Plain English Summary
Introduction
Methods
Institutional review board (IRB)
Study setting
Planned process: Knowledge to Action framework
Study participants
KTA knowledge creation steps
Phase 1: Knowledge Inquiry
Interviews with patients
Interview data analysis
Delphi panel with pharmacists
Delphi panel data analysis
Phase 2: Knowledge Synthesis
Selecting PROM items
Programming EHR SmartForm©
Phase 3: Knowledge Tailoring
Usability testing rounds
Usability testing data analysis
Results
Phase 1: Knowledge Inquiry
Interviews with patients
Characteristic | Breast (n=12) n (%) | Thoracic (n=12) n (%) | Hematology (n=12) n (%) |
---|---|---|---|
Women | 10 (83) | 6 (50) | 6 (50) |
Men | 2 (17) | 6 (50) | 6 (50) |
Non-Hispanic White | 4 (33) | 8 (75) | 6 (50) |
Non-Hispanic Black | 4 (33) | 3 (25) | 5 (42) |
Non-Hispanic other race | 4 (33) | 1 (8) | 1 (8) |
Age 65 and older | 7 (58) | 8 (75) | 6 (50) |
Completed interview by video call | 5 (42) | 7 (58) | 2 (17) |
Completed interview by phone | 7 (58) | 5 (42) | 10 (83) |
Theme | Patients with breast cancer | Patients with thoracic cancers | Patients with hematology cancers |
---|---|---|---|
Which symptoms should be prioritized in the EHR SmartForm© PROM | Mouth sores: “I would say.. the mouth sores… I think they should ask other people if they’re having the same” | Flushing, appetite, bloating, fatigue: “Then the comfortability of the flushing and sweating, and then the appetite and bloating and feeling tired because those are all the things I’ve been feeling” | Dyspnea: “If I were a patient and didn’t know what I know, I would want somebody to tell me, “If you have trouble breathing, you need to seek help” |
Diarrhea: “I would say hot flashes and loose stool diarrhea” | Nausea, vomiting, diarrhea, losing weight: “I’m continuing to have nausea and diarrhea. I’ve lost 30 pounds, so I can’t make myself take this stuff [medication]. I got so neurotic about it. When it came time to take it, I would throw it up. This is really neurotic… What we decided to do was I’d take two days off a week, and I did that for a while” | Mucositis: “Yeah. The mucositis is number one. Boy, it’s a bad actor. [Laughter] I would want to know that that was a potential side effect” | |
Neuropathy: "Okay, …is this severe, or making sure—especially with the neuropathy in your hands and feet, that's very important … because you don't want to get to the point that if you don't sit here and tell 'em in time that it get to the point where it'll be just untreated. Because the neuropathy is very serious, and you don't want it to sit here and actually get to the point where it can't be treated. That's real big; the neuropathy” | Nausea, indigestion: “I guess, you might say, like nausea, aches, or whatever, indigestion…” | ||
Fatigue: “I would want them to ask people what the fatigue and maybe being uncomfortable like your joint pains. I wish they would ask more detail about that… like I said, I'm retired, so there's not like a scale from 1 to 10 if my joints are hurting or if it's 1 to 10 if my fatigue is there. Maybe if there was more of a sliding scale type of thing where people can respond in that way. Maybe they can get a better, I don't know, a better thought on how this is affecting people, I guess” | Nausea, bowel movements, sleep: “Well, if they have nausea, if they have with the bowel movements, if there’s any change. If they have nausea, if they have stomach pains, if they have—how are they sleeping” | ||
Weight gain: “Weight gain” | |||
Diarrhea: “The diarrhea. That fluttering in the stomach” | |||
Diarrhea, rash, loss of appetite: “Well, the three main ones I was concerned about was diarrhea, rash, and loss of appetite…” | |||
Prioritize mental health symptoms | “Ask patients about their initial mental state. I also had headaches, confusion and forgetting things and wasn’t sure if it was because of my medication or my cancer” | “I think that the mental health aspect is probably an important thing just to check in on” | “Cause I tell you, it affected my mental state. My ability to do anything was no. It wasn't gonna happen 'cause in my head I was on a ledge. I was on a ledge one time and I almost didn't get off. You know, come down. It was really, really hard for me” |
“Hey, I’m feeling kind of down because of this drug side effect or because now I know I have cancer” | “Oh, my advantages, he encouraged me just keep doing what I'm doing. I like the things they say. They keep my morale up, keep me from going to depression. I don't want to fall back into that mode” | ||
