a nursing perspective on improving outcomes for...

View this activity online at:www.medscape.org/spotlight/hemophilianursingmgmt

A Nursing Perspective on Improving Outcomes for Patients With HemophiliaSusan Karp, RN, MSBrenda Riske, RN, MSN, MBA, MPA Kim Schafer, RN, MSNSusan L. Hunter, RN, BSN

Supported by an independent educational grant from Biogen Idec.

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A Nursing Perspective on Improving Outcomes for Patients With Hemophilia

This article is a CE-certified activity.To earn credit for this activity visit:

www.medscape.org/spotlight/hemophilianursingmgmt

CE Released: 04/23/2014; Valid for credit through 04/23/2015

Target AudienceThis activity is intended for nurses involved in the care of patients with hemophilia.

GoalThe goal of this activity is to describe nursing management strategies to optimize the care of patients with hemophilia.

Learning ObjectivesUpon completion of this activity, participants will be able to:

1. Discuss key educational issues related to the patient with newly diagnosed hemophilia

2. List factors that affect patient adherence to hemophilia therapy

3. Identify useful communication techniques to address patient adherence to hemophilia therapy

4. Identify potential barriers that might affect adherence in the transitioning young adult and the nurse’s role in overcoming nonadherence to treatment

Credits Available Nurses - 0.50 ANCC Contact Hour(s) (0 contact hours are in the area of pharmacology)

Accreditation StatementFor Nurses Medscape, LLC is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center’s Commission on Accreditation.

Awarded 0.5 contact hour(s) of continuing nursing education for RNs and APNs; none of these credits is in the area of pharmacology.


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Faculty and DisclosuresAs an organization accredited by the ACCME, Medscape, LLC, requires everyone who is in a position to control the content of an education activity to disclose all relevant financial relationships with any commercial interest. The ACCME defines “relevant financial relationships” as financial relationships in any amount, occurring within the past 12 months, including financial relationships of a spouse or life partner, that could create a conflict of interest.

Medscape, LLC, encourages Authors to identify investigational products or off-label uses of products regulated by the US Food and Drug Administration, at first mention and where appropriate in the content.

Author(s)Susan Karp, RN, MSNurse Coordinator, Hemophilia Treatment Center, University of California, San Francisco Medical CenterDisclosure: Susan Karp, RN, MS, has disclosed no relevant financial relationships.

Ms Karp does not intend to discuss off-label uses of drugs, mechanical devices, biologics, or diagnostics approved by the FDA for use in the United States.

Ms Karp does not intend to discuss investigational drugs, mechanical devices, biologics, or diagnostics not approved by the FDA for use in the United States.

Brenda Riske, RN, MSN, MBA, MPADirector of Strategic Operations, Hemophilia and Thrombosis Center, University of Colorado, Denver, Colorado

Disclosure: Brenda Riske, RN, MSN, MBA, MPA, has disclosed the following relevant financial relationships: Served as an advisor or consultant for: Bayer HealthCare Pharmaceuticals

Ms Riske does not intend to discuss off-label uses of drugs, mechanical devices, biologics, or diagnostics approved by the FDA for use in the United States.

Ms Riske does not intend to discuss investigational drugs, mechanical devices, biologics, or diagnostics not approved by the FDA for use in the United States.

Kim Schafer, RN, MSNPediatric Hemophilia Nurse Coordinator, Hemophilia Treatment Center, University of California, Davis

Disclosure: Kim Schafer, RN, MSN, has disclosed the following relevant financial relationships: Served as an advisor or consultant for: Baxter; Biogen Idec Inc.; Novo Nordisk Served as a speaker or a member of a speakers bureau for: Bayer HealthCare Pharmaceuticals

Ms Schafer does not intend to discuss off-label uses of drugs, mechanical devices, biologics, or diagnostics approved by the FDA for use in the United States.

Ms Schafer does not intend to discuss investigational drugs, mechanical devices, biologics, or diagnostics not approved by the FDA for use in the United States.


