Family financial hardship has emerged as a burden of pediatric cancer treatment with negative implications for family well‐being. As part of an extensive project to create evidence‐based standards for the psychosocial care of children with cancer, we performed a literature review of pediatric cancer‐associated financial hardship utilizing six databases, and identified 24 publications for incorporation into this review. Financial hardship during childhood cancer was found to affect a significant proportion of the population and to negatively impact family well‐being. Existing literature supports a strong recommendation for assessment of financial hardship as a component of comprehensive psychosocial care in pediatric oncology. Pediatr Blood Cancer © 2015 Wiley Periodicals, Inc.

Hematopoietic cell transplantation (HCT) is an important curative treatment for children with high-risk hematologic malignancies and solid tumors, and increasingly, non-malignant diseases. Given improvements in care, there is a growing number of long-term survivors of pediatric HCT. Compared with non-transplanted childhood cancer survivors, HCT survivors have been shown to have a substantially increased burden of serious chronic conditions and impairments involving virtually every organ system and overall quality of life. This likely reflects the joint contributions of pre-transplant treatment exposures and organ dysfunction, the transplant conditioning regimen, and any post-transplant graft versus host disease (GVHD). In response, the Children’s Oncology Group (COG) has created Long-Term Follow-Up Guidelines (www.survivorshipguidelines.org) for survivors of childhood, adolescent, and young adult cancer, including those treated with HCT. Guidelines taskforces, consisting of HCT specialists, other pediatric oncologists, radiation oncologists, organ-specific subspecialists, nurses, social workers, other healthcare professionals, and patient advocates have systematically reviewed the literature with regards to late effects after childhood cancer and HCT since 2002, with the most recent review completed in 2013. For the most recent review cycle, over 800 articles from the medical literature relevant to childhood cancer and HCT survivorship were reviewed, including 586 original research articles. Provided here-in is an organ system-based overview that emphasizes the most relevant COG recommendations (with accompanying evidence grade) for the long-term follow-up care of childhood HCT survivors (regardless of current age) based on a rigorous review of the available evidence. These recommendations cover both autologous and allogeneic HCT survivors, those transplanted for non-malignant diseases, and those with a history of chronic GVHD.

Some themes differentiated sibling donors of successful and unsuccessful transplants, while others were common to both groups. All emergent themes reinforced the importance of providing sibling donors with developmentally appropriate, accurate information and long-term psychological support.

In 2015, an interdisciplinary group of psychosocial experts developed The Standards of Psychosocial Care for Children with Cancer and Their Families. This paper presents data from a national survey of pediatric oncology social workers and their experiences in delivering psychosocial care to children and families. In total, 107 social workers from 81 cancer institutions participated in a 25-item online survey that mirrored the 15 Standards for Psychosocial Care. Both closed and open-ended questions were included. Social work participants reported that psychosocial support is being provided at most cancer centers surveyed, primarily by social workers and child life specialists, addressing adaptation to the cancer diagnosis, treatment, and transitions into survivorship or end-of-life care and bereavement. While social workers reported offering comprehensive services throughout the cancer trajectory, many of the 2015 Standards are not being systematically implemented. Areas for improvement include funding for psychosocial support staff and programs, incorporation of standardized assessment measures, assessment for financial burden throughout treatment and beyond, consistent access to psychology and psychiatry, integrated care for parents and siblings, and more inclusion of palliative care services from time of diagnosis.