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A qualitative analysis and development of a conceptual model assessing financial toxicity in cancer patients accessing the universal healthcare system



This paper illustrates a conceptual model for a new patient-reported outcome measure (PROM) aimed at measuring financial toxicity (FT) in oncological setting in Italy, where citizens are provided universal healthcare coverage.


Focus groups with overall 34 patients/caregivers in three different Italian centers (from Northern, Centre, and Southern Italy) and an open-ended survey with 97 medical oncologists were undertaken. Transcripts from focus groups and the open-ended survey were analyzed to identify themes and links between themes. Themes from the qualitative research were supplemented with those reported in the literature; concepts identified formed the basis for item development that were then tested through the importance analysis (with 45 patients) and the cognitive debriefing (with other 45 patients) to test relevance and comprehension of the first draft PRO instrument.


Ten domains were extracted by analyzing 156 concepts generated from focus groups and the open-ended survey. After controlling for redundancy, 55 items were generated and tested through the importance analysis. After controlling comprehension and feasibility through cognitive debriefing interviews, a first version of the questionnaire consisting of 30 items was devised.


This qualitative study represents the first part of a study conducted to develop a new PROM to assess FT in Italy, by using a bottom-up approach that makes the most of patients’ experiences and the health system analysis.

Trial registration NCT03473379 first posted on March 22, 2018.

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Fig. 1

Data availability

Data are available on request to the corresponding author.


  1. Altice CK, Banegas MP, Tucker-Seeley RD, Yabroff KR (2017) Financial hardships experienced by cancer survivors: a systematic review. JNCI: J Natl Cancer Inst 109(2):djw205

  2. Braveman P, Egerter S, Williams DR (2011) The social determinants of health: coming of age. Annu Rev Public Health 32:381–398

    Article  Google Scholar 

  3. Carrera PM, Kantarjian HM, Blinder VS (2018) The financial burden and distress of patients with cancer: understanding and stepping-up action on the financial toxicity of cancer treatment. CA Cancer J Clin 68:153–165

    Article  Google Scholar 

  4. de Souza JA, Yap BJ, Hlubocky FJ, Wroblewski K, Ratain MJ, Cella D, Daugherty CK (2014) The development of a financial toxicity patient-reported outcome in cancer: the COST measure. Cancer 120:3245–3253

    Article  Google Scholar 

  5. Desai A, Gyawali B (2020) Financial toxicity of cancer treatment: moving the discussion from acknowledgement of the problem to identifying solutions. EClinicalMedicine 20:100269

    Article  Google Scholar 

  6. FAVO (Federazione Italiana delle Associazioni di Volontariato in Oncologia) (2012) 4° Rapporto sulla condizione assistenziale dei malati oncologici.

  7. FAVO CENSIS (2011) Ad alta voce - I tumori in Italia: i bisogni e le aspettative dei pazienti e delle famiglie.

  8. Goldstein DA (2017) Financial toxicity in cancer care-edging toward solutions. Cancer 123:1301–1302

    Article  Google Scholar 

  9. Gordon LG, Merollini KMD, Lowe A, Chan RJ (2017) A systematic review of financial toxicity among cancer survivors: we can’t pay the co-pay. Patient 10:295–309

    Article  Google Scholar 

  10. Lasch KE, Marquis P, Vigneux M, Abetz L, Arnould B, Bayliss M, Crawford B, Rosa K (2010) PRO development: rigorous qualitative research as the crucial foundation. Qual Life Res 19:1087–1096

    Article  Google Scholar 

  11. Marmot M (2005) Social determinants of health inequalities. Lancet 365:1099–1104

    Article  Google Scholar 

  12. Marmot M, Friel S, Bell R, Houweling TA, Taylor S, Commission on social determinants of H (2008) Closing the gap in a generation: health equity through action on the social determinants of health. Lancet 372:1661–1669

