Illness-related Death Research Articles

National Survey of Oncologists' Knowledge, Attitudes, and Practice Behaviors: Caring for Cancer Patients Experiencing Incarceration.

Cancer is the leading cause of illness-related death in state prisons in the United States. The experiences of physicians providing oncological care to individuals experiencing incarceration are underexplored. The study aims were to evaluate knowledge, attitudes, and practices of oncologists caring for cancer patients who are incarcerated. An online survey was distributed to a random sample of 150 oncologists from the American Society of Clinical Oncology and the American Society for Radiation Oncology from July 2020 to December 2021. Statistical analyses included two proportion Z-test, Fisher's exact test, Kruskal-Wallis test, and Cramer's V to estimate factors associated with attitudes and barriers to care. Of the 55 respondents (36.7% response rate), 21 were medical oncologists and 34 were radiation oncologists. Academic center oncologists were more likely to report caring for incarcerated patients than community or private practice oncologists (p = .04). Most (53%) incorrectly reported "heart disease" as the leading cause of death, as opposed to "cancer" (15% identified correctly). Oncologists practicing at both academic and community centers were more likely to report care coordination barriers than oncologists at academic or community centers (p < .01). We identified potential barriers in caring for incarcerated cancer patients. Future studies should explore ways to improve care coordination between oncology teams and prisons.

Palliative Care among Incarcerated Populations: A National Survey of Radiation Oncologists' Perspectives and Experiences

Incarcerated individuals carry a high disease burden, including cancer which is now the leading cause of illness-related deaths. Disparities in access to screening, care coordination, timely treatment, and comorbidities have been identified as contributors to late-stage diagnosis and poor cancer-related outcomes. As the first of its kind, we assessed oncologists' knowledge, attitudes, and practices (KAP) in providing cancer care to incarcerated patients. A KAP survey on incarcerated patients with cancer was developed and piloted with volunteer radiation oncologists. Following IRB approval, the KAP survey questionnaire included physicians' demographics and Likert scale questions on practice patterns and experiences caring for incarcerated patients. The survey was distributed to 150 medical and radiation oncologists randomly selected from national societies' membership directories (ASTRO and ASCO). Data collection took place from 7/2020-12/2021, and descriptive statistics were used for analysis. Of the 75 surveyed radiation oncologists (RO), 34 responded with a response rate of 45% among the specialty cohort. Most RO (59%) incorrectly identified "heart disease" as the leading cause of death among incarcerated patients, followed by "substance use disorder" (19%); only 9% correctly reported "cancer" as the leading cause of death. Most RO reported caring for a patient who underwent cancer treatment while incarcerated (70%) or recently incarcerated (within 6 months of release; 63%). 38% (n = 10/26) indicated incarcerated patients presented with delayed diagnosis at consultation. 58% (n = 14/24) reported that ≥50% of their patients who were incarcerated presented with cancer-related pain, and 82% (n = 18/22) indicated that ≥50% of their patients had a history of opioid use disorder. Yet 38% (n = 9/24) reported their clinic adequately treated cancer-related pain for incarcerated patients, while 54% (n = 13/24) reported their clinic needed improvement. Most radiation oncologists have experience providing cancer care for incarcerated patients and acknowledge disparities in later-stage disease presentation in this patient population. Interventions are needed to ensure cancer-related pain is appropriately managed among patients experiencing incarceration. Further studies are required to understand practice patterns and ensure equitable cancer treatment for carceral populations.

Inequalities in Cancer Stage at Diagnosis Among Incarcerated Individuals Undergoing Radiation Therapy at a Large Safety-Net Hospital

