Skip to main content

Table 1 Anchor examples for the “relationship between the patient and physician”

From: Integrating patient perspectives in medical decision-making: a qualitative interview study examining potentials within the rare disease information exchange process in practice

Identified Items

Anchor Examples

Nurturing trust-building processes

“[...] But [regarding] the counseling, people often ask, ‘What do you say about that? What should I do? Should I really choose a hearth catheter, or should I drop it? What do you say about that?’” [Interviewer: ‘Hm.’] “And when I say, ‘Yes, go!’ or when I say, ‘No, don’t go!’—” [Interviewer: Hm] “That’s absolute. That’s what I experience again and again. They confide very much in our opinion. And when we endorse something, then it’s okay, and if we do not, then it’s not.” (Primary physician, female, 47 years old, GP03)

“[...] As noted, one has no chance with physicians with such a disease. […] There are rare diseases, that’s disastrous. And physicians get a chance, somehow, to search for anomalies, to get clues about which diseases can be considered. In my case, it was rather stupid, as liver values were so much in the foreground; however, one only needed to regard the thrombocyte values. I don’t know how this can be done in an intelligent way, as based on this or that, it can be that. But private physicians in particular have a hard time identifying a proper diagnosis. And many people do not have the energy to transfer from one doctor to the next, as I do. Yes, that’s what one does.” (Patient, male, P34)

Dependencies

“[...] In the new city I live in, I have gone to hematologists, with whom I have not gotten along with at all, and the personal contact within the network has encouraged me to simply say, ‘No, I have a chronic disease and I am relying on that physician; if I do not get along with him, I need to change the physician.’” (Patient, female, P30)

The psychosomatic corner

“[…] And many physicians are still of the opinion that if there are no identifiable causes, then it is psychological. Then there are many dystonia patients who need to fight [the opinion] that this is simply not psychological, but neurological.” (Patient, female, P39)

Other participants involved

“I am lucky to have physicians who play along with this ‘referral marathon.’” (Patient, female, P13)