Conceptions of Legacy Among People Making Treatment Choices for Serious Illness: Protocol for a Scoping Review

BackgroundLegacy—what one leaves behind and how one hopes to be remembered after death—is an unexplored and important dimension of decision-making for people facing serious illnesses. A preliminary literature review suggests that patients facing serious illness consider legacy when making medical decisions, for example, forgoing expensive treatment with limited or unknown clinical benefit to preserve one’s inheritance for their children. To date, very little is known about the conceptual foundations of legacy. No conceptual frameworks exist that provide a comprehensive understanding of how legacy considerations relate to patient choices about their medical care. ObjectiveThe objective of this scoping review is to understand the extent and type of research addressing the concept of legacy by people facing serious illness to inform a conceptual framework of legacy and patient treatment choices. MethodsThis protocol follows the guidelines put forth by Levac et al, which expands the framework introduced by Arksey and O’Malley, as well as the Joanna Briggs Institute Reviewer’s manual. This scoping review will explore several electronic databases including PubMed, Medline, CINAHL, Cochrane Library, PsycINFO, and others and will include legacy-specific gray literature, including dissertation research available via ProQuest. An initial search will be conducted in English-language literature from 1990 to the present with selected keywords to identify relevant articles and refine the search strategy. After the search strategy has been finalized, 2 independent reviewers will undertake a 2-part study selection process. In the first step, reviewers will screen article titles and abstracts to identify the eligibility of each article based on predetermined exclusion or inclusion criteria. A third senior reviewer will arbitrate discrepancies regarding inclusions or exclusions. During the second step, the full texts will be screened by 2 reviewers, and only relevant articles will be kept. Relevant study data will be extracted, collated, and charted to summarize the key findings related to the construct of legacy. ResultsThis study will identify how people facing serious illness define legacy, and how their thinking about legacy impacts the choices they make about their medical treatments. We will note gaps in the literature base. The findings of this study will inform a conceptual model that outlines how ideas about legacy impact the patient’s treatment choices. The results of this study will be submitted to an indexed journal. ConclusionsVery little is known about the role of legacy in the treatment decisions of patients across the continuum of serious illness. In particular, no comprehensive conceptual model exists that would provide an understanding of how legacy is considered by people making decisions about their care during serious illness. This study will be among the first to construct a conceptual model detailing how considerations of legacy impact medical decision-making for people facing or living with serious illnesses. International Registered Report Identifier (IRRID)DERR1-10.2196/4079

Colorectal cancer disparities in Latin America: Mortality trends 1990-2019 and a paradox association with human development.

BackgroundColorectal cancer mortality is growing in Latin America. It is known for a marked income disparity between its countries, and there is a consistent association with development. Our purpose was to describe trends in colorectal cancer mortality in Latin America between 1990 and 2019, identifying differences by human development categories.MethodsWe extracted age-adjusted mortality rate from the Global Burden of Disease (GBD) Study from 22 Latin American countries, subregions, and country groups previously ranked by the GBD study due to Sociodemographic Index (SDI) between 1990 and 2019. We applied the segmented regression model to analyze the time trend. Also, we estimated the correlation between mortality rates and Human Development Index (HDI) categories for countries.ResultsBetween 1990 and 2019, colorectal cancer adjusted mortality rate increased by 20.56% in Latin America (95% CI 19.75% - 21.25%). Between 1990 and 2004, the average annual percentage change (APC) was 0.11% per year (95% CI 0.10-0.12), and between 2004 and 2019 there was a deceleration (APC = 0.04% per year, 95% CI 0.03%- 0.05%). There is great heterogeneity among the countries of the region. Correlation between these two variables was 0.52 for 1990 and 2019. When separated into HDI groups, the correlation varied in the direction of the association and its magnitude, typifying an effect modification known as Simpson's Paradox.ConclusionsHuman development factors may be important for assessing variation in cancer mortality on a global scale. Studies that assess the social and -economic contexts of countries are necessary for robust evaluation and provision of preventive, diagnostic and curative services to reduce cancer mortality in Latin America

Trends in Radiation Therapy among Cancer Survivors in the United States, 2000-2030.

Background: Although the number of cancer survivors has increased substantially over the past several decades, the composition of survivors treated with radiotherapy is not well defined. Radiotherapy carries unique long-term toxicity risks for cancer survivors. This study describes the current estimates and future projections of the epidemiology of 5-year cancer survivors who receive radiation therapy.Methods: We used cancer incidence and survival data from the Surveillance, Epidemiology, and End-Results (SEER) database linked to U.S. Census data to estimate the number of 5-year cancer survivors treated with radiation between 2000 and 2030. Future projections assumed continuing incidence and survival trends based on historical rates.Results: In 2016, there were an estimated 3.05 million cancer survivors treated with radiation, accounting for 29% of all cancer survivors. The number of radiation-treated cancer survivors is projected to reach 3.38 million by 2020 and 4.17 million by 2030. In 2016, breast (40%) and prostate cancer (23%) composed the majority of radiation-treated survivors, followed by head and neck cancer (5.8%), lymphoma (5.6%), uterine (3.9%), and rectal cancer (3.8%). The percentage of 70 years or older radiation-treated survivors steadily increased between 2000 and 2030.Conclusions: The next several years are projected to see a large increase in the number of cancer survivors treated with radiation.Impact: This group of cancer survivors has unique needs given the long-term risks of radiation, and increased research and awareness are required to optimize health of this growing population. Cancer Epidemiol Biomarkers Prev; 26(6); 963-70. ©2017 AACR

Psychological Impact and Coping Strategies of Hispanic Parents of Children with Cancer: A Qualitative Study

Throughout the cancer trajectory, parents of childhood cancer survivors (CCSs) may experience mental and social challenges requiring continual adaptation to cancer-induced stress. Using Lazarus and Folkman's Transactional Model of Stress and Coping framework, this qualitative study aimed to describe Hispanic parents' psychological health and explore their coping strategies. Purposive sampling was used to recruit 15 Hispanic caregivers from a safety-net hospital in Los Angeles County. To be eligible, participants had to be: the primary caregiver of a CCS who had completed active treatment, the primary caregiver or child self-identified as Hispanic, and proficient in English or Spanish. The interviews lasted approximately 60 min, were audio-recorded (in English and Spanish), and professionally transcribed. Data were analyzed following a thematic content analysis with deductive and inductive approaches on Dedoose. Participants described high levels of stress and fear when their child was diagnosed with cancer. They also shared experiencing symptoms of social anxiety, post-traumatic stress disorder, and depression. Participants' coping strategies were encompassed by three major themes: problem-focused, emotion-focused, and avoidant coping strategies. Problem-focused coping strategies included self-efficacy, behavioral change, and social support. Emotion-focused coping strategies included religious practices and positive reframing. Avoidant coping strategies included denial and self-distraction. Despite the evident disparities in psychological health for Hispanic parents of CCSs, gaps remain in designing a culturally tailored program to help alleviate the caregiver burden. This study provides insights regarding coping strategies that Hispanic caregivers use to deal with the psychological impact of their child's cancer diagnosis. Our findings also delve into the contextual and cultural factors that impact psychological adjustment