Neurofibromatosis in early adulthood: A brief guide - Health Care Professionals 

Kylie Clark is a Clinical Nurse Consultant who coordinates the multidisciplinary NF Clinic at The Royal Children’s Hospital (RCH) in Melbourne. Kylie is a paediatric nurse who delivered a well-received presentation at the recent NF-Clinical Symposium in Sydney. Kylie manages the care of hundreds of young people living with NF. She shared her insights into the challenge teenagers with NF face when growing up and maturing in life and how NF-specialists can show support.

Developing into adults is hard enough for any teenager, but for those with NF additional issues pop up creating stress. This includes the unavoidable transitioning from paediatric to adult hospital care. At RCH, a specialised NF-Transition Program has been introduced to support adolescents with NF as well as their treating doctors.

It is developed to encourage patients to better understand their medical condition and to take responsibility for their lifelong care. Starting at 16 years of age, the program allows patients to become prepared before big changes in their medical care start at 18.

Kylie used an anonymous case study of a teenage girl with NF to illustrate to NF-specialists what significant issues a young person with NF needs to consider, issues that go well beyond what life normally throws at them during this tricky phase of life: tumour risk, cosmetic stress, cognitive challenges and reproduction.

In Kylie’s words, ‘it is our role as clinicians, to monitor, educate, empower and refer this cohort to ensure that they maintain their best quality of life’. And exactly these responsibilities are facilitated by the Melbourne program with guiding advice to clinicians and health professionals caring for teenagers with NF.

Monitor: Clinicians are recommended to schedule yearly health reviews, including blood pressure and skin checks, to support adolescents with NF in taking responsibility for their medical condition. Automated reminders via hospital Apps, phone, email or post can further help them to develop the necessary organisational skills to attend health appointments in the future.

Educate & Empower: Clinicians are stimulated to strengthen the confidence of young adults with NF and manage their own long term care by reiterating how important it is for them to monitor fast growing neurofibromas and for young women to undergo breast screening. This in light of their heightened risk of developing malignant peripheral nerve sheath tumours (MPNST) and breast cancer.

Refer: Various specialised care and support services are available for NF-patients and timely referrals by their clinical specialists can reduce the psychological burden of growing into adulthood on young people with NF. To mention a few: plastic surgery for cosmetic correction of neurofibromas, psychological services for establishing mental health plans and genetic counselling for those considering family planning,

Young people with NF as well as all those who care for them in the hospital system should know that initiatives like this transition program at RCH are in place to better understand the complexities of coming of age with NF and help. The program also recognises the value of sharing experiences with peers and refers to the opportunity to attend CTF-Australia’s monthly ‘NF Connect’ meetings online.

You can read more about Kylie Clark and her role at the "Get to know Australian NF Researchers" Interview here.

If you would like to read the Patient and Carers version of this summary you can view that here.