15 Questions with Dr. Emily von Scheven– Transitioning from Pediatric to Adult CareFor a young adult with lupus, transitioning from their pediatrician's care to an adult care setting can be an especially challenging time. Dr. Emily von Scheven will address questions from young adults and their parents and provide strategies on how to best maintain a continuity of care during the transitional period.
1. When should we start our child’s transition to an adult rheumatologist?
Although the transfer of care to an adult rheumatologist is a finite event, usually occurring between age 18 and 21 years, the transition process occurs over a long period of time, and is characterized by an extensive process where the young patient gradually assumes increasing responsibility for their own care. I suggest that this process begin early, but with tasks that are developmentally appropriate for the patient. For example, at age 10 a young patient should be able to explain their condition to someone thus demonstrating knowledge about their disease, at age 12 they should be able to manage taking their medications with an aid such as a pill box (with an adult overseeing), at age 15 they should be able to prepare some written questions for their rheumatologist in advance of their doctor visit, and at age 16 or 17 they might begin managing the process of obtaining medication refills from the pharmacy.
2. What is meant by a transition team?
The transition team varies by institution, but generally includes the pediatric and adult rheumatologists, the pediatric rheumatology nurse, a social worker, and key members of the patient’s family, such as a parent.
3. What questions should I be asking the pediatric rheumatologist during this time?
It is important to know at what age the pediatric rheumatologist will transfer care to the adult provider, so that you can prepare your child for this event. There are numerous factors that may influence the timing of the transfer, such as the “policy” of the practice, insurance coverage, geographic considerations, and whether or not the patient moves away for college. You should ask the pediatric rheumatologist for guidance about choosing an adult provider and what process will be used to transfer information about your child to the adult practitioner.
4. My daughter was diagnosed with SLE at the age of 9. She was very close to her rheumatologist. She is now 19 and I have noticed that she is not as open or talkative with her adult rheumatologist. How do I get her to trust her new doctor?
You can’t do anything to forge trust on behalf of someone else. Building a relationship takes time and experience, just as it did for your family when you first started seeing your pediatric rheumatologist. It may help to say this to your daughter as she is likely noticing the differences between her pediatric and adult providers. Was she able to terminate with her pediatric rheumatologist in a way that was meaningful for her? If not, you could brainstorm with her how she might like to do this (e.g. with a card, a drawing, a small gift, etc). Honoring the transition is important and acknowledging the feelings of loss about leaving your pediatric rheumatologist can help. Help your daughter identify the things she liked about her pediatric doctor and what is important to her in the relationship with her new provider. If she is comfortable sharing what is important to her with the new doctor (e.g. that you understand my concerns, that you listen to me, that I not feel rushed, etc.), this can help as well.
5. Can my son have a dual relationship with his pediatric rheumatologist and adult one for a period of time to transition him? He will be 18 in February 2012.
This sort of dual relationship may help your son feel more comfortable with the transition. And many times there is overlap for a short period of time. Most typically this takes the form of having a final pediatric rheumatology visit several months after the first adult rheumatology visit. This would allow your son to review the experience of seeing the adult provider with the pediatric provider that he knows very well. One issue to confirm is that the insurance will cover both of these visits. However, having a dual relationship over a long time period is usually not advisable as it can be challenging for both patients and providers due to the difficulty of maintaining adequate communication and sound decision making with so many providers.
6. Who are the physicians needed? Do we need to go from a pediatric rheumatologist to an Internal Medicine, OB/GYN and Adult Rheumatologist? Physician appoints add up in costs with so many players and some really don't know how to treat someone with the disease.
All patients need a primary care provider (pediatrician, internal medicine or family practice) in addition to their rheumatologist. The role of the primary care provider is to address medical needs that are unrelated to the Lupus, such as infections, non-lupus rashes and immunizations. The need for other specialists, such as OB/GYN, nephrology, dermatology etc depends on the specific lupus manifestations and thus should be discussed on an individual basis with your child’s providers.
