Supportive Care in Cancer

, Volume 21, Issue 1, pp 107–117 | Cite as

The multidimensional nature of the financial and economic burden of a cancer diagnosis on patients and their families: qualitative findings from a country with a mixed public–private healthcare system

  • Aileen Timmons
  • Rachael Gooberman-Hill
  • Linda Sharp
Original Article

Abstract

Purpose

Although awareness is increasing that cancer can have an adverse financial and economic impact for patients, the overall burden remains poorly understood. To elucidate these issues, we used qualitative methods to explore the financial impact of a cancer diagnosis in Ireland, which has a mixed public–private healthcare system and where sick leave and sick pay are at employers’ discretion.

Methods

Face-to-face semi-structured interviews were conducted with hospital-based oncology social workers (OSWs; 21 OSWs from 11 hospitals) and patients (20 from eight hospitals; 11 breast, 5 prostate and 4 lung cancer). Participants were asked about the (1) extra expenses incurred, (2) cancer’s impact on work and income, and (3) accessing financial assistance/social welfare benefits. The two interview sets were analysed separately using thematic analysis.

Results

Broad themes that emerged included the wide range of additional cancer-related medical and non-medical expenses incurred by all patients, including those with medical cards (which entitle the bearer to receive health services free of charge) and those with private health insurance; the major impact of cancer and its treatment on work and patient/household income (all patients who were working at diagnosis experienced a drop in income); and difficulties in accessing medical cards and benefits.

Conclusions

This study reveals the complex, multidimensional nature of the financial and economic burden cancer imposes on patients and the whole family unit. Changes in income post-cancer exacerbate the effects of cancer-related out-of-pocket expenses. These findings have implications for healthcare professionals, service providers and policy makers.

