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Abstracts From The 2023 Health Care Systems Research Network (Hcsrn) Annual Conference, Denver, Colorado

Journal of Patient-Centered Research and Reviews

The Health Care Systems Research Network (HCSRN) is comprised of 20 learning health systems with embedded population-based research units. The network’s annual conference serves as a forum for research teams from member institutions to disseminate project findings, explore scientific collaborations, and share insights about conducting research in real-world care delivery settings. Abstracts presented at HCSRN 2023 are published in this issue supplement of Journal of Patient-Centered Research and Reviews, the journal of record for HCSRN’s annual conference proceedings.

Abstracts From The 2022 Health Care Systems Research Network (Hcsrn) Annual Conference

Journal of Patient-Centered Research and Reviews

The Health Care Systems Research Network (HCSRN) is comprised of 20 health systems with embedded research units. The network’s annual conference serves as a forum for research teams from member institutions to disseminate scientific findings, explore new collaborations, and share insights about conducting research in real-world care delivery settings. Abstracts accepted for presentation at HCSRN 2022 are published in this supplement of Journal of Patient-Centered Research and Reviews, the official journal of HCSRN’s annual conference proceedings.

Measuring Cancer Care Experiences Of Aboriginal And Torres Strait Islander People In Australia: Trial Of A New Approach That Privileges Patient Voices, Monica Green, Joan Cunningham, Kate Anderson, Kalinda Griffiths, Gail Garvey

Patient Experience Journal

This study examined a new method for measuring the care experiences of Aboriginal and Torres Strait Islander people with cancer: the Indigenous People’s Experiences of Cancer Care Survey (IPECCS). The study assessed IPECCS’s: 1) performance; 2) ability to elicit information useful for service improvements; and 3) implementation potential. Three participant groups were recruited from five Australian cancer treatment sites: 1) Aboriginal and Torres Strait Islander people with cancer (+/- support person); 2) interviewers; and 3) health services staff. Trained interviewers administered IPECCS to participants with cancer in audiotaped sessions. Paper forms and transcripts were compared to assess performance, and problems/potential …

Full Issue: The International Undergraduate Journal Of Health Sciences, Volume 1, Issue 1, June 2021

International Undergraduate Journal of Health Sciences

The full June 2021 issue (Volume 1, Issue 1) of the International Undergraduate Journal of Health Sciences

Association Of Incident Cancer To Low-Value Care And Healthcare Cost Burden Among Elderly Medicare Beneficiaries, Chibuzo Iloabuchi

Graduate Theses, Dissertations, and Problem Reports

In the United States (US), 25% of healthcare spending is considered wasteful because it is spent reimbursing low-value care. Low-value care is the utilization of healthcare services, medical tests, and procedures that have unclear or no clinical benefit to patients but still exposes them to risk. World-wide, low-value care imposes a significant economic burden on patients, payers, governments, and society. Cancer care among older adults > 65 years is one of the biggest drivers of healthcare expenditure in the US and accounts for nearly 40% of all spending, and low-value care among cancer patients is prevalent and contributes to the financial …

Qualitative Study Of Factors Contributing To Fertility Service Use Among Cancer Survivors Of Reproductive Age In The Us, Angela Rodgers Moore

Electronic Theses and Dissertations

Cancer remains the second leading cause of death in the United States; however, there has been a decline in incidence and mortality due to advances in screening and treatment. Currently 16.9 million survivors are thriving within the United States, and the population of cancer survivors has been projected to grow to 22.2 million by 2030. Although cancer survivors report an increased surge of vitality and vigor, they often face physical, mental, psychosocial, or financial challenges that threaten their quality of life. A late treatment effect of particular concern for cancer survivors of reproductive age that has both physical and psychosocial …

Bystanders’ Perspectives On The Provision Of Informal, Hospital-Based Care To Bedridden Patients With Cancer In Sri Lanka, B. Sunil S. De Silva

Nursing ETDs

Due to the nursing shortage in Sri Lanka, patients need informal caregivers, known as bystanders, to help provide patient care. This study described bystanders’ perspectives on informal, hospital-based care to bedridden patients with cancer in Sri Lanka. In this qualitative descriptive study, 17 bystanders at Apeksa/Cancer Hospital, Sri Lanka, were recruited using snowballing sampling. Data were collected through telephone interviews and analyzed using content and thematic analyses. Findings showed that paid and unpaid bystanders cover all caregiving tasks with minimum interaction with nurses. Unpaid bystanders described the need for same-sex bystanders and additional help with patients’ mobilization and specialized care. …

