‘Listening to Patients’: what is the value of age-appropriate care to teenagers and young adults with cancer?

Abstract

Current healthcare policy increasingly recognises the importance of patient experience in determining care. The 2005 UK National Institute for Health and Clinical Excellence Improving Outcomes Guidance encompasses caring for young people with cancer in an age-appropriate model of care developing regional principal treatment centres for this purpose. When published this was based upon limited outcomes evidence, and only a small amount of teenage and young adult patient and parent opinion. We have systematically reviewed the literature between 1996 and 2008, examining how far the experiences of this patient group support or refute the current policy. The recent literature describes with increasing consistency that teenage and young adult cancer patients have specific care needs, and gain benefits from an age-appropriate environment of care, including peer group support, age-appropriate information, recreational and vocational support, and staff expert in both the cancer and care of their age group. Many patients are prepared to travel to receive such care, if services are not in place to deliver excellent shared care between principal treatment centres and services nearer home. Some of these needs are unmet in non-specialist units. There remains, however, a paucity of rigorous comparative studies quantifying the value of specialist cancer care for this patient group.