The long shadow of childhood cancer: a qualitative study on insurance hardship among survivors of childhood cancer

Manya Jerina Hendriks, Erika Harju, Katharina Roser, Marcello Ienca, Gisela Michel, Manya Jerina Hendriks, Erika Harju, Katharina Roser, Marcello Ienca, Gisela Michel

Abstract

Background: The long-term consequences of childhood cancer have received increasing attention due to the growing number of survivors over the past decades. However, insurance hardships of survivors are mostly unknown. This study explored qualitatively, in a sample of childhood cancer survivors (CCS), (i) the experiences and needs of CCS living in Switzerland with a special focus on hardships related to insurance; and (ii) the views of insurance and law experts with experience on childhood cancer.

Methods: Semi-structured interviews were conducted with 28 childhood cancer survivors and 3 experts (one legal expert, two insurance experts). Data was analysed using qualitative content analysis.

Results: Three key themes emerged from the interviews with the CCS: 1) experiences with insurance, 2) perception of discrimination, and 3) needs and barriers for support. The interviewed experts provided further detailed clarification of CCS' concerns. Our findings indicated that some CCS can move past their cancer history, while others continue to face hardships. CCS reported confusion about the opportunities and services within the social security system and most relied on their personal contacts for guidance. Finally, CCS expressed a strong need for socio-economic and legal support for social insurance questions, especially related to disability insurance.

Conclusions: With the growing population of CCS, it is essential to further assess the interplay between medical and psychosocial health and socio-economic hardship. Supportive psychosocial services should aim to ameliorate insurance hardships. Better understanding of the relationship between childhood cancer and insurance hardships during survivorship will inform efforts to improve long-term financial security and health outcomes for survivors. We call for the public, lawmakers, researchers, insurers, and patient organizations to come together and discuss future perspectives to avoid the risk of discrimination for cancer survivors.

Keywords: Childhood cancer; Discrimination; Insurance hardship; Long-term late effects; Qualitative research; Survivorship; Switzerland; Universal health coverage; Unmet needs.

Conflict of interest statement

The authors declare that they have no conflict of interest.

