Exit this survey New Survey Sense-Park 1 Question Title * 1. Sense-ParkAs part of its commitment to accelerating effective new treatments for Parkinson’s, The Cure Parkinson’s Trust has joined up with specialists in the neurological, technological and user experience analysis fields from across Europe to establish a more personalised but objective system of measuring and monitoring Parkinson’s. We believe this will have major implications for both the on-going management and wellbeing for people living with the condition, as well as ensuring the relevance and accuracy of the assessment of people with Parkinson’s in clinical trials. Current assessment scales do not take into account that the symptoms of Parkinson’s are different in everyone. They are reliant on subjective snapshots of the condition and often have no application or relevance to the individual nature of the condition or the priorities of the person involved. The Sense-Park project presents an opportunity to introduce a means of measuring Parkinson’s from the perspective of the individual living with the illness. It will do this with reference to the use of the most up-to-date technology and methodology to ensure the retention of as much scientific integrity and application as possible. It is our intention that the resulting product will provide a new assessment tool or device for Parkinson’s which is both accessible and engaging to people with Parkinson’s. The device will be characterised by its capture of continuous and wide-ranging data which is personal to the individual thereby improving the treatment of Parkinson’s in the following ways:1. A means of allowing people with Parkinson’s to record and analyse the patterns and traits of their own condition and take greater control over their sense of wellbeing.2. Allows for more relevant and personalised discussion between a person with Parkinson’s and their clinicians. Improvements in this communication will enable better overall management and tailoring of a treatment plan.3. The personalisation capabilities of the measurement tool will make the case for outcome measures in clinical trials to become more patient orientated and therefore arguably more accurate and relevant. In order to help us the the Sense-Park team to achieve producing a user friendly and user centric device, we are looking for your insights into your condition. This is our chance as people with Parkinson’s to inform scientific progress with our needs as opposed to others perceptions of those needs. To start the ball rolling, please complete the following questionnaire. Please answer all the questions. Many thanks, Tom Isaacs, The Cure Parkinson's Trust Survey is available online at: http://www.surveymonkey.com/s/BRVXDBCThis survey will help The Cure Parkinson's Trust provide vital information to help develop a relevant monitoring system for Parkinson's, with the Sense-Park consortium of specialists in the neurological, technological and user experience analysis fields. Your opinions are very important to us. Responses will be anonymous and names will be omitted and making the data untraceable. Do you give permission for your responses to be shared with the rest of the Sense-Park team this anonymous data can be published as needed? Yes No Question Title * 2. Are you male or female? male female Question Title * 3. How old are you? Question Title * 4. What year were you diagnosed? Question Title * 5. What year did you experience your first symptoms? Question Title * 6. What was the first symptom you experienced (this may be before diagnosis)? Question Title * 7. What Parkinson's medication do you take? (Please tick any that apply) Levodopa and benserazide - co-beneldopa (Madopar) Levodopa, carbidopa and entacapone (Stalevo) Levodopa and carbidopa - co-careldopa (Sinemet) Co-careldopa (Duodopa) Apomorphine (Apo-go Pen, PFS and ampoules) Bromocriptine (Parlodel) Cabergoline (Cabaser) Pergolide (Celance) Pramipexole (Mirapexin and Mirapexin PR) Ropinirole (Requip) Ropinirole (Requip XL) Rotigotine (Neupro - patches) Rasagiline (Eldepryl) Selegiline (Zelapar) Entacapone (Comtess) Tolcapone (Tasmar) Amantadine (Symmetrel) Procyclidine hydrochloride (Arpicolin) Orphenadrine hydropchloride (biorphen) Trihexphenidyl (Broflex) Orpehnadrine hydrochloride (Disipal) Orphenadrine hydrochloride Non proprietary or self prescribed No medication Other (please specify) Question Title * 8. Do you live With a spouse or partner With family With friends In sheltered housing/a home Alone Other (please specify) Question Title * 9. What technology or devices do you already use? (Choose any that apply or add your own) Computer (e.g. desktop, laptop, ipad) TV, DVD i-phone or smart phone Mobile phone Wii-fit Computer games Voice recognition technology Technology to monitor performance (e.g. speedometer, pedometer, heart-rate monitor, stopwatch etc) Other (please specify) Question Title * 10. How interested are you in using technology? Very interested Moderately interested Uninterested No interest at all Other (please specify) Question Title * 11. What motor symptoms do you currently experience? (Motor symptoms relate to movement, please mark any that apply - further descriptions and definitions can be found at