Prioritize whether patients can do their usual activities | “Then, the joint pain, it’s definitely affecting [my activities] me going up and down the stairs in my house. It’s not to the point where I can say, “Oh, I need crutches” or “Oh, I need a cane.” It’s tolerable for the moment. It’s just uncomfortable” | “The doctor was concerned because it [diarrhea] was something that like changin' my lifestyle. Whether I had to take something else to fight it” | “Yeah, they should discuss if they’re havin’, like you just said, which side effect interferes with their daily routine the most and what they wanna—if there’s anything they can do with it” |
“My stomach issues do interfere with some of my activities. I sometimes I have a sense of urgency to go to the bathroom, and then sometimes it happens repeatedly and then that’s when I'll take some medicine to stop it” | “For speaking specifically of [drug name], the fatigue was enough that doing some of the simple physical activities of just working in the yard or some of those types of things—it’s been significant enough that—before, I could go out there and work for hours. Now it would be you work for 5 or 10 min; you gotta sit down and rest. A lot more frequency of resting time and just gettin’ worn out a lot quicker. That’s changed things. It’s such that maybe things that we would’ve done before—more physical like a—I don’t know—don’t go to a concert or something” | “How their daily routine has changed” | |
“I wasn't able to work any during my [oral] chemo. It was just too much going on. I had to get my body back, to be in my strength and everything” | “I initially started out with the full dose, then six, and immediately had terrible nausea and vomiting, awful fatigue, and amazing diarrhea, and thought, if this is my life, it's not worth fighting for. [Laughter] under normal circumstances, I vomit about once every ten years. It's just not somethin' that I'm used to. When I was troubled with that [nausea and vomiting], it was really disruptive. I could compensate for the diarrhea. I could wear the adult diapers and never be more than ten paces from a toilet. I got one of those waterproof things for under my seat, so I didn't have to wash the whole mattress pad and all that. I could compensate for that, but the nausea's just put me down” | “Diarrhea, I was taking the medicine in the morning time, but I was trying to teach school, and it was causing diarrhea. I didn't ever know when it was going to hit, so I started taking the medicine at night and that worked out better, 'cause if it reacted on me then, then it'd be through the night, and I wouldn't have to worry about trying to get out of class and all that” | |
“Like I said, this has been a tough year because the weight loss is what caused the problems. Slowly but surely, I stopped driving a car because I didn’t trust myself. I’m allowed to, but I just felt that I might hurt myself or other people on the road. I’m working on getting myself back upstairs to my own bedroom ‘cause I’ve been sleeping in the downstairs guestroom, and it’s not set up properly. It's one thing for a guest. It’s another thing to live in it. I’m working with physical therapy on that, to get up and down the stairs safely. I went through a period of time where I was falling a lot” | “Well, at this point in my life I really don’t have any responsibilities, and I don’t have many activities, but yes, it has. I don’t have the strength and the stamina to do a lot” | ||
“It is hard. That’s the one a the hardest things that I really struggle with is the fatigue. Some days, I don’t even leave the house’cause I’m just tired” | |||
Recommendations for how to ask patients how they are feeling and functioning | "How are you coming along with your new meds? What can I do to better assist you?" | “It's just having them ask you general questions. Are you having any difficulties with anything or problems with anything. I think having a pharmacist there, that can say, "Oh, this is something that's common or something that this medication can cause. Why don't you try or do this or let me research this and get back to you." I think that's what's important” | “That right there, I would like for them to ask that. What's wrong? What side-effects are you having pertaining to your medicine and stuff? You know what I mean? If they didn't ask, you would never know. I think they should ask” |
