Cancer Care Team’s Management of Clinical Alerts Generated by Electronically Collected Patient Reported Outcomes: We Could Do Better
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design and Participants
2.2. The PROMPT-Care 2.0 Intervention–Clinical Alerts
2.3. Procedures
2.4. Outcome Measures
2.4.1. Clinical Alert Activity and Cancer Care Team Response
2.4.2. Patient Perceptions of the CCT Responses
2.5. Analysis
3. Results
3.1. Participant Characteristics
3.2. Clinical Alert Activity and Response
3.2.1. Clinical Alerts and Breached Items
3.2.2. Cancer Care Team Responses to Clinical Alerts
3.2.3. Participant Evaluation Surveys
3.3. Qualitative Findings
3.3.1. Overarching Theme: Multiple Perceived Benefits from the Cancer Care Team Call for Most Patients
I suppose there are so many people like me in the hospital system. It’s like you do feel you become a number. It just made me feel important, like I mattered, my treatment mattered, and care mattered… not just paperwork and then filed. There was an actual result from someone rang me up and quite quickly actually. I was very impressed with that. I think it is important that people think that their treatment—it’s not just a number. They’re treating people not just numbers.(L136)
3.3.2. Main Themes
- Feeling cared for
- Valuable referrals to HCPs
- Other benefits
- Necessity of the PROMPT-Care phone call
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A
Appendix B
‘I think it’s really good because I think it [receiving a call after completing the survey] gives you a bit of confidence that there are people there who cared about your wellbeing, they’re checking up on you between the doctor’s visits and you might have an issue that they either say, “Well, look, I’ve got a bit of bone pain,” or something like that, so they’ll say, “Oh, okay,” and then investigate it a bit more and get a bit of feedback, take it in and pass onto the doctor for your next visit. So, I think anything with PROMPT-Care is good. I can’t say enough about it. It benefits me and it benefits a lot of other people and it’s a good system.’(M064)
‘…it’s just like genuine care [the phone call]. They’re genuine, and I don’t know if it’s because it’s cancer or what, but you don’t seem to get that with other problems… they take the time out to ring and check up on you. …… I just really appreciated it.’(M123)
‘…you really need to feel that someone is checking on you, and I felt that through the survey. I knew that I had that and that it was coming regularly.’(L082)
‘I know someone would ring me. When I filled out the surveys, someone was going to ring me and discuss it with me, even if it was me not understanding and I think that’s really important because sometimes not everybody gets a chance to get to the doctor or look up on the internet which is probably more dangerous…’(L136)
‘So, the nurse calls me up and she asks me a few questions and I think, “Oh, okay, that’s nice.” They’re looking after me even when I’m far away… so it’s reassuring.’(M064)
‘If you’re very worried what’s happened to you, even though the way the treatment of your cancer is getting well but still you’re not convinced that it is going well, it’s good to have communication through this survey to reassure you of whatever your problem is.’(I020)
‘Well, to know that someone’s interested in my case, it’s an amazing factor, it alleviates some of the worry that I’ve had. I think it’s been very helpful that you get feedback from them.’(L140)
‘…I did have an issue there at one stage where everything was tasting wrong and I just didn’t have an appetite and this and that, and I noted down and [nurse name] rang me within a couple of days and she said, “Oh, do you want me to make an appointment with a dietician for you?” and I said “Yes, please.” So she did that, she made the appointment I went to go and see the dietician… and it was really good… So she [nurse who made the PROMPT-Care call] pointed me in the right direction…’(L037)
‘I was lucky that I actually did this PROMPT survey and that the [nurse] got on to it straightaway and got actions for me [referral to the Wellness Centre and acupuncture sessions]. Now, I’m really grateful for that.’(L082)
‘It was good that they saw that I indicated the depression was on the higher side and they gave me a referral to see a psychologist…’(L140)
- A.
- Useful in between doctor’s appointments
‘I think it’s very important [the phone call] because—it’s something about my experience but my problem is that I don’t have a regular GP to talk to all the time, and as I said sometimes when you go to see [your specialist], you feel stressed because you know he has a lot of patients to go through, and you don’t want to worry him down with all your problems and so on. I think it’s a very good way [survey and phone call] of patients that needed to get help and they could express what they’re feeling to the survey.’(I020)
‘So I think it’s good [the survey and phone call]. It’s kind of a doctor’s visit without actually going to the doctor. So they’re asking you the questions, they can see your state of mind and based how you’re feeling and if all is good, “Well, okay, fine. He’s okay.” … Like I say if I tick something and highlights something and say I’m between doctor’s visits, so they may ring up and say, “Well, look, you’ve ticked this, this hasn’t been ticked before. Is it a major concern or anything like that?” and you’ll say, “Well, look, it’s just a little niggly pain I’ve been getting that I didn’t have before,” or something like that. I think it’s good that maybe we can catch something early or it’s nothing to be concerned with…’(M064)
- B.
