1. Share your experiences of using mechanical ventilation at home

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1 1. Share your experiences of using mechanical ventilation at home We want to find out how people who use a ventilator at home feel about the equipment they use, and the support they receive. If you help a partner or family member to use a ventilator at home you can also fill in this survey. The survey will take 10 minutes to complete. The information from the survey will help healthcare professionals, working with the European Respiratory Society (ERS), to write new high quality standards for doctors to use when prescribing and monitoring home ventilation. Using a ventilator at home is defined as breathing that is assisted by a machine used in the home environment. This usually means that your medical condition is stable, but your body needs help some or all of the time to maintain your health or life. This survey is anonymous so we will not ask for your name or to contact you. But if you would like to receive the results of this survey, you can enter your address at the end. 1. Do you use a ventilator at home or help someone else to? I use a ventilator at home I help my partner or family member to use a ventilator at home 2. Are you male or female? Male Female 3. What age are you? Under Over 7 4. Where do you live? Enter a country. Country:. What medical condition means that you use a ventilator at home? For example, postpolio syndrome, sleep apnoea, respiratory failure, muscular dystrophy.

2 . How long have you been using a ventilator? Answer to the nearest month/year. 0 months 12 months 1 2 years 2 years 10 years More than 10 years 7. In this time, how many ventilators have you had? Enter a number. 8. What type of ventilator(s) do you use? Tick all that you currently use. Not sure Bilevel (BiLevel S/T 22, BiPAP A30 or AVAPS, BiPAP Synchrony) Volume cycled ventilator (such as LTV 800, PLV 100, VLP 102) Pressure support ventilator (such as Falco 101, ivent 101 Performance, Nippy 3+) Combination or multi mode (such as ATHENA, Elisee 10, Falco 202) 9. How many hours of the day and night do you use your ventilator? If you use a ventilator 24 hours a day enter 12 hours for day and 12 hours for night. hours of the day hours of the night 10. What interface do you use? Mark all that you use. Mouth mask/mouth piece Nasal mask Negative pressure device (such as pneumobelt, iron lung, chest cuirass) Have a tracheotomy

3 11. Does anyone help you with your ventilator at home? You can mark more than one. Partner/spouse Relative Friend Support worker/personal assistant Nurse/home support team 2. What matters most to you? 12. How important to you are these everyday life aspects of using a ventilator? For each, say if it is very important, important, not very important, unimportant, or not relevant. Unimportant Not very important Important Very important Not relevant How comfortable the mask is How noisy the ventilator is Reducing dryness of mouth and eyes Reducing nasal secretions Not feeling claustrophobic Having smooth, natural feeling breathing Being able to speak and be heard whilst using my ventilator How heavy it is How big it is How medical it looks Being able to fall asleep easily and stay asleep whilst using my ventilator Being able to mount it on my wheelchair Being able to travel with it (such as by car and by air)

4 13. How important to you are these technical aspects of using a ventilator? For each, say if it is very important, important, not very important, unimportant, or not relevant. Unimportant Not very important Important Very important Not relevant Having a builtin/integrated humidifier The ventilator responds automatically to my breathing Having alarms Being able to adjust the alarms How much electricity it uses Having an external power supply Having a battery with a long life The ventilator compensates for mask leaks Being able to operate the ventilator myself (such as on/off buttons, alarm reset) Being able to adjust the settings Having more than one pre programmed setting Being able to clean the equipment easily Being able to change/clean the tubing and filters easily 14. Have you made any changes to the ventilator to make it easier to use or more comfortable? What changes or additions have you made and why? 3. How good is the support you receive? 1. Do you use the ventilator as instructed? Yes Sometimes No Please explain

5 1. How did the health professional give you information about the ventilator and make sure you understood? Mark all that were used. Spoken information Written information Demonstrated using the equipment Watched me using the equipment 17. How good is the support that you receive with your ventilator at home? This might be from your doctor, a home support team or local healthcare service. Excellent Good Satisfactory Unsatisfactory No support 18. Would you be happy for your health professional to monitor your ventilator remotely to make sure the settings are always correct and comfortable for you? This is known as tele monitoring. Yes Maybe No Please give your reasons 19. How could using your ventilator at home be improved for you? 20. What key message would you give to health professionals about prescribing and monitoring ventilators at home? If you have any comments or questions Sarah Masefield (sarah.masefield@europeanlung.org), European Lung Foundation (ELF).