“She…this is what she—this is our whole meeting—went down every one the graph with me, every lab with me, and told me what they look at. She was really, really nice. Very detailed. This is what I needed to know from my pharmacist..” | “Unless I report a side-effect, nobody asks me about it” | ||
“Now, I did see some things that were errors that I was gonna let her know. I was reading over her report, and it said that I said that I didn't—that she [patient] denies missing any doses. I never told anybody that. That's a lie. I mean, that's a—she misheard me. I have missed doses. Remember, I—and the doctor—every doctor knows this, that I don't take my medicine correctly. I don't want that on here because that's not fair and that's not right” | |||
Advantages of meeting with a pharmacist | “I guess the only thing I would say is it’s very helpful when you start a new medication to have somebody go over with you what’s a possible side effect could be” | “I guess warning people what to look out for, and I know that’s largely the oncologist’s job. That’s always been really helpful to me to have somebody [pharmacist] tell me before I start taking it what things I should be concerned about” | “I really don't know 'cause the advantage is that she helped me take the medicine and tell you how to take it and make sure you're taking it the right way, eating the proper food and stuff. I didn't see no disadvantage” |
“Well, after having talked to the oncologist and telling him some things I was feeling, and then she [pharmacist] called me, that's the advantage. I think she seems to have a little bit—this is just me speculating—she seems to have more insight into what might really be a side effect. Yeah, you might have a headache, but could it be related to sinuses? Is it constant? Does it feel like this, or does it feel like that? You might be forgetful about somethings, but we all are. Are you losing your balance? Things like that, she just seems to have a little bit more, I don't know, experience or information or whatever with what might be going on” | “That they may be able to pass that information on to the oncologist, and if required to make some changes in dosage or, I don’t know, whatever is needed” | “I think it's very important in the beginning [to talk with a pharmacist. For many of us who have had cancer previous to this, we have expectations when we go in. Those expectations include knowing that things are gonna crop up that we don't expect or don't think, oh, well, that's not gonna bother me very much, and it does. It can be scary for some people. I'm a lucky person” | |
“My pharmacist explains things clearer when—'cause she asks me questions that my doctor doesn't sometimes, and she also, when I talk to her, if I tell her something, my pharmacist always goes back and talks with my doctor. With other pharmacy and she's told me about some of my symptoms, and then she comes back with answers for me. I feel very comfortable talking with [name]” | “I feel like he's [pharmacist]—can make those decisions without having to go back and forth with Dr. [oncologist name] and anybody else. I kind of like that part of it. I guess a negative aspect is there are sometimes where we’ve had conversations or decisions where I’m kind of questioning goin’ “Hmm. Is this the same thing [oncologist name] would say? Are you guys on the same page?” That kind of thing. I definitely see good parts and bad parts” | “I think that’s a good advantage. Because especially for me since I’m not too close to UNC, to get a phone call and be able to discuss the side effects and what I could be doin’ for them, it’s very helpful” |
Delphi panel
Phase 2: Knowledge Synthesis
Comparison of Delphi panel and patient interviews
Domain | Pharmacists | Breast patients | Thoracic patients | Hematology patients | Included in final EHR SmartForm© ? |
---|---|---|---|---|---|
Nausea | X | X | X | X | Yes |
Constipation | X | X | X | X | Yes |
Diarrhea | X | X | X | X | Yes |
Fatigue | X | X | X | X | Yes |
Pain | X | X | X | X | Yes |
Mouth or throat sores | X | X | X | X | Yes |
Rash | X | X | X | X | Yes |
Appetite | X | X | X | X | Yes |
Mental Health | X | X | X | X | No * |
Neuropathy | X | X | X | Yes | |
Dyspnea | X | X | X | Yes | |
Other side effects with a text box | X | X | X | X | Yes |
Trouble doing usual activities | X | X | X | X | Yes |
Medication adherence | X | Yes ** |