Preface: Experiencing Cancer in Appalachian Kentucky

Connected cancer care is of increasing importance in light of the COVID-19 pandemic. The Linking & Amplifying User-Centered Networks through Connected Health (L.A.U.N.C.H.) Collaborative in Appalachian Kentucky has pioneered a new roadmap for equipping communities with the transformative power of broadband to innovate around the future of cancer care and to better scale their ideas. The roadmap involves reaching across disciplines, including public health, anthropology, telecommunications, and user-centered design. The goal is to leverage connectivity and cancer communication research and practice to make a real difference for patients and families

Seeking Cancer Information: An Appalachian Perspective

There are noted disparities by ethnicity, race, age, gender, and socioeconomic status in the reported use of and access to cancer information. Missing from this list of variables that predict these disparities are specific geographic locales, such as Appalachia, a region recognized as a medically underserved, “special population”. Through a secondary analysis of NCI’s 2003 HINTS dataset, we are able to describe the cancer information-seeking behaviors of Appalachians as compared to non-Appalachians with a focus on actual versus preferential information-seeking behaviors, information-seeking experiences, and demographics. In general, Appalachians and non-Appalachians do not significantly differ in their cancer information-seeking behaviors and experiences. However, there are subtle, important differences related to the use and trust of health care providers and the Internet for cancer information. It is important to understand the effects that geography has not only on health outcomes, but also on access to and use of cancer information

HPV Vaccination Among Young Adult Women: A Perspective From Appalachian Kentucky

INTRODUCTION: Few studies have assessed barriers to human papillomavirus (HPV) vaccination uptake and adherence, particularly among women of Appalachian Kentucky, a population with higher rates of cervical cancer, lower rates of HPV vaccination, and lower socioeconomic status compared with the rest of the nation. The objective of this study was to address women\u27s reasons for declining the HPV vaccine and, among women who initiated the vaccine series, barriers to completion of the 3-dose regimen. METHODS: We recruited 17 women aged 18 to 26 from a Federally Qualified Health Center who participated in in-depth, semistructured telephone interviews. All interviews were audio-recorded and transcribed verbatim; analysis of the interview transcripts was an iterative process conducted by all 3 authors. RESULTS: We identified 3 primary barriers: 1) a knowledge gap wherein women are both uninformed and misinformed about cervical cancer, HPV, and the HPV vaccine, all of which affect vaccination behaviors; 2) environmental and tangible barriers (transportation and prioritizing health over other responsibilities such as child care, work, and school); and 3) ambiguous information sources, which contribute to misinformation and subsequently affect vaccination decisions. CONCLUSION: Health professionals should use clear and purposeful communication about how cervical cancer develops, the purpose and safety of the HPV vaccine, and the necessity of completing the 3-dose series. Health promotion campaigns and services tailored for young women in Appalachian Kentucky that focus on increasing knowledge and eliminating barriers are needed

Cancer Information-Seeking Experiences: The Implications of Hispanic Ethnicity and Spanish Language

BACKGROUND: Strategies to support cancer information-seeking among Hispanics are needed. METHODS: We analyzed data from the 2005 Health Information National Trends Survey (HINTS) to explore cancer information-seeking experiences among respondents according to ethnicity and language of interview. RESULTS: Over 80% of Spanish-speaking Hispanics had never looked for cancer information. Compared to English-speaking respondents, Spanish-speaking Hispanics who sought cancer information indicated their search took a lot of effort (67%), was hard to understand (54%), and frustrating (42%). Spanish-speaking Hispanics noted minimal confidence in obtaining cancer information. CONCLUSIONS: Language and cultural differences must be considered in the design, implementation, and dissemination of cancer information

Bridging the Critical Chasm Between Service and Research: The Cancer Information Service’s Collaboratory

As a collaboratory for cancer communication and education research, the National Cancer Institute\u27s (NCIs) Cancer Information Service (CIS) is in an ideal position to bridge the critical chasm that exists between service and research. This article describes the CIS\u27 current research program as well as the CIS Research Agenda launched in 2005. The CIS\u27 progress in developing and supporting recently funded studies that address this agenda is detailed. The unique resources and opportunities available to researchers, public health practitioners, health care providers, and community-based organizations interested in developing collaborative cancer communication and cancer education studies with the CIS are identified and described and an invitation to collaborate is extended

Disparities in Quality of Life by Appalachian-Designation among Women with Breast Cancer

Introduction: Few studies have examined the association of geography and quality of life (QOL) among breast cancer patients, particularly differences between Appalachian and non-Appalachian Kentucky women, which is important given the cancer and socioeconomic disparities present in Appalachia. Purpose: The purpose of this study was to determine whether women with breast cancer residing in Appalachian Kentucky experience poorer health outcomes in regards to depression, stress, QOL, and spiritual wellbeing, relative to those living in non-Appalachian Kentucky after adjusting for demographic, socioeconomic, and health-related factors. Methods: Women, aged 18–79, recruited from the Kentucky Cancer Registry between 2009 and 2013 with an incident, primary breast cancer diagnosis completed a telephone interview within 12 months of diagnosis. In this cross-sectional study, sociodemographic characteristics and mental and physical health status were assessed, including number of comorbid conditions, symptoms of depression and stress, and QOL. Results: Among 1245 women with breast cancer, 334 lived in Appalachia and 911 in non-Appalachian counties of Kentucky. Appalachian breast cancer patients differed from non-Appalachian patients on race, education, income, health insurance status, rurality, smoking, and stage at diagnosis. In unadjusted analysis, Appalachian residence was associated with having significantly more comorbid conditions, more symptoms of stress in the past month, and lower Functional Assessment of Cancer Therapy-Breast scores compared to non-Appalachian residence. Implications: However, adjustment for sociodemographic and health-related differences by region appear to explain geographic differences in these poorer QOL indicators for women living in Appalachian Kentucky relative to non-Appalachian Kentucky. Policy-, provider-, and individual-level implications are discussed

