HOW WE APPROACH THE INTEGRATION OF PSYCHOLOGICAL SERVICES IN THE CARE OF CHILDREN WITH CANCER PREDISPOSITION SYNDROMES

HOW WE APPROACH THE INTEGRATION OF PSYCHOLOGICAL SERVICES IN THE CARE OF CHILDREN WITH CANCER PREDISPOSITION SYNDROMES | Authorea try { document.documentElement.classList.add('js'); } catch (e) { } var _gaq = _gaq || []; _gaq.push(['_setAccount', 'G-8VDV14Y67G']); _gaq.push(['_trackPageview']); (function() { var ga = document.createElement('script'); ga.type = 'text/javascript'; ga.async = true; ga.src = ('https:' == document.location.protocol ? 'https://ssl' : 'http://www') + '.google-analytics.com/ga.js'; var s = document.getElementsByTagName('script')[0]; s.parentNode.insertBefore(ga, s); })(); Skip to main content Preprints Collections Wiley Open Research IET Open Research Ecological Society of Japan All Collections About About Authorea FAQs Contact Us Quick Search anywhere Search for preprint articles, keywords, etc. Search Search ADVANCED SEARCH SCROLL Pediatric Blood & Cancer This is a preprint and has not been peer reviewed. Data may be preliminary. 2 June 2025 V1 Latest version Share on HOW WE APPROACH THE INTEGRATION OF PSYCHOLOGICAL SERVICES IN THE CARE OF CHILDREN WITH CANCER PREDISPOSITION SYNDROMES Authors : Joan Hanania 0009-0008-4664-4174 [email protected] , Rowan Forbes Shepherd 0000-0003-4510-0542 , Lori Wiener , Katianne Sharp 0000-0002-4823-9702 , Morgan N. Similuk , Avram Denburg 0000-0003-0039-0742 , and Claire Wakefield Authors Info & Affiliations https://doi.org/10.22541/au.174884421.15372238/v1 Published Pediatric Blood & Cancer Version of record Peer review timeline 336 views 207 downloads Contents Abstract Abstract Background Approaches to clinical care across the lifespan Approaches to adolescent and young adult care Approaches to medical decision-making and intra-family communication Discussion Supplementary Material References Information & Authors Metrics & Citations View Options References Figures Tables Media Share Abstract The psychosocial aspects of pediatric hereditary cancer range beyond initial coping with the genetic diagnosis and are situated across the lifespan and continuum of care. Over the past 20 years, a growing body of evidence has demonstrated the need for tailored support to identify and manage psychosocial concerns of pediatric patients with, or at risk of, a cancer predisposition syndrome (CPS). As the unmet needs of young people with CPS continue to grow, the importance of psychology in the genomic era has expanded. This paper discusses how psychologists can be integrated with inter-or multi-disciplinary teams to address complex psychosocial needs. Title: HOW WE APPROACH THE INTEGRATION OF PSYCHOLOGICAL SERVICES IN THE CARE OF CHILDREN WITH CANCER PREDISPOSITION SYNDROMES Joan W. Hanania 1,2,3 , Rowan Forbes Shepherd 4 , Lori Wiener 5 , Katianne M. Howard Sharp 6 , Morgan N. Similuk 7 , Avram E. Denburg 8,9 , Claire E. Wakefield 10,11 Affiliations: 1 Department of Supportive Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA 2 Department of Psychiatry, Boston Children’s Hospital and Brigham and Women’s Hospital, Boston, Massachusetts, USA 3 Department of Psychiatry, Harvard Medical School, Boston, Massachusetts, USA 4 Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Medical Center Drive, Rockville, Maryland, USA 5 Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute (NCI), National Institutes of Health (NIH), Bethesda, Maryland, USA 6 Department of Psychology & Biobehavioral Sciences, St. Jude Children’s Research Hospital, Memphis, Tennessee, USA 7 Division of Intramural Research, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, Maryland, USA 8 Division of Hematology/Oncology, The Hospital for Sick Children, Toronto, Canada, Child Health Evaluative Sciences, Peter Gilgan Centre for Research and Learning, The Hospital for Sick Children, Toronto, Canada 9 Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, Canada 10 Discipline of Paediatrics, School of Clinical Medicine, UNSW Sydney, Sydney, New South Wales, Australia 11 Division of Quality of Life and Pediatric Palliative Care, Department of Pediatrics, Stanford University and Stanford Medicine Children’s Health, Palo Alto, California, USA Corresponding Author: Joan Hanania, PhD Pediatric Psychologist Department of Supportive Oncology Dana-Farber Cancer Institute, Boston Children’s Cancer and Blood Disorders Center, Brigham and Women’s Hospital Instructor of Psychology Harvard Medical School [email protected] (t) 617.632.6560; (f) 617.632.5677 Word Count: Abstract: 100; Main Text: 2,872 Number of Figures: 1 Number of Tables: 1 Short Running Title: How We Approach Psychology Support in Cancer Predisposition Keywords: Cancer genetic risk, pediatric cancer