Skip to main content

Advertisement

Log in

Satisfaction with information and unmet information needs in men and women with cancer

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

Abstract

Purpose

Information needs in cancer patients are high but often not fulfilled. This study aimed to examine the level of perceived information, information satisfaction, and unmet needs in a large sample of cancer patients. Further, we explored associations with emotional distress and quality of life accounting for gender.

Methods

In a multicenter, cross-sectional study in Germany, 4020 cancer patients (mean age 58 years, 51 % women) were evaluated. We obtained self-reports of information level, information satisfaction, and unmet needs, measured depressive symptoms with the Patient Health Questionnaire (PHQ-9), symptoms of anxiety with the Generalized Anxiety Disorder Scale (GAD-7), and health-related quality of life with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30).

Results

Seventy-two to 88 % of participants reported to be well informed regarding various aspects of their disease, except of psychological support (38 %). However, unmet information needs were also prevalent in 36 to 48 %. Gender differences found were generally small. Although men felt less informed about psychological support, they expressed fewer needs for further information regarding this topic. Irrespective of gender, patients who were less satisfied with information received and had more unmet needs reported more anxiety, depression, and lower quality of life. Up to three quarters of those classified as most severely distressed reported unmet needs for information about psychological support.

Conclusions

In this largest study to date, we found high levels of both information received and satisfaction with information, but also considerable amounts of unmet needs, particularly regarding psychological support.

Implications for Cancer Survivors

Provision of information about psychosocial support seems important to increase utilization of support offers among distressed cancer survivors.

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

Access this article

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

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3

Similar content being viewed by others

References

  1. O’Leary KA, Estabrooks CA, Olson K, et al. Information acquisition for women facing surgical treatment for breast cancer: influencing factors and selected outcomes. Patient Educ Couns. 2007;69:5–19.

    Article  PubMed  Google Scholar 

  2. Beckjord EB, Arora NK, McLaughlin W, et al. Health-related information needs in a large and diverse sample of adult cancer survivors: implications for cancer care. J Cancer Surviv. 2008;2:179–89.

    Article  PubMed  Google Scholar 

  3. Davies NJ, Kinman G, Thomas RJ, et al. Information satisfaction in breast and prostate cancer patients: implications for quality of life. Psychooncology. 2008;17:1048–52.

    Article  PubMed  Google Scholar 

  4. Gaston CM, Mitchell G. Information giving and decision-making in patients with advanced cancer: a systematic review. Soc Sci Med. 2005;61:2252–64.

    Article  PubMed  Google Scholar 

  5. Hagerty RG, Butow PN, Ellis PA, et al. Cancer patient preferences for communication of prognosis in the metastatic setting. J Clin Oncol. 2004;22:1721–30.

    Article  PubMed  Google Scholar 

  6. Halkett GK, Kristjanson LJ, Lobb E, et al. Information needs and preferences of women as they proceed through radiotherapy for breast cancer. Patient Educ Couns. 2012;86:396–404.

    Article  PubMed  Google Scholar 

  7. Jenkins V, Fallowfield L, Saul J. Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer. 2001;84:48–51.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  8. Jones R, Pearson J, McGregor S, et al. Cross sectional survey of patients’ satisfaction with information about cancer. BMJ. 1999;319:1247–8.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  9. Matsuyama RK, Kuhn LA, Molisani A, et al. Cancer patients’ information needs the first nine months after diagnosis. Patient Educ Couns. 2013;90:96–102.

    Article  PubMed  Google Scholar 

  10. McInnes DK, Cleary PD, Stein KD, et al. Perceptions of cancer-related information among cancer survivors: a report from the American Cancer Society’s studies of cancer survivors. Cancer. 2008;113:1471–9.

    Article  PubMed  Google Scholar 

  11. Collins ED, Moore CP, Clay KF, et al. Can women with early-stage breast cancer make an informed decision for mastectomy? J Clin Oncol. 2009;27:519–25.

    Article  PubMed  Google Scholar 

  12. Husson O, Thong MS, Mols F, et al. Illness perceptions in cancer survivors: what is the role of information provision? Psychooncology. 2013;22:490–8.