    Article  Google Scholar 

  13. Mitchell T, Thompson L (1994) A theory of temporal adjustment of the evaluation of events: rosy prospection & rosy retrospection. In: Stubbart C, Porac J, Meindl J (eds) . JAI Press, Advances in managerial cognition and organizational information-processing, pp 85–114

    Google Scholar 

  14. Nederhof AJ (1985) Methods of coping with social desirability bias: a review. European Journal of Social Psychology 15:263–280

    Article  Google Scholar 

  15. O'Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA (2014) Standards for reporting qualitative research: a synthesis of recommendations. Acad Med 89:1245–1251

    Article  Google Scholar 

  16. O'Connor JM, Kircher SM, de Souza JA (2016) Financial toxicity in cancer care. J Community Support Oncol 14:101–106

    Article  Google Scholar 

  17. Onwuegbuzie AJ, Leech N, Collins KMT (2010) Innovative data collection strategies in qualitative research. Qualitative report 15:696–726

    Google Scholar 

  18. Patrick DL, Burke LB, Gwaltney CJ, Leidy NK, Martin ML, Molsen E, Ring L (2011) Content validity--establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1--eliciting concepts for a new PRO instrument. Value Health 14:967–977

    Article  Google Scholar 

  19. Patrick DL, Burke LB, Gwaltney CJ, Leidy NK, Martin ML, Molsen E, Ring L (2011) Content validity--establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force report: part 2--assessing respondent understanding. Value Health

  20. Perrone F, Di Maio M, Efficace F, Gallo C, Giannarelli D, Montesarchio V, Riva S (2019) Assessing financial toxicity in patients with cancer: moving away from a one-size-fits-all approach. J Oncol Pract JOP1900200

  21. Perrone F, Jommi C, Di Maio M, Gimigliano A, Gridelli C, Pignata S, Ciardiello F, Nuzzo F, de Matteis A, Del Mastro L, Bryce J, Daniele G, Morabito A, Piccirillo MC, Rocco G, Guizzaro L, Gallo C (2016) The association of financial difficulties with clinical outcomes in cancer patients: secondary analysis of 16 academic prospective clinical trials conducted in Italy. Annals of oncology 27:2224–2229

    CAS  Article  Google Scholar 

  22. Richardson JTE (1999) The concepts and methods of phenomenographic research. Review of educational research 69:53–82

    Article  Google Scholar 

  23. Riva S, Bryce J, De Lorenzo F, Del Campo L, Di Maio M, Efficace F, Frontini L, Giannarelli D, Gitto L, Iannelli E, Jommi C, Montesarchio V, Traclo F, Vaccaro CM, Gallo C, Perrone F (2019) Development and validation of a patient-reported outcome tool to assess cancer-related financial toxicity in Italy: a protocol. BMJ Open 9:e031485

    Article  Google Scholar 

  24. Rotter J, Spencer JC, Wheeler SB (2019) Financial toxicity in advanced and metastatic cancer: overburdened and underprepared. J Oncol Pract JOP1800518

  25. Russell BH (2013) Social research methods - qualitative and quantitative approaches. SAGE Publications, Thousand Oakx, California

    Google Scholar 

  26. Seale C (1999) Quality in qualitative research 5:465–478

    Google Scholar 

  27. Sharp L, Carsin AE, Timmons A (2013) Associations between cancer-related financial stress and strain and psychological well-being among individuals living with cancer. Psychooncology 22:745–755

    Article  Google Scholar 

  28. Starks H, Trinidad SB (2007) Choose your method: a comparison of phenomenology, discourse analysis, and grounded theory. Qual Health Res 17:1372–1380

  29. Stover AM, Haverman L, van Oers HA, Greenhalgh J, Potter CM, Group IPPiCPISW (2020) Using an implementation science approach to implement and evaluate patient-reported outcome measures (PROM) initiatives in routine care settings. Qual Life Res

  30. Strauss A, Corbin J (1998) Basics of qualitative research: techniques and procedures for developing grounded theory. Sage, Thousand Oaks

