Advanced practice providers (APPs) and nurses are instrumental in carrying out the mission of PNOC and providing access to clinical trials for children with brain tumors. Our adult and pediatric colleagues have led an effort to engage nursing and nurse scientists in collaborative work within clinical trial consortiums. These groups have recognized untapped areas of research including fatigue, patient and family education, symptom management, fertility, family coping, quality of life, long-term sequelae of treatment and other areas of survivorship. Formalizing the incorporation of an APP and nursing group creates an opportunity to enhance the work of PNOC surrounding the clinical care of children with brain tumors and the illness experience of patients and their families. Our committee will directly mirror the mission and core values of PNOC.
Our group was implemented in March 2021 and we are currently in our infancy stage of planning and development. Our first project is conducting a needs assessment survey of physician, nursing, APP and clinical research coordinators (CRCs) associated with PNOC. This survey will go out to all PNOC participating sites. This data will inform us on how to define the function and structure of this new group.
Our current goals of this group includes:
- Assigning a nurse/APP investigator to each future protocol. The nurse/APP investigator would work directly with the study team, PNOC, and PI in reviewing each protocol in development and ongoing review of open studies and amendments. The nurse/APP investigator would also participate in protocol related conference calls, meetings, and communication.
- Our group will provide or refine any necessary resources or supportive care documentation to enhance each protocol implementation. We would help review and develop aspects of the protocol including drug administration, supportive care guidelines, and toxicity management.
- Our committee plans to assist with international expansion and will function as a resource to new sites as they open each protocol.
- Our committee will foster nurse-led research opportunities to answer pertinent clinical questions that have emerged as the field of pediatric neuro-oncology continues to evolve and expand with new and innovative therapies.
- Our committee will assist PNOC in fundraising for future trials, scientific discovery, and funds to support the PNOC regulatory team.