Journal of Neuro-Oncology

, Volume 138, Issue 2, pp 407–415 | Cite as

Information needs and requirements in patients with brain tumours and their relatives

  • Christiane Reinert
  • Katharina Rathberger
  • Monika Klinkhammer-Schalke
  • Oliver Kölbl
  • Martin Proescholdt
  • Markus J. Riemenschneider
  • Gerhard Schuierer
  • Markus Hutterer
  • Michael Gerken
  • Peter Hau
Clinical Study


Patients with brain tumours face a number of medical and social challenges. Previous studies have shown that these patients and their relatives need a high level of patient-oriented information and counselling. However, these needs are often underestimated. In this single-centre cross-sectional study, we evaluated, for the first time, the information needs of patients with brain tumours and their relatives depending on diagnosis, age and level of education. The participants were interviewed using pre-specified questionnaires. Answers were evaluated descriptively using standard statistical methods. A total of 888 questionnaires were sent out. The return rate was 50.7%. The majority of patients (nP = 103; 59.9%) and a higher proportion of relatives (nR = 103; 72.5%; p = 0.019) wished to receive a maximum of information. The majority (79.7% of patients; 83.1% of relatives) also stated that they preferred a personal, face-to-face meeting as primary source of information. The need for information increased with education (p = 0.015), and decreased with tumour grade (p = 0.025) and age (p = 0.118). Our data indicate that patients with brain tumours and their relatives have high information needs throughout their disease and continuously require information and counselling. Optimal provision of information is based on personal preferences, which needs to be evaluated appropriately. Patient-oriented information and counselling are parts of a successful communication strategy that can improve cancer care significantly.


Brain tumour Information need Patient Relative Patient-oriented information 



Many thanks to all patients and their relatives who participated in the survey. The study was funded in part by Grant of the Wilhelm Sander-Stiftung, Munich, Germany 2009.800.1 und 2009.800.2.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

The study has been performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Research involving human and animal participants

This article does not contain any studies with animals performed by any of the authors.

Supplementary material

11060_2018_2811_MOESM1_ESM.docx (201 kb)
Online Resource 1: CONSORT diagram. Of the patients treated who were questioned (n = 444) and their relatives (n = 444), replies were received from 450 persons (50.7%). 35.4% (n = 314) agreed to participate in the study. (DOCX 200 KB)
11060_2018_2811_MOESM2_ESM.docx (96 kb)
Online Resource 2: Use of information channels Both patients and relatives usually received their information from the treating doctors. The internet also served as an important source of information (DOCX 96 KB)
11060_2018_2811_MOESM3_ESM.docx (97 kb)
Online Resource 3: Information topics. The focus in the search for information by both patients and relatives was on the medical treatments, especially surgery and radiotherapy and the medical tests necessary for diagnosis. (DOCX 96 KB)
11060_2018_2811_MOESM4_ESM.docx (97 kb)
Online Resource 4a: Information approach in patients depending on age. The general need for information and the wish to participate in treatment decisions in patients decline with age. Older patients tend to rely on the doctors’ decisions. There are no significant differences between the age-groups. (DOCX 97 KB)
11060_2018_2811_MOESM5_ESM.docx (98 kb)
Online Resource 4b: Information approach in patients depending on diagnosis. The general desire for information decreases significantly (p = 0.025) with increasing malignancy of the diagnosis. On the other hand, the preference for relying on the doctor’s decisions increases significantly (p = 0.016). (DOCX 97 KB)
11060_2018_2811_MOESM6_ESM.docx (97 kb)
Online Resource 4c: Information approach in patients depending education. The general desire to participate in treatment decisions increases with the level of education (p = 0.312). (DOCX 97 KB)
11060_2018_2811_MOESM7_ESM.docx (124 kb)
Online Resource 5a: Information requirements in patients depending on age. There are no significant differences. However, legal issues such as disability and reintegration at work are of interest chiefly to the under-fifties. (DOCX 124 KB)
11060_2018_2811_MOESM8_ESM.docx (124 kb)
Online Resource 5b: Information requirements in patients depending on diagnosis. With increasing malignancy of the diagnosis, patient´s information requirements with respect to medical treatment are high. (DOCX 123 KB)
11060_2018_2811_MOESM9_ESM.docx (137 kb)
Online Resource 5c: Information requirements in patients depending on education. Patients with a high level of education obtain information on all topic areas on their own initiative. Despite this high level of information, they have the highest information requirements, especially on issues like vocational reintegration, disability, and advance directives. (DOCX 136 KB)


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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Authors and Affiliations

  • Christiane Reinert
    • 1
  • Katharina Rathberger
    • 1
  • Monika Klinkhammer-Schalke
    • 2
  • Oliver Kölbl
    • 3
  • Martin Proescholdt
    • 4
  • Markus J. Riemenschneider
    • 5
  • Gerhard Schuierer
    • 6
  • Markus Hutterer
    • 1
    • 7
  • Michael Gerken
    • 2
  • Peter Hau
    • 1
  1. 1.Department of Neurology and Wilhelm Sander-Neuro-Oncology UnitUniversity of RegensburgRegensburgGermany
  2. 2.Institute for Quality Assurance and Health Services ResearchUniversity RegensburgRegensburgGermany
  3. 3.Department of Radiotherapy and Radiation OncologyUniversity Hospital RegensburgRegensburgGermany
  4. 4.Department of NeurosurgeryUniversity Hospital RegensburgRegensburgGermany
  5. 5.Department of NeuropathologyRegensburg University HospitalRegensburgGermany
  6. 6.Institute of NeuroradiologyUniversity of Regensburg and County HospitalRegensburgGermany
  7. 7.Department of Neurology 1, NeuroMed CampusKepler University Hospital LinzLinzAustria

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