Table 3.
Major Themes and Subthemes With Representative Quotations From the Patient and Caregiver Focus Groups
| Theme | Subthemes | ||||
|---|---|---|---|---|---|
| Comprehensive, Patient-Centered Medical Care | All-Inclusive | Patient-Centered | Timely and Efficient | Assistance With Prescriptions and Insurance Companies | |
| Excerpts | “They have in one building just about everything necessary. All of the diagnostic equipment; they have a blood lab; they have all kinds of scanning equipment. Of course, they have the equipment to test your breathing. Of course, they have the physicians there to meet with you after your tests are completed, so they go over your diagnosis and discuss a treatment plan . . . everything is in one building for all of your pulmonary diagnoses and treatments.” “To me, to be able to go somewhere that they have all of the necessary specialties to provide complete diagnostic and treatment-option discussions, that really should be done in a day because of the psychological impact . . . the more quickly that you can get a definitive diagnosis, to me would be very important.” |
“Very, very integrated and focused on the patient.” “Being a patient-centered facility rather than a doctor-centered facility.” “The idea of doctors being cued in to compassion and not just talking about the data or the interest in data in their research . . . also to remember that these are patients.” |
“I think if I had had a place to go, and no matter how long it took me . . . but just to be able to stay in one spot and be able to get it done and know, ‘Okay. This is it. This is what’s happening’ to me is very important.” “For us, because we fatigue so easily and get so short of breath, the least amount of travel and appointment times would be ideal.” |
“Maybe somebody who would go through insurance or check your insurance for the different medications.” “It would be great if there was somebody that can look into your insurance benefits.” “I think that a good clinic would have a more competent staffing level to deal with prescriptions for medication, prescriptions for oxygen, and prescriptions for rehab.” |
|
| Expanded Access to Care | Communication | Geographic Considerations and Travel | Pulmonary Rehabilitation | Clinical Trials Participation | |
| Excerpts | “I would advise people to sign up for the . . . patient portal, to get familiar with that process, it makes things a lot easier in contacting doctors and/or their staff . . . its just an easy, easy way of communicating and not having to be on the phone for minutes at a time waiting for someone to answer or someone to call you back.” “I just feel like I can always reach out to her and ask her any questions, and she always gets back to me.” |
“Its gonna go always to me location, location, location, you know what I mean? Wherever they’re located at makes it easier. If I can get there within an hour, that’s nice, but if I have to drive 6 hours to get to the place, once again, its just a hard thing.” “I had to go out of state to get any help whatsoever.” “But that could be just because I’m so far and remote from any facility. I’m so far away to the facility.” |
“I think that would be my biggest complaint about any clinic is where is your pulmonary rehab and how can we get people there easy. These people don’t travel well in the first place, and then they have to go so far to get—what I consider is one of the treatments for pulmonary fibrosis, is pulmonary rehab.” “It took me actually 9 months to find a pulmonary rehab that was not too far away from us . . . most of ’em are [1] hour and a half, 2 hours away, which is kinda far when you’re going two to three times a week.” |
“I would love to get into a trial . . . I mean, that’s how we’re gonna beat this thing, you know, and to slow down the progression and to make things better for other people. Trials are extremely important.” “I believe that most patients would be very happy to participate in trials if they were offered that participation in a hope that we might be able to, you know, help make some discoveries that will, if not prevent other people from having the condition in the future, at least to come up with some better treatment options.” |
|
| Comprehensive Support for Living and Coping With Interstitial Lung Disease | Patient Advocate | Disease Education | Counseling and Support Services | Patient Support Groups | Supplemental Oxygen |
| Excerpts | “First of all, they come in and tell that patient that they’re not alone.” “It would be somebody that you would feel comfortable going to with multiple questions . . . that would have access and obviously enough knowledge about the disease to know the next step that you’re looking for or in need of.” “Having somebody who essentially knows you, that maybe periodically would touch base with us if we haven’t been in clinic in a month or two. Even if it’s a phone call saying, ‘Whad’ya need?’ Or, you know, just, ‘Let me know if you need something. I’ll try to find it and tell you where to go and get it.’” “If there was some sort of patient ambassador that people can have where there are so many questions that a patient will have afterwards . . . that coordinate the questions and to be able to pass on information to the patients or the families to get them pointed in the right direction when they have these different questions.” “You always know you can call up this person and whether its getting a doctor’s appointment scheduled, or getting a referral or getting a new medication or medication refill, if it’s questions about insurance . . . to have somebody as a primary point of contact to coordinate all of these different things, whether its them being able to answer the question or just getting you pointed in the right direction to find that answer is something that would be very valuable.” |
“I think on that first visit, there needs to be more information given, like that fact sheet of—you can get an IPF fact sheet. That needs to be handed out.” “Things like where you can buy an oximeter and what oximeter is good to get, things like that just right off the bat are good things to get, and books to read . . . that they can start learning and preparing themselves. If they can be prepared right off the bat with stuff, I think, to me, is an ideal clinic.“ “As soon as you get a diagnosis like IPF, I know that my first inclination is to Google the disease and there’s a lot of bad information out there, inaccurate information, and scary information . . . it’s up to the patient to seek these things out most of the time, as opposed to maybe one center having all these things and not only providing the services but also giving an explanation of why these things are important.” “The most important things they could do would be to make the patient aware of the organizations that exist to help support patients who have ILD.” |
“There would be counsellors, counselling services there because you’re being given a death sentence. That is the biggest shock in the entire world to have that happen.” “There’s got to be some help there, emotional help, as much as the physical-medical aspect of it.” “A psychologist or a therapist. Whatever you wanna call it because, I mean, really and truly, you are filled with emotions of all different kinds. Panic, fear, sadness. You know? Just totally in awe about everything. And your life’s been turned upside down.” “The coordination of mental health . . . as part of the staff too where they can coordinate with the patient to, I guess, understand, cope with, get adjusted to this new way of life and being given this diagnosis.” |
“This is the opportunity to interact very closely with other people who are similarly situated. You know, it’s a great source of support as well as information . . . You can get together on a regular basis with a group of folks, who are similarly situated, and you’ll find it to be a very beneficial just to be able to spend time together and compare notes. That, to me, I think is a very important part of the support that would be provided by this center.” “I think a support group is critical in your area in some way. It doesn’t have to be at your center, but I think also, what I’m hearing more and more is if there could be a period support session just for caregivers, not with the patients attending, ’cause caregivers often face unique circumstances, and sometimes, its helpful for them to share strategies.” |
“Having an advocate to say ‘I’m here to help you get your oxygen, to tell you where’s the best place for you to go. Or, here’s the different places that you can go to get your oxygen, here are the different types of concentrators.’ That stuff, I just had no clue about. I did not know anything about it. I did not know where to go to find the oxygen . . . those things would be so helpful if somebody had some ideas about it and could help.” “Since oxygen is prescribed, it would be nice to be able to get a prescription that would start out with a POC, a pulmonary oxygen concentrator.” “Someone who can get you through the ropes of dragging the equipment through the airport . . . I was having to do all of this by myself because there was nobody to help me.” “One of the things they discussed and I found most beneficial was traveling with the condition and having to drag your equipment along with you.” |
ILD = interstitial lung disease; IPF = idiopathic pulmonary fibrosis.