is it the most frequent unmet supportive care needs that predict caregivers’ anxiety ... ·...
TRANSCRIPT
Is it the most frequent unmet supportive care needs
that predict caregivers’ anxiety and depression?
Results from Australia’s Partners and Caregivers
Longitudinal Well-being Study
Dr Sylvie Lambert, RN, PhD Assistant Professor, Ingram School of Nursing, McGill University, Montreal
Research Associate, St. Mary’s Research Centre, Montreal
Fonds de Recherche du Québec-Santé (FRQS) Research Scholar –Junior 1
Impact of cancer on caregivers
• Historically, informal caregivers have always played a major role in providing
cancer care
• Worldwide, as the burden of cancer care is no longer manageable through
formal care settings alone, there is a gradual shift towards community-based
care
– In this context, caregivers are an essential extension of the formal health
care system and provide 70%-80% of patients’ care
– Economic value of this support estimated in the billions
• Caregivers’ involvement not only reduces the demands on health care
system, but positively impacts on how well patients adjust to the illness
• Despite their value, caregivers remain largely a hidden workforce operating
with little to no formal support
This comes at a particularly high cost to caregivers’ health
Impact of cancer
on partners and
caregivers
Emotional problems and
reactions (e.g., anxiety
and depression)
Physical health problems
(e.g., fatigue, pain, loss of
physical strength, loss of
appetite, weight loss)
Social problems
(e.g., hard to concentrate
at work, balancing multiple
roles, difficulty to pay bills,
change in employment status)
Burden related to
responsibilities (e.g.,
assisting with mobility,
managing patient’s
symptoms)
Stenberg et al. (2010). Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncology, 19(10), 1013-
1025
• The responsibility that caregivers take on has prompted in-depth
documentation into the kind of support they need
1
2
3
Limitations of current research
• Cross-sectional
• Small samples
• Focus on caregivers of women with breast cancer or
men with prostate cancer
• United States, Europe & Canada
Partners & Caregivers Well-being Study
• Longitudinal study of partners and caregivers of
patients diagnosed with one of the 8 most common
cancers in Australia
Main aim:
• Describe changes in anxiety, depression, quality of
life, and unmet needs and identify variables
associated with these outcomes
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Partners & Caregivers study
Multi-dimensional outcomes: Self-administered scannable survey • Anxiety: Hospital Anxiety & Depression Scale • Depression: Hospital Anxiety & Depression Scale • Perceived needs: Supportive Care Needs Survey- Partners &
Caregivers • Quality of life: SF-12 • Coping: Brief Cope • Social support: MOS Social Support Survey • Caregiver burden, role involvement and financial strain • Demographics, patient disease and treatment characteristics
Wave 1 6 months
(n=547) Wave 2 1 year (n=521)
Wave 3 2 years (n=442)
Wave 5 5 years (n=350) Wave 4
3.5 years (n= 386)
Supportive Care Needs Survey – Partners
and Caregivers
Girgis, A., Lambert, S., Lecathelinais, C. (2010). The Supportive Care Needs Survey for Partners and Caregivers of Cancer Survivors: Development and Psychometric Evaluation. Psycho-oncology.
Demographics (n=219)
Demographics %
Gender: Female 73
Age: 60+ 62
Country of origin: Australia 80
Marital Status: Married 93
Relationship to cancer patient: Partner 91
Education: Primary school/secondary not completed 17
Secondary school 24
Trade, TAFE, University 48
Employment: Employed/student 49
Unemployed/retired 34
Household duties 8
Current Household Income: <$500 pw 24
$500-$799 pw 25
$800-1,000 pw 15
>$1,000 pw 21
Diagnosis of the patients (n= 219)
Colorectal 12%
Breast 16%
Prostate 35%
Melanoma 12%
Lung 2%
NHL 14%
Head and neck 8%
Leukemia 1%
Colorectal
Breast
Prostate
Melanoma
Lung
NHL
Head and neck
Leukemia
How many caregivers need more help with at
least one unmet need?
