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

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Abstract

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.

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Acknowledgements

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.

Author information

Authors and Affiliations

  1. Department of Neurology and Wilhelm Sander-Neuro-Oncology Unit, University of Regensburg, Universitätsstrasse 84, 93053, Regensburg, Germany

    Christiane Reinert, Katharina Rathberger, Markus Hutterer & Peter Hau

  2. Institute for Quality Assurance and Health Services Research, University Regensburg, Am Biopark 9, 93053, Regensburg, Germany

    Monika Klinkhammer-Schalke & Michael Gerken

  3. Department of Radiotherapy and Radiation Oncology, University Hospital Regensburg, Franz-Josef-Strauß-Allee 11, 93053, Regensburg, Germany

    Oliver Kölbl

  4. Department of Neurosurgery, University Hospital Regensburg, Franz-Josef-Strauß-Allee 11, 93053, Regensburg, Germany

    Martin Proescholdt

  5. Department of Neuropathology, Regensburg University Hospital, Franz-Josef-Strauß-Allee 11, 93053, Regensburg, Germany

    Markus J. Riemenschneider

  6. Institute of Neuroradiology, University of Regensburg and County Hospital, Universitätsstrasse 84, 93053, Regensburg, Germany

    Gerhard Schuierer

  7. Department of Neurology 1, NeuroMed Campus, Kepler University Hospital Linz, Wagner-Jauregg-Weg 15, 4020, Linz, Austria

    Markus Hutterer

Authors
  1. Christiane Reinert
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  2. Katharina Rathberger
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  3. Monika Klinkhammer-Schalke
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  4. Oliver Kölbl
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  7. Gerhard Schuierer
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  8. Markus Hutterer
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Corresponding author

Correspondence to Peter Hau.

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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.

Electronic supplementary material

Below is the link to the electronic supplementary material.

11060_2018_2811_MOESM1_ESM.docx

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

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

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

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

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

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

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

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

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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Reinert, C., Rathberger, K., Klinkhammer-Schalke, M. et al. Information needs and requirements in patients with brain tumours and their relatives. J Neurooncol 138, 407–415 (2018). https://doi.org/10.1007/s11060-018-2811-y

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