Publication year: 2012
Source:European Journal of Cancer, Volume 48, Issue 7
A.B. Edgar, S. Borthwick, K. Duffin, P. Marciniak-Stepak, W.H.B. Wallace
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 (<19years) diagnosed with cancer in a single institution in the UK between 1971 and 2003. All lost to follow-up survivors (not seen in clinic >2years) 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.
Source:European Journal of Cancer, Volume 48, Issue 7
A.B. Edgar, S. Borthwick, K. Duffin, P. Marciniak-Stepak, W.H.B. Wallace
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 (<19years) diagnosed with cancer in a single institution in the UK between 1971 and 2003. All lost to follow-up survivors (not seen in clinic >2years) 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.
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