% S
am
ple
Average number of unmet
needs reported
Wave #1
6 months 7.0 (SD= 10.00)
Wave #2
1 year 4.3 (SD = 7.8)
Wave #3
2 years 3.2 (SD = 6.4)
Wave #4
3.5 years 2.9 (SD = 7.0)
Wave #5
5 years
4.2 (SD = 8.7)
Waves
50.7% 59.4% 41.1%
0
10
20
30
40
50
60
70
80
90
100
Wave #1 Wave #2 Wave #3 Wave #4 Wave #5
Wave #1
Wave #2
Wave #3
Wave #4
Wave #5
34.7% 40.6%
6 months 1 year 2 years 3.5 years 5 years
What kind of help do caregivers need?
0
5
10
15
20
25
30
Wave #1 Wave #2 Wave #3 Wave #4 Wave #5
Information need
Health services need
Work need
Emotional need
Unmet need domains
Wave
Standardized
average
number of
unmet needs
6 months 1 year 2 years 3.5 years 5 years
What kind of help do caregivers need? Top unmet needs at 6 months (Wave 1)
0
5
10
15
20
25
30
35
Wave 1
30%
0
5
10
15
20
25
30
35
Wave 1 Wave 2
What kind of help do caregivers need?
Top unmet needs at 1 year (Wave 2)
0
5
10
15
20
25
30
35
Wave 1
Wave 2
Wave 3
Wave 4
Wave 5
What kind of help do caregivers need?
Top unmet needs from 6 months and 5 years
Core, stable unmet needs
What kind of help do caregivers need?
Core, stable unmet needs across time
Core unmet needs
14-Reduce stress in the person with cancer
31-Manage concerns cancer coming back
32-Impact cancer had on relationship
33-Experience of person with cancer
34-Balance needs
35-Adjust changes in person’s body
36-Addres problems with sex life
39-Work through feelings about death
0
5
10
15
20
25
30
35
Wave 1
Wave 2
Wave 3
Wave 4
Wave 5
Top unmet needs from 6 months and 5 years
Prevalent unmet needs
Are the most frequent
unmet supportive care
needs the best predictors of
caregivers’ anxiety and depression?
Unmet needs
Identify most prevalent unmet supportive care needs
Caregiver intervention
Developed often to address most prevalent unmet supportive care needs
Efficacy of caregiver interventions
Anxiety
Depression
Stress
Distress
Burden
Implications
Hospital Anxiety and Depression Scale (HADS)
7-item anxiety
and depression
subscale
Subscale scores
range from 0-21
Scores > 7-8 are
clinically
significant
Minimal clinically
significant
difference = 1.5
0.00
0.20
0.40
0.60
0.80
1.00
1.20
1.40
1.60
1.80
0
5
10
15
20
25
30
35
% VIP (PLS)
Are the most prevalent needs those most associated
with caregivers’ anxiety and depression at 6 months?