There is a dearth of data on cancer care in the incarcerated population, despite being the leading cause of illness-related death in United states' prisons. We retrospectively reviewed the demographic and clinicopathologic characteristics of incarcerated individuals who received radiation therapy at a large safety-net hospital. Following institutional review board approval, we identified 80 incarcerated patients who presented for radiation therapy between January 2003 and May 2019. Descriptive statistics on the patients, tumor types and stage, treatment factors, and follow-up rates were analyzed. 80 individuals with 82 cancer diagnoses presented for radiation oncology consultation over the study period. The median age was 54 years (range, 46-64). Patients of White, Black, and "other" races comprised 61.3% (n=49), 28.8% (n=23), and 10% (n=8), respectively. Most patients were male (n=75, 93.8%) and English speakers (n=76, 95%). Moreover, 50% (n=40) had a substance use disorder history and 75% (n=60) had a smoking history. The three most common cancer types were prostate (n=12, 14.6%), gastrointestinal (n=14, 17.1%), thoracic (n=17, 20.7%), and head and neck (n=21, 25.6%). The distribution of tumor stage (AJCC) was I (n=12, 14.6%), II (n=12, 14.6%), III (n=14, 17.1%), IV (n=38, 46.3%), and unknown/unavailable (n=6, 7.3%). Of the cohort, 65 patients with 66 cancers (80.5%) received radiation. Among them, the 6-month, 1-year, and 5-year follow-up rates were 41.5%, 27.7%, and 3.1%, respectively. Subset analysis limited to stage I-III patients (n=30) revealed 6-month, 1-year and 5-year follow-up rates of 41.9%, 22.6%, and 3.2%, respectively. This study highlights inequalities in cancer stage at diagnosis among a vulnerable patient population that is largely excluded from clinical research. Majority of the incarcerated patients presented with stage III and IV cancers and have poor follow up rates even among those with early-stage disease. Efforts to understand and mitigate persistent health inequalities among incarcerated patients are warranted.

Examining public stigma and expectations of grief following medical aid and dying in the US: A vignette-based experiment

AbstractObjectivesFamilies bereaved following Medical Aid in Dying (MAID)-related death express concerns about public stigma. As access to MAID expands, research examining MAID is needed, including understanding stigma toward family members. This study examines if stigmatization exists toward bereaved individuals whose family member utilized MAID at differing ages and assess if expectations of grief differ between bereaved individuals whose family member utilized MAID compared to bereaved individuals whose family member died of an illness.MethodsThis study utilized a randomized, between-groups, vignette-based experiment to test the effects of cause of death (MAID vs. illness-related death) and age (28, 38, 70, and 80 years) of the deceased on indicators of public stigma. Participants (N = 428) were recruited from mTURK (Mage = 42.54; SDage = 16.50).ResultsAnalyses showed a statistically significant interaction between age and the mode of death (F(7, 400), p = 0.001, $\eta _{\rm p}^2$ = 0.06) and the main effect for age (F(5, 401), p = 0.004, $\eta _{\rm p}^2$ = 0.04) on expectations of grief, whereas emotional reactions and wanting social distance were not significant (p &gt; 0.05). Participants expected more maladaptive grief among family members of 28- and 70-year-olds who died of illness compared to 28- or 38-year-olds who utilized MAID [28-year-old (M = 44.12, SD = 12.03) or 70-year-old (M = 44.32, SD = 10.29) illness-related death vs. 28-year-old (M = 39.3, SD = 11.56; p = 0.01) or 38-year-old (M = 38.71, SD = 11.56; p = 0.007) MAID-related death].Significance of resultsFindings suggest that direct stigma does not exist toward family members of individuals engaging in MAID. The American public may expect that family members of young individuals who utilize MAID are accepting of the death and expect them to experience fewer maladaptive grief symptoms. Future research should investigate differences in bereavement outcomes based on age of bereaved caregivers of individuals engaging in MAID.

REVIEW OF DNA VACCINE APPROACHES AGAINST THE PARASITE TOXOPLASMA GONDII.

Toxoplasma gondii is an apicomplexan parasite that affects both humans and livestock. Transmitted to humans through ingestion, it is the second-leading cause of foodborne illness-related death. Currently, there exists no approved vaccine for humans or most livestock against the parasite. DNA vaccines, a type of subunit vaccine which uses segments of the pathogen's DNA to generate immunity, have shown varying degrees of experimental efficacy against infection caused by the parasite. This review compiles DNA vaccine efforts against Toxoplasma gondii, segmenting the analysis by parasite antigen, as well as a review of concomitant adjuvant usage. No single antigenic group was consistently more effective within in vivo trials relative to others.