7. What is the best way to handle a teen that is remiss in taking their medications but wants to have control over the process?
The best approach depends on the age of your teen and the reasons why they are remiss. Do they lack a system for remembering to take their medications that fits with their lifestyle? Are they too busy/on the go? Are they resistant to taking medication for fear of side effects? Are they feeling better and think that they no longer need medications? Understanding more about the reason(s) can help guide how you approach the situation and know who to involve in problem solving. In general, the younger the teen, the more supervision and structure they need. Try to set limits and create a medication system of checks and balances but avoid getting into a power struggle with them if at all possible. For older teens (16 and above), communication and negotiation are key. Set the stage ahead of time by letting them know you’d like to start a conversation with them about managing their own healthcare including evaluating with them what skills they already have and where they might need help. Medication management is part of this conversation. Acknowledge that they are older now and while they don’t need as much help as before, they need to learn the skills to manage their healthcare just as you had to when your child was first diagnosed. Do they know the names and dosages of their medications? What is their system for remembering to take their medication? Do they know their insurance information? Where and how to get medication refills? Who to call for help if they feel ill? Independence in managing one’s healthcare is particularly important for teens who will go away to college. Let them know that you will always be there to help them and try your best to refrain from judgment or criticism should they seek your help.
8. My daughter has been seeing a pediatric renal doctor about 2 hours away from our home. She was diagnosed with lupus nephritis at age 12. She is now 18 and we are looking at transitioning to adult nephrologist nearer to our home. How can we be sure that we get someone with the same philosophy on treatment as we had before? We were extremely happy with our pediatric doc. We do have a pediatric rheumatologist in town to help with that transition, but our pediatric nephrologist is of little help as she is from out of the area.
It is important for your daughter to understand that not all providers have the same philosophy, and she will need to consider all aspects of the provider when judging them. The best way to learn about a physician’s overall philosophy is to talk to other providers, so you might want to ask your daughter’s current providers if they know the new nephrologist. One important step will be to arrange for the pediatric nephrologist to send your daughter’s medical records to the new provider. You might also ask the providers to talk by phone to clarify any complex issues.
9. When you go for your first visit with the adult provider should the pediatric specialist send all medical records from the many yrs of service provided or a summary of care?
A summary of care is more useful and efficient for the adult provider. Often the pediatric provider will create a letter after the medical visits, and you can ask them to include a summary of care in their final letter. Supplemental documentation can also be provided, such as pathology reports from kidney biopsies, relevant radiology reports, a summary of immunosuppressive therapy used, and flow sheets of lab results if available.
10. How do you judge a healthy balance between drug side effects, disease symptoms and quality of life?
Finding this balance is very important and often a personal one. Unfortunately, it is not uncommon for the patient, parent, and medical provider to have different ideas about what is a “healthy balance”. It is critical that everybody have accurate information regarding all of the factors, including the long-term consequences of both medication side- effects and of uncontrolled disease. It is also important that there be an open and respectful discussion among all parties so that everybody has the opportunity to express their opinions. Often these discussions reveal misconceptions or anxiety that when addressed can result in an improved ability to achieve this healthy balance. It is important to revisit these discussions periodically as the perception of balance will likely change over time as the young person’s needs and concerns evolve.
11. My 17 year old daughter no longer wants me to be in the doctor’s office during her visits. Should I insist on being in the room during the appointment?
Many parents question how involved to be during their child’s doctors’ appointments as their children age. It may be helpful to better understand your daughter’s reasons for not wanting you to be in the doctor’s office with her. Do you answer questions for her as was necessary when she was younger? Is there a topic your teen would like to speak with her doctor about privately? If you are uncomfortable with her seeing her doctor independently, identify for yourself why. You can also share your concerns with your daughter and her doctor together and try to negotiate a plan that meets everyone’s needs. Although you are still responsible for your daughter and some aspects of her healthcare at this age, 17 is also a reasonable age to allow your child more privacy and independence with their healthcare providers. One idea is to see if you could be present for the last 5-10 minutes of the visit for a medical summary, recommendations, and to be aware of any changes in her treatment plan. Try to strike a balance between her need for independence and your need to know and understand important information that could affect her health.
