scholarly journals Endocrine health conditions in adult survivors of childhood cancer: the need for specialized adult-focused follow-up clinics

2013 ◽  
Vol 168 (3) ◽  
pp. 465-472 ◽  
Author(s):  
E Brignardello ◽  
F Felicetti ◽  
A Castiglione ◽  
P Chiabotto ◽  
A Corrias ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Cancer Diagnosis ◽  
Late Effects ◽  
Cumulative Incidence ◽  
Endocrine Disease ◽  
Male Sex ◽  
Monitoring Protocols ◽  
Over Time

BackgroundSurvival rates among childhood cancer survivors (CCS) have enormously increased in the last 40 years. However, this improvement has been achieved at the expense of serious late effects that frequently involve the endocrine system.AimTo evaluate the cumulative incidence of endocrine diseases in a cohort of long-term CCS.Materials and methodsWe analyzed the clinical data of 310 adults, followed for a median time of 16.0 years after the first cancer diagnosis. The monitoring protocols applied to each patient were personalized on the basis of cancer diagnosis and previous treatments, according to the Children's Oncology Group guidelines.ResultsThe cumulative incidence of endocrine late effects steadily increased over time. At the last follow-up visit available, 48.46% of females and 62.78% of males were affected by at least one endocrine disease. The most common disorders were gonadal dysfunction, primary hypothyroidism, and GH deficiency (GHD). The main risk factors for endocrine disease were male sex (hazard ratio (HR)=1.45, 95% confidence interval (95% CI) 1.05–1.99), radiotherapy (HR=1.91, 95% CI 1.28–2.84), hematopoietic stem cells transplantation (HR=3.11, 95% CI 2.23–4.34), and older age at cancer diagnosis (HR=1.89, 95% CI 1.25–2.85). Male sex was associated with a higher risk of gonadal disorders, whereas radiotherapy specifically increased the risk of GHD and thyroid dysfunction.ConclusionsEndocrine disorders among CCS have a high prevalence and increase over time. Thus, endocrinologists need to cope with an increasing demand for health care in a field that is still little developed and that, in perspective, could also be extended to some selected types of adult cancer survivors.

scholarly journals Comprehensive clinical follow-up of late effects in childhood cancer survivors shows the need for early and well-timed intervention

2009 ◽  
Vol 20 (7) ◽  
pp. 1170-1177 ◽  
Author(s):  
J.W. Han ◽  
S.Y. Kwon ◽  
S.C. Won ◽  
Y.J. Shin ◽  
J.H. Ko ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Late Effects ◽  
Childhood Cancer Survivors

scholarly journals Increased risk of cardiac ischaemia in a pan-European cohort of 36 205 childhood cancer survivors: a PanCareSurFup study

Heart ◽  
2020 ◽  
Vol 107 (1) ◽  
pp. 33-40 ◽  
Author(s):  
Elizabeth Arnoldina Maria Feijen ◽  
Elvira C van Dalen ◽  
Heleen J H van der Pal ◽  
Raoul C Reulen ◽  
David L Winter ◽  
...  
Keyword(s):  
Risk Factors ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Cumulative Incidence ◽  
Cox Regression ◽  
Childhood Cancer Survivors ◽  
Cardiac Ischaemia ◽  
Number Of Patients ◽  
Increased Risk

ObjectiveIn this report, we determine the cumulative incidence of symptomatic cardiac ischaemia and its risk factors among European 5-year childhood cancer survivors (CCS) participating in the PanCareSurFup study.MethodsEight data providers (France, Hungary, Italy (two cohorts), the Netherlands, Slovenia, Switzerland and the UK) participating in PanCareSurFup ascertained and validated symptomatic cardiac events among their 36 205 eligible CCS. Data on symptomatic cardiac ischaemia were graded according to the Criteria for Adverse Events V.3.0 (grade 3–5). We calculated cumulative incidences, both overall and for different subgroups based on treatment and malignancy, and used multivariable Cox regression to analyse risk factors.ResultsOverall, 302 out of the 36 205 CCS developed symptomatic cardiac ischaemia during follow-up (median follow-up time after primary cancer diagnosis: 23.0 years). The cumulative incidence by age 60 was 5.4% (95% CI 4.6% to 6.2%). Men (7.1% (95% CI 5.8 to 8.4)) had higher rates than women (3.4% (95% CI 2.4 to 4.4)) (p<0.0001). Of importance is that a significant number of patients (41/302) were affected as teens or young adults (14–30 years). Treatment with radiotherapy/chemotherapy conferred twofold risk (95% CI 1.5 to 3.0) and cases in these patients appeared earlier than in CCS without treatment/surgery only (15% vs 3% prior to age 30 years, respectively (p=0.04)).ConclusionsIn this very large European childhood cancer cohort, we found that by age 60 years, 1 in 18 CCS will develop a severe, life-threatening or fatal cardiac ischaemia, especially in lymphoma survivors and CCS treated with radiotherapy and chemotherapy increases the risk significantly.

