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EDITORIALS: Colin Wallis Transition of care in children with chronic disease BMJ 2007; 334: 1231-1232 [Full text]

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No mention of primary care

John Sharvill   (17 June 2007)

Too young to be cared for by an adult service

Suranjith L Seneviratne   (18 June 2007)

Setting up transitional care services should be prioritised

Santanu Sen   (18 June 2007)

Transitional services for young adults: role of rehabilitation teams and assistive technology neglected?

Andrew O. Frank   (25 June 2007)

No mention of primary care 17 June 2007
John Sharvill, Family Doctor Deal Knet Send response to journal: Re: No mention of primary care	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
Too young to be cared for by an adult service 18 June 2007
Suranjith L Seneviratne, Consultant Manchester Royal Infirmary, Manchester, M13 9 WL Send response to journal: Re: Too young to be cared for by an adult service	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
Setting up transitional care services should be prioritised 18 June 2007
Santanu Sen, Specialist Registrar in Paediatrics Mayday University Hospital, Croydon, London. Send response to journal: Re: Setting up transitional care services should be prioritised	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
Transitional services for young adults: role of rehabilitation teams and assistive technology neglected? 25 June 2007
Andrew O. Frank, Consultant Physician in Rehabilitation Medicine & Rheumatology Arthritis Centre, Northwick Park Hospital, Harrow, HA1 3UJ Send response to journal: Re: 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