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Susan L. Hunter, RN, BSNSenior Hemophilia Nurse, Hemophilia Treatment Center, University Hospitals Case Medical Center, Cleveland, Ohio

Disclosure: Susan L. Hunter, RN, BSN, has disclosed the following relevant financial relationships: Served as an advisor or consultant for: Biogen Idec Inc.

Ms Hunter does not intend to discuss off-label uses of drugs, mechanical devices, biologics, or diagnostics approved by the FDA for use in the United States.

Ms Hunter does not intend to discuss investigational drugs, mechanical devices, biologics, or diagnostics not approved by the FDA for use in the United States.

EditorSusan Moench, PhD, PA-CScientific Director, Medscape, LLC

Disclosure: Susan Moench, PhD, PA-C, has disclosed no relevant financial relationships.

S. Frieda Pearce, PhDScientific Director, Medscape, LLC

Disclosure: S. Frieda Pearce, PhD, has disclosed no relevant financial relationships.

CE Reviewer / Nurse PlannerAmy Bernard, MS, BSN, RN-BCLead Nurse Planner, Medscape, LLC

Disclosure: Amy Bernard, MS, BSN, RN-BC, has disclosed no relevant financial relationships.

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Susan Karp, RN, MS: Hello, I am Susan Karp, Nurse Coordinator at the Hemophilia Treatment Center at the University of California San Francisco Medical Center. Welcome to this program titled “A Nursing Perspective on Improving Outcomes for Patients With Hemophilia.”

A Nursing Perspective on Improving Outcomes for Patients With Hemophilia CE Released: 04/23/2014; Valid for credit through 04/23/2015

Joining me today are Brenda Riske, director of strategic operations at the University of Colorado, Denver Hemophilia and Thrombosis Center; Kim Schafer, pediatric hemophilia nurse coordinator at the Hemophilia Treatment Center at the University of California, Davis; and Susan Hunter, senior hemophilia nurse at the Hemophilia Treatment Center at University Hospitals Case Medical Center in Cleveland, Ohio. Welcome.


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The goals of this program are to discuss key educational issues related to the newly diagnosed hemophilia patient; identify the role of comprehensive care at a hemophilia treatment center; identify useful communication techniques to address patient adherence to hemophilia therapy; list factors that affect patient adherence and the nurse’s role to overcome nonadherence; and identify potential barriers that might affect adherence in the transitioning young adult.

Before we begin our discussion, please take a moment to test your knowledge on this topic by answering a few questions. You will have another chance to answer these questions at the end of the activity to see what you learned.

Hemophilia is a chronic complex bleeding disorder that can have significant complications and requires lifelong management.[1-3]

Most often diagnosed in infancy and early childhood, hemophilia can have a significant impact on individuals from childhood through adolescence, adulthood, and into old age. Nurses who care for patients with hemophilia play important roles in the overall treatment of these patients throughout their lifespan. As a primary educator of patients and their families, nurses have an opportunity to improve patients’ understanding of the specifics of their individualized treatment plans as well as their level of adherence to therapy.

Let us start by looking at a video of a brief simulated discussion between a mother of an infant boy recently diagnosed with hemophilia and a hemophilia treatment center nurse on the mother’s first visit to a hemophilia treatment center.

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Patient vignette 1: Mother with infant newly diagnosed with hemophilia

Voice-over: Janet is meeting with a nurse at a hemophilia treatment center for the first time after the birth of her first child, Todd, 2 weeks ago.

Nurse: Welcome to the treatment center, Janet. Todd is certainly an adorable baby! Can you tell me a little about Todd’s birth and the events leading up to your referral to the center?

Janet: I am still in a state of shock. My pregnancy was completely normal -- I felt great the whole time and gained only 25 pounds. I was only in labor for 5 hours and there were no complications with Todd’s birth. As soon as I saw his face, I was in love! He’s the best thing that has ever happened to me.

