Table 3 Barriers to the implementation of e-PROMs
Grol’s Framework Themes | Subthemes | Quotes from Focus Groups |
|---|---|---|
Patient | “Digital literacy” | “e-PROMs are not a burden on the patient.” Physician P “First, the average person in Italy is not at all digitized.“ Physician C “They are old people who are not… familiar with these technological things anyway.“ Physician C |
“PROXY e-PROMS” | “I am worried. It is not about outpatients, who in theory should be a little better, but very complicated home patients, who are sometimes very sick.” Nurse G “Many will not be able to fill out the e-PROMs.“ Nurse S “Even patients who are younger, that you can have a dialog with… but there are patients who are in the very late stage of the disease or who are of a certain age that if I go and give them one more thing, it becomes a bit more difficult for them but also for us. I do not know.“ Nurse G “It all depends on one patient to another because each patient has his own problems and difficulties and so you also have to account for that many times it might not be self-filled in… but be filled in by the family member.“ Physician C “However, in the end when the patient does not make it… you have to work on the perception of the relative…” Nurse S “The problem is that the perception of the relative is different from that of the patient.“ Physician P | |
Individual professional | HPC’s lack of knowledge | “Mentality is difficult to change after years and years of various categories of generations.“ Nurse G “Because if it is a PROMS that gets filed and afterward I do not even see it, who cares that I filled out a PROMS? It becomes like the… what’s it called…. the satisfaction questionnaire that gets filed and nobody looks at it, so much so that nobody fills it out.“ Physician D “We have no experience, so… I do not know if they can be used by us!“ Physician C “If we see it as an additional burden you do not need the PROMS to be filled in every time”. Physician C “The filling in during the visit is very difficult.“ Physician P “In my opinion for the purposes of quality of care, it matters much more the direct relationship of the problems to be addressed with the professionals, more than… the IPOS. I see it more as something that could be useful but more for the purposes of standardization, as it was said before, of education, which are the various areas to be investigated; but to use it as a tool, as a facilitator…” Physician M “I’m not saying the timing, the timing. The risk I see is that it becomes just a routine thing anyway, done just to do it.“ Nurse D “In my opinion, we need to remove bureaucracy and not increase it.“ Nurse G |
e-PROMS and standardization of care | “All this stuff here, which maybe could… which is the heart of our assistance, could come a little bit less.“ Nurse S “It might get in the way because all the things we do, all the soft skills we put in… the field might not be as good.“ Nurse I “It is complicated to follow a chart, the visit is so subjective, so articulate and natural.“ Physician C | |
Social context | The palliative cancer care setting | “If you propose this to them on the ward and in the hospital, and make them do it, I think they will fill in or self-complete because they feel a little bit in awe anyway.“ Physician P “I do not know if home care is a suitable setting for this type of PROMs.“ Physician P “When we go home we must always remember that we are guests.“ Physician C |
The intangibility of end-of-life care | “What can we do truly effectively to improve the condition.“ Nurse G “However, objectively how many times do we do it? So many words of support and that is it, and our presence is not an intervention. You do not do anything clinically, but… the patient is happy like that.“ Nurse S “The beauty of our care is that there are no limits. There are no boundaries, and what we do is what the patient wants to do at that moment.“ Nurse G | |
Organizational context | Always busy from overwork | “Already filled out this form, start a quarter of an hour at the first visit, ten minutes, five minutes at the end. Therefore, I have to do a lot of thing, and e-PROMs could take too much time.” Nurse S “I am afraid that the e-PROMs may take up my time during the visit.” Nurse I |
Improper technological infrastructures | “We have very slow computer systems.” Physician C “We cannot objectively enter everything in real time, at home to access the file takes a long time, so you do not use it”. Nurse S “I would need PROMs reports ready immediately, easy to understand and visible right away” Nurse S |