How do you help educate the patient on their condition?
Because most of our patients come from far away, we realize that they’re going back to a doctor or a set of doctors who may not have a lot of familiarity with their condition. We make them as comfortable as we can by first educating the family. We tell them, “You can’t feel angry. It doesn’t do any good to feel angry that you know more about your problem than your local doctor does. They’ve never seen it before and you’re living with it, so you need to learn as much as you can and accept the fact that your doctor has never seen it before. That being said, we’ll send all the information we can to your doctors about what the options are or what we’ve done for you and know that you and they can reach us any time through the web, or by telephone. If there are uncertainties, take photographs, email them to us, and we’ll help you manage things at a distance.” So we do a lot of that with for an individual patient’s situation.
Steven Fishman, MD
ES: Helping families and patients take responsibility for their health care and really understand their diagnosis is very gratifying. Our patients often find themselves teaching their local doctors and hospitals about their diagnosis and how to best care for them which is quite unique. Over time, it is interesting to see how patient’s knowledge evolves by the questions they ask, the terminology they use, etc.
MBS: I think we always acknowledge too that they’re going to be the expert. We often say that they will know more about this over time than we do because they are going to deal with it every day. I think that’s nice for them to hear that they’re going to eventually have a handle on it and be able to make things work better for themselves or their child.
Erin Spera, MS, CPNP and Mary Beth Sylvia, MS, FNP-BC
What kind of education is provided during the course of the clinic visit from the NP perspective?
ES: From the NP perspective, we talk a little bit about a diagnosis if we can clearly see that the referring diagnosis is correct or that we have an idea of what it is. I think for the most part we try to introduce them to some of the terminology that they might hear and some of the treatment options that they may hear about. We may help remind them of questions that they have or try to answer questions about treatment and timing and prognosis down the road as best we can.
MBS: I find there’s a lot of conversation up front about families asking me what I think the diagnosis might be and how the particular lesion might be treated. I often offer my opinion about the possible diagnosis or differential diagnoses while advising the patient and family that the physicians will evaluate and offer their opinions, too. After the physicians have done their evaluation, I may go back in with the family to discuss things further. We also have an interventional radiology nurse practitioner who is part of our clinic and will discuss interventional radiology procedures, such as sclerotherapy or endovenous laser treatment or embolization.
ES: Before I leave the room I also brief them on how the rest of the visit will go, who will likely come in next and why. If I think they may require an in-clinic ultrasound or any other type of testing prior to leaving I mention that too.
Erin Spera, MS, CPNP and Mary Beth Sylvia, MS, FNP-BC
How do you reassure patients?
I think we all try and find our ways to reassure kids. I like to be truthful, I don’t think I’m doing a patient a service by giving them false information about the future. I think it’s important to set realistic expectations. I find that patients are often reassured by hearing about or even meeting other patients with similar problems. We have lots of patients who can be positive role models for other kids and we try to facilitate that. I also recognize that the exact same lesion in two different kids can have two different completely effects… Within appropriate boundaries, I try to reassure patients of their normalcy and their beauty. I often make things very personal and relate them to my own children or myself. I will often tell them about how I started losing my hair in high school and I just decided that I wasn’t going to worry about what anybody thought and that there’s nothing wrong with being bald, and then I was offered medication to make my hair grow and I turned it down. It’s hard to know how much that helps, but I think every person that relates to them positively, particularly if there can be a positive role model experience, I think is worthwhile. But again, the parents have to take that home with them.
Steven Fishman, MD
How can families look for more information on their own?
Should patients research their conditions online?
We try to caution people in searching for online information on their diagnoses. Sometimes depending on how many hits sites get, personal blogs can pop up that are not affiliated with a medical center and some of that information can be sensationalized or emotionally written, Often photographs that are posted are of extreme cases and sometimes that can really be very anxiety provoking for families… We try to encourage patients to read our website or at the very least the information provided by a reputable vascular anomalies center affiliated with a major medical institution.
Erin Spera, MS, CPNP
How do you feel about families searching for information on the Internet?
I think it’s a bad idea to search the internet for information on vascular anomalies. There’s so little information about vascular anomalies, so some of what’s out there is incorrect. What I usually tell families is, “I’m going to ask you not to search the internet and I know you’re going to do it,” because I think the temptation to do it is really unmanageable for most. When the computer’s staring at you in the middle of the night when you’re thinking about it, I think it’s hard to resist that temptation. I then tell patients and families that the internet is like the news; what sells is the stuff that’s dramatic. What’s out there is the worst case, the scariest, the people that are unhappy and most of our patients don’t fit into that category. I’ve also said to patients and families, “When you’re looking at something very scary, please remember me saying, ‘That’s dramatic and that’s the worst case scenario. That’s not where we fall.’” I think that’s the best guidance I can give for internet research if that’s what a person is going to do. I’ll also add, “please write down the questions of the things you see, contact me, contact the nurse practitioners, do something instead of sitting, wondering, worrying, being scared about something that you’re seeing online.”
Brooke Corder, MSW, LCSW
Any advice for how families can educate themselves?
We try to steer them towards resources that we know about. Many of these different types of vascular malformations have their own foundations and groups, and they’re usually pretty good. They’re often run by parents that have a family member or child with the condition, and so we steer them to those. I think our center has some handouts for the different conditions. I try to tell them not to just Google it, because without some medical knowledge you’re going to find the shock and horror stories kind of thing and particularly if you start looking up the images (especially for the newly diagnosed patient), that can be really frightening.
Whenever we do consults, they do get a letter back that’s in relatively simple terms. It uses some medical terminology, it kind of lays out what the future plan is. For example, say it’s a capillary malformation. The letter might say “You have got this pinkish lacy stain on your skin, it may cause leg length difference, it’s unlikely to cause any functional problems for you, you shouldn’t expect that this child is ever going to have pain in their joints or trouble walking. They might need a minor leg length equalization procedure, that’s about it.” Or, “you have Klippel-Trenaunay, and these are the different things that can happen with it.” So I think our center tries to lay out for them with their syndrome what the different things that go along with it that have to be watched for.
Samantha Spencer, MD