Journal of Cancer Survivorship

, Volume 10, Issue 1, pp 62–70 | Cite as

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

  • Hermann Faller
  • Uwe Koch
  • Elmar Brähler
  • Martin Härter
  • Monika Keller
  • Holger Schulz
  • Karl Wegscheider
  • Joachim Weis
  • Anna Boehncke
  • Bianca Hund
  • Katrin Reuter
  • Matthias Richard
  • Susanne Sehner
  • Carina Szalai
  • Hans-Ulrich Wittchen
  • Anja Mehnert
Article

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.

Keywords

Cancer Information Needs Quality of life Anxiety Depression 

Notes

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.

References

  1. 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.PubMedCrossRefGoogle Scholar
  2. 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.PubMedCrossRefGoogle Scholar
  3. 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.PubMedCrossRefGoogle Scholar
  4. 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.PubMedCrossRefGoogle Scholar
  5. 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.PubMedCrossRefGoogle Scholar
  6. 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.PubMedCrossRefGoogle Scholar
  7. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  8. 8.
    Jones R, Pearson J, McGregor S, et al. Cross sectional survey of patients’ satisfaction with information about cancer. BMJ. 1999;319:1247–8.PubMedPubMedCentralCrossRefGoogle Scholar
  9. 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.PubMedCrossRefGoogle Scholar
  10. 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.PubMedCrossRefGoogle Scholar
  11. 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.PubMedCrossRefGoogle Scholar
  12. 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.PubMedCrossRefGoogle Scholar
  13. 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.PubMedCrossRefGoogle Scholar
  14. 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.PubMedCrossRefGoogle Scholar
  15. 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.PubMedCrossRefGoogle Scholar
  16. 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.PubMedCrossRefGoogle Scholar
  17. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  18. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  19. 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.PubMedCrossRefGoogle Scholar
  20. 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.CrossRefGoogle Scholar
  21. 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.PubMedCrossRefGoogle Scholar
  22. 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.PubMedCrossRefGoogle Scholar
  23. 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.PubMedCrossRefGoogle Scholar
  24. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  25. 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.PubMedCrossRefGoogle Scholar
  26. 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.PubMedCrossRefGoogle Scholar
  27. 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.PubMedCrossRefGoogle Scholar
  28. 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.PubMedCrossRefGoogle Scholar
  29. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  30. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  31. 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.PubMedCrossRefGoogle Scholar
  32. 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.PubMedCrossRefGoogle Scholar
  33. 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.PubMedCrossRefGoogle Scholar
  34. 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.PubMedCrossRefGoogle Scholar
  35. 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.PubMedCrossRefGoogle Scholar
  36. 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.PubMedCrossRefGoogle Scholar
  37. 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.PubMedCrossRefGoogle Scholar
  38. 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.PubMedCrossRefGoogle Scholar
  39. 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.PubMedPubMedCentralGoogle Scholar
  40. 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.PubMedCrossRefGoogle Scholar
  41. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  42. 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.PubMedCrossRefGoogle Scholar
  43. 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.PubMedCrossRefGoogle Scholar
  44. 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.PubMedCrossRefGoogle Scholar
  45. 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.PubMedCrossRefGoogle Scholar
  46. 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.PubMedCrossRefGoogle Scholar
  47. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  48. 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.PubMedCrossRefGoogle Scholar
  49. 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.PubMedCrossRefGoogle Scholar
  50. 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.PubMedCrossRefGoogle Scholar
  51. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  52. 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.PubMedCrossRefGoogle Scholar
  53. 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.PubMedCrossRefGoogle Scholar
  54. 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.PubMedCrossRefGoogle Scholar
  55. 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.PubMedCrossRefGoogle Scholar
  56. 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.PubMedCrossRefGoogle Scholar
  57. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  58. 58.
    Mills ME, Davidson R. Cancer patients’ sources of information: use and quality issues. Psychooncology. 2002;11:371–8.PubMedCrossRefGoogle Scholar
  59. 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.PubMedCrossRefGoogle Scholar
  60. 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.PubMedCrossRefGoogle Scholar
  61. 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.PubMedCrossRefGoogle Scholar
  62. 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.PubMedCrossRefGoogle Scholar
  63. 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.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2015

Authors and Affiliations

  • Hermann Faller
    • 1
  • Uwe Koch
    • 2
  • Elmar Brähler
    • 3
    • 4
  • Martin Härter
    • 2
  • Monika Keller
    • 5
  • Holger Schulz
    • 2
  • Karl Wegscheider
    • 6
  • Joachim Weis
    • 7
  • Anna Boehncke
    • 7
  • Bianca Hund
    • 8
    • 9
  • Katrin Reuter
    • 9
  • Matthias Richard
    • 1
  • Susanne Sehner
    • 6
  • Carina Szalai
    • 3
    • 10
  • Hans-Ulrich Wittchen
    • 11
  • Anja Mehnert
    • 2
    • 3
  1. 1.Department of Medical Psychology and Psychotherapy, Medical Sociology and Rehabilitation Sciences, and Comprehensive Cancer Center MainfrankenUniversity of WürzburgWürzburgGermany
  2. 2.Department and Outpatient Clinic of Medical PsychologyUniversity Medical Center Hamburg-EppendorfHamburgGermany
  3. 3.Department of Medical Psychology and Medical Sociology, Section of Psychosocial OncologyUniversity Medical Center LeipzigLeipzigGermany
  4. 4.Department of Psychosomatic Medicine and PsychotherapyUniversal Medical Center MainzMainzGermany
  5. 5.Division of Psychooncology, Department for Psychosomatic and General Clinical MedicineUniversity Hospital HeidelbergHeidelbergGermany
  6. 6.Department of Medical Biometry and EpidemiologyUniversity Medical Center Hamburg-EppendorfHamburgGermany
  7. 7.Department of Psychooncology, Tumor Biology CenterUniversity of FreiburgFreiburgGermany
  8. 8.Rhein-Jura KlinikBad SäckingenGermany
  9. 9.Department of Psychiatry and PsychotherapyUniversity Medical Center FreiburgFreiburgGermany
  10. 10.Psychosocial Counselling Center for Cancer PatientsZwickauGermany
  11. 11.Institute of Clinical Psychology and Psychotherapy and Center of Clinical Epidemiology and Longitudinal Studies (CELOS)Technical University DresdenDresdenGermany

Personalised recommendations