References

    1. Schindler M, Belle FN, Grotzer MA, von der Weid NX, Kuehni CE, Swiss Paediatric Oncology G Childhood cancer survival in Switzerland (1976–2013): time-trends and predictors. Int J Cancer. 2017;140:1. doi: 10.1002/ijc.30434.
    1. Oeffinger KC, Argenbright KE, Levitt GA, McCabe MS, Anderson PR, Berry E, Maher J, Merrill J, Wollins DS. Models of cancer survivorship health care: moving forward. Am Soc Clin Oncol Educ Book. 2014;4:205–213. doi: 10.14694/EdBook_AM.2014.34.205.
    1. Michel G, Rebholz CE, von der Weid NX, Bergstraesser E, Kuehni CE. Psychological distress in adult survivors of childhood cancer: the Swiss Childhood Cancer Survivor study. J Clin Oncol. 2010;28:10:1740–1748.
    1. Font-Gonzalez A, Feijen EL, Sieswerda E, van Dulmen-den Broeder E, Grootenhuis M, Maurice-Stam H, Caron H, Essink-Bot ML, van der Pal H, Geskus R, et al. Social outcomes in adult survivors of childhood cancer compared to the general population: linkage of a cohort with population registers. Psychooncology. 2016;25:8. doi: 10.1002/pon.4040.
    1. Hudson MM, Ness KK, Gurney JG, Mulrooney DA, Chemaitilly W, Krull KR, Green DM, Armstrong GT, Nottage KA, Jones KE, et al. Clinical ascertainment of health outcomes among adults treated for childhood cancer. J Amer Med Assoc. 2013;309:22. doi: 10.1001/jama.2013.6296.
    1. Perez GK, Kirchhoff AC, Recklitis C, Krull KR, Kuhlthau KA, Nathan PC, Rabin J, Armstrong GT, Leisenring W, Robison LL. Mental health insurance access and utilization among childhood cancer survivors: a report from the childhood cancer survivor study. J Cancer Surviv. 2018;12:528–36.
    1. Nathan PC, Henderson TO, Kirchhoff AC, Park ER, Yabroff KR. Financial hardship and the economic effect of childhood cancer survivorship. J Clin Oncol. 2018;36:21. doi: 10.1200/JCO.2017.76.4431.
    1. Pelletier W, Bona K. Assessment of financial burden as a standard of care in pediatric oncology. Pediatr Blood Cancer. 2015;62:S. doi: 10.1002/pbc.25375.
    1. Mols F, Thong MS, Vissers P, Nijsten T, van de Poll-Franse LV. Socio-economic implications of cancer survivorship: results from the PROFILES registry. Eur J Cancer. 2012;48(13):2037–42.
    1. Mader L, Michel G, Roser K. Unemployment following childhood cancer. Dtsch Arztebl Int. 2017;114:47.
    1. Mader L, Roser K, Baenziger J, Tinner EM, Scheinemann K, Kuehni CE, Michel G, for the Swiss Paediatric Oncology G. Household income and risk-of-poverty of parents of long-term childhood cancer survivors. Pediatr Blood Cancer. 2017;64(8):e26456.
    1. Mader L, Rueegg CS, Vetsch J, Rischewski J, Ansari M, Kuehni CE, Michel G, Swiss Paediatric Oncology G. Employment situation of parents of long-term childhood cancer survivors. PLoS One. 2016;11(3):e0151966.
    1. Park ER, Kirchhoff AC, Nipp RD, Donelan K, Leisenring WM, Armstrong GT, Kuhlthau KA. Assessing health insurance coverage characteristics and impact on health care cost, worry, and access: a report from the childhood cancer survivor study. JAMA Intern Med. 2017;177:12. doi: 10.1001/jamainternmed.2017.5047.
    1. Nipp RD, Kirchhoff AC, Fair D, Rabin J, Hyland KA, Kuhlthau K, Perez GK, Robison LL, Armstrong GT, Nathan PC et al. Financial burden in survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol. 2017;35(30):3474–81.
    1. Dumas A, Allodji R, Fresneau B, Valteau-Couanet D, El-Fayech C, Pacquement H, Laprie A, Nguyen TD, Bondiau PY, Diallo I, et al. The right to be forgotten: a change in access to insurance and loans after childhood cancer? J Cancer Surviv. 2017;11:4. doi: 10.1007/s11764-017-0600-9.
    1. Young Cancer Europe. White paper on the needs of young people living with cancer. 2018.
    1. Tamminga SJ, Bultmann U, Husson O, Kuijpens JL, Frings-Dresen MH, de Boer AG. Employment and insurance outcomes and factors associated with employment among long-term thyroid cancer survivors: a population-based study from the PROFILES registry. Qual Life Res. 2016;25:4:997–1005.
    1. Ghaderi S, Engeland A, Moster D, Ruud E, Syse A, Wesenberg F, Bjorge T. Increased uptake of social security benefits among long-term survivors of cancer in childhood, adolescence and young adulthood: a Norwegian population-based cohort study. Br J Cancer. 2013;108:1525–1533. doi: 10.1038/bjc.2013.107.
    1. Kaul S, Avila JC, Mutambudzi M, Russell H, Kirchhoff AC, Schwartz CL. Mental distress and health care use among survivors of adolescent and young adult cancer: a cross-sectional analysis of the National Health Interview Survey. Cancer. 2017;123:5.
    1. Santacroce SJ, Kneipp SM. Influence of pediatric cancer-related financial burden on parent distress and other stress-related symptoms. Pediatr Blood Cancer. 2020;67:3:e28093.
