Online Data Supplement

Transcription

1 Online Data Supplement Patient Perceptions of the Adequacy of Supplemental Oxygen Therapy: Results of the American Thoracic Society Nursing Assembly Oxygen Working Group Survey Susan S. Jacobs, Kathleen O. Lindell, Eileen G. Collins, Chris M. Garvey, Carme Hernandez, Sally McLaughlin, Ann M. Schneidman, Paula M. Meek

2 E1 Online Supplement: Member List of Oxygen Working Group ATS Nursing Assembly Oxygen Work Group Membership ATS International Meeting, San Francisco, 5/15/2016, 11:45-1:15 Present at Meeting Susan Jacobs RN, MS Chair, ATS Nsg Assembly Planning Committee Sarah Latham COPD Foundation Jason Moury RT, COPD Foundation Chair, Nursing Assembly Oxygen Working Group Research Nurse Manager and Nurse Coordinator, Interstitial Lung Disease Program, Stanford Valerie Cheng (patient*) Exec Director, Hawaii COPD Coalition Sally McLaughlin RN, MSN ATS Nursing Assembly Planning Committee Nurse Coordinator Interstitial Lung Disease Program, UCSF Tom Kallstrom MBA,, RRT Exec Director American Association or Respiratory Care (AARC) Tim Meyers Assoc. Exec Director AARC Kathy Lindell, PhD, RN ATS Nursing Assembly Planning Committee Former Chair, Nursing Assembly Research Ass t Professor of Medicine CNS, Center for Interstitial Lung Disease University of Pittsburgh Ann Schneidmann MSN, CNS, RN, CHPN ATS Nursing Planning Committee Chair, ATS Clinician Advisory Committee Pulmonary Resource Program Director Hospice of the Valley, Arizona Karen Erickson (patient) Alpha-1 Foundation, PAR, Rare Lung Disease Consortium (RLDC) Sue Sherman MBA Executive Director, LAM Foundation Ann McKenna MBA Patient Services & Education, LAM Foundation Mary Harbaugh PhD (patient), LAM Foundation Executive Committee Elaine Hensley, - Chief Liaison, DMEPOS Competitive Bidding Implementation Contractor, CA Eileen Collins PhD, RN, FAACVPR, FAAN Phabian Barrett Liaison, DMEPOS Competitive Bidding Implementation Contractor, CA Chair, Nursing Assembly E2

3 Professor, Univ of Illinois, College of Nursing Jennifer Mefford Director of Strategic Partnerships, Pulmonary Fibrosis Foundation Gary Ewart ATS Governmental Affairs, Washington Office Sue M. Scleroderma/ILD patient Sister of Sue M informal caregiver Dona Upson MA, MD ATS Behavioral Science & Health Services Research Jessica Armstrong Sr. Manager Early Diagnosis PAH Foundation Chair, ATS Health Policy Committee *All patients are current or previous oxygen users Absent at meeting but Active in Survey Project Chris Garvey RN, MSN, FNP Assembly on Pulmonary Rehabilitation Sleep Disorders, UCSF Carme Hernendez Phd, RN Nsg Assembly, Planning Committee, University of Barcelona, ES Jamie Sullivan MPH, Sr. Direct of Public Policy and Outcomes, COPD Foundation Jeanne Rommes (patient) COPD Efforts Courtney Firak MPH, Director, Programs Pulmonary Fibrosis Foundation E3

