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.

Yip and the SCNAT-IP Implementation Group.

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 mortalityRef: Australian Institute of Health and Welfare. Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview. Canberra, Australia.: AIHW, 2013.

Cancer and Indigenous Australians

Cancer Outcome Disparities

Health system

Patient

Socio-cultural

SUPPORTIVE CARE

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)

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

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 clinical settings

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)

:

Methods

Aim

Explore staff and patient perspectives on feasibility and utility of the SCNAT-IP in routine care.

Participants

a) Indigenous Cancer Patients

b) Oncology health professionals

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)

Study Sites

Peter Mac,Melbourne

Bega Oncology

Eurobodalla Cancer Services, Moruya

Alan Walker Cancer Centre, Darwin

Overview of Procedure

Introduce SCNAT-IP

(3-5 months)

Immediately after:

• Patient Acceptability Questions (3 items)

• Interview patients about experience of SCNAT-IP

At completion of implementation trial:

• Staff Acceptability Interview

• Staff Acceptability Questionnaire (5 items)

Data Analysis

Data AnalysisStudy Component AnalysisAcceptability ratings Descriptive statistics

Test of association with Acceptability

Non-parametric statistics (e.g. Mann W-U, Kruksal Wallis, Spearman’s r)

Patient and Staff Interviews

Thematic Analysis

Results

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%

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%

Treatment Status

n %

Receiving treatment 17 47

Newly diagnosed 5 14

Follow-up care 14 39

Participants

Main language spoken at home

n %

English21 58

Indigenous language15 42

Participants

Patient Acceptability

1. I like being asked about needs2. Today was a good time to complete needs

assessment3. Helpful for identifying what I needed help with.

0 1 2 3 4 56 7 8 9 10

Not at all Very much so

Patient Acceptability

Range=

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)

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

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)

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.

Patient Interviews

Timing

Many patients said:• Satisfied with timing

Some patients:• Would have preferred earlier assessment• But not too early!

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”

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)

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

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)

Staff Participants

Evaluation Cohort(n=10)

GenderFemaleMale

100

Clinical RoleOncology Social Worker Nurse care coordinatorClinical trial coordinator

631

Staff Acceptability (n=10)

0

1

2

3

4

5

6

7

8

9

10

Nu

mb

er o

f st

aff

Stronglydisagree

Disagree Neutral Agree Stronglyagree

SCNAT-IP is useful to my clinical practice

0

1

2

3

4

5

6

7

8

9

10

Nu

mb

er o

f S

taff

Stronglydisagree

Disagree Neutral Agree Stronglyagree

SCNAT-IP is feasible to use routinely

Staff Acceptability (n=10)

0

1

2

3

4

5

6

7

8

9

10

Nu

mb

er o

f S

taff

Stronglydisagree

Disagree Neutral Agree Stronglyagree

Patients generally find the SCNAT-IP acceptable

Staff Acceptability (n=10)

0

1

2

3

4

5

6

7

8

9

10

Nu

mb

er o

f S

taff

Stronglydisagree

Disagree Neutral Agree Stronglyagree

SCNAT-IP is easy to score/interpret

Staff Acceptability (n=10)

0

1

2

3

4

5

6

7

8

9

10

Nu

mb

er o

f S

taff

Stronglydisagree

Disagree Neutral Agree Stronglyagree

My clinic should continue to screen all Indigenous patients using SCNAT-IP

Staff Acceptability (n=10)

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

“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.”

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’)

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

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

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

Staff Interviews

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?

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.

Future Directions

• National Unmet Needs Survey currently underway

• Minor revisions to introduction and format• SCNAT-IP user website• Endorsement from peak cancer

organisations

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

ResourcesSCNAT-IP User Website• www.menzies.edu.au/supportivecaretool

PublicationsDevelopment - 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)