the financial cost and consequences of having cancer in ireland collaborative project between the...
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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.
MethodsBreast, lung, and prostate cancer.
Phase 1: Qualitative methods – Semi-structured interviews
Phase 2: Quantitative methods – Postal questionnaire survey
MethodsBreast, lung, and prostate cancer.
Phase 1: Qualitative methods – Semi-structured interviews
Phase 2: Quantitative methods – Postal questionnaire survey
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 self-defined).
MethodsBreast, 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…
MethodsBreast, lung, and prostate cancer.
Phase 1: Qualitative methods – Semi-structured interviews
Phase 2: Quantitative methods – Postal questionnaire survey
Provides detailed informative data.
Valuable first step in the development of instruments to quantify the financial impact of cancer.
A quantitative survey instrument developed.
Piloted and administered to patients with cancer throughout Ireland.
Quantitative SurveyMethods
Postal Questionnaire
Socio-demographic information
Household spending
Health related costs
Work & Employment
Savings & Borrowing
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
Cancer site % Employment status %
breast 67% paid employment 37%
lung 3% self-employed 12%
prostate 29% not in paid employment 24%
Respondents retired/other 24%
patient 93%
proxy (family member) 7% Other
Age at diagnosis Children/adults dependents 43%
<50 25%
50-59 30% Medical card at diagnosis 36%
60-69 26%
70+ 18% Social welfare/HSE payments 24%
Marital status at diagnosis
married/living as married 72%
living alone 26% Health insurance at diagnosis 63%
Responders n=740 (54%)
Treatment-related costs
71% Travelling Expenses
Average (median) amount = €3601 in 4 paid > €788
52%Paid for Parking
Average (median) amount = €751 in 4 paid > €160
Health-Related Costs
Complementary
Therapies 15%
Other Therapies(e.g. occupational therapy)
2%
Visits to GP
36%Visits to Consultants
45%
Physiotherapy
9%Counselling
6%
Health-Related Costs
Complementary
Therapies 15%
Other Therapies(e.g. occupational therapy)
2% €400*
Visits to GP
36% €250*Visits to Consultants
45% €465*
Physiotherapy
9% €320*Counselling
6% €360* *Average (median) amount spent
Health-Related Costs
Complementary
Therapies 15%
Other Therapies(e.g. occupational therapy)
2% €400*
Visits to GP
36% €250*Visits to Consultants
45% €465*
Physiotherapy
9% €320*Counselling
6% €360*
Prescription
Medications 29%(not covered on medical card
or insurance)
Over-the-counter
Medications 39%
Dietary supplements
13%
*Average (median) amount spent
Health-Related CostsBreast Cancer
Lymph Drainage
5% €140*
Wigs & Hairpieces
40% €400**Average (median) amount spent
Health-Related CostsBreast Cancer
Lymph Drainage
5% €140*
Wigs & Hairpieces
40% €400**Average (median) amount spent
1 in 5 Paid >€500
Spending on household bills
since cancer diagnosis
Stayed the same41% respondents
Increased59% respondents
Increased Telephone bills42%
Increased Heating bills44%
Increased Food Bills29%
Changes in average day-to-day spending
because of cancer diagnosis
Stayed the same49% respondents
Decreased a little2%
Decreased a lot1%
Increased a little34%
Increased a lot13%
Changes in average day-to-day spending
because of cancer diagnosis
Stayed the same49% respondents
Decreased a little2%
Decreased a lot1%
Increased a little34%
Increased a lot13%
47% respondents
Spending reduced or cut since cancer diagnosis
Regular items(e.g. new clothes,
take-away meals, etc.)
21%Holidays
20%
Leisure activities12%
Ability to pay mortgage or personal loans
since cancer diagnosis
Mortgage (n=206)
43% more difficult
Loans (n=203)
40% more difficult
Need to use savings since cancer diagnosis
Used all savings6%
Used some savings49%
Didn’t use savings44%
Need to use savings since cancer diagnosis
Used all savings6%
Used some savings49%
Didn’t use savings44%
55% respondents
Need to use savings since cancer diagnosis
Used all savings6%
Used some savings49%
Didn’t use savings44%
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%)
EmploymentNo. working at diagnosis = 364 (49%)
Finances affected decision
16%
Family members changed working pattern
16%
Received sick pay
from employer 49%
Took time off work85%
Income decreased
58%
Medical cards & social welfare payments
Got medical card since diagnosis
61%
Claimed new social welfare payment since cancer diagnosis
24%
Experience of finding out about and applying for new social welfare/HSE payments:
Getting Application information process*
Very easy 30% 27%Quite easy 47% 52%Quite difficult 14% 14%Very difficult 9% 7%
* % of those who applied for new payments
Medical cards & social welfare payments
Got medical card since diagnosis
61%
Claimed new social welfare payment since cancer diagnosis
24%
Experience of finding out about and applying for new social welfare/HSE payments:
Getting Application information process*
Very easy 30% 27%Quite easy 47% 52%Quite difficult 14% 14%Very difficult 9% 7%
* % of those who applied for new payments
1 in 5
Household incomesince cancer diagnosis
Stayed the same59%
Decreased11%
Increased30%
Frequency higher among:
• woman (35%)• younger age (<50=54%; 50-59=39%)• working (paid employment=52%; self-employed=47%)• with dependents (43%)
Cancer diagnosis has made household’s ability
to make ends meet……
More difficult44%
Less difficult8%
No more or less difficult44%
A little more difficult25%
More difficult15%
Much more difficult8%
Cancer diagnosis has made household’s ability
to make ends meet……
More difficult44%
Less difficult8%
No more or less difficult44%
Frequency higher among:
• younger age (<50 = 69%; 50-59 = 58%)
• working at diagnosis (61%)• with dependents (60%)• lone parents (79%)
A little more difficult25%
More difficult15%
Much more difficult8%
Feelings about household’s financial situation
since cancer diagnosis….
No more or less concerned37%
Less concerned31%
More concerned32%
Feelings about household’s financial situation
since cancer diagnosis….
No more or less concerned37%
Less concerned31%
More concerned32%
Frequency didn’t vary by socio-economic variables
A little more concerned
15%
very concerned
5%
Much more concerned
8%
Psychosocial impact
Less difficult
Household ability to make ends meet since cancer diagnosis
No more or less difficult More difficult
Psychosocial impact
Less difficult
Household ability to make ends meet since cancer diagnosis
No more or less difficult More difficult
Depression
33% 24% 51%
Psychosocial impact
Less difficult
Household ability to make ends meet since cancer diagnosis
No more or less difficult More difficult
Depression
Severe depression
33% 24% 51%
8% 6% 27%
Psychosocial impact
Less concerned
Feelings about household financial situation since cancer diagnosis
No more or less concernedMore concerned
39% 23% 52%
15% 7% 30%
Depression
Severe depression
Psychosocial impact
Household ability to make ends meet since cancer diagnosis
More difficult
Anxious44%
Stressed50%
No more or less difficultLess difficult
Psychosocial impact
Less concerned
Feelings about household financial situation since cancer diagnosis
No more or less concerned More concerned
Stressed50%
Anxious44%
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
Health and social services
Patient support groups
Employers
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
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]