Download Inequities in cancer care: barriers and lessons

Inequities in cancer care:
barriers and lessons
Christina Sinding, PhD
Department of Health, Aging and Society &
School of Social Work
A generation lost between
two neighbourhoods…
Social
advantage
Health advantage
=
Social
Disadvantage
Health disadvantage
“HEALTH EQUITY is achieved
when people who are socially advantaged
are not systematically healthier
than people who are socially disadvantaged”
(Braveman 2003).
Social
Advantage
Social
Disadvantage
Longer survival
after a cancer dx
Shorter survival
after a cancer dx
Social
Advantage
Social
Disadvantage
Stage at
diagnosis
(socially
disadvantaged,
higher stage at dx)
Longer
survival
Shorter
survival
Social
Disadvantage
“Differences in
access to optimal
treatment explain
at least part of the
association between
social deprivation
and cancer survival.”
Woods, Rachet and Coleman (2005)
Shorter
survival
Canadian literature on inequity in
access to cancer services
Maddison, A. R., Asada,Y., & Urquhart, R. (2011). Cancer Causes & Control, 22(3), 359-366.
SURGERY
(9)
MED ONC
CONSULT
(7)
SYSTEMIC
THERAPY
(6)
RAD ONC
CONSULT
(5)
RADIO
THERAPY
(11)
END OF
LIFE CARE
(11)
INCOME
5
3
4
2
7
5
LOCATION
7
5
5
4
10
8
EDUCATION
3
2
3
1
2
0
SEX
4
3
2
0
3
6
AGE
8
7
6
5
9
10
ETHNICITY
0
0
0
0
0
1
Fifteen studies also examined access to care in terms of wait times.
No studies on follow up care, or access to medications.
Research in cancer care disparities in countries with
universal healthcare: A map of the field
Christina Sinding, Rachel Warren, Donna Fitzpatrick Lewis, Jonathan Sussman: in progress
ANY
TX
(X)
SPECIALIZED
CANCER
CARE (14)
SURGERY SYSTEMIC
(46)
THERAPY
(27)
RADIO
THERAPY
(33)
HORMONE
TX (8)
SUPPORTIVE
CARE (4)
END
OF
LIFE
CARE
(7)
INCOME
7
28
18
18
5
3
5
LOCATION
6
12
5
11
1
1
2
SEX
2
6
5
6
0
3
AGE
6
18
12
17
4
1
5
ETHNICITY
0
1
2
1
1
0
0
INDIGENOUS
STATUS
2
6
3
3
0
0
3
EDUCATION
A few studies have examined tests and exams (3) and home care (1).
No studies so far have examined follow up / survivorship care.
Research in cancer care disparities in countries with
universal healthcare: A map of the field
Christina Sinding, Rachel Warren, Donna Fitzpatrick Lewis, Jonathan Sussman: in progress
UK
23
CANADA
(14)
AUSTRALIA
(10)
NETHER
LANDS
(5)
SWEDEN
(5)
FRANCE
(4)
NEW
ZEALAND
(4)
17
7
9
3
5
2
1
3
9
2
1
1
1
0
SEX
8
4
0
0
1
0
0
AGE
13
8
3
2
2
4
0
ETHNICITY
3
1
1
0
0
0
0
INDIGENOUS
STATUS
0
0
3
0
0
0
4
INCOME
LOCATION
ITALY
GERMANY
SWITZ.
NORWAY
SPAIN… 3,2,1
EDUCATION
0
No studies examine: immigrant status; intellectual or cognitive disability; literacy or fluency in the
language of care; sexual or gender identity; social status as defined by institutions (ex: prison
populations; people living in long term care facilities; receiving social assistance etc.)
