(4)Southwest American Indian Cancer Network, Cancer Epidemiology Presentation for Roundtable for Tribal and Indian Health Service Center Cancer Pathways, September 21, 2012, Heard

Inter Tribal Council of Arizona Tribal Epidemiology Center

TEC Director Jamie Ritchey MPH, PhD

September 21, 2012

• Data Review– Overview of cancer statistics for American Indians from

the Arizona cancer registry

• Article Review– Petersen NJ, Joshi S, Flood T, and Coe K. Prioritizing

interventions and research to address the cancer disparities of Arizona American Indian Population. Journal of Health Disparities Research and Practice. 2010; 4(1) 70-6.

• Survey Review – Results from the survey of existing cancer services

provided at Indian Health Services (IHS) Phoenix Area Service Units, August 2007 – March 2008

Objectives

Cancer Epidemiology Data Review

Arizona Cancer Registry

Arizona Cancer Registry• Began in 1981

• Mandatory cancer reporting in 1988 Arizona Revised Statute §36-133

• Rules for case reporting in 1992 Arizona Administrative Code Title 9, Chapter 4

• Provide data to New Mexico Tumor Registry for American Indian registry for SEER statistics

• Population-based NPCR registry: – Cancer site – Case demographics– Year of diagnosis

Arizona Cancer Registry Home page: http://www.azdhs.gov/phs/phstats/acr/

Incidence rates for all cancers from

1995 – 2009 among AIs:

– May be increasing but statistically significant differences are difficult to establish

– Large fluctuations between years may be due to a small number of cancer cases leading to unstable incidence rates

Arizona Cancer Registry

Cancer Site2009

N Incidence Rate1 per 100,000

95% CI AI:NHWIncidence Rate Ratio

ALL CANCERS 608 266 248-283 0.7

Prostate2 72 85 56-114 0.8

Colorectal 59 25 17-32 0.7

Breast3 58 45 32-59 0.3

Kidney / RP4 54 24 17-31 1.4

Liver /IBD5 24 11 5-17 1.8

Lung / Bronchus 23 11 4-18 0.2

Stomach 23 11 6-16 2.8

Gallbladder 17 8 2-14 4.0

Pancreatic 15 7 2-13 0.6Cervical3 14 10 5-16 1.4

Oral 12 5 0-9 0.5

Arizona Cancer Registry1

1 American Indians in Arizona for 2009, incidence rates are age-adjusted 2 Men only 3 Women only 4 Renal pelvis 5Intrahepatic bile duct

Cancer Disparities Geographically in Arizona• Arizona Community health analysis areas (CHAAs)

– Built on 2000 Census Block groups– Contain about 21,500 residents– Cancer cases are assigned based on place of residence– PO boxes were assigned with town of residence– Can be limited to “Indian Community” but not Tribal population– Additional information on CHAAs:

http://www.azdhs.gov/phs/azchaa/CHAA_FAQ.pdf

• Cancer sites with AI:NHW disparity not available by CHAA:– Gallbladder– Stomach– Liver/IBD

Arizona Cancer Registry

Incidence rates per 100,000 for

Kidney Renal Pelvis cancer in AZ 2001 - 2004

Community Health Analysis Areas1

• Highest number of cases in the Navajo CHAA (45), but not the highest rate (16, 95% CI 11-20)

• Highest rates are seen among Tohono O’Odham CHAA (69, 95% CI: 36-102), San Carlos Apache CHAA (41, 95% CI: 14-69), Hopi CHAA (38, 95% CI: 13-64)

• Few incidence rates in CHAAs are statistically different

Arizona Cancer Registry

1 Rates are not specific to American Indians andracial disparities cannot be displayed geographically

• Differences in incidence rates for all cancers among AIs over time (1995-2009) are difficult to establish, yet trends suggest that the overall cancer rate may be increasing in AZ among AIs

• Cancers with the highest incidence rates in 2009 among AIs can be detected through screening (secondary prevention), including: Prostate, Colorectal, and Breast

• Cancer racial disparities are seen for AIs compared to NHW for: Gallbladder, Kidney/renal pelvis, Stomach, Liver/IBD, and Cervical cancers

• Geographically, gallbladder, stomach and liver/IBD are not available by CHAA area and CHAAs do not display racial disparities

Summary

Cancer Epidemiology Article Review

Petersen NJ, Joshi S, Flood T, and Coe K. Prioritizing interventions and research to address the cancer disparities of Arizona American Indian Population. Journal of Health Disparities Research

and Practice 2010; 4(1) 70-6.