    Google Scholar 

  31. Tesch R (1990) Qualitative research: analysis types and software. Routledge

  32. Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 19:349–357

    Article  Google Scholar 

  33. Zafar SY, Peppercorn JM, Schrag D, Taylor DH, Goetzinger AM, Zhong X, Abernethy AP (2013) The financial toxicity of cancer treatment: a pilot study assessing out-of-pocket expenses and the insured cancer patient's experience. Oncologist 18:381–390

    Article  Google Scholar 

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The authors thank Daniela Barberio, Ermelinda Quarata, Florencia Gonzalez Leone, Francesca Laudato, Maria Rosaria Esposito, Manuela Florio, Simona Bevilacqua, Marilena Martino, Chiara Palazzo, M. Teresa Ribecco, Giovanni De Matteis (Napoli), Gaetano Lacidogna, Elisa Sperti, Francesca Vignani, Donatella Marino, Sabrina Terzolo, Luisa Fusco, Annalisa Bellezza, Laura Polimeno (Torino) and Filomena Spasiano, Luana Fotia, and Barbara Matrascia (Roma).


The project is supported by the Fondazione AIRC (Associazione Italiana per la RicercasulCancro), a non-profit Italian charity, IG 2017 Id 20402.

Author information

Authors and Affiliations



FP obtained funding. SR, JB, CG, and FP planned qualitative and statistical analysis and drafted the protocol. SR led all the focus groups and performed qualitative analyses. AG did literature search and review. JB, MDM, DG, VM, AS, LS, and FP allowed patients’ data collection. All authors participated in writing and approved the study protocol. SR, FE, MDM, CG, and FP drafted the manuscript. All authors contributed to the manuscript and approved the final version.

Corresponding author

Correspondence to Francesco Perrone.

Ethics declarations

Conflict of interest

SR has received personal fees from CSL-Behring and GlaxoSmithKline Foundation. MDM has received personal fees from Bristol Myers Squibb, Merck Sharp & Dohme, AstraZeneca, Janssen, Astellas, Pfizer, Eisai, and Takeda. FE has received personal fees from Amgen, Bristol Myers Squibb, Incyte, Orsenix, and Takeda. CJ has received personal fees from Amgen, Astra Zeneca, Biogen, Boehringer Ingelheim, Celgene, Gilead, GSK, Ipsen, Janssen-Cilag, Takeda, and Sanofi. VM has received personal fees from Bristol Myers Squibb and Italfarmaco; a member of his family is an employee in Bayer. CMV has received personal fees from Baxter, MSD, Novartis, Sanofi, and Sanofi Genzyme. MCP reports personal fees from Daichii Sankyo, personal fees from GSK, personal fees from MSD, grants from Roche, grants and personal fees from AstraZeneca, and non-financial support from Bayer, outside the submitted work. FP has received personal fees from Bayer, Ipsen, Astra Zeneca, Bristol Myers Squibb, Sandoz, Incyte, Celgene, Pierre Fabre, and Janssen-Cilag. The other authors have no conflict to disclose.

Ethics approval (include appropriate approvals or waivers)

The protocol has been approved on October 10, 2017, by the Ethical Committee of the coordinating Institution and subsequently by the Ethical Committees of all participating Institutions.

Consent to participate (include appropriate statements)

All caregivers and patients received detailed information on the study activities, signed the consent form, and authorized the use of their data according to European Directive n. 679/2016 and the Italian law (DL 196/2003) on the protection of personal data.

Consent for publication (include appropriate statements)

No consent was sought for publication because no personal information that can be associated with a single patient is being published.

Code availability (software application or custom code)

Not applicable.

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English language papers identified through literature search

  1. 1.

    Alexander GC, Casalino LP, Meltzer DO: Patient-physician communication about out-of-pocket costs. JAMA 290:953–958, 2003

  2. 2.

    Altice CK. et al. Financial Hardships Experienced by Cancer Survivors: A Systematic Review

  3. 3.

    Archuleta KL, Britt SL, Tonn TJ, et al.: Financial satisfaction and financial stressors in marital satisfaction. Psychol Rep 108:563–576, 2011

  4. 4.

