Advertisement

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

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.

Keywords

Brain tumour Information need Patient Relative Patient-oriented information 

Notes

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.

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)

References

  1. 1.
  2. 2.
    Manfredi C, Czaja R, Buis M, Derk D (1993) Patient use of treatment-related information received from the Cancer information service. Cancer 71:1326–1337CrossRefPubMedGoogle Scholar
  3. 3.
    Fallowfield L, Ford S, Lewis S (1995) No news is not good news: information preferences of patients with cancer. Psychooncology 4:197–202CrossRefPubMedGoogle Scholar
  4. 4.
    Meredith C, Symonds P, Webster L, Lamont D, Pyper E, Gillis CR, Fallowfield L (1996) Information needs of cancer patients in west Scotland: cross sectional survey of patients’ views. BMJ 313:724–726CrossRefPubMedPubMedCentralGoogle Scholar
  5. 5.
    Dierks M-L, Schwartz F-W, Walter U (2000) Patienten als Kunden. Informationsbedarf und Qualität von Patienteninformationen aus Sicht der Public Health-Forschung. In: Jazbinsek D (ed) Gesundheitskommunikation. Westdeutscher Verlag, Wiesbaden, pp 150–163CrossRefGoogle Scholar
  6. 6.
    Harms F, Gänshirt D, Ahlert B (2009) Informationsbedürfnis von krebspatienten. Monit Versorg Forsch 04:32–36Google Scholar
  7. 7.
    Spatz ES, Krumholz HM, Moulton BW (2017) Prime time for shared decision making. JAMA 317:1309–1310CrossRefPubMedGoogle Scholar
  8. 8.
    Spatz ES, Krumholz HM, Moulton BW (2016) The new era of informed consent: getting to a reasonable-patient standard through shared decision making. JAMA 315:2063–2064CrossRefPubMedPubMedCentralGoogle Scholar
  9. 9.
    Oshima Lee E, Emanuel EJ (2013) Shared decision making to improve care and reduce costs. N Engl J Med 368:6–8CrossRefPubMedGoogle Scholar
  10. 10.
    Stacey D, Legare F, Col NF, Bennett CL, Barry MJ, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Thomson R, Trevena L, Wu JH (2014) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev.  https://doi.org/10.1002/14651858.CD001431.pub4 Google Scholar
  11. 11.
    Hoffmann TC, Montori VM, Del Mar C (2014) The connection between evidence-based medicine and shared decision making. JAMA 312:1295–1296CrossRefPubMedGoogle Scholar
  12. 12.
    Brown R, Butow P, Wilson-Genderson M, Bernhard J, Ribi K, Juraskova I (2012) Meeting the decision-making preferences of patients with breast cancer in oncology consultations: impact on decision-related outcomes. J Clin Oncol 30:857–862CrossRefPubMedGoogle Scholar
  13. 13.
    Stacey D, Samant R, Bennett C (2008) Decision making in oncology: a review of patient decision aids to support patient participation. CA Cancer J Clin 58:293–304CrossRefPubMedGoogle Scholar
  14. 14.
    Vogel B, Helmes A, Bengel J (2006) Arzt-Patienten-Kommunikation in der Tumorbehandlung: Erwartungen und Erfahrungen aus Patientensicht. Z Med Psychol 15:149–161Google Scholar
  15. 15.
    Feldman-Stewart D, Brennenstuhl S, Brundage MD (2007) A purpose-based evaluation of information for patients: an approach to measuring effectiveness. Patient Educ Couns 65:311–319CrossRefPubMedGoogle Scholar
  16. 16.
    Wiesing U, Tumorzentrum S (2008) Die Aufklärung von Tumorpatienten: Informationen und Empfehlungen für das betreuende Team. Südwestdt. TumorzentrumGoogle Scholar
  17. 17.
  18. 18.
    Heimer A, Henkel M (2012) Bedarf an Krebsinformationen in der Bevölkerung. Analyse des Informationsverhaltens von Ratsuchenden Akademische Verlagsgesellschaft AKA, HeidelbergGoogle Scholar
