Childhood cancer predisposition syndromes-A concise review and recommendations by the Cancer Predisposition Working Group of the Society for Pediatric Oncology and Hematology

AbstractIncreasing use of genomic sequencing enables standardized screening of all childhood cancer predisposition syndromes (CPS) in children with cancer. Gene panels currently used often include adult-onset CPS genes and genes without substantial evidence linking them to cancer predisposition. We have developed criteria to select genes relevant for childhood-onset CPS and assembled a gene panel for use in children with cancer. We applied our criteria to 381 candidate genes, which were selected through two in-house panels (n = 338), a literature search (n = 39), and by assessing two Genomics England’s PanelApp panels (n = 4). We developed evaluation criteria that determined a gene’s eligibility for inclusion on a childhood-onset CPS gene panel. These criteria assessed (1) relevance in childhood cancer by a minimum of five childhood cancer patients reported carrying a pathogenic variant in the gene and (2) evidence supporting a causal relation between variants in this gene and cancer development. 138 genes fulfilled the criteria. In this study we have developed criteria to compile a childhood cancer predisposition gene panel which might ultimately be used in a clinical setting, regardless of the specific type of childhood cancer. This panel will be evaluated in a prospective study. The panel is available on (pediatric-cancer-predisposition-genepanel.nl) and will be regularly updated.

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Does the guided online cognitive behavioral therapy for insomnia “i-Sleep youth” improve sleep of adolescents and young adults with insomnia after childhood cancer? (MICADO-study): study protocol of a randomized controlled trial

Trials ◽

10.1186/s13063-021-05263-z ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

Shosha H. M. Peersmann ◽

Annemieke van Straten ◽

Gertjan J. L. Kaspers ◽

Adriana Thano ◽

Esther van den Bergh ◽

...

Keyword(s):

Quality Of Life ◽

Young Adults ◽

Cognitive Behavioral Therapy ◽

Childhood Cancer ◽

Pediatric Oncology ◽

Behavioral Therapy ◽

Cognitive Behavioral ◽

Adolescents And Young Adults ◽

Randomized Controlled

Abstract Background Adolescents and young adults who had childhood cancer are at increased risk for insomnia, due to being critically ill during an important phase of their life for the development of good sleep habits. Insomnia is disabling and prevalent after childhood cancer (26–29%) and negatively impacts quality of life, fatigue, pain, and general functioning and is often associated with other (mental) health problems. Insomnia and a history of childhood cancer both increase the risk of adverse health outcomes, posing a double burden for adolescents who had childhood cancer. The first-line treatment for insomnia is cognitive behavioral therapy for insomnia (CBT-I). However, access to this type of care is often limited. The guided online CBT-I treatment “i-Sleep” has been developed to facilitate access via online care. i-Sleep is shown effective in adult (breast cancer) patients, but it is unknown if iCBT-I is effective in pediatric oncology. Methods/design We developed a youth version of i-Sleep. Our aim is to evaluate its effectiveness in a national randomized-controlled clinical trial comparing iCBT-I to a waiting-list control condition at 3 and 6 months (n = 70). The intervention group will be also assessed at 12 months to see whether the post-test effects are maintained. Adolescents and young adults aged 12–30 years with insomnia, diagnosed with (childhood) cancer, currently at least 6 months since their last cancer treatment will be eligible. Outcomes include sleep efficiency (actigraphic), insomnia severity (self-report), sleep and circadian activity rhythm parameters, fatigue, health-related quality of life, perceived cognitive functioning, chronic distress, depressive and anxiety symptoms, and intervention acceptability. Discussion Insomnia is prevalent in the pediatric oncology population posing a double health burden for adolescents and young adults who had childhood cancer. If guided iCBT-I is effective, guidelines for insomnia can be installed to treat insomnia and potentially improve quality of life and the health of adolescents and young adults who had childhood cancer. Trial registration NL7220 (NTR7419; Netherlands Trial register). Registered on 2 August 2018

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Enduring Cell Lines: Parents’ Experiences of Postmortem Tumor Banking in Childhood Cancer

Journal of Family Nursing ◽

10.1177/10748407211001431 ◽

2021 ◽

pp. 107484072110014

Author(s):

Nancy J. Moules ◽

Catherine M. Laing ◽

Wendy Pelletier ◽

Gregory M. T. Guilcher ◽

Jennifer A. Chan

Keyword(s):

Childhood Cancer ◽

Pediatric Oncology ◽

Common Factors ◽

Living Cells ◽

The Past ◽

The Family ◽

Deceased Donors ◽

Cure Rates ◽

The Impact ◽

Parents Experiences

While cure rates in pediatric oncology have improved over the past 30 years, childhood cancer remains the second leading cause of death in children aged 1 to 14. Developing therapies often require using cancerous tissues, which may come from deceased donors. Tumor banks collect, store, and distribute these donated samples. While tumor banking is more common, factors that contribute to parents’ decision and the impact of it on the family are not well understood. The purpose of this hermeneutic study was to understand the meaning and impact of tumor banking for parents of children who have died from cancer. Findings suggest that parents donating their child’s tumors unexpectedly found a sense of meaning in their loss. They also found a legacy of their child’s life; the living cells in some ways assisted the parents with grief. Aspects of this sensitive conversation and decision are discussed from the perspective of the parents’ experiences.

