National Cancer Institute Health Disparity And Cancer - - PowerPoint PPT Presentation

▶
national cancer institute health disparity and cancer
SMART_READER_LITE
LIVE PREVIEW

National Cancer Institute Health Disparity And Cancer - - PowerPoint PPT Presentation

Sep 02, 2022 191 likes •609 views

National Cancer Institute Health Disparity And Cancer Survivorship: Exploration of Uncharted Research Diana D. Jeffery, Ph.D., Program Director Office of Cancer Survivorship Division of Cancer Control & Population Sciences presented to

slide-1
SLIDE 1

Health Disparity And Cancer Survivorship: Exploration of Uncharted Research

Diana D. Jeffery, Ph.D., Program Director Office of Cancer Survivorship Division of Cancer Control & Population Sciences

presented to

Center for Health/HIV Intervention and Prevention University of Connecticut June 11, 2006 Storrs, Connecticut

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-2
SLIDE 2

Outline

  • Definition of cancer survivorship
  • Prevalence of cancer survivors
  • Scope of cancer survivorship research
  • Cancer survivorship research focused on

health disparities

– Select findings of OCS grants

  • Learning from cancer screening

research: barriers to care and surveillance

  • Uncharted research

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-3
SLIDE 3

Definition of Cancer Survivor Definition of Cancer Survivor

Anyone diagnosed with cancer, from

the time of diagnosis to the end of life (National Coalition of Cancer Survivors)

Caregivers and family members

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-4
SLIDE 4

The Dream of Yesterday The Dream of Yesterday

National Cancer Act of 1971

“Make the Conquest of Cancer a National Crusade”

President Richard Nixon signs National Cancer Act on December 23, 1971

slide-5
SLIDE 5

Estimated Number of Cancer Survivors in 1996

  • There are 8.4 million cancer survivors in

the United States.

11

Data Sources: Connecticut 1994 prevalence estimates applied to1996 population estimates from the US Census Bureau

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-6
SLIDE 6

Data source: 2004 Submission. U.S. Estimated Prevalence counts were estimated by applying U.S. populations to SEER 9 and historical Connecticut Limited Duration Prevalence proportions and adjusted to represent complete prevalence. Populations from January 2002 were based on the average of the July 2001 and July 2002 population estimates from the U.S. Bureau of Census.

2,000,000 4,000,000 6,000,000 8,000,000 10,000,000 12,000,000 1 9 7 1 1 9 7 3 1 9 7 5 1 9 7 7 1 9 7 9 1 9 8 1 1 9 8 3 1 9 8 5 1 9 8 7 1 9 8 9 1 9 9 1 1 9 9 3 1 9 9 5 1 9 9 7 1 9 9 9 2 1 2 3

Year Number

Estimated Number Cancer Survivors in the United States from 1971 to 2003

slide-7
SLIDE 7

Data sources: U.S. Estimated Prevalence counts were estimated by applying U.S. populations to SEER 9 and historical Connecticut Limited Duration Prevalence proportions and adjusted to represent complete

  • prevalence. Populations from January 2003 were based on the average of the July 2002 and July 2003

population estimates from the U.S. Bureau of Census.

Estimated Number of Persons Alive in the U.S. Diagnosed With Cancer by Site (N = 10.5 M): 2005

17% 7% 23% 19% 10% 9% 6% 6% 3%

Female Breast Prostate Colorectal Gynecologic Other GU (Bladder & Testis) Hematologic (HD, NHL, Leukemia) Melanoma Lung Other

slide-8
SLIDE 8

IOM Reports

  • No health disparities in Cancer Survivor report
  • No survivorship in Unequal Treatment report

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health

From Cancer Patient to Cancer Survivor: Lost in Transition, 2005 Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare, 2003

slide-9
SLIDE 9

U.S. Census 2004 Estimated Population by Race/Ethnicity N = 293,655,404

20,000,000 40,000,000 60,000,000 80,000,000 100,000,000 120,000,000 Males Females White Black AIAN Asian NHPI Hispanic

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-10
SLIDE 10

2003 Estimated U. S. Cancer Prevalence of Male Cancer Survivors by Race/Ethnicity and Years Since Diagnosis

200000 400000 600000 800000 1000000 1200000 1400000 1600000 1800000 2000000

0 to <5 5 to <10 10 to <15 15 to <20 20 to < 25

White Black Asian/PI Hispanic/Latino

National Cancer Institute

U.S. DEPARTME NT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health

Source: SEER Cancer Statistics Review 1975-2003, Table II – 16, All Sites (Invasive)

