1. PFF Teal = 0+160+175 MAIN COLORS PFF Green = 120+162+47 Light Green = 193+216+47 Red = 242+102+73 HIGHLIGHT COLORS Light Grey = 220+220+210 Dark Grey = 100+98+76 Black = 0+0+0 ANNE E. HOLLAND, PhD PULMONARY FIBROSIS MANAGEMENT STRATEGIES I NOVEMBER 13, 2015 PULMONARY REHABILITATION AND OXYGEN THERAPY

2. LIVING WELL WITH PULMONARY FIBROSIS

3. SUPPORTIVE THERAPIES FOR PF Aim to improve wellness Reduce symptoms Increase strength and fitness Enhance ability to undertake important activities Improve knowledge and confidence Provide support Major aim is not to reduce disease progression Rather, to improve quality of life and wellbeing Pulmonary rehabilitation and oxygen therapy have key roles

4. PULMONARY REHABILITATION A program of exercise and education, designed to improve the physical and psychological condition of people with chronic respiratory disease

5. WHAT TO EXPECT AT PULMONARY REHABILITATION A one-on-one assessment An exercise program tailored for you plus monitoring whilst you exercise Information, support and self management training A home exercise program (to keep you fit and strong once the program ends) A group that contains other patients with a range of diagnoses and disease severity

6. WHAT TO EXPECT AT PULMONARY REHABILITATION- SPECIFICALLY: 8-12 week program, usually 2-3 times a week Walking training and stationary cycle training, light weights for your arms and legs Sometimes other physical training, like stretching and balance Information on a range of topics including (but not limited to) How the lungs work How to exercise safely Nutrition Oxygen therapy Managing medications and side effects

7. HOW MIGHT I FEEL AT THE END? At the end of rehab, most people experience: Improved exercise capacity (eg 6-min walk test) Reduced breathlessness Improved energy levels Improved quality of life Some people experience: Reduced anxiety and depression Increased levels of physical activity in daily life Dowman et al, Cochrane Database of Systematic Reviews 2015

8. What goes up must come down??? Benefits tend to diminish after six months Pulmonary rehabilitation is an opportunity to establish an ongoing exercise program to stay fit and strong Talk with your trainer about what might work for you MAINTAINING THE GAINS AFTER PULMONARY REHABILITATION Holland et al Thorax 2008

9. Never too early to start May be easier and more beneficial if you start early We all need a regular exercise program May be possible to go back to rehab, especially if your circumstances change KEY MESSAGES ABOUT PULMONARY REHABILITATION Holland et al Respiratory Medicine 2009

10. WHY USE OXYGEN THERAPY Pulmonary fibrosis makes it more difficult to get oxygen into the blood (and from there to the rest of the body) Decreased oxygen saturation (ie low blood oxygen level) Is common during exercise May occur during sleep Sometimes present when sitting still

11. DOES OXYGEN THERAPY WORK? Most information from people with severe COPD Improved survival with oxygen therapy ≥ 16 hrs/day In PF, oxygen therapy consistently improves exercise capacity in short-term studies Variable effect on symptoms No good studies on survival

12. Improved confidence Be more active Feel more in control Constant worry about running out of oxygen ‘… with the oxygen on at least I can get around, not as fast as normally, but I can get around....and I don’t seem to cough as much’ [Terry] ‘…I couldn’t sit here this long talking to you without oxygen’ [Frank]’ PATIENT EXPERIENCES WITH OXYGEN THERAPY Duck J Adv Nursing 2015

13. A tool that assists you to do more of the activities you want, and to do those activities more comfortably May assist with a range of symptoms Better breathing Higher energy levels Quicker recovery after activity Better sleep Less anxiety A trade-off with the inconvenience and physical challenges of equipment THE ROLE OF OXYGEN THERAPY

14. Fixed concentrators – great for overnight and around the house Cylinders – great for going out but may run out and can be heavy Portable concentrators - much easier to use but variable flow rates and variable battery life OXYGEN DEVICES-THERE ARE MANY…

15. There is a limit to the oxygen flow that any device can deliver – and it varies As breathing gets faster, the amount of oxygen inhaled in each breath goes down This may not matter if the flow rate is big enough THE CHALLENGE: MEETING OXYGEN FLOW NEEDS IN PF Chatburn Resp Care 2010

16. Situations where the oxygen flow rate is sometimes not enough for some people with PF: Fast, shallow breathing Exercise Sleep At rest Pulsed oxygen supply (on demand) Some portable concentrators MEETING YOUR OXYGEN FLOW NEEDS Chatburn Resp Care 2010

17. Many options and increasing all the time Work with your health professional to find the right one: Different types of cylinders Pulse dose or not Different types of oxygen supply (e.g. liquid) Different portable concentrators Different types of nasal cannulae and tubing OXYGEN THERAPY THAT IS RIGHT FOR YOU

18. SUMMARY Pulmonary rehabilitation and oxygen therapy can contribute to living well with PF Never too early to start pulmonary rehabilitation Establishing a long term exercise program that you enjoy is key to longer lasting benefits Oxygen therapy helps to do more physical activity and may have a range of symptom benefits Work with your health care professional to find the device that is right for you

19. PFF Teal = 0+160+175 MAIN COLORS PFF Green = 120+162+47 Light Green = 193+216+47 Red = 242+102+73 HIGHLIGHT COLORS Light Grey = 220+220+210 Dark Grey = 100+98+76 Black = 0+0+0 Thank you.