Second cancers after childhood cancer--GPs beware!

BACKGROUND: One of the long-term effects in childhood cancer survivors (CCS) is the development of second cancers. In a cohort of CCS, this study describes how second cancers were presented, the way they were diagnosed, and the knowledge CCS had about their increased risk to develop a second cancer. PATIENTS AND METHODS: Selected participants were all adult five-year CCS (n = 1275) who were treated at the University Medical Center Groningen since 1965. Of these, 84 (6.6%) had developed a second cancer, of which 27 had died. The 57 survivors were asked to participate in a telephone interview. RESULTS: Of the 57 CCS, 35 (61%) participated. Together they had developed 45 second cancers. Most participants (97%) were seen at the long-term follow-up clinic. Of all second cancers, 89% caused symptoms. Of all second cancers, the majority (56%) were first presented at the general practitioner's (GP's) office and 20% at follow-up testing. Of these CCS, only 28% were aware of their increased risk of developing a second cancer. CONCLUSIONS: It is important to inform CCS continuously regarding their increased risk, as a relatively small percentage are aware of this. Since most of these patients first reported their symptoms to the GP, all GPs should be aware of this increased risk, in particular because this concerns cancer at a younger age than normally expected. A survivor care plan might be an effective way of communication with both CCS and GPs.

Family doctor-driven follow-up for adult childhood cancer survivors supported by a web-based survivor care plan.

PURPOSE: To facilitate family doctor-driven follow-up for adult childhood cancer survivors, we developed a survivor care plan (SCP) for adult survivors and their family doctors. METHODS: The SCP was accessible for survivors and their family doctors on a secure website and as a printed booklet. It included data on diagnosis, treatment and potential risks as well as recommendations for follow-up. Childhood cancer survivors who were off-treatment ≥5 years, aged ≥18 years and not involved in a long-term follow-up program were eligible. They were advised to visit their family doctor. The endpoints were numbers of participants, adherence of family doctors to the guidelines and satisfaction ratings. RESULTS: The eligibility criteria were fulfilled by 108 survivors. Three family doctors and 15 survivors refused, 10 survivors were non-responders. Of the remaining 80 survivors, 73 survivors visited 72 family doctors. Sixty-nine (96%) family doctors returned data of whom 60 (83%) fully adhered to the recommended tests. The majority of survivors and family doctors were satisfied about the SCP. CONCLUSIONS: A (web-based) SCP for survivors and family doctors can serve as an effective communication vehicle to provide adequate shared care by the long-term follow-up clinic and family doctors.

Late effects in adult survivors of childhood cancer: the need for life-long follow-up.

BACKGROUND: To assess health status and health-related quality of life (HRQoL) in childhood cancer survivors who were not involved in regular long-term follow-up. PATIENTS AND METHODS: One hundred and twenty-three long-term survivors, median age 33 (19-50) years, follow-up 27 (9-38) years, were recalled to the long-term follow-up clinic. Most of them were treated in the period 1970-1990. Late effects were graded using the Common Terminology Criteria for Adverse Events, version 3 (CTCAEv3). HRQoL was assessed by RAND-36. Socio-economic factors were compared with data from Statistics Netherlands (CBS). RESULTS: Grade 1-2 late effects were found in 54% of the survivors, grade 3-4 in 39%, two or more late effects in 70% and grade 2-4 previously unknown late effects in 33%. Survivors had significantly lower scores on RAND-36 compared with controls. CONCLUSIONS: As nearly 40% of these long-term childhood cancer survivors suffer from moderate to severe late effects and 33% had previously unknown late effects it is worthwhile recalling these patients to follow-up. Where and by whom this follow-up can best be done is still a question that needs to be answered.

Health-related quality of life and adverse late effects in adult (very) long-term childhood cancer survivors.

METHOD: The RAND-36 was used to assess HRQoL in all adult (> or =18 years) survivors who had attended the long-term follow-up clinic since 1995. The survivors were divided into two groups based on the length of follow-up: Group LF (long term follow-up, follow-up > or =20 years, n=129) and Group VLF (very long-term follow-up, follow-up >20 years, n=184). Data on diagnosis, treatment and complications were obtained from medical records. Late effects were graded using the CTCAEv3. RESULTS: The RAND-36 was completed by 313 (86.2%) out of 363 eligible patients. Except for higher scores on the subscale Bodily pain, LF patients did not differ significantly on the RAND-36 subscales from the population sample; VLF patients had significant lower scores on the subscales Physical functioning (P=0.003), Social functioning, Vitality and General health perception (P<0.001). Significantly more VLF patients (P<0.001) had severe (grade 3 and 4) late effects (47.8%) compared to LF patients (27.9%). Female gender and especially psycho-social late effects were inversely related to HRQoL. CONCLUSION: Childhood cancer survivors who were diagnosed more than 20 years ago have lower scores on the RAND 36, and have significantly more severe late effects than those diagnosed more recently. Patients with longer follow-up are more likely to become lost to follow-up. Time has come to establish new models of care for adult childhood cancer survivors, which are more flexible and appropriate to the needs of adult childhood cancer survivors.