Journal of Public Health Advance Access originally published online on February 27, 2007
Journal of Public Health 2007 29(2):178-182; doi:10.1093/pubmed/fdm006
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Where do teenagers and young adults receive treatment for cancer?
Jeremy Whelan, Consultant Oncologist1
Catherine Dolbear, Information Analyst2
Vivian Mak, Information Analyst2
Henrik Møller, Director and Professor of Cancer Epidemiology2
Elizabeth Davies, Senior Lecturer in Cancer Registration2,
1 Department of Oncology, University College Hospital, 250 Euston Road, London NW1 2PG, UK
2 King's College School of Medicine, Thames Cancer Registry, Capital House, 42 Weston Street, London SE1 3QD, UK
Address correspondence to Elizabeth Davies, E-mail: Elizabeth.Davies{at}kcl.ac.uk
Background Little is known about where teenagers and young adults receive their first cancer treatment.
Method We extracted data on 2260 residents of southeast England diagnosed with a malignant neoplasm aged 10–24 between 1998 and 2002 from the Thames Cancer Registry database. We identified 11 cancer network areas of residence, and the hospital and network where each patient received their first chemotherapy treatment. We classified hospitals as those including paediatric oncology centres, cancer centres with a teenage cancer unit or adult cancer centres or units. We examined how many patients in each of the age groups 10–14, 15–19 and 20–24 travelled outside their network of residence for chemotherapy.
Results Overall 45% (1018) received chemotherapy. Three networks had paediatric oncology centres, and one also had a teenage cancer unit. Most 10–14-year-olds were referred from their network of residence to networks with these services. However, there was an increasing tendency for patients aged 15–19 and 20–24 to be treated within their network of residence and to be referred less commonly.
Conclusions Many young people with cancer are not referred to services providing care tailored to the needs of their age group. The absence of any pattern to referral, despite the presence of a teenage cancer unit in the area, suggests a lack of coordinated referral practice within and between cancer networks.
Keywords: cancer, hospital care, health services
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Introduction |
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There is a growing recognition that teenagers and young adults with cancer fall into a care gap between paediatric and adult oncology services.1,2 Accumulated evidence shows that teenagers and young adults require special attention, in part because of data suggesting poorer outcomes without this.3 National NICE guidance for commissioning services now recommends that young people should have access to age-appropriate care as well as clinical expertise.4 This may best be provided under a model of centralized care, similar to that for children and adults. Within this system the unique physical, social and educational needs, as well as the clinical needs, of this age group can be recognized and support provided by both peers and professionals. Almost all children with cancer aged 15 years or less are treated in one of the 20 designated UK Children's Cancer Study Group Centres. There are just seven dedicated cancer units for teenagers and very few identifiable specialist services for young adults. The incidence of different types of cancer changes through teenage and young adulthood from diseases including leukaemias, lymphomas and sarcomas to the carcinomas which are more common in older adults. Little is known about the preferences teenagers and young adults attach to local referral for treatment vs referral away to a centre that can offer specialist expertise in clinical care and psychosocial support appropriate to their age. The proportion of teenagers and young adults referred for specialist care in teenage or paediatric centres or treated locally is also unknown.
The Thames Cancer Registry is the largest population-based registry in Europe covering 14 million residents in southeast England. We developed a method for mapping patient pathways across 11 cancer networks in our area to determine where patients received their first treatment, whether they were referred outside their network of residence for treatment and whether they received this in a recognized specialist centre.
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Methods |
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In the UK cancer registries record the occurrence of cancer in their residential populations. Registration is initiated by clinical and pathology information received from hospitals and by information about deaths provided by the National Health Service Central Register through the Office for National Statistics. Data is collected on demographic and tumour details and on treatments received in the first six months after diagnosis.
From the Thames Cancer Registry database we extracted data on 2260 residents diagnosed with a malignant neoplasm between the ages of 10 and 24 in the years 1998–2002. For each patient we identified their diagnosis, cancer network of residence, and the hospital and network where they received their first treatment. We classified diagnoses using the Birch classification, a scheme based on morphology rather than site and therefore more useful for reporting tumours occurring across this age group.5 We chose first chemotherapy as the treatment by which to follow patients because chemotherapy is an important, usually complex, component of management of many tumour types in this age group. Surgical procedures appeared to be less reliable indicators of the start of definitive treatment. Forty-five percent (1018) of all patients registered were recorded as having received chemotherapy. We classified hospitals as including cancer centres with a paediatric oncology centre, cancer centres with a teenage cancer unit, or as adult cancer centres or cancer units. We classified care in hospitals including paediatric centres and in teenage units as ‘specialized’ as these were most likely to be able to provide both age appropriate clinical care and psychosocial support at least for teenagers. From the registry data we could determine the hospital where the patient received their chemotherapy but not the specific ward or unit in which it was administered.
We then examined how many patients travelled outside their cancer network of residence for this treatment (‘outflows’) and how many remained in their network of residence (‘residents’). Data were analysed separately for the three age groups, 10–14, 15–19 and 20–24 years. These groups were chosen to reflect common service divisions between paediatric and adult services and the pattern of different types of cancer in different age groups.
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Results |
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Table 1 shows the tumour type by age group for patients in the sample. As expected leukaemias, lymphomas, central nervous system and bone tumours were more common in the younger age groups, while germ cell tumours, melanomas and carcinomas were more common in the 20–24 year group. Table 2 shows that the proportion of patients receiving chemotherapy differed by age group with those aged 10–14 more commonly receiving this treatment (62%) than those aged 20–24 (36%).
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Two networks had paediatric oncology centres, both as part of hospital trusts that provided the full range of cancer services for adult patients as well. A third network had both a paediatric oncology centre in a children's hospital and a second trust which included a paediatric oncology unit, a teenage cancer unit and adult cancer services. The teenage cancer unit provided educational, counselling and psychological support services. There was no cross appointment of clinicians between networks nor any peripatetic teenage services.