4 E2 Online Supplement: Patient Supplemental Oxygen Survey American Thoracic Society (ATS) Nursing Assembly Oxygen Working Group: Patient Supplemental Oxygen Survey You have been asked to complete this questionnaire because you are an adult with a lung condition that requires you to use supplemental oxygen. This questionnaire is part of a research study to collect detailed information that will help healthcare providers, oxygen suppliers, insurance companies, Medicare, and others to better understand what types of home oxygen services are being used, and what kinds of challenges and problems patients face when using home oxygen. The results of this survey will be used to develop strategies to improve supplemental oxygen services for patients. This questionnaire will take approximately 20 minutes for you to complete and it will not include any information that identifies you. Completing this questionnaire is voluntary, you can stop at any time, and if there are questions that you prefer not to answer, you do not have to answer them. This survey was developed by the American Thoracic Society s Nursing Assembly Oxygen Working Group in collaboration with the AARC, COPD, Alpha 1, PHA, PFF, and LAM Foundations.* If you have any question about this survey, please call (650) * AARC American Association of Respiratory Care COPD-Chronic Obstructive Pulmonary Disease Foundation Alpha-1- Alpha-1 Antitrypsin Deficiency Foundation PHA-Pulmonary Hypertension Association PFF-Pulmonary Fibrosis Foundation LAM-Lymphangioleiomyomatosis Foundation E4

5 I. Information about you A. How old are you? B. What is your gender? 1. Male 2. Female 3. Other (please specify): C. What best describes the area in which you live? 1. Urban 2. Suburban 3. Rural D. What state do you live in? E. What is your work status? (Check all that apply) 1. Retired 2. Working part time 3. Working full time 4. Never employed 5. Disabled 6. Other (please specify): F. What is your main lung problem? (check only one) 1. Chronic Obstructive Pulmonary Disease (COPD; chronic bronchitis, emphysema) 2. Alpha-1 Antitrypsin Deficiency Emphysema 3. Pulmonary Hypertension 4. Interstitial Lung Disease (ILD)/Pulmonary Fibrosis (Includes Idiopathic Pulmonary Fibrosis, Chronic Hypersensitivity Pneumonitis, Autoimmune Disease, Scleroderma, Lupus, Sarcoidosis, Rheumatoid Arthritis ILD, and general Pulmonary Fibrosis and ILD) 5. Lymphangioleiomyomatosis (LAM) 6. Lung Cancer E5

6 7. I have had a lung or heart-lung transplant 8. Not sure what type of lung problem I have 9. Other lung disease? (please specify) G. Please mark below the most appropriate statement that describes how short of breath you are when you ARE NOT using oxygen: 1. I am not troubled with breathlessness except with strenuous exercise 2. I get short of breath when hurrying on the level or walking up a slight hill 3. I walk slower than people of my age on the level because of breathlessness or I have to stop for breath when walking at my own pace on the level s breath you are when you ARE using oxygen: 4. I stop for breath after walking about 100 yards (90 meters) (or after a few minutes) on the level I am too breathless to leave the house or breathless on dressing or undressing 5. H. Plea e mark below the most appropriate statement that describes how short of 1. I am not troubled with breathlessness except with strenuous exercise 2. I get short of breath when hurrying on the level or walking up a slight hill 3. I walk slower than people of my age on the level because of breathlessness or I have to stop for breath when walking at my own pace on the level 4. I stop for breath after walking about 100 yards (90 meters) (or after a few minutes) on the level 5. I am too breathless to leave the house or breathless on dressing or undressing I. In the past 12 months, how many days have you been in the hospital because of your lungs or breathing problems? J. In the past 12 months, how many times have you been to the emergency room because of your lungs or breathing problems? K. Have you attended a Pulmonary Rehabilitation program? 1. Yes 2. No; skip to question M 3. Not sure E6

7 L. When you attended a Pulmonary Rehabilitation program, what activities did you do? (check all that apply) 1. Exercise Training 2. Education Sessions 3. Behavioral Change M. How long have you been using supplemental oxygen? 1. <1 yr yrs 3. More than 5 yrs N. Do you have a pulse oximeter to check your oxygen saturations? (small device placed on your fingertip, earlobe, or forehead to measure oxygen levels) 1. Yes 2. No O. How do you decide how much oxygen you need (what setting on your machine) with various activities? 1. Based on how short of breath I feel 2. Based on what my healthcare provider ordered for me (I don t adjust my oxygen according to my pulse oximeter readings). 3. Based on what my healthcare provider told me using my pulse oximeter readings 4. Based on how long my tank will last 5. Not sure; I was never told how much oxygen to use 6. Other (please specify): P. When you first had oxygen prescribed, how were you taught about how to use it? 1. The clinic nurse or MD instructed me how to use it but I did not receive anything in writing 2. I was given verbal instruction and written instructions 3. The oxygen delivery person taught me how to use it 4. I did not receive any instruction on how to use it. 5. Other (please specify): E7