predisposition syndromes, psychosocial support, pediatric psychosocial oncology, childhood cancer. Abstract The psychosocial aspects of pediatric hereditary cancer range beyond initial coping with the genetic diagnosis and are situated across the lifespan and continuum of care. Over the past 20 years, a growing body of evidence has demonstrated the need for tailored support to identify and manage psychosocial concerns of pediatric patients with, or at risk of, a cancer predisposition syndrome (CPS). As the unmet needs of young people with CPS continue to grow, the importance of psychology in the genomic era has expanded. This paper discusses how psychologists can be integrated with inter-or multi-disciplinary teams to address complex psychosocial needs. Background Genomic technology is now well-established in the medical care of pediatric patients with cancer and those with a significant family history of cancer. The expansion of genetic testing in pediatric oncology has promoted the development of precision oncology: the use of molecular diagnostics and therapeutics to inform personalized decision-making for early cancer detection, risk assessment, diagnosis, prognosis, treatment, and surveillance management. In the wake of this growth, approximately 10-20% of childhood cancers have been associated with cancer predisposition syndromes (CPS), which are caused by germline pathogenic genetic variants (Kratz et al., 2021; Newman et al., 2021; Ripperger et al., 2017; Rossini et al., 2022; Schiffman et al., 2013). Although knowledge about the medical and psychosocial impacts of identifying CPS in childhood has expanded, there remain considerable limitations in the design and dissemination of supportive care to pediatric patients with CPS. There is an emerging need for tailored psychosocial support to better identify and manage psychosocial concerns of at-risk patients and their families. Psychological concerns related to CPS are multilayered and span genetic testing, genetic diagnosis, and the unfolding of CPS-related cancer risk across the lifespan and continuum of care (Barnett et al., 2022; Forbes Shepherd et al., 2021a, 2021b; Patenaude & Wakefield, 2021; Peters et al., 2016; Wakefield et al., 2016; Werner-Lin et al., 2020). In 2002, Patenaude et al., envisioned a vital role for psychologists in cancer genetics clinics. The paper highlights psychology’s key contributions and the dynamic partnership with genetic counselors to better support patients’ understanding and adaptation to cancer predisposition and associated cancer risk management. This collaboration includes supporting medical decision-making, managing uncertainty, family-communication, and addressing ethical considerations associated with genetic testing, particularly among minors. More than two decades later, the importance of psychology in the genomic era has become even more apparent. Psychology, as a mental health profession, is well-positioned to make valuable contributions to the burgeoning interdisciplinary field of genomic oncology, especially in light of the intersection with rising mental health needs in young people worldwide (McGorry et al., 2024). Potential contributions from psychology do not only apply to the roles of clinical psychologists in cancer genetics clinics, but extend into research, education, public health psychology, policymaking, and advocacy related to genetic cancer risk in children and adolescents. This paper aims to address how psychologists can be integrated with inter- or multi-disciplinary teams to meet the psychosocial needs of pediatric patients and families with, or at risk of, CPS. Through the use of clinical vignettes, we explore approaches to assessments of psychological coping and adaptation and the provision of psychotherapeutic interventions to patients and families with genetic cancer risk over time. Approaches to clinical care across the lifespan Jacob11Pseudonyms are used throughout., a competitive basketball player, was diagnosed with a non-metastatic osteosarcoma in his left proximal tibia weeks before his 13 th birthday. He completed standard chemotherapy and a limb salvage procedure. Jacob was initially referred to psychology by the medical team to support coping. A psychologist worked closely with Jacob in preparation for chemotherapy, surgery, and sperm banking. Psychological support was provided for pill swallowing techniques along with deep breathing/muscle relaxation and systematic desensitization. A clinical social worker also provided sibling support for separation anxiety and utilized cognitive behavioral therapy and supportive psychotherapy. At age 16, Jacob presented back to the pediatric oncology clinic following two weeks of headaches and an incident of twitching after falling