Building rapport: A guide to effective communication with your SMA care team
Developing a trusted relationship with healthcare providers and knowing how to communicate with them is an essential part of managing life with spinal muscular atrophy (SMA).
SMA care requires a multifaceted approach, and whether you are a patient or caregiver, it can be difficult to keep all the balls in the air. From preparing for appointments to maintaining open communication with your provider, a variety of strategies and best practices can help make your doctor visits or clinic days as efficient and beneficial as possible.
In this way, you can ensure all of your questions are answered, your management plan is tailored to you, and you are able to be an active participant in your care or that of your loved one.
Getting organized and preparing ahead of time for medical appointments can help set you up for success, maximizing the effectiveness of the visit and ensuring your healthcare needs are addressed.
For example, you might:
- pull together medical notes from healthcare providers
- make a list of medications and supplements
- bring necessary assistive devices such as communication aids
- bring insurance information
- plan to be early to avoid the stress of a late arrival
- be ready to discuss short-term and long-term health goals
- download and fill out this doctor discussion guide to take with you to the doctor.
Tyler Dukes, who has SMA type 3, suggests listing your questions ahead of the appointment, so you don’t get caught up in the moment and forget to ask. He also recommends having a family member or friend accompany you to medical appointments.
“I’ll ask them to come in with me and help take notes. That way I can sit and focus and absorb what the doctor or the team is talking about and be in the moment and not have to worry about trying to remember every single little detail,” says Dukes, who lives in Dallas and works as an engineering manager for a global tech company.
He also asks his doctors if he can record their session on his cellphone.
Another one of his tips is to digitize healthcare records or doctor’s notes, so he can send these by email to a doctor prior to an appointment. He also carries his records on a thumb drive. Dukes also suggests sending questions to the doctor ahead of time, giving them time to prepare a response before the appointment.
Caregiver Kristen Resendez agrees that preparation is key to a successful clinic day. Her 8-year-old son Jack was born with SMA type 1, and with treatment, is now categorized as SMA type 2. He’s also on the autism spectrum.
“He’s pretty motivated by surprises and toys, so I always have something new for him to be able to sit through an appointment and go through all the pulmonary testing or X-rays,” says Resendez, who lives in Harlingen, Texas.
To help her son understand what is happening, she carries a small whiteboard to make a visual checklist that uses pictures, symbols, or words to represent appointment activities in a step-by-step manner.
Amber Joi Watkins, also a caregiver, isn’t above light bribery when it comes to taking her 5-year-old daughter Celine, who has SMA type 1, to clinic visits. She packs snacks and entertainment, and talks to Celine about cooperating with her doctors and other therapists.
“I’m not a big candy person, but I will definitely bring candy to a clinic to get her to cooperate so we can make the most out of our time we have with the doctors,” says Watkins, of Miami Beach, Florida.
Stress management can start by communicating your feelings to your healthcare provider, who can provide information, address your worries, and help make the appointment as comfortable as possible.
Edward Smith, MD, a clinical neurologist who ran the Duke University children’s neuromuscular program in Durham, North Carolina, says clinic days allow SMA patients and caregivers to see a number of specialists located under one roof.
“If you’re going into clinic once or twice a year, it can be stressful trying to remember everything when you’re seeing a neurologist, a pulmonologist, a respirologist, and half your day is spent in physical or occupational therapy,” he says, adding many clinics have a care coordinator who can help ease stress and anxiety around appointments.
A care coordinator not only lines up appointments, but acts as your advocate, communicates information to all your specialists, provides education and resources about SMA, and works with the healthcare team to implement your personalized SMA care plan.
“They’re invaluable for easing your clinic visit. They can connect you with financial assistance, set you up with referrals to specialists outside the clinic,” Smith says. “They also provide emotional support to patients and families, helping you cope with SMA.”
Candis Welch, who has SMA type 2, says going into a long day with multiple appointments with various providers at a specialist clinic requires mental readiness.
“I’m preparing my mental health more, because it can be a lot, especially as you get older,” says the Los Angeles resident, about her experience of seeing a round of doctors every 20 to 40 minutes at a specialist clinic.