    Arozullah AM, Calhoun EA, Wolf M, et al. The financial burden of cancer: Estimates from a study of insured women with breast cancer. J Support Oncol. 2004;2(3):271–278.

  5. 5.

    Azzani M, Roslani AC, Su TT. The perceived cancer-related financial hardship among patients and their families: a systematic review. Support Care Cancer. 2015;23(3):889–898. doi:

  6. 6.

    Banthin JS, Bernard DM. Changes in financial burdens for health care: national estimates for the population younger than 65 years, 1996 to 2003. JAMA. 2006;296(22):2712–2719.

  7. 7.

    Bernard DS, Farr SL, Fang Z. National estimates of out-of-pocket health care expenditure burdens among nonelderly adults with cancer: 2001 to 2008. J Clin Oncol. 2011;29(20):2821–2826.

  8. 8.

    Bestvina CM, Zullig LL, Rushing C, et al. Patient-oncologist cost communication, financial distress, and medication adherence. J Oncol Pract. 2014;10(3): 162–167.

  9. 9.

    Bona K et al. (2013) Economic impact of advanced pediatric cancer on families. J Pain Symptom Manag 47(3):594–603

  10. 10.

    Cagle JG, Carr DC, Hong S, et al. Financial burden among US households affected by cancer at the end of life. Psychooncology. 2016;25(8):919–926.

  11. 11.

    Carrera PM, Olver I. The financial hazard of personalized medicine and supportive care. Support Care Cancer. 2015;23(12):3399–3401. doi:

  12. 12.

    Chang S, Long SR, Kutikova L, et al. 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. 2004;22(17):3524–3530.

  13. 13.

    Chino F, Peppercorn J, Taylor DH Jr., et al. Self-reported financial burden and satisfaction with care among patients with cancer. Oncologist. 2014;19(4): 414–420.

  14. 14.

    Chirikos TN, Russell-Jacobs A, Cantor AB. Indirect economic effects of long term breast cancer survival. Cancer Pract. 2002;10(5):248–255.

  15. 15.

    Davidoff AJ, Erten M, Shaffer T, et al. Out-of-pocket health care expenditure burden for Medicare beneficiaries with cancer. Cancer. 2013;119(6): 1257–1265.

  16. 16.

    Delgado-Guay et al._Financial Distress and Its Associations With Physical and Emotional Symptoms and Quality of Life Among Advanced Cancer Patients_2015 The Oncologist

  17. 17.

    Dowling EC, Chawla N, Forsythe LP, et al. Lost productivity and burden of illness in cancer survivors with and without other chronic conditions. Cancer. 2013; 119(18):3393–3401.

  18. 18.

    Dussel V, Bona K. Heath JA, et al.: Unmeasured costs of a child’s death: Perceived financial burden, work disruptions, and economic coping strategies used by American and Australian families who lost children to cancer. J Clin Oncol 29:1007–1013, 2011

  19. 19.

    Ekwueme DU, Yabroff KR, Guy GP Jr., et al. Medical costs and productivity losses of cancer survivors–United States, 2008–2011. MMWR Morb Mortal Wkly Rep. 2014;63(23):505–510.

  20. 20.

    Ell K, Xie B, Wells A, et al. Economic stress among low-income women with cancer: Effects on quality of life. Cancer. 2008;112(3):616–625.

  21. 21.

    Fenn KM, Evans SB, McCorkle R, et al. Impact of financial burden of cancer on survivors’ quality of life. J Oncol Pract. 2014;10(5):332–338.

  22. 22.

    Finkelstein EA, Tangka FK, Trogdon JG, et al. The personal financial burden of cancer for the working-aged population. Am J Manag Care. 2009;15(11): 801–806.

  23. 23.

    Gupta D, Lis CG, Grutsch JF (2007) Perceived cancer-related financial difficulty: implications for patient satisfaction with quality of life in advanced cancer. Support Care Cancer 15:1051–1056

  24. 24.

