablo Martinez-Martin, Werner Poewe, Cristina Sampaio, Glenn T. Stebbins, Matthew B. Stern, Barbara C. Tilley, Richard Dodel, Bruno Dubois, Robert Holloway, Joseph Jankovic, Jaime Kulisevsky, Anthony E. Lang, Andrew Lees, Sue Leurgans, Peter A. LeWitt, David Nyenhuis, C. Warren Olanow, Olivier Rascol, Anette Schrag, Jeanne A. Teresi, Jacobus J. Van Hilten, and Nancy LaPelle. 2007. Movement disorder society-sponsored revision of the unified Parkinson's disease rating scale (MDS-UPDRS): Process, format, and clinimetric testing plan. Movement Disorders 22, 1 (2007), 41--47.Google ScholarCross Ref
- A. M. Gotham, R. G. Brown, and C. D. Marsden. 1986. Depression in Parkinson's disease: A quantitative and qualitative analysis. Journal of Neurology Neurosurgery and Psychiatry 49, 4 (1986), 381--389.Google ScholarCross Ref
- Lisa Graham, Anthony Tang, and Carman Neustaedter. 2016. Help me help you: Shared reflection for personal data. In Proceedings of the 19th International Conference on Supporting Group Work (GROUP '16). ACM, New York, NY, USA, 99--109. arXiv:arXiv:1011.1669v3 Google ScholarDigital Library
- K. Grandez, P. Bustamante, G. Solas, I. Gurutzeaga, and A. GarcíaAlonso. 2009. Wearable wireless sensor for the gait monitorization of Parkinsonian patients. In 2009 16th IEEE International Conference on Electronics, Circuits and Systems, ICECS 2009. 215--218.Google Scholar
- Anita Haahr, Marit Kirkevold, Elisabeth O.C. Hall, and Karen Østergaard. 2011. Living with advanced Parkinson's disease: A constant struggle with unpredictability. Journal of Advanced Nursing 67, 2 (2011), 408--417.Google ScholarCross Ref
- Matthew K. Hong, Udaya Lakshmi, Thomas A. Olson, and Lauren Wilcox. 2018. Visual ODLs: Co-Designing Patient-Generated Observations of Daily Living to Support Data-Driven Conversations in Pediatric Care. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems - CHI '18. 1--13. Google ScholarDigital Library
- Abdelilah Jilbab, Achraf Benba, and Ahmed Hammouch. 2017. Quantification system of Parkinson's disease. International Journal of Speech Technology 20, 1 (2017), 143--150. CHI 2019, May 4--9, 2019, Glasgow, Scotland UK S.R. Mishra et al. Google ScholarDigital Library
- Mi Young Kang and Caroline Ellis-Hill. 2015. How do people live life successfully with Parkinson's disease? Journal of Clinical Nursing 24, 15--16 (2015), 2314--2322.Google ScholarCross Ref
- Ravi Karkar, Rafal Kocielnik, Xiaoyi Zhang, James Fogarty, George N Ioannou, Sean A Munson, and Jasmine Zia. 2018. Beacon: Designing a Portable Device for Self-Administering a Measure of Critical Flicker Frequency. Interactive, Mobile, Wearable and Ubiquitous Technologies 2, 3 (2018). Google ScholarDigital Library
- Ravi Karkar, Jessica Schroeder, Daniel A Epstein, Laura R Pina, Jeffrey Scofield, James Fogarty, Julie A Kientz, Sean A Munson, Roger Vilardaga, and Jasmine Zia. 2017. TummyTrials: A Feasibility Study of Using Self-Experimentation to Detect Individualized Food Triggers. In Proceedings of the ACM Conference on Human Factors in Computing Systems (CHI 2017). 6850--6863. Google ScholarDigital Library
- Ravi Karkar, Jasmine Zia, Roger Vilardaga, Sonali R. Mishra, James Fogarty, Sean A. Munson, and Julie A. Kientz. 2016. A framework for self-experimentation in personalized health. Journal of the American Medical Informatics Association 23, 3 (2016), 440--448.Google ScholarCross Ref
