Cancer and Indigenous Australians

1. Patient and Clinician Perceptions of The Feasibility and Utility of Routine Unmet Needs Screening for Indigenous Australians with Cancer. G.Garvey, B. Thewes, V. He, E. Davies, A. Girgis, P. Valery, K. Giam, A. Hocking, J. Jackson, V. Jones, D. Yipand the SCNAT-IPImplementation Group.

2. Cancer and Indigenous Australians • Higher cancer incidence amongst Indigenous Australians • Diagnosed at later stages • More poor prognosis cancers(eg. Lung, Unknown Primary) • Less likely to receive optimal treatment • Higher rates of comorbidity • Up to 45% worse mortality Ref: Australian Institute of Health and Welfare. Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview. Canberra, Australia.: AIHW, 2013.

3. Cancer and Indigenous Australians SUPPORTIVE CARE

4. Tools to assess unmet support needs • Existing tools do not capture the culturally-specific needs of Indigenous people • Garvey et al, (2012) suitability of the SCNS-SF34 for Indigenous people with cancer. • Not suited for people with low literacy • Wording culturally inappropriate (eg. Feelings about death and dying) • Redundant (eg. Choice about which specialist you see) • Some needs not covered (eg. Having an Indigenous person to talk to)

5. Development of the SCNAT-IP Supportive Care Needs Assessment Tool for-Indigenous People (SCNAT-IP) • 27 items • Verbally-administered adaptation of SCNS-SF34 • Every item changed (re-worded or deleted) • Developed by Indigenous focus groups and key informant interviews

6. Psychometrics Initial validation study 248 Indigenous cancer patients in QLD • Good psychometric properties • Construct validity • Internal consistency (α =0.70 - 0.89) • Convergent and divergent validity (DT r=0.60; AQOL-4D r= -0.56) • HOWEVER, no prior use in clinicalsettings Ref Garvey G, Beesley VL, Janda M, O'Rourke P, Green AC, Valery PC. The supportive care needs assessment tool for Indigenous people (SCNAT-IP) with cancer: psychometric properties.(Submitted, JCO) :

7. Methods Aim Explore staff and patient perspectives on feasibility and utility of the SCNAT-IP in routine care. Participants • Indigenous Cancer Patients • Oncology health professionals

8. Methods Patient Eligibility Criteria • Aboriginal and/or Torres Strait Islander origin; • Diagnosed in the past 5 years • Malignant cancer at any disease stage; • About to receive, in active treatment or follow-up care; • Aged 18 years and over; • Physically and mentally willing and able to participate; and • Sufficient English fluency to understand verbally presented study documents (AWCC interpreters available)

9. Study Sites Alan Walker Cancer Centre, Darwin Eurobodalla Cancer Services, Moruya Bega Oncology Peter Mac, Melbourne

10. At completion of implementation trial: • Staff Acceptability Interview • Staff Acceptability Questionnaire (5 items) Overview of Procedure Introduce SCNAT-IP (3-5 months) Immediately after: • Patient Acceptability Questions (3 items) • Interview patients about experience of SCNAT-IP

11. Data Analysis Data Analysis

12. Results

13. Participants 36/45 Patients consented (87% Response Rate) Aged 34-76yrs (Mean= 54 years) Participant Site n % AWCC (Darwin) 20 56% Peter Mac 12 33% Southern NSW LHD 4 12%

14. Participants Participant Cancer Type n % Breast 13 36% Colorectal 7 19% Head & Neck 6 17% Lung 3 8% Gynaecological 2 6% NHL 1 3% Haematological 1 3% Other 3 8%

15. Participants Treatment Status n % Receiving treatment 17 47 Newly diagnosed 5 14 Follow-up care 14 39

16. Participants Main language spoken at home n % English 21 58 Indigenous language 15 42

17. Patient Acceptability 1. I like being asked about needs 2. Today was a good time to complete needs assessment 3. Helpful for identifying what I needed help with. 0 1 2 34 5 6 7 8 9 10 Not at all  Very much so  

18. Patient Acceptability   Range=

19. Associations with Acceptability • Being pre-surgery • Timing (p=0.03) • Helpfulness (p=0.01) • Higher levels of education • Timing (p=0.02) • Overall Acceptability (p=0.00) • Having an unspecified (other) comorbidity • Liking (p=0.03) • Timing (p=0.03) • Helpfulness (p=0.04) • Overall Acceptability (p=0.00)

20. Patient Interviews General Acceptability and Format. Many patients said: • Liked being asked about needs • Did not mind time taken to answer • Were satisfied with questions and format • Appreciated offer of services Some said: • Felt “empowered” • Felt heard • Appreciated health professionals were interested

21. Patient Interviews ‘It’s made me feel good that someone’s showing interest, you know. That’s there people out there who are trying to improve things, not only for cancer patients but for Indigenous people.’ (Male, Head and Neck Cancer, Aged 45) ‘I actually appreciated it, that the effort was being made’ (Female , Breast cancer, Aged 55)

22. Patient Interviews • One patient “felt uptight” • One patient said process not helpful • Some described private nature of Indigenous people not talking openly about problems and advocated “roundabout” methods.