Social
Disadvantage
Less optimal
treatment & care
“. . . the transportation thing . . . That is a problem cause there’s days
I don’t have the money . . . One week I had a bone scan one day, the
next day I had some other tests, then I had another test the third
day and chemo . . . I [would] phone and say, ‘I’m sorry but, it’s
not like I don’t want to come but . . .’ I was only getting $500
[a month] at the time [from the provincial income security
program] . . . I go the [the cancer treatment centre] it’s $10 there,
$10 back. If I go three times a week there’s $60, four times $60 is
$240.” (Deanna, late 40s, living on her own)
Lower-income women with breast cancer: Interacting with
cancer treatment and income security systems.
Judy Gould (2004). Canadian Woman Studies, 24(1), 31-36.
“Quality of life with chemo didn’t appeal to me at all. I live alone, I
like it and I know many people who have gone through it and
depended on whoever’s handy … I know my hairdresser told me
about her friend and his children abandoned him and he, of course,
didn’t have much to eat even” (Catherine, diagnosed at 81).
Cancer care from the perspectives of older women.
Oncology Nursing Forum (2005), 32(6), 1169-1175.
Christina Sinding, Jennifer Wiernikowski, Jane Aronson
X’s attitudes
about the
Xs are
body or the
more likely treatment
to
might lead to
experience differential
fear and
treatments
denial
related to
cancer
Social
Disadvantage
Xs are
more likely
to have a
defeatist
attitude
towards
illness
Xs are more
likely than Ys
Xs might be
to mistrust
more fearful
the healthcare
or adverse to
system
specific
treatments
than Ys
Less optimal
treatment & care
Many theories locate disparity with
patients – the story is often more complex
Stigmas and Silos:
Care for People with
Serious Mental Illness and Cancer
St. Joseph’s Healthcare Hamilton:
Jimena Siliker, Lori Lawson, Claire Kislinsky, Christine Stanzlik Elliot,
Jodi Peria, John O’Neill
McMaster University: Christina Sinding, Lisa Watt, Pat Miller
University Health Network: Patti McGillicuddy
People with mental
health diagnoses, even
when presenting with
physical health
concerns, were often
channeled to mental
health services.
Creative: thepublicstudio.ca
‘Diagnostic overshadowing’ … providers attribute reports of physical
symptoms to the mental illness diagnosis, and overlook or dismiss
physical health problems.
Separation of physical and mental healthcare within and across
organizations; lack of clarity about who is responsible to detect and
address physical health problems.
In an ideal model, mental and physical healthcare would be integrated
structurally, financially, and clinically. Yet much can be achieved in
clinical integration even when the other two are in short supply…
Stigmas and silos: Social workers’ accounts of care for people with serious
mental illness and cancer. Social Work in Mental Health, 11(3), 288-309.
Sinding, C., Watt, L., Miller, P., Silliker, J., Lawson, L., Kislinsky, C., et al. (2013).
Xs
participate
less actively
than Ys in
their
healthcare
Social
Disadvantage
Some Xs are less
active in seeking
information or
asking for
healthcare
resources than Ys
Less optimal
treatment & care
Sometimes disparity attributed to patients’
actions and inaction in relation to care…
a problematic theory for many reasons
‘Successful’ patient involvement is enabled by (requires?)….
professional work roles
experience & confidence negotiating institutions
medical knowledge
knowledge of the healthcare system
material resources
ease in speaking English
Of time and troubles: Patient involvement and the production of health care disparities
Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine (2012)16(4), 400-417.
Christina Sinding, Pat Miller, Pamela Hudak, Sue Keller-Olaman, Jonathan Sussman
Uncritical
promotion
of ‘the
involved
patient’ - ?
Certain
treatment
decision
practices - ?
Social
Disadvantage
Physician message: ‘you do not have to
have chemotherapy’; it is ‘up to you’
taken as an indication that treatment
was not warranted.
“Had they told me, ‘you must have
it’ then I would have dealt with it.”
(Sue)
Less optimal
treatment & care
Uncritical
promotion
of ‘the
involved
patient’ - ?
Certain
treatment
decision
practices - ?
Social
Disadvantage
“Treatments related to best
outcomes are less likely to be
chosen by certain groups of
women” (Polack et al 2007, p. 158).