Providers’ Perspectives on Addressing Health Risk Behaviors and Mental Health among Young Adult Survivors of Childhood Cance

Objectives: We examined healthcare providers’ perspectives on how childhood cancer impacts young adult health behaviors and psychosocial functioning, how healthy lifestyle and psychosocial issues are addressed in this population, challenges related to addressing these issues, and potential resources for addressing them.Methods: In 2012, we recruited 21 healthcare providers (e.g., oncologists, nurses, social workers) who treat young adult survivors of childhood cancer from a children’s hospital and a cancer center in the Southeastern U.S. to complete telephone-based semi-structured interviews.Results: Our sample was an average of 45.95 (SD=7.57) years old, 52.4% female, and 81.0% MDs. Most mentioned that the impact of cancer on health risk behaviors and psychosocial functioning depended on several things including social support and other environmental factors. Participants indicated several general activities and approaches aimed at addressing healthy lifestyles among this population. Participants reported a range of health education, from minimal education to continuous education throughout treatment and survivorship. Providers indicated a team-oriented approach to addressing psychosocial issues and that the survivorship program addressed the complications of obtaining insurance, education and employment, and reproductive health within this population. A major factor was the involvement of the family in addressing these issues. Providers’ challenges in intervening included limited time, resources, financial support, and referral options. Participants suggested resources to address these challenges.Conclusions: Several resources are needed to address the challenges faced by practitioners in addressing young adult survivors’ issues, including physical resources, social support resources, education for patients and healthcare providers, and programs to provide financial support

Health Care Avoidance Among Rural Populations: Results From a Nationally Representative Survey

BACKGROUND: Previous research suggests that certain populations, including rural residents, exhibit health care avoidant behaviors more frequently than other groups. Additionally, health care avoidance is related to sociodemographics, attitudes, social expectations, ability to pay for care, and prior experiences with providers. However, previous studies have been limited to specific geographic areas, particular health conditions, or by analytic methods. METHODS: The 2008 Health Information Trends Survey (HINTS) was used to estimate the magnitude of health care avoidance nationally and, while controlling for confounding factors, identify groups of people in the United States who are more likely to avoid health care. Chi-square procedures tested the statistical significance (P \u3c .05) of bivariate relationships. Multivariable analysis was conducted through a weighted multiple logistic regression with backward selection. RESULTS: For 6,714 respondents, bivariate analyses revealed differences (P \u3c .05) in health care avoidance for multiple factors. However, multiple regression reduced the set of significant factors (P \u3c .05) to rural residence (OR = 1.69), male sex (OR = 1.24), younger age (18-34 years OR = 2.34; 35-49 years OR = 2.10), lack of health insurance (OR = 1.43), lack of confidence in personal health care (OR = 2.24), lack of regular provider (OR = 1.49), little trust in physicians (OR = 1.34), and poor provider rapport (OR = 0.94). CONCLUSION: The results of this study will help public health practitioners develop programs and initiatives targeted and tailored to specific groups, particularly rural populations, which seek to address avoidant behavior, thereby reducing the likelihood of adverse health outcomes

Fatalistic Beliefs and Completion of the HPV Vaccination Series Among a Sample of Young Appalachian Kentucky Women

PURPOSE: Uptake and completion of the 3-dose human papillomavirus (HPV) vaccine is important for the primary prevention of cervical cancer. However, HPV vaccination rates among adolescent females and young women remain low in certain geographic areas of the United States, including Appalachia. Although greater fatalistic beliefs have been previously associated with lower rates of preventive cancer behaviors among adults, little research exists on the impact of fatalism on HPV vaccination behaviors, especially among younger individuals. Therefore, the purpose of this study was to examine the association between fatalistic beliefs and completion of the full HPV vaccine series among young women, ages 18-26, in Appalachian Kentucky. RESULTS: Data from this study were from a baseline survey completed by 344 women randomized into a communication intervention trial focused on increasing adherence to the 3-dose HPV vaccine series. Principal components analysis was used to construct 2 fatalism-related subscales from 8 survey questions. FINDINGS: In a controlled analysis, 1 subscale-- lack of control over cancer --was significantly associated with not completing the full HPV vaccine series. In a rural area that experiences higher rates of cervical cancer, poverty, limited access to health care, and negative cancer-related attitudes and experiences, fatalism may be common, even among young people. CONCLUSION: Future educational and interventional research addressing fatalistic beliefs in a culturally sensitive manner may be warranted to improve HPV vaccination behaviors and impact cancer disparities among Appalachian women