Physicians’ experience with follow-up care of childhood cancer survivors – challenges and needs
Regular follow-up care is essential for childhood cancer survivors, but we know little about physicians’ experience with it. We aimed to describe: (1) involvement of Swiss physicians in follow-up care; (2) content of follow-up care provided; (3) problems encountered; and (4) additional resources needed.
MATERIALS AND METHODS: Within this cross-sectional survey we sent adapted questionnaires via professional associations to a sample of medical oncologists (MOs), paediatric oncologists (POs), general practitioners (GPs) and paediatricians (P) in Switzerland. Only oncologists involved in follow-up care were asked to report problems. GPs and Ps not involved in follow-up could indicate why. All physicians were asked about the content of follow-up care provided and additional resources needed.
A total of 183 physicians responded (27 MO, 13 PO, 122 GP, 21 P). Involved in follow-up were 81% of MOs, 85% of POs, 39% of GPs and 81% of Ps. Follow-up content differed between oncologists (MO and PO) and generalists (GP and P), with generalists examining or informing less in regard to the former cancer. POs reported more problems than MOs: many POs reported problems with transition of survivors to adult care (91%), and because of financial resources (73%) and time restraints (73%). MOs reported most problems during transition (23%). Not being aware of a survivor was the most common reason for GPs and Ps not participating in follow-up (74%). All groups reported a need for standardised protocols (85–91%) and specialised training (55–73%). GPs (94%) and Ps (100%) additionally desired more support from oncologists.
To improve quality and efficiency of follow-up care a national follow-up care model including standardised protocols and guidelines needs to be developed.
- www.cancer.gov 2016 [cited 2016; Available from: www.cancer.gov]
- Gatta G, Botta L, Rossi S, Aareleid T, Bielska-Lasota M, Clavel J, et al.; EUROCARE Working Group. Childhood cancer survival in Europe 1999-2007: results of EUROCARE-5--a population-based study. Lancet Oncol. 2014;15(1):35–47. https://doi.org/10.1016/S1470-2045(13)70548-5
- Ward E, DeSantis C, Robbins A, Kohler B, Jemal A. Childhood and adolescent cancer statistics, 2014. CA Cancer J Clin. 2014;64(2):83–103. https://doi.org/10.3322/caac.21219
- Pfeiffer V, Redomond S, Kouonen R, Sommer G, Spycher B, Schindler M, et al. Swiss Childhood Cancer Registry. Annual Report 2014-2015. Bern: University of Bern Institute of Social and Preventive Medicine; 2016.
- Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, et al.; Childhood Cancer Survivor Study. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355(15):1572–82. https://doi.org/10.1056/NEJMsa060185
- Alvarez JA, Scully RE, Miller TL, Armstrong FD, Constine LS, Friedman DL, et al. Long-term effects of treatments for childhood cancers. Curr Opin Pediatr. 2007;19(1):23–31. https://doi.org/10.1097/MOP.0b013e328013c89e
- Hudson MM, Ness KK, Gurney JG, Mulrooney DA, Chemaitilly W, Krull KR, et al. Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA. 2013;309(22):2371–81. https://doi.org/10.1001/jama.2013.6296
- Landier W, Bhatia S, Eshelman DA, Forte KJ, Sweeney T, Hester AL, et al. Development of risk-based guidelines for pediatric cancer survivors: the Children’s Oncology Group Long-Term Follow-Up Guidelines from the Children’s Oncology Group Late Effects Committee and Nursing Discipline. J Clin Oncol. 2004;22(24):4979–90. https://doi.org/10.1200/JCO.2004.11.032
- Children’s Oncology Group. Long-Tem Follow-Up Program Resource Guide. Wendy Landler, editor 2008.
