Understanding the true burden of cancer in American Indian and Alaska native communities

Judith S Kaur, Linda Burhansstipanov, Linda U. Krebs

Research output: Chapter in Book/Report/Conference proceedingChapter

6 Citations (Scopus)

Abstract

Background. Cancer incidence rates vary among American Indian and Alaska Native (AI/AN) populations and also often differ from rates among Non-Hispanic Whites (NHWs) living in the same geographic region. [1-4] In addition, geographic differences in incidence rates between AIs and NHWs living in the Northern and Southern Plains are significant. [3, 5, 6] AIs in the Northern and Southern Plains have lower survival rates for most cancer sites in comparison to AIs living elsewhere. [7, 8] Because AI/AN cancer data have significant geographic differences, it is inaccurate to generate statistics for the total population. Most recent data show that the cancer burden continues to escalate among AI/ANs. [3] This burden includes the multiple ways cancer affects an individual, the entire family and their community. For families, these burdens include loss of income, relocation of family to serve as patient caregivers, increased demands (time and money) for transportation to and from healthcare facilities for cancer care, childcare costs, and alterations in traditional relationships. Cancer is more prevalent among elders than in people younger than 50. Typically, elders are the leaders and wisdom keepers of the community. Chronic disease or death deprives the community of that irreplaceable resource. A well-known comment is, "Every time an elder dies, a library burns." The impact of this loss of leadership and knowledge creates a burden that is greatest on small communities. Methods. The authors reviewed the extant epidemiology literature on cancer incidence and mortality in AI/AN populations and the largest AI/AN cancer survivors' database. Two representative cancer sites were examined (breast and colorectal) because both have the potential to improve throughscreening. Findings. Although AI/ANs have significant variations in age-adjusted rates, raw numbers in geographic regions with low age-adjusted rates, such as the Southwest, also identify an excessive burden of disease.Conclusion. Local AI/AN programs need to collect cancer data for their communities. Community based participatory research is the best way to help communities work with academic, state and federal resources to identify solutions. Until local data are available, regional AI/AN data provide the most accurate estimates of cancer incidence, mortality and survival. Both age-adjusted and raw number counts help illustrate the true cancer burden among rural, Reservation and urban AI/ANs. Better data collection will guide communities to develop infrastructure for the full cancer continuum from prevention through end of life. The burdens noted in this chapter provide the rationale for increasing cancer resources for local AI/AN communities.

Original languageEnglish (US)
Title of host publicationHealth Disparities: Epidemiology, Racial/Ethnic and Socioeconomic Risk Factors and Strategies for Elimination
PublisherNova Science Publishers, Inc.
Pages39-75
Number of pages37
ISBN (Print)9781626185708
StatePublished - 2013

Fingerprint

North American Indians
Neoplasms
Incidence
Alaska Natives
Community-Based Participatory Research
Cancer Care Facilities
Mortality
Population Characteristics
Burns
Caregivers
Population
Libraries
Survivors

ASJC Scopus subject areas

  • Medicine(all)

Cite this

Kaur, J. S., Burhansstipanov, L., & Krebs, L. U. (2013). Understanding the true burden of cancer in American Indian and Alaska native communities. In Health Disparities: Epidemiology, Racial/Ethnic and Socioeconomic Risk Factors and Strategies for Elimination (pp. 39-75). Nova Science Publishers, Inc..

Understanding the true burden of cancer in American Indian and Alaska native communities. / Kaur, Judith S; Burhansstipanov, Linda; Krebs, Linda U.

Health Disparities: Epidemiology, Racial/Ethnic and Socioeconomic Risk Factors and Strategies for Elimination. Nova Science Publishers, Inc., 2013. p. 39-75.

