Table 2.

Providers perceptions of patients' and parents' informational needs

Understanding NS and the treatment journey
Understanding the diagnosis‘They have to learn about the disease, and that it's relapsing and remitting; and that's complex to understand.’‘… Some patients need to have some distinction between…a kidney disease per se and voiding. They have that confusion because when they come to see you they say ‘I don't know why I'm here for, I'm peeing well.’
Understanding the prognosis‘Two other things I think they need to hear, one is the course of the disease in question. If we're talking about FSGS, how likely is it to progress and what are the consequences…if steroids don't work? In terms of dialysis and transplant, what might the timing be? What do those look like? Again, all in this 20-minute time span … Then what are the expected response rates and relapse rates for their particular type of FSGS or minimal change disease?’‘…they want us to give them a prognosis, but unfortunately, we can only prognosticate depending on how often we see them, and how often the disease relapses. At their first presentation, they want me to tell them if it's ever going to come back, and I can't. I can only just say in a 100 children, it will come back in 70% who will go on and have one relapse. But out of those maybe 5 or 10% will progress to end-stage renal disease. They want to know where they fit already, and I can't give them a prognostic view at that very first visit. I think that's the hardest part.’
Knowing what diagnostic tests will be done‘I find that lots of times, patients come in with urine analysis 3 plus. The first step for me is explaining to the patient they need to confirm this, the second step involves a kidney biopsy because we need to have a firm diagnosis, a definitive diagnosis.’‘They also have to learn how to dip their urine every morning, so we teach them to dip the urine. They have to be trained in how to do that, and to understand what a relapse means, what protein in the urine means; and then agree to be able to do that each day.’
Understanding the approach to treatment‘They want to know how long they need to be treated with a drug that may or may not be toxic.’‘I think that they clearly should have a sense of the major side effects of each of the options. Now of course all these drugs have innumerable side effects so you can only go so far in terms of informed consent and how much weight do you give to each possibility is going to be a matter of your style…but they need the major side effects and the beneficial effects in terms of what type of time frames things are likely to improve if they're going to improve…’‘Medication-wise, there are a lot of issues about starting multiple medications. From the patient's perspective, it's immediate symptom control, but then from the physician's perspective, it's more symptoms plus decisions about conservative therapy versus using immunotherapy.’
Understanding the complexities of the disease‘I think it's difficult for the parents to understand that this is a relapsing and remitting disease, and that in fact, studies have shown; the more that we treat it at the beginning the better, so this is really our best chance to treat the underlying disease; and let's treat it the best way. That they find hard because once it goes away, they want to stop the medication, so you have to convince them that in fact studies have shown 12 to 16 weeks have been really good in diminishing relapses down the road…’
Tailored information‘So they often feel, I think —sometimes, I feel as well—that there wasn't really a good communication with what's actually going to happen to them because we're not exactly sure at that point;…they've just come with protein in the urine. That covers a very large and very wide spectrum of the disease process. I think the idea about trying to account for what it is that we tell the patient and what they receive is sometimes not a very good match.’I'd say first thing it has to be tailored to the level of understanding of the family…here's your relapse risk…, but I can tell you an awful lot of my patients, whether they're English or, as in the majority, Spanish speaking, would not understand that. They would not understand what a percentage is, so it has to be fairly nuanced in terms of covering things, but not being confusing. That's the problem I have with online material. You can go to something that's absolutely correct and they come in and think my baby's going to die tomorrow and you look at it and you say, ‘That's right. It just doesn't apply to your baby.’ It can be true information but not relevant here, and they don't know that.