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Taking Charge of Your Health Care

When you were growing up, your parents were in charge of managing your health care. Now that you’re a young adult, you’re old enough to take charge—or at least old enough to become increasingly more involved—in making decisions about your health, specifically your bleeding disorder. As you take over this responsibility, you’ll need to transition from pediatric to adult health care and to effectively communicate your health needs to your new health care providers.

This section of Step Up covers:

Transitioning to Adult Health Care

Until now, you’ve probably visited doctors, nurses, and other health care professionals trained specifically in pediatric medicine. Now that you are getting older, it may be time for you to be under the care of specialists in adult medicine. Individuals between the ages of 16 and 25 years typically switch to health care providers who can address the needs of adult patients. This transition can be difficult. You’ll most likely be leaving behind a whole team of health care professionals with whom you’ve spent years developing relationships. Now you’ll start building relationships all over again with a new group of health care professionals. You may wonder, why bother?

As a young adult, your body is growing and changing, and different aspects of your health will need to be monitored as an adult. Adult health care providers are trained to address issues specific to young and older adults. You also may have questions, for example, about dating and sex, that an adult care provider may be better able to answer than a pediatrician.

Your transition to adult health care will involve changing to a Hemophilia Treatment Center (HTC) team and a primary care provider who see adult patients. Just as your new HTC team can answer questions you may have about your bleeding disorder specific to the adult stage of your life, an adult primary care provider can do the same on more general health care matters.

Talking With Your New Health Care Team

Until now you may never have discussed your health with a health care professional. Your parents may have always done the talking for you. Now that you’re an adult, however, you’ll have to start speaking for yourself. Indeed, speaking about your health with members of your Hemophilia Treatment Center (HTC) team or your primary care doctor can be hard if you haven’t done it before. You may be afraid to ask questions or be concerned that you will come across as a complainer. Just remember that you’re now the leader of your health care team of doctors, nurses, and other health care professionals who have been assembled to best serve you as an adult with a bleeding disorder. Don’t be afraid to ask questions or share any information you think is important.

This is your chance to speak up, take charge, and become partners with your health care team.

What to Do Before, During, and After Your First Adult Health Care Visit

Taking charge of your health care involves making the best use of your time during health care visits. Listed below are suggestions of what you can do before, during, and after your first visit to make certain it is as smooth as possible.

Before Your First Adult Health Care Visit

Communicating well with your adult health care team may require some preparation on your part so that you can get all the information you need during your visit. Take some time before your first appointment to think about what a health care professional should know about your bleeding disorder. Important topics you should discuss include:

  • Your symptoms
  • Your infusion log
  • All prescription and nonprescription medicines you take, including pain medications and medications not related to your bleeding disorder, vitamins, dietary supplements, herbal remedies, etc.
  • Medications and food to which you are allergic

Here are some steps you can take to prepare for your visit:

  • Write down details about your symptoms
    • When did they start?
    • What makes them better?
    • What makes them worse?
  • Keep a health diary to bring to your first visit
    • For a month or two prior to your first visit, keep track of:
      • When you felt well
      • When and why you didn’t feel well
      • Your energy level. When was it high? When was it low?
      • The activities, including school or work, that you participated in and those you missed because of symptoms related to your bleeding disorder
  • Make a list of family members who:
    • Have bleeding symptoms similar to yours
      • How are they related to you?
    • Have been diagnosed with a bleeding disorder (such as hemophilia or von Willebrand disease [VWD])
      • How are they related to you?
  • Bring your medical records, including x-ray films, laboratory test results, and previous doctors’ records
    • If you don’t have your own copies, ask your pediatrician and any other health care providers to send them to your new health care provider’s office prior to your first visit
  • Bring a list of all the medicines you take, including those you take regularly or only from time to time. Include all prescription and nonprescription drugs. Don’t forget any herbal preparations and vitamins, too

By having these important details about your bleeding disorder available during your visit, you will be better able to describe your condition to your health care provider.

Once you’ve shared important health information with your provider, your next job is to actively listen to what he/she says.

Here are some tips to help you listen and remember what your health care provider says during the visit:

  • Take a notepad and/or audio recorder. Taking notes or recording what he or she says (with your health care provider’s permission) can help you remember important information about your bleeding disorder and your treatment plan.
  • Bring along a trusted family member or friend, if possible. This person can help you remember what was said during the visit and may ask questions you didn’t think to ask

During Your First Adult Health Care Visit

  • Tell your doctor and other members of your Hemophilia Treatment Center (HTC) team anything you think may be important. Don’t wait to be asked.
  • Don’t be embarrassed to share personal information. Health care professionals are used to hearing deeply personal information.
  • Ask questions. If you don’t ask questions, your health care providers may assume you understand everything they say, even if you don’t.
  • Take notes or ask if you can record your health care provider’s instructions.
  • Ask your health care provider to actually draw or show you a picture. When talking about parts of the body, the way the body works, or the way the body reacts to an activity or drug, having a picture in front of you makes it easier to follow.
  • If you don't understand something, and think it will help, ask for written instructions for any treatment prescribed. HTCs often have patient education materials, such as brochures and DVDs, to help explain treatment.
  • Tell your health care provider if you think something may interfere with your ability to fill or take a prescribed treatment. For example:
    • Does your treatment cost more than you can afford?
    • Do you have difficulty swallowing pills?
    • Do injections frighten you?
  • If you have any specific concerns about the diagnosis or treatment of your bleeding disorder, ask your health care provider where you can get more information.
  • Ask your HTC team who you can contact with any questions you forget to ask during your visit, or if you have more questions after.

