Table 3.

Providers' perceptions of barriers and facilitators to the decision-making process

Barriers
Time constraints‘You know this is again going back to the time issue. I mean there's a lot to compress into a single visit and of course there's immediate information overload so I think what do they say you get two or three things out of a visit you know that a patient will remember, and we have to tell them fifteen different things.’‘…the time issues is twofold. One is not having enough time talking with the patient because you don't have enough time in your clinic visit, but the other is that sometimes we have time pressure to make therapeutic decisions that people are not ready to make because they're tough decisions.’
Complexity of NS and its treatments‘I mean virtually all these diseases have…a literature that's a text book size and if you have to give them the balance of…the risk, but in proportionate to the need for therapy…There's a lot of editing involved because if you spend all your time talking about the risks of therapy, the patient is not going to choose therapy and in the long term what's best for the patient may well be therapy.’
Patient/parent emotional response to the diagnosis‘Renal disease isn't … as common as heart disease or cancer and patients know that if you go see a Nephrologist, you're in trouble. So, the emotions are already there up front, people are anxious about it.’‘I don't think there's a pattern, they're just mad. They don't want this diagnosis. They don't believe a word you're saying. It's sort of the anger denial. They're in denial, they're not ready to have a discussion and they're very suspicious. Basically you spend the whole time answering defensive questions and stuff that's not relevant. That's not getting towards an actual treatment plan.’
Misperceptions about kidney disease and NS‘…when it comes to kidney disease in general, there's less appreciation for different types of kidney disease so often the patient will come with sort of the wives tales of…does cranberry juice help this and stuff like this. They're applying the antidotes in the common wisdom that may apply to urinary tract infections or kidney stones to this disease. Unlike for instance hypertension or heart disease, where there's been a lot of public education, for kidney disease there has not been…’‘Patients need to know about the prognosis…I'm not sure whether all patients really understand that this disease could lead to dialysis and they don't even know what dialysis means. So I think if they are educated that this could lead to organ failure if untreated…They don't connect that this is a deadly disease being on dialysis is like having metastatic breast cancer, they don't understand this and I think they need to be educated and this, I think, has a big influence on what treatment choices the patient makes and how motivated the patient is to implement those and implement lifestyle changes.’
Preconceived ideas about treatments‘I've had a number of patients say “I am not going to take steroids. You know, my uncle went crazy on steroids and I'm just not gonna take those” or “I had problems with them in the past for some other problem” and so they have some…predisposition towards or against.’‘There are those that are overly concerned about prednisone because they have read about all the complications, and there are those that would rather be on prednisone than say they are taking cyclophosphamide; because they think that's chemotherapy when they read about it on the website. So that becomes a problem.’
Literacy/health literacy of patient/parent‘Even if I try to use literacy appropriate low technical words, I find that parents who have less education, less training or younger patients, less life experience—parents who are younger—I find those patients have the most difficulty dealing with the instructions, the diagnosis, the complications, and the prognosis.’‘Even when they have a higher level of understanding or education they still tend to read just enough to get to a conclusion that they want and you have to sort of give them a broader picture and open their eyes to what all the different options are so they don't just rely on a single report from the internet.’
Facilitators
Developing and sustaining relationships/trust between patients/families and providers‘There's also the continuity of the care, and there's that sort of trust that has to be built between the patient and the physician. Those are all very dependent on how things are going, so it's a lot easier when, in fact, you're very successful, and everything goes away, and their symptoms almost go away. It's not so easy when things aren't going well or they've already been through a number of other treatments, and it hasn't worked’‘The nephrologist is scary…. I find that it takes a while in here for the person even able to accept this. We're going to be friends, and we are going to need to see each other. It's far more than just, “I'm not certain of your diagnosis because you have proteinuria.” That takes a while’‘Initially, there's not a rapport. Initially, they don't know who I am and initially, I need to make sure they…they understand that I don't keep the information from them. I don't lie to them, and I will always tell them the truth. If I tell them, “You're not to worry,” then they're not to worry. I will tell them when to worry because I will tell them I'm worried. I try to say that initially for the first two or three visits because we don't know one another, but it's still sometimes very hard.’
Inter-professional team‘It's a team. As I said, I see myself as being heavily reliant upon the compassion and the intelligence of my nurses to screen things, address what's important, and to provide that kind of day-to-day support.’‘I always get involved…pharmacies, the dietician, the nurses. I find it and the patients find it very helpful to hear an independent second opinion. Again, it's a resource, and you are actually, depending on who they are, but it's in a community setting. Sometimes, these resources are available, and it's quite useful.’‘I think the nursing approach is usually a much more practical lifestyle approach. We go in. Here's the medicine. Here's what a biopsy is. Here's the risk of a biopsy, and that could take a good hour just doing that, but if you leave it there you haven't—the patients need to and want to hear that, but boy, is that 15% of what they really need to know. They need to know what am I going to do at home. It's not like we couldn't do that, but in general, our nursing, social work, dietary that's kind of what they do and they're much better. That's the more complete education to get’
Providing patient/parent education‘We have a very directive program where the nurses actually have a specific program that they go through. They teach the families, they bring them in on a separate day; not a regular clinic day, not during your routine clinic visit. They do teaching for about two to three hours, and then they essentially begin to almost testing the families to make sure they can do it on their own. They have them read a lot of material; they have them go through all of that process.’
Social support‘One of the things that I've noticed that seems to help is when they come with family. A lot of times, that family actually has different perspectives than the patient. The patient's already overwhelmed by having that diagnosis and having to undergo very potentially toxic treatments. Having the family member around, especially if they don't speak English as a first language, is very useful, and they also have extra questions that sometimes actually help make the decision a lot easier for the patients.’