asleep. An MRI revealed a frontal mass, and pathology confirmed the diagnosis of cranial primitive neuroectodermal tumor (PNET). The occurrence of a second rare tumor prompted genetic counseling and evaluation. Genetic counseling discussed the risks and benefits of genetic testing, and the implications of the possible outcomes with Jacob and his family, including addressing the risk of passing genetic cancer risk to future biological children. Standard at the time was TP53 mutation testing to evaluate for Li-Fraumeni syndrome, for which he was found to be a de novo mutation carrier. Jacob received craniospinal irradiation therapy, followed by eight cycles of chemotherapy. Neuropsychological assessment was conducted prior to and following radiation to assess the effects of radiation on verbal and nonverbal abilities, memory, attention, executive function, and quality of life. After PNET treatment, psychology was re-engaged to address reported episodes of anger, withdrawal from previously enjoyed activities, and depressive symptoms. In parallel, genetic counseling enrolled Jacob in LFS cancer screening consisting of annual whole-body and brain-MRI, abdominal ultrasound, among other cancer detection tests. Jacob’s psychologist was engaged prior to baseline scans to address screening-related anxiety for Jacob and his family. The psychologist also provided psychoeducation regarding nonpharmacologic pain management strategies (e.g., distraction, deep breathing) prior to his annual cancer risk screening. At age 19, Jacob had remained disease free though he had expressed considerable worry about disease recurrence, especially around annual cancer screening. He had gained significant weight and increased fatigue and had taken one college class. Psychology was once again engaged to address body image concerns (asymmetry of his lower extremities, hair loss, weight gain) and lack of funding to attend college. Vocational counseling was of interest to Jacob. He obtained practical suggestions for jobs where he might be most successful and was able to find part-time work that he enjoyed and where he was able to make new friends. Jacob and his mother worked closely with the oncology social worker, who provided counseling for his mother and assistance with a Social Security Disability application. Jacob was next seen at age 29 when a new, late-stage pancreatic adenocarcinoma was identified during the annual cancer screening. He was then transitioned from pediatric oncology to adult oncology care. Jacob’s poor prognosis initiated engagement with adult psychology service to address significant anxiety, anticipatory grief, and caregiver and sibling support. Jacob died several months later. The family was connected to a psychologist who provided initial grief and bereavement intervention and further assisted with establishing support through a community-based bereavement program. Approaches to adolescent and young adult care Carlos was a 17-year-old Hispanic male with a history of lung cysts and a thyroid goiter, which initiated genetic counseling and testing identifying a de novo pathogenic DICER1 variant. DICER1 -related tumor predisposition, initially linked to pleuropulmonary blastoma, is now known to include other benign and malignant tumors, such as thyroid cancer, cystic nephroma, and ovarian and Sertoli cell tumors (Schultz et al., 2018). Carlos was a senior in high school actively involved in Reserve Officers’ Training Corps. He planned to join the military following graduation, which would follow in the footsteps of his father, brother, and grandfather. During genetic counseling to follow-up about DICER1 findings, Carlos was noted to be emotionally withdrawn and disengaged during discussion about implications for future cancer risk management and upcoming surgical consult for total thyroidectomy. The medical team consulted psychology to address coping and adjustment concerns. Carlos presented to psychology with depressed mood, increasing social isolation and withdrawal, school truancy, hypersomnia, and suicidal ideation. Carlos and his parents reported a history of psychology services for prior depressive episodes and suicidal ideation with plan and preparatory behavior (e.g., retrieving family member’s firearm). Due to recent medical diagnoses and resulting surgical treatment, Carlos reported that he was no longer eligible to join the military as planned, which he found highly distressing. Carlos’s parents reported not discussing DICER1 or his upcoming thyroidectomy with or around him out of concern for upsetting him, with uncertainty expressed about his understanding of DICER1 and thyroidectomy. Carlos struggled to cope with the impact of DICER1 on career and family planning. Psychology engaged Carlos in