- Wallace WHB, Blacklay A, Eiser C, Davies H, Hawkins M, Levitt GA, et al.; Late Effects Committee of the United Kingdom Children’s Cancer Study Group (UKCCSG). Developing strategies for long term follow up of survivors of childhood cancer. BMJ. 2001;323(7307):271–4. https://doi.org/10.1136/bmj.323.7307.271
- Wallace WHB, Thompson L, Anderson RA ; Guideline Development Group. Long term follow-up of survivors of childhood cancer: summary of updated SIGN guidance. BMJ. 2013;346:f1190. https://doi.org/10.1136/bmj.f1190
- Kremer LCM, Mulder RL, Oeffinger KC, Bhatia S, Landier W, Levitt G, et al.; International Late Effects of Childhood Cancer Guideline Harmonization Group. A worldwide collaboration to harmonize guidelines for the long-term follow-up of childhood and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group. Pediatr Blood Cancer. 2013;60(4):543–9. https://doi.org/10.1002/pbc.24445
- Steele JR, Wall M, Salkowski N, Mitby P, Kawashima T, Yeazel MW, et al. Predictors of risk-based medical follow-up: a report from the Childhood Cancer Survivor Study. J Cancer Surviv. 2013;7(3):379–91. https://doi.org/10.1007/s11764-013-0280-z
- Rebholz CE, von der Weid NX, Michel G, Niggli FK, Kuehni CE ; Swiss Pediatric Oncology Group (SPOG). Follow-up care amongst long-term childhood cancer survivors: a report from the Swiss Childhood Cancer Survivor Study. Eur J Cancer. 2011;47(2):221–9. https://doi.org/10.1016/j.ejca.2010.09.017
- Skinner R, Wallace WHB, Levitt G. Long-term follow-up of children treated for cancer: why is it necessary, by whom, where and how? Arch Dis Child. 2007;92(3):257–60. https://doi.org/10.1136/adc.2006.095513
- Essig S, Skinner R, von der Weid NX, Kuehni CE, Michel G. Follow-up programs for childhood cancer survivors in Europe: a questionnaire survey. PLoS One. 2012;7(12):e53201. https://doi.org/10.1371/journal.pone.0053201
- Mitter V, Michel G, Woelfli P, et al. The Swiss Childhood Cancer Registry. Annual Report 2011/2012. Bern: Institute of Social and Preventive Medicine, University of Bern; 2013.
- Oeffinger KC, Mertens AC, Hudson MM, Gurney JG, Casillas J, Chen H, et al. Health care of young adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Ann Fam Med. 2004;2(1):61–70. https://doi.org/10.1370/afm.26
- Haddy RI, Haddy TB. Lifetime follow-up care after childhood cancer. J Am Board Fam Med. 2010;23(5):647–54. https://doi.org/10.3122/jabfm.2010.05.100031
- Guilcher GMT, Fitzgerald C, Pritchard S. A questionnaire based review of long-term follow-up programs for survivors of childhood cancer in Canada. Pediatr Blood Cancer. 2009;52(1):113–5. https://doi.org/10.1002/pbc.21701
- Kinahan KE, Sharp LK, Arntson P, Galvin K, Grill L, Didwania A. Adult survivors of childhood cancer and their parents: experiences with survivorship and long-term follow-up. J Pediatr Hematol Oncol. 2008;30(9):651–8. https://doi.org/10.1097/MPH.0b013e31817e4a6a
- Earle EA, Davies H, Greenfield D, Ross R, Eiser C. Follow-up care for childhood cancer survivors: a focus group analysis. Eur J Cancer. 2005;41(18):2882–6. https://doi.org/10.1016/j.ejca.2005.08.028
- Absolom K, Eiser C, Michel G, Walters SJ, Hancock BW, Coleman RE, et al. Follow-up care for cancer survivors: views of the younger adult. Br J Cancer. 2009;101(4):561–7. https://doi.org/10.1038/sj.bjc.6605213
