Skip to main content

Advertisement

SpringerLink
Log in

Attendance at a survivorship clinic: impact on knowledge and psychosocial adjustment

  • Published:
Journal of Cancer Survivorship Aims and scope Submit manuscript

Abstract

Purpose

Due to their heightened risk of developing late-occurring adverse outcomes, pediatric cancer survivors are advised to receive follow-up care in specialized Survivor Clinics. However, little is known about the impact of attending such clinics on psychosocial adjustment, knowledge, and morbidity. This study assesses the differences between those who attended a Survivorship Clinic and those who did not on knowledge, perception of risk, and psychosocial adjustment.

Methods

We assessed 102 survivors who attended our Long-Term Follow-Up (LTFU) Clinic and 71 survivors never seen in a specialized clinic (non-LTFU). Participants were diagnosed at least 5 years prior to the assessment, were at least 20 years old, and had no evidence of active disease. Groups were matched on gender, age at cancer diagnosis, diagnosis, and race.

Results

On average, participants were currently 30 years of age and had been diagnosed with cancer around age 12. Most common reasons that non-LTFU survivors did not attend the clinic were “not aware” (71 %) or “not interested” (16 %). Survivors in each group were able to accurately report their cancer diagnosis, but few knew specific treatment information. There were no significant differences regarding survivors’ perceptions of risk of future health problems with both groups similarly underestimating their risks. A significant minority in each group reported psychological or emotional problems (16–18 %), post-traumatic stress disorder (4.2–6.9 %), and/or psychological distress (7.8–19.7 %).

Conclusions

Survivors are in need of continued education about their specific cancer treatments, recommended follow-up practices, the importance of survivorship care, and their specific risks for late effects.

Implications for Cancer Survivors

Among those childhood cancer survivors who do attend a Survivor clinic, a majority are in need of continued education about their specific cancer treatments, recommended follow-up practices, and risk of late effects. As many survivors of pediatric cancer appear to be unaware of the existence of Survivor clinics, improved methods of transitioning survivors after completion of treatment are needed.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. Ries LAG, Smith MA, Gurney JG, Linet M, Tamra T, Young JL et al. editors. Cancer incidence and survival among children and adolescents: United States SEER Program 1975–1995 http://seer.cancer.gov/publications/childhood/. SEER Program. NIH Pub. No. 99-4649. Bethesda, MD1999.

  2. Mariotto AB, Rowland JH, Yabroff KR, Scoppa S, Hachey M, Ries L, et al. Long-term survivors of childhood cancers in the United States. Cancer Epidemiol Biomarkers Prev. 2009;18(4):1033–40. doi:10.1158/1055-9965.EPI-08-0988.

    Article  PubMed  Google Scholar 

  3. Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355(15):1572–82. doi:10.1056/NEJMsa060185.

    Article  PubMed  CAS  Google Scholar 

  4. Sklar CA. Overview of the effects of cancer therapies: the nature, scale and breadth of the problem. Acta Paediatr Suppl. 1999;88(433):1–4.

    Article  PubMed  CAS  Google Scholar 

  5. Mertens AC, Yasui Y, Neglia JP, Potter JD, Nesbit Jr ME, Ruccione K, et al. Late mortality experience in five-year survivors of childhood and adolescent cancer: the Childhood Cancer Survivor Study. J Clin Oncol: Off J Am Soc Clin Oncol. 2001;19(13):3163–72.

    CAS  Google Scholar 

  6. Zeltzer LK, Recklitis C, Buchbinder D, Zebrack B, Casillas J, Tsao JC, et al. Psychological status in childhood cancer survivors: a report from the Childhood Cancer Survivor Study. J Clin Oncol: Off J Am Soc Clin Oncol. 2009;27(14):2396–404. doi:10.1200/JCO.2008.21.1433.

    Article  Google Scholar 

  7. Hobbie WL, Stuber M, Meeske K, Wissler K, Rourke MT, Ruccione K, et al. Symptoms of posttraumatic stress in young adult survivors of childhood cancer. J Clin Oncol: Off J Am Soc Clin Oncol. 2000;18(24):4060–6.

    CAS  Google Scholar 

  8. Joubert D, Sadeghi MR, Elliott M, Devins GM, Laperriere N, Rodin G. Physical sequelae and self-perceived attachment in adult survivors of childhood cancer. Psychooncology. 2001;10(4):284–92.

