Stakeholder-informed conceptual framework for financial burden among adolescents and young adults with cancer.

Cancer and its treatments can result in substantial financial burden that may be especially distressing for adolescents and young adults (AYAs) since they are at a developmental stage focused on completing one's education and establishing independence. The purpose of this study was to develop a conceptual model of financial burden among AYA cancer patients to inform development of a financial burden measure. In-depth concept elicitation interviews were conducted with a purposive-selected stakeholder sample (36 AYAs and 36 AYA oncology health care providers). The constant comparative method was used to identify themes that illustrate AYAs' experience of financial burden by stakeholder groups. Eleven financial burden themes emerged: (1) impact of socioeconomic status and age; (2) significant cancer costs; (3) indirect cost "ripple effects"; (4) limited awareness of costs (adolescents); (5) emotional impact; (6) feeling overwhelmed navigating the health care system; (7) treatment decision modifications; (8) reducing spending; (9) coping strategies; (10) financial support; and (11) long-lasting impact. The conceptual model highlights the importance of material, psychosocial, and behavioral domains of financial burden with an emphasis on phase along the cancer continuum and developmental stage in the experience of financial burden for AYAs. Issues presented in the voice of AYA patients and providers highlight the profound impact of financial burden in this survivor group. The next step in this work will be to develop and test a patient-reported measure of financial burden among AYA cancer survivors.

Danhauer SC ，Canzona M ，Tucker-Seeley RD ，Reeve BB ，Nightingale CL ，Howard DS ，Puccinelli-Ortega N ，Little-Greene D ，Salsman JM ... -  《-》

Financial burden for caregivers of adolescents and young adults with cancer.

Adolescent and young adult (AYA) cancer survivors are vulnerable to cancer-related financial burden, which is likely shared by their caregivers. This study aims to enhance an existing conceptual model of financial burden by conducting concept elicitation interviews with caregivers to generate knowledge that can be translated to inform instrumental and psychosocial support in cancer care. Qualitative concept elicitation interviews were conducted with 24 caregivers of AYA cancer survivors (caregivers of adolescents, n = 12; caregivers of emerging adults, n = 12) recruited from four sites. Constant comparative methods were used to identify themes, and results were interpreted and organized into domains of the conceptual model. We also explored COVID-19 related financial impacts among a subset (n = 12) of caregivers. Seven themes emerged, which varied by age group and strengthened the conceptualization of the model. Themes centered on: (1) direct and indirect costs of cancer; (2) impact of socioeconomic status on financial burden; (3) caregiver desire to shield AYAs from distress due to financial burden; (4) strategies to manage cancer-related costs; (5) worries about AYAs' financial future; (6) seeking and receiving financial support; and (7) navigating the healthcare system. Findings also revealed that COVID-19 exacerbates financial burden for some caregivers. Building upon our prior work, we have adapted the conceptual model of financial burden to reflect perspectives of AYAs, oncology providers, and now, caregivers. An important next step is to develop a reliable and valid self-report measure of financial burden among caregivers of AYA cancer survivors.

Nightingale CL ，Canzona MR ，Danhauer SC ，Reeve BB ，Howard DS ，Tucker-Seeley RD ，Golden SLS ，Little-Greene D ，Roth ME ，Victorson DE ，Salsman JM ... -  《-》

A conceptual model of fertility concerns among adolescents and young adults with cancer.

For adolescents and young adults (AYAs), cancer-related fertility concerns (FC) are salient, disruptive, and complex. Clinical communication about FC and fertility preservation options are suboptimal, increasing patient distress. The purpose of this study is to construct a conceptual model of FC among AYAs with cancer to inform future measurement development. Concept elicitation interviews were conducted with a purposive sample of stakeholders: 36 AYAs (10 adolescents, 12 emerging adults, and 14 young adults), 36 AYA oncology health care providers, and 12 content experts in cancer-related infertility. The constant comparative method was used to identify themes and properties that illustrate AYAs' conceptualization and/or experience of FC. Thirteen themes characterized FC among AYAs with cancer, varying by stakeholder group and domain affiliations. Themes were grouped by four domains (e.g., affective, information, coping, and logistical), which organized the conceptual model. Affective experiences were further determined to be an important component within the other three domains. AYAs' fertility and fertility preservation experiences were shaped by communication factors and timing factors including placement along the lifespan/cancer continuum. AYA FC are characterized by uncertainty and confusion that may contribute to future decisional regret or magnify feelings of loss. Results add to previous research by examining individual, relational, and health care factors that fluctuate to inform fertility preservation perceptions and decision-making across the AYA age spectrum. Findings will be used to develop and test new self-report measures of FC among AYAs with cancer and survivors using classic and modern measurement theory approaches.

Canzona MR ，Victorson DE ，Murphy K ，Clayman ML ，Patel B ，Puccinelli-Ortega N ，McLean TW ，Harry O ，Little-Greene D ，Salsman JM ... -  《-》

Like Prisoners in a War Camp: Adolescents and Young Adult Cancer Survivors' Perspectives of Disconnectedness From Healthcare Providers During Cancer Treatment.

Phillips CR ，Haase JE 《-》

Financial Toxicity in Adolescents and Young Adults With Cancer: A Concept Analysis.

A cancer diagnosis as an adolescent and young adult (AYA) poses exceptional challenges, including potential greater financial toxicity than older survivors experience who have had more time for career establishment and to build financial assets. Costs to patients have increased more than the past decade; prospects for AYA long-term survival have also increased. A better understanding of what financial toxicity is, how it presents, and the immediate and longer-term implications for AYAs is needed. The aim of this study was to analyze the concept financial toxicity in AYAs diagnosed with cancer. We used Rodgers' evolutionary method and articles published between January 2013 and December 2020. We identified key antecedents, attributes, and consequences of financial toxicity in AYAs and review its related terms that have often been used as surrogate terms. Attributes were financial burden, financial distress, and competing financial pressures. Consequences were mostly adverse and persistent and included engaging in various financial problem-solving behaviors, material hardship and poor financial well-being, and deteriorated quality of life. Results of this analysis clarify financial toxicity and provide guidance for a conceptual framework in the context of AYA cancer survivorship. Its consequences in AYAs with cancer are profound and will continue to evolve over time with changes in health systems and the economy. Oncology nurses should understand the attributes and consequences of financial toxicity for AYAs throughout the cancer trajectory. Future research on financial toxicity should extend across AYAs living with other chronic illnesses and cancer survivors in other age groups.

Ghazal LV ，Gormley M ，Merriman JD ，Santacroce SJ ... -  《-》