"Parenting Beyond the Veil": The Continued Parenting Relationship After a Child's Death Due to Cancer.

Background: Childhood cancer is the leading cause of illness-related death, leaving thousands of parents to experience bereavement. This article presents select findings about the nature of the continued parenting relationship, which is an essential theme of the parental bereavement experience. Method: Heideggerian phenomenology provided the philosophical underpinnings of this study, which aimed to describe the lived experience of bereaved parents who experienced the death of a child due to cancer. Van Manen's (1997) method guided data collection and analysis. Six parents participated in interviews to share what it has been like for them since their child's death. The researcher wrote analytic memos, documented detailed field notes, and used a member checking process to ensure trustworthiness of findings. Results: A structure of the lived experience of parental bereavement emerged, which included the essential theme of the continued parenting relationship. The parenting relationship continues throughout a parent's lifetime in spite of the child's physical absence, albeit in a different manner. This different nature of parenting is known as parenting beyond the veil. Bereaved parents continue to parent beyond the veil by engaging in meaningful activities, seeking activities that strengthen a deep connection with the child, and being open to comforting signs that enhance their continued relationship. Discussion: Parents believe sharing their experience can help nurses and other professionals understand the importance of their continued parenting relationship and their need to parent beyond the veil so that they can provide high quality care to bereaved parents in the future.

Accepting the unacceptable? Exploring how acceptance relates to quality of life and death anxiety in a cancer population

Background: Quality of life is a core concern for cancer patients, which can be negatively affected by illness-related death anxiety; yet understanding of how to appropriately target psycho-oncological interventions remains lacking. We aimed to explore experiential acceptance in cancer patients, and whether acceptance – as an alternative to avoidant coping – was related to and predictive of better quality of life and death anxiety outcomes. Methods: We used a longitudinal, quantitative design with a follow-up after three months. Seventy-two participants completed a questionnaire-battery measuring illness appraisals, acceptance and non-acceptance coping-styles, quality of life, and death anxiety; 31 participants repeated the battery after three months. Results: Acceptance was an independent explanatory and predictive variable for quality of life and death anxiety, in the direction of psychological health. Acceptance had greater explanatory power for outcomes than either cancer appraisals or avoidant response styles. Avoidant response styles were associated with greater death anxiety and poorer quality of life. Conclusions: The findings support the role of an accepting response-style in favourable psychological outcomes, identifying a possible target for future psychological intervention. Response styles that might be encouraged in other therapies, such as active coping, planning, and positive reframing, were not associated with beneficial outcomes.

Accepting the unacceptable? Exploring how acceptance relates to quality of life and death anxiety in a cancer population

Background: Quality of life is a core concern for cancer patients, which can be negatively affected by illness-related death anxiety; yet understanding of how to appropriately target psycho-oncological interventions remains lacking. We aimed to explore experiential acceptance in cancer patients, and whether acceptance – as an alternative to avoidant coping – was related to and predictive of better quality of life and death anxiety outcomes. Methods: We used a longitudinal, quantitative design with a follow-up after three months. Seventy-two participants completed a questionnaire-battery measuring illness appraisals, acceptance and non-acceptance coping-styles, quality of life, and death anxiety; 31 participants repeated the battery after three months. Results: Acceptance was an independent explanatory and predictive variable for quality of life and death anxiety, in the direction of psychological health. Acceptance had greater explanatory power for outcomes than either cancer appraisals or avoidant response styles. Avoidant response styles were associated with greater death anxiety and poorer quality of life. Conclusions: The findings support the role of an accepting response-style in favourable psychological outcomes, identifying a possible target for future psychological intervention. Response styles that might be encouraged in other therapies, such as active coping, planning, and positive reframing, were not associated with beneficial outcomes.

Improving care for the overlooked in oncology: incarcerated patients.

