Developing skills around self-advocacy is essential in transitioning to adult care. As AYAs prepare to move to an adult transplant team, they learn how to communicate confidently and effectively with providers, engage in their medical care, and manage appointments. This section is designed to provide the multidisciplinary team with information and strategies to build and strengthen their patients’ emerging self-advocacy skills. A multidisciplinary healthcare team plays a key role in guiding and supporting AYAs as they assume more responsibility for their care.
Discussion Points for Providers and AYA
In addition to transplant healthcare and associated comorbidities, the YA needs to understand the importance of routine follow-up for their general healthcare needs. Although recommendations vary by center, organ type, and the YA’s underlying condition, the following healthcare routines and monitoring may be recommended:
- Skin care: The risk of developing skin cancer is significantly higher in transplant recipients who are immunosuppressed due to the impaired ability of the immune system to detect atypical cells. Patients at highest risk for skin cancer include heart or lung recipients, being 50 years or older at the time of transplant, and male gender (Crow LD 2019). Additional risks to be considered include a history of extensive sun exposure, family history of skin cancers, fair or easily burned skin, red or blond hair, and blue, green or hazel eye color.
- Avoid prolonged sun exposure when UV light is at its peak between 10 AM and 4 PM.
- Use a skin protection factor (SPF) sunscreen of 30 or greater to protect your skin from the sun. Apply this lotion to all exposed areas and reapply after being in the water, sweating, or when you are outside for an extended period.
- UV light barrier clothing, wide-brimmed hats, and sunglasses are also helpful.
- Assess your skin routinely for any changes and have a comprehensive skin examination annually by your local dermatologist or a transplant dermatologist at your transplant center. How can I tell if I have skin cancer?
- Radiation from indoor tanning beds is associated with a significantly increased risk of melanoma. Transplant recipients should never use tanning beds.
- Bone health: The adult team usually recommends a baseline DEXA scan to assess bone density. This may be repeated every one to three years depending on individual risk. Bone loss can be prevented or minimized by weight-bearing and muscle-strengthening exercises, good nutrition, and avoiding tobacco and alcohol use. Vitamin D supplementation is often prescribed.
- Over the Counter (OTC) medications: Transplant recipients, similar to the general population, will acquire common illnesses with the associated symptoms and complaints. Although there are some OTC medications that need to be avoided, transplant recipients may use many of the OTC medications that are recommended for cold symptoms, diarrhea, constipation, muscle aches, headaches, and/or seasonal allergies. However, they should always contact their primary care provider or transplant team if they develop fever with these symptoms.
- Ibuprofen products are not recommended for transplant recipients, particularly in the first few months post-transplant due to its affect on the kidneys and liver, and the risk for gastric ulcers.
- Alcohol-containing cold remedies should be avoided.
- Nutritional supplements should not be used unless this is approved by the transplant dietitian and team.
- Herbal remedies should be avoided. These remedies may interact with prescribed medications and affect graft health.
- Providers are recommended to review: Pilch NA, et al. Important considerations for drugs, nutritional, and herbal supplements in pediatric solid organ transplant recipients. Pediatr Transplant. 2021 Feb;25(1):e13881. doi: 10.1111/petr.13881. Epub 2020 Nov 3. PMID: 33142023.
- Risk-Taking Behaviors
- Activity and exercise: Physical activity is important for everyone and can minimize cardiovascular disease in transplant recipients (Lubriano R 2012). Physical activity recommendations from the US Department of Health and Human Services advises that teens engage in daily physical activity for 60 minutes or more that is mostly of moderate to vigorous intensity. Aerobic activity that strengthens muscles and bones is advised. Providers should discuss the importance of activity for transplant recipients with recommendations based on the type of organ, their underlying condition, current health status, and any physical limitations.
- Nutrition and weight management: Guidelines for good nutrition should be reviewed routinely with a discussion of a sample dietary intake. They should be advised to have a variety of foods from each of the food groups including fruits, vegetables, whole grains, meats, and milk products. Fiber-containing foods are encouraged and they should be reminded to avoid high fat and excess sugar. Maintaining a healthy BMI within the appropriate range for height and weight, and in consideration of any health issues, is recommended and should be monitored routinely. Drinking adequate fluids daily for their specific needs is also important to encourage.
- Vision screening: As in the general population, transplant recipients should have routine vision screenings and schedule an exam for any vision issues. Although rare, long-term steroid use post-transplant is associated with cataract development and glaucoma. CMV retinitis is rare, but an incidence of 3% has been reported in solid organ transplant (Berman H. 2022). Screening for CMV retinitis should follow center practice guidelines.
- Dental health: Maintaining healthy teeth and gums is an important component of care for transplant recipients since they carry a higher risk for complications from infections due to being immunosuppressed. Recommendations are similar to those for the general population:
- Patients should be advised to brush their teeth twice daily, particularly at bedtime.
- Flossing should be completed daily to remove additional food debris and decrease plaque formation.
- Patients should have dental cleanings and exams every six months.
- In addition to the above, good dental health can be maintained by eating a nutritious diet with the recommended amounts of calcium, vitamin D, and phosphorus. High sugar snacks and soft drinks should be limited or avoided since they contribute to tooth decay.
- Transplant patients may be at risk for candidiasis. Patients should be aware that this infection presents as white plaques on the tongue, oral mucosa and in the throat. It may occur early on post-transplant when immunosuppression levels are high or if immunosuppression is increased to treat rejection.
- Gingival hypertrophy is a complication of cyclosporine, phenytoin, and calcium channel blockers. Minimizing or discontinuing the causative medication and antibiotic therapy may be included in treatment. Patients should brush their teeth regularly with a very soft toothbrush. In some cases, gingivectomy may be required.
Have a discussion with the AYA about how to decrease their risk of skin cancer. Encourage them to consider the following strategies: 10 surprising facts about indoor tanning
- Provide recommendations for joining nonprofit organizations or support groups that are dedicated to transplant and/or their disease if the young adult is interested in peer support.
Self-Advocacy Skills Assessments
Additional self-advocacy information:
Strategies for Supporting Teens with Chronic Illness (brightfuturesny.com)
Communicating Effectively with Teens About Their Health (brightfuturesny.com)
10 Important Self-Advocacy Skills for Adults with Chronic Illness (nurselovesessentials.com)
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