- Julie A Kientz, Rosa I Arriaga, Marshini Chetty, Gillian R Hayes, Jahmeilah Richardson, Shwetak N Patel, Gregory D Abowd, and Street Nw. 2007. Grow and Know : Understanding Record-Keeping Needs for Tracking the Development of Young Children. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '07). ACM, New York, NY, USA, 1351--1360. Google ScholarDigital Library
- Young-Ho Kim, Jae Ho Jeon, Bongshin Lee, Eun Kyoung Choe, and Jinwook Seo. 2017. OmniTrack: A Flexible Self-Tracking Approach Leveraging Semi-Automated Tracking. Proceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies 1, 3 (2017), 1--28. Google ScholarDigital Library
- Rashmi Lakshminarayana, Duolao Wang, David Burn, K Ray Chaudhuri, Clare Galtrey, Natalie Valle Guzman, Bruce Hellman, Ben James, Suvankar Pal, Jon Stamford, Malcolm Steiger, R W Stott, James Teo, Roger A Barker, and Emma Wang. 2016. Using a smartphone-based self-management platform to support medication adherence and clinical consultation in Parkinson's disease. Nature Partner Journals: Parkinson's Disease May (2016), 1--8.Google Scholar
- Richard S. Lazarus. 1993. Coping Theory and Research: Past, Present, and Future. Psychosomatic Medicine 55, 3 (1993), 234--247.Google ScholarCross Ref
- James L. Levenson, Asha Mishra, Robert M. Hamer, and Andrea Hastillo. 1989. Denial and medical outcome in unstable angina. Psychosomatic Medicine 51, 1 (1989), 27--35.Google ScholarCross Ref
- Jacki Liddle, David Ireland, Simon J. McBride, Sandra G. Brauer, Leanne M. Hall, Hang Ding, Mohan Karunanithi, Paul W. Hodges, Deborah Theodoros, Peter A. Silburn, and Helen J. Chenery. 2014. Measuring the lifespace of people with parkinson's disease using smartphones: Proof of principle. Journal of Medical Internet Research 16, 3 (2014).Google Scholar
- Ting-Yang Lin, Chung-Hung Hsieh, and Jiann-Der Lee. 2013. A KinectBased System for Physical Rehabilitation: Utilizing Tai Chi Exercises to Improve Movement Disorders in Patients with Balance Ability.. In Proceedings of the 2013 7th Asia Modelling Symposium (AMS '13). IEEE Computer Society, Washington, DC, 149--153. Google ScholarDigital Library
- Michael A. Lones, Jane E. Alty, Jeremy Cosgrove, Philippa DugganCarter, Stuart Jamieson, Rebecca F. Naylor, Andrew J. Turner, and Stephen L. Smith. 2017. A New Evolutionary Algorithm-Based Home Monitoring Device for Parkinson's Dyskinesia. Journal of Medical Systems 41, 176 (2017). Google ScholarDigital Library
- Jiaxin Ma, Kenichi Kameyama, and Makoto Nakagawa. 2017. Optimizing Gait Parameters and Insole Sensor Positioning for Parkinson's Disease Assessment. In Proceedings of the 2017 4th International Conference on Biomedical and Bioinformatics Engineering (ICBBE 2017). ACM, New York, NY, USA, 1--5. Google ScholarDigital Library
- Brigid MacCarthy and Richard Brown. 1989. Psychosocial Factors in Parkinson's Disease. British Journal of Clinical Psychology 28, 1 (1989), 41--52.Google ScholarCross Ref
- Haley MacLeod, Anthony Tang, and Sheelagh Carpendale. 2013. Personal informatics in chronic illness management. In Proceedings of Graphics Interface 2013 (GI '13). Canadian Information Processing Society, Toronto, Ontario, Canada, 149--156. http://hcitang.org/papers/ 2013-gi2013-personal-informatics.pdf Google ScholarDigital Library
- Lena Mamykina, Elizabeth M Heitkemper, Arlene M Smaldone, Rita Kukafka, Patricia G Davidson, Elizabeth D Mynatt, Andrea Cassells, N Jonathan, George Hripcsak, United States, United States, West Chester, United States, United States, and United States. 2017. Personal discovery in diabetes self-management: Discovering cause and effect using self-monitoring data. Journal of Biomedical Informatics 76 (2017), 1--8. Google ScholarDigital Library