Other mental health techniques that reduce stress and anxiety can include:
- practicing mindfulness and meditation, such as deep breathing
- listening to calming music
- using positive affirmations such as “I am capable of handling this appointment.”
Dukes says that by bringing a family member or friend to his appointments, he has someone to talk with, which helps him lower his anxiety.
Children may feel less stressed if you pack a favorite stuffed animal or toy, a book or a video game. Many pediatric clinics also play children’s movies or have a video game set up to play.
If your or your child’s anxiety is overwhelming, consider speaking to a mental health professional who can provide coping strategies and support.
While the goals of what can be accomplished at a clinic appointment or specialist visit vary from person to person, depending on SMA type, stage of progression, or symptoms, there are a number of common objectives.
These can include:
- an assessment of your or your child’s current health status
- a review of the SMA treatments and adjustments to medications
- an evaluation of disease progression
- recommendations for physical therapy, occupational therapy, speech therapy, or scoliosis treatment
- guidance on nutrition or exercise
- an assessment of adaptive devices such as a wheelchair
- psychological support to help deal with the mental health challenges that come from living with a chronic condition.
Goal setting should also be a priority.
Watkins says she and her daughter Celine fly to Philadelphia every six months to see specialists at the children’s hospital.
“I typically set goals,” Watkins says, adding she wants to make sure she uses all the available resources while at the hospital.
Resendez says her trip takes around nine hours to get to the clinic in Dallas. Like Watkins, she also has a list of things she wants to accomplish during clinic visits, depending on what her son Jack needs.
“I do like to put pressure on the staff or doctors, [due to] the fact that we live far away,” Resendez says, adding it helps to keep a level head when speaking on behalf of her son. Sometimes, this means meeting her son’s doctors halfway.
“I’ve always been an advocate of saying, ‘You may not think this is right, but let’s try it,’” Resendez says. “And if it works, then that’s great.”
Learning to advocate for yourself can be a challenge after making the transition from pediatric care to adult care.
Welch says one of her biggest concerns when she meets a new doctor is being recognized as an adult who knows her own body.
“I expect to have my questions answered. I expect to have some follow-up if I’m experiencing something new,” she says, adding she had to learn to push hard to obtain answers.
Dukes agrees with that tactic, noting he didn’t attend specialist clinics for a decade because he didn’t feel respected as an adult.
“It was just recently that I found a good neurologist and it’s like, ‘We’re going to work collaboratively on this and we’re going to work together and move the needle forward however we can,’ ” he says.
Tracking new symptoms or the progression of symptoms is a valuable practice for people with SMA or parents of children with SMA.
Tracking can be done by:
- writing in a journal, including symptoms, medications, and doses
- noting any side effects or changes in response to medications
- taking photos or videos to visually document changes in your or your child’s physical appearance, movements, or specific symptoms
- tracking any changes in breathing patterns, coughing frequency, or respiratory effort.
Watkins records her daughter’s symptoms using both an iPad and a Baby Connect app.
“The app was very helpful, particularly when seeing the pulmonologist because they have so many specific questions about symptoms the child is experiencing when they’re sick. I found that to be very helpful to answer, ‘Is it a dry cough, wet cough?’ — things I would not remember had I not written it down,” she says.
Before going to a medical appointment, discuss its purpose with your child, and encourage them to talk about how they are feeling physically and emotionally.
This will set them up for the actual appointment, when you can reinforce the idea of sharing information about symptoms or concerns with their doctor.
You may have to translate medical information into language appropriate for your child’s age and understanding. It also helps to model effective communication by expressing your own questions and concerns during the appointment.
As her daughter is still quite young, Watkins says it’s up to her to be the primary communicator. If she forgets to ask a question during an appointment or if something comes up between appointments, she uses a clinic communication app to contact Celine’s pediatrician or other healthcare providers.
“She’s a great communicator, but not as much with doctors yet,” says Watkins about her daughter.
After the appointment, as you follow through with recommendations or changes in your child’s treatment plan, talk about the positive aspects of the appointment and acknowledge your child’s efforts in communicating with the doctor.
Talking about sensitive topics with your doctor can sometimes be challenging, but there are ways to build a trusting relationship.
Some tips include:
- starting a conversation about less sensitive topics to establish a comfortable dialogue
- being honest about emotions
- practicing sensitive topics ahead of time, by talking with a family member or friend.