Impact of using volumetric dosimetry to screen childhood cancer survivors for radiation-related late effects.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 12066-12066
Author(s):  
Sally Cohen-Cutler ◽  
Cameron Kaplan ◽  
Arthur Olch ◽  
Kenneth Wong ◽  
Jemily Malvar ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Late Effects ◽  
Pure Tone ◽  
Childhood Cancer Survivors ◽  
Cancer Type ◽  
Screening Practices ◽  
Long Term Follow Up

12066 Background: Late effects screening guidelines for survivors of childhood cancer treated with radiation therapy currently use irradiated regions (IR) rather than volumetric dosimetry (VD), which more precisely identifies organs-at-risk (OAR). We recently showed that VD reduced mean number of recommended screening diagnostic imaging studies and procedures by 37.0% per patient (p<0.001).1 Here we have incorporated chemotherapy and refined volumetric dosimetry dose thresholds. Methods: This was a cross-sectional cohort study of patients (n=132) treated for cancer using computerized tomography-planned irradiation at Children’s Hospital Los Angeles from 2000-2016. For each patient, both VD and IR methods were used to determine radiation exposure to the cochlea, heart, lung, breast, and colon. Dose thresholds for VD were based on those supplied in the Children’s Oncology Group (COG) Long-Term Follow-Up Guidelines. Relevant chemotherapy exposures were recorded. Under each method, COG Long-Term Follow-Up Guidelines were applied to determine potential chemotherapy- and radiation-related late effects and their correlative screening practices (complete audiologic evaluation, pure tone audiometry, mammogram, breast MRI, echocardiogram, pulmonary functions test, and/or colonoscopy). Identified OAR were compared using Exact McNemar’s test. Total numbers of screening practices were computed using VD and IR and compared. Results: Median age at end of treatment was 10.6 years (range 1.4-20.4). The most frequent cancer type was brain tumor (45%), followed by bone and soft tissue tumor (39%) and leukemia/lymphoma (16%). Head/brain was the most commonly irradiated region (61%), followed by abdomen (22%). Anthracyclines were received by 25% of patients at < 250 mg/m2 and by 16% at ≥ 250 mg/m2. With use of VD, fewer patients were flagged for screening for each organ of interest: cochlea (-21.3%, p<0.001), heart (-22.5%, p<0.001), lung (-13.8%, p=0.219), breast (-25%, p=0.625), colon (-51.9%, p<0.001). Over the lifetime of this cohort, use of VD resulted in recommendations for 1,333 fewer pure tone audiometric tests (-21.5%), 9 fewer complete audiologic evaluations (-16.1%), 4 fewer pulmonary function tests (-13.8%), 112 fewer mammograms (-25.0%) and breast MRIs (-25.0%), 349 fewer echocardiograms (-16.1%), and 275 fewer colonoscopies (-51.9%). Conclusions: Use of VD rather than IR significantly reduces guideline-based screening for radiation-related late effects in long-term childhood cancer survivors. This work forms the basis for a comparative cost-effectiveness analysis of these two approaches. (1) Cohen-Cutler et al, Cancer Medicine, 2020.

scholarly journals Identifying Priorities for Harmonizing Guidelines for the Long-Term Surveillance of Childhood Cancer Survivors in the Chinese Children Cancer Group (CCCG)

2021 ◽  
pp. 261-276
Author(s):  
Yin Ting Cheung ◽  
Hui Zhang ◽  
Jiaoyang Cai ◽  
Lung Wai Phillip Au-Doung ◽  
Lok Sum Yang ◽  
...  
Keyword(s):  
Focus Group ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Late Effects ◽  
Childhood Cancer Survivors ◽  
Delphi Survey ◽  
Cancer Group ◽  
Follow Up Care ◽  
Survivors Of Childhood Cancer

