scholarly journals Childhood Leukemia, Late Effects, and a Person-centric Model of Follow-up

2019 ◽  
Vol 111 (9) ◽  
pp. 880-881
Author(s):  
Miranda M Fidler-Benaoudia ◽  
Kevin C Oeffinger
Keyword(s):  
Late Effects ◽  
Childhood Leukemia

scholarly journals Self-reported late effects and long-term follow-up care among 1889 long-term Norwegian Childhood, Adolescent, and Young Adult Cancer Survivors (the NOR-CAYACS study)

2020 ◽  
Author(s):  
A. V. Mellblom ◽  
C. E. Kiserud ◽  
C. S. Rueegg ◽  
E. Ruud ◽  
J. H. Loge ◽  
...  
Keyword(s):  
Young Adult ◽  
Late Effects ◽  
Adolescent And Young Adult ◽  
Young Adult Cancer Survivors ◽  
Adult Cancer Survivors ◽  
Follow Up Care ◽  
Long Term Follow Up ◽  
Young Adult Cancer

Abstract Purpose The majority of childhood, adolescent, and young adult cancer survivors (CAYACS) are at risk of late effects but may not receive long-term follow-up care for these. Here, we investigated (1) self-reported late effects, (2) long-term follow-up care, and (3) factors associated with receiving follow-up care in a population-based sample of Norwegian long-term CAYACS. Methods Survivors were identified by the Cancer Registry of Norway. All > 5-year survivors diagnosed between 1985 and 2009 with childhood cancer (CCS, 0–18 years old, excluding CNS), breast cancer (BC, stages I–III), colorectal cancer (CRC), leukemias (LEUK), non-Hodgkin lymphoma (NHL), or malignant melanoma (MM) at age 19–39 years were mailed a questionnaire (NOR-CAYACS study). Descriptive statistics and logistic regression models were used to analyze occurrence of late effects, long-term follow-up care for these, and associated factors. Results Of 2104 responding survivors, 1889 were eligible for analyses. Of these, 68% were females, with a mean age of 43 years at survey, on average 17 years since diagnosis, and diagnosed with CCS (31%), BC (26%), CRC (8%), NHL (12%), LEUK (7%), and MM (16%). Overall, 61.5% reported the experience of at least one late effect, the most common being concentration/memory problems (28.1%) and fatigue (25.2%). Sixty-nine percent reported not having received long-term follow-up care focusing on late effects. Lower age at survey (p = 0.001), higher education (p = 0.012), and increasing number of late effects (p = < 0.001) were associated with increased likelihood of follow-up care in the multivariate model. Conclusions The majority of survivors reported at least one late effect, but not receiving specific follow-up care for these. This indicates a need for structured models of long-term follow-up to ensure adequate access to care.

scholarly journals EPID-16. INTEGRATION OF EHR AND CANCER REGISTRY DATA TO CONSTRUCT A PEDIATRIC NEURO-ONCOLOGY SURVIVORSHIP COHORT AND IMPROVE LONG-TERM FOLLOW-UP CARE

2020 ◽  
Vol 22 (Supplement_3) ◽  
pp. iii322-iii322
Author(s):  
David Noyd ◽  
Claire Howell ◽  
Kevin Oeffinger ◽  
Daniel Landi ◽  
Kristin Schroeder
Keyword(s):  
Cancer Registry ◽  
Late Effects ◽  
Care Delivery ◽  
Clinic Visit ◽  
Registry Data ◽  
Cancer Registry Data ◽  
Significant Difference ◽  
Race Ethnicity

Abstract BACKGROUND Pediatric neuro-oncology (PNO) survivors suffer long-term physical and neurocognitive morbidity. Comprehensive care addressing late effects of brain tumors and treatment in these patients is important. Clinical guidelines offer a framework for evaluating late effects, yet lack of extended follow-up is a significant barrier. The electronic health record (EHR) allows novel and impactful opportunities to construct, maintain, and leverage survivorship cohorts for health care delivery and as a platform for research. METHODS This survivorship cohort includes all PNO cases ≤18-years-old reported to the state-mandated cancer registry by our institution. Data mining of the EHR for exposures, demographic, and clinical data identified patients with lack of extended follow-up (&gt;1000 days since last visit). Explanatory variables included age, race/ethnicity, and language. Primary outcome included date of last clinic visit. RESULTS Between January 1, 2013 and December 31, 2018, there were 324 PNO patients reported to our institutional registry with ongoing analysis to identify the specific survivorship cohort. Thirty patients died with an overall mortality of 9.3%. Two-hundred-and-sixteen patients were seen in PNO clinic, of which 18.5%% (n=40) did not receive extended follow-up. Patients without extended follow-up were an average of 3.5 years older up (p&lt;0.01); however, there was no significant difference in preferred language (p=0.97) or race/ethnicity (p=0.57). CONCLUSION Integration of EHR and cancer registry data represents a feasible, timely, and novel approach to construct a PNO survivorship cohort to identify and re-engage patients without extended follow-up. Future applications include analysis of exposures and complications during therapy on late effects outcomes.