Ethnically diverse and
disadvantaged women, given
greater input into decision making,
may choose less than ideal
treatments.
Polacek, G. N., Ramos, M. C., & Ferrer, R. L.
(2007). Breast cancer disparities and
decision-making among U.S. women.
Patient Education and Counseling,
65(2), 158-165.
Less optimal
treatment & care
Negotiating Equity:
Toward the elimination of disparities in cancer care
Christina Sinding
Diane Burns
Sue Keller-Olaman
Jonathan Sussman
COHORT STUDY TEAM
Department of Health, Aging & Society and
School of Social Work
McMaster University, Hamilton, Ontario
Independent researcher, Hamilton, Ontario
Ontario Tobacco Research Unit
Centre for Addiction and Mental Health, Toronto, Ontario
Radiation Oncology
Juravinski Cancer Program, Hamilton, Ontario
COHORT STUDY QUESTION
Among female patients with breast cancer with a given
level of need, are there associations between
socioeconomic status and receipt of cancer treatments
and supportive care services?
COHORT STUDY METHODS
300 patients; individual level demographic data collected from
patient surveys [income, education completed, usual occupation]
Indicators of need for cancer treatments (stage, hormonal status)
from provincial and cancer centre registries
Indicators of supportive care need (measures of distress, anxiety)
from patient surveys and cancer centre databases
Utilization data from OPIS for:
 type of surgery received (local excision; unilateral or bilateral mastectomy)
 chemotherapy received (yes/ no; regimen; number of treatments received)
 radiation received (yes/ no; number of treatments)
 supportive care received (yes/no; number of sessions)
 dates for all points of contact (referral date, date of first consultation, all
treatment and service dates)
Analysis is examining whether, for a given level of need, receipt of
treatments and services varies by patient income, education or occupation
Negotiating Equity:
Toward the elimination of disparities in cancer care
Christina Sinding Department of Health, Aging & Society, School of Social Work
McMaster University, Hamilton, Ontario
Jane Aronson
School of Social Work, McMaster University, Hamilton, Ontario
Diane Burns
Independent researcher, Hamilton, Ontario
Margaret Fitch Oncology Nursing and Supportive Care,
Odette Cancer Centre,
Sunnybrook Health Sciences Centre ,Toronto, Ontario
Pamela Hudak Centre for Research on Inner City Health
St. Michael's Hospital, Toronto, Ontario
Sue Keller-Olaman Ontario Tobacco Research Unit
Centre for Addiction and Mental Health, Toronto, Ontario
Linda Learn
Social Work, Supportive & Palliative Care,
Juravinski Cancer Program, Hamilton, Ontario
Patti McGillicuddy Professional Practice, Allied Health/Health Professions,
University Health Network, Toronto
Jonathan Sussman Radiation Oncology
Juravinski Cancer Program, Hamilton, Ontario
Jennifer Wiernikowski Nursing, Juravinski Cancer Program, Hamilton, Ontario
Interview Study:
Gathering women’s stories
In depth interviews focus on ‘what it
takes’ to get (through) cancer care
– on the work women do, to get the
treatment and support they need
from providers and care systems.
Analysis explores
similarities and
differences in
women’s
experience
related to social
location and
resources (income,
education, age,
occupation, etc).
Observation Study
Observations and short
interviews with
professionals at a
cancer centre, and
review of documents,
provide understanding
of the context of care.
Negotiating Equity:
Toward the elimination of
disparities in cancer care
Knowledge Exchange for
Equity Network
KEEN members are front-line
professionals committed to
equity in cancer care. They:
 share insights and
experiences from their work
 advise the overall study,
helping interpret findings
Funded by the Canadian Institutes
of Health Research
 act as translators and
catalysts, discussing study
findings in their own settings
and identifying opportunities for
change
Cohort Study
Information about patients’
social status (income, education,
occupation, age) is linked with
information in their charts, so we can
learn about any differences in
treatment and supportive care related
to social status.