    Article  PubMed  CAS  Google Scholar 

  9. Lansky SB, List MA, Ritter-Sterr C. Psychosocial consequences of cure. Cancer. 1986;58(2):529–33.

    Article  PubMed  CAS  Google Scholar 

  10. Mulhern RK, Wasserman AL, Friedman AG, Fairclough D. Social competence and behavioral adjustment of children who are long-term survivors of cancer. Pediatrics. 1989;83(1):18–25.

    PubMed  CAS  Google Scholar 

  11. Zeltzer LK, Chen E, Weiss R, Guo MD, Robison LL, Meadows AT, et al. Comparison of psychologic outcome in adult survivors of childhood acute lymphoblastic leukemia versus sibling controls: a cooperative Children’s Cancer Group and National Institutes of Health study. J Clin Oncol: Off J Am Soc Clin Oncol. 1997;15(2):547–56.

    CAS  Google Scholar 

  12. National Cancer Policy Board (U.S.), Weiner SL, Simone JV. Childhood cancer survivorship: improving care and quality of life. Washington, DC: National Academies Press; 2003.

    Google Scholar 

  13. Oeffinger KC, Tonorezos ES. The cancer is over, now what?: Understanding risk, changing outcomes. Cancer. 2011;117(10):2250–7. doi:10.1002/cncr.26051.

    Article  PubMed  Google Scholar 

  14. Tonorezos ES, Oeffinger KC. Survivorship after childhood, adolescent, and young adult cancer. Cancer J. 2008;14(6):388–95. doi:10.1097/PPO.0b013e31818f5aba.

    Article  PubMed  CAS  Google Scholar 

  15. Hollen PJ, Hobbie WL. Establishing comprehensive specialty follow-up clinics for long-term survivors of cancer. Providing systematic physiological and psychosocial support. Support Care Cancer. 1995;3(1):40–4.

    Article  PubMed  CAS  Google Scholar 

  16. Neglia JP, Nesbit Jr ME. Care and treatment of long-term survivors of childhood cancer. Cancer. 1993;71(10):3386–91.

    Article  PubMed  CAS  Google Scholar 

  17. Hewitt ME, Greenfield S, Stovall E. National Cancer Policy Board (U.S.). Committee on Cancer Survivorship: Improving Care and Quality of Life. From cancer patient to cancer survivor: lost in transition. Washington, D.C.: National Academies Press; 2006.

    Google Scholar 

  18. Salz T, Oeffinger KC, McCabe MS, Layne TM, Bach PB. Survivorship care plans in research and practice. CA Cancer J Clin. 2012. doi:10.3322/caac.20142.

    PubMed  Google Scholar 

  19. Masera G, Chesler M, Jankovic M, Eden T, Nesbit ME, Van Dongen-Melman J, et al. SIOP Working Committee on Psychosocial issues in pediatric oncology: guidelines for care of long-term survivors. Med Pediatr Oncol. 1996;27(1):1–2. doi:10.1002/(SICI)1096-911X(199607)27:1<1::AID-MPO1>3.0.CO;2-K.

    Article  PubMed  CAS  Google Scholar 

  20. Blacklay A, Eiser C, Ellis A. Development and evaluation of an information booklet for adult survivors of cancer in childhood. The United Kingdom Children’s Cancer Study Group Late Effects Group. Arch Dis Child. 1998;78(4):340–4.

    Article  PubMed  CAS  Google Scholar 

  21. Eiser C, Hill JJ, Blacklay A. Surviving cancer; what does it mean for you? An evaluation of a clinic based intervention for survivors of childhood cancer. Psychooncology. 2000;9(3):214–20.

    Article  PubMed  CAS  Google Scholar 

  22. Hudson MM, Tyc VL, Jayawardene DA, Gattuso J, Quargnenti A, Greenwald C, et al. Feasibility of implementing health promotion interventions to improve health-related quality of life. Int J Cancer Suppl. 1999;12:138–42.

    Article  PubMed  CAS  Google Scholar 

  23. Kadan-Lottick NS, Robison LL, Gurney JG, Neglia JP, Yasui Y, Hayashi R, et al. Childhood cancer survivors’ knowledge about their past diagnosis and treatment—Childhood Cancer Survivor Study. JAMA. 2002;287(14):1832–9.