Nurse: I can definitely see why! Can you tell me what caused the doctors at the hospital to suspect that Todd has a bleeding problem?

Janet: That happened on the day of Todd’s circumcision. The hospital pediatrician came to my husband and me to say that the doctors performing the procedure had a hard time controlling the bleeding. So they ran some tests and then the next thing we know they are telling us that Todd has hemophilia A -- and that it is a severe form! Then the pediatrician recommended that we come and meet with you. My husband had an emergency at his office this morning, so I had to come here without him.

I still can’t believe this! We are so worried for Todd! Is there something that my husband or I could have done to have prevented this?

Nurse: First, I want to tell you that there are excellent treatments for hemophilia and that there is no reason why Todd can’t live a happy and normal life. Second, hemophilia is inherited and not the result of something that a parent did wrong.

Do you know if there are any other members of your family who have a history of bleeding?

Janet: My husband doesn’t have any bleeding problems and doesn’t think anyone else in his family has either. I was adopted as an infant so I don’t have access to my family history. How can I find out more about how hemophilia is inherited?

Nurse: Well, we can discuss this in more detail at a later time, but I can tell you that hemophilia is what we call an “X-linked” disorder. That means that it is inherited from the mother. However, because females have 2 X chromosomes, it is typically the case that the mother herself does not have bleeding problems.

Janet: Oh, okay. I guess one of my biggest concerns right now is what type of treatment Todd will need. I looked on the Internet and saw that there are no pills to treat hemophilia and that his treatment will need to be given through one of his veins!

I have so many questions: Will treatment be started right away? Who will give the treatments to him? I’m worried that my husband and I won’t be able to give his treatment to him properly. We are also worried that Todd may be bleeding internally and we won’t know it!


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Ms Karp: Let’s start our discussion by talking about some of the key issues you feel are important to discuss with the mother at this time. Brenda?

Brenda Riske, MS, MBA, MPA: I think the first thing I would reiterate is that hemophilia treatment centers are specialty centers that provide care for people with bleeding disorders.[4,5] It is wonderful to see that this mother has sought care at a treatment center, because studies have shown that there are improved outcomes for patients who receive care at hemophilia centers.[4] That is fairly critical. With this specific vignette, I think one of the key issues is to make sure the mother has a good understanding of what hemophilia is and what it means for her family. That can include things like where she should seek treatment, and the signs and symptoms of bleeding in an infant.

Ms Karp: Kim?

Kim Schafer, RN, MSN: I also think those are key issues to address. I would add that taking a very careful history of the family and getting an understanding of where this family is at the present time is very important.

Ms Karp: Kim?

Kim Schafer, RN, MSN: I also think those are key issues to address. I would add that taking a very careful history of the family and getting an understanding of where this family is at the present time is very important.

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In this case, we have a new mother with her first baby. Not only are the parents going to be learning how to take care of a new baby, they will also have to deal with this disorder at the same time. Identifying educational needs of the parents, perhaps their educational background, as well as what support systems might be available to them would be very helpful.[6,7]

Ms Karp: Susan?

Susan Hunter, RN, BSN: I would agree with what the others have said. I think it is a challenge when parents come for their first visit. There are so many overwhelming feelings that they are going through, and so many things that will need to be discussed at ongoing visits. I think that making sure they know when to call, giving them information on where to call, and letting them know that it is okay to call at any time with any concerns is very important.

As Brenda mentioned, we have the advantage of working at the hemophilia treatment centers, so we also have a social worker who will come in and meet with the family. Maybe not physical therapy at the first visit, but there are many other people who also will be meeting with them at that time. We have to be careful not to overwhelm them too much.

Ms Karp: What factors would you consider when tailoring patient education to individual patients and caregivers? Brenda?