    Guy GP Jr, Ekwueme DU, Yabroff KR, et al. Economic burden of cancer survivorship among adults in the United States. J Clin Oncol. 2013;31(30):3749–3757.

  25. 25.

    Guy GP, Robin Yabroff K, Ekwueme DU, et al. Estimating the health and economic burden of cancer among those diagnosed as adolescents and young adults. Health Affairs. 2014;33(6):1024–1031.

  26. 26.

    Heath JA et al. (2006) Childhood cancer: its impact and financial costs for Australian families. Pediatr Hematol Oncol 23(5):439–448

  27. 27.

    Himmelstein DU, Thorne D, Warren E, et al.: Medical bankruptcy in the United States, 2007: Results of a national study. Am J Med 122:741–746, 2009

  28. 28.

    Huntington SF, Weiss BM, Vogl DT, et al. Financial toxicity in insured patients with multiple myeloma: A cross-sectional pilot study. Lancet Haematol. 2015; 2(10):e408–e416.

  29. 29.

    Irwin B, Kimmick G, Altomare I, et al. Patient experience and attitudes toward addressing the cost of breast cancer care. Oncologist. 2014;19(11):1135–1140.

  30. 30.

    Jacobson JJ, Epstein JB, Eichmiller FC, et al. The cost burden of oral, oral pharyngeal, and salivary gland cancers in three groups: Commercial insurance, Medicare, and Medicaid. Head Neck Oncol. 2012; 4:15.

  31. 31.

    Jagsi R, Pottow JA, Griffith KA, et al. Long-term financial burden of breast cancer: experiences of a diverse cohort of survivors identified through population-based registries. J Clin Oncol. 2014; 32(12):1269–1276.

  32. 32.

    Jayadevappa R, Schwartz JS, Chhatre S, et al. The burden of out-of-pocket and indirect costs of prostate cancer. Prostate. 2010;70(11):1255–1264.

  33. 33.

    Joo S-h, Grable J: An exploratory framework of the determinants of financial satisfaction. J Fam Econ Issues 25:25–50, 2004

  34. 34.

    Kent EE, Forsythe LP, Yabroff KR, et al. Are survivors who report cancer related financial problems more likely to forgo or delay medical care? Cancer. 2013;119(20):3710–3717.

  35. 35.

    Khera N. Reporting and grading financial toxicity. J Clin Oncol. 2014;32(29):3337–3338. doi:

  36. 36.

    Kilgore ML, Goldman DP. Drug costs and out-of-pocket spending in cancer clinical trials. Contemp Clin Trials. 2008;29(1):1–8.

  37. 37.

    Kodama Y et al. (2012) Increased financial burden among patients with chronic myelogenous leukaemia receiving imatinib in Japan: a retrospective survey. BMC Cancer 12:152

  38. 38.

    Langa KM, Fendrick AM, Chernew ME, et al. Out-of-pocket health-care expenditures among older Americans with cancer. Value Health. 2004;7(2):186–194.

  39. 39.

    Lathan CS, Cronin A, Tucker-Seeley R, Zafar SY, Ayanian JZ, Schrag D. Association of Financial Strain With Symptom Burden and Quality of Life for Patients With Lung or Colorectal Cancer. J Clin Oncol. 2016;34(15):1732–1740. doi:

  40. 40.

    Li C, Li C, Forsythe L, et al. Mental health services utilization and expenditures associated with cancer survivorship in the United States. J Cancer Surviv. 2015;9(1):50–58.

  41. 41.

    Longo CJ et al. (2006) Financial and family burden associated with cancer treatment in Ontario. Can Support Care Cancer 14:1077–1085

  42. 42.

    Markman M, Luce R (2010) Impact of the cost of cancer treatment: an internet-based survey. Am Soc Clin Oncol 6(2):69–73

  43. 43.

    Meisenberg BR, Varner A, Ellis E, et al. Patient attitudes regarding the cost of illness in cancer care. Oncologist. 2015;20(10):1199–1204.