- Lena Mamykina and Andrew D. Miller. 2010. Constructing identities through storytelling in diabetes management. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '10). ACM, New York, NY, USA, 1203--1212. Google ScholarDigital Library
- Lena Mamykina, Elizabeth Mynatt, Patricia Davidson, and David Greenblatt. 2008. MAHI: Investigation of social scaffolding for reflective thinking in diabetes management. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '08). ACM, New York, NY, USA, 477--486. Google ScholarDigital Library
- C. Marras, J. C. Beck, J. H. Bower, E. Roberts, B Ritz, G. W. Ross, R. D. Abbott, R. Savica, S. K. Van Den Eeden, A. W. Willis, and CM Tanner. 2018. Prevalence of Parkinson's disease across North America. npj Parkinson's Disease 4, 1 (2018), 21.Google Scholar
- Mark Matthews, Elizabeth Murnane, and Jaime Snyder. 2017. Quantifying the Changeable Self: The Role of Self-Tracking in Coming to Terms With and Managing Bipolar Disorder. Human-Computer Interaction 32, 5--6 (2017), 413--446. Google ScholarDigital Library
- Mark Matthews, Elizabeth Murnane, Jaime Snyder, Shion Guha, Pamara Chang, Gavin Doherty, and Geri Gay. 2017. The double-edged sword: A mixed methods study of the interplay between bipolar disorder and technology use. Computers in Human Behavior 75 (2017), 288--300. Google ScholarDigital Library
- Elina Mattila, Ilkka Korhonen, Jukka H. Salminen, Aino Ahtinen, Esa Koskinen, Antti Särelä, Juha Pärkkä, and Raimo Lappalainen. 2010. Empowering citizens for well-being and chronic disease management with wellness diary. IEEE Transactions on Information Technology in Biomedicine 14, 2 (2010), 456--463. Google ScholarDigital Library
- Sinziana Mazilu, Ulf Blanke, Daniel Roggen, Gerhard Tr, Eran Gazit, and Jeffrey H Hausdorff. 2013. Engineers Meet Clinicians: Augmented Parkinson's Disease Patients to Gather Information for Gait Rehabilitation. In 4th Augmented Human International Conference. 4. Google ScholarDigital Library
- Mollie McKillop, Lena Mamykina, and Noémie Elhadad. 2018. Designing in the Dark. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems - CHI '18. 1--15. Google ScholarDigital Library
- Roisin McNaney, Nick Miller, Patrick Olivier, Stephen Lindsay, Karim Ladha, Cassim Ladha, Guy Schofield, Thomas Ploetz, Nils Hammerla, Daniel Jackson, and Richard Walker. 2011. Cueing for drooling in Parkinson's disease. In Proceedings of the 2011 annual conference on Supporting Coping with Parkinson's Disease Through Self-Tracking CHI 2019, May 4--9, 2019, Glasgow, Scotland UK Human factors in computing systems - CHI '11. 619. Google ScholarDigital Library
- Roisin McNaney, Patrick Olivier, Madeline Balaam, Amey Holden, Guy Schofield, Daniel Jackson, Mary Webster, Brook Galna, Gillian Barry, and Lynn Rochester. 2015. Designing for and with People with Parkinson's. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems - CHI '15. 501--510. Google ScholarDigital Library
- Roisin McNaney, Mohammad Othman, Dan Richardson, Paul Dunphy, Telmo Amaral, Nick Miller, Helen Stringer, Patrick Olivier, and John Vines. 2016. Speeching: Mobile Crowdsourced Speech Assessment to Support Self-Monitoring and Management for People with Parkinson's. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems. 4464--4476. Google ScholarDigital Library
