Fear of disease progression in adult ambulatory patients with brain cancer: prevalence and clinical correlates



Fear of progression (FoP) is frequent in patients with cancer and of high clinical relevance. Despite the often devastating prognosis of brain cancer, FoP has not yet been assessed in neurooncological patients.


The aim of this study was thus the assessment of FoP and its clinical correlates.


In an ambulatory setting, 42 patients with a primary brain tumour completed the Fear of Progression questionnaire FoP-Q-12. Clinical correlates of FoP were assessed via a variety of measures, including patients’ physical state (Karnofsky Performance Status, KPS), cancer-related psychosocial distress (Distress Thermometer, DT), anxiety (General Anxiety Disorder Scale, GAD-7), depression (Patient Health Questionnaire, PHQ-9), Quality of Life (Short Form Health Survey, SF-8), and unmet supportive care needs (Supportive Care Needs Survey, SCNS).


Eighteen patients (42%) suffered from high FoP (i.e. scored ≥ 34 in the FoP-Q-12). According to the 12 items of the FoP-Q-12, the greatest fears were worrying about what would happen to their family and being afraid of severe medical treatments. No sociodemographic variables (e.g. age, gender) or medical tumour characteristics (e.g. tumour malignancy, first or recurrent tumour) were related to FoP. Patients with more severe physical symptoms reported higher FoP. Patients with higher FoP were more anxious, more depressed, reported lower Quality of Life, and suffered from more unmet supportive care needs.


Our results demonstrate that FoP is frequent and of high clinical relevance for neurooncological patients. Its assessment is not sufficiently covered by instruments for assessment of other areas of psychological morbidity (e.g. general anxiety). Moreover, FoP cannot be predicted by objective characteristics of the patients and disease. Thus, the routine screening for FoP is recommended in neurooncological patients. Clinicians should bear in mind that patients with high FoP are likely to suffer from high emotional distress and unmet supportive care needs and initiate treatment accordingly.

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The authors are grateful to Anja Mehnert for providing the SCNS and to Hannah Schmale for the valuable support during data collection.

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Correspondence to Simone Goebel.

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Goebel, S., Mehdorn, H.M. Fear of disease progression in adult ambulatory patients with brain cancer: prevalence and clinical correlates. Support Care Cancer 27, 3521–3529 (2019). https://doi.org/10.1007/s00520-019-04665-9

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  • Brain tumour
  • Fear of cancer progression
  • Cancer
  • Recurrence
  • Psychooncology
  • Neurooncology