After Your First Adult Health Care Visit

When your first visit with your new adult health care provider is over, your job as the primary manager of your health is not. You will still have steps to take after the visit to ensure that you remember and understand all of your health care provider’s instructions. After the visit, read over the notes you took during the visit. If you recorded your talk with your health care provider, listen to the conversation. Review your treatment plan and any other written materials you were given.

Call your health care provider if:

  • You don’t understand something discussed during your visit
  • You think of questions you forgot to ask during your visit
  • Your doctor has not gotten back to you with test results

If your doctor instructed you to have tests performed, be sure to make appointments with the appropriate medical laboratories or facilities. (Sometimes an assistant in the doctor’s office will make these appointments for you.) If your doctor recommends you see a specialist, be sure to make an appointment with that specialist.

Patient Rights

No doubt about it: transitioning to adult health care means many new responsibilities for you. However, as an adult, you’ll have the benefit of gaining full patient rights concerning your health care. Some of these rights are guaranteed by federal law, such as the right to get a copy of your medical records. Many states have additional laws protecting patients, as do many health care facilities. Many health care facilities and hospitals have patient advocates who can help explain these rights to you.

As an adult seeking health care, it’s especially important for you to know your rights because you’ll be making many health care decisions on your own. Confidentiality laws will not allow your parents or guardians to get any information about you from your health care provider.

Making Your Own Health Care Choices

Now that you’ll be taking charge of your health care, all the decisions that your parents used to make for you are now decisions you’ll have to make for yourself, including where you will self-infuse and where you will get your factor. You’ll also be signing contracts and papers related to your health care. Although you’ll now be in charge of your health care, you don’t have to lose your support network. If possible, call on those who have helped you in the past. If they’re no longer able to help, be sure to develop a new support team. Your Hemophilia Treatment Center (HTC) or local bleeding disorders organization can help.

If you haven’t been self-infusing, your HTC team can help you decide if this is a good option for you to consider. They’ll train you to identify bleeding episodes quickly and show you what to do if a bleed starts. Understanding these processes is critically important, especially if you’re planning on moving far from your current home.

  • Keeping an infusion log—a record of when you treat and information about the bleed that you treated—is a good idea not only because it lets you take an active role in your health care, but also because it can help you determine how much factor to order and how often. Many HTCs will review the patient’s infusion log before prescribing more factor. Some insurance companies now require patients to maintain these logs for reimbursement of factor.
  • Your doctor or HTC team can explain the different options for supply vendors.

Protecting Your Health Care Choices With a Living Will

Another step you may consider taking as you transition into adult health care is to write a living will. A living will is a legal document falling under the category of advance directives, which describes in writing what you, the signee, want to happen if you become unable to make decisions for yourself. (NOTE: You must be at least 18 years old to prepare a living will.) Now that you are taking responsibility for your own health care, you may want to use a living will to designate a person (called a proxy) to make medical decisions for you if you are unable to or chose not to. Talking to your loved ones and health care providers now about what you want in the future will minimize the confusion and stress that can arise if you become unable to make important health decisions due to unexpected health issues.

Because circumstances change, it’s a good idea to review your living will directives periodically throughout your life.

Here is what a living will allows you to do:

  • Choose a proxy. This person can make health care decisions for you when you cannot (or do not want to). Make sure the person you choose for this role is aware of the course of action you want to take.
  • State treatment preferences. If you find yourself in a situation in which you are unable to communicate with health professionals and your proxy can’t be reached, this information can help doctors understand what type of care you want.
  • Name a guardian. You may want a parent or someone close to you to be your guardian in case you need one in the future. For example, if your proxy is not available during an emergency, a guardian can help make important medical decisions for you.

Bleeding Disorder Supply Vendor Checklist

When researching vendors, check if they offer the following services:

  • Have convenient service hours of operation
  • Offer courteous and efficient customer service
  • Provide pharmacist consultation
  • Provide a full inventory of factor products, including different vial sizes
  • Offer infusion and other ancillary supplies
  • Have appropriate mechanisms for medical waste disposal
  • Ship factor product in a timely manner
  • Deliver factor products to the home
  • Arrange delivery when you are traveling
  • Work well with doctors who prescribe the factor product
  • Provide a summary of product orders/treatments to the prescribing doctor
  • Provide factor product unit pricing information
  • Bill third-party payers (such as health insurance companies) in an efficient and timely manner
  • Provide guidance regarding health insurance issues (eg, coverage options, appeals, procedures, etc)
  • Have a factor product recall policy in place

For a print out, go to Supply Vendor Checklist.

Where to Get Your Bleeding Disorder Supplies

The National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC) instituted recommendations on standards of service for pharmacy providers of factor for home use to patients with bleeding disorders. Known as MASAC Recommendation #188, it includes a list of specialty pharmacies that have met or exceeded these standards.

For a copy of the standards of services for pharmacy providers, go to MASAC Recommendations #188.

Here are some variations in services from different vendors:

  • Hemophilia Treatment Centers (HTCs) – Only some distribute factor
  • Home care companies – Services vary depending on the home care company
  • Hospital pharmacies – Not all stock factor or offer home delivery
  • Local retail pharmacies – Most do not stock factor but may be able to obtain factor by special order
  • Health Maintenance Organization (HMO) pharmacies – May not routinely carry an inventory of factor
  • Mail-order pharmacies – Services provided with the factor shipment (eg, inclusion of ancillary supplies, etc) should be verified

Be sure to do your research, interview various vendors, and decide what type of vendor services will work best for you and fit your lifestyle. You should never feel pressured into using a specific vendor and should not base your choices on any special favors promised by vendors.