Talking to a doctor or another healthcare provider during a hemophilia treatment center (HTC) clinic visit can be difficult. It’s easy to get flustered or forget questions you want to ask. But being a good self-advocate and developing solid communication skills with providers can help them better manage your or your child’s bleeding disorder. Not all visits to the HTC are comprehensive clinic visits, so be clear why you are going for a visit and plan accordingly. Follow these tips to get the most out of appointments with your HTC healthcare team.
Before your appointment
Know why you are going for a visit to the HTC. It may be for your annual comprehensive visit, for a mid-year checkup, for evaluation of a bleed or for a follow up after a bleeding episode.
For an annual visit:
• During the year, keep a running list of questions you have for your healthcare team. Clinic visits can be hectic and you will see a lot of providers. Remember to bring the list with you!
• Track bleeding episodes using an infusion log, treatment calendar or app. This information is key for your healthcare providers so they can assess your treatment plan and make changes if necessary.
• If you or your child have specific issues write down when the problems occur, or if there is something that precipitates a problem. For example, do you or your child typically have bleeds on one particular day of the week, or following a specific activity?
• Keep track of any school or work days missed due to your bleeding disorder.
• If this is your first HTC clinic visit, make a list of your family members and note the following:
- Who has been diagnosed with a bleeding disorder (such as hemophilia or von Willebrand disease)? How are they related to your child?
- Are there family members with similar bleeding symptoms who have not received a diagnosis? What is their relationship to your child?
Bring with you to the appointment
- A health history since your last visit. Bring any pictures you have taken documenting bleeding episodes. Don’t forget your list of questions for the healthcare team!
- Infusion logs for yourself or your child.
- Names of prescription and nonprescription medications you or your child takes. Include vitamins, herbal remedies and pain medicines.
- Names of medications and foods to which you or your child is allergic
- Medical records, including X-ray films, test results or past doctor’s records. If you have been seen at another HTC bring a copy of the records from those past visits.
- A notepad to jot down information.
- If possible, bring a trusted family member or friend with you to the visit. Research indicates that we only retain about 10% of what we hear at a medical appointment. This extra person will help you remember what was said and he or she may ask questions you didn’t think to ask.
During the clinic visit
- Tell the nurse and other members of the HTC team anything you think is important. Don’t wait to be asked. The nurse will pass the information along to the appropriate team member, but don’t be surprised if you are asked the same questions over and over again during your visit!
- Don’t be embarrassed to give personal information. The healthcare team is used to hearing deeply personal information.
- Make sure you ask all of the questions on your list and ask questions about what the healthcare providers tell you during the visit, especially if you do not understand something that’s said. When you don’t ask questions, healthcare providers think you understand everything.
- Take notes or ask your healthcare team if you can record their instructions.
- Ask for written instructions related to any treatment prescribed. HTCs often have brochures and other educational materials that they can give you regarding your diagnosis and treatment.
- Tell the HTC healthcare team if something might interfere with filling or taking a prescribed treatment. (For example, is cost a problem? Is it hard to swallow pills? Are you or your child frightened by injections?)
- If you forget to ask a question during your visit, or if you have a question at any time, call the nurse at the HTC and he or she will either answer your question or can put you in touch with another member of the healthcare team who can.
If you are going to the HTC for evaluation of a bleeding episode, or for a follow up after a bleed, many of the principles discussed here still apply, just on a smaller scale.