Keywords

Breast cancer Prostate cancer Lung cancer Finances Costs Qualitative 

References

  1. 1.
    Arozullah AM, Calhoun EA, Wolf M, Finley DK, Fitzner KA, Heckinger EA et al (2004) The financial burden of cancer: estimates from a study of insured women with breast cancer. J Support Oncol 2:271–278PubMedGoogle Scholar
  2. 2.
    Allirajah D, Herbst K, Morgan L (2005) Free at the point of delivery? Exposing the hidden cost of hospital travel and parking for cancer patients. A Macmillan Cancer Relief report in association with Dr Foster Ltd. Macmillan Cancer ReliefGoogle Scholar
  3. 3.
    Brooks J, Wilson KA, Amir Z (2011) Additional financial costs borne by cancer patients: a narrative review. Eur J Oncol Nurs 15(4):302–310PubMedCrossRefGoogle Scholar
  4. 4.
    Moore KA (1999) Breast cancer patients' out-of-pocket expenses. Cancer Nurs 22:389–396PubMedCrossRefGoogle Scholar
  5. 5.
    Langa KM, Fendrick AM, Chernew ME, Kabeto MU, Paisley KL, Hayman JA (2004) Out-of-pocket health-care expenditures among older Americans with cancer. Value Health 7:186–194PubMedCrossRefGoogle Scholar
  6. 6.
    Lauzier S, Maunsell E, De Koninck M, Drolet M, Hébert-Croteau N, Robert J (2005) Conceptualization and sources of costs from breast cancer: findings from patient and caregiver focus groups. Psycho-Oncology 14:351–360PubMedCrossRefGoogle Scholar
  7. 7.
    Longo CJ, Deber R, Fitch M, Williams AP, D'Souza D (2007) An examination of cancer patients' monthly 'out-of-pocket' costs in Ontaria, Canada. Eur J Cancer Care 16:500–507CrossRefGoogle Scholar
  8. 8.
    Gordon L, Scuffham P, Hayes S, Newman B (2007) Exploring the economic impact of breast cancers during the 18 months following diagnosis. Psycho-Oncology 16:1130–1139PubMedCrossRefGoogle Scholar
  9. 9.
    Syse A, Tretli S, Kravdal Ø (2008) Cancer's impact on employment and earnings—a population-based study from Norway. J Cancer Surviv 2:149–158PubMedCrossRefGoogle Scholar
  10. 10.
    Bradley S, Sherwood PR, Donovan HS, Hamilton R, Rosenzweig M, Hricik A et al (2007) I could lose everything: understanding the cost of a brain tumor. J Neurooncol 85:329–338PubMedCrossRefGoogle Scholar
  11. 11.
    Yabroff KR, Warren JL, Knopf K, Davis WW, Brown ML (2005) Estimating patient time costs associated with colorectal cancer care. Med Care 43:640–648PubMedCrossRefGoogle Scholar
  12. 12.
    Finkelstein EA, Tangka FK, Trogdon JG, Sabatino SA, Richardson LC (2009) The personal financial burden of cancer for the working-aged population. Am J Manag Care 15:801–806PubMedGoogle Scholar
  13. 13.
    Chang S, Long SR, Kutikova L, Bowman L, Finley D, Crown WH et al (2004) Estimating the cost of cancer: results on the basis of claims data analyses for cancer patients diagnosed with seven types of cancer during 1999 to 2000. J Clin Oncol 22:3524–3530PubMedCrossRefGoogle Scholar
  14. 14.
    Bradley CJ, Neumark D, Luo Z, Schenk M (2007) Employment and cancer: findings from a longitudinal study of breast and prostate cancer survivors. Cancer Invest 25:47–54PubMedCrossRefGoogle Scholar
  15. 15.
    Lauzier S, Maunsell E, Drolet M, Coyle D, Hebert-Croteau N (2010) Validity of information obtained from a method for estimating cancer costs from the perspective of patients and caregivers. Qual Life Res 19:177–189PubMedCrossRefGoogle Scholar
  16. 16.
    Miedema B, Easley J, Fortin P, Hamilton R, Mathews M (2008) The economic impact on families when a child is diagnosed with cancer. Curr Oncol 15:173–178PubMedCrossRefGoogle Scholar
  17. 17.
    Health Service Executive (2008) Annual Report and Financial Statements, 2007. Kildare: HSE. http://www.hse.ie/eng/Publications/corporate/HSE_Annual_Report_and_Financial_Statements_2007.pdf. Accessed 27 June 2012
  18. 18.
    Sharp L, Timmons A (2010) The financial impact of a cancer diagnosis. Ireland, National Cancer Registry Ireland. http://www.ncri.ie/pubs/pubfiles/Financial%20impact%20of%20a%20cancer%20diagnosis.pdf. Accessed 27 June 2012
  19. 19.
    World Health Organization Europe (2006) Highlights on health in Ireland 2004. http://www.euro.who.int/__data/assets/pdf_file/0014/103217/E88528.pdf. Accessed 27 June 2012
  20. 20.
    Sharp L, Timmons A (2011) Social welfare and legal constraints associated with work among breast and prostate cancer survivors: experiences from Ireland. J Cancer Surviv Eur J Oncol Nurs 15(4):302–310Google Scholar
  21. 21.
    Sharp L, Carsin AE, Timmons A (2012) Associations between cancer-related financial stress and strain and psychological well-being among individuals living with cancer. Psychooncology. doi:10.1002/pon.3055
  22. 22.
    Strauss A, Corbin J (1990) Basics of qualitative research: grounded theory procedures and techniques. Sage, Newbury ParkGoogle Scholar