  19. 19.
    Rutten LJ, Arora NK, Bakos AD, Aziz N, Rowland J (2005) Information needs and sources of information among cancer patients: a systematic review of research (1980–2003). Patient Educ Couns 57:250–261CrossRefPubMedGoogle Scholar
  20. 20.
    Schumacher A, Volkenandt M, Koch OM (1998) Zur ärztlichen aufklärung von patienten mit bösartigen erkrankungen. Dtsch med Wochenschr 123:573–576CrossRefPubMedGoogle Scholar
  21. 21.
    Jenkins V, Fallowfield L, Saul J (2001) Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer 84:48–51CrossRefGoogle Scholar
  22. 22.
    Vogel BA, Bengel J, Helmes AW (2008) Information and decision making: patients’ needs and experiences in the course of breast cancer treatment. Patient Educ Couns 71:79–85CrossRefPubMedGoogle Scholar
  23. 23.
    Schmidt A, Kowalski C, Wesselmann S, Pfaff H, Ernstmann N (2015) Informationsbedürfnisse und Informationsprozesse aus Sicht von Brustkrebspatientinnen im Krankheitsverlauf. Gesundheitswesen 77:A347Google Scholar
  24. 24.
    Cassileth BR, Zupkis RV, Sutton-Smith K, March V (1980) Information and participation preferences among cancer patients. Ann of Intern Med 92:832–836CrossRefGoogle Scholar
  25. 25.
    Eakin EG, Strycker LA (2001) Awareness and barriers to use of cancer support and information resources by HMO patients with breast, prostate, or colon cancer: patient and provider perspectives. Psycho-oncology 10:103–113CrossRefPubMedGoogle Scholar
  26. 26.
    Heimer A, Henkel M (2012) Bedarf an Krebsinformation in der Bevölkerung. Analyse des Informationsverhaltens von Ratsuchenden. Akademische Verlagsgesellschaft AKA GmbH, HeidelbergGoogle Scholar
  27. 27.
    German F (2012) Ministry of Health: National cancer plan - action fields, goals and recommandations for implementation. https://www.tumorzentren.de/Nationaler Krebsplan.html
  28. 28.
    Gänshirt D, Harms F (2008) Direct patient information. Satus Quo 2008. Monitor Versorg Forsch 03:35–39Google Scholar
  29. 29.
    Zillmann B (2016) Kommunikation in der Krebstherapie. Deutschlandfunk Kultur Beitrag, http://www.deutschlandfunkkultur.de/kommunikation-in-der-krebstherapie-chemo-ohne-zuwendung.976.de.html?dram:article_id=348366
  30. 30.
    Cavers D, Hacking B, Erridge SC, Morris PG, Kendall M, Murray SA (2013) Adjustment and support needs of glioma patients and their relatives: serial interviews. Psycho-oncology 22:1299–1305CrossRefPubMedGoogle Scholar
  31. 31.
    Schönberger C, Kardoff E (2002) Angehörige Krebskranker in der Rehabilitation. In: Rehabilitationswissenschaften, If (eds). Verband Deutscher Rentenversicherungsträger, BerlinGoogle Scholar
  32. 32.
    Arraras JI, Greimel E, Sezer O, Chie WC, Bergenmar M, Costantini A, Young T, Vlasic KK, Velikova G (2010) An international validation study of the EORTC QLQ-INFO25 questionnaire: an instrument to assess the information given to cancer patients. Eur J Cancer 46:2726–2738CrossRefPubMedGoogle Scholar
  33. 33.
    Bredart A, Beaudeau A, Young T, Moura De Alberquerque Melo H, Arraras JI, Friend L, Schmidt H, Tomaszewski KA, Bergenmar M, Anota A, Costantini A, Marchal F, Tomaszewska IM, Vassiliou V, Chie WC, Hureaux J, Conroy T, Ramage J, Bonnetain F, Kulis D, Aaronson NK (2017) The European organization for research and treatment of cancer - satisfaction with cancer care questionnaire: revision and extended application development. Psycho-oncology 26:400–404CrossRefPubMedGoogle Scholar

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

Personalised recommendations