Skip to main content
SpringerLink
Log in

Participation Behavior of Bladder Cancer Survivors in a Medical Follow-Up Surveyon Quality of Life in France

  • Published:
European Journal of Epidemiology Aims and scope Submit manuscript

Abstract

The objectives were to ascertain the socio-demographic background of bladder cancer survivors acting on their participation behavior to a medical follow-up survey. This population-based quality of life (QOL) survey was realized by mail with 201 survivors (M:F = 171:30, median age = 74 years, range 33–99) randomly selected from the 1731 patients diagnosed between 1990 and 1994 in two regions of France. Response rate was 47.3%. Female and younger survivors were more receptive to the survey than were males and older survivors. Furthermore, survivors who had experienced a cystectomy were more responsive than those who did not. Similarly, the length of time since a major treatment was significant, with a shorter interval associated with a better response. The missing item rate in the QOL questionnaire was 13.8%. Other variables were not significantly associated with acceptance of the survey. Missing items among the responders were found more often in the sub-scale of social/familial well-being (15.6%). The older and male subjects left more questions blank. The reason for this low response rate can be categorized to the following three points:(1) Physically and psychologically not motivated to answer, (2) sensitive and private content of the question, and (3) methodological problem. Clearer concepts of the research would have helped the participants understand the objectives and better relate to the survey. Subsequently, these three issues should be given more attention in organizing questionnaire survey for improved participation rates in future studies.

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

Similar content being viewed by others

References

  1. Dillman DA. Mail and internet surveys — The tailored design method, 2nd edn. New York: John Wiley & Sons, Inc., 2000.

    Google Scholar 

  2. Sitzia J, Wood N. Response rate in patient satisfaction research: An analysis of 210 published studies. Int J Qual Health Care 1998; 10: 311-317.

    PubMed  Google Scholar 

  3. Hayashi M, Iwanaga T, Mitoku K, Minowa M. Getting a high response rate of sexual behavior survey among the general population in Japan: Three different methods of survey on sexual behavior. J Epidemiol 1999; 9: 107-113.

    PubMed  Google Scholar 

  4. Olschewski M, Schulgen G, Schumacher M, Altman DG. Quality of life assessment in clinical cancer research. Br J Cancer 1994; 70: 1-5.

    PubMed  Google Scholar 

  5. Cella DF, Tulsky DS, Gray G, et al. The functional assessment of cancer therapy scale: Development and validation of the general measure. J Clin Oncol 1993; 11: 570-579.

    PubMed  Google Scholar 

  6. Hart S, Skinner EC, Meyerowitz BE, Boyd S, Lieskovsky G, Skinner DG. Quality of life after radical cystectomy for bladder cancer in patients with an ileal conduit, cutaneous or urethral kock pouch. J Urol 1999; 162: 77-81.

    PubMed  Google Scholar 

  7. Ferrell BR, Dow KH, Grant M. Measurement of the quality of life in cancer survivors. Qual Life Res 1995; 4: 523-531.

    PubMed  Google Scholar 

  8. De Melker HE, Nagelkerde NJ, Conyn-van Spaendonck MA. Non-participation in a population-based seroprevalence study of vaccine-preventable diseases. Epidemiol Infect 2000; 124: 255-262.

    PubMed  Google Scholar 

  9. Benfante R, Reed D, MacLean C, Kagan A. Response bias in the Honolulu Heart Program. Am J Epidemiol 1989; 130: 1088-1100.

    PubMed  Google Scholar 

  10. Hoffman SC, Burke AE, Helzlsouer KJ, Comstock GW. Controlled trial of the effect of length, incentives, and follow-up techniques on response to a mailed questionnaire. Am J Epidemiol 1998; 148: 1007-1011.

    PubMed  Google Scholar 

  11. Chou P, Kuo HS, Chen CH, Lin HC. Characteristics of non-participants and reasons for non-participation in a population survey in Kin-Hu, Kinmen. Eur J Epidemiol 1997; 13: 195-200.

    PubMed  Google Scholar 

  12. Mallinson S. The short-form 36 and older people: Some problems encountered when using postal administration. J Epidemiol Community Health 1998; 52: 324-328.

    PubMed  Google Scholar 

  13. IGEO Patient compliance with quality of life questionnaires. Italian group for evaluation of outcomes in oncology (IGEO). Tumori 1999; 85: 92-95.

    Google Scholar 

  14. Profeta ML, Ferrante P, Porro De' Somenzi C. A survey on factors affecting acceptance of measles vaccine. Eur J Epidemiol 1986; 2: 128-133.

    PubMed  Google Scholar 

  15. Ronmark E, Lundqvist A, Lundback B, Nystrom L. Non-responders to a postal questionnaire on respiratory symptoms and diseases. Eur J Epidemiol 1999; 15: 293-299.