- Roisin McNaney, John Vines, Daniel Roggen, Madeline Balaam, Pengfei Zhang, Ivan Poliakov, and Patrick Olivier. 2014. Exploring the acceptability of google glass as an everyday assistive device for people with parkinson's. In Proceedings of the 32nd annual ACM conference on Human factors in computing systems - CHI '14. 2551--2554. Google ScholarDigital Library
- Mevludin Memedi, Jerker Westin, Dag Nyholm, Mark Dougherty, and Torgny Groth. 2011. A web application for follow-up of results from a mobile device test battery for Parkinson's disease patients. Computer Methods and Programs in Biomedicine 104, 2 (2011), 219--226. Google ScholarDigital Library
- Helena M. Mentis, Anita Komlodi, Katrina Schrader, Michael Phipps, Ann Gruber-Baldini, Karen Yarbrough, and Lisa Shulman. 2017. Crafting a view of self-tracking data in the clinical visit. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17). ACM, New York, NY, USA, 5800--5812. Google ScholarDigital Library
- National Health Service. 2016. Symptoms: Parkinson's Disease.Google Scholar
- National Institutes of Health. 2010. Parkinson's Disease Fact Sheet. October (2010), 1--2.Google Scholar
- Elias Chaibub Neto, Brian M. Bot, Thanneer Perumal, Larsson Omberg, Justin Guinney, Mike Kellen, Arno Klein, Stephen H. Friend, and Andrew D. Trister. 2016. Personalized Hypothesis Tests for Detecting Medication Response in Parkinson Disease Patients Using iPhone Sensor Data. Biocomputing 2016 21 (2016), 273--284.Google Scholar
- Elias Chaibub Neto, Thanneer M Perumal, Abhishek Pratap, Brian M Bot, Lara Mangravite, and Larsson Omberg. 2017. On the analysis of personalized medication response and classification of case vs control patients in mobile health studies: the mPower case study. arXiv preprint June (2017). arXiv:1706.09574 http://arxiv.org/abs/1706.09574Google Scholar
- Francisco Nunes, Tariq Andersen, and Geraldine Fitzpatrick. 2017. The agency of patients and carers in medical care and self-care technologies for interacting with doctors. Health Informatics Journal (2017), 146045821771205.Google Scholar
- Francisco Nunes and Geraldine Fitzpatrick. 2015. Self-Care Technologies and Collaboration. International Journal of Human-Computer Interaction 31, 12 (2015), 869--881.Google ScholarCross Ref
- Francisco Nunes and Geraldine Fitzpatrick. 2018. Understanding the Mundane Nature of Self-care : Ethnographic Accounts of People Living with Parkinson's. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems (CHI '18). ACM, New York, NY, USA. Google ScholarDigital Library
- Francisco Nunes, Paula Alexandra Silva, João Cevada, Ana Correia Barros, and Luís Teixeira. 2016. User interface design guidelines for smartphone applications for people with Parkinson's disease. Universal Access in the Information Society 15, 4 (2016), 659--679. Google ScholarDigital Library
- Francisco Nunes, Nervo Verdezoto, Geraldine Fitzpatrick, Morten Kyng, Erik Grönvall, and Cristiano Storni. 2015. Self-Care Technologies in HCI. ACM Transactions on Computer-Human Interaction 22, 6 (2015), 1--45. Google ScholarDigital Library
- Gennaro Pagano, Nicola Ferrara, and David J Brooks. 2016. Age at onset and Parkinson disease phenotype. Neurology 86, 15 (2016), 1--8.Google ScholarCross Ref
- Michael Quinn Patton. 2015. Qualitative Research and Evaluation Methods (4th ed.). Sage Publications, Inc., Los Angeles. 519--556 pages.Google Scholar
- Carla Pereira, Patrícia Macedo, and Rui Neves Madeira. 2015. Mobile Integrated Assistance to Empower People Coping with Parkinson's Disease. In Proceedings of the 17th International ACM SIGACCESS Conference on Computers & Accessibility - ASSETS. 409--410. Google ScholarDigital Library