Introduction

• Provide evidence-based recommendations and use relevant data for tools:– Matrix A

• Cancer sites that have effective prevention primary (known risk factors) and secondary prevention (early detection)

– Matrix B• Cancer sites that do not have effective prevention or detection

interventions - “lesser opportunity for intervention”

• To facilitate application of the matrices, a 5-part implementation plan was also created, but not included here

Petersen, et al. 2010

1 Literature review and evidence-based prevention strategies only taken from: Department of Health and Humans Services. Agency for Healthcare Research and Quality. United States Preventative Services Task Force. Available at: http://www.ahrq.gov/clinic/prevenix.htm. Accessed October 16, 2008.

Introduction• Primary Prevention. Avoiding disease by controlling

causes and risk factors. What can I do to reduce my community’s risk for

developing cancer?

• Secondary Prevention. After exposure to a risk factor or diagnosis of a disease, take steps to cure the disease or reduce complications through early diagnosis and treatments.

How do I improve my community’s likelihood of being diagnosed in the earliest, curable stage of cancer?

• Tertiary Prevention. After diagnosis of a disease, take steps to delay progress of existing complications or development of severe complications. Preventing “disability” or “death” from the disease.

Once diagnosed with cancer, what can be done to maintain a high quality of life for persons in my community?

Petersen, et al. 2010

Methods• Literature review for evidence-based prevention

strategies, included1:• Effectiveness, cost, and benefits of primary, secondary

and tertiary prevention methods• Measuring the cancer burden

• A cancer data analysis was provided to be used with the matrices (not included in the publication)

• An implementation plan for using the matrix in order to prioritize research and interventions was developed (not included in the report publication)

Petersen, et al. 2010

1 Literature review and evidence-based prevention strategies only taken from: Department of Health and Humans Services. Agency for Healthcare Research and Quality. United States Preventative Services Task Force. Available at: http://www.ahrq.gov/clinic/prevenix.htm. Accessed October 16, 2008.

Petersen, et al. 2010Health Disparities addressed

for AIs in Arizona (2001-2004) Matrix A (proven interventions)

Primary prevention.• Tobacco-related cancers1

• High prevalence or rates of other risk factors for reduction (BRFSS or other surveys)

Secondary prevention.• Late stage of diagnosis for

breast, colorectal, and cervical cancers

Tertiary prevention.• Treatment• Utilization of end-of-life services

(no measure)1 No disparity in incidence rates or stage at diagnosis for tobacco-related cancers among AIs in AZ

Literature review and evidence-based prevention strategies only taken from: Department of Health and Humans Services. Agency for Healthcare Research and Quality. United States Preventative Services Task Force. Available at: http://www.ahrq.gov/clinic/prevenix.htm. Accessed October 16, 2008.

Petersen, et al. 2010Health Disparities addressed for

AIs in Arizona (2001-2004) Matrix B

(largely unproven interventions)

Primary prevention.• Hepatitis B immunization• Alcohol avoidance• Sunscreen usage• Diet?• Smoking?

Secondary prevention.• Prostate specific antigen screening

/ Digital rectal exam• Hepatitis B and C screening• H. pylori screening

Tertiary prevention.• Treatment

Literature review and evidence-based prevention strategies only taken from: Department of Health and Humans Services. Agency for Healthcare Research and Quality. United States Preventative Services Task Force. Available at: http://www.ahrq.gov/clinic/prevenix.htm. Accessed October 16, 2008.

• Full implementation plan not presented, but outlined: – Pilot plan with a Tribe – Identify, educate, and train health workers to

use the tool– Trained Tribal community members will then

plan a community based prioritization program using the matrix

– Tribes can implement the cancer control plan– Review, evaluate and report the results of the

program

Petersen, et al. 2010

• Tribal leaders have a difficult task of determining cancer priorities and matrices may assist in this process

• For many cancer sites, primary, secondary, and tertiary evidence-based interventions are available and effective

• The matrices approach could be tested and evaluated depending on community needs

Petersen, et al. 2010

Strengths• The Southwest American Indian Collaborative Network (SAICN)

“…assures active participation of tribal communities in the process of assessing cancer burden”

• SAICN promotes the use of relevant data in decision making• At the time of the report, the most recent AZ registry data was

used and evidence-based information

Limitations• Tribes should be included in matrices development• Evidence-based information should come from multiple sources

not just the United States Preventative Services Task Force• The full implementation plan and cancer analysis were not

included in the report (space limitation)

Petersen, et al. 2010

• The matrices A and B need to be evaluated for effectiveness with Tribal partners (i.e., did Tribes want / use these tools?), and if so:

– A complete literature search should be conducted and search terms and findings included in the methodology

– Peer-reviewed evidence now needs to be updated for Matrix A and B

– Citations referring to evidence should be provided in the matrices

– The matrices implementation plan needs to be reviewed and possibly updated

– Tribal partners should be included at all phases of development including the revisions of the matrices

