Faller Hermann, Koch Uwe, Brähler Elmar, Härter Martin, Keller Monika, Schulz Holger, Wegscheider Karl, Weis Joachim, Boehncke Anna, Hund Bianca, Reuter Katrin, Richard Matthias, Sehner Susanne, Szalai Carina, Wittchen Hans-Ulrich, Mehnert Anja
Department of Medical Psychology and Psychotherapy, Medical Sociology and Rehabilitation Sciences, and Comprehensive Cancer Center Mainfranken, University of Würzburg, Klinikstrasse 3, 97070, Würzburg, Germany.
Department and Outpatient Clinic of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, 20246, Hamburg, Germany.
J Cancer Surviv. 2016 Feb;10(1):62-70. doi: 10.1007/s11764-015-0451-1. Epub 2015 May 9.
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.
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).
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.
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.
Provision of information about psychosocial support seems important to increase utilization of support offers among distressed cancer survivors.
癌症患者的信息需求很高，但往往得不到满足。本研究旨在调查大量癌症患者样本中感知信息水平、信息满意度和未满足需求的情况。此外，我们还探讨了与情绪困扰和生活质量的关联，并考虑了性别因素。
在德国进行的一项多中心横断面研究中，对4020名癌症患者（平均年龄58岁，51%为女性）进行了评估。我们获取了关于信息水平、信息满意度和未满足需求的自我报告，使用患者健康问卷（PHQ - 9）测量抑郁症状，使用广泛性焦虑障碍量表（GAD - 7）测量焦虑症状，并使用欧洲癌症研究与治疗组织生活质量问卷核心30（EORTC QLQ - C30）测量与健康相关的生活质量。
72%至88%的参与者报告称在疾病的各个方面都得到了充分的信息，但心理支持方面除外（38%）。然而，36%至48%的患者也普遍存在未满足的信息需求。发现的性别差异通常较小。尽管男性觉得在心理支持方面得到的信息较少，但他们对该主题进一步信息的需求也较少。无论性别如何，对所获信息不太满意且有更多未满足需求的患者报告有更多焦虑、抑郁，生活质量更低。在被归类为最严重困扰的患者中，高达四分之三的人报告有未满足的心理支持信息需求。
在这项迄今为止最大规模的研究中，我们发现患者获得的信息和对信息的满意度都很高，但也存在大量未满足的需求，特别是在心理支持方面。
提供有关心理社会支持的信息对于增加困扰的癌症幸存者对支持服务的利用似乎很重要。