Physicians and public health practitioners often view health disparities through the eyes of birthplace, race, sex, economic class, sexuality, religion, or neighbourhood, or a combination of these. In the process, patients who are incarcerated (too often referred to as prisoners rather than patients) 1 Tran NT Baggio S Dawson A et al. Words matter: a call for humanizing and respectful language to describe people who experience incarceration. BMC Int Health Hum Rights. 2018; 18: 41 Crossref PubMed Scopus (31) Google Scholar are overlooked as a profoundly medically vulnerable population with substantial disparities in health care and their health is an understudied public health crisis. 2 Ahalt C Wang EA Williams B State of research funding from the National Institutes of Health for Criminal Justice Health Research. Ann Intern Med. 2015; 163: 240-241 Crossref PubMed Google Scholar Although a third of illness-related deaths in US state prisons are due to cancer, and this mortality rate is double for incarcerated male patients, 3 Noonan M Mortality in state prisons, 2001–2014 – statistical tables. US Department of Justice, Office of Justice Programs, Bureau of Justice Statistics. https://www.bjs.gov/content/pub/pdf/msp0114st.pdfDate: December, 2016 Date accessed: September 5, 2019 Google Scholar few recommendations exist to guide oncologists in how to address the unique challenges of providing ethically competent and high quality cancer care for incarcerated patients. Correction to Lancet Oncol 2019; 20: 1342–44Oladeru OT, Perni S, Williams B. Improving care for the overlooked in oncology: incarcerated patients. Lancet Oncol 2019; 20: 1342–44—In this Comment, the formatting in the panel was incorrect. This correction has been made to the online version as of Dec 2, 2019. Full-Text PDF

Abstract 4151: Siglec-15 is a novel immunomodulatory effector of adaptive immune evasion in acute lymphoblastic leukemia

Abstract Despite advances in therapy for acute lymphoblastic leukemia (ALL), it remains a leading cause of illness-related death in children and has poor long term disease-free survival and prognosis in recurrence in adults. Recent developments in immune-based therapies, such as CAR T cells, have shown great promise, but immune evasion mechanisms of leukemia remain poorly understood, and alternative strategies to engage the immune system are needed. Our group has characterized a role for calcineurin (CN) as a driver of a potent immune escape mechanism in an aggressive murine model of BCR-ABL+ ALL. We performed RNA-seq analysis of control and CN-deficient ALL cells to identify downstream mediators of this effect. Siglec-15 emerged as one of the most differentially expressed genes, being preferentially downregulated in the more immunogenic CN-deficient cells. The role of this Siglec-family immunomodulator is yet unstudied in the context of leukemia and could represent a novel mechanism for immune evasion. We first validated lower expression of Siglec-15 in CN-deficient leukemia cells by RT-qPCR. We next mined publicly available databases, which revealed higher expression of Siglec-15 in primary B-ALL and AML leukemias as compared to normal PBMCs, as well as in post-chemotherapy MRD samples as compared to at-diagnosis samples. Western blot analysis of human leukemia cell lines demonstrated upregulation of Siglec-15 expression in B-ALL, some AML, as well as DLBCL, as compared to normal PBMCs. To determine if Siglec-15 mediates immune evasion in vivo, we knocked down Siglec-15 in the murine model of BCR-ABL+ ALL, which resulted in rapid suppression of the leukemia following engraftment in immunocompetent mice, an effect lost in immunocompromised counterparts. Preliminary studies with cells in which Siglec-15 was knocked-out using CRISPR/Cas9 revealed similar results. Importantly, Siglec-15-deficient cells do not have any changes in proliferation or susceptibility to DNA damage-induced apoptosis. To address the capacity for therapeutic targeting of Siglec-15, mice with parental leukemia were treated with a monoclonal blocking antibody against Siglec-15, yielding an overall reduction in leukemic burden and prolonged survival. Taken together, these results suggest that Siglec-15 is a novel immunomodulatory effector and has a therapeutically exploitable role in immune evasion of ALL. Citation Format: Claire Pillsbury, Jairo A. Fonseca, Jodi Dougan, Lori Gardner, Jennifer Rabe, Christy Gearheart, Chris C. Porter. Siglec-15 is a novel immunomodulatory effector of adaptive immune evasion in acute lymphoblastic leukemia [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2019; 2019 Mar 29-Apr 3; Atlanta, GA. Philadelphia (PA): AACR; Cancer Res 2019;79(13 Suppl):Abstract nr 4151.

