Skip to main content

Advertisement

SpringerLink
Log in

Quality of life in long-term survivors following treatment for Hodgkin's disease during childhood and adolescence in the German multicentre studies between 1978 and 2002

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

The purpose of this study was to cross-sectionally assess quality of life (QoL) in survivors of childhood Hodgkin's disease (HD) in a cohort treated for HD in the successive German–Austrian therapy studies HD-78, HD-82, HD-85, HD-87, HD-90, HD-95, respectively, in accordance with the HD-Interval-Treatment recommendation between 1978 and 2002.

Patients and methods

Data from QoL questionnaires were provided by 1,202 (66 %) of 1,819 invited survivors. These included the EORTC QLQ-C30 and socio-demographic variables. Data of a homogenous sub-sample (n = 725) defined by age (21–41 years) and event- free-survival (no progress, relapse or secondary malignancies) were compared to an age-adjusted German reference sample (n = 659).

Results

While the global and physical QoL scores were comparable to those of the general population, survivors' mean scores were more than 10 points lower on the EORTC QLQ-C30 scales “Emotional” and “Social Functioning”. On the symptom scales, higher mean scores, exceeding 10 points, were obtained for the scales “Fatigue” and “Sleep”. In general, there was a gender effect showing lower functioning and higher symptom levels in women, most prominently in the group of young women (21–25 years). The results within the group of HD survivors could not be associated with the time since treatment, the age of HD survivors at diagnosis or the extent of therapy burden.

Conclusion

Clinicians engaged in follow-up care should be sensitive to aspects of fatigue and related (emotional) symptoms in HD childhood cancer survivors and encourage their patients to seek further support if 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

Abbreviations

AG:

Age group

ANOVA:

Analysis of variance

C:

Control group

CCSS:

Childhood Cancer Survivor Study

CCy:

Chemotherapy cycles

CNS:

Central nervous system

CF:

Cognitive functioning

DAL:

German Working Group of Leukemia Research

EF:

Emotional functioning

Gy:

Gray

GPOH:

German Society for Pediatric Hematology and Oncology

HD:

Hodgkin's disease

M:

Mean

PF:

Physical functioning

QoL:

Quality of life

SD:

Standard deviation

SF:

Social functioning

RF:

Role functioning

TB:

Therapy burden

References

  1. Heutte N, Flechtner HH, Mounier N, Mellink WA, for the EORTC GELA H8 Trial Group et al (2009) Quality of life after successful treatment of early-stage Hodgkin's lymphoma: 10-year follow-up of the EORTC GELA H8 randomised controlled trial. Lancet Oncol 10:1160–1170

    Article  PubMed  Google Scholar 

  2. Rüffer JU, Flechtner H, Tralls P, for the German Hodgkin Lymphoma Study Group et al (2003) Fatigue in long-term survivors of Hodgkin's lymphoma: a report from the German Hodgkin Lymphoma Study Group (GHSG). Eur J Cancer 39:2179–2186

    Article  PubMed  Google Scholar 

  3. Flechtner H, Rüffer JU, Henry-Amar M et al (1998) Quality of life assessment in Hodgkin's disease: a new comprehensive approach: first experiences from the EORTC/GELA and GHSG trials. EORTC Lymphoma Cooperative Group. Groupe D’Etude des Lymphomes de L’Adulte and German Hodgkin Study Group. Ann Oncol 9(Suppl 5):147–154

    Article  Google Scholar 

  4. Dörffel W, Körholz D (2010) Hodgkin's lymphoma. In: Estlin EJ, Gilbertson RJ, Wynn RF (eds) Pediatric hematology and oncology. Wiley-Blackwell, New York, pp 130–148

    Chapter  Google Scholar 

  5. Stanton AL (2006) Psychosocial concerns and interventions for cancer survivors. J Clin Oncol 24:5132–5137

    Article  PubMed  Google Scholar 

  6. Cantrell MA (2011) A narrative review summarizing the state of the evidence on the health-related quality of life among childhood cancer survivors. J Pediatr Oncol Nurs 28:75–82

    Article  PubMed  Google Scholar 

  7. McDougall J, Tsonis M (2009) Quality of life in survivors of childhood cancer: a systematic review of the literature (2001–2008). Support Care Cancer 17:1231–1246

    Article  PubMed  Google Scholar 

  8. Zeltzer LK, Recklitis C, Buchbinder D, Zebrack B, Casillas J, Tsao JC, Lu Q, Krull K (2009) Psychological status in childhood cancer survivors: a report from the Childhood Cancer Survivor Study. J Clin Oncol 27:2396–2404

