Supportive Care in Cancer

, Volume 4, Issue 2, pp 118–128 | Cite as

Patients' and doctors' perception of long-term morbidity in patients with testicular cancer clinical stage I

A descriptive pilot study
  • Sophie D. Fosså
  • Clare Moynihan
  • Said Serbouti
Original Article


Patient-based questionnaires were designed with the aim to identify and rank long-term somatic and psychosocial morbidity in patients with low-stage testicular cancer. A further intention was to compare patients' assessments with experienced doctors' general opinion on quality of life items in cured testicular cancer patients. In pilot study I, 103 tumour-free patients ranked items of physical and psychosocial morbidity after having had various kinds of treatment. Though the ranking procedure appeared to cause some difficulties amongst the patients and subsequently was abandoned, the results indicated considerable differences between the patients' and doctors' evaluations. In pilot study II patients were asked to score the different items. The questionnaire of pilot study II was completed by 107 patients from the Norwegian Radium Hospital (NRH) and 99 relapse-free patients from the Royal Marsden Hospital (RMH) with testicular cancer stage I at least 1 year after infradiaphragmatic radiotherapy (n = 94) or adjuvant chemotherapy (2 cycles,n=26), or patients who had been followed on the surveillance program (n = 86). A total of 93 doctors completed a similar questionnaire, thereby expressing their general opinion on long-term morbidity in comparable testicular cancer patients as seen during routine clinical follow-up. Both the irradiated patients and those on the surveillance program reported slight degrees of Raynaud-like phenomena, neurotoxicity and ototoxicity, most probably representing “background morbidity” in an age-matched general male population. Doctors tended to underestimate their patients' somatic morbidity, but often overestimated the degree of psychological distress, in particular in patients on the surveillance program. Significant differences between RMH and NRH patients with regard to sexual problems and to leisure time activity may be explained by cultural differences in the two countries. The items presented in the questionnaire used identify important issues for patients cured of testicular cancer which may be used in future multicentre trans-cultural studies assessing these patients' quality of life. This will provide sufficient data for psychometric testing and, together with the findings from patients' free comments, support the final design of a testicular cancer quality of life module.

Key words

Testicular cancer stage I Long-term psychosocial and physical morbidity Doctors' and patients' assessment 


