Survivor care for pediatric cancer survivors

Record, Elizabeth; Meacham, Lillian R.

doi:10.1097/cco.0000000000000195

Cited by 20 publications

(25 citation statements)

References 45 publications

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“…The Children's Oncology Group (COG) has outlined LTFU guidelines that provide recommendations for regular surveillance and care for those 2+ years from end of treatment based on specific treatment exposures . The COG LTFU guidelines are updated periodically using systematic reviews of published scientific literature.…”

Section: Introductionmentioning

confidence: 99%

Psychosocial Follow‐Up in Survivorship as a Standard of Care in Pediatric Oncology

Lown

Phillips

Schwartz

et al. 2015

Pediatric Blood & Cancer

110

113

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Childhood cancer survivors (CCS) have a high risk of medical late effects following cancer therapy. Psychosocial late effects are less often recognized. Many CCS do not receive long-term follow-up (LTFU) care, and those who do are rarely screened for psychosocial late effects. An interdisciplinary team conducted a systematic review of qualitative and quantitative studies to assess social, educational, vocational, psychological, and behavioral outcomes along with factors related to receipt of LTFU care. We propose that psychosocial screening be considered a standard of care in long-term follow-up care and that education be provided to promote the use LTFU care starting early in the treatment trajectory.

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Section: Introductionmentioning

confidence: 99%

Psychosocial Follow‐Up in Survivorship as a Standard of Care in Pediatric Oncology

Lown

Phillips

Schwartz

et al. 2015

Pediatric Blood & Cancer

110

113

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“…R esearch with biospecimens from children and adolescents serves two primary purposes: to understand pediatric‐specific diseases, such as many childhood cancers, which have no adult equivalent, and to understand the long‐term effects of the interaction between genetic and environmental exposures on adult disease and wellness 13 . For example, adult survivors of pediatric cancer experience a high rate of secondary malignancies leading to increased morbidity 14 . Longitudinal research with biospecimens might identify predictors of outcomes among adult survivors, which, in turn, could lead to more precise and effective administration of chemotherapy protocols in pediatric patients.…”

Section: Research With Biospecimens From Pediatric Participantsmentioning

confidence: 99%

Anticipatory Waivers of Consent for Pediatric Biobanking

Hartsock

Schwartz

Waltz

et al. 2019

Ethics & Human Research

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As pediatric biobank research grows, additional guidance will be needed about whether researchers should always obtain consent from participants when they reach the legal age of majority. Biobanks struggle with a range of practical and ethical issues related to this question. We propose a framework for the use of anticipatory waivers of consent that is empirically rooted in research that shows that children and adolescents are often developmentally capable of meaningful deliberation about the risks and benefits of participation in research. Accordingly, bright‐line legal concepts of majority or competency do not accurately capture the emerging capacity for autonomous decision‐making of many pediatric research participants and unnecessarily complicate the issues about contacting participants at the age of majority to obtain consent for the continued or first use of their biospecimens that were obtained during childhood. We believe the proposed framework provides an ethically sound balance between the concern for potential exploitation of vulnerable populations, the impetus for the federal regulations governing research with children, and the need to conduct valuable research in the age of genomic medicine.

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“…Furthermore, AYA patients are more prone to toxicities from these nonspecific agents because they often require treatment intensification due to the biology of their disease and additionally experience more side effects with the same therapy than younger children 52. Moreover, AYA survivors of STS experience significant long-term side effects, including cardiotoxicity, infertility, and secondary malignancies 53–56. Therefore, new therapies are urgently needed to improve short-term as well as long-term outcomes of AYA patients with STS.…”

Section: Definition Of Targeted Therapymentioning

confidence: 99%

Targeted therapy for soft tissue sarcomas in adolescents and young adults

Steppan

Pratilas

Loeb

2017

AHMT

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Soft tissue sarcomas (STSs) are a heterogeneous group of tumors originating from the mesenchyme. Even though they affect individuals in all age groups, the prevalence of subtypes of STSs changes significantly from childhood through adolescence into adulthood. The mainstay of therapy is surgery, with or without the addition of chemotherapy and/or radiation therapy. These treatment modalities are associated, in many cases, with significant morbidity and, given the heterogeneity of tumor histologies encompassed by the term “STS”, have not uniformly improved outcomes. Moreover, some subgroups of STSs appear to be more, and others less, responsive to conventional chemotherapy agents. Over the last two decades, our understanding of the biology of STSs is slowly increasing, allowing for the development of more targeted therapies. We review the new treatment modalities that have been tested on patients with STSs, with a special focus on adolescents and young adults, a group of patients that is often underrepresented in clinical trials and has not received the dedicated attention it deserves, given the significant differences in biology and treatment response in comparison to children and adults.

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Survivor care for pediatric cancer survivors

Abstract: It is becoming clear that there is no age after which the occurrence of late effects plateaus and surveillance can be reduced. Survivors should be empowered to advocate for their survivor care and options for follow-up should be tailored to their needs.

Cited by 20 publications

References 45 publications

Psychosocial Follow‐Up in Survivorship as a Standard of Care in Pediatric Oncology

Psychosocial Follow‐Up in Survivorship as a Standard of Care in Pediatric Oncology

Anticipatory Waivers of Consent for Pediatric Biobanking

Targeted therapy for soft tissue sarcomas in adolescents and young adults

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