8 Q. How well did the initial instruction prepare you to operate the equipment and use oxygen? 1. I was very unprepared 2. I was somewhat unprepared 3. I was moderately well prepared 4. I was very well prepared R. When your portable oxygen system was delivered to your home, did you have your oxygen saturations measured by a technician or therapist in your home while you were walking using the portable system that was delivered to you? 1. Yes 2. No 3. I bought my system and it was delivered by mail 4. Can t remember or not sure S. How often have you had your oxygen readings checked on your own personal portable oxygen equipment with a pulse oximeter while walking at your doctor visit (either walking in a hallway or during a Six Minute Walk)? 1. I don t use oxygen with activity 2. At every doctor visit 3. Every few months at my doctor visit 4. About once a year when I have a doctor visit 5. I have never had my oxygen saturations checked using my own portable oxygen equipment while walking at a doctor visit. 6. I can t remember if my oxygen levels have been checked while walking with my own equipment at my doctor visits. T. In what situations do you use your oxygen? Check all that apply hrs/day, or basically for most of the time 2. With exertion at sea level E8

9 3. With exertion at altitude 4. With sleep 5. With air travel 6. Other: (please specify) U. What liter flow or number setting on your oxygen equipment do you usually use at rest? (Note: continuous flow refers to a constant flow; pulse/demand refers to oxygen systems that trigger intermittently only when you breath in) 1. I don t use oxygen at rest continuous flow pulse/demand/intermittent flow continuous flow pulse/demand/intermittent flow continuous flow pulse/demand flow/intermittent flow 8. 7 or higher continuous flow 9. 7 or higher pulse/demand/intermittent flow V. What liter flow or number setting do you usually use with sleep: 1. I don t use oxygen with sleep continuous flow pulse/demand/intermittent flow continuous flow pulse/demand/intermittent flow continuous flow pulse/demand flow/intermittent flow 8. 7 or higher continuous flow 9. 7 or higher pulse/demand/intermittent flow E9

10 W. What liter flow or number setting do you usually use with exercise or exertion: 1. I don t use oxygen with exercise or exertion continuous flow pulse/demand/intermittent flow continuous flow pulse/demand/intermittent flow continuous flow pulse/demand flow/intermittent flow 8. 7 or higher continuous flow 9. 7 or higher pulse/demand/intermittent flow II. Information about the oxygen equipment that you use A. Do you use a portable oxygen system when you leave the house (excluding air travel)? 1. Yes 2. No; skip to question C B. What type of portable oxygen system do you usually use when you leave the house? (not including when you are traveling) 1. Portable Oxygen Concentrator (POC) 2. B, C, D, M6L, M9 cylinders/tanks from my Homefill or Transfill system that I fill myself 3. E tank (green cylinders/tank about 2 ft tall in a roller cart of some type) 4. M2, M4, M6, ML6, M9, or small green cylinders/tanks that are delivered to me 5. Liquid Portable Oxygen containers that I fill from a larger reservoir 6. Other: (please specify) C. Do you use a portable oxygen system (one you can carry or pull when you leave the house) at work for your job outside of the home? 1. I do not work outside the home; (skip to question E) 2. I don t need oxygen at work; (skip to question E) E10