    1. Liu L, Amp, Apos, Donnell P, Sullivan R, Katalinic A, Moser L, de Boer A, Meunier F. Cancer in Europe: death sentence or life sentence? Eur J Cancer. 2016;65:150–155. doi: 10.1016/j.ejca.2016.07.007.
    1. Maurice-Stam H, Verhoof EJ, Caron HN, Grootenhuis MA. Are survivors of childhood cancer with an unfavourable psychosocial developmental trajectory more likely to apply for disability benefits? Psycho-oncology. 2013;22(3):708–14.
    1. Santacroce SJ, Kneipp SM. A conceptual model of financial toxicity in pediatric oncology. J Pediatr Oncol Nurs. 2019;36(1):6–16.
    1. Faruqui N, Bernays S, Martiniuk A, Abimbola S, Arora R, Lowe J, Denburg A, Joshi R. Access to care for childhood cancers in India: perspectives of health care providers and the implications for universal health coverage. BMC Public Health. 2020;20:1:1641.
    1. Welch JJG, Kenney LB, Hirway P, Usmani GN, Kadan-Lottick N, Grewal SS, Huang M, Bradeen H, Ader J, Diller L, et al. Understanding predictors of continued long-term pediatric cancer care across the region: a report from the Consortium for New England Childhood Cancer Survivors. Pediatr Blood Cancer. 2017;64(10):e26564. doi: 10.1002/pbc.26564.
    1. Kirchhoff AC, Nipp R, Warner EL, et al. “job lock” among long-term survivors of childhood cancer: a report from the childhood cancer survivor study. JAMA Oncol. 2018;4(5):707–11.
    1. Schindler M, Danis M, Goold SD, Hurst SA. Solidarity and cost management: Swiss citizens’ reasons for priorities regarding health insurance coverage. Health Expect. 2018;21(5):858–69.
    1. Hurst SA, Schindler M, Goold SD, Danis M. Swiss-CHAT: citizens discuss priorities for Swiss health insurance coverage. Int J Health Policy Manage. 2018;7(8):746–54.
    1. Peytremann-Bridevaux I, Burnand B, Cassis I, Nolte E. Switzerland. In: Nolte E, Knai C (eds). Assessing chronic disease management in European Health Systems: country reports. Copenhagen: European Observatory on Health Systems and Policies; 2015.
    1. Hagen T. Evaluation of a placement coaching program for recipients of disability insurance benefits in Switzerland. J Occup Rehabil. 2019;29(1):72–90.
    1. Hoffmann H, Richter D. Supported employment in Switzerland—Are we on track? Psychiatr Rehabil J. 2020;43(1):72–5.
    1. Piecek M, Tabin J-P, Perrin C, Probst I. The ‘compliant’, the ‘pacified’and the ‘rebel’: experiences with Swiss disability insurance. Disabil Soc. 2019;34(4):583–606.
    1. Boltshauser M, Zuber I, Hartmann P, Schilliger D, Mengis A, Wuethrich K. Was steht meinem Kind zu? Ein sozialversicherungsrechtlicher Ratgeber fuer Eltern von Kindern mit Behinderung. 5. Olten: Procap Schweiz; 2015.
    1. Federal Social Insurance Office. Overview of Swiss social security. 2019.
    1. Hendriks MJ, Belle FN, Tomášiková Z, Kuehni C, Michel G, von der Weid N. Follow-up care in childhood cancer survivors: improving services in Switzerland. Krebsbulletin. 2019;03:1–7.
    1. Tinner EM, Gumy-Pause F, Diezi M, Bergstraesser E, Hengartner H, Eisenreich B, Brazzola P, VdW NX, Tomášiková Z, Scheinemann K. Long-term follow-up after childhood cancer in Switzerland: a position statement from the pediatric Swiss LTFU working group. Krebsbulletin. 2019;3:212–215.
    1. Meier JH, Ansari M, Beck Popovic M, Bergstraesser E, Brazzola P, Eisenreich B, Janz I, Hengartner H, Tinner EM, von der Weid NX, et al. Aftercare in pediatric oncology in Switzerland – current state, challenges and future directions. Schweizer Krebsbull. 2018;38:3.
    1. Hendriks MJ, Harju E, Michel G. The unmet needs of childhood cancer survivors in long-term follow-up care: a qualitative study. Psychooncology. 2021;30(4):485–92.
    1. Bryman A. Social Research Methods. Oxford: Oxford University Press; 2012.
    1. Kuckartz U. Qualitative inhaltsanalyse. Methoden, Praxis, Computerunterstützung. Beltz Juventa; 2016.
    1. Kuckartz U. Mixed methods: methodologie, Forschungsdesigns und Analyseverfahren. Wiesbaden: Springer Fachmedien; 2014.
    1. Kuckartz U. Qualitative text analysis: a guide to methods, practice and using software. London: Sage; 2014.
    1. Saffer J, Nolte L, Duffy S. Living on a knife edge: the responses of people with physical health conditions to changes in disability benefits. Disabil Soc. 2018;33(10):1555–78.
    1. de Wolfe P. Reaping the benefits of sickness? Long-term illness and the experience of welfare claims. Disabil Soc. 2012;27(5):617–30.
    1. Thommen C. Meldestelle zu IV-Gutachten: Vom Psychiater als Hexe beschimpft. SRF 2020.
