Endocrine Abstracts (2012) 28 P143

Unrecognised late effects in 'lost to follow up' adult survivors of childhood cancer.

Anna Crown1, Fiona Wookey2, Karen Bashford3, Rosalynd Johnston4 & Anne Davidson3


1Endocrinology, Brighton & Sussex University Hospitals NHS Trust, Brighton, United Kingdom; 2Service Improvement Team, Brighton & Sussex University Hospitals NHS Trust, Brighton, United Kingdom; 3Paediatric Oncology, Brighton & Sussex University Hospitals NHS Trust, Brighton, United Kingdom; 4Haematology, Brighton & Sussex University Hospitals NHS Trust, Brighton, United Kingdom.


Adverse health outcomes in survivors of childhood cancers are well recognised. Optimal models of care and their effectiveness in improving outcomes are not yet well established. As a National Cancer Survivorship Initiative test site, we have been working to improve local service provision. We have established transitional and adult ‘late effects’ clinics, developed a local database of survivors and pro-actively sought out those who were ‘lost to follow-up’. The multi-disciplinary team includes a paediatric oncology Consultant and Specialist Nurse, with an adult endocrinologist and haematologist. To date, 42 adult patients have been reviewed. 21/35 (60%) who had received regular follow-up had a previously identified late effect; three new problems were identified as a result of attending the clinic. 6/7 of the ‘lost to follow up’ patients had an identifiable late effect, with four new problems diagnosed as a result of attending clinic. The new problems included primary hypogonadism, growth hormone deficiency, osteopaenia and cardiomyopathy. Several patients had been symptomatic (e.g. marked fatigue, shortness of breath) for many years. 30% of the patients were overweight and 23.5% were obese. Structured interviews with a sub-group of patients showed that although 90% knew their original diagnosis, only 10% knew what treatment they had had (i.e. chemotherapy and/or radiotherapy; not details of treatment regimens). There was very little knowledge about potential sequelae. 40% described depression or difficulties with relationships and 20% had concerns about their weight. Hospital correspondence revealed significant misconceptions about previous treatment received, and whether new health problems were related or not. Our experience suggests that specialist multi-disciplinary assessment of childhood cancer survivors enables education and information provision for both patients and other health-care providers; screening for predictable late effects enables treatment such as hormone replacement therapy which should improve quality of life and reduce the risk of long-term adverse health outcomes.

Declaration of interest: There is no conflict of interest that could be perceived as prejudicing the impartiality of the research reported.

Funding: No specific grant from any funding agency in the public, commercial or not-for-profit sector.

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