11 3. Yes I use oxygen at work 4. I should use oxygen at work but I don t because my portable system won t last long enough 5. I should use oxygen at work but I don t because I am concerned about my job security if I am seen using oxygen D. When you use oxygen in a work/employment setting outside of the home, what kind of system do you usually use? 1. A Portable Oxygen Concentrator (POC) that runs on batteries that I can take out of the house either over my shoulder or with a pullcart 2. A 2 ft tall green E cylinder/tank that I use in a pullcart that is not refillable 3. Small cylinders/tanks about the size of a wine bottle up to about 16 inches that are not refillable and fit either in a backpack or over my shoulder 4. A Transfill or Homefill system that is a stationary concentrator that I can also use to fill my medium size hard tanks when I leave the house. 5. A liquid oxygen system that I can use to fill smaller tanks or canisters when I leave the house, or use the larger reservoir while in the house 6. I am not sure what type of portable system I have 7. Other combinations:_(specify) E. What type of system do you usually use when you sleep? 1. I don t use oxygen when I sleep 2. A stationary home concentrator that plugs into an electrical outlet 3. A Portable Oxygen Concentrator (POC) 4. A compressed gas (hard green tank) E tank or very large H tank 5. A stationary liquid oxygen reservoir 6. Other type of system (specify): F. What type of system do you usually use when you exert yourself at home (exercise, household activities, showering, etc ) 1. I don t use oxygen when I exert myself at home 2. Stationary home concentrator that plugs into the wall 3. Portable oxygen concentrator (POC) E11

12 4. Compressed gas (hard green tanks) -E tanks 5. My cylinders/tanks from a Homefill or Transfill system (tanks can be filled from the concentrator) 6. Stationary liquid oxygen reservoir 7. Other: (please specify) G. What type of setting or flow do you use when you leave the house? 1. I don t use oxygen when I leave the house 2. Pulse, demand or intermittent flow (sometimes called an oxygen conserving device) 3. Continuous flow 4. I switch between continuous and pulse flow depending on what I am doing 5. I am not sure H. What is the highest continuous liter flow or number setting that can be selected on your portable system and regulator (including small tanks, POC, etc.)? 1. My portable system does not have continuous flow or higher 10. Not sure I. What is the highest pulse or demand number setting that can be selected on your portable system and regulator? 1. My portable system does not have pulse or demand flow 2. 2 E12

13 or higher 10. Not sure J. How long does your portable tank last when you leave the house before it either runs out of oxygen OR you run out of ONE portable battery used for your Portable Oxygen Concentrator-(POC)? 1. I don t need to use a portable tank outside the house 2. About 1 hr. or less 3. Up to 2 hrs 4. Up to 4 hrs hrs 6. More than 6 hrs K. Does your current portable oxygen equipment limit your participation in activities (exercise, social gatherings, work, etc ) outside of the home? 1. I don t need to use a portable tank outside the house- skip to question N 2. Not at all-skip to question M 3. Sometimes 4. Frequently 5. All the time L. Which activity outside of the home is MOST impacted by your need to use portable oxygen equipment? Check only one 1. My ability to go to Pulmonary Rehab or Exercise classes 2. My ability to exercise and keep my oxygen saturations over 90% E13

14 3. My ability to socialize with friends and families 4. My ability to work outside the home 5. My ability to take care of my children and their activities 6. My ability to travel 7. My ability to go to my healthcare appointments 8. Other activities, (specify the activity limitation, not listed above, that is most important to you): M. In general, how long would you want your portable oxygen supply to last when you are away from your home on a day-to-day basis (not including travel)? hrs hrs hrs 4. Other: N. How many missed work days in the past year do you estimate were due to your oxygen issues (not due to your health or other factors)? 1. I don t work outside the home 2. Estimated number of work days missed in the past year due to oxygen issues: O. What type of health/medical insurance do you have? 1. Medicare Part A alone 2. Medicare Part B alone 3. Medicare Parts A & B alone 4. Medicare and a supplemental insurance 5. Private insurance (HMO, PPO) 6. Veteran s Benefits 7. Disability 8. Medicaid 9. Affordable Care Act (ACA) E14