http://www.cureparkinsons.org.uk/document_1.aspx?id=0:60295&id=0:37635) Tremor Stiffness Slowness of movement Rigidity Falling Balance problems Freezing Dyskinesia Dystonia Festination Difficulty instigating movement Difficulty with fine movement Other (please specify) Question Title * 12. Which non-motor symptoms do you experience? (Please mark any that apply) Sleeplessness Lack of energy Daytime sleepiness Tiredness/exhaustion Constipation and other gut related problems Excessive sweating Loss of sense of smell Difficulty swallowing Dribbling Dizziness Difficulties with speech Difficulties with eyesight Weight loss or weight gain Pain Memory problems Difficulties with thinking Dementia Depression Anxiety Hallucinations Hypersexuality Obsessive compulsive behaviour Changes in behaviour Inability to organise Other (please specify) Question Title * 13. Which of the above symptoms (motor and non-motor) most define your Parkinson's? List three Question Title * 14. What outside factors affect the state of your Parkinson's (negatively, positively or both)? Stress Sleeplessness/Sleep deprivation Diet Timing of medication Missing doses of medication Change in medication by doctors Change from branded to non-branded medication Hayfever/Allergies Injuries Non-Parkinson's medication e.g. for pain relief Weather Lack of exercise General sense of well-being Time of day Pain Other (please specify) Question Title * 15. Is there anything that helps you to predict your Parkinson's day, some examples are below, but please add your own ideas in the 'other' box. It would be very helpful if you could supply up to 2 predictors. A good night's sleep Speed of kick in for the first set of pills of the day Wii-fit score Gut function Sense of balance first thing in the morning General sense of well-being or mood Exercise Other (please specify) Question Title * 16. If you had to choose 3 symptoms to monitor continuously over a period of time, what would they be? Question Title * 17. In monitoring these three symptoms, do you think they would help you in gaining an understanding of your ...... (tick all that apply)? Wellbeing Coping Learning about the disease Treatment Questions to raise with your healthcare professional Other (please specify) Question Title * 18. How important/beneficial is communication with your Parkinson's consultant? Very important Moderately important Unimportant Not important at all Other (please specify) Question Title * 19. What are the barriers, if any, in the communication with your Parkinson's consultant? Question Title * 20. Do you think your Parkinson's consultant understands your needs and the scope of your Parkinson's? Yes No Other (please specify) Question Title * 21. Do you communicate the full range of symptoms you experience to your consultant? If no, please explain why? Yes No Why? Question Title * 22. When you have a Parkinson's appointment, who do you see? (please tick all that apply) A Parkinson's specialist A neurologist A GP A Parkinson's Nurse Specialist A physiotherapist A speech therapist Other (please specify) Question Title * 23. How frequently do you see/communicate with health care professionals or your Parkinson's health care team? Monthly Every two months Every four months Every six months Every eight months Every 10 months Yearly Other (please specify) Question Title * 24. How important to you is interaction with other people with Parkinson's? Very important Moderately important Unimportant Not important at all Other (please specify) Question Title * 25. What should that interaction be? (Please tick any that apply) Social gatherings One-to-one's Mentoring Parkinson's group meetings Research meetings Web community like Parkinson's Movement Forum No interaction Other (please specify) Question Title * 26. When monitoring your Parkinson's, is it useful to compare and contrast symptoms with other people with Parkinson's? Very useful Moderately useful Not that useful Not useful at all Other (please specify) Question Title * 27. How important to you is it to understand your own Parkinson's symptoms and recognise patterns in your condition? Very important Moderately important Unimportant Not important at all Other (please specify) Question Title * 28. What elecronic tools do you use monitor your Parkinson's? Wii-fit Reviber bodywave machine Typing exercises Nintendo Brain Trainer Memory or logic games Cell phone and technology to monitor performance (e.g. iPhone aps) None Other (please specify) Question Title * 29. Which methods of recording information about your Parkinson's do you use? Keep a diary Record times of meds taken: use an alarm for timing of meds Advice and opinion of family and carers Self-Assessment Tool Plot information on a chart Quality of Life Dial Monitor from day to day only Develop your own scale None Other (please specify) Question Title * 30. Do you have any comments specifically related to the use and ease of use of technologies in Parkinson's? Question Title * 31. We may have further questions relating to monitoring Parkinson's which will provide vital information for Sense-Park, would you be happy to take part in further surveys? Yes No Question Title * 32. If yes, please supply your full name, country of residence and email address so that The Cure Parkinson's Trust can contact you. Done