12. What responsibilities should by child begin to take on as the transition to an adult rheumatologist?
The goal is for your child to begin to take on some responsibilities when they are young and to gradually add new responsibilities as they mature. This process needs to follow the developmental stage of the child so that you are not asking them to do things that are inappropriate for their age. But it is important to start young to lay the foundation for future independence. Specific tasks that should gradually be taken on by the patient include handling prescriptions and refills, tracking medication on a daily basis, scheduling appointments, carrying provider phone numbers and insurance information in their wallet, calling providers with changes in symptoms, handling insurance issues, advocating for themselves at school or work.
13. My daughter will be leaving for college next year. Is it important to have a rheumatologist near her school? Who will be her primary rheumatologist, the one near her college or the one near her family home?
The decision about whether or not to identify a second rheumatologist near school depends on a number of factors, including the medical needs of your daughter, whether or not she needs to receive infusions or lab draws while at school, how far away she will be, and how often she will be coming home. If you decide to identify a second rheumatologist near school, this may be a good time to try out an adult provider as a way of beginning the transition experience. Usually the two providers work together during this period, without identifying one or the other as ‘primary”. However arrangements can vary and thus you should discuss this with the providers directly. I also suggest that college students meet the staff in the student health department at their college soon upon arriving at school, so that they can get to know each other in case any problems develop.
14. What do you do when a teen always says they're fine even though it's obvious they're not?
Remember that it’s developmentally normal for teens to want more separation from their parents and to rely more on their peer group for support and disclosure. If you are worried, try spending more time with your teen without placing any demands on them to talk. Do an activity together. Watch a teen movie with your child that generates conversation. Teenagers will often reveal their thoughts when talking about people or ideas in indirect ways. How is it obvious your teen is not fine? If possible, talk with your teen about the observations you have and why you are concerned (e.g. “I see you are spending more time in your room and I’m wondering if you are feeling more down lately?”).
There are times when additional help is warranted. Some “red flags” to watch out for include increasing isolation, changes in your teen’s mood (“down”/depressed, irritable/explosive), tearfulness or frequent crying, changes in eating or sleeping habits, loss of interest in activities, abrupt changes in peer group, suspicion that your teen is using drugs or alcohol, suspicion that your teen is hurting themselves in some way, and thoughts of death, suicide or homicide in your teen. If you are concerned about any of these issues, contact your pediatrician, clinic social worker or rheumatologist for a referral to a mental health specialist for evaluation.
15. How do you ensure a teen has a healthy self-esteem when either medications (like chemo) or the disease itself make it difficult for a them to have a “normal” life, like going to parties, hanging out with friends on weekends, playing sports or even simply doing something after school?
How wonderful that you are thinking about this. Helping to support your child’s self-esteem is one of the greatest gifts you can give them. Having healthy self-esteem in the context of living with a chronic illness poses a formidable challenge, but not one that is insurmountable. Help your child acknowledge the feelings of loss they may be experiencing if they are no longer able to do the things they used to do. If your teen is in a particularly difficult phase of their illness (e.g. a Lupus flare, Cytoxan treatment), it can be useful to help them see this as a problem that will be present for a limited period of time, and not the rest of their lives (as it may feel). If possible, modify your child’s interests so that they are able to participate in activities they enjoy without physically challenging them beyond what they are capable of at this time. If they are unable to go out with their friends, can one or more friends come over to your home for a fun project or time to listen to music and “hang out?” If they were active in sports before, can they participate with their sports team without being physically active (e.g. scorekeeper, timer, coaches assistant, etc.)? Are there other activities or interests you can help them explore? Playing an instrument, taking an art class, or creative writing are all examples of low impact activities that help with self-expression.
Beyond these ideas, seek professional counseling for your teen and/or your family. Counseling can provide emotional support to your family as well as help you develop specific strategies to cope with the many challenges of raising a child with Lupus.