Estimates are incomplete, based on SEER White and Black: 9 SEER areas Asian/PI: 11 SEER areas and Rural Georgia Hispanic: NHIA for 11 SEER areas and rural Georgia excluding Hawaii and Seattle.

slide-11
SLIDE 11

2003 Estimated U. S. Cancer Prevalence of Female Cancer Survivors by Race/Ethnicity and Years Since Diagnosis

200000 400000 600000 800000 1000000 1200000 1400000 1600000 1800000

<5 5 to <10 10 to <15 15 to <20 20 to < 25

White Black Asian/PI Hispanic/Latino

National Cancer Institute

U.S. DEPARTME NT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health

Source: SEER Cancer Statistics Review 1975-2003, Table II – 16, All Sites (Invasive)

Estimates are incomplete, based on SEER White and Black: 9 SEER areas Asian/PI: 11 SEER areas and Rural Georgia Hispanic: NHIA for 11 SEER areas and rural Georgia excluding Hawaii and Seattle.

slide-12
SLIDE 12

2003 Estimated U. S. Cancer Prevalence of Male Cancer Survivors by Race/Ethnicity and Years Since Diagnosis N = 4.7 million

500000 1000000 1500000 2000000 2500000 3000000 3500000 4000000 4500000

Total 0 to <13 0 to <28 >=28

White Black Asian/PI Hispanic/Latino

National Cancer Institute

U.S. DEPARTME NT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health

Source: SEER Cancer Statistics Review 1975-2003, Table II – 16, All Sites (Invasive) NHIA - NAACCR Hispanic Identification Algorithm

Estimates are complete, based on SEER

White and Black: 9 SEER areas Asian/PI: 11 SEER areas and Rural Georgia Hispanic: NHIA for 11 SEER areas and rural Georgia excluding Hawaii and Seattle.

slide-13
SLIDE 13

2003 Estimated U. S. Cancer Prevalence of Female Cancer Survivors by Race/Ethnicity and Years Since Diagnosis N = 5.8 million

1000000 2000000 3000000 4000000 5000000 6000000

Total 0 to <13 0 to <28 >=28

White Black Asian/PI Hispanic/Latino

National Cancer Institute

U.S. DEPARTME NT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health

Source: SEER Cancer Statistics Review 1975-2003, Table II – 16, All Sites (Invasive) NHIA - NAACCR Hispanic Identification Algorithm

Estimates are complete, based on SEER

White and Black: 9 SEER areas Asian/PI: 11 SEER areas and Rural Georgia Hispanic: NHIA for 11 SEER areas and rural Georgia excluding Hawaii and Seattle.

slide-14
SLIDE 14

2003 Estimated U. S. Cancer Prevalence of Cancer Survivors by Race/Ethnicity

< 25 years

  • 9.3 million non-Hispanic whites
  • 816,249 Blacks

< 10 years

  • 138,541 Asians/Pacific Islanders
  • 308,536 Hispanics/Latinos

Source: SEER Cancer Statistics Review 1975-2003, Table II – 16, All Sites (Invasive)

National Cancer Institute

U.S. DEPARTME NT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-15
SLIDE 15
  • U. S. Map of SEER Areas,

2005

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-16
SLIDE 16

Geographic Distribution of Hispanics/Latinos, 2002

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-17
SLIDE 17

Age Distribution by Sex and Hispanic Age Distribution by Sex and Hispanic Origin: 2002 Origin: 2002

6 4 2 2 4 6

5-9 15-19 25-29 35-39 45-49 55-59 65-69 75-79 85+

6 4 2 2 4 6

Male Female Female Male

Hispanic Non-Hispanic White

Each bar represents the percent of the Hispanic (or non-Hispanic White) population who were within the specified age group and of the specified sex.

Source: Current Population Survey, March 2002, PGP-5

slide-18
SLIDE 18

Twelve Year Prevalence Counts of Cancer Survivors on 1/1/2002 Among Hispanics N=349,805

2% 12% 8% 3% 0% 2% 2% 19% 10% 18% 2% 5% 1% 5% 1% 3% 5%

  • ral

digestive colon & rectum respiratory bones & joints skin, basal & squamous melanoma breast female gyn prostate male genital system urinary system brain & other nervous system lymphoma Hodgkin lymphoma Leukemia Pediatric < age 20

Statistics provided by Statistical Research and Applications Branch, NCI, Data Source, November 2004 Submission. Populations from January 2002 were based on average of July 2001 & July 2002 population estimates from US Bureau of Census. US Estimated Prevalence Counts were estimated by applying US populations to SEER Limited Duration Prevalence proportions.