Measuring Mercy: Protecting Patient Discretion in Terminal Care Under the 14th Amendment

The Supreme Court has repeatedly upheld the constitutionality of assisted suicide statutes. These statutes are almost exclusively used to deter physicians from administering life-ending medical treatment, such as physician-assisted suicide and euthanasia. However, the Court has yet to address the use of physician-assisted suicide or euthanasia as purely palliative measures. This Article proposes that palliative care is a fundamental right because it is the sole medical benefit available to terminal patients. Furthermore, in cases of intractable pain, this right includes the ability of the patient to exercise their discretion in seeking life-ending palliation through physician-assisted suicide or euthanasia. Under circumstances of intractable pain, inducing death is medically and ethically appropriate to prevent prolonged and intolerable patient suffering prior to illness-related death. Statutes prohibiting life-ending palliation violate the Fourteenth Amendment by (1) denying terminal patients the ability to seek palliative care, thereby compelling them to endure severe physical pain, and (2) facilitating targeted prosecution against similarly situated palliative physicians who administer life-ending care to terminal patients.

Neuropsychiatric aspects of paediatric brain tumours: an update

Abstract The diagnosis and treatment of children and adolescents with cancer has a tremendous and lasting effect on the patients, their families, and other individuals in their social network. It carries a host of psychological and neurobehavioral ramifications, from questions of mortality to changes in levels of functioning in multiple domains. Childhood cancer remains the leading cause of illness-related death in childhood, but significant advances in survival have been made in the past 40 years. This review looks at the neuropsychiatric presentations, psychosocial and treatment-related issues that arise in children with brain tumors.

Constitutive β-catenin signaling dysregulates DC differentiation resulting in inability to control microbial infection (INM2P.418)

Abstract The protozoan Toxoplasma gondii is the second most common cause of foodborne illness-related deaths in the US and can be fatal to infants and immunocompromised patients. Dendritic cells (DC) are required for immunity to T. gondii, and recently, DC Wnt/β-catenin signaling has been suggested to control DC tolerance in the intestine. However, the role of this signaling axis in peripheral DC development and function is unknown. Using transgenic mice expressing DC-specific constitutively active β-catenin (DCEx3-/-), we surprisingly found that the splenic CD8α DC and the developmentally related peripheral CD103 DC compartment were significantly expanded relative to corresponding populations in wild-type (WT) animals. Splenic CD8α DC are a source of IL-12, and infection of DCEx3-/- mice with T. gondii resulted in rapid lethality associated with proinflammatory cytokine overproduction. Transcription factor Irf8 drives CD8α and CD103 DC differentiation, and flow cytometric analysis revealed strong upregulation of Irf8 in CD8α DC upon β-catenin stabilization. Confirming this, WT CD8α+Irf8+ DC displayed higher β-catenin levels relative to splenic CD8- DC. Together, our data show that β-catenin targets Irf8 during DC development, resulting in expansion of CD8α DC in the spleen and CD103 DC in the periphery. This is the first study to implicate β-catenin in DC subset differentiation and provides novel insight into the complex transcriptional network of DC development.

Preventing Foodborne Illness: Campylobacteriosis

Over 800,000 cases per year of diarrheal disease in the United States were linked to Campylobacter, being ranked No. 4 in the pathogens causing foodborne illnesses. Campylobacter is also responsible for 15% of foodborne illness-related hospitalizations, and 6% of foodborne illness-related deaths. This revised 5-page fact sheet was written by Soohyoun Ahn, Renée M. Goodrich-Schneider, and Keith R. Schneider, and published by the UF Department of Food Science and Human Nutrition, July 2012. FSHN032/FS098: Preventing Foodborne Illness: Campylobacteriosis (ufl.edu)