    1. Whittle HJ, Palar K, Ranadive NA, Turan JM, Kushel M, Weiser SD. “The land of the sick and the land of the healthy”: disability, bureaucracy, and stigma among people living with poverty and chronic illness in the United States. Soc Sci Med. 2017;190:181–189. doi: 10.1016/j.socscimed.2017.08.031.
    1. Kirchhoff AC, Parsons HM, Kuhlthau KA, Leisenring W, Donelan K, Warner EL, Armstrong GT, Robison LL, Oeffinger KC, Park ER. Supplemental security income and social security disability insurance coverage among long-term childhood cancer survivors. J Natl Cancer I. 2015;107(6):djv057. doi: 10.1093/jnci/djv057.
    1. Maurice-Stam H, Verhoof EJ, Caron HN, Grootenhuis MA. Are survivors of childhood cancer with an unfavourable psychosocial developmental trajectory more likely to apply for disability benefits? Psychooncology. 2013;22(3):708–14.
    1. Jones BL, Parker-Raley J, Barczyk A. Adolescent cancer survivors: identity paradox and the need to belong. Qual Health Res. 2011;21(8):1033–40.
    1. Kinderkrebs Schweiz. Eltern eines Survivors sein: Wochenende für Eltern. 2020. . Accessed 9 Sept 2020.
    1. Kinderkrebs Schweiz. Das Sozialversicherungssystem kann ein richtiger Dschungel sein: interview mit Franziska Lüthy von Procap. 2020. . Accessed 21 May 2021.
    1. Thouvenin F. Privatversicherungen: Datenschutzrecht als Grenze der Individualisierung? In: Edited by (Hrsg.) ES. Datenschutz und Gesundheitsrecht / Protection des données et droit de la santé. Zürich/Basel/Genf; 2019: p. 15–42.
    1. Gfrörer K, Müller R. Keine Zusatzversicherung für behinderte Kinder. SRF. 2019. . Accessed 24 Sept 2020.
    1. Insieme. Diskriminierung bei Zusatzversicherung. 2019. . Accessed 21 May 2021.
    1. Locher R. Der Zugang zur Justiz in Diskriminierungsfällen Teilstudie 1: Grundsätze des Diskriminierungsschutzes. Bern: Schweizerisches Kompetenzzentrum für Menschenrechte (SKMR); 2015.
    1. Mamguem Kamga A, Dumas A, Joly F, Simon J, Billa O, Poillot ML, Jolimoy G, Roignot P, Coutant C, Arveux P, et al. Socio-economic and occupational outcomes of long-term survivors of gynaecological cancer: a French population-based study. Eur J Cancer Care. 2020;29(4):e13235. doi: 10.1111/ecc.13235.
    1. Dumas A, De Vathaire F, Vassal G. Access to loan-related insurance for French cancer survivors. Lancet Oncol. 2016;17(10):1354–6.
    1. Financial Conduct Authority. Call for input on access to insurance. Feedback statement FS 18/1. London, United Kingdom; 2018.
    1. Scocca G, Meunier F. A right to be forgotten for cancer survivors: a legal development expected to reflect the medical progress in the fight against cancer. J Cancer Policy. 2020;25:100246. doi: 10.1016/j.jcpo.2020.100246.
    1. Mesnil M. What do we mean by the right to be forgotten? An analysis of the French case study from a lawyer’s perspective. J Cancer policy. 2018;15:122–127. doi: 10.1016/j.jcpo.2018.01.001.
    1. European Parliament and Council of European Union. General data protection regulation (GDPR) In: Regulation (EU) 2016/679. 2016.
    1. European Commission. Europe’s beating cancer plan. 2020. . Accessed 20 Nov 2020.
    1. European Cancer Coalition. Factsheet on the right to be forgotten in the EU National Legislations: legal background and current status from France, Belgium, Luxembourg and the Netherlands. 2020. . Accessed 24 Sept 2020.
    1. Harrington SE. US health-care reform: the patient protection and affordable care act. J Risk Insur. 2010;77(3):703–8.
    1. Gianinazzi ME, Rueegg CS, Zimmerman K, Kuehni CE, Michel G, Swiss Paediatric Oncology G. Intra-rater and inter-rater reliability of a medical record abstraction study on transition of care after childhood cancer. PLoS One. 2015;10(5):e0124290. doi: 10.1371/journal.pone.0124290.
    1. Smith B. Generalizability in qualitative research: misunderstandings, opportunities and recommendations for the sport and exercise sciences. Qual Res Sport Exerc Health. 2018;10(1):137–49.
    1. Zheng Z, Yabroff KR. The long shadow of childhood cancer: lasting risk of medical financial hardship. J Natl Cancer Inst. 2018;111(2):105–6.
    1. Huang IC, Bhakta N, Brinkman TM, Klosky JL, Krull KR, Srivastava D, Hudson MM, Robison LL. Determinants and consequences of financial hardship among adult survivors of childhood cancer: a report from the St. Jude Lifetime Cohort Study. J Natl Cancer Inst. 2019;111(2):189–200.
    1. Lagergren P, Schandl A, Aaronson NK, Adami HO, de Lorenzo F, Denis L, Faithfull S, Liu L, Meunier F, Ulrich C, et al. Cancer survivorship: an integral part of Europe’s research agenda. Mol Oncol. 2019;13(3):624–35.

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