Patient Navigation And Cancer-Related Care: Policy Solutions To Improve Access To Pennsylvania’S Complex System Of Care, Nirmal Ahuja

Harrisburg University Faculty Works

In Pennsylvania, cancer patients experience disparate cancer-related health outcomes. Patient navigation, a patient-centered evidence-based approach effectively addresses barriers to care, and reduces cancer-related disparities and burden. We performed a literature search with specific inclusion and exclusion criteria to identify literature emanating from the United States which potentially described the development, efficacy and cost effectiveness of patient navigation across the United States and in Pennsylvania. The results from this review signified that, over last two decades there has been a rapid growth in the field of patient navigation programs across the United States which includes the state of Pennsylvania. However, despite …

A Comprehensive Call Center Supporting Safe, Efficient Operations During A Pandemic, Janice P. Finder, Ashlyn Proske, Judy Overton, Elizabeth Comcowich Garcia, Michael Frumovitz

Patient Experience Journal

Research has shown that a comprehensive call center can support a safe, efficient, and quality experience for patients and their families. When a patient receives a cancer diagnosis, the stakes are already high. Add a pandemic to an immunocompromised patient population and fear escalates. In order to accommodate the ever-changing information and ease patients’ anxieties surrounding their cancer diagnoses, it is necessary that an institution be available 24/7 to inform, help navigate systems, and manage symptoms because the emergency room, and many times the clinics, have too many inherent risks.

MD Anderson expanded the hours of operation for askMDAnderson, a …

Hpv Vaccination In Females: The Role Of Primary Health Care And Primary Health Care Providers, Brooke Bouza

Graduate Theses and Dissertations

Two reasons for subpar coverage of the Human papillomavirus (HPV) vaccine are missed clinical opportunities and nonacceptance of the vaccine upon recommendation from a medical provider. The purpose of study one was to examine factors associated with access and adherence to physician’s recommendations in association with HPV vaccine uptake. Data were obtained from National Health Interview Survey (2017). Variables theoretically related to clinical opportunities and adherence to physician’s recommendations were examined in association with HPV vaccine uptake. Univariate logistic regressions were run to determine the associations between the aforementioned variables and uptake of the HPV vaccine. Multinomial logistic regressions were …

Expanding The Capacity Of Rural Cancer Care With Teleoncology, Jason Semprini

Online Journal of Rural Research & Policy

Background: In the United States, 6 of the 25 leading causes of death stem from site-specific cancers, resulting in over 1.7 million deaths annually. Yet, this burden is not evenly distributed. While the incidence of cancer is significantly higher in urban areas, rural regions face higher rates of cancer mortality. Identifying the factors contributing rural cancer disparities can facilitate more effective and feasible policy solutions.’

Problem Definition: Rural Americans are geographically isolated from high-quality cancer services and face systemic barriers to NCI designated comprehensive cancer centers. Given this disparity, rural Americans have failed to fully realize the benefits of expanded …

Paying It Forward: A Cancer Survivor And His Wife Share Their Reflections And Recommendations As A Patient And Caregiver, Justin Sandler

Patient Experience Journal

I grew up in the north suburbs of Chicago and had a relatively normal childhood but not necessarily an easy one. Shortly after graduating from Indiana University, I moved out west and have been working in the entertainment industry ever since. My life has been a beautiful and interesting adventure with twists and turns I could have never predicted.

In 2016 it seemed like everything was really coming together. I had been happily married to my wife and business partner Mary Lou Sandler since 2011, and we had been growing our photography/film production studio for as many years. I was …

Cancer Health Disparities Among African Americans: A Socioecological Approach, Seth M. Spitzley

The Hilltop Review

Research shows that health outcomes are influenced by race or ethnicity, socioeconomic status, education and literacy levels, and the physical environment (U.S. Department of Health and Human Services, 2014). The health statuses of minority groups, such as African Americans, are adversely impacted by inequality (Randall, 2009). In Kalamazoo, Michigan, the leading cause of death for all residents in Kalamazoo County was cancer, where black individuals have the highest death rate among any other racial or ethnic group. That African Americans comprise less than 11% of the population in Kalamazoo County thus suggests that African Americans are disproportionately impacted by cancer …