15 10. I don t have health/medical insurance 11. Other: P. How much do you pay out of pocket each month for your oxygen and supplies (the amount that your insurance or benefits don t cover)? 1. $0 2. $1-$50 3. $51-$ $101-$ Over $200 Q. Were you aware exactly how much you would pay out of pocket BEFORE you received your oxygen equipment? 1. Yes 2. No 3. Not applicable (you paid for equipment yourself or other) R. Do you pay for any of your oxygen equipment entirely out of pocket because your insurer does not cover it? 1. Yes 2. No; skip to question T S. Which equipment do you pay for? (check all that apply) 1. Portable oxygen concentrator (POC) 2. Extra batteries for my POC 3. Liquid oxygen 4. Regulators 5. Special cannula (either softer cannula, or Oxymizer, or Pendant) 6. Stationary concentrator (not the portable type) 7. Portable compressed gas tank of some other type 8. Other: (please specify) E15

16 T. How long have you had your current oxygen set up in your home? 1. Less than 1 yr yrs 3. More than 3 yrs III. Information about the quality of service from your oxygen supplier A. Have you ever had any type of problems related to your oxygen? (service, equipment, physician s orders ) 1. No; skip to Question E 2. Yes B. How often have you had any type of problem with your oxygen. 1. I rarely have problems with my oxygen (every 6-12 months) 2. I occasionally have problems with my oxygen (every 3-5 months) 3. I frequently have problems with my oxygen (weekly or monthly) C. What types of problems with your oxygen have you had? (check all that apply) 1. Equipment not working correctly 2. Incorrect or delayed oxygen orders from my healthcare providers 3. Delayed or unreliable delivery of oxygen equipment by my oxygen supplier 4. Not being provided enough tanks for my activity needs outside of the house 5. Lack of portable systems that I can carry/pull/physically manage 6. Lack of portable systems that provide high enough continuous liter flow 7. Not getting or having problems getting oxygen for my travel needs 8. Getting enough portable oxygen so that I can continue to work 9. I used to use liquid oxygen but my supplier no longer offers it 10. I need liquid oxygen because it offers high flow and portability but it is not available to me 11. The medical equipment company does not respond to my calls and / or needs. 12. I received oxygen bills that were more than the amount explained to me. E16

17 13. Not being able to mix systems, for example tanks and POC, or small and large tanks 14. Not being able to change oxygen companies 15. Other: (please specify) D. What is the biggest problem that you would say you have with your oxygen (choose only one)? 1. Equipment not working correctly 2. Incorrect or delayed oxygen orders from my healthcare providers 3. Delayed or unreliable delivery of oxygen equipment by my oxygen supplier 4. Not being provided enough tanks for my activity needs outside of the house 5. Lack of portable systems that I can carry/pull/physically manage 6. Lack of portable systems that provide high enough continuous liter flow 7. Not getting or having problems getting oxygen for my travel needs 8. Getting enough portable oxygen so that I can continue to work 9. I used to use liquid oxygen but my supplier no longer offers it 10. I need liquid oxygen because it offers high flow and portability but it is not available to me 11. The medical equipment company does not respond to my calls and / or needs. 12. I received oxygen bills that were more than the amount explained to me. 13. Not being able to mix systems, for example tanks and POC, or small and large tanks 14. Not being able to change oxygen companies 15. Other: (please specify) E17

18 E. Have you asked your oxygen company to arrange oxygen for you when traveling within the United States? 1. Yes 2. No; skip to question G F. When you have tried to arrange travel with oxygen within the U.S., was it successful? 1. Yes; my supplier set up the arrangements for travel 2. No; I had to make my own arrangements or find a company at my travel destination 3. Other: G. If there was one thing you could change to improve your home oxygen experience it would be: 1. Give me more portable tanks/supplies so I can leave the house more frequently and for longer periods of time 2. Help me by providing a POC when I travel 3. Decrease my monthly co-pay 4. Deliver my tanks/equipment when they say they will 5. Provide me better quality equipment that is reliable 6. Service or check my equipment on a regular basis 7. Provide me liquid oxygen so that I can have higher continuous flow that I can refill myself 8. Provide prompt and professional customer service when I need it. 9. Other: (please specify) H. Have you ever called your oxygen supplier to report a problem with your supplemental oxygen equipment? 1. Yes 2. No -skip to question J I. When you have called your oxygen supplier to report a problem, was the issue resolved? 1. The problem has always been resolved 2. The problem has usually been resolved E18