  44. 44.

    Meneses K, Azuero A, Hassey L, et al. Does economic burden influence quality of life in breast cancer survivors? Gynecol Oncol. 2012;124(3):437–443.

  45. 45.

    Moore K. Out-of-pocket expenditures of outpatients receiving chemotherapy. Oncol Nurs Forum. 1998;25(9):1615–1622.

  46. 46.

    Narang AK, Nicholas LH. Out-of-Pocket Spending and Financial Burden Among Medicare Beneficiaries With Cancer. JAMA Oncol. 2017;3(6):757–765. doi:

  47. 47.

    Palattiyil G, Chakrabarti M: Coping strategies of families in HIV/AIDS care: some exploratory data from two developmental contexts. AIDS Care 20:881–885, 2008

  48. 48.

    Parikh RR, Grossbard ML, Green BL, Harrison LB, Yahalom J. Disparities in survival by insurance status in patients with Hodgkin lymphoma. Cancer. 2015;121(19):3515–3524. doi:

  49. 49.

    Pezzin LE, O’Niel MB, Nattinger AB (2009) The economic consequences of breast cancer adjuvant hormonal treatments. J Gen Intern Med 24(2):446–450

  50. 50.

    Pisu M, Azuero A, Meneses K, et al. Out of pocket cost comparison between Caucasian and minority breast cancer survivors in the Breast Cancer Education Intervention (BCEI). Breast Cancer Res Treat. 2011;127(2):521–529.

  51. 51.

    Pisu M, Kenzik KM, Oster RA, et al. Economic hardship of minority and nonminority cancer survivors 1 year after diagnosis: Another long-term effect of cancer? Cancer. 2015;121(8):1257–1264.

  52. 52.

    Prawitz AD, Garman, ET, Sorhaindo, B, et al.: InCharge Financial Distress/Financial Well-Being Scale: Development, administration, and score interpretation. Financial Counseling and Planning 17:34–50, 2006

  53. 53.

    Ramsey SD, Blough D, Kirchhoff A, et al.: Washington State cancer patients found to be at greater risk for bankruptcy than people without a cancer diagnosis. Health Aff 32:1143–52, 2013

  54. 54.

    Ramsey SD, Bansal A, Fedorenko CR, et al. Financial Insolvency as a Risk Factor for Early Mortality Among Patients With Cancer. J Clin Oncol. 2016;34(9):980–986. doi:

  55. 55.

    Regenbogen SE, Veenstra CM, Hawley ST, et al. The personal financial burden of complications after colorectal cancer surgery. Cancer. 2014;120(19):3074–3081.

  56. 56.

    Rogers SN et al. (2012) Patients’ perception of the financial impact of head and neck cancer and the relationship to health related quality of life. Br J Oral Maxillofac Surg 50:410–416

  57. 57.

    Round J, Jones L, Morris S. Estimating the cost of caring for people with cancer at the end of life: A modelling study. Palliat Med. 2015;29(10):899–907. doi:

  58. 58.

    Nipp RD, Powell E, Chabner B, Moy B. Recognizing the Financial Burden of Cancer Patients in Clinical Trials. Oncologist. 2015;20(6):572–575. doi:

  59. 59.

    Sasser AC, Rousculp MD, Birnbaum HG, et al. Economic burden of osteoporosis, breast cancer, and cardiovascular disease among postmenopausal women in an employed population. Womens Health Issues. 2005;15(3):97–108.

  60. 60.

    Shankaran V et al. (2012) Risk factors for financial hardship in patients receiving adjuvant chemotherapy for colon cancer: a population-based exploratory analysis. J Clin Oncol 30(14):1608–1614

  61. 61.

    Strahan N, Gandy M, Thompson FE, et al.; Practice and attitudes of primary care physicians in a rural southern state concerning HIV/AIDS patients. J Health Social Policy 4:65–78, 1993

  62. 62.

