Psychosocial Late Effects in Pediatric Cancer Survivors: A Report From the Children's Oncology Group

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Abstract

<div class="section"> <a class="named-anchor" id="S1">  </a> <h5 class="section-title" id="d8757309e184">Background</h5> <p id="P1">This review was conducted to update the Children’s Oncology Group (COG) Long-Term Follow-Up Guidelines (COG-LTFU Guidelines; version 4.0) regarding screening for psychosocial late effects of pediatric cancer. </p> </div><div class="section"> <a class="named-anchor" id="S2">  </a> <h5 class="section-title" id="d8757309e189">Procedure</h5> <p id="P2">Articles published between August 2009 and January 2011 that addressed psychosocial late effects of long-term survivors of pediatric cancer ( <i>n</i> = 35) were reviewed by a multidisciplinary team of COG late effect experts. </p> </div><div class="section"> <a class="named-anchor" id="S3">  </a> <h5 class="section-title" id="d8757309e197">Results</h5> <p id="P3">The majority of studies in this time period indicate that survivors experience few psychosocial problems in long-term survivorship. A critical subset, however, are at increased risk for psychosocial late effects secondary to treatment. Highlighted findings from this review include increased rates of suicidal ideation (SI), and health beliefs as robust predictors of SI, anxiety, and global distress. Survivors’ health beliefs were associated with their perceptions of physical limitations, overall late effects, and cancer-related pain. While many survivorship studies continue to specify risk factors for anxiety and post-traumatic stress symptoms (PTSS)/disorder (PTSD), others outcomes (e.g. developmental, interpersonal, and familial factors) appear to be emerging in importance. </p> </div><div class="section"> <a class="named-anchor" id="S4">  </a> <h5 class="section-title" id="d8757309e202">Conclusions</h5> <p id="P4">Although the majority of childhood cancer survivors do not experience psychosocial problems, a subset will. The recent research findings have been included in the new COG-LTFU guidelines that will assist in the targeted assessment and treatment of survivors’ psychosocial health. </p> </div>

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Most cited references 42

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Development of risk-based guidelines for pediatric cancer survivors: the Children's Oncology Group Long-Term Follow-Up Guidelines from the Children's Oncology Group Late Effects Committee and Nursing Discipline.

Leslie Robison, Katherine Friedman, J P Neglia … (2004)

The Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers are risk-based, exposure-related clinical practice guidelines intended to promote earlier detection of and intervention for complications that may potentially arise as a result of treatment for pediatric malignancies. Developed through the collaborative efforts of the Children's Oncology Group Late Effects Committee, Nursing Discipline, and Patient Advocacy Committee, these guidelines represent a statement of consensus from a multidisciplinary panel of experts in the late effects of pediatric cancer treatment. The guidelines are both evidence-based (utilizing established associations between therapeutic exposures and late effects to identify high-risk categories) and grounded in the collective clinical experience of experts (matching the magnitude of risk with the intensity of screening recommendations). They are intended for use beginning 2 or more years following the completion of cancer therapy; however, they are not intended to provide guidance for follow-up of the survivor's primary disease. A complementary set of patient education materials ("Health Links") was developed to enhance follow-up care and broaden the application of the guidelines. The information provided in these guidelines is important for health care providers in the fields of pediatrics, oncology, internal medicine, family practice, and gynecology, as well as subspecialists in many fields. Implementation of these guidelines is intended to increase awareness of potential late effects and to standardize and enhance follow-up care provided to survivors of pediatric cancer throughout the lifespan. The Guidelines, and related Health Links, can be downloaded in their entirety at www.survivorshipguidelines.org.

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Medical care in long-term survivors of childhood cancer: a report from the childhood cancer survivor study.

