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

Hermann Faller¹, Uwe Koch², Elmar Brähler^{3

4}, Martin Härter², Monika Keller⁵, Holger Schulz², Karl Wegscheider⁶, Joachim Weis⁷, Anna Boehncke⁷, Bianca Hund^{8

9}, Katrin Reuter⁹, Matthias Richard¹⁰, Susanne Sehner⁶, Carina Szalai^{3

11}, Hans-Ulrich Wittchen¹², Anja Mehnert^{2

3}

Affiliations

¹ Department of Medical Psychology and Psychotherapy, Medical Sociology and Rehabilitation Sciences, and Comprehensive Cancer Center Mainfranken, University of Würzburg, Klinikstrasse 3, 97070, Würzburg, Germany. h.faller@uni-wuerzburg.de.
² Department and Outpatient Clinic of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, 20246, Hamburg, Germany.
³ Department of Medical Psychology and Medical Sociology, Section of Psychosocial Oncology, University Medical Center Leipzig, Philipp-Rosenthal-Strasse 55, 04103, Leipzig, Germany.
⁴ Department of Psychosomatic Medicine and Psychotherapy, Universal Medical Center Mainz, Untere Zahlbacherstrasse 8, 55131, Mainz, Germany.
⁵ Division of Psychooncology, Department for Psychosomatic and General Clinical Medicine, University Hospital Heidelberg, Im Neuenheimer Feld 155, 69120, Heidelberg, Germany.
⁶ Department of Medical Biometry and Epidemiology, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, 20246, Hamburg, Germany.
⁷ Department of Psychooncology, Tumor Biology Center, University of Freiburg, Breisacher Strasse 117, 79106, Freiburg, Germany.
⁸ Rhein-Jura Klinik, Bad Säckingen, Germany.
⁹ Department of Psychiatry and Psychotherapy, University Medical Center Freiburg, Hauptstrasse 5, 79104, Freiburg, Germany.
¹⁰ Department of Medical Psychology and Psychotherapy, Medical Sociology and Rehabilitation Sciences, and Comprehensive Cancer Center Mainfranken, University of Würzburg, Klinikstrasse 3, 97070, Würzburg, Germany.
¹¹ Psychosocial Counselling Center for Cancer Patients, Schlobigplatz 23, 08056, Zwickau, Germany.
¹² Institute of Clinical Psychology and Psychotherapy and Center of Clinical Epidemiology and Longitudinal Studies (CELOS), Technical University Dresden, Chemnitzer Strasse 46, 01187, Dresden, Germany.

PMID: 25956402
DOI: 10.1007/s11764-015-0451-1

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

Hermann Faller et al. J Cancer Surviv. 2016 Feb.

. 2016 Feb;10(1):62-70.

doi: 10.1007/s11764-015-0451-1. Epub 2015 May 9.

Authors

Affiliations

¹ Department of Medical Psychology and Psychotherapy, Medical Sociology and Rehabilitation Sciences, and Comprehensive Cancer Center Mainfranken, University of Würzburg, Klinikstrasse 3, 97070, Würzburg, Germany. h.faller@uni-wuerzburg.de.
² Department and Outpatient Clinic of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, 20246, Hamburg, Germany.
³ Department of Medical Psychology and Medical Sociology, Section of Psychosocial Oncology, University Medical Center Leipzig, Philipp-Rosenthal-Strasse 55, 04103, Leipzig, Germany.
⁴ Department of Psychosomatic Medicine and Psychotherapy, Universal Medical Center Mainz, Untere Zahlbacherstrasse 8, 55131, Mainz, Germany.
⁵ Division of Psychooncology, Department for Psychosomatic and General Clinical Medicine, University Hospital Heidelberg, Im Neuenheimer Feld 155, 69120, Heidelberg, Germany.
⁶ Department of Medical Biometry and Epidemiology, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, 20246, Hamburg, Germany.
⁷ Department of Psychooncology, Tumor Biology Center, University of Freiburg, Breisacher Strasse 117, 79106, Freiburg, Germany.
⁸ Rhein-Jura Klinik, Bad Säckingen, Germany.
⁹ Department of Psychiatry and Psychotherapy, University Medical Center Freiburg, Hauptstrasse 5, 79104, Freiburg, Germany.
¹⁰ Department of Medical Psychology and Psychotherapy, Medical Sociology and Rehabilitation Sciences, and Comprehensive Cancer Center Mainfranken, University of Würzburg, Klinikstrasse 3, 97070, Würzburg, Germany.
¹¹ Psychosocial Counselling Center for Cancer Patients, Schlobigplatz 23, 08056, Zwickau, Germany.
¹² Institute of Clinical Psychology and Psychotherapy and Center of Clinical Epidemiology and Longitudinal Studies (CELOS), Technical University Dresden, Chemnitzer Strasse 46, 01187, Dresden, Germany.

PMID: 25956402
DOI: 10.1007/s11764-015-0451-1

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: Anxiety; Cancer; Depression; Information; Needs; Quality of life.

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

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

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