PURPOSE Survivors of childhood cancer often experience treatment-related chronic health conditions. Given its vast population, China shares a large proportion of the global childhood cancer burden. Yet, screening and treatment of late effects in survivors of childhood cancer remain underaddressed in most regions of China. This study aimed to identify high-priority late effects for harmonizing screening guidelines within the Chinese Children's Cancer Group (CCCG), as well as barriers and enablers of the implementation of surveillance recommendations in local practice. METHODS To establish clinical consensus, 12 expert panelists who represent major institutions within the CCCG completed a Delphi survey and participated in a focus group discussion. The survey solicited ratings of the prevalence, severity, and priority for screening of 45 late effects. Major themes identified from the focus group were analyzed using thematic analysis. RESULTS The Delphi survey identified eight high-priority late effects for harmonization within CCCG: osteonecrosis, osteoporosis, left ventricular dysfunction, secondary brain tumors, treatment-related myeloid leukemia, gonadal dysfunction, growth hormone deficiency, and neurocognitive deficits. The common barriers to implementing survivorship programs include lack of support and resources for clinicians to provide follow-up care. Patients were also concerned about privacy issues and lacked awareness of late effects. Many institutions also lacked rehabilitation expertise and referral pathways. CONCLUSION By identifying obstacles related to the professional setting, patient behavior, and organization of care, our study identified resources and a framework for establishing collaborative strategies to facilitate follow-up care of childhood cancer survivors in China.

Change in patient-reported outomes over time from breast cancer diagnosis.

2011 ◽  
Vol 29 (27_suppl) ◽  
pp. 210-210
Author(s):  
C. E. Hill-Kayser ◽  
C. Vachani ◽  
M. K. Hampshire ◽  
G. A. Di Lullo ◽  
J. M. Metz
Keyword(s):  
Breast Cancer ◽  
Cancer Survivors ◽  
Cancer Diagnosis ◽  
Late Effects ◽  
Breast Cancer Survivors ◽  
Breast Cancer Diagnosis ◽  
Survivorship Care ◽  
Convenience Sample ◽  
Patient Reported ◽  
Over Time

210 Background: Breast cancer survivors may be at risk for significant late effects after treatment. Understanding the patterns of change over time of patient reported outcomes (PRO) is often very challenging. Methods: Patient-reported data was gathered via a convenience sample frame from breast cancer survivors utilizing a publically available, free, Internet-based tool for creation of survivorship care plans. Available at www.livestrongcareplan.com and through the OncoLink website, the tool allows survivors to enter data regarding diagnosis, demographics, treatments received, and late effects experienced, and provides them with customized guidelines for future care. All data has been maintained anonymously with IRB approval. Results: 1,145 breast cancer survivors were queried with regard to PRO. Median age at diagnosis (dx) was 49 yrs, and median current age 52 yrs. Of users, 98% reported having had surgery; of these 56% underwent mastectomy and 49% lumpectomy (5% both). Similarly, 59% underwent sentinel LN biopsy, and 47% axilary dissection. Of the same cohort, 88% received chemotherapy and/or hormonal treatment, and 70% radiation therapy. The median time from dx until use of the care plan tool was 2 years (range 0-33 years). Late effects reported by survivors ≤ 2 and > 2 years from diagnosis are shown (see table). Overall, survivors ≤ 2 years from dx were more likely to note changes in skin color or texture; those > 2 years from diagnosis were more likely to note osteopenia, lymphedema, and sexual changes. Patient reported cognitive changes, arm pain/numbness/tingling, and loss of shoulder flexibility did not differ between the two groups. Conclusions: This anonymous tool uses a convenience sample frame to gather PRO after breast cancer diagnosis/ treatment. PRO varied significantly with time since dx, with more late effects reported > 2 years from dx. This information may be of use during patient counseling and survivorship care delivery. [Table: see text]

Personalized Massive Open Online Course for Childhood Cancer Survivors: Behind the Scenes

2021 ◽  
Vol 12 (02) ◽  
pp. 237-244
Author(s):  
Claire Berger ◽  
Léonie Casagranda ◽  
Hélène Sudour-Bonnange ◽  
Catherine Massoubre ◽  
Jean-Hugues Dalle ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Late Effects ◽  
Online Courses ◽  
Childhood Cancer Survivors ◽  
Massive Open Online ◽  
Follow Up Care ◽  
Long Term Follow Up

