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%)

Need to borrow since cancer diagnosis

11%

Credit cards2%

Family/Friends5%

Bank/Credit Union8%

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%

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: a.timmons@ncri.ie