19 3. The problem has rarely been resolved 4. The problem has never been resolved J. Please select what best describes the person who delivers your oxygen supplies to you 1. The person is a driver who is unable to answer any questions about how to use my equipment and does not test my oxygen saturations while I am using it either at rest or during activity 2. The person is a technician who can help me with problems about my equipment but does not test my oxygen saturations while I am using it either at rest or during activity 3. The person is a technician or respiratory therapist who can help me with problems about my equipment and is also able to test my oxygen saturations while I am using it either at rest or during activity 4. Does not apply to me- I pick up my own oxygen tanks 5. Not sure K. What is the longest amount of time you have had to wait for your oxygen supplies or repair service to arrive after the scheduled appointment time? 1. time. My supplies or service technician always arrive on time or within an hour of the appointed hrs hrs hrs days days 7. More than 1 week (i.e., 8-14 days) 8. More than 2 weeks (i.e., days) 9. More than 3 weeks (i.e., 22 days or more) L. Whe n you call your oxygen provider, about how long do you typically wait on the phone until you can talk to somebody knowledgeable about your question? 1. I never have to wait E19

20 2. 15 minutes minutes minutes 5. More than 60 minutes 6. Even after waiting, I never or rarely am able to talk to somebody who can answer my questions. M. Have you ever filed a complaint with MEDICARE, a Medicare Ombudsman, or the COPD Info Line to report a problem with your supplemental oxygen? 1. No, I did not know there was a number or person to call 2. No, I am aware of the number but I have never called to report a problem 3. Yes I have called and filed a complaint N. If you called MEDICARE, or Ombudsman or COPD InfoLine to file a complaint, was the issue resolved? 1. I have never called to report a problem 2. Yes I called and the issue was resolved 3. Yes I called but the issue was never resolved O. Which oxygen company do you use? 1. Apria 2. Lincare 3. Pacific Pulmonary Services 4. Not sure 5. Other (write name here): P. Do you live in a Competitive Bidding Area? (An area under a particular type of payment system to your oxygen company) If you are unsure and would like to find out please click on and enter your zip code. E20

21 1. 1. Yes No Unsure IV. Is there some issue, other than those mentioned above, that you are having related to your supplemental oxygen? Please describe the problem and what would be most helpful to you. Thank you very much for your time completing this survey! If you are currently having difficulty accessing necessary oxygen supplies and equipment, you can call the COPD Information Line at (866) The trained peer associations will capture your concerns and assist wherever possible. Anyone who uses oxygen can contact the Information Line but, if you prefer, you can contact the patient advocacy organization partner you are most familiar with and explain your concerns. _ E21

22 E3 Online Supplement: Sample Disposition E22

23 E4 Online Supplement: Numbers of respondents by state E23

24 Table E1 Online Supplement: Problems Yes/No by Geographic Regions in the United States* (n=1746) Census Regions and Divisions of the United States Reported Problems n (%) Total Sample n (%) P Value Four United States Regions Yes No Northwest 158 (52) 305 (18) 305 (18) Midwest 174 (48) 362 (21)) 362 (21)) South 284 (50) 572 (33) 572 (33) West 283 (56) 507 (33) 507 (33) Nine United States Regions Yes No West Pacific 193 (56) 149 (44) 342 (20) West Mountain 90 (54) 75 (46) 165 (10) Midwest West North Central 60 (46) 69 (54) 129 (7) Midwest West South Central 73 (43) 98 (57) 171 (10) South East South Central 38 (48) 41 (52) 79 (45) South Atlantic 173 (54) 149 (46) 322 (18) Northeast North Central 114 (49) 119(51) 233 (130 Northeast Middle Atlantic 119 (54) 102 (46) 221 (13) Northeast New England 39 (46) 45 (554) 84 (5) * E24