Download The financial cost and consequences of having cancer in Ireland

The financial cost and consequences of
having cancer in Ireland
Collaborative Project between the
Irish Cancer Society and the National Cancer Registry
Ireland
Funded by the Irish Cancer Society
Aileen Timmons, L Sharp, A-E Carsin, N Donnelly, J Kelly, J McCormack,
N Ni Chonghaile, C O’Callaghan, E O’Donnell, O Ryan, H Comber
Population-based cancer research in Ireland Meeting, Dublin, August 2009
Background
• Economics of cancer poorly understood even
internationally.
• Areas of cost and costs themselves – likely to be
somewhat specific to particular health and social
care system.
• No good “off-the-shelf” questionnaires or other
tools to assess costs available.
• Lack of evidence-based data for Ireland.
Methods
Breast, lung, and prostate cancer.
Phase 1: Qualitative methods
– Semi-structured interviews
Phase 2: Quantitative methods –
Postal questionnaire survey
Methods
Breast, lung, and prostate cancer.
Phase 1: Qualitative methods
– Semi-structured interviews
1. In-depth interviews with key
informants:
Hospital-based oncology social workers.
2. In-depth interviews with patients
(who had additional costs / financial
difficulties as a result of their cancer
diagnosis - “financial difficulties” was selfdefined).
Phase 2: Quantitative methods –
Postal questionnaire survey
Methods
Breast, lung, and prostate cancer.
Phase 1: Qualitative methods
– Semi-structured interviews
Phase 2: Quantitative methods –
Postal questionnaire survey
Large-scale quantitative survey of
patients throughout Ireland.
Aim to quantify the financial burden:
How many affected?
Who worst affected?
How much additional spending?
Etc…
Methods
Breast, lung, and prostate cancer.
Phase 1: Qualitative methods
– Semi-structured interviews
Provides detailed informative data.
Valuable first step in the
development of instruments to
quantify the financial impact of
cancer.
Phase 2: Quantitative methods –
Postal questionnaire survey
A quantitative survey instrument
developed.
Piloted and administered to patients
with cancer throughout Ireland.
Quantitative Survey
Methods
Socio-demographic
information
Savings & Borrowing
Household
spending
•
•
•
•
•
•
Work & Employment
Postal
Questionnaire
Health related costs
Overall financial
situation
Patients with breast, lung or prostate cancer.
Identified from NCRI database.
Within 6 months and 2 years of diagnosis.
17 hospitals across country (Incl. 3 private hospitals).
After exclusions, n=1373.
Survey done June-Sept 2008.
Survey participants
Responders n=740 (54%)
Cancer site
%
Employment status
%
breast
67%
paid employment
37%
lung
3%
self-employed
12%
prostate
29%
not in paid employment
24%
retired/other
24%
Respondents
patient
93%
proxy (family member)
7%
Age at diagnosis
<50
25%
50-59
30%
60-69
26%
70+
18%
Marital status
Other
Children/adults dependents
43%
Medical card at diagnosis
36%
Social welfare/HSE payments
24%
at diagnosis
married/living as married
72%
living alone
26%
Health insurance at diagnosis
63%
Treatment-related
costs
71%
Travelling Expenses
Average (median) amount = €360
1 in 4 paid > €788
52%
Paid for Parking
Average (median) amount = €75
1 in 4 paid > €160
Visits to GP
36%
Health-Related
Costs
Visits to Consultants
45%
Complementary
Physiotherapy
Therapies 15%
Other Therapies
9%
(e.g. occupational therapy)
Counselling
2%
6%
Visits to GP
36% €250*
Health-Related
Costs
Visits to Consultants
45% €465*
Complementary
Physiotherapy
Therapies 15%
Other Therapies
9% €320*
(e.g. occupational therapy)
Counselling
2% €400*
6% €360*
*Average (median)
amount spent
Over-the-counter
Prescription
Medications 39%
Dietary supplements
Medications 29%
13%
(not covered on medical card
or insurance)
Visits to GP
36% €250*
Health-Related
Costs
Visits to Consultants
45% €465*
Complementary
Physiotherapy
Therapies 15%
Other Therapies
9% €320*
(e.g. occupational therapy)
Counselling
2% €400*
6% €360*
*Average (median)
amount spent
Lymph Drainage
5% €140*
Health-Related Costs
Breast Cancer
Wigs & Hairpieces
40% €400*
*Average (median)
amount spent
Lymph Drainage
5% €140*
Health-Related Costs
Breast Cancer
1 in 5 Paid >€500
Wigs & Hairpieces
40% €400*
*Average (median)
amount spent
Stayed the same
41% respondents
Spending on
household bills
since cancer diagnosis
Increased
59% respondents
Increased Food Bills
29%
Increased Telephone bills
42%
Increased Heating bills
44%
Stayed the same
49% respondents
Decreased a little
2%
Increased a little
34%
Changes in average
day-to-day spending
because of cancer diagnosis
Decreased a lot
1%
Increased a lot
13%
Stayed the same
49% respondents
Decreased a little
2%
Increased a little
34%
Changes in average
day-to-day spending
because of cancer diagnosis
Decreased a lot
1%
47% respondents
Increased a lot
13%
Spending reduced or cut
since cancer diagnosis
Regular items
(e.g. new clothes,
take-away meals, etc.)