Summary

Cancer Epidemiology Survey Review

Survey of existing cancer services provided at Indian Health Services (IHS)

in Phoenix Area Service Units (SUs)August 2007 – March 2008

Purpose:• Identify and quantify the types of cancer

specific services available at Phoenix Area IHS-operated facilities in the following areas:– Screening and early detection services– Diagnostic services– Treatment services– Prevention and education services– Supportive care services

IHS cancer services Phoenix SUs 2007-2008

Methods: Study population• The survey tool was mailed in June 2007 to

IHS operated service units (SUs) in the Phoenix Service Area (Arizona, Nevada, Utah) to either clinic directors, CEOs, or secretaries

• Two Tribally operated facilities were not included in the analysis

• Follow-up phone calls were made to retrieve surveys between August 2007 and March 2008

IHS cancer services Phoenix SUs 2007-2008

Methods: Survey design• Cross-sectional

• Questions based on several of the American College of Surgeon’s Commission on Cancer’s hospital approval requirements1

• Questions assessed cancer services either on-site or at other facilities cancer patients are referred to (paid by IHS)

• Microsoft Access was used to compile the survey data and Microsoft Excel was used to create tables and graphs

IHS cancer services Phoenix SUs 2007-2008

Results• A total of 8 surveys were returned

from IHS operated service units (SUs) in the Phoenix Service Area

IHS cancer services Phoenix SUs 2007-2008

Results: Cancer Screening Services Available • 100% of SUs offered:

– Tobacco use and exposure assessment

• 88% of SUs offered:– Clinical breast exam – Pap Smear– Fecal Occult Blood Test (FOBT)– Prostate exams and Prostate specific antigen (PSA) testing

• 38% of SUs offered:– Mammography, colonoscopy, and flexible sigmoidoscopy

• Only one SU reported that they did not offer or refer for mammography, FOBT, colonoscopy, sigmoidoscopy, prostate exams, or PSA testing services

IHS cancer services Phoenix SUs 2007-2008

Results: Cancer Diagnostic Services

• Most SUs refer clinical lab services

• Over half of SUs have or refer radiology services

• Half of SUs refer for nuclear medicine or cancer staging services

IHS cancer services Phoenix SUs 2007-2008

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On-site Referral

Results: Cancer Treatment Services• One SU provided treatment services on-

site:– Outpatient medical oncology unit– Surgical oncology services– Nursing staff specialized in oncology and dedicated

to cancer care– Traditional healing/medicine services

• All SUs refer out patients for radiation treatment, medical oncology services, and pediatric cancer services

IHS cancer services Phoenix SUs 2007-2008

Results: Cancer Prevention and Education Services

• Two SUs did not provide information

• 62% reported prevention and education services for skin cancer

• 75% reported prevention and education services for:– Cancer prevention education, screening, and breast, cervical

and prostate health– Tobacco cessation and youth smoking – Nutrition and weight management programs

IHS cancer services Phoenix SUs 2007-2008

Results: Cancer Supportive Care Services• 75% provided mental health evaluation, counseling,

and psychiatric care• 63% provided transportation • 50% provided palliative care• 38% provided end-of-life care• 25% provided Traditional healing / spiritual care• 13% provided support groups, Pastor, and genetic

testing

IHS cancer services Phoenix SUs 2007-2008

• Strengths– Survey questions were designed based on an

established cancer approvals program standards

– Surveys were completed within 6 months – Follow up calls were made to retrieve surveys

• Limitations– Not all SUs responded to all of the questions– Data may be out of date and not reflective of

current IHS Phoenix service area cancer care– SUs managed by Tribes were not included

IHS cancer services Phoenix SUs 2007-2008

• Determine if a re-survey of IHS cancer services would be useful

– Possibly examine Tucson and Phoenix service areas

– Possibly include 638 Tribal hospitals

• Since most patients are referred out for treatment:– Examine the referral process and provider

coordination– Examine quality of cancer care at the referral

facilities

Summary

• Produce an updated cancer surveillance report for Tribal partners in Arizona, Nevada, and Utah investigating three main U.S. surveillance systems: SEER, NPCR and NCDB

• Possibly partner to update matrices and create additional tools based on feedback from Tribes, IHS, and others (Petersen, NJ et al. 2010)

• Possibly conduct a re-survey of IHS Phoenix area service units (SUs) to determine if IHS cancer services have changed from 2007 - 2008 survey compared to 2012 - 2013

• Examine the cancer care processes for quality improvement points among patients diagnosed at IHS facilities and referred to other facilities for cancer treatment / services (paid by IHS)

Potential Future Directions

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