a risk assessment and ongoing safety planning as needed throughout the duration of psychotherapy. Carlos was observed to disengage as a coping strategy when he felt distressed. As a result, Carlos appeared to have limited understanding about DICER1 , surveillance recommendations, and his upcoming thyroidectomy. Given there was no family history of DICER1 , his parents were also limited in their own understanding and experience with tumor surveillance. Psychology collaborated with Carlos’s genetic counselor to support his understanding, with the genetic counselor providing DICER1 education, resources, and psychology teaching him strategies for distress tolerance, identifying his questions, and advocating for his informational and emotional needs. Carlos was engaged in behavioral activation to target his low mood. As his mood improved and he became more socially engaged, psychological therapy shifted to incorporating Acceptance and Commitment Therapy focused on identifying his values and ways of aligning his behavior and life plans with those values. For example, tradition and family legacy were important to him and he benefited from exploring other career and family building options that were still aligned with those values. Identifying these options increased his hope and optimism for the future, which further improved his mood. A vocational school consultation was arranged to assist him with career and higher education planning. Psychology also provided education regarding nonpharmacologic pain management strategies (e.g., distraction, deep breathing) prior to his total thyroidectomy, followed by anticipatory guidance, goal setting, and systematic monitoring of adherence with hormone therapy. Approaches to medical decision-making and intra-family communication Sophia, a healthy 15-year-old girl who played varsity volleyball and enjoyed singing presented for genetic counseling to discuss cancer predisposition and considerations for genetic testing. Sophia’s mother was diagnosed with advanced-stage ovarian cancer and found to have a BRCA1 pathogenic variant, which causes increased risk of breast, ovarian, and pancreatic cancers, among others (Momozawa et al., 2022). During the consultation, both Sophia and her mother expressed a strong desire for Sophia to undergo genetic testing while her mother was still alive. The initial clinical recommendation through the medical oncologist was to defer testing until adulthood, aligning with most established ethical and developmental guidelines (Botkin et al., 2015). Though Sophia initially presented as reserved, she was able to articulate that knowing her genetic status now would allow for meaningful family discussions, particularly given her mother’s terminal prognosis. Psychology’s involvement was pivotal in navigating this emotionally and ethically complex clinical case for the family and other members of the care team. The psychologist worked closely with the oncology team and genetic counselor to facilitate a structured approach to supporting the family as a whole. This included completing a developmental assessment to evaluate Sophia’s cognitive and emotional readiness for genetic testing and her ability to understand the potential implications of the results. Psychology also engaged the family in values clarification to explore motivations, expectations, and potential psychosocial ramifications of adolescent testing. Psychology support was also provided prior to genetic testing to support understanding of possible outcomes and outline adaptive coping strategies to optimize flexibility, meaning making, and well-being. Another important contribution centered around the provision of grief and anticipatory loss support. This allowed Sophia a holding space to process her emotions surrounding the mother’s terminal illness and the potential impact of genetic results on her sense of identity and future planning. Sophia received a positive result for the familial pathogenic BRCA1 variant. This finding suggests an increased risk of developing certain cancers throughout lifespan. Psychology support was provided for initial coping with genetic test results and developmentally appropriate support for ongoing surveillance. Throughout this time, psychology collaborated closely with genetic counseling and fostered partnerships with the medical team. This ensured patient-centered and developmentally appropriate disclosure of information that is aligned with Sophia’s family values and concordant with goals of care. Discussion Increasing implementation of genetic and genomic testing in oncology offers both tremendous promises and adds significant psychological complexity, especially for children, adolescents, and their families. This article highlights the unique and