21%
Leisure activities
12%
Holidays
20%
Mortgage (n=206)
43% more difficult
Ability to pay
mortgage or personal loans
since cancer diagnosis
Loans (n=203)
40% more difficult
Didn’t use savings
44%
Need to use savings
since cancer diagnosis
Used some savings
Used all savings
49%
6%
Didn’t use savings
44%
Need to use savings
since cancer diagnosis
Used some savings
Used all savings
49%
6%
55% respondents
Didn’t use savings
44%
Need to use savings
since cancer diagnosis
Used some savings
Used all savings
49%
6%
55% respondents
Frequency higher among:
•
•
•
•
•
younger age (<50=78%; 50-59=61%)
working (paid employment=67%; self-employed=62%)
no health insurance (69%)
with dependents (63%)
lone parents (92%)
Need to borrow
since cancer diagnosis
11%
Bank/Credit Union
Credit cards
8%
2%
Family/Friends
5%
Employment
No. working at diagnosis = 364
(49%)
Took time off work
85%
Finances affected decision
Received sick pay
from employer 49%
16%
Family members changed
working pattern
16%
Income
decreased
58%
Medical cards &
social welfare payments
Claimed new
social welfare payment
since cancer diagnosis
Got medical card
since diagnosis
61%
24%
Experience of finding out about and applying for new
social welfare/HSE payments:
Very easy
Quite easy
Quite difficult
Very difficult
Getting
information
Application
process*
30%
47%
14%
9%
27%
52%
14%
7%
* % of those who applied for new payments
Medical cards &
social welfare payments
Claimed new
social welfare payment
since cancer diagnosis
Got medical card
since diagnosis
61%
24%
Experience of finding out about and applying for new
social welfare/HSE payments:
Very easy
Quite easy
Quite difficult
Very difficult
Getting
information
Application
process*
30%
47%
14%
9%
27%
52%
14%
7%
1 in 5
* % of those who applied for new payments
Stayed the same
59%
Household income
since cancer diagnosis
Decreased
11%
Increased
30%
Stayed the same
59%
Household income
since cancer diagnosis
Decreased
11%
Increased
30%
Frequency higher among:
•
•
•
•
woman (35%)
younger age (<50=54%; 50-59=39%)
working (paid employment=52%; self-employed=47%)
with dependents (43%)
No more or less difficult
44%
Cancer diagnosis has made
household’s ability
to make ends meet……
Less difficult
8%
A little more difficult
25%
More difficult
44%
More difficult
15%
Much more difficult
8%
No more or less difficult
44%
Cancer diagnosis has made
household’s ability
to make ends meet……
Less difficult
8%
Frequency higher among:
• younger age (<50 = 69%;
50-59 = 58%)
• working at diagnosis (61%)
• with dependents (60%)
• lone parents (79%)
A little more difficult
25%
More difficult
44%
More difficult
15%
Much more difficult
8%
No more or less concerned
37%
Feelings about household’s
financial situation
since cancer diagnosis….
Less concerned
31%
More concerned
32%
No more or less concerned
37%
Feelings about household’s
financial situation
since cancer diagnosis….
Less concerned
31%
A little more
concerned
More concerned
32%
15%
Much more
concerned
Frequency didn’t vary by
socio-economic variables
very
concerned
5%
8%
Psychosocial impact
Household ability to make ends meet
since cancer diagnosis
Less difficult
No more or less difficult
More difficult
Psychosocial impact
Household ability to make ends meet
since cancer diagnosis
Less difficult
33%
No more or less difficult
24%
Depression
More difficult
51%
Psychosocial impact
Household ability to make ends meet
since cancer diagnosis
Less difficult
No more or less difficult
More difficult
Depression
33%
24%
8%
6%
51%
27%
Severe depression
Psychosocial impact
Feelings about household financial situation
since cancer diagnosis
Less concerned
No more or less concerned
More concerned
Depression
39%
23%
15%
7%
52%
30%
Severe depression
Psychosocial impact
Household ability to make ends meet
since cancer diagnosis
Less difficult
No more or less difficult
More difficult
Stressed
50%
Anxious
44%
Psychosocial impact
Feelings about household financial situation
since cancer diagnosis
Less concerned
No more or less concerned
More concerned
Stressed
50%
Anxious
44%
Conclusions
• Cancer can have a significant adverse financial impact for patients
and their families in Ireland
• Most patients/families incur some additional costs; for some
patients/families, these are substantial
• Exacerbated by lost income and limited sick-pay
• Some groups of patients appear particularly vulnerable (e.g.
younger age, working, dependents)
• Wide-ranging consequences - including using savings, borrowing
money, reduced spending on “extras” and increased concerns,
and adverse psychosocial effects (depression, stress, anxiety)
Implications
Target Areas
Treatment-related travel costs
Other health-related costs
Household expenses
Accessing social welfare/HSE
payments and medical cards
Sick-pay entitlement
Burden on the family
Health and social
services
Patient support groups
Employers
Thank you to:
• The Irish Cancer Society for funding this work.
• Those who were interviewed and completed questionnaires:
•Oncology Social Workers.
•Patients.
•Family Members.
• Health professionals who helped to recruit patients:
•Oncology Social Workers.
•Clinical Nurse Specialists/Oncology Nurses.
•Consultants.
•Cancer Support Groups.
• Colleagues at NCRI:
L Sharp, H Comber, A-E Carsin (statistical analysis), C O’Callaghan
(administration), F Dwane and T Kelleher (data extraction from NCRI
database), F Drummond and J Murphy (double coding of interview
transcripts), and other colleagues at the National Cancer Registry
who helped with IT and administration.
• Steering Committee:
L Sharp, N Donnelly, J Kelly, J McCormack, N Ni Chonghaile,
E O’Donnell, O Ryan, H Comber
• For further information contact: [email protected]