- Improved communication with CCT
‘So, knowing that there is a phone call for when you’re really feeling a bit low or something is wrong that you’re not—you can talk to someone who understands what you’re talking about because they’ve seen it and experienced a lot of other patients having the same things. Well, I think that’s important. So, yeah, it’s a good service.’(L094)
‘… it was just someone different to talk to that knew about what treatment you’d been through and your care afterwards, basically, and your wellbeing after your treatment.’(S012)
‘…a lot of times that I received that call, although I appreciated the call, I didn’t really need the call.’ I appreciate—definitely appreciated the call ‘cause I know that they’re watching, but to—I mean, even for them, I know ‘cause they’re really busy… but still in saying that I didn’t really need the call, it was nice that they did call because I know that they’re actually reading it.’(M108)
‘Interviewee: …when the results are two or three levels out of normal,—yes, that phone call is really appreciated and it matters… only for the ones that are really obviously out of normal range—are sicker than usual, more nausea, or really important issues—diarrhoea, constipation, vomiting, all those sorts of things. That’s the sort of thing where you need advice…’(M028)
- A.
- Including a question about the need for being phoned or not
‘I think it will be good because then you can indicate whether you want to be contacted or not, so I think it’s a good question… It would be useful, yeah.’(I020)
‘That probably would be helpful, but then again, as I said to you, sometimes you think that you’re just having a bad day, and it might be a little bit more than that ….. that’s my only concern.’(L013)
‘I think that would be a really good thing, just to say, “I would appreciate a phone call concerning this issue,” or, “There’s no need for a phone call at this time”.’(S018)
‘…if people say no and they really need to be contacted, then you’ve stopped that approach because people will say no when they really do need it, so I don’t know. Just say, “When would be a good time for people to contact you?” something like that, maybe, so that you’re not asking them to say no.’(M048)
- B.
- Unexpected but positive call
‘…it was actually a surprise for me when I was phoned the next day. It was a surprise and I was very grateful for that.’(L082)
‘I’m kind of amazed. The first time I got the call, I was a bit surprised that I got a call…’(L090)
‘…I was a bit surprised. I wasn’t expecting it and then I thought to myself, I was like, “Oh, that’s what that was from,” so I probably was a little bit taken back because I hadn’t initiated it, but in some ways, I thought it was good that someone was checking in on me as well.’(M048)
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Characteristics | n (%) |
---|---|
Age (years), mean (range) | 62.4 (25–86) |
Sex, n (%) | |
Male | 133 (40.6) |
Female | 195 (59.5) |
Site of cancer | |
Breast | 132 (40.2) |
Prostate | 51 (15.6) |
Colorectal | 37 (11.3) |
Respiratory | 29 (8.8) |
Gynaecological | 16 (4.9) |
Upper gastrointestinal | 15 (4.6) |
Skin | 11 (3.4) |
Oral | 10 (3.1) |
Other | 27 (8.2) |
Stage of disease | |
0/I | 66 (22.1) |
II | 90 (27.4) |
III | 57 (17.4) |
IV | 80 (24.4) |
Missing | 35 (10.7) |
Treatment status | |
Active treatment b | 139 (42.4) |
Follow-up care | 189 (57.6) |
Socioeconomic status (IRSD) c | |
1 | 54 (16.4) |
2 | 97 (29.6) |
3 | 52 (15.9) |
4 | 35 (10.7) |
5 | 90 (27.4) |
Relationship status a | |
Single | 71 (23.1) |
Partnered | 236 (76.9) |
Education status a | |
High school or less | 122 (39.7) |
Post-secondary education | 185 (60.3) |
Employment a | |
Employed | 129 (42) |
Retired | 155 (50.5) |
Other | 23 (7.5) |
Referral | Total Offered | Accepted |
---|---|---|
Clinical psychology | 55 | 18 (32.7) |
Dietetics | 11 | 8 (72.7) |
Social work | 9 | 2 (22.2) |
Physiotherapy | 3 | 3 (100) |
