Screening for diabetes in Indigenous Screening for diabetes in Indigenous communities in Alberta, Canada:communities in Alberta, Canada:

Kelli Ralph-CampbellDr. Ellen L. Toth

Dr. Malcolm King (presenter)University of Alberta Edmonton, Canada

February 11, 2006 Otago University, Dunedin

Reframing bioethical considerations within an Indigenous context

Number of Aboriginal People

10 – 299

300 – 1999

2000 – 10,000

Greater than 10,000

Atlas of Canada, 2003

Aboriginal Population 2001 CensusAboriginal Population 2001 Census

ALBERTAALBERTA

Aboriginal People in Alberta, 2001Aboriginal People in Alberta, 2001

• Approx. 156,000 Aboriginal People• 44,000 in Edmonton: 22,000 Calgary• 58% under age 24• 80,700 Registered Indians • 46 First Nations Communities • 66,000 Métis, 5000 live in 8 Settlements

Alberta Aboriginal Affairs

The Medicine ChestThe Medicine Chest

• “… a medicine chest shall be kept at the house of each Indian Agent for the use and benefit of the Indians at the direction of such agent.” (Treaty 6, 1876)

• Rural and remote health practitioners and services are today’s medicine chest

First Nations/Inuit to Canadian Rate Ratio for First Nations/Inuit to Canadian Rate Ratio for AgeAge--adjusted Chronic Disease Prevalenceadjusted Chronic Disease Prevalence

Young et al. and the FNIRHS Steering Committee

0246

Diabetes Hypertension HeartProblems

Cancer Arthritis /Rheumatism

Male Female

05

101520253035

<10 10-19 20-29 30-39 40-49 50-59 60-69 70-79 80+

First Nations Social Services Subsidy No-Subsidy

Preliminary AgePreliminary Age--Specific Prevalence Estimates Specific Prevalence Estimates According to Alberta Health Care Funding (1998)According to Alberta Health Care Funding (1998)

Svenson, unpublished

0

5

10

15

20

25

30

Age

Sta

ndar

dize

d Pe

rcen

t

Non-HispanicWhites

Non-HispanicBlack

MexicanAmerican

Non-HispanicWhite

Non-HispanicBlack

MexicanAmerican

Males Females

Impaired FastingGlucose

Undiagnosed DM

Diagnosed DM

NHANES IIINHANES III

PopulationPopulation--based screening for based screening for diabetes in Aboriginal communities diabetes in Aboriginal communities in Canadain Canada

• Kahnawake (Quebec):No blood tests, no epidemiology

• Sandy Lake (Ontario):1997, 10.7% in age 10+ (41% of 26%)

• James Bay Cree (Quebec):2001, 2.5% in age 10 + (10% of 15%)

• Province of Manitoba:1998, 2% of adults, 1/3 of 5%

Undiagnosed diabetes and diabetes risk Undiagnosed diabetes and diabetes risk by age group in an Alberta studyby age group in an Alberta study

Age group Undiagnosed Diabetes

IFG/IGT

0-9 0% 11.1%

10-19 0.7% 15.0%

20-29 2.3% 17.6%

30-39 2.6% 22.1%

40-49 3.2% 24.4%

50-59 5.2% 34.6%

>60 6.6% 37.2%

> 1000 Aboriginal individuals in AlbertaSharndeep N. Kaler*, Ellen L. Toth, University of Alberta

Preliminary Results

47%23%30%BMI (n = > 1000)

7%32%57%A1C (n = >1000)

4%24%70%Fasting Blood Glucose (n > 1000)

Diabetes or high risk

At riskNormalRisk Factor

Criteria:Fasting Glucose: at risk ≥5.7 ≤6.9 mmol/L, Diabetes ≥7.0mmol/LHbA1C: at risk ≥5.5 <6.1%, high risk ≥6.1%BMI: at risk ≥25 <30 kg/m2, high risk ≥30kg/m2

FASTING GLUCOSE, A1C and BMI

Does Does undiagnosedundiagnosed diabetes diabetes becomebecome diagnoseddiagnosed diabetes?diabetes?

Does IFG/IGT lead to diabetes?Does IFG/IGT lead to diabetes?