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The Pediatric Oncology East and Mediterranean (POEM) group – A regional collaborative platform for childhood cancer healthcare professionals

Pediatric Hematology Oncology Journal ◽

10.1016/j.phoj.2020.03.002 ◽

2020 ◽

Vol 5 (1) ◽

pp. 3-6 ◽

Cited By ~ 3

Author(s):

Raya Saab ◽

Asim Belgaumi ◽

Samar Muwakkit ◽

Anas Obeid ◽

Carlos-Rodriguez Galindo ◽

...

Keyword(s):

Childhood Cancer ◽

Pediatric Oncology ◽

Healthcare Professionals ◽

Group A ◽

Collaborative Platform

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Online information related to childhood cancer and COVID-19 pandemic: a thematic analysis

Revista Brasileira de Enfermagem ◽

10.1590/0034-7167-2020-1056 ◽

2021 ◽

Vol 74 (suppl 1) ◽

Author(s):

Monika Wernet ◽

Aline Oliveira Silveira ◽

Mariana Lucas Rocha Cunha ◽

Patrícia Luciana Moreira Dias ◽

Marisa Utzig Cossul ◽

...

Keyword(s):

Family Functioning ◽

Childhood Cancer ◽

Pediatric Oncology ◽

Thematic Analysis ◽

Basic Knowledge ◽

The Internet ◽

Online Information ◽

Informational Support ◽

The Relationship

ABSTRACT Objective: To analyze online information available on the internet about COVID-19 and childhood cancer and discuss its reach potential with regard to supporting family functioning. Method: Documentary research supported by thematic analysis and the concept of family functioning and support. A total of 27 publications available on the websites of reference institutions in pediatric oncology, from March 1 to May 31, 2020, were analyzed. Results: Two themes guided the presentation of results with emphasis on language and sustainability assumptions to content, and to conveyed meanings and intentionality. The publications prospect families/people with basic knowledge about COVID-19 and have little information specific to the relationship with childhood cancer. Final considerations: Threatening circumstances require informational support. This study revealed incipient of specificity and a prescriptive tone in the online information available in early times of the pandemic, questioning the scope of support for family functioning.

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Does the guided online cognitive behavioral therapy for insomnia “i-Sleep youth” improve sleep of adolescents and young adults with insomnia after childhood cancer? (MICADO-study): Study protocol of a randomized-controlled trial

10.21203/rs.3.rs-65491/v1 ◽

2021 ◽

Author(s):

Shosha Peersmann ◽

Annemieke van Straten ◽

Gertjan Kaspers ◽

Adriana Thano ◽

Esther van den Bergh ◽

...

Keyword(s):

Quality Of Life ◽

Young Adults ◽

Cognitive Behavioral Therapy ◽

Childhood Cancer ◽

Pediatric Oncology ◽

Behavioral Therapy ◽

Cognitive Behavioral ◽

Adolescents And Young Adults ◽

Randomized Controlled

Abstract Background: Adolescents and young adults who had childhood cancer are at increased risk for insomnia, due to being critically ill during an important phase of their life for the development of good sleep habits. Insomnia is disabling and prevalent after childhood cancer (26-29%) and negatively impacts quality of life, fatigue, pain and general functioning and is often associated with other (mental) health problems. Insomnia and a history of childhood cancer both increase the risk of adverse health outcomes, posing a double burden for adolescents who had childhood cancer. The first-line treatment for insomnia is cognitive behavioral therapy for insomnia (CBT-I). However, access to this type of care is often limited. The guided online CBT-I treatment “i-Sleep” has been developed to facilitate access via online care. i-Sleep is shown effective in adult (breast cancer) patients, but it is unknown if iCBT-I is effective in pediatric oncology. Methods/design: We developed a youth version of i-Sleep. Our aim is to evaluate its effectiveness in a national randomized-controlled clinical trial comparing iCBT-I to a waiting-list control condition at 3 and 6 months ( n =70). The intervention group will be also assessed at 12 months to see whether the post-test effects are maintained. Adolescents and young adults aged 12-30 years with insomnia, diagnosed with (childhood) cancer, currently at least 6 months since their last cancer treatment will be eligible. Outcomes include sleep efficiency (actigraphic), insomnia severity (self-report), sleep and circadian activity rhythm parameters, fatigue, health-related quality of life, perceived cognitive functioning, chronic distress, depressive- and anxiety symptoms and intervention acceptability. Discussion: Insomnia is prevalent in the pediatric oncology population posing a double health burden for adolescents and young adults who had childhood cancer. If guided iCBT-I is effective, guidelines for insomnia can be installed to treat insomnia and potentially improve quality of life and the health of adolescents and young adults who had childhood cancer. Trial registration: NL7220 (NTR7419; Netherlands Trial register), registered 02-August-2018

