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01.02.2016

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

verfasst von: 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

Erschienen in: Journal of Cancer Survivorship | Ausgabe 1/2016

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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.

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedPubMedCentralCrossRef

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

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedPubMedCentralCrossRef

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.PubMedPubMedCentralCrossRef

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.PubMedCrossRef

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.CrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedPubMedCentralCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedPubMedCentralCrossRef

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.PubMedPubMedCentralCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedPubMedCentral

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.PubMedCrossRef

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.PubMedPubMedCentralCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedPubMedCentralCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedPubMedCentralCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedPubMedCentralCrossRef

58.

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

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

Titel: Satisfaction with information and unmet information needs in men and women with cancer
verfasst von: 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
Publikationsdatum: 01.02.2016
Verlag: Springer US
Erschienen in: Journal of Cancer Survivorship / Ausgabe 1/2016
Print ISSN: 1932-2259
Elektronische ISSN: 1932-2267
DOI: https://doi.org/10.1007/s11764-015-0451-1

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Springer Medizin

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

Abstract

Purpose

Methods

Results

Conclusions

Implications for Cancer Survivors

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Live-Webinar: Aktuelle Leitlinien bei Herz-Kreislauf-Erkrankungen

Springer Medizin

Abstract

Purpose

Methods

Results

Conclusions

Implications for Cancer Survivors

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