Pediatric oncology provider perspectives and practices: Supporting patients and families in schooling after cancer diagnosis

Abstract

Background Cognitive limitations are common after childhood cancer and require assessment and support in the medical and school setting. Pediatric oncology providers are tasked with educating families about the side effects of disease/treatment, and supporting families as they navigate the associated challenges. Despite this important role, little is known about the training, practice, and knowledge of providers in the domain of cognitive/school impacts. Methods An online survey was emailed to Children's Oncology Group (COG) member physicians in the United States. The survey consisted of 42 questions about training and practice, and 4 knowledge questions about neurocognitive impacts and school supports. Results Surveys were completed by 282 physicians representing 64% of COG institutions and a diverse group of experience and institution size. The pediatric oncologist was reported most frequently (93%) as the person at their institution to provide information to families on this topic, yet 54% reported receiving no specific training in this area and the majority (66%) reported to only “somewhat” understand the issues pediatric oncology patients face when returning to school. A minority reported available institutional guidelines (42%) or screening tools (19%) to assist in making referrals or assessments. Knowledge questions concerning health conditions qualifying children for school supports received the fewest correct answers. The majority (77%) thought more training would be helpful. Conclusions Additional training about cognitive impacts and schooling challenges associated with childhood cancer is needed to prepare providers to support parents/children. In addition, establishing policy guidelines and screening procedures may help support providers in providing care.

School and educational support programmes for paediatric oncology patients and survivors: A systematic review of evidence and recommendations for future research and practice

“…Furthermore, our review was limited to programmes that predominantly reported outcomes for the child with cancer and their parents. However, research suggests that siblings, peers, teachers, and healthcare professionals have distinct information and support needs in the process of delivering and advocating education support, which should be accounted for in future education support programmes 65‐67 . The scope of this review is limited by the exclusion of studies published in languages other than English.…”

Educational Pain Points for Pediatric Brain Tumor Survivors: Review of Risks and Remedies

“…Communication between parents, educators, and medical teams is essential for optimal educational support for the PBT survivor, yet researchers consistently report communication problems and gaps among all stakeholders thus representing still another significant pain point for PBT survivors. For example, parents report feeling unprepared by the oncology team regarding their child’s educational needs [ 70 ], and at the same time, healthcare teams report being unsure about how to help parents navigate the complexities of school [ 57 ] and lack knowledge of specific criteria for eligibility for special services at school [ 71 ]. In addition, even if informed by the medical team of potential treatment-related limitations, individual healthcare providers may have different assessments and methods of communication of cognitive and academic risk, and parents may misunderstand those risks [ 72 ].…”

Multidisciplinary Rehabilitation Within Pediatric Cancer Care: A Holistic Approach

“…Two recent studies identified that around 50% of parents surveyed reported minimal to no education on the effect of cancer treatment on school performance while 77% of oncology providers reported a need for increased training on the cognitive effects and school reentry. 13,14 All of the cancer centers provided education to parents on school reentry, but the authors questioned whether the delivery or timing may have impacted the low parental recollection of this education. 14 The role of all of the rehabilitative therapists (PT, OT, and SLP) in providing education to families and providers on undergoing school transition should be considered in every multidisciplinary cancer team.…”

“…13,14 All of the cancer centers provided education to parents on school reentry, but the authors questioned whether the delivery or timing may have impacted the low parental recollection of this education. 14 The role of all of the rehabilitative therapists (PT, OT, and SLP) in providing education to families and providers on undergoing school transition should be considered in every multidisciplinary cancer team. Improvement in this type of education allows parents to take on the new role of advocate and should be included within all disciplines that provide care to these children.…”

“…Improvement in this type of education allows parents to take on the new role of advocate and should be included within all disciplines that provide care to these children. 14 Success within the school environment can be widely influenced by socialization and effect of fatigue. The ability to make and maintain peer-to-peer relations can be complicated, given the cognitive impairments, frequent school absences, and impaired concentration.…”