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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. 1Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands
  2. 2Department of Neurology, Gelre Ziekenhuizen Apeldoorn, Apeldoorn, The Netherlands
  3. 3Department of Radiation Oncology (Maastro), Maastricht University Medical Centre+, Maastricht, The Netherlands
  4. 4Department of Neurology, Radboudumc, Nijmegen, The Netherlands
  5. 5Department of Neurology, Catharina Hospital, Eindhoven, The Netherlands
  6. 6Department of Neurology, Medisch Centrum Haaglanden, Den Haag, The Netherlands
  7. 7Department of Neurology and Neurosurgery, UMC Utrecht, Utrecht, The Netherlands
  8. 8Department 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

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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.

  • Patient consent for publication Not required.

  • Ethics approval The study was approved by the medical ethical review board of each participating centre.

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

  • 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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