    Article  PubMed  Google Scholar 

  13. Goldfarb M, Casillas J. Unmet information and support needs in newly diagnosed thyroid cancer: comparison of adolescents/young adults (AYA) and older patients. J Cancer Surviv. 2014;8:394–401.

    Article  PubMed  Google Scholar 

  14. Fiszer C, Dolbeault S, Sultan S, et al. Prevalence, intensity, and predictors of the supportive care needs of women diagnosed with breast cancer: a systematic review. Psychooncology. 2014;23:361–74.

    Article  PubMed  Google Scholar 

  15. Harrison JD, Young JM, Price MA, et al. What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer. 2009;17:1117–28.

    Article  PubMed  Google Scholar 

  16. Husson O, Mols F, Oranje WA, et al. Unmet information needs and impact of cancer in (long-term) thyroid cancer survivors: results of the profiles registry. Psychooncology. 2014;23:946–52.

    Article  PubMed  CAS  Google Scholar 

  17. Kent EE, Arora NK, Rowland JH, et al. Health information needs and health-related quality of life in a diverse population of long-term cancer survivors. Patient Educ Couns. 2012;89:345–52.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Oerlemans S, Husson O, Mols F, et al. Perceived information provision and satisfaction among lymphoma and multiple myeloma survivors—results from a Dutch population-based study. Ann Hematol. 2012;91:1587–95.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Puts MT, Papoutsis A, Springall E, et al. A systematic review of unmet needs of newly diagnosed older cancer patients undergoing active cancer treatment. Support Care Cancer. 2012;20:1377–94.

    Article  PubMed  CAS  Google Scholar 

  20. von Heymann-Horan AB, Dalton SO, Dziekanska A, et al. Unmet needs of women with breast cancer during and after primary treatment: a prospective study in Denmark. Acta Oncol. 2013;52:382–90.

    Article  Google Scholar 

  21. Elkin EB, Kim SH, Casper ES, et al. Desire for information and involvement in treatment decisions: elderly cancer patients’ preferences and their physicians’ perceptions. J Clin Oncol. 2007;25:5275–80.

    Article  PubMed  Google Scholar 

  22. Matsuyama RK, Wilson-Genderson M, et al. Education level, not health literacy, associated with information needs for patients with cancer. Patient Educ Couns. 2011;85:e229–36.

    Article  PubMed  Google Scholar 

  23. Lindop E, Cannon S, et al. Evaluating the self-assessed support needs of women with breast cancer. J Adv Nurs. 2001;34:760–71.

    Article  PubMed  CAS  Google Scholar 

  24. Husson O, Mols F, van de Poll-Franse LV. The relation between information provision and health-related quality of life, anxiety and depression among cancer survivors: a systematic review. Ann Oncol. 2011;22:761–72.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  25. Husson O, Oerlemans S, Mols F, et al. Satisfaction with information provision is associated with baseline but not with follow-up quality of life among lymphoma patients: results from the Profiles registry. Acta Oncol. 2014;53:917–26.

    Article  PubMed  CAS  Google Scholar 

  26. Kerr J, Engel J, Schlesinger-Raab A, et al. Communication, quality of life and age: results of a 5-year prospective study in breast cancer patients. Ann Oncol. 2003;14:421–7.

    Article  PubMed  CAS  Google Scholar 

  27. Llewellyn CD, McGurk M, Weinman J. How satisfied are head and neck cancer (hnc) patients with the information they receive pre-treatment? Results from the Satisfaction with Cancer Information Profile (SCIP). Oral Oncol. 2006;42:726–34.

    Article  PubMed  CAS  Google Scholar 

  28. Vogel BA, Leonhart R, Helmes AW. Communication matters: the impact of communication and participation in decision making on breast cancer patients’ depression and quality of life. Patient Educ Couns. 2009;77:391–7.

