A Conceptual Model of Financial Toxicity in Pediatric Oncology

Abstract

The purpose of this article is to explicate a conceptual framework for financial toxicity in pediatric oncology to guide nursing practice and research. The framework is based on one for financial outcomes of severe illness attributed to Scott Ramsey and adapted by the National Cancer Institute to describe relationships between preexisting factors, a cancer diagnosis, financial distress, and health outcomes for adult cancer patients and survivors. The adaption for pediatric oncology was informed by the results of a systematic scoping review to identify advances and gaps in the recent literature about the personal costs of illness to parents in the pediatric oncology context. The conceptual model for pediatric oncology indicates that existing and dynamic parent and family factors, other risk and protective factors, the child's diagnosis and treatment, and treatment-related financial costs can affect parent financial coping behaviors and parent health and family financial outcomes, all of which may affect child outcomes. Additionally, nursing's historic emphasis on holistic care, quality of life, and health determinants justify attention to financial toxicity as a nursing role. Therefore, pediatric oncology nurses must be sensitive to financial toxicity and related risk factors, become comfortable communicating about treatment-related financial costs and financial distress with parents and other health professionals, and collaborate in efforts that draw on the expertise of multiple stakeholders to identify potential or actual financial toxicity in parents and mitigate its impact on childhood cancer health outcomes through direct care, referral, research, quality improvement, and health advocacy.

Financial toxicity of childhood cancer and changes to parents’ employment after treatment completion

“…Using standard tools such as the Psychosocial Assessment Tool (PAT2.0), 38,39 social workers (and pediatric nurses where applicable) can discuss financial options with families. They can also help parents complete complex government payment forms and provide information about where to access financial support, including referral to financial counselors who can provide expert guidance for financial and employment decision‐making 8 …”

“…Standards of psychosocial care for pediatric cancer include the whole healthcare team routinely assessing families in all psychosocial domains throughout the cancer trajectory, including financial toxicity. 8,37 The authors of these standards argue that pediatric oncology nurses can help identify parents who need financial assistance. Nurses can then make referrals to social workers and other psychosocial professionals who will conduct an assessment and provide advocacy on which decisions can put the family on either a positive or negative financial trajectory.…”

“…6 Santacroce and Kneipp developed a conceptual model that depicts the complex network of interrelated and dynamic factors contributing to financial toxicity after childhood cancer. 8 The model proposes that the direct (i.e., out-of-pocket costs of the child's medical care) and indirect (i.e., reduced family income due to employment disruptions) financial costs of a child's cancer diagnosis can in time can lead to poorer family financial outcomes including falling into poverty. This process is influenced by preexisting parent and family factors.…”

“…This process is influenced by preexisting parent and family factors. 8 For instance, families of lower socioeconomic status (SES), residing rurally, living in low-/middle-income countries and/or those who do not have access to universal healthcare, can experience particularly severe financial toxicity as a result of childhood cancer. 5,7,[9][10][11][12] This study will explore whether factors such as SES and rurality remain risk factors for families living in a high-income country, with access to universal healthcare.…”

Fathers' psychological responses to pediatric cancer–induced financial distress

“…Our survey included open‐ended questions that asked parents to type their responses into text boxes. Our conceptual model of pediatric cancer–induced financial toxicity 17 provided guidance regarding the topical areas addressed by survey questions. The questions did not reference a time period; once individuals are diagnosed with cancer, they will incur higher healthcare‐related costs than those without that medical history 18…”