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Original research
Glioma patient-reported outcomes: patients and clinicians
  1. Marthe Peeters1,
  2. Germaine Ottenheijm1,
  3. Paul Bienfait2,
  4. Daniëlle Eekers3,
  5. Anja Gijtenbeek4,
  6. Monique Hanse5,
  7. Johan Koekkoek1,6,
  8. Leonie van Leeuwen7,
  9. Cees Tijssen8,
  10. Linda Dirven1,6 and
  11. Martin Taphoorn1,6
  1. 1 Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands
  2. 2 Department of Neurology, Gelre Ziekenhuizen Apeldoorn, Apeldoorn, The Netherlands
  3. 3 Department of Radiation Oncology (Maastro), Maastricht University Medical Centre+, Maastricht, The Netherlands
  4. 4 Department of Neurology, Radboudumc, Nijmegen, The Netherlands
  5. 5 Department of Neurology, Catharina Hospital, Eindhoven, The Netherlands
  6. 6 Department of Neurology, Medisch Centrum Haaglanden, Den Haag, The Netherlands
  7. 7 Department of Neurology and Neurosurgery, UMC Utrecht, Utrecht, The Netherlands
  8. 8 Department of Neurology, Elisabeth-TweeSteden Ziekenhuis, Tilburg, The Netherlands
  1. Correspondence to Marthe Peeters, LUMC, Leiden 2300 RC, The Netherlands; m.c.m.peeters{at}lumc.nl

Abstract

Introduction Routine assessment of patient-reported outcomes (PROs) in oncology has shown to improve the quality of the delivered care and to prolong survival. However, for successful implementation of routine assessment of PROs, more knowledge on their usability in clinical practice is needed.

Objective This study aimed to cross-sectionally assess the perspective of patients and clinicians on the practicality of routinely measuring PROs in clinical practice for glioma patients.

Methods Semistructured interviews were conducted evaluating the role of healthcare professionals (HCP) in discussing results of PRO measures (PROMs), and the preferred topics, methods and frequency of PRO assessment. Glioma patients, their proxies and HCPs involved in the treatment of glioma patients from eight centres in the Netherlands were included.

Results Twenty-four patients, 16 proxies and 35 HCPs were interviewed. The majority of patients, proxies and HCPs (92%, 81% and 80%, respectively) were willing to discuss PRO results during consultations. Although HCPs prefer that results are discussed with the nurse specialist, only one-third of patients/proxies agreed. Functioning of daily life was considered important in all three groups. Most participants indicated that discussion of PROM results should take place during standard follow-up visits, and completed at home about 1 week in advance. On group level, there was no preference for administration of questionnaires on paper or digitally. Lastly, all centres had staff available to send questionnaires on paper.

Conclusion This study shows that routine assessment of PROs is desired by patients, proxies and HCP’s in neuro-oncological care in Dutch hospitals.

  • brain
  • quality of life
  • symptoms and symptom management
  • hospital care

Data availability statement

The data that support the findings of this study are available from the corresponding author, MCMP, https://orcid.org/0000-0003-3031-9891, on reasonable request.

https://doi.org/10.1136/bmjspcare-2020-002699

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    Data availability statement

    The data that support the findings of this study are available from the corresponding author, MCMP, https://orcid.org/0000-0003-3031-9891, on reasonable request.

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    Footnotes

    • Twitter @LeonievLeeuwen

    • MP and GO contributed equally.

    • Contributors Conception and design of study: GO, LvL, MT. Data collection: GO, MP, PB, DE, AG, MH, JK, LvL, CT, LD and MT. Analysis and/or interpretation of data: GO, MP, LD. Drafting the manuscript: GO, MP, LD. Review and revision of manuscript: MP, GO, PB, DE, AG, MH, JK, LvL, CT, LD and MT. Approval of the version of the manuscript to be published: MP GO, PB, DE, AG, MH, JK, LvL, CT, LD and MT.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.