Evaluation Of A Remote Symptom Assessment And Management (Sam) System For People Receiving Adjuvant Chemotherapy For Breast Or Colorectal Cancer: Mixed Methods Study, Lisa Whitehead, Laura Emery, Deborah Kirk, Diane Twigg, Deborah Brown, Joanna Dewar

Research outputs 2014 to 2021

©Lisa Whitehead, Laura Emery, Deborah Kirk, Diane Twigg, Deborah Brown, Joanna Dewar. Background: The Symptom Assessment and Management (SAM) program is a structured, online, nurse-supported intervention to support symptom self-management in people receiving adjuvant chemotherapy post surgery for breast or colorectal cancer. Objective: The objective of this study was to describe the development, implementation strategy, and evaluation of the SAM system. Methods: The development of the SAM program involved 3 phases. In phase 1, the web app was developed through consultation with consumers and clinicians and of the literature to ensure that the system was evidence-based and reflected the realities …

Factors Influencing Family Burden In Pediatric Hematology/Oncology Encounters, Hannah R. Abrams, Hayden S. Leeds, Heidi V. Russell, Melody B. Hellsten

Journal of Patient-Centered Research and Reviews

Purpose: Caring for a child with cancer or hematologic disease places unique stress on a family unit. Families’ subjective experience of this care-related burden mediates the relationship between cost and health-related outcomes. While financial costs are well described for families of pediatric hematology/oncology patients, it is unclear how cost and other factors each contribute to families’ overall experience of care-related burden. This study identifies and groups the challenges that families report and describes their association with overall reported burden.

Methods: This mixed-methods analysis of a cross-sectional single-center study was conducted via structured, self-administered questionnaire provided to inpatient and outpatient caregivers …

How Have Patients' Experiences Of Cancer Care Been Linked To Survival? A Systematic Review, Saleh A. Alessy, Margreet Lüchtenborg Dr, Elizabeth A. Davies Dr.

Patient Experience Journal

Patient experience of care remains an important indicator of health care quality. Although studies show care experiences are associated with health outcomes for some conditions, the situation for cancer is unclear. New datasets on cancer patients in the US, Canada, and UK linking information on experiences and survival may enable an exploration of any association. This review aimed to identify studies linking any aspect of cancer patients’ experiences to their survival, to inform future analyses. We performed a systematic review using Medline database from January 1998 until March 2018.

The settings included outpatient oncology clinics, primary care, hospitals, and cancer …

Matters Of Trust: Examination Of The Patient-Provider Relationship In Cancer Care, Krista A. Brown

Capstone Experience

Background: The intangible concept of trust is critical in the patient-provider relationship. Cancer patients may experience positive and negative impacts of trust in this relationship to a higher degree due to the inherently serious nature of their disease and the level of dependence upon treatment providers.

Objective: The goal of this study was to compare colorectal cancer patients’ levels of trust in their primary care physician and oncologist, along with examining trust differences associated with demographics and other characteristics.

Methods: Colorectal cancer patients (n=158) treated at Nebraska Medicine and consented into the Integrated Cancer Repository for Cancer Research IRB …

Recent Incidences And Trends Of The Top Five Cancers In Northeast Appalachian Tennessee, Adekunle Oke, Sylvester Olubolu Orimaye, Ndukwe Kalu, Faustine Williams

Appalachian Student Research Forum

Introduction: Cancer is the second leading cause of death in the United States (U.S.), after cardiovascular disease. Although there has been a continuous decline in cancer mortality rates in the U.S. over the past two decades, the Appalachian region, which extends through 13 states and 420 counties in the southeastern part of the U.S., has seen a lower decline in cancer mortality. From 1980-2014, cancer deaths decreased by almost 45%, but cancer mortality rates in rural Appalachia was 36% higher than for urban non-Appalachian counties. In terms of cancer-specific, although breast cancer mortality rates have also decreased significantly nationally, a …

“We Were Learning Together And It Felt Good That Way.” A Case Study Of A Participatory Group Music Program For Cancer Patients, Laurie Sadowski

Patient Experience Journal

Though there are similarities to music therapy, the field of community music in healthcare, while in its infancy, is steadily growing. This case study explored how semi-formal, active music-making can play a role in illness and recovery and provide patients with a sense of voice, connection, and community, and the efficacy of community music programming in a hospital. Six participants began and three participants completed a 6-week music class learning the ukulele. Interpretative Phenomenological Analysis (IPA) was used as a method for data analysis from semi-structured pre-questionnaires, transcribed classes, transcribed post-interviews, and weekly questionnaires from both the participants and the …