Prostate cancer nurse | 3 | 3 (100) |
Medical oncology | 2 | 2 (100) |
Unknown * | 3 | 0 |
Total | 86 | 36 (41.9) |
3 Months | 6 Months | 9 Months | ||||
---|---|---|---|---|---|---|
(n = 221) | (n = 78) | (n = 93) | ||||
n | % | n | % | n | % | |
Do you recall receiving a phone call from the nursing team at your Cancer Care Centre in response to your PROMPT-Care assessments? | ||||||
Yes | 72 | 32.6 | 21 | 26.9 | 26 | 28 |
I found receiving a phone call from the nursing team at my Cancer Care Centre beneficial | ||||||
Strongly Agree/Agree | 58 | 80.6 | 17 | 81.0 | 22 | 84.6 |
Neutral | 12 | 16.7 | 3 | 14.3 | 3 | 11.5 |
Strongly Disagree/Disagree | 2 | 2.8 | 1 | 4.8 | 1 | 3.8 |
The phone call from the nursing team helped me deal with ongoing problems I was experiencing | ||||||
Strongly Agree/Agree | 46 | 63.9 | 12 | 57.1 | 17 | 65.4 |
Neutral | 22 | 30.6 | 7 | 33.3 | 8 | 30.8 |
Strongly Disagree/Disagree | 4 | 5.6 | 2 | 9.5 | 1 | 3.8 |
Contact with my Cancer Care Centre linked me back to appropriate support services to help with my problems (e.g., Dietitian, Psychologist) | ||||||
Strongly Agree/Agree | 45 | 62.5 | 8 | 38.1 | 18 | 69.2 |
Neutral | 22 | 30.6 | 9 | 42.9 | 7 | 26.9 |
Strongly Disagree/Disagree | 5 | 6.9 | 3 | 14.3 | 1 | 3.8 |
The nursing team provided me with enough information and support | ||||||
Strongly Agree/Agree | 59 | 81.9 | 14 | 66.7 | 21.0 | 80.8 |
Neutral | 12 | 16.7 | 6 | 28.6 | 4.0 | 15.4 |
Strongly Disagree/Disagree | 1 | 1.4 | 1 | 4.8 | 1.0 | 3.8 |
I would have preferred not to receive a phone call from the nursing team in response to my PROMPT-Care assessments | ||||||
Strongly Agree/Agree | 6 | 8.3 | 1 | 4.8 | 2 | 7.7 |
Neutral | 8 | 11.1 | 3 | 14.3 | 4 | 15.4 |
Strongly Disagree/Disagree | 58 | 80.6 | 17 | 81 | 20 | 76.9 |
I would have preferred to be able to contact the nursing team when I needed assistance | ||||||
Strongly Agree/Agree | 26 | 36.1 | 7 | 33.3 | 5 | 19.2 |
Neutral | 22 | 30.6 | 7 | 33.3 | 11 | 42.3 |
Strongly Disagree/Disagree | 23 | 31.9 | 7 | 33.3 | 10 | 38.5 |
I found receiving a phone call from the nursing team bothersome | ||||||
Strongly Agree/Agree | 3 | 4.2 | 1 | 4.8 | 1 | 3.8 |
Neutral | 8 | 11.1 | 1 | 4.8 | 2 | 7.7 |
Strongly Disagree/Disagree | 61 | 84.7 | 19 | 90.5 | 23 | 88.5 |
The phone call from the nursing team facilitated better communication with my Cancer Care Centre on how I was doing | ||||||
Strongly Agree/Agree | 45 | 62.5 | 14 | 66.7 | 15 | 57.7 |
Neutral | 20 | 27.8 | 5 | 23.8 | 11 | 42.3 |
Strongly Disagree/Disagree | 5 | 6.9 | 2 | 9.5 | - | - |
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Rincones, O.; Bamgboje-Ayodele, A.; Arnold, A.; Delaney, G.P.; Durcinoska, I.; Avery, S.; Sandell, T.; Della-Fiorentina, S.A.; Pearson, J.; The PROMPT-Care Co-Authorship Group; et al. Cancer Care Team’s Management of Clinical Alerts Generated by Electronically Collected Patient Reported Outcomes: We Could Do Better. Int. J. Environ. Res. Public Health 2023, 20, 2001. https://doi.org/10.3390/ijerph20032001
Rincones O, Bamgboje-Ayodele A, Arnold A, Delaney GP, Durcinoska I, Avery S, Sandell T, Della-Fiorentina SA, Pearson J, The PROMPT-Care Co-Authorship Group, et al. Cancer Care Team’s Management of Clinical Alerts Generated by Electronically Collected Patient Reported Outcomes: We Could Do Better. International Journal of Environmental Research and Public Health. 2023; 20(3):2001. https://doi.org/10.3390/ijerph20032001
Chicago/Turabian StyleRincones, Orlando, Adeola Bamgboje-Ayodele, Anthony Arnold, Geoff P. Delaney, Ivana Durcinoska, Sandra Avery, Tiffany Sandell, Stephen A. Della-Fiorentina, Joanne Pearson, The PROMPT-Care Co-Authorship Group, and et al. 2023. "Cancer Care Team’s Management of Clinical Alerts Generated by Electronically Collected Patient Reported Outcomes: We Could Do Better" International Journal of Environmental Research and Public Health 20, no. 3: 2001. https://doi.org/10.3390/ijerph20032001