23. Patient Interviews Timing Many patients said: • Satisfied with timing Some patients: • Would have preferred earlier assessment • But not too early!

24. Patient Interviews Frequency Some said: • Once only near beginning of treatment Many patients: • Acknowledged need to reassess because needs change • But less consensus on exact frequency. “Once a week just to keep an eye on you” “Once a month” “Each stage” “Every time I go in” “Every sixth months”

25. Patient Interviews Perceived Benefits of Screening ‘Yes she [the social worker] gave me some information because of some of my answers. I don’t think I would have got that information otherwise.’ (Female, Gynaecological cancer, Aged 51 ) ‘I have now been referred to psychology and what I said is, “I wish this had of happened 2 years ago” . (Female, Breast, Aged 55)

26. Patient Interviews Attitudes to Universal Screening for Indigenous Cancer Patients Many patients: • Supported universal screening because: • Educated staff about Indigenous patient experience • Educated patients about services and what to expect Some patients: • Important for cultural reasons (shyness or reluctance to share problems) • Thought it should be optional • Relevant regardless of race • Altruistic reasons

27. Patient Interviews ‘A lot of them [staff] probably don’t understand .. there is problem like family problem, money problems.’ (Female, Lung cancer, Age 47) ‘I’m pretty articulate and pretty aware of what the processes are within hospitals and so forth, but for somebody else you know, I think it’s something that needs to be done’ (Male, Bowel Cancer, Age 61)

28. Staff Participants

29. Staff Acceptability (n=10) SCNAT-IP is useful to my clinical practice

30. Staff Acceptability (n=10) SCNAT-IP is feasible to use routinely

31. Staff Acceptability (n=10) Patients generally find the SCNAT-IP acceptable

32. Staff Acceptability (n=10) SCNAT-IP is easy to score/interpret

33. Staff Acceptability (n=10) My clinic should continue to screen all Indigenous patients using SCNAT-IP

34. Staff Interviews Perceived Benefits • Comprehensive / systematic nature • Verbal format • Opportunity for early intervention • Builds rapport & establishes expectations • Positive relationship with social work • Helps staff members less experienced with working with Indigenous patients

35. Staff Interviews “It provides patients with the opportunity to identify their needs that may not be apparent in more casual interactions” “It picks up things that I think that would never have come up until we were at a real crisis point.”

36. Staff Interviews Perceived Barriers • Time • Logistics of making time for an interview • Comprehension issues for patients with low English fluency need to explain /clarify meaning • Response format (‘little need’ versus ‘some need’)

37. Staff Interviews Impact on workload • Most identified that some additional time required • No staff reported major impact on workload • Some staff saw time savings (e.g. avoids crisis) • Experience with screening tools helped reduce impact on workload

38. Staff Interviews Impact on team communication and referrals • Improved communication with medical/nursing staff (e.g. in-patients) • Two sites improved liaison with Indigenous Health Workers • Improves communication between patients and medical staff and • Improved awareness of community-based services in regional/rural areas • Some reported little or no impact

39. Staff Interviews Staff Recommendations for Future Use • Should be used early • Re-assessment at later time points • More advice for staff on time needed • Revised introductory section • Specific suggestions for minor changes to structure/wording

40. Limitations • Up to half of all potentially eligible Indigenous patients were not approached for study (n= 44 Combined sample) • Inaccuracy of Indigenous status recording in medical records • Early onset of wet season in NT • Potential impact on generalisability?

41. Conclusions • Majority of patients surveyed: • found the SCNAT-IP acceptable; • welcomed universal unmet needs screening; • Majority of staff surveyed: • found the tool acceptable and feasible • support continued use of SCNAT-IP; • Feasible and useful in a variety of clinical settings; • Early screening with reassessment; • Health care interpreters for people with low English fluency; • More research needed involving larger samples in small rural and regional cancer clinics.

42. Future Directions • National Unmet Needs Survey currently underway • Minor revisions to introduction and format • SCNAT-IP user website • Endorsement from peak cancer organisations

43. Acknowledgements Thank you to: • Natasha Roe (IHLO, AWCC) • Ivan Gooloogong (AHW, SNSW LHD) • Gwenda Stuart (AHW, SNSW LHD) • Mrs Margaret Lawton, Ms Celia Moore (Consumer Representatives) • Dr Mick Adams (AIATSIS) • Staff and patients who participated in this trial • Funding Body

44. Resources SCNAT-IP User Website • www.menzies.edu.au/supportivecaretool Publications Development - Garvey G, Beesley VL, Janda M, Jacka C, Green A, O’Rourke P, Valery PC. (2012) The development of a supportive care needs assessment tool for Indigenous people with cancer. BMC Cancer, 12: 300 Psychometric Validation - Garvey G, Beesley VL, Janda M, O'Rourke P, Green AC, Valery PC. The supportive care needs assessment tool for Indigenous people (SCNAT-IP) with cancer: psychometric properties.(Submitted, JCO)