Transcript Patient and Clinician Perceptions of the Feasibility and

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 mortality
Ref: 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
Patient
SUPPORTIVE
CARE
Sociocultural
Health
system
Cancer Outcome Disparities
Tools to assess unmet support needs
• Existing tools do not capture the culturallyspecific 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; AQOL4D 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
Alan Walker
Cancer Centre,
Darwin
Eurobodalla Cancer
Services, Moruya
Bega Oncology
Peter Mac,
Melbourne
Overview of Procedure
At completion of
implementation trial:
Introduce SCNAT-IP
(3-5 months)
• Staff Acceptability
Interview
• Staff Acceptability
Questionnaire (5 items)
Immediately after:
• Patient Acceptability Questions (3 items)
• Interview patients about experience of
SCNAT-IP
Data Analysis
Study Component Analysis
Data Analysis
Acceptability ratings Descriptive statistics
Test of association
with Acceptability
Non-parametric
statistics
Patient and Staff
Interviews
Thematic Analysis
(e.g. Mann W-U, Kruksal
Wallis, Spearman’s r)
Results
Participants
36/45 Patients consented (87% Response Rate)
Aged 34-76yrs (Mean= 54 years)
Participant Site
AWCC (Darwin)
Peter Mac
Southern NSW LHD
n
20
12
4
%
56%
33%
12%
Participants
Participant Cancer Type
n
Breast
13
Colorectal
7
Head & Neck
6
Lung
3
Gynaecological
2
NHL
1
Haematological
1
Other
3
%
36%
19%
17%
8%
6%
3%
3%
8%
Participants
Treatment Status
Receiving treatment
Newly diagnosed
Follow-up care
n
17
5
14
%
47
14
39
Participants
Main language spoken at home
n
English
21
Indigenous language
15
%
58
42
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 3 4 5 6 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.
a week just to keep an eye on you”
“Once a month”
“Each stage”
“Every time I go in”
“Every sixth months”
“Once
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)
Gender
Female
Male
10
0
Clinical Role
Oncology Social Worker
Nurse care coordinator
Clinical trial coordinator
6
3
1
Staff Acceptability (n=10)
Number of staff
SCNAT-IP is useful to my clinical practice
10
9
8
7
6
5
4
3
2
1
0
Strongly
disagree
Disagree
Neutral
Agree
Strongly
agree
Staff Acceptability (n=10)
Number of Staff
SCNAT-IP is feasible to use routinely
10
9
8
7
6
5
4
3
2
1
0
Strongly
disagree
Disagree
Neutral
Agree
Strongly
agree
Staff Acceptability (n=10)
Number of Staff
Patients generally find the SCNAT-IP
acceptable
10
9
8
7
6
5
4
3
2
1
0
Strongly
disagree
Disagree
Neutral
Agree
Strongly
agree
Staff Acceptability (n=10)
Number of Staff
SCNAT-IP is easy to score/interpret
10
9
8
7
6
5
4
3
2
1
0
Strongly
disagree
Disagree
Neutral
Agree
Strongly
agree
Staff Acceptability (n=10)
Number of Staff
My clinic should continue to screen all
Indigenous patients using SCNAT-IP
10
9
8
7
6
5
4
3
2
1
0
Strongly
disagree
Disagree
Neutral
Agree
Strongly
agree
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
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.”
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
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
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)