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. 1.
    Aaronson NK (1991) Methodological issues in assessing the quality of life of cancer patients. Cancer 67:844–850PubMedGoogle Scholar
  2. 2.
    Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Fletcher H, Fleishman SB, Haes JCJM de, Kaasa S, Klee M, Osoba D, Razavi D, Role PB, Schraub S, Sneeuw K, Sullivan M, Takeda F, for the European Organization for Research and Treatment of Cancer Study Group on Quality of Life (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 85:365–376PubMedGoogle Scholar
  3. 3.
    Bergman B, Sullivan M, Sörenson S (1992) Quality of life during chemotherapy for small cell lung cancer. II. A longitudinal study of the EORTC Core Quality of Life Questionnaire and comparison with the Sickness Impact Profile. Acta Oncol 31:19–28PubMedGoogle Scholar
  4. 4.
    Boyer M, Raghavan D (1992) Toxicity of treatment of germ cell tumors. Semin Oncol 19:128–142PubMedGoogle Scholar
  5. 5.
    Cassileth BR, Soloway MS, Vogelzang NJ, Chou JM, Schellhammer PD, Seidmon EJ, Kennealey GT. members of the Zoladex Prostate Cancer Study Group (1992) Quality of life and psychological status in stage D prostate cancer. Quality Life Res 1:323–330Google Scholar
  6. 6.
    Cullen MH, Cook J, Woodroffe C, Murphy A, Warwick J, Ferry D (1994) Surveillance or immediate adjuvant chemotherapy for stage I nonseminomatous germ cell tumours of the testis (NSGCTT). Br J Cancer 69 [Suppl 21]: 14Google Scholar
  7. 7.
    Donohue JP, Thornhill JA, Foster RS, Rowland RG, Bihrle R (1993) Retroperitoneal lymphadenectomy for clinical stage A testis cancer (1965 to 1989): modifications of technique and impact on ejaculation. Urology 149:237–243Google Scholar
  8. 8.
    Douchez J, Droz JP, Desclaux B, Allain Y, Fargeot P, Caty A, Charrot P (1993) Quality of life in long-term survivors of nonseminomatous germ cell testicular tumors. Urology 149:498–501Google Scholar
  9. 9.
    Fallowfield L (1990) The quality of life. The missing measurement in health care. Methodological issues. (Human horizon series) Souvenir Press, London, pp 43–44Google Scholar
  10. 10.
    Feldstein ML (1991) Quality-of-life-adjusted survival for comparing cancer treatments. A commentary on TWiST and Q-TWiST. Cancer 67:851–854PubMedGoogle Scholar
  11. 11.
    Fernandez C, Rosell R, Abad-Esteve A, Monras P, Moreno I, Serichol M, Roviralta M (1989) Quality of life during chemotherapy in non-small cell lung cancer patients. Acta Oncol 28:29–33PubMedGoogle Scholar
  12. 12.
    Finkelstein DM, Cassileth BR, Bonomi PD, et al (1988) A pilot study of the Functional Living Index-Cancer (FLIC). Scale for the assessment of quality of life for metastatic lung cancer patients. An Eastern Cooperative Oncology Group study. Am J Clin Oncol 11:630–633PubMedGoogle Scholar
  13. 13.
    Fossa SD, Aass N, Kaalhus O (1989) Radiotherapy for testicular seminoma stage I. Treatment results and longterm post-irradiation morbidity in 365 patients. Int J Radiat Oncol Biol Phys 16:383–388PubMedGoogle Scholar
  14. 14.
    Fosså SD, Aaronson NK, Newling D, Cangh PJ van, Denis L, Kurth K-H, Pauw M de, members of the EORTC GU Group (1990) Subjective response to treatment of hormone-resistant metastatic prostatic cancer. Eur J Cancer Clin Oncol 26:1133–1136Google Scholar
  15. 15.
    Fosså SD, Jacobsen A-B, Aass N, Heilo A, Stenwig AE, Kummen O, Johannessen NB, Waaler G, Øgreid P, Borge L, Urnes T, Bjerklund-Johansen T (1994) How safe is surveillance in patients with histologically low-risk non-seminomatous testicular cancer in a geographically extended country with limited CT resources? Br J Cancer 74:652–658Google Scholar
  16. 16.
    Ganz PA, Haskell CM, Figlin RA, La Soto N, Siau J, for the UCLA Solid Tumor Group (1988) Estimating the quality of life in a clinical trial of patients with metastatic lung cancer using the Karnofsky Performance Status and the Functional Living Index-Cancer. Cancer 61:849–856PubMedGoogle Scholar
  17. 17.
    Haes JC de, Knippenberg FC van, Neut JP (1990) Measuring psychological and physical distress in cancer patients: structure and application of the Rotterdam Symptom Checklist. Br J Cancer 62:1034–1038PubMedGoogle Scholar
  18. 18.
    Kaasa S, Aass N, Mastekaasa A, Lund E, Fossa SD (1991) Psychosocial well-being in testicular cancer patients. Eur J Cancer 27:1091–1095PubMedGoogle Scholar
  19. 19.
    Kiebert GM, Haes JC de, Velde CJ van de (1991) The impact of breast-conserving treatment and mastectomy on the quality of life of early-stage breast cancer patients. A review. J Clin Oncol 9:1059–1070PubMedGoogle Scholar
  20. 20.
    Maunsell E, Brisson J, Deschênes L (1992) Psychological distress after initial treatment of breast cancer. Cancer 70:120–125PubMedGoogle Scholar
  21. 21.
    Moynihan C (1987) Testicular cancer: the psychosocial problems of patients and their relatives. Cancer Surv 6:477–510PubMedGoogle Scholar
  22. 22.
    O'Youg J, McPeek B (1987) Quality of life variables in surgical trials. J Chronic Dis 40:513–522PubMedGoogle Scholar
  23. 23.
    Parliament MB, Danjoux CE, Clayton T (1985) Is cancer treatment toxicity accurately reported? Int J Radiat Oncol Biol Phys 11:603–608PubMedGoogle Scholar
  24. 24.
    Parmar H, Phillips RH, Lightman SL, Edwards L (1988) How would you like to have an orchidectomy for advanced prostatic cancer? Am J Clin Oncol 11:160–168Google Scholar
  25. 25.
    Pont J, Höltl W, Kosak D, Machacek E, Kienzer H, Julcher H, Honetz N (1990) Risk-adapted treatment choice in stage I nonseminomatous testicular germ cell cancer by regarding vascular invasion in the primary tumor: a prospective trial. J Clin Oncol 8:16–20PubMedGoogle Scholar
  26. 26.
    Read G, Stenning SP, Cullen MH, Parkinson MC, Horwich A, Kaye SB, Cook PA, for the Medical Research Council Testicular Tumors Working Party (1992) Medical Research Council prospective study of surveillance for stage I testicular teratoma. J Clin Oncol 10:1762–1768PubMedGoogle Scholar
  27. 27.
    Rieker PP, Fitzegerald EM, Kalish LA (1990) Adaptive behavioral responses to potential infertility among survivors of testis cancer. J Clin Oncol 8:347–355PubMedGoogle Scholar
  28. 28.
    Slevin ML, Plant H, Lynch D, Drinkwater J, Gregory WM (1988) Who should measure quality of life, the doctor or the patient? Br J Cancer 57:109–122PubMedGoogle Scholar
  29. 29.
    Smart CR, Yates JW (1987) Quality of life. Cancer 60:620–622PubMedGoogle Scholar
  30. 30.
    Sprangers MAG, Cull A, Bjordal K, Groenvold M, Aaronson NK, for the EORTC Study Group on Quality of Life (1993) The European Organization for Research and Treatment of Cancer approach to quality of life assessment: guidelines for developing questionnaire modules. Quality Life Res 2:287–295Google Scholar
  31. 31.
    Tannock IF, Gospodarowicz M, Meakin W, et al (1989) Treatment of metastatic prostatic cancer with low-dose prednisone: evaluation of pain and quality of life as pragmatic indices of response. J Clin Oncol 7:590–597PubMedGoogle Scholar

Copyright information

© Springer-Verlag 1996

Authors and Affiliations

  • Sophie D. Fosså
    • 1
  • Clare Moynihan
    • 2
  • Said Serbouti
    • 3
  1. 1.Department of Medical Oncology and RadiotherapyThe Norwegian Radium HospitalMontebelloOsloNorway
  2. 2.The Royal Marsden HospitalSurreyUK
  3. 3.EORTC Data CenterBrusselsBelgium

Personalised recommendations