Abstract Background Today, in France, it is estimated that 1 in 850 people aged between 20 and 45 years has been treated for childhood cancer, which equals 40,000 to 50,000 people. As late effects of the cancer and its treatment affect a large number of childhood cancer survivors (CCS) and only 30% of them benefit from an efficient long-term follow-up care for prevention, early detection, and treatment of late effects, health education of CCS represents a challenge of public health. Objectives Massive open online courses (MOOCs) are a recent innovative addition to the online learning landscape. This entertaining and practical tool could easily allow a deployment at a national level and make reliable information available for all the CCS in the country, wherever they live. Methods The MOOC team brings together a large range of specialists involved in the long-term follow-up care, but also associations of CCS, video producers, a communication consultant, a pedagogical designer, a cartoonist and a musician. We have designed three modules addressing transversal issues (lifestyle, importance of psychological support, risks of fertility problems) and eight modules covering organ-specific problems. Detailed data on childhood cancer treatments received were used to allocate the specific modules to each participant. Results This paper presents the design of the MOOC entitled “Childhood Cancer, Living Well, After,” and how its feasibility and its impact on CCS knowledge will be measured. The MOOC about long-term follow-up after childhood cancer, divided into 11 modules, involved 130 participants in its process, and resulted in a 170-minute film. The feasibility study included 98 CCS (31 males vs. 67 females; p < 0.0001). Conclusion Such personalized, free, and online courses with an online forum and a possible psychologist consultation based on unique characteristics and needs of each survivor population could improve adherence to long-term follow-up without alarming them unnecessarily.

Adolescent and young adult (AYA) survivors of childhood cancers: A challenge in after completion of therapy (ACT) clinic in resource-constrained country.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 19-19
Author(s):  
Purna Arun Kurkure ◽  
Saroj Prasad Panda ◽  
Maya Prasad ◽  
Savita Goswami
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Support Groups ◽  
Late Effects ◽  
Childhood Cancer Survivors ◽  
Adolescent And Young Adult ◽  
Risk Category ◽  
Childhood Cancers ◽  
Tata Memorial Hospital

19 Background: To assess the evaluation of late effects in childhood cancer survivors who have transitioned to AYA age group on longitudinal follow up in After Completion of Therapy (ACT) clinic at Tata Memorial Hospital, Mumbai. Methods: ACT clinic database was analyzed for childhood cancer survivors who have attained age 15-30 yrs at last follow up in the clinic for demographics, grade of late effects &pattern of follow up. Results: Of 1720 childhood cancer Survivors ( > , 2 yrs off therapy & disease free) registered in ACT clinic from Feb 91-Feb15, 976(56.7%) are in AYA group, M.F = 707/269 (2.6:1), Hematolymphoid : Solid tumours = 543/433 (1.3:1), Mumbai based: Non Mumbai = 306/670 (1:2.2).Median age at diagnosis 8 yrs, current median age 20 yrs, median duration of ACT clinic follow up is 6 yrs. At registration 448 (47%) had no late effects. 230(24%) had grade I, 81(8.4%) grade II 195 (20%) had grade III. Only 9(1%) had grade IV late effects which increased to 53 (6%) at last follow up due to recurrence & second neoplasia. Only 29(3%) were at low risk of developing potential late effects. 466(48.5%) were in intermediate risk & 48.5% (466) fell in high risk category requiring at least annual follow up. 72% of survivors registered in ACT clinic from 1991-2001 had stopped follow up as compared to 36% registered in subsequent decade (p < 0.01). Conclusions: AYA survivors of childhood cancers form major (56.7%) group in Long Term Follow up clinic. The increasing incidence of life threatening late effects on longitudinal follow up combined with statistically significant increasing trend of stopping follow up over period of time since ACT registration is alarming & calls for innovative approaches for maintaining good follow up through survivor centric approaches such as use of IT based communication technologies & formation of childhood cancer survivors support groups like Ugam.

scholarly journals Second Neoplasms in Survivors of Childhood Cancer: Findings From the Childhood Cancer Survivor Study Cohort

