Survivors of childhood cancer lost to follow-up can be re-engaged into active long-term follow-up by a postal health questionnaire intervention

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• 作者：A.B. Edgar^a ; ^{angela.edgar@luht.scot.nhs.uk} ; S. Borthwick^b ; K. Duffin^b ; P. Marciniak-Stepak^c ; W.H.B. Wallace^a
• 关键词：Childhood cancer ; Treatment ; Survival ; Cure ; Late effects ; Models of follow-up ; Long-term follow-up
• 刊名：European Journal of Cancer
• 出版年：2012
• 期刊代码：88_09598049
• 类别：med
• 出版时间：May, 2012
• 卷：48
• 期：7
• 页码：1066-1073
• 文件大小：525 K

摘要

Lifelong long-term follow-up (LTFU) is recommended for all survivors of childhood cancer. National guidelines recommend risk-stratified levels of follow-up by a multidisciplinary team, in an age-appropriate environment. Many survivors do not participate in long-term follow-up.

Objective

To re-engage childhood cancer survivors lost to follow-up in late effects programmes by means of postal questionnaire.

Population and methods

Retrospective cohort study of all children (<19 years) diagnosed with cancer in a single institution in the UK between 1971 and 2003. All lost to follow-up survivors (not seen in clinic >2 years) were sent a postal health and well-being questionnaire.

Results

831 patients were diagnosed with childhood cancer between 1971 and 2003, with 575 long-term survivors (overall survival rate 69%). Information was available on 550 survivors (males 290 (53%), median age (range) at review 18.8 (5.4-44.2) years and at diagnosis 5.0 (0.0-18.8) years, and disease free survival (range) was 10.8 (1.0-37.4) years. Of the 550 survivors, 256 (46%) were lost to follow-up. 99 (39%) of lost to follow-up survivors returned completed postal questionnaires (58%female). 45%of responders reported at least one late effect, 36%mild-moderate, and 8%severe-life threatening. 19%reported two or more late effects. 74%of all childhood cancer survivors are now in active follow-up.

Conclusions

Almost half (46%) of all long-term survivors of childhood cancer are lost to follow-up, Postal follow-up is an effective means of re-engaging more than one third of survivors of childhood cancer in active long-term follow-up, half of whom had at least one late effect.