critical role psychologists can play in supporting the needs of patients with, or at risk of, a cancer predisposition syndrome. The three patient vignettes demonstrate how psychologists can collaborate with the broader care team—including oncology, clinical genetics, genetic counseling, social work, and supportive care to support young people navigating the experience of living with high genetic risk of cancer. Each case reveals the highly variable challenges in the face of a CPS diagnosis, ranging from engaging in complex medical-decision making at an early age, experiencing clinical anxiety and depression, navigating difficulties with identity and body image, managing life-long medical surveillance, and coping with grief and loss. They also underscore the nuanced roles that psychologists can play in helping young people navigate and mitigate those challenges, through both targeted and sustained interventions throughout their cancer trajectory and across the life-course. Jacob and Carlos’s cases highlight the interplay between common developmental considerations for adolescents and young adults and the impacts of a CPS, especially with regards to identity formation, career planning, and future orientation. Carlos’s loss of his expected and desired career pathway demonstrates how a CPS diagnosis can fundamentally alter a young person’s life trajectory, leading to severe psychological distress, and even suicidal ideation. His case also demonstrates that in partnership with his broader care team, sustained psychological intervention can enable young people with major psychological challenges to adapt to life altering diagnoses. Sophia’s case reveals the valuable role of psychology in cases with ethical and developmental complexity, such as consideration of genetic testing for an adult-onset syndrome in an adolescent. Although genetic testing for adult-onset conditions in minors is typically not recommended, individualized psychological assessment in this case enabled Sophia and her family to engage in a decision-making process that balanced the unique clinical, psychosocial, and ethical factors at play in her family. Psychological services not only supported Sophia in her medical decision-making but also supported her in managing her anticipatory grief and in proactively engaging in important health behaviors and surveillance management as she matured. Together, these cases demonstrate that psychology services are not only beneficial, but essential, in the comprehensive care of children and young people living with, or at risk of, a CPS. Specialized psychologists who understand the complexities faced by young people in this context are able to support young people’s informed consent and medical decision-making, foster adaptive coping in the young person and their family, enhance family communication and support, and guide individualized ethical deliberations. Given that the impacts of CPS span decades, continuity of psychological care as children and young people mature is critical, as is collaboration between psychologists and across disciplines (Fig. 1). Despite the critical nature of psychological support for young people and their families, current models of psychological care for young people are often not well-established or well-integrated within cancer genetics clinics (e.g., Esplen & Kohut, 2025; Patenaude et al., 2003). Routine brief, non-stigmatizing, psychosocial screenings are recommended to identify psychosocial risks and resources within youth and their families and facilitate the delivery of tailored evidence-based interventions to manage concerns related to cancer predisposition (Wiener et al., 2015). In some settings, specialist psychology services are limited, or unavailable, meaning that teams rely heavily on genetic counselors and other members of the care team to manage the psychological needs of their patients, placing additional pressure on an already over-stretched workforce. Strengthening community connections, interdisciplinary collaboration with clinical social workers, and partnership with psychosocial oncology organizations is also imperative to meet these complex needs. This paper sets out an example of best practice for integrating psychology as a critical approach to meeting the needs of this population while also reducing burden on other members of the care team. Primary psychology roles in the care of pediatric cancer predisposition are outlined in Table 1. Future Opportunities Continued psychology research and clinical practice is paramount to the care of at-risk pediatric and adolescent patients with CPS and their families. There is extensive evidence supporting the critical role of psychology in addressing psychosocial concerns in pediatric oncology (e.g., Kazak