Application Of The Misclassification Simulation Extrapolation (Mc-Simex) Procedure To Log-Logistic Accelerated Failure Time (Aft) Models In Survival Analysis, Varadan Sevilimedu

Electronic Theses and Dissertations

Survival analysis is the study of time to event outcomes. Accelerated Failure Time models (AFT) serve as a useful tool in survival analysis to study the time of occurrence of an event and its relation to the covariates of interest. The accuracy of estimation of parameters in a model depends upon the correct measurement of covariates. Considering that perfect measurement of covariates is highly unlikely, it is imperative that the performance of the existing bias-correction methods be analyzed in AFT models. However, certain areas of bias-correction in AFT models still remain unexplored. One of these unexplored areas, is a situation …

Federal Policies And Prescription Drugs, Ali Bonakdar Tehrani

Theses and Dissertations

This dissertation comprises three discrete empirical papers, with an introductory essay that evaluates the impact of different federal policies on prescription drug prices, utilization, and spending. Two main databases are used: (a) Medicaid State Drug Utilization Data and (b) the Medical Expenditure Panel Survey (MEPS) data. These two databases are designed to track Medicaid drug utilization and overall medical use and expenditures, respectively. The variables of interest in this dissertation are prescription drug price, prescription drug use and spending, and overall drug expenditures.

The objective of the first paper (Chapter 2) is to examine whether oncology drug prices have significantly …

A Vision For Using Online Portals For Surveillance Of Patient-Centered Communication In Cancer Care, Hardeep Singh, Neeraj K. Arora, Kathleen M. Mazor, Richard L. Street Jr

Patient Experience Journal

The Veterans Health Administration (VHA) is charged with providing high-quality health care, not only in terms of technical competence but also with regard to patient-centered care experiences. Patient-centered coordination of care and communication are especially important in cancer care, as deficiencies in these areas have been implicated in many cases of delayed cancer diagnosis and treatment. Additionally, because cancer care facilities are concentrated within the VHA system, geographical and system-level barriers may present prominent obstacles to quality care. Systematic assessment of patient-centered communication (PCC) may help identify both individual veterans who are at risk of suboptimal care and opportunities for …

Know Your Value: Negotiation Skill Development For Junior Investigators In The Academic Environment—A Report From The American Society Of Preventive Oncology's Junior Members Interest Group, Allison B. Burton-Chase, Maria C. Swartz, Stephanie A. Navarro Silvera, Karen Basen-Engquist, Faith E. Fletcher, Peter G. Shields

Department of Public Health Scholarship and Creative Works

The American Society of Preventive Oncology (ASPO) is a professional society for multidisciplinary investigators in cancer prevention and control. One of the aims of ASPO is to enable investigators at all levels to create new opportunities and maximize their success. One strategy adopted by ASPO was to develop the Junior Members Interest Group in 1999. The Interest Group membership includes predoctoral fellows, postdoctoral fellows, and junior faculty members who are provided career development and training opportunities (1). Responsibilities of the members of the Junior Members Interest Group include serving on the ASPO Executive Committee and the Program Planning …

Evaluation Of The Nci’S Community Cancer Centers’ Program (Ncccp): Impact On Disparities In Quality Of Cancer Care, Michael T. Halpern, Pamela Spain, Debra J. Holden, Andrew K. Stewart, Erica J. Mcnamara, Greer Gay, Steven B. Clauser, Irene Prabhu Das

Journal of Health Disparities Research and Practice

This study examined the effects of the NCCCP pilot on breast or colon cancer quality of care for patients from underserved populations and those treated at disparities-focused hospitals (NCCCP sites having fewer oncology resources or in communities with greater proportions of underserved populations). Data on five quality of care measures were collected using the Commission on Cancer’s Rapid Quality Reporting System. Following NCCCP initiation, we observed improvements in all five quality of care measures. There were similar quality of care improvements for Black vs. White patients, privately insured vs. Medicaid or uninsured patients, and men vs. women. Patients treated at …

Learning What High Quality Compassionate Care Means For Cancer Patients And Translating That Into Practice, Fiona Mckenzie, Katherine Joel, Charlotte Williams, Kathy Pritchard-Jones Professor

