Reach Out October 2018

Personal Information Stories
of identity separate from their parents, determining the level of
independence from parents, forming deeper relationships with
peers, developing a system of values, increasing cognitive and social
skills and establishing skills for intimate relationships. 12
Medical conditions such as TSC, previously thought to be
primarily of paediatric concern are increasingly entering into the
realm of adult physicians, who may have less experience treating
these conditions than their paediatric colleagues. Evidence from
adolescent patients with other chronic medical conditions tells us
that loss to follow up and poor health outcomes are common. Adult
care is often more fragmented and less holistic than paediatric care,
and this can be a source of concern for people with TSC and their
parents. Parents are often worried that adult physicians may know
less about TSC than their child’s paediatrician, and that they also
tended to focus less on the patient’s psychosocial issues. 13 With high
rates (45%) of psychological distress found in people with TSC, this
is an important aspect of the condition to be addressed regularly. 14
The logistics of seeing several different adult specialists can be
difficult to navigate. Some children’s hospitals have TSC clinics where
patients can see a variety of specialists and allied health professionals
on the one day, facilitating a multidisciplinary approach to care.
More often these arrangements simply do not exist in adult hospitals,
which then requires the patient to visit specialists individually and
potentially on separate days, increasing the risk of loss to follow up. At
At the same time parents
are also adjusting their approach to
caring for their child who, as a young
adult, may wish for more autonomy
and self-sufficiency in their care.
the same time parents are also adjusting their approach to caring for
their child who, as a young adult, may wish for more autonomy and
self-sufficiency in their care. Although ‘guided self-management’ on
the patient’s part is an important part of a successful transition, this is
not always possible with TSC due to the varied ability to self-manage
and function independently from parents or caregivers.
Preparing for a transition to adulthood and
current practice
Early, ongoing and structured preparation is the key to a successful
transition. Discussions around this should ideally begin in early
adolescence and continue at regular intervals. Transitioning should
be seen as a normal part of an adolescent’s overall health care plan.
It should be prioritised in a person-centred manner based on what
is important to the patient. 15 Referrals to adult physicians should be
done well before the intended date of the appointment, as waiting
lists can be long - up to a year or more. Most children’s hospitals
will have a transition coordinator or team who can facilitate the
medical as well as social transition. In individuals who are able,
self-management skills can be gradually learned by attending
doctor consultations without their parents, if only for part of the
appointment. 16 Many patients with TSC will be unable to live
independently and planning for this should be discussed with
their transition team. This includes a discussion around powers of
attorney, advanced care planning and financial supports.
Typically the paediatrician and adult physician will have an overlap
year in which the patient will still see their regular paediatric neurologist
or specialist, but also see the adult physician at the same time. 17 This can
help the patient get used to a new hospital and new faces, and reduce
anxiety that can come from moving out of their comfort zone. Similarly,
if there are any issues that the patient is having with accessing adult
services, these can be discussed while they are still linked in to their
paediatrician. Some paediatricians will continue to see patients past the
typical age of transition due to the complexity of their TSC or difficulty
managing their care in the adult services.
Checklists are often employed by transition teams to help the
patient identify their needs and assess their readiness to transfer.
Checklists can help identify patients who may be at risk and establish
an objective view of what the patient already knows and what should
be discussed further. For example, the Royal Children’s Hospital
in Melbourne uses a checklist to assess whether the adolescent
understands their condition and medications, is able to help
themselves in an emergency and has adequate supports to ensure a
healthy lifestyle. 18 This is especially important with TSC where there
is a wide spectrum of ability to self-manage and be independent.
While it may seem simplistic, checklists provide an easy way to
prevent patients from falling through the cracks by necessitating a
discussion around specific issues that may otherwise be forgotten.
Maintaining continuity of care between
health professionals
Most transition policies recommend that a health care summary
is passed to the receiving specialist when the patient is referred to
them. Some hospitals have templates but not all specialties have their
own tailored transition document. This is an important piece of
information that should summarise the patient’s diagnosis, medical
history, complications, current and previous medications, surgical
history and social situation.
It is also important that the GP is involved in this process.
They can provide continuity of care throughout the transition and
be involved in ensuring the individual is able to live a healthy and
fulfilling life. Further, the GP may be involved in locating neurologists
or other specialists within the patient’s local area. They will have
been involved throughout the child’s life and have a historical record
of the patient’s hospital appointments with specialists and hospital
admissions on file. The GP is a valuable constant during a time of
change. Unfortunately, many people with chronic health conditions
requiring specialist attention do not have a regular GP.
Potential improvements in the process
Transition clinics involving the paediatrician and adult physician
collaborating side by side could be one way to facilitate the process.
Successful transition clinics in other countries have shared
several key attributes - a formal transition process, persistent and
dedicated health care staff, sufficient staff, and a close working
relationship between the paediatricians and adult physicians. 19
However, studies of multidisciplinary transition clinics have also
found that financial costs and organisational barriers were difficult
to work with and could risk the long term success and expansion of
these clinics. 20 These barriers, however, may be representative of a
general lack of knowledge as to how important this period is to the
long term health of individuals with chronic medical conditions.
A specialised TSC clinic for young adult patients could be one way
to ease the transition for patients and facilitate communication
between specialties. This has been implemented at Sydney
Children’s Hospital with great success.
Adolescence is a period rife with changes for all young
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