You can also request a private setting if that makes you feel more comfortable. Because healthcare providers are bound by confidentiality, they cannot disclose your information without your consent.
Finding a doctor who is on the same wavelength can be a challenge, Welch says. She recently changed health insurance providers along with members of her personal healthcare team as she sought better communication.
“I need them to be, ‘If she’s willing to go the mile, we’re going to go that mile with her,’” she says. Her goal is to find a doctor who provides the superior care she seeks to slow her SMA progression as much as possible.
She’s learned to be a strong advocate for herself, especially when it comes to sensitive discussions.
“I have to understand their language. I have to be compromising. I have to know what their process is. What do they need? It’s a relationship; it’s not a one-way street. So, what can they do to help you and what can you do to help them help you?” she says. “Mastering that advocacy within yourself and knowing that if you don’t talk about it, they won’t.”
Dukes likes to ask the question “why?” For example, he asks why a particular treatment is or is not used, to understand the doctor’s viewpoint.
“If the goal is to do X, but we’re doing Y to get there, we’re not gonna get there, right?” he says. “That’s where it starts being collaborative.”
He also sought a doctor with whom he felt a connection. As he values relationships, he didn’t click with a previous doctor who was more analytical. He feels he can discuss sensitive topics with his new physician.
“Our minds operate on that same frequency. It makes our communication just that much more natural,” he says.
Building a relationship with a doctor goes beyond describing your symptoms and getting medication prescriptions. It requires a doctor who listens and invests in the time spent with you or your child.
Some recommendations include:
- Sticking with your treatment plan between appointments. If you encounter challenges, communicate these to your provider rather than altering the plan without discussion. Timely communication can allow for adjustments to your treatment plan.
- Scheduling longer appointments to allow time to discuss your concerns about the health of your child or yourself.
Watkins says she’s willing to travel to work with a healthcare team she trusts.
As her daughter Celine is seen by a team of pediatric specialists in a series of back-to-back appointments, she has learned to ask the next person in line for another opinion. For example, she might ask Celine’s pulmonologist to clarify something said by the neurologist.
“I might say to the pulmonologist, ‘What are your thoughts?’ Are you aligned with this?’”’ she says. “Typically they are, but sometimes they’re not. Sometimes I’ll get different opinions from the neurologist and the pulmonologist and the pediatrician.”
Resendez asks for virtual visits with Jack’s doctors in between clinic visits to keep communication flowing both ways.
“I have such a close relationship that I have our neurologist’s cellphone number. I have our pulmonologist’s email,” she says. Having and using these when necessary helps her to build her sense of trust in the healthcare team.
If you find there are communication challenges, you can take steps to improve your relationship, including:
- Share your concerns openly and honestly with your doctor. Let them know if you feel there are communication issues or if you don’t fully understand aspects of your care.
- If there’s something you don’t understand, ask for clarification.
- If you feel rushed during appointments, ask for more time or consider scheduling a follow-up appointment to continue the discussion.
- Consider a consultation with another specialist, as this can complement the care provided by your primary doctor.
When Welch doesn’t align with a new doctor at first, she starts asking questions about what their vision is for her healthcare. Because she doesn’t always understand all the science behind SMA treatment, she can’t predict how her body will react to the disease and its treatment as she gets older.
“I’m still learning this day by day. My body is doing things that 20 years ago it did not do. So we’re learning this together,” she says, adding her philosophy is to try a new doctor for three months to see if their visions align.
Dukes says the COVID-19 pandemic made it easier to connect with his healthcare providers, allowing him to do online appointments. His healthcare providers also can reach out to him by phone, email, or text message.
“I’ve developed that rapport of, if they need something, I get it to them right there,” says Dukes, adding quicker and more thorough communication helps build trust.
Smith notes that, because SMA is a rare disease, some people with the condition may have to work with a primary care physician rather than a specialist.
“A good primary care doctor should be willing to listen, discuss concerns, and if they don’t have an answer, they’ll try to find it,” he says. “That’s quite a good situation.”
He agrees that telemedicine has connected specialists with people who don’t live near an SMA clinic, or for those who require a lot of assistive equipment that makes it difficult to travel.
