To the Editor: We read with interest the article by Mitchell et al and the editorial by Cole on comparatively adverse outcomes in adolescents and young adults with cancer.1,2 The improvements in cancer survival, most remarkably demonstrated in children, have failed to similarly benefit older adolescents and young adults, a population with a higher and increasing incidence of cancer.3 Most authors advocate increasing research, networking resources and information, enhancing support for clinical trials and facilitating participation in them. Recently announced funding for a comprehensive cancer-care program for adolescents and young adults at the Peter MacCallum Cancer Institute in Melbourne is a welcome step towards these goals.

The specific emotional and psychosocial needs of this age group are also poorly addressed within traditional models of care.4 Patients in this group express strong preference for peer support, opportunities to be cohorted with each other and access to specific support services.4 The short and long term sequelae of cancer, as well as of its treatment, in adolescents and young adults create particular challenges for both healthcare professionals and the broader community. In December 2003, an entire issue of the European Journal of Cancer was dedicated to adolescent oncology — this science, clinical care and the needs of the patient population.5 An important development in the United Kingdom has been the establishment of eight “teenage cancer units” with a comprehensive approach to all aspects of care.6 Preliminary research in Australia and New Zealand by one of our group (J E) highlights gaps in service and support perceived by consumers, concerns yet to be addressed by appropriate policy and funding.7

The paediatric model of care has provided not only excellent survival but also an exemplary family-centred and comprehensive support system. The recent emphasis on the transition process for adolescents with a variety of chronic illnesses has highlighted systemic differences between the paediatric and adult models. Some paediatric oncologists, especially in the United States, have proposed raising the upper age limit for eligibility to childhood cancer units as a solution. A more realistic approach, particularly in Australia, requires establishing specialist facilities operated in partnership between (preferably collocated) adult and paediatric units, with subspecialisation of the multidisciplinary workforce, an age-appropriate environment and peer support from groups like the Australian Organisation for Young People Living with Cancer (CanTeen). This approach is capable of addressing all of the above issues, from better science through to psychosocial expertise appropriately targeted for age.

The ideal number and distribution of such centres/partnerships should be guided by the paediatric track record for balancing centralisation and quality with access and family focus.

To the Editor: It has been claimed that patients are missing out on the most effective current treatments if they are not given an opportunity to enrol in clinical trials. Such statements are misleading and have the potential both to create concern in those without access to trials and to reduce the likelihood of true informed consent for involvement in trials.

Trials are, by definition, just that — trials. Treatment in the “innovative” arm(s) may result in worse outcomes. The finding that those involved in trials have a better outcome (eg, 5-year survival) may have numerous explanations. It is unlikely that the innovation is an adequate explanation for the finding — confounding factors such as selection bias, adherence to best current practice, and intensity of monitoring are more likely explanatory factors.

Furthermore, it is important to focus on other outcomes of therapeutic endeavour, such as quality of life, and the impact of the illness on other family members. Patients who live some distance away from tertiary referral centres or trial centres may have a greater adverse effect from involvement in a trial than other patients who live close to such centres.

Well designed trials are a crucial part of advancing medical therapeutics. However, the recent editorial by Cole1 and the article by Mitchell and colleagues2 in the Journal have been picked up by the news media as demonstrating that only through involvement in clinical trials can patients get best-quality care. It is not surprising that this is the way that the message has been received. The truth is importantly different. It is only through the conduct of clinical trials that best practice can be defined. However, patients anywhere in the country should be able to access current best-practice treatment even if they do not want to be involved in a clinical trial. Encouragement to participate in clinical trials should be based on arguments about the “greater good” and not about issues of quality of care. To use the latter as the basis for argument must be seen as coercion and as unethical.

In reply: Thomson is correct in stating that patients involved in clinical trials have better 5-year survival rates when compared with patients not recruited into clinical trials. There may, as Thomson points out, be numerous possible explanations for this finding. Nonetheless, this improvement in survival is well documented and has been recognised for some time.1

Although it is becoming increasingly important to focus on other therapeutic outcomes, such as quality of life, it is incorrect to assume that involvement in clinical cancer trials equates to impairment of quality of life and an increase in adverse effects. In fact, the primary end-point of numerous clinical cancer trials is improved quality of life.2

We agree with Thomson when he states that patients anywhere in the country should be able to access current best-practice treatment. We agree that best-practice treatment can only be defined through the conduct of clinical trials. Hence, well designed clinical trials are necessary, and indeed crucial, to the advancement of cancer therapy. In the context of adolescents and young adults with cancer, the lower than expected improvement in survival may be explained, in part, by a low rate of participation in clinical trials.3 There is no doubt that participation in late-phase clinical trials provides a “benchmark” and ensures the provision of quality medical care. Rural and regional settings should not, a priori, be a barrier to trial participation. Adequate infrastructure and support should be available for such centres to participate.

Greater cooperation between all adult and paediatric clinicians involved in the care of adolescents and young adults with cancer is essential to ensure that the inequity in survival is corrected.