    Article  PubMed  Google Scholar 

  24. Childhood Cancer Survivor Study (CCSS). Original Cohort and Expanded Cohort Questionnaires http://ccss.stjude.org/documents/questionnaires.

  25. National Health Interview Survey (NHIS) Cancer Control Module. In: Centers for Disease Control and Prevention http://www.cdc.gov/nchs/nhis.htm. 2000.

  26. Ware Jr JE, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30(6):473–83.

    Article  PubMed  Google Scholar 

  27. Derogatis LR. Brief Symptom Inventory (BSI) administration, scoring & procedures manual. Minneapolis: National Computer Systems, Persons; 1993.

    Google Scholar 

  28. Zabora J, BrintzenhofeSzoc K, Jacobsen P, Curbow B, Piantadosi S, Hooker C, et al. A new psychosocial screening instrument for use with cancer patients. Psychosomatics. 2001;42(3):241–6. doi:10.1176/appi.psy.42.3.241.

    Article  PubMed  CAS  Google Scholar 

  29. Weathers FW, Ford J. Psychometric properties of the PTSD checklist (PCL-C, PCL-S, PCL-M, PCL-PR). In: Stamm BH, editor. Measurement of stress, trauma, and adaptation. Lutherville: Sidran; 1996. p. ix. 445 p.

    Google Scholar 

  30. Weathers FW, Litz BT, Herman DS, Huska JA, Keane TM. The PTSD Checklist (PCL): reliability, validity, and diagnostic utility. Annual Meeting of the International Society for Traumatic Stress Studies; San Antonio, Texas 1993.

  31. Tedeschi RG, Calhoun LG. The Posttraumatic Growth Inventory: measuring the positive legacy of trauma. J Trauma Stress. 1996;9(3):455–71.

    Article  PubMed  CAS  Google Scholar 

  32. Northouse LL. Mastectomy patients and the fear of cancer recurrence. Cancer Nurs. 1981;4(3):213–20.

    Article  PubMed  CAS  Google Scholar 

  33. Weiss DS. The Impact of Event Scale—Revised. In: Wilson JP, Keane TM, editors. Assessing psychological trauma and PTSD. 2nd ed. New York: Guilford; 2004. p. xvii. 668 p.

    Google Scholar 

  34. Werba BE, Hobbie W, Kazak AE, Ittenbach RF, Reilly AF, Meadows AT. Classifying the intensity of pediatric cancer treatment protocols: The Intensity of Treatment Rating Scale 2.0 (ITR-2). Pediatr Blood Cancer. 2007;48(7):673–7. doi:10.1002/Pbc.21184.

    Article  PubMed  Google Scholar 

  35. Benjamini Y, Hochberg Y. Controlling the false discovery rate—a practical and powerful approach to multiple testing. J R Stat Soc Ser B-Methodol. 1995;57(1):289–300.

    Google Scholar 

  36. Brabant G, Toogood AA, Shalet SM, Frobisher C, Lancashire ER, Reulen RC, et al. Hypothyroidism following childhood cancer therapy—an under diagnosed complication. Int J Cancer. 2012;130(5):1145–50. doi:10.1002/ijc.26086.

    Article  PubMed  CAS  Google Scholar 

Download references

Acknowledgments

This research was supported in part by the Langeloth Foundation (Sklar) and American Cancer Society MRSG-07-165-01-CPPB (Ford).

Conflicts of Interest

The authors declare they have no conflicts of interest

Author information

Authors and Affiliations

  1. Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, 641 Lexington Avenue, 7th Floor, New York, NY, 10022, USA

    Jennifer S. Ford

  2. Department of Epidemiology and Biostatistics, Memorial Sloan-Kettering Cancer Center, New York, NY, USA

    Joanne F. Chou

  3. Department of Pediatrics, Memorial Sloan-Kettering Cancer Center, New York, NY, USA

    Jennifer S. Ford & Charles A. Sklar

Authors
  1. Jennifer S. Ford
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Joanne F. Chou
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Charles A. Sklar
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Jennifer S. Ford.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Ford, J.S., Chou, J.F. & Sklar, C.A. Attendance at a survivorship clinic: impact on knowledge and psychosocial adjustment. J Cancer Surviv 7, 535–543 (2013). https://doi.org/10.1007/s11764-013-0291-9

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11764-013-0291-9

Keywords

Search

Navigation