Table 3 shows that overall the majority of 10–14 year olds were referred from their cancer network of residence to one with a paediatric oncology centre or teenage cancer unit for their first chemotherapy treatment. However, there was an increasing tendency for patients in the age groups 15–19 and 20–24 to be treated within their cancer network of residence and to be less commonly referred to a specialist service. The exceptions were those patients living in two of the networks which had either a teenage cancer unit or a paediatric oncology centre (see Table 4).
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The differing diagnostic profile of the older group, and in particular the less frequent indications for chemotherapy for the more common cancers in that group, may be a significant influence on referral practice. The small numbers of patients with different diagnoses treated within different cancer networks mean it is not possible to compare survival by network of residence or by network of referral in any meaningful way over such a short period of time. However, when five-year relative survival for the entire groups of patients with all tumour types was investigated over a much longer period, 1988–2002, with follow-up to the period 1999–2002, no difference in survival by cancer network of residence emerged.
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Discussion |
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Main findings of this study
We found that the referral of teenagers and young adults to specialist cancer care for their first chemotherapy treatment varied by age group and by their cancer network of residence. Overall, 76% of 10–14 year olds were referred to another network, compared with 56% of 15–19 year olds and 42% of 20–24 year olds. While 87% of the group aged 10–14 were referred to a specialist unit—either a paediatric or teenage cancer unit—only 23% of patients aged 15–19 were treated in a teenage cancer unit. The remainder were treated in either paediatric or adult units, although this varied by cancer network.
What is already known about this topic
Models of care for young people have been developed which can deliver expert specific care alongside services appropriate to their psychological, social, educational and vocational needs.6 Outcomes from treatment for acute lymphoblastic leukaemia, and perhaps other malignancies common in this age group, are inferior to those of children, and may be dependent on choice of treatment and type of centre.7 The results of feedback from young people about their experience of care sets the opportunity for peer support and features of the care environment as priorities.3
What this study adds
These findings indicate that many young people with cancer are not currently being referred to services that are likely to be able to provide both clinical expertise in the treatment of their tumour type and support tailored to the needs of their age group. They may instead receive treatment in adult wards in local networks, or in paediatric wards. While it is possible that teenagers and young adults with carcinoma and haematological malignancies may be treated by those with clinical expertise in these tumour types, the experience of providing psychosocial needs of these ages group is likely to be limited in these units. The range of variation in external flows from network to network appears to be large. The absence of any pattern to referral, despite the presence of a teenage cancer unit in the area, suggests a lack of coordinated referral practice within and between cancer networks and the under-development of services for young adults. It is likely that several factors influence referral, such as tumour type, differing perceptions of need and expertise, availability of adequate capacity, traditional practices and patient choice. This area deserves further study.
As national guidance for care of children and young people with cancer is implemented cancer networks will need to work together to ensure in particular that teenagers and young adults receive age-appropriate care and that resources for this specialist care are available.3,4
Possibilities include the development of robust regional approaches to commissioning services, the agreement of clear referral pathways, peripatetic services or the development of an additional teenage cancer unit in the area. The routine work of the cancer registries can monitor the effect on referral patterns and research should evaluate the impact this intervention has on future treatment outcomes and patient experience.
Limitations of this study
The main limitations of this study are the absence of information on patient preference for referral and about whether the choice about referral was made by the patient, their family or by their referring clinician. In addition, the small number of patients diagnosed with these cancers over a five-year period means that even a large registry like the Thames Cancer Registry does not collect sufficient numbers to conduct meaningful survival analyses to detect differences subsequent to referral to specialized services. One element of specialized care is the more frequent inclusion of patients in cancer trials. Routine cancer registration does not yet record whether patients are entered into trials but there are plans to integrate this data in the future national cancer dataset. The findings from this study confirm the need to analyse existing registry data for these age groups at a national level to determine patterns of care and outcomes across the country.
Competing interests
J.W. was a member of the NICE Guidance Development Group. E.D. was involved in referring the topic to NICE during a training attachment at the Cancer Action Team.
Ethical approval
Not required.
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References |
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- Leonard RCF, Gregor A, Coleman RE, Lewis I. Strategy needed for adolescent patients with cancer. Br Med J (1995) 311:387a.
[Free Full Text] - Bleyer A. The adolescent and young adult gap in cancer care and outcome. Curr Probl Pediatr Adolesc Health Care (2005) 35(5):182–217.[CrossRef][Medline]
- National Institute for Health and Clinical Excellence. Improving Outcomes with Children and Young People with Cancer. The Evidence Review (2005) (accessed 14 November 2006). http://www.nice.org.uk/pdf/C&YPEvidencereview.pdf.
- National Institute for Health Clinical Excellence. Improving Outcomes with Children and Young People with Cancer. The Manual (2005) (accessed 14 November 2006). http://www.nice.org.uk/pdf/C&YPManual.pdf.
- Birch JM, Alston RD, Kelsey AM, Quinn MJ, Babb P, McNally RJ. Classification and incidence of cancers in adolescents and young adults 1979–1997. Br J Cancer (2002) 87:1267–74.[CrossRef][Web of Science][Medline]
- Whelan JS. Where should teenagers with cancer be treated? Eur J Cancer (2003) 39:2573–8.[CrossRef][Web of Science][Medline]
- Pearce MS, Parker L, Windebank KP, Cotterill SJ, Craft AW. Cancer in adolescents and young adults aged 15–24 years: a report from the North of England Young Person's Malignant Disease Registry, UK. Pediatric Blood Cancer (2005) 45:687–93.[CrossRef][Web of Science][Medline]
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