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Ms Riske: I think Susan and Kim have brought up some important issues. We need to find out where the family is with respect to their social background, their understanding in general, what their social support is, and many of those kinds of things. Meeting the patient and family where they are in their understanding is probably the key issue.[6,7]

Ms Schafer: I agree. I also think that we need to help our patients understand this new normal, especially if they are a new family with a new baby. They have probably had ideas of how it would be for them. Now they have to adjust to a new normal and not only deal with new baby issues, but also new fears about whether their child is going to bleed or not. Patient education really needs to be tailored to help those families specifically overcome those anxieties and fears.

Ms Karp: Susan?

Ms Hunter: I think that the video displayed quite a few issues that will be ongoing. There was an inkling of a suggestion with the mother’s questions that guilt might come into play for her. She wanted to know what she might have done to cause this. Which was nothing, of course, but she nevertheless might have some guilty feelings. She came to the hemophilia treatment center without her husband because Dad had an emergency at work, so some possible supporting issues were raised. It is an ongoing process.

Ms Karp: What do you see as the role of the hemophilia treatment center in care of patients with hemophilia overall? Brenda?

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Ms Riske: Well, I think that the hemophilia center staff is well versed in hemophilia management, has much expertise and education about hemophilia, and can pass that on. In their role as educators, it’s also important that nurses address the topic of treatment. Another thing I’d like to mention is that I think many first-time families feel very alone in this situation. If we, the hemophilia treatment center staff, can connect them with other families who have had similar experiences, it can sometimes be incredibly helpful.

Ms Karp: Kim?

Ms Schafer: I agree. I also think that the role of the hemophilia treatment center staff is one of support. It’s important to develop a good rapport with the family early on, letting them know that there is a place that they can come with their questions. Parents need to understand that there really are no dumb questions; they need to understand that when they have questions, there is a place where they can get the correct information in a safe environment where they are not going to be judged.

Ms Karp: Susan?

Ms Hunter: I really have little to add. I will just echo that again, the treatment center has a number of resources available. This mother had implied that she might have looked on the Internet for some information on hemophilia. I think it is important for patients and family members to have the comfort level of knowing they have a place to call with any question.

Ms Karp: At subsequent visits, what other topics would you discuss with the mother? Brenda?

Ms Riske: Initially, this nurse was talking briefly about genetics. The genetics discussion is pretty in depth and sometimes better left for a subsequent visit. I think it would be important to start to talk with the mother about how treatment might occur, pro-phylactic vs on-demand therapy.[1] Also, I think it would be helpful to discuss what to watch for as the baby goes through different developmental stages.

Ms Karp: Kim, can you talk a little bit more about prophylaxis vs on-demand therapy? How you would describe that to the mother?


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Ms Schafer: Prophylaxis is the scheduled administration of specific doses of clotting factor given to prevent bleeding. Another type of treatment is called “on-demand” therapy, where treatment is given only after a bleed has occurred.[1]

We have learned through research that children started on prophylactic therapy not only have less spontaneous bleeding, but also have better outcomes in terms of their joints.[8] We know that hemophilia patients can have frequent, spontaneous bleeding into their joints if they do not receive appropriate treatment. We also know that this leads to joint disabilities in the future.

Ms Karp: Okay. Susan?

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Ms Hunter: I want to go back and cover something that was brought up a little earlier. Since this baby is a newborn, we also want to prepare the mother for visits with pediatricians and other healthcare providers. The topic of immunizations and what that means for her child would need to be discussed with her. I think most hemophilia treatment centers have a service where someone will provide education to those people in the community who will play a role in this child’s life, whether it is in person or over the phone.

Ms Karp: The next brief simulated video discussion is between a young man about to go off to college and a nurse at the hemophilia treatment center near his home.


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Patient vignette 2: A young man with severe hemophilia A going off to college

Voiceover: Tom is a 19-year-old high school senior with severe hemophilia A and has experienced only a few major bleeds during his lifetime. He is now visiting with a nurse at the hemophilia treatment center near his home in preparation for starting a new chapter in the fall.

Nurse: Congratulations! I heard from your mom that you were accepted into several colleges.

Tom: Yes, I decided to go away. Tufts is a school with some good programs. It is in Medford. I liked it when I visited.