    Article  PubMed  Google Scholar 

  29. Mehnert A, Koch U, Schulz H, et al. Prevalence of mental disorders, psychosocial distress and need for psychosocial support in cancer patients—study protocol of an epidemiological multi-center study. BMC Psychiatry. 2012;12:70.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Spitzer RL, Kroenke K, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001;16:606–13.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Mehnert A, Brähler E, Faller H, et al. Four-week prevalence of mental disorders in cancer patients across major tumor entities. J Clin Oncol. 2014;32:3540–6.

    Article  PubMed  Google Scholar 

  32. Löwe B, Gräfe K, Zipfel S, et al. Diagnosing ICD-10 depressive episodes: superior criterion validity of the Patient Health Questionnaire. Psychother Psychosom. 2004;73:386–90.

    Article  PubMed  Google Scholar 

  33. Löwe B, Spitzer RL, Gräfe K, et al. Comparative validity of three screening questionnaires for DSM-IV depressive disorders and physicians’ diagnoses. J Affect Disord. 2004;78:131–40.

    Article  PubMed  Google Scholar 

  34. Spitzer RL, Kroenke K, Williams JB, et al. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006;166:1092–7.

    Article  PubMed  Google Scholar 

  35. Löwe B, Decker O, Müller S, et al. Validation and standardization of the generalized anxiety disorder screener (GAD-7) in the general population. Med Care. 2008;46:266–74.

    Article  PubMed  Google Scholar 

  36. Aaronson NK, Ahmedzai S, Bergman B, et al. 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. 1993;85:365–76.

    Article  PubMed  CAS  Google Scholar 

  37. Mehnert A, Koch U. Psychological comorbidity and health-related quality of life and its association with awareness, utilization, and need for psychosocial support in a cancer register-based sample of long-term breast cancer survivors. J Psychosom Res. 2008;64:383–91.

    Article  PubMed  Google Scholar 

  38. Squiers L, Finney Rutten LJ, et al. Cancer patients’ information needs across the cancer care continuum: evidence from the cancer information service. J Health Commun. 2005;10 Suppl 1:15–34.

    Article  PubMed  Google Scholar 

  39. Carlson LE, Angen M, Cullum J, et al. High levels of untreated distress and fatigue in cancer patients. Br J Cancer. 2004;90:2297–304.

    PubMed  PubMed Central  CAS  Google Scholar 

  40. Jacobi F, Wittchen HU, Holting C, et al. Prevalence, co-morbidity and correlates of mental disorders in the general population: results from the German Health interview and examination Survey (GHS). Psychol Med. 2004;34:597–611.

    Article  PubMed  CAS  Google Scholar 

  41. Kessler RC, Chiu WT, Demler O, et al. Prevalence, severity, and comorbidity of 12-month DSM-IV disorders in the national comorbidity survey replication. Arch Gen Psychiatry. 2005;62:617–27.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Singer S, Das-Munshi J, Brähler E. Prevalence of mental health conditions in cancer patients in acute care—a meta-analysis. Ann Oncol. 2010;21:925–30.

    Article  PubMed  CAS  Google Scholar 

  43. Sheridan SL, Halpern DJ, Viera AJ, et al. Interventions for individuals with low health literacy: a systematic review. J Health Commun. 2011;16 Suppl 3:30–54.

    Article  PubMed  Google Scholar 

  44. Vogel BA, Bengel J, Helmes AW. Information and decision making: patients’ needs and experiences in the course of breast cancer treatment. Patient Educ Couns. 2008;71:79–85.

    Article  PubMed  Google Scholar 

  45. Barth J, Lannen P. Efficacy of communication skills training courses in oncology: a systematic review and meta-analysis. Ann Oncol. 2011;22:1030–40.

    Article  PubMed  CAS  Google Scholar 

  46. Trudel JG, Leduc N, Dumont S. Perceived communication between physicians and breast cancer patients as a predicting factor of patients’ health-related quality of life: a longitudinal analysis. Psychooncology. 2014;23:531–8.

    Article  PubMed  Google Scholar 

  47. Kinnersley P, Edwards A, Hood K, et al. Interventions before consultations to help patients address their information needs by encouraging question asking: systematic review. BMJ. 2008;337:a485.