    Teitelbaum A, Ba-Mancini A, Huang H, et al. Health care costs and resource utilization, including patient burden, associated with novel-agent-based treatment versus other therapies for multiple myeloma: Findings using realworld claims data. Oncologist. 2013;18(1):37–45.

  63. 63.

    Timmons A, Gooberman-Hill R, Sharp L. “It’s at a time in your life when you are most vulnerable”: a qualitative exploration of the financial impact of a cancer diagnosis and implications for financial protection in health. PLoS One. 2013;8(11):e77549. Published 2013 Nov 11. doi:

  64. 64.

    Veenstra CM, Regenbogen SE, Hawley ST, et al. A composite measure of personal financial burden among patients with stage III colorectal cancer. Med Care. 2014;52(11):957–962.

  65. 65.

    Wan Y, Gao X, Mehta S, et al. Indirect costs associated with metastatic breast cancer. J Med Econ. 2013;16(10):1169–1178.

  66. 66.

    Yabroff KR, Dowling EC, Guy GP Jr., et al. Financial Hardship Associated With Cancer in the United States: Findings From a Population-Based Sample of Adult Cancer Survivors. J Clin Oncol. 2016;34(3):259–267. doi:

  67. 67.

    Yabroff KR, Davis WW, Lamont EB, et al. Patient time costs associated with cancer care. J Natl Cancer Inst. 2007;99(1):14–23.

  68. 68.

    Yabroff KR, Lawrence WF, Clauser S, et al. Burden of illness in cancer survivors: Findings from a population-based national sample. J Natl Cancer Inst. 2004;96(17):1322–1330.

  69. 69.

    Yabroff KR, Warren JL, Knopf K, et al. Estimating patient time costs associated with colorectal cancer care. Med Care. 2005;43(7):640–648.

  70. 70.

    Zafar SY, Ubel PA, Tulsky JA, Pollak KI. Cost-related health literacy: a key component of high-quality cancer care. J Oncol Pract. 2015;11(3):171–173. doi:

  71. 71.

    Zafar SY, McNeil RB, Thomas CM, et al. Population-based assessment of cancer survivors’ financial burden and quality of life: A prospective cohort study. J Oncol Pract. 2015;11(2):145–150.

  72. 72.

    Zafar SY, Peppercorn JM, Schrag D, et al. The financial toxicity of cancer treatment: A pilot study assessing out-of-pocket expenses and the insured cancer patient’s experience. Oncologist 2013;18(4):381–390.

  73. 73.

    Zafar SY, Goetzinger AM, Fowler R et al.: Impact of out-of-pocket expenses on cancer care. ASCO Meeting Abstracts 29:6006

  74. 74.

    Zafar SY. Financial Toxicity of Cancer Care: It’s Time to Intervene. J Natl Cancer Inst. 2015; 108(5):djv370. Published 2015 Dec 11. doi:

  75. 75.

    Zaidi AA, Ansari TZ, Khan A (2012) The financial burden of cancer: estimates from patients undergoing cancer care in a tertiary care hospital. Int J Equity Health 11:60

  76. 76.

    Zheng Z, Yabroff KR, Guy GP Jr., et al. Annual Medical Expenditure and Productivity Loss Among Colorectal, Female Breast, and Prostate Cancer Survivors in the United States. J Natl Cancer Inst. 2015;108(5):djv382. Published 2015 Dec 24. doi:

  77. 77.

    Zullig LL, Peppercorn JM, Schrag D, et al. Financial distress, use of cost-coping strategies, and adherence to prescription medication among patients with cancer. J Oncol Pract. 2013;9(6 SUPPL.):60s–63s.

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Table 4 List of the 55 items ordered by importance score

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Riva, S., Efficace, F., Di Maio, M. et al. A qualitative analysis and development of a conceptual model assessing financial toxicity in cancer patients accessing the universal healthcare system. Support Care Cancer 29, 3219–3233 (2021).

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  • Financial toxicity
  • Qualitative research
  • Conceptual model
  • Patient experience
  • Cancer