2009 ◽  
Vol 27 (14) ◽  
pp. 2356-2362 ◽  
Author(s):  
Anna T. Meadows ◽  
Debra L. Friedman ◽  
Joseph P. Neglia ◽  
Ann C. Mertens ◽  
Sarah S. Donaldson ◽  
...  
Keyword(s):  
Risk Factors ◽  
Skin Cancer ◽  
Childhood Cancer ◽  
Cancer Survivor ◽  
Cancer Diagnosis ◽  
Cumulative Incidence ◽  
Nonmelanoma Skin Cancer ◽  
Related Risk ◽  
Childhood Cancer Survivor Study

Purpose To review the reports of subsequent neoplasms (SNs) in the Childhood Cancer Survivor Study (CCSS) cohort that were made through January 1, 2006, and published before July 31, 2008, and to discuss the host-, disease-, and therapy-related risk factors associated with SNs. Patients and Methods SNs were ascertained by survivor self-reports and subsequently confirmed by pathology findings or medical record review. Cumulative incidence of SNs and standardized incidence ratios for second malignant neoplasms (SMNs) were calculated. The impact of host-, disease-, and therapy-related risk factors was evaluated by Poisson regression. Results Among 14,358 cohort members, 730 reported 802 SMNs (excluding nonmelanoma skin cancers). This represents a 2.3-fold increase in the number of SMNs over that reported in the first comprehensive analysis of SMNs in the CCSS cohort, which was done 7 years ago. In addition, 66 cases of meningioma and 1,007 cases of nonmelanoma skin cancer were diagnosed. The 30-year cumulative incidence of SMNs was 9.3% and that of nonmelanoma skin cancer was 6.9%. Risk of SNs remains elevated for more than 20 years of follow-up for all primary childhood cancer diagnoses. In multivariate analyses, risks differ by SN subtype, but include radiotherapy, age at diagnosis, sex, family history of cancer, and primary childhood cancer diagnosis. Female survivors whose primary childhood cancer diagnosis was Hodgkin's lymphoma or sarcoma and who received radiotherapy are at particularly increased risk. Analyses of risk associated with radiotherapy demonstrated different dose-response curves for specific SNs. Conclusion Childhood cancer survivors are at a substantial and increasing risk for SNs, including nonmelanoma skin cancer and meningiomas. Health care professionals should understand the magnitude of these risks to provide individuals with appropriate counseling and follow-up.

scholarly journals Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational Study (Preprint)

2020 ◽  
Author(s):  
Sibylle Denzler ◽  
Maria Otth ◽  
Katrin Scheinemann
Keyword(s):  
Observational Study ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Late Effects ◽  
Childhood Cancer Survivors ◽  
Multicenter Observational Study ◽  
Follow Up Care ◽  
Prospective Multicenter Observational Study

BACKGROUND Most children and adolescents diagnosed with cancer become long-term survivors. For most of them, regular follow-up examinations to detect and treat late effects are necessary, especially in adulthood. The transition from pediatric to adult-focused follow-up care is a critical moment for childhood cancer survivors (CCSs); a substantial proportion of CCSs are lost to follow-up in this transition process and do not attend follow-up care in adulthood. This can have serious effects on survivors’ health if late effects are not discovered in a timely fashion. OBJECTIVE In this study, we primarily assess the current follow-up situation, related needs, and knowledge of adolescent and young adult CCSs who have transitioned from pediatric to adult-focused follow-up care. As secondary objectives, we evaluate transition readiness, identify facilitating factors of transition and adherence to long-term follow-up (LTFU) care, and compare three different transition models. METHODS The Aftercare of Childhood Cancer Survivors (ACCS) Switzerland study is a prospective, multicenter, observational study that was approved by the ethics committee in February 2019. We are recruiting CCSs from three pediatric oncology centers and using questionnaires to answer the study questions. RESULTS To date, we have recruited 58 participants. The study is ongoing, and recruitment of participants will continue until January 2021. CONCLUSIONS The ACCS study will provide information on CCSs’ preferences and expectations for follow-up care and their transition into the adult setting. The results will help improve the LTFU care and cancer knowledge of CCSs and subsequently enhance adherence to follow-up care and reduce loss to follow-up in adulthood. CLINICALTRIAL ClinicalTrials.gov NCT04284189; https://clinicaltrials.gov/ct2/show/NCT04284189?id=NCT04284189 INTERNATIONAL REGISTERED REPORT PRR1-10.2196/18898

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