Paul C Nathan, Mark L Greenberg, Kirsten K Ness … (2008)

To evaluate whether childhood cancer survivors receive regular medical care focused on the specific morbidities that can arise from their therapy. We conducted a cross-sectional survey of health care use in 8,522 participants in the Childhood Cancer Survivor Study, a multi-institutional cohort of childhood cancer survivors. We assessed medical visits in the preceding 2 years, whether these visits were related to the prior cancer, whether survivors received advice about how to reduce their long-term risks, and whether screening tests were discussed or ordered. Completion of echocardiograms and mammograms were assessed in patients at high risk for cardiomyopathy or breast cancer. We examined the relationship between demographics, treatment, health status, chronic medical conditions, and health care use. Median age at cancer diagnosis was 6.8 years (range, 0 to 20.9 years) and at interview was 31.4 years (range, 17.5 to 54.1 years). Although 88.8% of survivors reported receiving some form of medical care, only 31.5% reported care that focused on their prior cancer (survivor-focused care), and 17.8% reported survivor-focused care that included advice about risk reduction or discussion or ordering of screening tests. Among survivors who received medical care, those who were black, older at interview, or uninsured were less likely to have received risk-based, survivor-focused care. Among patients at increased risk for cardiomyopathy or breast cancer, 511 (28.2%) of 1,810 and 169 (40.8%) of 414 had undergone a recommended echocardiogram or mammogram, respectively. Despite a significant risk of late effects after cancer therapy, the majority of childhood cancer survivors do not receive recommended risk-based care.

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Psychological outcomes in long-term survivors of childhood brain cancer: a report from the childhood cancer survivor study.

B J Zebrack, Leslie Robison, John Whitton … (2004)

To evaluate and compare psychological outcomes in long-term survivors of pediatric brain cancer and siblings of childhood cancer survivors, and to identify significant correlates of psychological distress. One thousand one hundred one adult survivors of childhood brain cancer and 2,817 siblings completed a long-term follow-up questionnaire allowing assessment of symptoms associated with depression, somatization, and anxiety, as well as demographic, health, and medical information. A large majority of siblings and survivors report few, if any, symptoms of psychological distress. The prevalence of distress approximating clinically significant levels for both survivors (11%) and siblings (5%) reflects rates found in the general population. Yet when accounting for significant sociodemographic, socioeconomic, and health-status variables, survivors of childhood brain cancer, in the aggregate, appear to report significantly higher global distress and depression scores than do siblings. As in the general population, higher levels of distress among survivors and siblings were associated with female sex, low household income, lower educational attainment, being unmarried, not being employed in the past 12 months, and poor physical health status. No diagnostic or treatment-related variables were directly and significantly associated with increases in distress symptoms for survivors of childhood brain cancer. Cancer treatment does not appear to contribute directly to increased psychological distress. Instead, distress appears to be associated with diminished social functioning that may be related to cancer type or treatment. Implementation and evaluation of supportive interventions that enhance survivors' social and vocational skills should be considered.

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Author and article information

Journal

Title: Pediatric Blood & Cancer

Abbreviated Title: Pediatr Blood Cancer

Publisher: Wiley

ISSN: 15455009

Publication date Created: February 2016

Publication date (Print): February 2016

Publication date (Electronic): October 21 2015

Volume: 63

Issue: 2

Pages: 337-343

Affiliations

[1 ]Children's Hospital of Richmond; Richmond Virginia

[2 ]Department of Pediatrics; Virginia Commonwealth University; Richmond Virginia

[3 ]Cardinal Glennon Children's Medical Center; St. Louis Missouri

[4 ]Department of Epidemiology & Cancer Control and Psychology, St. Jude Children's Research Hospital, Memphis, Tennessee

[5 ]Department of Psychology; St. Jude Children's Research Hospital; Memphis Tennessee

Article

DOI: 10.1002/pbc.25773

PMC ID: 4715481

PubMed ID: 26488337

SO-VID: 6ad5c788-4405-4ebb-be6f-44397c0b6665

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http://doi.wiley.com/10.1002/tdm_license_1.1

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Psychosocial Late Effects in Pediatric Cancer Survivors: A Report From the Children's Oncology Group : Psychosocial Late Effects

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