Research output: Chapter in Book/Report/Conference proceedingChapter

Kaur, JS, Burhansstipanov, L & Krebs, LU 2013, Understanding the true burden of cancer in American Indian and Alaska native communities. in Health Disparities: Epidemiology, Racial/Ethnic and Socioeconomic Risk Factors and Strategies for Elimination. Nova Science Publishers, Inc., pp. 39-75.
Kaur JS, Burhansstipanov L, Krebs LU. Understanding the true burden of cancer in American Indian and Alaska native communities. In Health Disparities: Epidemiology, Racial/Ethnic and Socioeconomic Risk Factors and Strategies for Elimination. Nova Science Publishers, Inc. 2013. p. 39-75
Kaur, Judith S ; Burhansstipanov, Linda ; Krebs, Linda U. / Understanding the true burden of cancer in American Indian and Alaska native communities. Health Disparities: Epidemiology, Racial/Ethnic and Socioeconomic Risk Factors and Strategies for Elimination. Nova Science Publishers, Inc., 2013. pp. 39-75
@inbook{72cdbbc8ba49460c94ea4eccde787f01,
title = "Understanding the true burden of cancer in American Indian and Alaska native communities",
abstract = "Background. Cancer incidence rates vary among American Indian and Alaska Native (AI/AN) populations and also often differ from rates among Non-Hispanic Whites (NHWs) living in the same geographic region. [1-4] In addition, geographic differences in incidence rates between AIs and NHWs living in the Northern and Southern Plains are significant. [3, 5, 6] AIs in the Northern and Southern Plains have lower survival rates for most cancer sites in comparison to AIs living elsewhere. [7, 8] Because AI/AN cancer data have significant geographic differences, it is inaccurate to generate statistics for the total population. Most recent data show that the cancer burden continues to escalate among AI/ANs. [3] This burden includes the multiple ways cancer affects an individual, the entire family and their community. For families, these burdens include loss of income, relocation of family to serve as patient caregivers, increased demands (time and money) for transportation to and from healthcare facilities for cancer care, childcare costs, and alterations in traditional relationships. Cancer is more prevalent among elders than in people younger than 50. Typically, elders are the leaders and wisdom keepers of the community. Chronic disease or death deprives the community of that irreplaceable resource. A well-known comment is, {"}Every time an elder dies, a library burns.{"} The impact of this loss of leadership and knowledge creates a burden that is greatest on small communities. Methods. The authors reviewed the extant epidemiology literature on cancer incidence and mortality in AI/AN populations and the largest AI/AN cancer survivors' database. Two representative cancer sites were examined (breast and colorectal) because both have the potential to improve throughscreening. Findings. Although AI/ANs have significant variations in age-adjusted rates, raw numbers in geographic regions with low age-adjusted rates, such as the Southwest, also identify an excessive burden of disease.Conclusion. Local AI/AN programs need to collect cancer data for their communities. Community based participatory research is the best way to help communities work with academic, state and federal resources to identify solutions. Until local data are available, regional AI/AN data provide the most accurate estimates of cancer incidence, mortality and survival. Both age-adjusted and raw number counts help illustrate the true cancer burden among rural, Reservation and urban AI/ANs. Better data collection will guide communities to develop infrastructure for the full cancer continuum from prevention through end of life. The burdens noted in this chapter provide the rationale for increasing cancer resources for local AI/AN communities.",
author = "Kaur, {Judith S} and Linda Burhansstipanov and Krebs, {Linda U.}",
year = "2013",
language = "English (US)",
isbn = "9781626185708",
pages = "39--75",
booktitle = "Health Disparities: Epidemiology, Racial/Ethnic and Socioeconomic Risk Factors and Strategies for Elimination",
publisher = "Nova Science Publishers, Inc.",

}

TY - CHAP

T1 - Understanding the true burden of cancer in American Indian and Alaska native communities

AU - Kaur, Judith S

AU - Burhansstipanov, Linda

AU - Krebs, Linda U.