Clinical Features of Patients With Severe Altitude Illness in Nepal

Trekking in Nepal is a popular adventure travel activity involving more than 80,000 people of all ages annually. This study focuses on the demographic characteristics and clinical course of altitude illness patients evacuated to Kathmandu and estimates the rates of evacuation in different regions of Nepal. During the years 1999 to 2006, all patients who presented with altitude illness to the CIWEC clinic in Kathmandu were evaluated and included in the study if the final diagnosis was compatible with high-altitude cerebral edema (HACE), high-altitude pulmonary edema (HAPE), or acute mountain sickness (AMS). Altitude illness-related deaths were reported according to death certificates issued by selected embassies in Kathmandu. A total of 406 patients were evaluated, among them 327 retrospectively and 79 prospectively. HACE was diagnosed in 21%, HAPE in 34%, combined HAPE and HACE in 27%, and AMS in 18%. Mean patient age was older than trekker controls (44 +/- 13.5 vs 38.6 +/- 13.9 y, p < 0.0001). Everest region trekkers were more likely to be evacuated for altitude illness than trekkers in other regions. The estimated incidence of altitude illness-related death was 7.7/100,000 trekkers. Most altitude illness symptoms resolved completely within 2 days of evacuation. Altitude illness that results in evacuation occurs more commonly among trekkers in the Everest region and among older trekkers. The outcome of all persons evacuated for altitude illness was uniformly good, and the rate of recovery was rapid. However, the incidence of altitude illness-related death continued to rise over past decade.

Illness, Death, and Macronutrients: Adequacy of Rural Mozambican Household Production of Macronutrients in the Face of HIV/AIDS

As the public sector and civil society develop intervention programs to deal with the HIV/ AIDS epidemic, there has been an increasing emphasis on the relationship between nutrition and the disease. Drug interventions may be ineffective, and the progression from HIV infection to full-blown AIDS may be accelerated without adequate nutrition. Mozambique is still fighting an increasing prevalence rate of HIV including in rural areas. Rural households in Mozambique rely heavily on their own agricultural production for the basic macronutrients. To evaluate the extent to which household agricultural production of basic staples meets overall household needs for major macronutrients, comparing households affected and not directly affected by HIV/ AIDS and other major illnesses over two time periods. Methods. This research analyzes nationally representative panel data from rural household surveys conducted in 2002 and 2005 to evaluate whether households that have suffered the chronic illness or illness-related death of prime-age adult members (15 to 49 years of age) are more vulnerable to macronutrient gaps. Households in the South and in the North with a male illness or death in 2002 produced significantly less macronutrients from crops in 2005 than nonaffected households. These households also had significantly lower income per adult equivalent. Mortality or illness from HIV/AIDS affects the ability of agricultural households dependent on own-food production to produce macronutrients. Interventions to improve access to food may be needed for affected households, particularly in light of their inability to recover over time. More analysis is needed to understand income sources, crop diversification, and access to macronutrients through the market.

Abnormal allometric size of vital body organs among sudden infant death syndrome victims.

Sudden infant death syndrome (SIDS) victims are difficult to describe physically because they seem outwardly indistinguishable in nearly all characteristics from infants (alive or dead) of comparable chronological age. Relative (allometric) size of vital organ and body weights has not been examined among SIDS victims. In the present study, autopsy organ and body weights for 152 SIDS deaths (1-12 months) were compared with the results of 115 controls that were trauma or illness-related death (0.25-12 months). A pattern of abnormal relative size in vital organs (brain, heart, liver, and kidney) was revealed. In allometric regressions, increase in the weights of the organs relative to total body weight among SIDS victims were approximately three times the increase among controls in the first year of life. This finding indicates a disturbance of normal patterns of vital organ size of SIDS victims that is of unknown etiology. Am. J. Hum. Biol. 12:382-387, 2000. Copyright 2000 Wiley-Liss, Inc.

The use of rationalization and denial to reduce accident-related and illness-related death anxiety

Subjects read stories depicting the death of an individual through either an accident or a terminal illness. The subjects then answered questions designed to measure the extent to which various defense mechanisms were elicited by the stories. In Experiment 1, the subjects used rationalization more than denial or repression after reading the accident story, but they used all three defenses with equal magnitude after the illness story. In Experiment 2, rationalization was again used more than denial after the accident story, and the two defenses were used with similar magnitude after the illness story. There may be specific trauma-defense relationships whose existence depends on specific characteristics of both the type of trauma and the type of defense mechanism.