Transition of care in children with chronic disease
BMJ 2007; 334 doi: https://doi.org/10.1136/bmj.39232.425197.BE (Published 14 June 2007) Cite this as: BMJ 2007;334:1231
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Dr Wallis’ comments (1) on transitional care of children with chronic
disease are timely and very pertinent. In paediatric oncology,
transitional care services have been present for a number of years and are
at present being set up in most units that care for such patients.
With survival rates of paediatric cancer exceeding 80% there are at
present more than 250,000 people in the USA alone who are survivors of
paediatric cancer. It is estimated that by the year 2010, 1 in 570 people
would have had cancer at some point in their childhood. Most of them would
be affected by the physiological and psychological long term affects of
the disease and its therapy, and they do need long term follow up.
There are in general four models of transitional care programs:
disease specific, generic, primary care, and single-site which are as
follows: (2, 3)
Disease-specific: This is the model whereby the patient moves form a
paediatric disease specific team to a joint paediatric and adult team and
then finally to an adult specialist team. This is the model that is used
commonly in paediatric oncological transitional care services.
Generic: This is the model that is focussed on the needs of the
adolescent, whereby the young patient moves from a paediatric service to
an adolescent service and then onto the adult services.
Primary care: The general practitioner takes on the main role of care
coordinator in this model and would make referrals to paediatric and adult
specialist services as needed. A lot of our young patients have shown a
preference for this model of care as they often do not want the ‘hassle’
of coming back to hospitals, which is understandable as they would have
spent a lot of time in hospital during their treatment.
Single site: This uses the same familiar clinical outpatients
setting with young person moving from paediatric to adolescent to adult
services at the same site. Again this model works well once the initial
practical difficulties in setting up and co-ordinating adult and
paediatric clinics at the same clinical setting is resolved.
Another system that has works quite well is the ‘buddy’ system,
whereby one of the older patients who has made the transition from
paediatric to adult services takes on the role of a ‘buddy’ to support a
patient through the transitional process.
It is a shame that transitional care services are still not
universally available to all adolescent patients. It would truly be
unfortunate the support and good will of a patient earned by years of care
by the paediatric team were to be lost by a traumatic and hasty changeover
to adult services. All teams taking care of such patients need to make it
a priority to develop a proper working transitional care service for their
patients.
References:
1 Wallis C. Transition of care in children with chronic disease. BMJ
2007;334:1231-1232
2 Hobbie WL, Ogle S. Transitional care for young adult survivors of
childhood cancer. Semin Oncol Nurs 2001; 17: 268-273
3 Blum RW. Transition to adult health care: Setting the stage. J
Adolesc Health 1995; 17: 3-5.
Competing interests:
None declared
Competing interests: No competing interests
I fully subscribe to the points put forward by Wallis1 and Wicks2 on
the importance of providing good transition of care in children with
chronic disease. While steps are taken in this direction in several
developed countries we should not lose sight of the situation found in
some developing countries where transfer of care for children from a
paediatric to an adult service occurs abruptly when the child becomes 12
years of age. At this age outpatient visits to an adult setting can be
daunting and is not in the best interests of the child. Illnesses needing
in-patient care in an adult ward amplifies these problems and could be
psychologically detrimental for children aged 12 to 16 years of age. In
these countries extending the age limit for children receiving care in a
paediatric setting would be a first step before the next process of
providing proper transition clinics is to be tackled.
1. Wallis C. Transition of care in children with chronic disease. BMJ
2007; 334: 1231 – 2.
2. Wicks E. Cystic fibrosis. BMJ 2007; 334: 1270 – 71.
Competing interests:
None declared
Competing interests: No competing interests
I was saddened, but not suprised, to see no mention of primary care
in this article. It is likely,in the UK,that young people with chronic
diseases will have a GP. Over the course of their life that Dr will have
received numeours letters about their care and plans. These can be,and in
my view should be, educational. When dedicated paediatric care is no
longer needed adult expert clinics are needed but so is day to day care
and acute managment of disease complications. Though the current
organisation,post new contract, of GP care is less easy to navigate for
patients there would I would hope be a familiar face of someone who knows
this group of patients and their illness.
Competing interests:
None declared
Competing interests: No competing interests
Transitional services for young adults: role of rehabilitation teams and assistive technology neglected?
Wallis [1] is right to comment on the critical importance of the
psychosocial dimensions of supporting young people as they progress
through their teenage years. Having participated in a ‘transition’ clinic
for many years, I can attest to the critical importance of the change in
practice when the young person becomes the major focus of the consultation
and the parents are seen in their role as ‘carers’. One clear objective of
the transition process is to enable teenage youngsters with long term
disabilities (which may result from a congenital problem or the
consequences of conditions acquired in early life as well as a progressive
disease) to gradually acquire emotional independence from their parents in
the same way as non-disabled adolescents do. These emotional bonds are
likely to be greater than for non-disabled adults as caring has often
involved constant physical support e.g. lifting and carrying during
transfers, going upstairs etc.
Wallis stresses the importance of multidisciplinary teams. In the
adult services, these can often be provided by adult community
rehabilitation services where they exist. Such services often have
rehabilitation medicine physicians able to refer to or provide equipment
which can both enhance the quality of life for disabled youngsters and
reduce the strain on carers. Thus environmental control units can enable
young people to control their own environment, e.g. lighting, heating and
leisure facilities (televisions etc), reducing the demands made by the
young person for the assistance of others – often parents or friends [2].
Recognising that those with respiratory impairments may be more
physically disabled than some with neurological or musculoskeletal
impairments [3], electric powered wheelchairs (now available for certain
individuals under the National Health Service [4]) can transform lives.
Not only do they enable disabled teenagers to have independent mobility at
school, college and for leisure, but they can also facilitate sport and
exercise e.g. wheelchair football, which can play an important role in
their physical and emotional fulfilment [5].
References
1. Wallis C. Transition of care in children with chronic disease. BMJ
2007; 334: 1231-2
2. Paul SN, Frank AO, Hanspal R, Groves R. Exploring environmental
control unit use in the age group 10-20 years. Int J Ther Rehabil 2006;
13(11): 511-516
3. Hull RG, Prouse PJ, Sherratt C, Brennan P, Townsend J and Frank
AO. Capital costs of supporting very severely handicapped (VSH) and
appreciably handicapped (AH) people at home. Health Trends 1994; 26: 80-5
4. Frank AO, Ward J, Orwell N, McCullagh C, Belcher M. Introduction
of a new NHS Electric Powered Indoor/outdoor Chair (EPIOC) Service:
Benefits, risks and implications for prescribers. Clin Rehabil 2000; 14:
665-73
5. Evans S, Neophytou C, De Souza LH, Frank AO. Young people's
experiences using electric powered indoor-outdoor wheelchairs (EPIOCs):
potential for enhancing users' development? Disability &
Rehabilitation – in press
Competing interests:
Andrew Frank is Medical Director of Kynixa, a rehabilitation case management company
Competing interests: No competing interests