Nurse: That’s great! Your mother forwarded some forms sent by the nurse at the student health services from Tufts asking for health information. I am going to fill them out and send them back to Tufts. Before we start, how have you been feeling since we last talked?

Tom: I feel great. I am done with high school and all that stuff.

Nurse: Have you thought about how you will be able to take care of yourself, take your medication when you move to Tufts?

Tom: I do the infusions myself on a regular basis -- 3 times per week. My parents have not needed to help me with this since I was a kid. I can continue doing that.

Nurse: Yes, you have been very good at staying on top of your treatment. But do you think it will be a problem for you to continue taking factor while living in the dorm?

Tom: No, I can do that.

Nurse: Have you thought about where you will store the clotting factor?

Tom: In a safe place in my room.

Nurse: Have you thought about telling your roommate or your new friends?

Tom: I have thought about it, but I don’t want them to freak out about it. I will have to see how it goes. I don’t want to be a “strange guy” on campus. Sometimes I still feel angry that I have to deal with this...

Nurse: I think telling your roommate upfront could be a good way to go. You could let him know without going into a great amount of detail. One way of approaching the subject is to just say that due to the lack of a certain protein involved in blood clotting, factor 8, you have to take infusions of this factor 8 so you don’t bleed.

Tom: I guess so...

Nurse: I know you’ve been competing in swimming matches during high school. Will you keep up with that in college?

Tom: I think I will try to, but I can always swim recreationally; I don’t have to join an intramural team...

Nurse: What about other sports?

Tom: Not sure.

Nurse: I remember you had a major bleed in your knee a couple of years ago when you bumped it on the side of the pool. Do you remember what to do in that type of situation?

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Ms Karp: Let’s talk a little bit about this video. What issues do you think are important to address with him at this time, Brenda?

Ms Riske: The nurse mentioned that the young man might want to tell his roommate, but it is not clear that he agreed. However, a question that occurred to me is where is he going to keep his factor if he doesn’t tell his roommate? Those dorm rooms are fairly small. How is the disposal of needles and syringes going to happen?

In addition, the nurse in the video mentioned that she was filling out some paperwork to send to the student health center at the college. That is important, but the young man needs to reach out as well. He is 19, and he is now an adult by law. He needs to take the responsibility for reaching out to them, which can be done with the help of the hemophilia treatment center staff.

Ms Karp: Kim?

Ms Schafer: He did mention that he already self infuses. He had a plan to store his factor in his dorm, but he did not really have a plan for whom he was going to inform about his condition. In the event of an emergency, it would be important for him to wear a MedicAlert® bracelet. Also, if he does not feel comfortable talking to his peers, it’s important that he at least identify somebody on the floor, maybe a resident assistant, who he could let know. Then, if an emergency arises, the resident assistant would be able to contact the correct person.

Ms Karp: Susan, what issues do you think are important to address with this young man at this time?

Ms Hunter: I think that Brenda and Kim have covered the main issues, and I totally agree. Again, we think about the age and the stage of development for this person. I want to point out some really good things about this patient. He has not waited until right before going off to college to learn how to self infuse. He has already been doing that for some time, so any related issues that may have come up have probably already been met and addressed. That is a good feeling for him heading off to school.

However, I agree that there are some issues that I am not quite sure he is ready to handle. He does not want to tell his roommate, but he is going to keep his factor and other supplies in the dorm room. That will become an issue. We need to lead him a little bit into some problem solving regarding what he is likely to face when he goes off to college. He is taking on some milestones, which is really key for our patients.


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Ms Karp: Let us talk for a minute about how we prepare our adolescents and older children for this transition, these kinds of transitions. We do start well before they are 17 or 18. Brenda, do you want to talk about that?