    Article  PubMed Central  PubMed  Google Scholar 

  9. Lund LW, Schmiegelow K, Rechnitzer C, Johansen C (2011) A systematic review of studies on psychosocial late effects of childhood cancer: structures of society and methodological pitfalls may challenge the conclusions. Pediatr Blood Cancer 56:532–543

    Article  PubMed  Google Scholar 

  10. Zeltzer LK, Lu Q, Leisenring W, Tsao JC, Recklitis C, Armstrong G, Mertens AC, Robison LL, Ness KK (2008) Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: a report from the childhood cancer survivor study. Cancer Epidemiol Biomarkers Prev 17:435–446

    Article  PubMed  Google Scholar 

  11. Maunsell E, Pogany L, Barrera M et al (2006) Quality of life among long-term adolescent and adult survivors of childhood cancer. J Clin Oncol 24:2527–2535

    Article  PubMed  Google Scholar 

  12. Ishida Y, Honda M, Kamibeppu K et al (2011) Social outcomes and quality of life of childhood cancer survivors in Japan: a cross-sectional study on marriage, education, employment and health-related QOL (SF-36). Int J Hematol 93:633–644

    Article  PubMed  Google Scholar 

  13. Arden-Close E, Pacey A, Eiser C (2010) Health-related quality of life in survivors of lymphoma: a systematic review and methodological critique. Leuk Lymphoma 51:628–640

    Article  PubMed  Google Scholar 

  14. Mulrooney DA, Ness KK, Neglia JP et al (2008) Fatigue and sleep disturbance in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study (CCSS). Sleep 31:271–281

    PubMed Central  PubMed  Google Scholar 

  15. King MT (1996) The interpretation of scores from the EORTC quality of life questionnaire QLQ-C30. Qual Life Res 5:555–567

    Article  CAS  PubMed  Google Scholar 

  16. Brämswig JH, Hörnig-Franz I, Riepenhausen M et al (1990) The challenge of pediatric Hodgkin's disease: where is the balance between cure and long-term toxicity? A report of the West German multicenter studies DAL-HD-78, DAL-HD-82 and DAL-HD-85. Leuk Lymphoma 3:183–193

    Article  Google Scholar 

  17. Schellong G, Hörnig-Franz I, Rath B et al (1994) Reducing radiation dosage to 20–30 Gy in combined chemo-/radiotherapy of Hodgkin's disease in childhood. A report of the cooperative DAL-HD-87 therapy study. Klin Padiatr 206:253–262

    Article  CAS  PubMed  Google Scholar 

  18. Schellong G (1996) Treatment of children and adolescents with Hodgkin's disease: the experience of the German–Austrian Paediatric Study Group. Baillieres Clin Haematol 9:619–634

    Article  CAS  PubMed  Google Scholar 

  19. Schellong G, Potter R, Brämswig J et al (1999) High cure rates and reduced long-term toxicity in pediatric Hodgkin's disease: the German–Austrian multicenter trial DAL-HD-90. The German–Austrian Pediatric Hodgkin's Disease Study Group. J Clin Oncol 17:3736–3744

    CAS  PubMed  Google Scholar 

  20. Dörffel W, Lüders H, Rühl U et al (2003) Preliminary results of the multicenter trial GPOH-HD 95 for the treatment of Hodgkin's disease in children and adolescents: analysis and outlook. Klin Padiatr 215:139–145

    Article  PubMed  Google Scholar 

  21. Lüders H, Marciniak H, Rühl U et al (2011) Importance of prospective treatment planning by a reference center in pediatric Hodgkin lymphoma—a retrospective assessment of the HD-interval period following the trial GPOH-HD 95. Pediatr Blood Cancer 880 (abstr I-ISCAYAHL)

  22. Brämswig JH, Heimes U, Heiermann E et al (1990) The effects of different cumulative doses of chemotherapy on testicular function. Results in 75 patients treated for Hodgkin's disease during childhood or adolescence. Cancer 65:1298–1302

    Article  PubMed  Google Scholar 

  23. Schellong G, Riepenhausen M, Creutzig U et al (1997) Low risk of secondary leukemias after chemotherapy without mechlorethamine in childhood Hodgkin's disease. German–Austrian Pediatric Hodgkin's Disease Group. J Clin Oncol 15:2247–2253