At risk IFG / IGT DM Complications Death

Prevention trialsPrevention trials

•• Success in IGT ptsSuccess in IGT pts……

DPP Study1. Lifestyle: 58%

reduction in diabetes

2. Metformin Gp: 31%reduction in diabetes

3. Incidence per 100 per/yr 11 placebo 7.8 metform4.8 lifestyle

DPP Res Group, NEJM 346:393,’02

Year

Cum

ulat

ive

inci

denc

eof

dia

bete

s (%

)

Placebo

Metformin

Lifestyle

Clinical/Individual ApproachClinical/Individual Approach

Intervention

Measurement

Education, counseling,risk factor modification

Weight, adiposity, lipidprofiles, family history

FBS, HbA1C

Early detection, counseling re: risks

HbA1C, Proteinuria, retinal exam, foot exam

Education, control glycemia & BP, ACE-I

CVD management,dialysis, infection Tx

CVD/renal function, retinal exam

Measurement

Intervention

Obesity rates, physicalactivity patterns, dietaryhabits, DM incidence

Health promotion -healthy lifestyles

Educate healthpersonnel, screening

Screening patterns,HbA1c at Dx, “late”diagnosis rate

Education, promoteoptimal clinical practice

% in education, complication screeningrates, use of ACE-I.

Case fatality rates,hospital LOS.

Specialist care system,home care supports

At risk IGT DM Complications Death

Public Health/Population Approach

Canadian Diabetes Strategy 2005Canadian Diabetes Strategy 2005--20102010New Component Costs for CDSNew Component Costs for CDS ($ millions)($ millions)

National Diabetes Surveillance System $12 (up from $10.8)

Research $50

Prevention and Promotion-National $50 (up from $41.8)

National Coordination $25 (up from $4.4)

Evaluation of Current Models $10Innovation Funds $100Translation $25Aboriginal Diabetes Initiative

– Primary Prevention – Clinical

$75 (up from $58)

$250

TOTAL $597 million(Up from $115 million)

Stewart Harris, May 2003

• Respect for human dignity.

• Respect for free and informed consent.

• Respect for vulnerable persons.“Vulnerable persons” ought to include those whose capacity for decision-making may be restricted or unduly influenced by sociocultural, socioeconomic, and/or sociohistorical realities

• Respect for privacy and confidentiality.

• Respect for justice and inclusiveness.

• Balancing harms and benefits.

• Minimizing harm / maximizing benefit.

Canadian TriCanadian Tri--Council Policy Statement: Council Policy Statement: Ethical conduct for research involving Ethical conduct for research involving humans: Guiding principles, Aug. 1998humans: Guiding principles, Aug. 1998

TCPS: Considerations for research TCPS: Considerations for research involving Aboriginal people/ involving Aboriginal people/ communitiescommunities

• Research may involve Aboriginal communities when it focuses on the community, its subgroups or individuals as members.

• Research may seek information on the characteristic beliefs, values, social structures, etc. that define group identity.

• Special moral considerations.

Researchers should consider the interests of the group when:

• Property or private information belonging to the group as a whole is studied or used (includes cultural properties, may include human tissue).

• Leaders of the group are involved in identifying potential participants;

• The research is designed to analyze or describe characteristics of the group; or

• Individuals are selected to speak on behalf of, or represent, the group.

TCPS: Considerations for research involving TCPS: Considerations for research involving Aboriginal people/communitiesAboriginal people/communities

TCPS: TCPS: ““Good PracticesGood Practices”” for research for research involving Aboriginal groupsinvolving Aboriginal groups

• Respect culture, traditions and knowledge.

• Work in partnership with the group.

• Consult members of the group who have expertise.

• Involve the group in the designing the project.

• Examine how the research can address group’s needs.

• Include viewpoints held by different segments of the group.

• Disclose research findings to the community first (i.e. before publishing final report).

World Health Organization (2004):World Health Organization (2004):Principles of ScreeningPrinciples of Screening

1. Is the disease a public health program?

2. Is there an acceptable treatment for the recognized disease?

3. Is there a recognizable latent or early symptomatic stage?

4. Is the natural history of the disease understood?

5. Is there a consensus on whom to treat?

6. Are facilities for diagnosis and treatment available and accessible?

7. Is there an economic balance between case finding and subsequent medical care?

8. Is the program sustainable?PATH, 2000; WHO, 2004.

American Diabetes Association (2004):American Diabetes Association (2004):Additional Principle for Diabetes Additional Principle for Diabetes ScreeningScreening

9. Treatment after early detection yields benefits superior to those obtained when treatment is delayed.

American Diabetes Association, 2004.