Ms Riske: We talk a lot about transitions at hemophilia centers across the country. Often we are talking about transitions as primarily an adolescent issue.[9] In my mind, transitions start in childhood with parents getting the kids ready to transition from dependent care to beginning independent care. Some of that is starting to learn about their medications, starting to learn how to self infuse.[10] Doing a venipuncture on oneself is a pretty complex medical procedure. Then moving on to start recording what treatments they have given, maybe to start ordering factor. Those are some of the transition issues, but as Susan was mentioning, they should begin much earlier than the month before starting college.

Ms Karp: Kim, do you have something to add?

Ms Schafer: I would agree with Brenda. I would also say that transition is not only about the adolescent. It is about helping the parents learn to let go. Just thinking back to the first video of the new mom and baby, we get an idea of how the care of this child will have an impact on the lives of the parents. And then, 10 to 14 years down the road, that mother is being counseled to back off and allow the adolescent to take over. I think parents need as much support as the adolescents do when making that transition.

Ms Karp: Susan?

Ms Hunter: I think that is a great point. It is about the family, and it is not just about hemophilia. It is about the other things in their lives that challenge them. Whether it is an illness of another family member, whether it is trouble in school, maybe family members who are divorced, financial issues, all of those things have an impact. If those things are not under control, it is difficult to ask a family to focus on hemophilia-related needs.

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Ms Karp: Kim?

Ms Schafer: Great points. I would also add that, in terms of red flags in adherence, we see our patients fairly infrequently. Some patients come into the center just once a year for a comprehensive visit, sometimes every 6 months. Knowing who is doing the infusions at home and whether the patient is keeping track of his infusions using a diary is important. When nurses are seeing their patients in the clinic, it is also really important to get an idea of how many times a bleed has occurred. If a child has had 4 bleeds in the last 6 months and he is supposed to be on prophylaxis, that is a red flag to me. Then you need to consider all that information to determine whether there needs to be an adjustment to the medication or further discussion about what the activity level is, or something else. It’s very important to try to overcome barriers to adherence before they really get to be a big problem.

Ms Karp: Susan?

Ms Hunter: I agree. I think I have a recurring theme here of including in the developmental age. There are some red flags that we can anticipate. We know some of these challenges are likely to come along, especially in the teenage years.

Ms Karp: When thinking of patient populations in general, what characteristics would you consider “red flags” for nonadherence to treatment as a patient begins to transition from adolescence to adulthood? Brenda?

Ms Riske: Well, I think we are primarily talking about patients with severe hemophilia. We have those patients on prophylaxis, which Kim has described earlier. When they do not order factor regularly, that is sort of a red flag that maybe they are not following their treatment plan. When we have very little contact with them at the treatment center, one wonders if there are other things going on that we just do not know about. Those are the kinds of red flags that would concern me in looking at adherence.[11] That can be an issue no matter what age the child or adult is.


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With so many individuals with hemophilia receiving prophylaxis, we now see children who really have not experienced a bleeding episode.[10,12] There is an increased need to educate them on what a bleeding episode is, and when to call us. We sometimes get a call about a patient who has been struggling for days with a bleed that should have been treated. The family may have felt that since he was on prophylaxis, it would just work out. Along with the good news of the effectiveness of available prophylactic treatment come new challenges, especially during the teen years.

Ms Karp: Given all that, what strategies do you use to enhance adherence to appropriate treatment in pediatric and adult patients? Brenda?

Ms Riske: There are some research studies that have looked at adherence both in the general population with chronic diseases and with people affected by hemophilia.[11,13] Key findings in those studies are that increased understanding of the disease state, as well as the treatment and the impact of treatment or no treatment is associated with increased adherence to treatment. Another associated factor is support from family members and peers, as well as relationships with treatment center staff.

If we look at the 2 videos together, we see that the nurse in the first video was establishing a relationship with this mom. Then in the second video we see a relationship that has grown over time.

Ms Karp: Kim?

