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Glioblastoma multiforme from diagnosis to death: a prospective, hospital-based, cohort, pilot feasibility study of patient reported symptoms and needs

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Abstract

Purpose

Glioblastoma (GBM) patients have many palliative care (PC) issues. To date, there are no studies examining the prospective usage of validated PC assessment tools as patient reported outcome measures for GBM patients.

Methods

GBM patients’ PC issues were assessed from diagnosis to death or for at least 12 months every 7 weeks (±8 days) using semi-structured interviews and the Hospice and Palliative Care Evaluation (HOPE, including Eastern Cooperative Oncology Group (ECOG) performance status, 17 items) and the Palliative Outcome Scale (POS, 11 items). Data from patients who died within 12 months of the last patient’s enrollment were evaluated using summarizing content analysis, visual graphical analysis (VGA), and linear mixed models for repeated measures.

Results

Nineteen of 33 patients screened were enrolled; two dropped out and four were still alive at the end of the study. The remaining 13 were assessed at 59 points until death (time range 4–68 weeks; 1–10 contacts per patient; assessment: self, 33; joint, 8; external, 18). VGA of the HOPE and POS data, including all 1,652 assessed item data, showed consistent trajectory profiles for 14 of 28 items: 10 were increasing (meaning symptom worsening) and comprised predominantly psychosocial issues and care dependency. Type of assessment partly interacted with time, however, not qualitatively so. Analysis of semi-structured interviews revealed delayed interactions with PC/hospice services and numerous neuropsychiatric problems not detected by HOPE and POS.

Conclusions

Prospective self-assessment of GBM patients’ PC issues is feasible. However, disease progression may necessitate further, external assessment. Modification of existing PC assessment tools is needed to detect GBM-specific issues.

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Notes

  1. The term “caregiver” is most widely used to refer to non-professionals assisting in the care of persons receiving palliative care. For our purposes here, this refers to relatives of the GBM patients caring for them, also sometimes called family caregivers.

Abbreviations

HOPE:

Hospiz- und Palliativerhebung (Hospice and Palliative Care Evaluation)

HOPE-SP-CL:

HOPE symptom and problem checklist

POS:

Palliative Outcome Scale

ECOG:

Eastern Cooperative Oncology Group

PROM:

Patient-reported outcome measure

PC:

Palliative care

GBM:

Glioblastoma

ADLs:

Activities of daily living

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Acknowledgments

We would like to thank all of the study participants and their caregivers as well as the physicians involved for contacting patients.

Funding

The Center for Clinical Trials, University Hospital, Cologne, Germany, receives support for clinical studies from the Federal Ministry of Education and Research (BMBF01KN0706).

Conflict of interest

The authors declare that there is no conflict of interest. All authors have full control of all primary data and allow the journal to review the data if requested.

Author information

Authors and Affiliations

  1. Department of Palliative Medicine, University Hospital of Cologne, Kerpener-Strasse 62, 50924, Cologne, Germany

    Heidrun Golla, Maryam Ale Ahmad, Maren Galushko & Raymond Voltz

  2. Center of Neurosurgery, University Hospital of Cologne, 50924, Cologne, Germany

    Jürgen Hampl

  3. Department of Stereotaxy and Functional Neurosurgery, Cologne’s Clinics, Hospital of Merheim, University of Witten/Herdecke, 51109, Cologne, Germany

    Mohammad Maarouf

  4. Department of Stereotactic and Functional Neurosurgery, University Hospital of Cologne, 50924, Cologne, Germany

    Mohammad Maarouf

  5. Department of Neurology, University Hospital of Cologne, 50924, Cologne, Germany

    Michael Schroeter

  6. Division of Clinical Neurooncology, Department of Neurology, University Hospital of Bonn, 53127, Bonn, Germany

    Ulrich Herrlinger

  7. Institute of Medical Statistics, Informatics and Epidemiology (IMSIE), University of Cologne, 50924, Cologne, Germany

    Martin Hellmich

  8. Center for Integrated Oncology, University Hospital of Cologne, 50924, Cologne, Germany

    Raymond Voltz

  9. Center for Integrated Oncology, University Hospital of Bonn, 53127, Bonn, Germany

    Raymond Voltz

  10. Center for Clinical Studies, University Hospital of Cologne, 50924, Cologne, Germany

    Raymond Voltz

Authors
  1. Heidrun Golla
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  2. Maryam Ale Ahmad
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  7. Ulrich Herrlinger
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  8. Martin Hellmich
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  9. Raymond Voltz
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Corresponding author

Correspondence to Heidrun Golla.

Additional information

Heidrun Golla and Maryam Ale Ahmad contributed equally to this work.

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Golla, H., Ale Ahmad, M., Galushko, M. et al. Glioblastoma multiforme from diagnosis to death: a prospective, hospital-based, cohort, pilot feasibility study of patient reported symptoms and needs. Support Care Cancer 22, 3341–3352 (2014). https://doi.org/10.1007/s00520-014-2384-z

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  • DOI: https://doi.org/10.1007/s00520-014-2384-z

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