    PubMed  Google Scholar 

  16. Thorogood M, Coulter A, Jones L, Yudkin P, Muir J, Mant D. Factors affecting response to an invitation to attend for a health check. J Epidemiol Commun Health 1993; 47: 224-228.

    Google Scholar 

  17. Gordon DR. Embodying illness, embodying cancer. Cult Med Psychiatry 1990; 14: 275-297.

    PubMed  Google Scholar 

  18. Berthier F, Grosclaude P, Bocquet H, Faliu B, Cayla F, Machelard-Roumagnac M. Prevalence of cancer in the elderly: Discrepancies between self-reported and registry data. Br J Cancer 1997; 75: 445-447.

    PubMed  Google Scholar 

  19. Muzzin LJ, Anderson NJ, Figueredo AT, Gudelis SO. The experience of cancer. Soc Sci Med 1994; 38: 1201-1208.

    PubMed  Google Scholar 

  20. Benbassat J, Pilpel D, Tidhar M. Patients' preferences for participation in clinical decision making: A review of published surveys. Behav Med 1998; 24: 81-88.

    PubMed  Google Scholar 

  21. Faliu B, Berthier F, Grosclaude P, et al. Prevalence of cancer, health care and daily life assistance in people aged 75 or over living in the Tarn area (France). Bull Cancer 1997; 84: 169-174.

    PubMed  Google Scholar 

  22. Roberts H, Pearson JC, Dengler R. Impact of a postcard versus a questionnaire as a first reminder in a postal lifestyle survey. J Epidemiol Commun Health 1993; 47: 334-335.

    Google Scholar 

  23. Kalantar JS, Talley NJ. The effects of lottery incentive and length of questionnaire on health survey response 320 rates: A randomized study. J Clin Epidemiol 1999; 52: 1117-1122.

    PubMed  Google Scholar 

  24. Rodary C, Leplege A, Hill C. Evaluation of the quality of life in clinical research in cancerology. Bull Cancer 1998; 85: 140-148.

    PubMed  Google Scholar 

  25. Hinotsu A, Niimi M, Akaza H, et al. Development of Japanese version of QOL questionnaire for bladder and prostate cancer patients using FACT-Bl and P: Pilot study. Gan To Kagaku Ryoho 1999; 26: 657-666.

    PubMed  Google Scholar 

  26. Fayers PM, Curran D, Machin D. Incomplete quality of life data in randomized trials: Missing items. Stat Med 1998; 17: 679-696.

    PubMed  Google Scholar 

  27. Fairclough DL, Cella DF. Functional assessment of cancer therapy (FACT-G): Non-response to individual questions. Qual Life Res 1996; 5: 321-329.

    PubMed  Google Scholar 

  28. The ASCF group. Analysis of sexual behaviour in France (ACSF). A comparison between two modes of investigation: Telephone survey and face-to-face survey. ASCF principal investigators and their associates. Aids 1992; 6: 315-323.

    Google Scholar 

  29. Eaker S, Bergstrom R, Bergstrom A, Adami HO, Nyren O. Response rate to mailed epidemiologic questionnaires: A population-based randomized trial of variations in design and mailing routines. Am J Epidemiol 1998; 147: 74-82.

    PubMed  Google Scholar 

  30. Lund E, Gram IT. Response rate according to title and length of questionnaire. Scand J Soc Med 1998; 26: 154-160.

    PubMed  Google Scholar 

  31. Steineck G, Bergmark K, Henningsohn L, al-Abany M, Dickman PW, Helgason A. Symptom documentation in cancer survivors as a basis for therapy modifications. Acta Oncol 2002; 41: 244-252.

    PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. INSERM U 558/, Université Paul Sabatier (Toulouse III), France; Department of Epidemiology, National Institute of Public Health, Ministry of Health, Labour & Welfare, 2-3-6 Minami, Wako-shi, 351-0197 Saitama, Japan; Phone:

    Tomohiro Matsuda

  2. CIRUS–CERS, UMR 5193, Université le Mirail (Toulouse II), France

    Hélène Marche

  3. Registre des Cancers du Tarn, France

    Pascale Grosclaude

  4. CIRUS–CERS, UMR, 5193, Toulouse Cedex, France

    Serge Clement

Authors
  1. Tomohiro Matsuda
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Hélène Marche
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Pascale Grosclaude
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Serge Clement
    View author publications

    You can also search for this author in PubMed Google Scholar

Rights and permissions

Reprints and permissions

About this article

Cite this article

Matsuda, T., Marche, H., Grosclaude, P. et al. Participation Behavior of Bladder Cancer Survivors in a Medical Follow-Up Surveyon Quality of Life in France. Eur J Epidemiol 19, 313–321 (2004). https://doi.org/10.1023/B:EJEP.0000024703.54660.e5

Download citation

  • Issue Date:

  • DOI: https://doi.org/10.1023/B:EJEP.0000024703.54660.e5

Search

Navigation