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Ms Schafer: I would agree. Since hemophilia is such a chronic disorder, we have many patients who have been coming to our treatment centers since they were babies. Now they are in their 20s. If you are fortunate enough to have a nurse who stays for that many years, then he or she has built a long-standing rapport with that patient. Even the new nurse who is just being introduced to a patient needs to develop and build that rapport. Using things like open-ended questions to help patients become involved, and meeting patients “where they are at,” can help build that relationship.

Ms Karp: Susan?

Ms Hunter: I think that those are good points. We can look at a situation and what we think would work, but really it needs to come from the patient and the family. What are they capable of doing? We need to be careful not to run in with all our great ideas of what will work. We first need to know where they are and what is manageable for them. The plan obviously has to work with their lifestyle, their work time, all of the things that it will affect.


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Ms. Karp: Thank you. Today we discussed educating the family of a newly diagnosed patient with hemophilia and some of the key points to consider. We also discussed a case involving the process of transitioning the adolescent patient.

I would like to thank you for joining me in this interesting discussion today.

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Disclaimer The educational activity presented above may involve simulated case-based scenarios. The patients depicted in these scenarios are fictitious and no association with any actual patient is intended or should be inferred.

The material presented here does not necessarily reflect the views of Medscape, LLC, or companies that support educational programming on medscape.org. These materials may discuss therapeutic products that have not been approved by the US Food and Drug Administration and off-label uses of approved products. A qualified healthcare professional should be consulted before using any therapeutic product discussed. Readers should verify all information and data before treating patients or employing any therapies described in this educational activity.

Medscape Education © 2014 Medscape, LLC

References 1. Srivastava A, Brewer AK, Mauser-Bunschoten EP, et al; Treatment Guidelines Working Group on Behalf of The World Federation Of Hemophilia. Guidelines for the management of hemophilia. Haemophilia. 2013;19:e1-e47. 2. National Hemophilia Foundation. www.hemophilia.org. Accessed April 14, 2014.3. American Thrombosis & Hemostasis Network. www.athn.org. Accessed April 14, 2014.4. Soucie JM, Nuss R, Evatt B, et al. Mortality among males with hemophilia: relations with source of medical care. The Hemophilia Surveillance System Project Investigators. Blood. 2000;96:437-442. 5. National Hemophilia Foundation. Comprehensive Medical Care – Hemophilia Treatment Centers. http://www.hemophilia.org/NHFWeb/ MainPgs/MainNHF.aspx?menuid=203&contentid=385. Accessed April 14, 2014.6. Cassis FR, Querol F, Forsyth A, Iorio A; HERO International Advisory Board. Psychosocial aspects of haemophilia: a systematic review of methodologies and findings. Haemophilia. 2012;18:e101-e114. 7. Forsyth AL, Gregory M, Nugent D, et al. Haemophilia Experiences, Results and Opportunities (HERO) Study: survey methodology and population demographics. Haemophilia. 2014;20:44-51. 8. Manco-Johnson MJ, Abshire TC, Shapiro AD, et al. Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia. N Engl J Med. 2007;357:535-544. 9. Simmons GM, Frick N, Wang A, Miller ME, Fragueiro D. Identifying information needs among children and teens living with haemophilia. Haemophilia. 2014;20:1-8. 10. Lindvall K, Colstrup L, Wollter IM, et al. Compliance with treatment and understanding of own disease in patients with severe and moderate haemophilia. Haemophilia. 2006;12:47-51. 11. Schrijvers LH, Uitslager N, Schuurmans MJ, Fischer K. Barriers and motivators of adherence to prophylactic treatment in haemophilia: a systematic review. Haemophilia. 2013;19:355-361. 12. Petrini P, Seuser A. Haemophilia care in adolescents -- compliance and lifestyle issues. Haemophilia. 2009;15:15-19. 13. De Moerloose P, Urbancik W, Van Den Berg HM, Richards M. A survey of adherence to haemophilia therapy in six European countries: results and recommendations. Haemophilia. 2008;14:931-938.

Abbreviationsh = hourHTC = hemophilia treatment centerIV = intravenousmo = monthMRI = magnetic resonance imagingwk = weeky = year

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