P r

  • s

t a t e

C

  • l
  • r

e c t a l

Digestive Breast G y n e c

  • l

U r i n a r y L y m p h

  • m

a Urinary

slide-19
SLIDE 19

Office of Cancer Survivorship: Scope of Cancer Survivorship Research

Identify, examine, prevent, and control adverse

cancer- and treatment-related outcomes

Physical symptoms, late-effects Psychological sequelae Social and economic problems Provide a knowledge base regarding optimal

follow-up care and surveillance of cancer survivors, and

Optimize health after cancer treatment.

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-20
SLIDE 20

FY2004 Survivorship Research Grants by FY2004 Survivorship Research Grants by Survivor Population Studied Survivor Population Studied

(*Grants may have more than 1 focus) (*Grants may have more than 1 focus)

6 4 7 29 35 39 15 12 14 42

5 10 15 20 25 30 35 40 45 50

Spanish-Speaking Rural Survivors Premature Menopausal Survivors Family Members/Caregivers Ethnic/Racial Minorities Cancer Survivors > 5 Yrs Post-Dx Older Adult (>65 Yrs dx) Young Adult (20-45 Yrs dx) Adolescent Survivors (14-19 Yrs dx) Pediatric Survivors (<19 Yrs dx)

Number of Grants

slide-21
SLIDE 21

National Cancer Institute

U.S. DEPARTME NT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-22
SLIDE 22

Representative Sample of OCS Active Grants Focused on Health Disparities

  • 5R01CA089418-04 PI: Carol Ferrans

Quality of life of African American Cancer Survivors

  • 5R03CA097890-02 PI: Miles Muraoka

Quality of life in multiethnic testis cancer survivors

  • 5R01CA096670-02 PI: Smita Bhatia

Ethnic differences in survival after childhood ALL

  • 5R03CA097916-02 PI: Ann Bettencourt

Rural women breast cancer survivors

  • 5R01CA105269-03 PI: Kathleen Ell

Multifaceted Oncology Depression Program for Latinos

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-23
SLIDE 23

Example of Survivorship Study Addressing Health Disparities

PURPOSE: “To assess the prevalence of depression among low-income, ethnic minority women with breast or gynecologic cancer, receipt of antidepressant medications

  • r counseling services, and correlates of depression”
  • 24% of ethnic minority, low-income women (N= 472) with

breast or gynecologic cancer report moderate to severe levels of depression

  • 12% with diagnosis of major depression receive

psychotropic medications

  • 5% see counselor or attend support group

Ell, et al. (2005). J Clin Oncol, 23: 3052-3060.

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-24
SLIDE 24

Uncharted Survivorship Barriers : Lessons from Cancer Screening Research

  • Demographic
  • Sociocultural
  • Educational
  • Psychological/Behavioral
  • Physical
  • Medical History
  • System

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-25
SLIDE 25

Demographic Barriers

  • Older age
  • Low income
  • Less education
  • Rural or inner city geographic

location

  • Female gender
  • Unmarried
  • Lack of insurance or under-insured
  • Uncompensated employment

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-26
SLIDE 26

Sociocultural Barriers

  • Time orientation
  • Spiritual/religious beliefs which support

passivity, discontent, or demonic reappraisal (Pargament et al, 2001)

  • Mistrust of western medicine, health

providers, or health care system

  • Cultural beliefs that cancer is a stigma,

curse, or shameful affliction

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-27
SLIDE 27

Sociocultural Barriers, cont.

  • Unmarried (indirect or direct effect)
  • Lack of insurance or under-insured
  • Uncompensated employment
  • Poor social support
  • Language

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-28
SLIDE 28

Psychological Barriers

  • Low risk perception (see Rajaran et al, 1998)
  • Impaired cognitive functioning
  • Mood disorder
  • Fear
  • Pattern of “delay behavior” for symptoms
  • Poor communication with health provider,

family, caregiver

  • Perceived discrimination

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-29
SLIDE 29

California Health Interview Survey:

Perceived Discrimination “The process by which a member of a socially defined group is treated differently because of membership in that group”

  • Do cancer survivors perceived

discrimination in their health care?

  • Do “socially defined groups” of cancer

survivors perceive discrimination at differential rates?

  • Is perceived discrimination indirectly

related to outcomes of follow up care?