6 months
Top 10
% of
caregivers
needing
more help
with a need
item
Results
of PLS
0.00
0.20
0.40
0.60
0.80
1.00
1.20
1.40
1.60
1.80
2.00
0
5
10
15
20
25
% VIP (Wave 2)
Are the most prevalent needs those most associated
with caregivers’ anxiety and depression at 1 year? Top 10
% of
caregivers
needing
more help
with a need
item
Results
of PLS
Subset of 11/44 unmet needs with a value < 1
Not prevalent
1-Access information on carer needs 18-Access info fertility problems
2-Access information on prognosis 20-Find accessible hospital parking
9-Be involved in person’s care 24-Obtain life and/or travel
insurance
10-Discuss concerns with MDs 25-Access legal services
11-Feel confident MDs talking to each
other
43-Explore spiritual beliefs
12-Ensure case manager coordinate
services
Subset of 33/44 unmet needs further
considered for regression analyses Core unmet needs Prevalent Not prevalent
14-Reduce stress in
the person with cancer
15-Look after your
own health 38-Get emotional support
for loved ones
30-Handle topic of cancer in social
situations
31-Manage concerns
cancer coming back
37-Get emotional
support for self
26-Communicate with person
caring for
5-Access info person’s physical
needs
32-Impact cancer had
on relationship
42-Make decisions in
context of uncertainty
27-Communicate with the
family
6-Access info treatment side-effects
33-Experience of
person with cancer
40-Deal with lack of
acknowledgment
8-Access health care services
34-Balance needs 44-Find meaning 4-Access info alternative therapies
35-Adjust changes in
person’s body
41-Cope person’s recovery
not as expected
13-Make sure complaints addressed
36-Addres problems
with sex life
7-Obtain best medical care 3-Access info services for carers
39-Work through
feelings about death
23-Find financial support 16-Obtain adequate pain control
22-Impact of cancer on
carer working life
21-Adapt changes person’s working
life
28-Get support from your
family
19-Care on a practical level, e.g.,
bathing
29-Talk to other carers 17-Fears about deterioration
Regression analysis: Depression
42-Make decisions in context of uncertainty
22- Impact of cancer on carer
working life
42-Make decisions in context
of uncertainty
15-Look after your own health
40-Deal with lack of
acknowledgment
17 - Address fears about
deterioration
41-Cope with recovery not as expected
23-Find financial support
15-Look after your own health
42-Make decisions in context of uncertainty
6 months 1 year 2 year 5 year 3.5 years
- All unmet needs lead to a difference greater than 1.5 (1.57-3.50)
Regression analysis: Anxiety
42-Make decisions in context of
uncertainty*
21-Adapt changes person’s
working life
39-Work through feelings about
death
17 - Address fears about deterioration
22- Impact of cancer on
carer working life*
15-Look after your
own health*
39-Work through feelings
about death
31-Manage concerns cancer coming back
31-Manage concerns cancer
coming back
37-Get emotional support for self
14-Reduce stress in the person with
cancer
23-Find financial support*
6 months 1 year 2 year 5 year 3.5 years
- All unmet needs lead to a difference greater than 1.5 (1.82-3.98)
Summary final results 6 months 1 year 2 years 3.5 years 5 years
Core, stable unmet needs
14-Reduce stress in the person with
cancer
Anxiety
31-Manage concerns cancer coming
back
Anxiety Anxiety
39-Work through feelings about death Anxiety Anxiety
Prevalent, unmet needs
15-Look after your own health Anxiety
Depression
Depression
37-Get emotional support for self Anxiety
42-Make decisions in context of
uncertainty
Anxiety
Depression
Depression Depression
Not prevalent, but important 17 - Address fears about deterioration Anxiety Depression
21-Adapt changes person’s working
life
Anxiety
22- Impact of cancer on carer working
life
Anxiety
Depression
23-Find financial support Anxiety
Depression 40-Deal with lack of acknowledgment Depression
41-Cope with recovery not as
expected
Depression
All prevalent
unmet needs are
at some point
significantly
associated with
depression
and/or anxiety
Few core, stable
unmet needs, are
associated with
anxiety (none
with depression)
Less prevalent
unmet needs
were significant
at selected
waves
Main modules
- Reduce stress in the person with cancer
- Manage concerns cancer coming back
- Work through feelings about death
- Look after your own health
- Get emotional support for self
- Make decisions in context of uncertainty
Optional modules based on assessment
- Address fears about deterioration
- Adapt changes person’s working life
- Impact of cancer on carer working life
- Find financial support
- Deal with lack of acknowledgment
- Cope with recovery not as expected
Outcomes
Anxiety
Depression
Caregiver Intervention Implications
Thank You
Dr. Sylvie Lambert, PhD
Assistant Professor,
Ingram School of Nursing
514-797-3762
Room 400, Wilson Hall