- Clayton R. Pereira, Danilo R. Pereira, Francisco A. Silva, João P. Masieiro, Silke A.T. Weber, Christian Hook, and João P. Papa. 2016. A new computer vision-based approach to aid the diagnosis of Parkinson's disease. Computer Methods and Programs in Biomedicine 136 (2016), 79--88. Google ScholarDigital Library
- Laura R. Pina, Sang-Wha Sien, Teresa Ward, Jason C. Yip, Sean A. Munson, James Fogarty, and Julie A. Kientz. 2017. From personal informatics to family informatics. In Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW '17). ACM, New York, NY, USA, 2300--2315. Google ScholarDigital Library
- Tamara Pringsheim, Nathalie Jette, Alexandra Frolkis, and Thomas D L Steeves. 2014. The prevalence of Parkinson's disease: A systematic review and meta-analysis. Movement Disorders 29, 13 (2014), 1583--1590.Google ScholarCross Ref
- Stephen Purpura, Victoria Schwanda, Kaiton Williams, William Stubler, and Phoebe Sengers. 2011. Fit4life: The design of a persuasive technology promoting healthy behavior and ideal weight. In Proceedings of the 2011 annual conference on Human factors in computing systems CHI '11. 423. Google ScholarDigital Library
- Mashfiqui Rabbi, Min Hane Aung, Mi Zhang, and Tanzeem Choudhury. 2015. MyBehavior: automatic personalized health feedback from user behaviors and preferences using smartphones. In In Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp '15). ACM, New York, NY, USA, 707--718. Google ScholarDigital Library
- D Ridder, Karlein Schreurs, and Jozien Bensing. 2000. The relative benefits of being optimistic: Optimism as a coping resource in multiple sclerosis and Parkinson's disease. British Journal of Health Psychology 5 (2000), 141--155.Google ScholarCross Ref
- Sara Riggare, Kenton T Unruh, Jasmine Sturr, and Josefa Domingos. 2017. Patient-driven N-of-1 in Parkinson ' s Disease. Methods of Information in Medicine 56, 99 (2017), e123--e128.Google Scholar
- Scott C. Roesch and Bernard Weiner. 2001. A meta-analytic review of coping with illness. Journal of Psychosomatic Research 50, 4 (2001), 205--219.Google ScholarCross Ref
- Anette Schrag, Richard Dodel, Annika Spottke, Bernhard Bornschein, Uwe Siebert, and Niall P. Quinn. 2007. Rate of clinical progression in Parkinson's disease. A prospective study. Movement Disorders 22, 7 (2007), 938--945.Google ScholarCross Ref
- Jessica Schroeder, Chia-Fang Chung, Daniel A. Epstein, Ravi Karkar, Adele Parsons, Natalia Murinova, James Fogarty, and Sean A. Munson. 2018. Examining Self-Tracking by People with Migraine. Proceedings of the 2018 on Designing Interactive Systems Conference 2018 - DIS '18 (2018), 135--148. CHI 2019, May 4--9, 2019, Glasgow, Scotland UK S.R. Mishra et al. Google ScholarDigital Library
- Jessica Schroeder, Jane Hoffswell, Chia-fang Chung, James Fogarty, Sean Munson, and Jasmine Zia. 2017. Supporting patient-provider collaboration to identify individual triggers using food and symptom journals. In In Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW '17). ACM, New York, NY, USA, 1726--1739. Google ScholarDigital Library
- Jessica Schroeder, Chelsey Wilks, Kael Rowan, Arturo Toledo, Ann Paradiso, Mary Czerwinski, Gloria Mark, and Marsha M. Linehan. 2018. Pocket Skills: A Conversational Mobile Web App To Support Dialectical Behavioral Therapy. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI 2018). ACM, New York, NY, USA, 1--15. Google ScholarDigital Library
- Jan Smeddinck, Sandra Siegel, and Marc Herrlich. 2013. Adaptive difficulty in exergames for Parkinson's disease patients. Graphics Interface Conference 2013 (2013), 141--148. Google ScholarDigital Library