    Article  PubMed  PubMed Central  Google Scholar 

  48. Spiegle G, Al-Sukhni E, Schmocker S, et al. Patient decision aids for cancer treatment: are there any alternatives? Cancer. 2013;119:189–200.

    Article  PubMed  Google Scholar 

  49. Stacey D, Samant R, Bennett C. Decision making in oncology: a review of patient decision aids to support patient participation. CA Cancer J Clin. 2008;58:293–304.

    Article  PubMed  Google Scholar 

  50. Gabrijel S, Grize L, Helfenstein E, et al. Receiving the diagnosis of lung cancer: patient recall of information and satisfaction with physician communication. J Clin Oncol. 2008;26:297–302.

    Article  PubMed  Google Scholar 

  51. Eggly S, Penner LA, Hagiwara N, et al. Patient, companion, and oncologist agreement regarding information discussed during triadic oncology clinical interactions. Psychooncology. 2013;22:637–45.

    Article  PubMed  PubMed Central  Google Scholar 

  52. van der Meulen N, Jansen J, van Dulmen S, et al. Interventions to improve recall of medical information in cancer patients: a systematic review of the literature. Psychooncology. 2008;17:857–68.

    Article  PubMed  Google Scholar 

  53. Ezendam NP, Nicolaije KA, Kruitwagen RF, et al. Survivorship Care Plans to inform the primary physician: results from the ROGY care pragmatic cluster randomized controlled trial. J Cancer Surviv. 2014;8:595–602.

    Article  PubMed  Google Scholar 

  54. Smith SL, Singh-Carlson S, Downie L, et al. Survivors of breast cancer: patient perspectives in survivorship care planning. J Cancer Surviv. 2011;5:337–44.

    Article  PubMed  Google Scholar 

  55. El-Jawahri A, Traeger L, Park ER, et al. Associations among prognostic understanding, quality of life, and mood in patients with advanced cancer. Cancer. 2014;120:278–85.

    Article  PubMed  Google Scholar 

  56. Quirt CF, Mackillop WJ, Ginsburg AD, et al. Do doctors know when their patients don’t? A survey of doctor-patient communication in lung cancer. Lung Cancer. 1997;18:1–20.

    Article  PubMed  CAS  Google Scholar 

  57. Weeks JC, Catalano PJ, Cronin A, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012;367:1616–25.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  58. Mills ME, Davidson R. Cancer patients’ sources of information: use and quality issues. Psychooncology. 2002;11:371–8.

    Article  PubMed  Google Scholar 

  59. Neumann M, Wirtz M, Ernstmann N, et al. Identifying and predicting subgroups of information needs among cancer patients: an initial study using latent class analysis. Support Care Cancer. 2011;19:1197–209.

    Article  PubMed  Google Scholar 

  60. Mack JW, Smith TJ. Reasons why physicians do not have discussions about poor prognosis, why it matters, and what can be improved. J Clin Oncol. 2012;30:2715–7.

    Article  PubMed  Google Scholar 

  61. Mulcare H, Kashima Y, Milgrom J, et al. Avoidant adjustment predicts lower information seeking in people with lung cancer. Psychooncology. 2013;22:540–7.

    Article  PubMed  Google Scholar 

  62. Mulcare H, Schofield P, Kashima Y, et al. Adjustment to cancer and the information needs of people with lung cancer. Psychooncology. 2011;20:488–96.

    Article  PubMed  CAS  Google Scholar 

  63. Arraras JI, Greimel E, Sezer O, et al. An international validation study of the EORTC QLQ-INFO25 questionnaire: an instrument to assess the information given to cancer patients. Eur J Cancer. 2010;46:2726–38.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

This study was funded by a grant from the German Cancer Aid (Grant No:107465) within the psychosocial oncology funding priority program. We thank all healthcare teams involved assisting in data collection in all local study centers.

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Hermann Faller.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Faller, H., Koch, U., Brähler, E. et al. Satisfaction with information and unmet information needs in men and women with cancer. J Cancer Surviv 10, 62–70 (2016). https://doi.org/10.1007/s11764-015-0451-1

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11764-015-0451-1

Keywords

Navigation