Late Effects of Treatment in Survivors of Childhood Acute Myeloid Leukemia

2000 ◽  
Vol 18 (18) ◽  
pp. 3273-3279 ◽  
Author(s):  
Wing Leung ◽  
Melissa M. Hudson ◽  
Donald K. Strickland ◽  
Sean Phipps ◽  
Deo K. Srivastava ◽  
...  
Keyword(s):  
Risk Factors ◽  
Acute Myeloid Leukemia ◽  
Late Effects ◽  
Myeloid Leukemia ◽  
Allogeneic Bone ◽  
Z Score ◽  
Late Sequelae ◽  
Childhood Acute Myeloid Leukemia ◽  
Acute Myeloid

PURPOSE: To investigate the incidence of and risk factors for late sequelae of treatment in patients who survived for more than 10 years after the diagnosis of childhood acute myeloid leukemia (AML). PATIENTS AND METHODS: Of 77 survivors (median follow-up duration, 16.7 years), 44 (group A) had received chemotherapy, 18 (group B) had received chemotherapy and cranial irradiation, and 15 (group C) had received chemotherapy, total-body irradiation, and allogeneic bone marrow transplantation. Late complications, tobacco use, and health insurance status were assessed. RESULTS: Growth abnormalities were found in 51% of survivors, neurocognitive abnormalities in 30%, transfusion-acquired hepatitis in 28%, endocrine abnormalities in 16%, cataracts in 12%, and cardiac abnormalities in 8%. Younger age at the time of diagnosis or initiation of radiation therapy, higher dose of radiation, and treatment in groups B and C were risk factors for the development of academic difficulties and greater decrease in height Z score. In addition, treatment in group C was a risk factor for a greater decrease in weight Z score and the development of growth-hormone deficiency, hypothyroidism, hypogonadism, infertility, and cataracts. The estimated cumulative risk of a second malignancy at 20 years after diagnosis was 1.8% (95% confidence interval, 0.3% to 11.8%). Twenty-two patients (29%) were smokers, and 11 (14%) had no medical insurance at the time of last follow-up. CONCLUSION: Late sequelae are common in long-term survivors of childhood AML. Our findings should be useful in defining areas for surveillance of and intervention for late sequelae and in assessing the risk of individual late effects on the basis of age and history of treatment.

Late Effects of Childhood Leukemia Therapy

2011 ◽  
Vol 6 (3) ◽  
pp. 195-205 ◽  
Author(s):  
Joy M. Fulbright ◽  
Sripriya Raman ◽  
Wendy S. McClellan ◽  
Keith J. August
Keyword(s):  
Late Effects ◽  
Childhood Leukemia

Quality of life in long-term survivors of CNS tumors of childhood and adolescence.

1991 ◽  
Vol 9 (4) ◽  
pp. 592-599 ◽  
Author(s):  
E N Mostow ◽  
J Byrne ◽  
R R Connelly ◽  
J J Mulvihill
Keyword(s):  
Quality Of Life ◽  
Late Effects ◽  
Pediatric Brain Tumor ◽  
Adverse Outcomes ◽  
Cns Tumors ◽  
Childhood And Adolescence ◽  
Long Term Survivors

Clinical reports of small numbers of pediatric brain tumor patients observed for brief periods suggest that long-term survivors continue to have major handicaps into adulthood. To quantify these late effects we interviewed 342 adults (or their proxies) who had CNS tumors diagnosed before the age of 20 between 1945 and 1974, survived at least 5 years, and reached 21 years of age. Survivors were 32 years old on average at follow-up. When compared with 479 matched siblings as controls. CNS tumor survivors were more likely to have died or to have become mentally incompetent sometime during the follow-up period. They were more likely to be at risk for such adverse outcomes as unemployment (odds ratio [OR], 10.8; 95% confidence interval [CI], 4.6 to 25.7], to have a health condition that affected their ability to work (OR, 5.9; CI, 3.7 to 9.4), to be unable to drive (OR, 28.8; CI, 6.9 to 119.9), or to describe their current health as poor (OR, 7.8; CI, 1.7 to 35.7). Unfavorable outcomes were more frequent in male survivors than in females, in those with supratentorial tumors compared with infratentorial ones, and in those who received radiation therapy. As clinicians consider improving therapies, they should anticipate late effects, such as those we observed, and attempt to target subgroups for interventions that may improve subsequent quality of life.

Long-Term Complications of Lymphoma and Its Treatment

2011 ◽  
Vol 29 (14) ◽  
pp. 1885-1892 ◽  
Author(s):  
Andrea K. Ng ◽  
Ann LaCasce ◽  
Lois B. Travis
Keyword(s):  
Late Effects ◽  
Hodgkin’S Lymphoma ◽  
Early Stage ◽  
Large Body ◽  
Hodgkin's Lymphoma ◽  
Long Term Effects ◽  
Early Stage Disease ◽  
Long Term Follow Up

As a result of therapeutic advances, there is a growing population of survivors of both Hodgkin's lymphoma (HL) and non-Hodgkin's lymphoma (NHL). A thorough understanding of the late effects of cancer and its treatment, including the risk of developing a second malignancy and non-neoplastic complications, most notably cardiac disease, is essential for the proper long-term follow-up care of these patients. For HL survivors cured in the past 5 decades, a large body of literature describes a range of long-term effects, many of which are related to extent of treatment. These studies form the basis for many of the follow-up recommendations developed for HL survivors. As HL therapy continues to evolve, however, with an emphasis toward treatment reduction, in particular for early-stage disease, it will be important to rigorously observe this new generation of patients long term to document and quantify late effects associated with modern treatments. Although data on late effects after NHL therapy have recently emerged, the formulation of structured follow-up plans for this heterogeneous group of survivors is challenging, given the highly variable natural history, treatments, and overall prognosis. However, the chemotherapy and radiation therapy approaches for some types of NHL are similar to that for HL; thus, some of the follow-up guidelines for patients with HL may also be transferrable to selected survivors of NHL. Additional work focused on treatment-related complications after NHL will facilitate the development of follow-up programs, as well as treatment refinements to minimize late effects in patients with various types of NHL.

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