et al., 2024), with growing attention to the role of psychology within palliative care (Thompson et al., 2024). The establishment of evidence-based psychosocial standards of care in pediatric oncology was foundational in establishing the critical importance of access to behavioral healthcare services for pediatric cancer patients and their families (Wiener et al., 2015). These standards, which are tailored to resources available and patient-centered needs, advocated for universal access to psychosocial support to all children with cancer (Wiener et al., 2015). This article analogously underscores the need for research-based and practice-informed establishment of comprehensive interdisciplinary competencies within pediatric cancer genetic risk contexts to ensure access to essential psychosocial care among pediatric patients with CPS and their families. It anticipates the need for explicit and evidence-based models of care for children and youth with CPS that integrate psychology expertise and intervention across the cancer care continuum. Future research should investigate the feasibility, cost, and effectiveness of varied models of care and service interventions to generate robust evidence on optimal approaches to the psychological support of children and youth with CPS and their families. This is particularly warranted when addressing the under-explored needs of adolescents and young adults with CPS and navigating pediatric to adult health care transitions. Conclusion The management of underlying cancer genetic predisposition among pediatric patients is a powerful indication of the significant advances in genomic medicine to date. Psychology support is a foundational component of comprehensive care to young patients with, or at risk of, CPS and their families. This article highlights the unique and critical role psychologists can play in supporting the multidimensional needs of young patients and families across the developmental trajectory and continuum of care. DISCLOSURES This work was supported, in part, by the Intramural Program of the National Cancer Institute, National Institutes of Health. K.M. Howard Sharp is supported by a Clinician Scientist Development Grant (grant number CSDG-22-102-01-CPSH) from the American Cancer Society. 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Collection Pediatric Blood & Cancer Keywords cancer genetics pediatric oncology psychology Authors Affiliations Joan Hanania 0009-0008-4664-4174 [email protected] Dana-Farber Cancer Institute View all articles by this author Rowan Forbes Shepherd 0000-0003-4510-0542 National Cancer Institute Division of Cancer Epidemiology and Genetics View all articles by this author Lori Wiener National Cancer Institute Center for Cancer Research View all articles by this author Katianne Sharp 0000-0002-4823-9702 St Jude Children's Research Hospital View all articles by this author Morgan N. Similuk National Institute of Allergy and Infectious Diseases Division of Intramural Research View all articles by this author Avram Denburg 0000-0003-0039-0742 University of Toronto Dalla Lana School of Public Health View all articles by this author Claire Wakefield University of New South Wales School of Clinical Medicine View all articles by this author Metrics & Citations Metrics Article Usage 336 views 207 downloads .FvxKWukQNSOunydq8rnd { width: 100px; } Citations Download citation Joan Hanania, Rowan Forbes Shepherd, Lori Wiener, et al. HOW WE APPROACH THE INTEGRATION OF PSYCHOLOGICAL SERVICES IN THE CARE OF CHILDREN WITH CANCER PREDISPOSITION SYNDROMES. Authorea . 02 June 2025. DOI: https://doi.org/10.22541/au.174884421.15372238/v1 If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. Simply select your manager software from the list below and click Download. For more information or tips please see 'Downloading to a citation manager' in the Help menu . Format Please select one from the list RIS (ProCite, Reference Manager) EndNote BibTex Medlars RefWorks Direct import Tips for downloading citations document.getElementById('citMgrHelpLink').addEventListener('click', function() { popupHelp(this.href); return false; }); $(".js__slcInclude").on("change", function(e){ if ($(this).val() == 'refworks') $('#direct').prop("checked", false); $('#direct').prop("disabled", ($(this).val() == 'refworks')); }); Cited by Amanda M. Harrington, John August D’Orazio, Developing a multidisciplinary pediatric cancer predisposition service at a mid-sized children’s hospital, Frontiers in Oncology, 16 , (2026). https://doi.org/10.3389/fonc.2026.1794874 Crossref Loading... View Options View options PDF View PDF Figures Tables Media Share Share Share article link Copy Link Copied! Copying failed. 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