  23. 23.
    Pope C, Ziebland S, Mays N (2000) Qualitative research in health care. Analysing qualitative data. BMJ 320:114–116PubMedCrossRefGoogle Scholar
  24. 24.
    Malterud K (2001) Qualitative research: standards, challenges, and guidelines. Lancet 358:483–488PubMedCrossRefGoogle Scholar
  25. 25.
    Murh T (1997) ATLAS.ti for Windows. Scientific Software Development, BerlinGoogle Scholar
  26. 26.
    Mathews M, West R, Buehler S (2009) How important are out-of-pocket costs to rural patients' cancer care decisions? Can J Rural Med 14:54–60PubMedGoogle Scholar
  27. 27.
    Weaver KE, Rowland JH, Alfano CM, McNeel TS (2010) Parental cancer and the family: a population-based estimate of the number of US cancer survivors residing with their minor children. Cancer 116:4395–4401PubMedCrossRefGoogle Scholar
  28. 28.
    Longo CJ, Fitch M, Deber RB, Williams AP (2006) Financial and family burden associated with cancer treatment in Ontario, Canada. Support Care Cancer 14:1077–1085PubMedCrossRefGoogle Scholar
  29. 29.
    Baldwin LM, Cai Y, Larson EH, Dobie SA, Wright GE, Goodman DC et al (2008) Access to cancer services for rural colorectal cancer patients. J Rural Health 24:390–399PubMedCrossRefGoogle Scholar
  30. 30.
    Maddams J, Brewster D, Gavin A, Steward J, Elliott J, Utley M et al (2009) Cancer prevalence in the United Kingdom: estimates for 2008. Br J Cancer 101:541–547PubMedCrossRefGoogle Scholar
  31. 31.
    Drolet M, Maunsell E, Brisson J, Brisson C, Masse B, Deschenes L (2005) Not working 3 years after breast cancer: predictors in a population-based study. J Clin Oncol 23:8305–8312PubMedCrossRefGoogle Scholar
  32. 32.
    Amir Z, Neary D, Luker K (2008) Cancer survivors' views of work 3 years post diagnosis: a UK perspective. Eur J Oncol Nurs 12:190–197PubMedCrossRefGoogle Scholar
  33. 33.
    Lauzier S, Maunsell E, Drolet M, Coyle D, Hebert-Croteau N, Brisson J et al (2008) Wage losses in the year after breast cancer: extent and determinants among Canadian women. J Natl Cans Inst 100:332Google Scholar
  34. 34.
    Bouknight RR, Bradley CJ, Luo Z (2006) Correlates of return to work for breast cancer survivors. J Clin Oncol 24:345–353PubMedCrossRefGoogle Scholar
  35. 35.
    Amir Z, Moran T, Walsh L, Iddenden R, Luker K (2007) Return to paid work after cancer: a British experience. J Cancer Surviv 1:129–136PubMedCrossRefGoogle Scholar
  36. 36.
    Taskila T, Lindbohm ML (2007) Factors affecting cancer survivors' employment and work ability. Acta Oncol 46:446–451PubMedCrossRefGoogle Scholar
  37. 37.
    Yarker J, Munir F, Bains M, Kalawsky K, Haslam C (2010) The role of communication and support in return to work following cancer-related absence. Psycho-Oncology 19:1078–1085PubMedCrossRefGoogle Scholar
  38. 38.
    Nachreiner NM, Dagher RK, McGovern PM, Baker BA, Alexander BH, Gerberich SG (2007) Successful return to work for cancer survivors. AAOHN J 55:290–295PubMedGoogle Scholar
  39. 39.
    Grunfeld E, Coyle D, Whelan T, Clinch J, Reyno L, Earle CC et al (2004) Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ 170:1795–1801PubMedCrossRefGoogle Scholar
  40. 40.
    Kennedy F, Haslam C, Munir F, Pryce J (2007) Returning to work following cancer: a qualitative exploratory study into the experience of returning to work following cancer. Eur J Cancer Care 16:17–25CrossRefGoogle Scholar
  41. 41.
    Mathews M, Park AD (2009) Identifying patients in financial need: cancer care providers' perceptions of barriers. Clin J Oncol Nurs 13:501–505PubMedCrossRefGoogle Scholar
  42. 42.
    Wilson K, Amir Z (2008) Cancer and disability benefits: a synthesis of qualitative findings on advice and support. Psychooncology 17:421–429PubMedCrossRefGoogle Scholar
  43. 43.
    Chapple A, Ziebland S, McPherson A, Summerton N (2004) Lung cancer patients' perceptions of access to financial benefits: a qualitative study. Br J Gen Pract 54:589–594PubMedGoogle Scholar
  44. 44.
    Macmillan Cancer Relief (2005) Access denied. Benefits advisers' perceptions of the problem cancer patients face when claiming disability living allowance and attendance allowance.http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Campaigns/access_denied_executive_report.pdf. Accessed 28 June 2012
  45. 45.
    Macmillan Cancer Relief (2004) The unclaimed millions. http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Campaigns/the_unclaimed_millions.pdf. Accessed 28 June 2012

Copyright information

© Springer-Verlag 2012

Authors and Affiliations

  • Aileen Timmons
    • 1
  • Rachael Gooberman-Hill
    • 2
  • Linda Sharp
    • 1
  1. 1.National Cancer RegistryCorkIreland
  2. 2.School of Clinical SciencesUniversity of BristolBristolUK

Personalised recommendations