- Absolom K, Greenfield D, Ross R, Horne B, Davies H, Glaser A, et al. Predictors of clinic satisfaction among adult survivors of childhood cancer. Eur J Cancer. 2006;42(10):1421–7. https://doi.org/10.1016/j.ejca.2006.01.053
- Michel G, Greenfield D, Absolom K, Eiser C ; Late Effects Group Sheffield. Satisfaction with follow-up consultations among younger adults treated for cancer: the role of quality of life and psychological variables. Psychooncology. 2011;20(8):813–22. https://doi.org/10.1002/pon.1783
- Michel G, Greenfield DM, Absolom K, Ross RJ, Davies H, Eiser C ; Late Effects Group Sheffield. Follow-up care after childhood cancer: survivors’ expectations and preferences for care. Eur J Cancer. 2009;45(9):1616–23. https://doi.org/10.1016/j.ejca.2009.02.026
- Michel G, Gianinazzi ME, Eiser C, Bergstraesser E, Vetsch J, von der Weid N, et al.; Swiss Paediatric Oncology Group. Preferences for long-term follow-up care in childhood cancer survivors. Eur J Cancer Care (Engl). 2016;25(6):1024–33. https://doi.org/10.1111/ecc.12560
- Christen S, Vetsch J, Mader L, Dehler S, Korol D, Kuehni C, et al. Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors. Support Care Cancer. 2016;24(8):3425–36. https://doi.org/10.1007/s00520-016-3157-7
- Vetsch J, Rueegg CS, Mader L, Bergstraesser E, Diezi M, Kuehni CE, et al.; Swiss Paediatric Oncology Group. Parents’ preferences for the organisation of long-term follow-up of childhood cancer survivors. Eur J Cancer Care (Engl). 2017;e12649. https://doi.org/10.1111/ecc.12649
- Aslett H, Levitt G, Richardson A, Gibson F. A review of long-term follow-up for survivors of childhood cancer. Eur J Cancer. 2007;43(12):1781–90. https://doi.org/10.1016/j.ejca.2007.04.009
- Taylor A, Hawkins M, Griffiths A, Davies H, Douglas C, Jenney M, et al. Long-term follow-up of survivors of childhood cancer in the UK. Pediatr Blood Cancer. 2004;42(2):161–8. https://doi.org/10.1002/pbc.10482
- Oeffinger KC, Eshelman DA, Tomlinson GE, Buchanan GR. Programs for adult survivors of childhood cancer. J Clin Oncol. 1998;16(8):2864–7. https://doi.org/10.1200/JCO.1922.214.171.12464
- Mertens AC, Cotter KL, Foster BM, Zebrack BJ, Hudson MM, Eshelman D, et al. Improving health care for adult survivors of childhood cancer: recommendations from a delphi panel of health policy experts. Health Policy. 2004;69(2):169–78. https://doi.org/10.1016/j.healthpol.2003.12.008
- Kuehni CE, Rueegg CS, Michel G, Rebholz CE, Strippoli MP, Niggli FK, et al.; Swiss Paediatric Oncology Group (SPOG). Cohort profile: the Swiss childhood cancer survivor study. Int J Epidemiol. 2012;41(6):1553–64. https://doi.org/10.1093/ije/dyr142
- Gianinazzi ME, Essig S, Rueegg CS, von der Weid NX, Brazzola P, Kuehni CE, et al.; Swiss Paediatric Oncology Group (SPOG). Information provision and information needs in adult survivors of childhood cancer. Pediatr Blood Cancer. 2014;61(2):312–8. https://doi.org/10.1002/pbc.24762
- Groves RM. Nonresponse Rates and Nonresponse Bias in Household Surveys. Public Opin Q. 2006;70(5):646–75. https://doi.org/10.1093/poq/nfl033
- Groves RM, Singer E, Corning A. Leverage-saliency theory of survey participation: description and an illustration. Public Opin Q. 2000;64(3):299–308. https://doi.org/10.1086/317990
- McBride ML, Lorenzi MF, Page J, Broemeling AM, Spinelli JJ, Goddard K, et al. Patterns of physician follow-up among young cancer survivors: report of the Childhood, Adolescent, and Young Adult Cancer Survivors (CAYACS) research program. Can Fam Physician. 2011;57(12):e482–90.
