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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.