1. 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

2. 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.

3. Methods Breast, lung, and prostate cancer. Phase 1: Qualitative methods – Semi-structured interviews Phase 2: Quantitative methods – Postal questionnaire survey

4. Methods Breast, 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).

5. 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…

6. Methods Breast, 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.

7. Quantitative Survey Methods 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.

8. Survey participants Cancer site % Employment status % breast67%paid employment37% lung3%self-employed12% prostate29%not in paid employment24% Respondentsretired/other24% patient93% proxy (family member)7%Other Age at diagnosisChildren/adults dependents43% <5025% 50-5930%Medical card at diagnosis36% 60-6926% 70+18%Social welfare/HSE payments24% Marital statusat diagnosis married/living as married72% living alone26%Health insurance at diagnosis63% Responders n=740 (54%)

9. 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

10. 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%

11. 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

12. 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

13. Health-Related Costs Breast Cancer Lymph Drainage 5% €140* Wigs & Hairpieces 40% €400* * Average (median) amount spent

14. Health-Related Costs Breast Cancer Lymph Drainage 5% €140* Wigs & Hairpieces 40% €400* * Average (median) amount spent 1 in 5 Paid >€500

15. Spending on household bills since cancer diagnosis Stayed the same 41% respondents Increased 59% respondents Increased Telephone bills 42% Increased Heating bills 44% Increased Food Bills 29%

16. Changes in average day-to-day spending because of cancer diagnosis Stayed the same 49% respondents Decreased a little 2% Decreased a lot 1% Increased a little 34% Increased a lot 13%

17. Changes in average day-to-day spending because of cancer diagnosis Stayed the same 49% respondents Decreased a little 2% Decreased a lot 1% Increased a little 34% Increased a lot 13% 47% respondents

18. Spending reduced or cut since cancer diagnosis Regular items (e.g. new clothes, take-away meals, etc.) 21% Holidays 20% Leisure activities 12%

19. Ability to pay mortgage or personal loans since cancer diagnosis Mortgage (n=206) 43% more difficult Loans (n=203) 40% more difficult

20. Need to use savings since cancer diagnosis Used all savings 6% Used some savings 49% Didn’t use savings 44%

21. Need to use savings since cancer diagnosis Used all savings 6% Used some savings 49% Didn’t use savings 44% 55% respondents

22. Need to use savings since cancer diagnosis Used all savings 6% Used some savings 49% Didn’t use savings 44% 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%)

23. Need to borrow since cancer diagnosis 11% Credit cards 2% Family/Friends 5% Bank/Credit Union 8%

24. Employment No. working at diagnosis = 364 (49%) Finances affected decision 16% Family members changed working pattern 16% Received sick pay from employer 49% Took time off work 85% Income decreased 58%

25. 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

26. 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

27. Household income since cancer diagnosis Stayed the same 59% Decreased 11% Increased 30%

28. Household income since cancer diagnosis Stayed the same 59% 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%)

29. Cancer diagnosis has made household’s ability to make ends meet…… More difficult 44% Less difficult 8% No more or less difficult 44% A little more difficult 25% More difficult 15% Much more difficult 8%

30. Cancer diagnosis has made household’s ability to make ends meet…… More difficult 44% Less difficult 8% No more or less difficult 44% 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 15% Much more difficult 8%

31. Feelings about household’s financial situation since cancer diagnosis…. No more or less concerned 37% Less concerned 31% More concerned 32%

32. Feelings about household’s financial situation since cancer diagnosis…. No more or less concerned 37% Less concerned 31% More concerned 32% Frequency didn’t vary by socio-economic variables A little more concerned 15% very concerned 5% Much more concerned 8%

33. Psychosocial impact Less difficult Household ability to make ends meet since cancer diagnosis No more or less difficult More difficult

34. Psychosocial impact Less difficult Household ability to make ends meet since cancer diagnosis No more or less difficult More difficult Depression 33% 24% 51%

35. 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%

36. Psychosocial impact Less concerned Feelings about household financial situation since cancer diagnosis No more or less concerned More concerned 39% 23% 52% 15% 7% 30% Depression Severe depression

37. Psychosocial impact Household ability to make ends meet since cancer diagnosis More difficult Anxious 44% Stressed 50% No more or less difficult Less difficult

38. Psychosocial impact Less concerned Feelings about household financial situation since cancer diagnosis No more or less concernedMore concerned Stressed 50% Anxious 44%

39. 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)

40. 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

41. 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 a.timmons@ncri.ie