Patient Experience Journal

In 2010, UCLPartners, a partnership of health care providers and universities in North Central London, began a collaboration with local commissioners that aimed to think about cancer care and diagnosis differently. Understanding that a good patient experience can only be delivered by putting patients first and working together along their journey from symptoms to recovery, we brought clinical leaders together with patients to think about how to improve outcomes for patients, outside institutional barriers. From the very beginning this new network, an integrated cancer system, focused on understanding what mattered most to patients and organising how it worked and how …

Pain Management In Nursing Home Residents With Cancer And Dementia With And Without Hospice Services, Todd Bryant Monroe

Theses and Dissertations (ETD)

Aims: We sought to identify differences in pain management between two groups; nursing home residents with malignant cancer and dementia with and without hospice services.

Methods: Decedent records from 2003-2009 were assessed for diagnosis of dementia and cause of death as cancer. Ten malignant cancer diagnoses were determined a priori from the CDC 2004 data on the top 10 malignant cancers for all races and genders. Fifty-five decedents from 10 nursing homes were included in the final sample. Four instruments were used: Minimum Data Set (MDS) a standardized assessment tool required of most U.S. nursing homes. A large …

Explaining The Race Difference In Prostate Cancer Stage At Diagnosis, Beth A. Jones, Wen-Liang Liu, Andre B. Araujo, Stanislav V. Kasl, Stephanie A. Navarro Silvera, Hosanna Soler-Vila, Mary G.M. Curnen, Robert Dubrow

Department of Public Health Scholarship and Creative Works

Prostate cancer is the most frequently diagnosed cancer in males in the United States, accounting for an estimated 186,320 new cases in 2008. There are striking racial or ethnic differences in prostate cancer incidence and mortality rates in the United States, with Black males 1.6 times more likely to be diagnosed and 2.4 times more likely to die with prostate cancer than Whites. The stage at diagnosis is a key prognostic factor for prostate cancer survival, with African-Americans generally diagnosed at a more advanced stage. To identify factors that explain the race-stage disparity in prostate cancer, we conducted a population-based …

Cancer Disparities Among American Indians And Alaska Natives, Lisa M. Lines

Lisa M. Lines

The burden of cancer on AIAN patients is a complicated one. The low incidence rates among AIANs may be more a reflection of the low screening rates than a true lack of incident cancers in this population, and while death rates are related to incidence, 5-year survival rates are more related to stage at detection and receipt of treatment. The cancer burden is more severe for AIAN patients in part because of barriers to access, including financial, cultural, and geographic factors. Although some efforts have been made to address these disparities, a critical lack of studies and data hampers efforts …

Intake Of Coffee And Tea And Risk Of Ovarian Cancer: A Prospective Cohort Study, Stephanie A. Navarro Silvera, Meera Jain, Geoffrey R. Howe, Anthony B. Miller, Thomas E. Rohan

Department of Public Health Scholarship and Creative Works

There is some evidence from case-control studies that coffee consumption might be positively associated with ovarian cancer risk, whereas the epidemiologic evidence regarding tea consumption and ovarian cancer is inconsistent. To date, there have been few prospective studies of these associations. Therefore, we examined ovarian cancer risk in association with both coffee and tea intake in a prospective cohort study of 49,613 Canadian women enrolled in the National Breast Screening Study (NBSS) who completed a self-administered food frequency questionnaire between 1980 and 1985. Linkages to national mortality and cancer databases yielded data on deaths and cancer incidence, with follow-up ending …

Need For Cognition And Message Complexity In Motivating Fruit And Vegetable Intake Among Callers To The Cancer Information Service, Pamela Williams-Piehota, Judith Pizarro, Stephanie A. Navarro Silvera, Linda Mowad, Peter Salovey

Department of Public Health Scholarship and Creative Works

This field experiment examined the impact of an individual's need for cognition (NFC; the tendency to enjoy thinking deeply about issues), complex versus simple messages, and the interaction of NFC and message type on encouraging fruit and vegetable consumption. Callers to the Cancer Information Service of the National Cancer Institute (N = 517) were asked to participate in the experiment at the end of their call. Individual NFC was assessed, and participants were assigned randomly to receive a telephone message promoting fruit and vegetable consumption that was either complex and multifaceted or simple and straightforward. Similarly constructed brochures were …