PY - 2013

Y1 - 2013

N2 - Background. Cancer incidence rates vary among American Indian and Alaska Native (AI/AN) populations and also often differ from rates among Non-Hispanic Whites (NHWs) living in the same geographic region. [1-4] In addition, geographic differences in incidence rates between AIs and NHWs living in the Northern and Southern Plains are significant. [3, 5, 6] AIs in the Northern and Southern Plains have lower survival rates for most cancer sites in comparison to AIs living elsewhere. [7, 8] Because AI/AN cancer data have significant geographic differences, it is inaccurate to generate statistics for the total population. Most recent data show that the cancer burden continues to escalate among AI/ANs. [3] This burden includes the multiple ways cancer affects an individual, the entire family and their community. For families, these burdens include loss of income, relocation of family to serve as patient caregivers, increased demands (time and money) for transportation to and from healthcare facilities for cancer care, childcare costs, and alterations in traditional relationships. Cancer is more prevalent among elders than in people younger than 50. Typically, elders are the leaders and wisdom keepers of the community. Chronic disease or death deprives the community of that irreplaceable resource. A well-known comment is, "Every time an elder dies, a library burns." The impact of this loss of leadership and knowledge creates a burden that is greatest on small communities. Methods. The authors reviewed the extant epidemiology literature on cancer incidence and mortality in AI/AN populations and the largest AI/AN cancer survivors' database. Two representative cancer sites were examined (breast and colorectal) because both have the potential to improve throughscreening. Findings. Although AI/ANs have significant variations in age-adjusted rates, raw numbers in geographic regions with low age-adjusted rates, such as the Southwest, also identify an excessive burden of disease.Conclusion. Local AI/AN programs need to collect cancer data for their communities. Community based participatory research is the best way to help communities work with academic, state and federal resources to identify solutions. Until local data are available, regional AI/AN data provide the most accurate estimates of cancer incidence, mortality and survival. Both age-adjusted and raw number counts help illustrate the true cancer burden among rural, Reservation and urban AI/ANs. Better data collection will guide communities to develop infrastructure for the full cancer continuum from prevention through end of life. The burdens noted in this chapter provide the rationale for increasing cancer resources for local AI/AN communities.

AB - Background. Cancer incidence rates vary among American Indian and Alaska Native (AI/AN) populations and also often differ from rates among Non-Hispanic Whites (NHWs) living in the same geographic region. [1-4] In addition, geographic differences in incidence rates between AIs and NHWs living in the Northern and Southern Plains are significant. [3, 5, 6] AIs in the Northern and Southern Plains have lower survival rates for most cancer sites in comparison to AIs living elsewhere. [7, 8] Because AI/AN cancer data have significant geographic differences, it is inaccurate to generate statistics for the total population. Most recent data show that the cancer burden continues to escalate among AI/ANs. [3] This burden includes the multiple ways cancer affects an individual, the entire family and their community. For families, these burdens include loss of income, relocation of family to serve as patient caregivers, increased demands (time and money) for transportation to and from healthcare facilities for cancer care, childcare costs, and alterations in traditional relationships. Cancer is more prevalent among elders than in people younger than 50. Typically, elders are the leaders and wisdom keepers of the community. Chronic disease or death deprives the community of that irreplaceable resource. A well-known comment is, "Every time an elder dies, a library burns." The impact of this loss of leadership and knowledge creates a burden that is greatest on small communities. Methods. The authors reviewed the extant epidemiology literature on cancer incidence and mortality in AI/AN populations and the largest AI/AN cancer survivors' database. Two representative cancer sites were examined (breast and colorectal) because both have the potential to improve throughscreening. Findings. Although AI/ANs have significant variations in age-adjusted rates, raw numbers in geographic regions with low age-adjusted rates, such as the Southwest, also identify an excessive burden of disease.Conclusion. Local AI/AN programs need to collect cancer data for their communities. Community based participatory research is the best way to help communities work with academic, state and federal resources to identify solutions. Until local data are available, regional AI/AN data provide the most accurate estimates of cancer incidence, mortality and survival. Both age-adjusted and raw number counts help illustrate the true cancer burden among rural, Reservation and urban AI/ANs. Better data collection will guide communities to develop infrastructure for the full cancer continuum from prevention through end of life. The burdens noted in this chapter provide the rationale for increasing cancer resources for local AI/AN communities.

UR - http://www.scopus.com/inward/record.url?scp=84895338910&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84895338910&partnerID=8YFLogxK

M3 - Chapter

SN - 9781626185708

SP - 39

EP - 75

BT - Health Disparities: Epidemiology, Racial/Ethnic and Socioeconomic Risk Factors and Strategies for Elimination

PB - Nova Science Publishers, Inc.

ER -