“If you live at a distance from a clinic, a Zoom call allows you to talk with a specialist, discuss a care plan, talk about your symptoms,” he says.
Ultimately, if you can’t seem to find common ground with your doctor even after trying these strategies, you might consider leaving and connecting with a new healthcare provider.
Working with your doctor on a course of treatment that’s best for you or your child means clearly communicating your goals, asking questions about treatments and potential side effects, and seeking second opinions from other healthcare providers to gain additional perspective.
Having three FDA-approved disease-modifying therapies for SMA has been transformative, according to Smith.
“The most dramatic results are being seen in babies that were destined to be SMA type 1 patients,” he says. “Combining newborn screening for early diagnosis and early treatment, many of those children are having amazing results.”
Adults with SMA also have options, allowing them to explore the type of treatment that fits their lifestyle.
“The conversations I was having with patients weren’t focused on side effects from the medications, most of the time. Instead, they wanted to see what worked best for them, what allowed them to move better, reduce chronic pain,” he says, adding part of his job was to manage expectations, as response to treatment may vary from person to person.
Watkins agrees that education about treatment options is key, which she does by keeping up with SMA clinical research and talking to other parents. She has discussed combination therapy with Celine’s doctor.
This involves using a combination of treatments such as SMN-enhancing therapy with Spinraza (nusinersen) or gene therapy with Zolgensma (onasemnogene abeparvovec), along with an oral medication such as Evrysdi (risdiplam), to modulate the SMN2 gene to increase SMN protein levels. The combination aims to better manage SMA symptoms and slow disease progression.
“Her neurologist has taken a more conservative approach with combination therapy, wanting to see actual research. So we’ve taken our time with it. I put a lot of trust in them,” Watkins says.
Resendez says her son was taking part in a clinical trial that offered combination therapy. After a discussion with Jack’s doctor, she chose to accept the treatment.
“Our neurologist and I discussed that and decided that it was either going to help him or it wasn’t, but it wasn’t going to do anything negative to him,” Resendez says, adding she keeps an open mind about new treatments because she’s seen improvements in Jack’s symptoms.
“You don’t know what superhero power he’s going to gain from a new medication and they’re all little things, but as I’m sure a lot of you know, every little thing is so important. So if I can give him that gift, then I want to,” she says.
Being an active participant in your treatment plan ensures your healthcare aligns with your preferences.
To be more active, you might:
- talk with your doctor about the risks and benefits of each treatment option
- take into account how the proposed treatment plan may affect your daily life, along with people such as your caregivers and family
- discuss the long-term implications, including how treatment may change over time.
Now in her late 30s, Welch takes an active role in decisions about her healthcare, ensuring her treatment plan matches her evolving needs and priorities.
“At my age and my stage of condition, treatment for me looks like starting a new drug plan or trying a different method of physical therapy or trying to reduce any type of chronic pain I might be having,” she says.
She monitors her physical condition and questions her healthcare providers about changes. She asks her doctors to be honest about expectations, but not undervalue things she could be capable of doing.
“I’m always trying to look to the future because I want to do my very best at maintaining a healthy, independent life as I can. I’m very proactive,” she says.
Smith says most of his patients allowed their healthcare providers to drive the SMA care bus. To counter this, he would ask questions designed to encourage participation.
“Take the transition from pediatric to adult care. When my patients got to be 15 or 16 years old, I would discuss options about treatment. They’d look at me, thinking their parents would be in charge, but I wanted them to start thinking for themselves,” he says. “So they had to answer yes or no, to make their own decisions.”
For a person or parent facing an SMA diagnosis, it can help to connect with the SMA community for support.
“They give you the information, they give you the hacks, they give you the resources. The community is what keeps you going,” Welch says.
She also suggests parents should do their best to give their kids a normal childhood.
“Let them be kids, because they only get to be kids once, and they have enough medical stuff to keep them going for the rest of their life,” she says, adding she went to summer camp and Disneyland as a child.
There’s also a growing community of people who have grown up with SMA who are ready to talk about their experiences, Dukes says.
“Find a group of adults or an adult that you can reach out to, because we’ve been down this road. We understand it from your child’s perspective. We’ve lived it,” he says.
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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