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International Society of Paediatric Oncology Nurses Working Group: Supporting and Learning From Colleagues in Limited-Resource Countries

Journal of Global Oncology ◽

10.1200/jgo.2016.004572 ◽

2016 ◽

Vol 2 (3_suppl) ◽

pp. 29s-29s

Author(s):

Linda Z. Abramovitz ◽

Rehana Punjwani ◽

Julia Challinor

Keyword(s):

International Society ◽

Pediatric Oncology ◽

Working Group ◽

Professional Growth ◽

Conflicts Of Interest ◽

Limited Resource ◽

Paediatric Oncology ◽

Oncology Nurses ◽

Annual Conference ◽

Multiple Time

Abstract 44 Purpose: Globally, nurses caring for children and adolescents with cancer work in diverse practice settings. Nurses in low- and middle-income countries (LMIC) are challenged by the limited scope of their professional practice, resources and education. Opportunities for education, networking and professional growth inspire and empower nurses to improve the care of patients and families. Nurses are key members of the International Society of Paediatric Oncology (SIOP), which provides ongoing professional development. In 2010, the SIOP Pediatric Oncology in Developing Countries Committee's Nursing Working Group was formed to support and learn from nurses working in LMIC. Methods: Utilizing the Cure4Kids website from St Jude, the group holds monthly business and educational meetings and continues to network and collaborate on numerous projects. PODC Nursing Working Group recently published baseline standards for pediatric oncology nursing care in LMIC. A survey will now assess the implementation of baseline standards. LMIC nurses are being mentored to write abstracts and grants to increase global recognition of their work. In addition, an education repository of teaching materials is being established. Summary: The PODC Nursing Working Group and project groups are well established and achieving project deadlines. Educational programs including topics on abandonment, nursing in LMIC and abstracts have been well received by both nurses and physicians from LMIC and HIC. Challenges have included internet connectivity and scheduling meetings during daylight hours across the multiple time zones. Following the launch of monthly meetings in late 2015, our membership has increased by 20% from 61 to 76 members from 29 countries. Conclusions: The SIOP PODC Nursing Group has created a sustainable nursing community and continues to work collaboratively beyond the annual conference. The compassion and commitment to support patients and their families by providing the best care possible is the common thread for pediatric oncology nurses. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST: No COIs from the authors.

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Attitudes of 47 mothers of pediatric oncology patients toward genetic testing for cancer predisposition.

Journal of Clinical Oncology ◽

10.1200/jco.1996.14.2.415 ◽

1996 ◽

Vol 14 (2) ◽

pp. 415-421 ◽

Cited By ~ 35

Author(s):

A F Patenaude ◽

L Basili ◽

D L Fairclough ◽

F P Li

Keyword(s):

Pediatric Oncology ◽

Genetic Predisposition ◽

Cancer Susceptibility ◽

Susceptibility Genes ◽

Cancer Predisposition ◽

Healthy Children ◽

Oncology Patients ◽

Medical Benefit ◽

Cancer Susceptibility Genes ◽

Genetic Predisposition Testing

PURPOSE To assess attitudes toward testing for cancer susceptibility genes, we interviewed mothers of pediatric oncology patients about their cancer causation theories, interest in hypothetical predisposition testing for themselves and their healthy children, and anticipated impact of testing. PATIENTS AND METHODS The subjects were 47 mothers of two or more living children, one of whom was 6 to 24 months postdiagnosis of cancer. Potential risks and benefits of hypothetical genetic predisposition testing for cancer susceptibility were described. A semistructured interview assessed the following: (1) recall of discussions with the pediatric oncologist about the possible role of heredity in causing the child's cancer; (2) mothers' personal theories of the etiology of their child's cancer; (3) family cancer history; (4) interest in genetic predisposition testing for themselves and unaffected (cancer-free) children; and (5) expected sequelae of testing. RESULTS If genetic cancer predisposition tests were available, 51% of mothers would test themselves and 42% would test healthy children, even with no medical benefit. With established medical benefit, an additional 36% of mothers would seek testing for themselves and another 49% would test their healthy children. Interest in cancer predisposition testing among mothers extended far beyond those with significant family histories of cancer. Most mothers would consider minor children's wishes in the decision about testing and would tell children under age 18 their test results. CONCLUSION As increasing numbers of cancer susceptibility genes are identified, parents of pediatric oncology patients may be receptive to opportunities to test themselves and their healthy children. Counseling will be important to aid in decisions about testing. Research is essential to evaluate the long-term impact of predisposition testing.

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