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-30
SLIDE 30

Sample Characteristics

Total Population Cancer Survivors

N 55,428 4481

Age: 65+ (median) 14% (41) 47% (63) Sex : Female 51% 64% Urban dwelling 88% 84% U.S. born 69% 86% English only spoken at home 61% 81% Private MD office or HMO 82% 87% Perceived discrimination 2830 (5.1%) 303 (6.8%)

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-31
SLIDE 31

Type of Discrimination by Cancer Status: CHIS 2001

Cancer Survivors v. Individuals without Cancer

Type of Discrimination

Insurance Racism Beliefs Language Ageism Sexism 0.5 1 1.5 2 2.5 3 3.5

National Cancer Institute

U.S. DEPARTME NT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-32
SLIDE 32

Type of Discrimination by Cancer Status: CHIS 2001 Perceived Discrimination (Yes/No)

Variable OR (LCI – UCI) p Delayed care (test/rx) 4.0 (3.4 – 4.5) <.0001 Went out of country 1.7 (1.3 – 2.2 ) .0001 Cancer survivor 1.5 (1.2-1.9) .0001 < high school education 1.1 (0.9 – 1.3) n.s. Below poverty level 1.4 (1.2 – 1.6) <.0001 Employer insurance 0.6 (0.5 - 0.7) <.0001 Male 0.8 (0.7 -0.9 ) .0014 White 0.9 (0.8 – 1.0) n.s. * Covariate: age

  • .0160

National Cancer Institute

U.S. DEPARTME NT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-33
SLIDE 33

CHIS: Breast Cancer Survivors and Mammograms 2001 and 2003 Waves

“Who are less likely to have mammogram in past 2 years among women age 40 and older who do not report a cancer history

  • ther than breast cancer?”

Women who are…

  • Without a history of breast cancer
  • > age 80, or age 40 – 49 (compared to > age 80)
  • In “Other” racial/ethnic category (Asian, Native American,

Native Alaskan, Pacific Islanders…

  • Not married or living with a partner
  • Educated at or below high school level
  • Born outside the U. S. (immigrants)
  • Without health insurance
  • Receiving usual medical care in emergency rooms or urgent

care facilities, or have no usual source of health care

  • Below the federal poverty level

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-34
SLIDE 34

Uncharted Research in Health Disparities: The New Frontier in Cancer Survivorship

  • Prevalence

– Rural – Immigrant – Uninsured – Poor – Access – Elderly – Racial/ethnic groups as reflected by cultures and communities

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-35
SLIDE 35

Uncharted Research in Health Disparities: The New Frontier in Cancer Survivorship

  • Beliefs and understanding of cancer etiology,

treatment, and follow up needs – Health literacy – Patient/provider communication – Fatalism versus optimism – Religious/spiritual beliefs

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-36
SLIDE 36

Uncharted Research in Health Disparities: The New Frontier in Cancer Survivorship

  • Resources to meet follow up needs

– Location, type, and frequency of care – Medical care with oncology expertise – Support groups, mental health services

  • Economic impact on family and social

system

– Employment of survivors and caregiver(s) – Costs related to follow up care, ongoing therapy

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-37
SLIDE 37

Uncharted Research: Capturing the Changing Population

  • As established cohorts and newly

arrived immigrants age, within the next 50 years there will be > 10 million Latino individuals needing

  • ncologic services, and well over

35 million needing cancer care.

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-38
SLIDE 38

Research Articles in PubMed on Latino Survivorship by Category as of April 2006

  • Physiologic and/or

psychologic well-being 9 (30)

  • Quality of Life 8

(27)

  • End of life 2

( 7)

  • Spirituality 2

( 7)

  • Pain 2

( 7)

  • Communication 3

(10)

  • Social Support 3

(10)

  • Caregiver 1

( 3)

  • End of Life 0

( 0) Total articles found = 30 (100%)

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health

%

slide-39
SLIDE 39

"Supervivencia"

“… literally means "super living". It is tantamount to being super human, superman/superwoman, living larger than life, living a life that is truly miraculous. This is the deeper meaning that is easily conveyed by Spanish and not as easily transmitted in English. Papa and I had to look up the word because neither

  • f us remembered it, but the moment we said it I

realized we could write an article or book chapter

  • n the meaning of life and living with cancer and

survival of cancer in Spanish speaking cultures…”

Ann Marie Flores, 2003, personal communication

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-40
SLIDE 40

Questions?

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health
slide-41
SLIDE 41

Thank You

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes

  • f Health