Screening in Aboriginal Communities:Screening in Aboriginal Communities:American Diabetes Association American Diabetes Association vsvs. . Canadian Diabetes AssociationCanadian Diabetes Association

ADA discourages screening in community settings because:

• failure of patients to pursue follow-up to confirm a positive or negative screen;

• low compliance with treatment recommendations; uncertain impact on long-term health;

• poorly targeted screening; and inappropriate testing ofthose at low risk or those already diagnosed

2003 Canadian Diabetes Association Practice Guidelines:

“Community-based diabetes screening programs should be established in Aboriginal communities.”

Screening in Aboriginal Communities:Screening in Aboriginal Communities:American Diabetes Association American Diabetes Association vsvs. . Canadian Diabetes AssociationCanadian Diabetes Association

PopulationPopulation--based screening for based screening for diabetes in Aboriginal communities:diabetes in Aboriginal communities:

Best practice?Best practice?

Screening for diabetes:

• Condition should be relatively easy and cheap to diagnose? YES

• Treatment and follow-up should be available??????

• Worthwhile?: Is early treatment cost effective?

Benefits of Diabetes Screening in Benefits of Diabetes Screening in Aboriginal Communities:Aboriginal Communities:

• There is a lot of undiagnosed diabetes• Diabetes is easy and relatively cheap

to test for.• Diagnosis might mean good treatment

can be provided.• Good treatment might mean

prevention of harmful and costly complications.

• Other risk assessment can be done.

Disadvantages of Diabetes Screening Disadvantages of Diabetes Screening in Aboriginal Communities:in Aboriginal Communities:

• There might not be access to good treatment• There is no proof that earlier diagnosis leads

to better treatment, less complications, or less costs.

• Individuals may not want to know if they have diabetes: they may fear labeling, consequences at work, or at home

• Communities may feel vulnerable and exposed, fear labeling.

• Costs of testing can be at the expense of general prevention activities or clinical care.

Aboriginal perceptions of diabetes:Aboriginal perceptions of diabetes:

• Many Aboriginal people consider diabetes an example of “white man’s illness,” a new, introduced disease similar to smallpox and tuberculosis in the past. The adoption of modern foods and the decline of hunting and fishing are widely believed to be the underlying causes of the epidemic.”

Young et al, 2000

Aboriginal perceptions of diabetes:Aboriginal perceptions of diabetes:

“It’s a disease that runs in many of our families. Too many of us feel there’s little to be done once you have been diagnosed…Especially men – they figure it’s a death sentence”

- Doug Cuthland, Little Pine First Nation

Mobile Diabetes Screening Initiative Mobile Diabetes Screening Initiative (M(Méétis communities in Alberta)tis communities in Alberta)

BRAIDBRAID: : BBelieving we can elieving we can RReduce educe AAboriginal boriginal

IIncidence of ncidence of DDiabetes iabetes (A single First Nation community in Alberta)(A single First Nation community in Alberta)

SLICKSLICK: : SScreening for creening for LLimbs, imbs, II--eyes, eyes,

CCardiovascular and ardiovascular and KKidney complications idney complications (First Nations communities in Alberta)(First Nations communities in Alberta)

MDSi, BRAID and SLICK:MDSi, BRAID and SLICK:

• Mediate geographic and economic barriers by taking a screening services to Aboriginal communities.

• Follow a model of shared care.

• Employ Aboriginal staff, where possible.

• Partner with communities.

• Consult community members who have expertise.

• Report findings to communities regularly and first, and seek their approval before dissemination.

• Help to build community-capacity.

• Incorporate Aboriginal perspectives of health, healing, collectivity and interconnectedness.

Ethical Tenets Guiding Medical Ethical Tenets Guiding Medical Research in North America: Research in North America: The Georgetown PrinciplesThe Georgetown Principles

• Beneficence

• Nonmaleficence

• Justice

• Autonomy

Moral Imperative: Respect for human dignity

The benefits of screening for diabetes in The benefits of screening for diabetes in Aboriginal communities outweigh potential Aboriginal communities outweigh potential harms:harms:

• Prioritizes service improvements for high-risk communities (justice).

• Alternatives to conventional methods for screening that mediate barriers (beneficence/non-maleficence).

• Opportunities for community empowerment, capacity-building, a return to traditional lifestyles (autonomy).

• Gives communities control over their health (autonomy).

• Returning to traditional culture presents an alternative solution when biomedicine offers no cure (autonomy, beneficence).

• Preservation of culture and future generations (autonomy, beneficence).

MEEGWETCH.

THANK YOU.THANK YOU.