Table 4.
Key educational topics
| Theme | Quotes |
|
|---|---|---|
| Patients | Healthcare Professionals | |
| Pathophysiology of ILD | “I don’t know what interstitial lung disease is. I would have liked a more basic approach in saying this is what’s going on and this is where you can learn more about it....” IPF patient (focus group 1) | “[T]alk about what’s known about it in terms of known causes, if any, and then anatomy, inflammation or fibrosis, depending on what the disorder is. Then get into specifics about each disease.” Pulmonologist (interview 5) |
| Management of symptoms | “Especially how to cope on a day-to-day basis because you basically, with this progressive disease, you’re basically constantly making adjustments for your lack of function. I guess you use the word coping, you use the word compromising or accommodating yourself. What are some of the tricks in doing that to alleviate the frustration and to be able to function as well as you can for as long as you can?” Non-IPF patient (focus group 1) | “What do you do if your symptoms are starting to overwhelm you? I think that’s really important for IPF. I [teach] it [to] everybody, but I know IPF patients can go from basically feeling healthy to really symptomatic on a dime.” Nurse (interview 3) |
| Clinical tests | “We live and die by lung capacity and DlCO. You should know what your lung capacity and your DlCO is so that you can follow your own progress.…” IPF patient (focus group 2) | “[P]atients often have questions regarding the investigation they need to go through, ‘Why do I need to see a rheumatologist?’ They want to know what tests they need to do and why.…” Pulmonologist (interview 10) |
| Autonomy | “[R]ehab should promote self-sufficiency. We’ve really talked about all of this. What are the resources? What are the websites? What can you do to enhance your health? One the things that has helped me is to understand the diagnosis and its progression and its possible origins, and all those things are, whatever pieces there are, help me to understand how I can construct this program to enhance my health.” IPF patient (focus group 2) | “I wish patients could be able to define the disease and consider all of the modifiable factors, be able to recognize them. Better yet, in the program we want patients to be able to name those behaviors and also change their behaviors and integrate this knowledge to their everyday life; we want them to be as self-sufficient as possible and be able adequately take charge [of] their disease.” Pulmonologist (interview 9) |
| Oxygen use | “The one thing that I’ve always struggled with is oxygen use and things of that sort and what are the goals.” Non-IPF patient (focus group 4) | “Why is the oxygen equipment so important? And they [say], ‘Because it’s our lifeline.’ Oxygen moves from being something sort of repulsive to them to being a lifeline for them. It becomes a very important thing.…” Nurse (interview 1) |
| Medications | “All of us probably take something that is pill form, and there was no particular discussion of those and the side effects.…” Non-IPF patient (focus group 3) | “I think people need to know how to take these and what to watch out for. People on immunosuppressants need to be reminded that they need monthly blood draws and why, and what to watch out for, so I think it’s an important topic, definitely.” Nurse (interview 8) |
| End-of-life counseling | “[I]n the back of my mind, forever since my diagnosis was, how does one die from this disease? Nobody ever explained to me how do you die. I mean, what’s the reality of it? Does it hurt? Does it not hurt? Is it like drowning? All that stuff. Is there anything that can be done to alleviate the suffering in the process? I think that has to be explained.…” IPF patient (focus group 1) | “I feel like patients appreciate when we discuss end of life. At first it may scare them, but when we develop a relationship with them, they feel more comfortable. It answers many of their questions, and they talk about it with their families…. They feel more confident to address the issue with their families, and that is important….” Kinesiologist (interview 6) |
Definition of abbreviations: DlCO = diffusing capacity of the lung for carbon monoxide; ILD = interstitial lung disease; IPF = idiopathic pulmonary fibrosis.