Introduction
Methods
Study setting and participants
Data collection
Data analysis
Results
Patient characteristics
Setting | Focus group 1 | Focus group 2 | Focus group 3 | Total |
---|---|---|---|---|
Erasmus MC | Maasstad Hospital | Erasmus MC | ||
Participants—n | 8 | 6 | 6 | 20 |
Age (years) | ||||
Median (IQR) | 34 (20–48) | 28 (27–57) | 33 (31–40) | 31 (24–48) |
Min, max | 19, 63 | 21, 62 | 20, 63 | 19, 63 |
Female—n (%) | 5 (64)a | 4 (67) | 2 (33) | 11 (55) |
Current treatment—n (%) | ||||
Topical | 1 (12.5) | 2 (33) | 1 (17) | 4 (20) |
Systemic immunosuppressant | 5 (63) | 4 (67) | 2 (33) | 11 (55) |
Biologic | 2 (25) | 0 (0) | 3 (50) | 5 (25) |
Self-reported impact of disease—n (%) | ||||
Very low | 1 (12.5) | 0 (0) | 2 (33) | 3 (15) |
Low | 2 (25) | 0 (0) | 0 (0) | 2 (10) |
Neutral | 1 (12.5) | 2 (33) | 0 (0) | 3 (15) |
High | 2 (25) | 1 (17) | 1 (17) | 4 (20) |
Very high | 2 (25) | 3 (50) | 3 (50) | 8 (40) |
Patients’ needs and experiences in AD care: a patient-tailored approach
The consultations with physicians
Need for recognition of the physical and emotional impact of AD
‘The moment you tell your physician that this is a real issue in your life, that it really is all-consuming, and your physician responds with “oh well, it’s not that bad”. It feels like a slap in the face.’- focus group (FG) 1
Need for increased role of patients in determining disease impact
‘AD does not only feel like a struggle against your own body, but it is also a struggle to be taken seriously and to prove that you are eligible for certain therapies instead of being sent home with another ointment.’ – FG 3
A personal approach and adequate communication are essential for a good doctor–patient relationship
‘It feels so good that my physician takes time for me, because my experiences with previous physicians was like ‘here are your ointments, good luck.’ – FG 2
The organization of AD care
Need for psychosocial and medical supportive care
‘A physician has limited time during a consultation, I do understand that, but sometimes you are feeling so bad and so itchy, and everything that comes with that. It is a real problem and feels like a handicap. In situations like this, an additional appointment with a nurse who has time to listen to your story, who is in close contact with your physician, and could potentially discuss any important considerations, would be really appreciated.’ – FG2
Need for quick access to health care in AD care
‘My doctor tells me ‘Do call us if it gets worse’. And when I do, the assistant tells me my doctor is not available, but that I can get consultation by phone. Well, that easily takes three days and by the time I can speak to my doctor my symptoms have reduced.’ – FG 1
The therapeutic decision-making process
Need for adequate, understandable, and tailored information
‘I hear the same advice all the time: “you should not shower too often, not too warm and not too long; don’t use soap”. It is so annoying to hear this for the eighth time…’—FG 2
Varying views on the preferred role of patient and physician
‘I prefer it to be an interaction between me and my physician, in which I also have a say. I know myself best and I read up on specific therapies.’—FG1
‘I often feel like ‘Oh well, you are the professional, so tell me what would be best.’—FG2
Decisive factors for choices within the decision-making process
‘I always weigh the options: it is either one thing or the other. If I want to get rid of my eczema, I need to accept certain side effects.’—FG1
Indication for next steps within AD treatment should be patient dependent
‘If someone is really suffering and they cannot even leave their bed and are not able to participate in normal life due to their eczema, then the physician should be able to skip a few steps in the treatment process.’—FG 2
Varying preferences on setting treatment goals
‘The physician can also not guarantee that my eczema will disappear completely. So setting big goals is an illusion for me because I find it difficult to know whether I am able to achieve that goal.’—FG2