By Sandy Smith
The hemophilia treatment center (HTC) may have a physician, nurse, physical therapist and social worker all treating the person with a bleeding disorder. While each has a role to play in the care, the person or caregiver should be in the driver’s seat.
“Being prepared for your visit means coming in with the information about what has happened health-wise, particularly hemophilia-wise, and especially with bleeds,” said Guy Young, MD, during the Friday morning session, Maximizing Your HTC Experience: Interact with HTC Providers. “In order to have shared decision-making about treatment options, we need to know how your current treatment is working.”
Communicating – openly and fully – with the multidisciplinary team can help make the most of the appointment.
“An open and trusting relationship is critical to having success in the work that we do,” said Tracey Gaslin, PhD, CPNP, FNP-BC, CRNI, RN-BC. “We don’t want to manage as a hierarchy. We want to come alongside you. Your voice is what we listen to.”
Rounding out the team with a physical therapist may take a little more action since some HTCs may not have full-time provider.
“Maximizing your experience is not maximizing the HTC experience of the people in your HTC support group,” said Nikki Clark, PT, DPT, TPS. “The other thing that really differs from clinic to clinic is how long your physical therapist has with you.”
Social workers can help maximize the experience during the visit, and provide assistance in between, said Bryn Dunham, MSW, LCSW. “When I introduce myself to patients, whether it’s every year or the first time, I say that my role is to be supportive. The support looks like a lot of different things to a lot of patients and families. I encourage patients and families, if they don’t know where to reach out to, to start with me. Let’s problem-solve and figure it out together.”
While each discipline brings its own expertise – and everyone works together – it is important that the person or caregiver comes to the appointment prepared.
“In order to provide the best care going forward, we need to know how the care going backward was,” Dr. Young said. “It’s helpful for us if you have a good sense of the medical issues that have been going on in the time leading up to the appointment. One of the ways to do this is to maintain a diary.”
Share not only what has happened in the past, but also what’s on your mind, Dr. Gallus said. “When you start sharing, I can much more easily identify what’s important to you. You knowing what you want out of the appointment is hugely helpful. That takes a little pre-thought.”
It’s also important to consider who to bring to the appointment. If a toddler is cared for primarily by a grandmother, is she in the room with her questions or observations? Are other children there who are not being seen by the provider? That might be a distraction, Clark said.
“Are you focused on the child whose appointment it is, or the other kids in the room? Are you able to think and focus if you’re turning a tablet on or getting a juice box out? That’s something that a lot of people don’t realize, that they may be missing a piece.”
Ask the provider to communicate in the way that you best understand, whether that is providing written information, a video, or even drawing out what they’re discussing.
“Just use your own communication style to speak to the doctors,” Dr. Young said. “When I walk into a room, I don’t even talk about the medical part first. It’s fine to start conversationally. Everybody relaxes and the communication starts to flow.”