- Langer T, Henze G, Beck JD ; For the German Late Effects Study Group in the German Society Pediatric Oncology and Hematology (GPOH). Basic methods and the developing structure of a late effects surveillance system (LESS) in the long-term follow-up of pediatric cancer patients in Germany. Med Pediatr Oncol. 2000;34(5):348–51. https://doi.org/10.1002/(SICI)1096-911X(200005)34:5<348::AID-MPO6>3.0.CO;2-U
- Holmqvist AS, Moëll C, Hjorth L, Lindgren A, Garwicz S, Wiebe T, et al. Increased health care utilization by survivors of childhood lymphoblastic leukemia is confined to those treated with cranial or total body irradiation: a case cohort study. BMC Cancer. 2014;14(1):419. https://doi.org/10.1186/1471-2407-14-419
- Rebholz CE, Reulen RC, Toogood AA, Frobisher C, Lancashire ER, Winter DL, et al. Health care use of long-term survivors of childhood cancer: the British Childhood Cancer Survivor Study. J Clin Oncol. 2011;29(31):4181–8. https://doi.org/10.1200/JCO.2011.36.5619
- Blaauwbroek R, Barf HA, Groenier KH, Kremer LC, van der Meer K, Tissing WJ, et al. Family doctor-driven follow-up for adult childhood cancer survivors supported by a web-based survivor care plan. J Cancer Surviv. 2012;6(2):163–71. https://doi.org/10.1007/s11764-011-0207-5
- Blaauwbroek R, Tuinier W, Meyboom-de Jong B, Kamps WA, Postma A. Shared care by paediatric oncologists and family doctors for long-term follow-up of adult childhood cancer survivors: a pilot study. Lancet Oncol. 2008;9(3):232–8. https://doi.org/10.1016/S1470-2045(08)70034-2
- Singer S, Gianinazzi ME, Hohn A, Kuehni CE, Michel G. General practitioner involvement in follow-up of childhood cancer survivors: a systematic review. Pediatr Blood Cancer. 2013;60(10):1565–73. https://doi.org/10.1002/pbc.24586
- Nathan PC, Daugherty CK, Wroblewski KE, Kigin ML, Stewart TV, Hlubocky FJ, et al. Family physician preferences and knowledge gaps regarding the care of adolescent and young adult survivors of childhood cancer. J Cancer Surviv. 2013;7(3):275–82. https://doi.org/10.1007/s11764-013-0271-0
- Blaauwbroek R, Zwart N, Bouma M, Meyboom-de Jong B, Kamps WA, Postma A. The willingness of general practitioners to be involved in the follow-up of adult survivors of childhood cancer. J Cancer Surviv. 2007;1(4):292–7. https://doi.org/10.1007/s11764-007-0032-z
- Suh E, Daugherty CK, Wroblewski K, Lee H, Kigin ML, Rasinski KA, et al. General internists’ preferences and knowledge about the care of adult survivors of childhood cancer: a cross-sectional survey. Ann Intern Med. 2014;160(1):11–7. https://doi.org/10.7326/M13-1941
- Poplack DG, Fordis M, Landier W, Bhatia S, Hudson MM, Horowitz ME. Childhood cancer survivor care: development of the Passport for Care. Nat Rev Clin Oncol. 2014;11(12):740–50. https://doi.org/10.1038/nrclinonc.2014.175
- Lack P. Ein Pass für das Leben nach dem Krebs. Basel: Childhood Cancer Switzerland; 2016.
- Niederer A. Leben nach dem Krebs - Neuer Pass soll Nachsorge verbessern. Zurich: NZZ; 2016.