- Kiley Sobel, Alexander Fiannaca, Jon Campbell, Harish Kulkarni, Ann Paradiso, Ed Cutrell, and Meredith Ringel Morris. 2017. Exploring the Design Space of AAC Awareness Displays. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems - CHI '17. ACM, New York, NY, USA, 2890--2903. Google ScholarDigital Library
- Jonathan Stamford, Peter Schmidt, and Karl Friedl. 2015. What Engineering Technology Could Do for Quality of Life in Parkinson's Disease: a Review of Current Needs and Opportunities. IEEE Journal of Biomedical and Health Informatics 19, 6 (2015), 1--1.Google ScholarCross Ref
- Daniel Tarsy. 2018. Device-assisted and surgical treatments for Parkinson disease. In UpToDate, Howard I. Hurtig and April F. Eichler (Eds.). Wolters Kluwer, Waltham, MA, 1--28.Google Scholar
- Daniel Tarsy. 2018. Motor fluctuations and dyskinesia in Parkson disease. In UpToDate, Howard I. Hurtig and April F. Eichler (Eds.). Wolters Kluwer, Waltham, MA.Google Scholar
- Daniel Tarsy. 2018. Nonpharmacologic management of Parkinson's Disease. In UpToDate, Howard I. Hurtig and April F. Eichler (Eds.). Wolters Kluwer, Waltham, MA.Google Scholar
- Tammy Toscos, Kay Connelly, and Yvonne Rogers. 2012. Best intentions: Health Monitoring Technology and Children. In Proceedings of the 2012 ACM annual conference on Human Factors in Computing Systems - CHI '12. 1431--1440. Google ScholarDigital Library
- Julio Vega, Samuel Couth, Ellen Poliakoff, Sonja Kotz, Matthew Sullivan, Caroline Jay, Markel Vigo, and Simon Harper. 2018. Back to Analogue: Self-Reporting for Parkinson's Disease. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems - CHI '18. ACM, New York, NY, USA, 1--13. Google ScholarDigital Library
- Peter West, Richard Giordano, Max Van Kleek, and Nigel Shadbolt. 2016. The quantified patient in the doctor's office: Challenges & opportunities. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16). ACM, New York, NY, USA, 3066--3078. Google ScholarDigital Library
- Peter West, Max Van Kleek, Richard Giordano, Mark J Weal, and Nigel Shadbolt. 2018. Common Barriers to the Use of Patient-Generated Data Across Clinical Settings. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems - CHI '18. ACM, New York, NY, USA, 1--13. Google ScholarDigital Library
- Cecilia Winberg, M. Kylberg M., C. Pettersson, T. Harnett, P-O. Hedvall, T. Mattsson, and E. Mansson Lexell. 2017. The Use of Apps for Health in Persons with Multiple Sclerosis, Parkinson's Disease and Stroke -- Barriers and Facilitators. In Harnessing the Power of Technology to Improve Lives, P. Cudd and L. de Witte (Eds.). IOS Press, 638--641.Google Scholar
- Andong Zhan, Max A. Little, Denzil A. Harris, Solomon O. Abiola, E. Ray Dorsey, Suchi Saria, and Andreas Terzis. 2016. High Frequency Remote Monitoring of Parkinson's Disease via Smartphone: Platform Overview and Medication Response Detection. ArXiv e-prints (2016), 1--12. arXiv:1601.00960 http://arxiv.org/abs/1601.00960Google Scholar
- Haining Zhu, Joanna Colgan, Madhu Reddy, and Eun Kyoung Choe. 2017. Sharing patient-generated data in clinical practices: An interview study. In American Medical Informatics Association Annual Symposium proceedings, Vol. 10. 1303--1312. http://www.ncbi.nlm.nih.gov/pubmed/28269928{%}5Cnhttp: //www.pubmedcentral.nih.gov/articlerender.fcgi?artid=PMC5333267Google Scholar
Index Terms
- Supporting Coping with Parkinson's Disease Through Self Tracking
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