    CAS  PubMed  Google Scholar 

  24. Schellong G, Riepenhausen M (2004) Late effects after therapy of Hodgkin's disease: update 2003/04 on overwhelming post-splenectomy infections and secondary malignancies. Klin Padiatr 216:364–369

    Article  CAS  PubMed  Google Scholar 

  25. Dörffel W, Riepenhausen M, Ludwig WD, Schellong G (2010) Langzeitfolgen nach Therapie eines Hodgkin-Lymphoms bei Kindern und Jugendlichen. J Onkologie 9:449–456

    Google Scholar 

  26. Schellong G, Riepenhausen M, Bruch C et al (2010) Late valvular and other cardiac diseases after different doses of mediastinal radiotherapy for Hodgkin disease in children and adolescents: report from the longitudinal GPOH follow-up project of the German-Austrian DAL-HD studies. Pediatr Blood Cancer 55:1145–1152

    Article  PubMed  Google Scholar 

  27. Aaronson NK, Ahmedzai S, Bergman B et al (1993) The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85:365–376

    Article  CAS  PubMed  Google Scholar 

  28. Hjermstad MJ, Fayers PM, Bjordal K, Kaasa S (1998) Using reference data on quality of life—the importance of adjusting for age and gender, exemplified by the EORTC QLQ-C30 (+3). Eur J Cancer 34:1381–1389

    Article  CAS  PubMed  Google Scholar 

  29. Fayers P, Aaronson N, Bjordal K, Groenvold M, Curran D, Bottomley A (2001) EORTC QLQ-C30 scoring manual, 3rd edn. EORTC, Brüssel

    Google Scholar 

  30. Schwarz R, Hinz A (2001) Reference data for the quality of life questionnaire EORTC QLQ-C30 in the general German population. Eur J Cancer 37:1345–1351

    Article  CAS  PubMed  Google Scholar 

  31. Rost D (2005) Interpretation und Bewertung pädagogisch-psychologischer Studien. Beltz, Weinheim

  32. Singer S, Kuhnt S, Zwerenz R et al (2011) Age- and sex-standardised prevalence rates of fatigue in a large hospital-based sample of cancer patients. Br J Cancer 105(3):445–451

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  33. Dieluweit U, Debatin KM, Grabow D et al (2010) Social outcomes of long-term survivors of adolescent cancer. Psychooncology 19:1277–1284

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

We are indebted to all participating survivors and/or parents as well as the data managers in this investigation, especially Angelika Görgen. This work was funded by a project grant of the German Childhood Cancer Trust (Deutsche Kinderkrebsstiftung), grant number: DKS 2005/04.

Author information

Authors and Affiliations

  1. Department of Pediatric Hematology and Oncology, University Hospital Münster, Albert-Schweitzer-Campus 1, Bldg. A1, 48149, Münster, Germany

    Gabriele Calaminus, Katja Baust, Carmen Teske, Marianne Riepenhausen, Jürgen Brämswig & Günther Schellong

  2. Hospital for Children and Adolescents, HELIOS Klinikum Berlin-Buch, Schwanebecker Chaussee 50, 13125, Berlin, Germany

    Wolfgang Dörffel

  3. Clinic for Child and Adolescent Psychiatry, Otto-von-Guericke-University Magdeburg, Leipziger Str. 44, 39120, Magdeburg, Germany

    Hans-Henning Flechtner

  4. Division of Epidemiology and Health Services Research, Institute of Medical Biostatistics, Epidemiology, and Informatics, University Medical Centre Mainz, Obere Zahlbacher Straße 69, 55131, Mainz, Germany

    Susanne Singer

  5. Department of Medical Psychology and Medical Sociology, University of Leipzig, Philipp-Rosenthal-Str. 55, 04103, Leipzig, Germany

    Andreas Hinz

Authors
  1. Gabriele Calaminus
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Wolfgang Dörffel
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Katja Baust
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Carmen Teske
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Marianne Riepenhausen
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Jürgen Brämswig
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Hans-Henning Flechtner
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Susanne Singer
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Andreas Hinz
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Günther Schellong
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Gabriele Calaminus.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Calaminus, G., Dörffel, W., Baust, K. et al. Quality of life in long-term survivors following treatment for Hodgkin's disease during childhood and adolescence in the German multicentre studies between 1978 and 2002. Support Care Cancer 22, 1519–1529 (2014). https://doi.org/10.1007/s00520-013-2114-y

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-013-2114-y

Keywords

Search

Navigation