Skip to main content

Advertisement

SpringerLink
Log in

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

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Background

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.

Objective

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

Methods

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).

Results

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.

Conclusion

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. de Robles P, Fiest KM, Frolkis AD, Pringsheim T, Atta C, St. Germaine-Smith C, Day L, Lam D, Jette N (2015) The worldwide incidence and prevalence of primary brain tumors: a systematic review and meta-analysis. Neuro-Oncology 17:776–783. https://doi.org/10.1093/neuonc/nou283

    Article  PubMed  Google Scholar 

  2. Ownsworth T, Hawkes A, Steginga S, Walker D, Shum D (2009) A biopsychosocial perspective on adjustment and quality of life following brain tumor. Disabil Rehabil 31:1038–1055. https://doi.org/10.1080/09638280802509538

    Article  PubMed  Google Scholar 

  3. Ostrom QT, Gittleman H, Fulop J et al (2015) CBTRUS statistical report: primary brain and central nervous system tumors diagnosed in the United States in 2008-2012. Neuro-Oncology 17(Suppl 4):iv1–iv62. https://doi.org/10.1093/neuonc/nov189

    Article  PubMed  PubMed Central  Google Scholar 

  4. Chochinov HM (2001) Depression in cancer patients. Lancet Oncol 2:499–505. https://doi.org/10.1016/S1470-2045(01)00456-9

    Article  CAS  PubMed  Google Scholar 

  5. Huang J, Zeng C, Xiao J, Zhao D, Tang H, Wu H, Chen J (2017) Association between depression and brain tumor: a systematic review and meta-analysis. Oncotarget 8:94932–94943. https://doi.org/10.18632/oncotarget.19843

    Article  PubMed  PubMed Central  Google Scholar 

  6. Huang ME, Wartella J, Kreutzer J, Broaddus W, Lyckholm L (2001) Functional outcomes and quality of life in patients with brain tumours: a review of the literature. Brain Inj 15(10):843–856. https://doi.org/10.1080/02699050010013653

    Article  CAS  PubMed  Google Scholar 

  7. Goebel S, Stark AM, Kaup L, von Harscher M, Mehdorn HM (2011) Distress in patients with newly diagnosed brain tumours. Psycho-Oncology 20:623–630. https://doi.org/10.1002/pon.1958

    Article  CAS  PubMed  Google Scholar 

  8. Pace A, Metro G, Fabi A (2010) Supportive care in neurooncology. Curr Opin Oncol 22:621–626. https://doi.org/10.1097/CCO.0b013e32833e078c

    Article  PubMed  Google Scholar 

  9. Salander P (2010) Facilitating interventions and/or relationships in malignant brain tumors. Adv Ther 27:17–27. https://doi.org/10.1007/s12325-010-0003-z

    Article  PubMed  Google Scholar 

  10. Berg P, Book K, Dinkel A, Henrich G, Marten-Mittag B, Mertens D, Ossner C, Volmer S, Herschbach P (2011) Progredienzangst bei chronischen Erkrankungen. Psychother Psychosom Med Psychol 61:32–37. https://doi.org/10.1055/s-0030-1267927

    Article  PubMed  Google Scholar 

  11. Dankert A, Duran G, Engst-Hastreiter U et al (2003) Progredienzangst bei Patienten mit Tumorerkrankungen, Diabetes mellitus und entzündlich-rheumatischen Erkrankungen. Rehabilitation 42:155–163. https://doi.org/10.1055/s-2003-40094

    Article  CAS  PubMed  Google Scholar 

  12. Herschbach P, Dinkel A (2014) Fear of progression. In: Goerling U (ed) Psycho-Oncology. Springer, Berlin s.l, pp 11–29

    Chapter  Google Scholar 

  13. Herschbach P, Berg P, Dankert A, Duran G, Engst-Hastreiter U, Waadt S, Keller M, Ukat R, Henrich G (2005) Fear of progression in chronic diseases: psychometric properties of the Fear of Progression Questionnaire. J Psychosom Res 58:505–511. https://doi.org/10.1016/j.jpsychores.2005.02.007

    Article  Google Scholar 

  14. Simard S, Thewes B, Humphris G, Dixon M, Hayden C, Mireskandari S, Ozakinci G (2013) Fear of cancer recurrence in adult cancer survivors: a systematic review of quantitative studies. J Cancer Surviv 7:300–322. https://doi.org/10.1007/s11764-013-0272-z

    Article  PubMed  Google Scholar 

  15. Koch L, Jansen L, Brenner H, Arndt V (2013) Fear of recurrence and disease progression in long-term (≥ 5 years) cancer survivors- a systematic review of quantitative studies. Psycho-Oncology 22(1):1–11. https://doi.org/10.1002/pon.3022

    Article  CAS  PubMed  Google Scholar 

  16. Lebel S, Tomei C, Feldstain A, Beattie S, McCallum M (2013) Does fear of cancer recurrence predict cancer survivors' health care use? Support Care Cancer 21:901–906. https://doi.org/10.1007/s00520-012-1685-3

    Article  PubMed  Google Scholar 

  17. Mehnert A, Berg P, Henrich G, Herschbach P (2009) Fear of cancer progression and cancer-related intrusive cognitions in breast cancer survivors. Psycho-Oncology 18:1273–1280. https://doi.org/10.1002/pon.1481

    Article  PubMed  Google Scholar 

  18. Sarkar S, Scherwath A, Schirmer L, Schulz-Kindermann F, Neumann K, Kruse M, Dinkel A, Kunze S, Balck F, Kröger N, Koch U, Mehnert A (2014) Fear of recurrence and its impact on quality of life in patients with hematological cancers in the course of allogeneic hematopoietic SCT. Bone Marrow Transplant 49:1217–1222. https://doi.org/10.1038/bmt.2014.139

    Article  CAS  PubMed  Google Scholar 

  19. Mehnert A, Koch U, Sundermann C et al (2013) Predictors of fear of recurrence in patients one year after cancer rehabilitation: a prospective study. Acta Oncol (Stockholm, Sweden) 52:1102–1109. https://doi.org/10.3109/0284186X.2013.765063

    Article  Google Scholar 

  20. Hall DL, Luberto CM, Philpotts LL, Song R, Park ER, Yeh GY (2018) Mind-body interventions for fear of cancer recurrence: a systematic review and meta-analysis. Psycho-Oncology 27:2546–2558. https://doi.org/10.1002/pon.4757

    Article  PubMed  PubMed Central  Google Scholar 

  21. Berrett-Abebe J, Cadet T, Pirl W, Lennes I (2015) Exploring the relationship between fear of cancer recurrence and sleep quality in cancer survivors. J Psychosoc Oncol 33:297–309. https://doi.org/10.1080/07347332.2015.1020586

    Article  PubMed  Google Scholar 

  22. Sarkar S, Sautier L, Schilling G, Bokemeyer C, Koch U, Mehnert A (2015) Anxiety and fear of cancer recurrence and its association with supportive care needs and health-care service utilization in cancer patients. J Cancer Surviv 9:567–575. https://doi.org/10.1007/s11764-015-0434-2

    Article  PubMed  Google Scholar 

  23. Crist JV, Grunfeld EA (2013) Factors reported to influence fear of recurrence in cancer patients: a systematic review. Psycho-Oncology 22:978–986. https://doi.org/10.1002/pon.3114

    Article  PubMed  Google Scholar 

  24. Champagne A, Ivers H, Savard J (2018) Utilization of health care services in cancer patients with elevated fear of cancer recurrence. Psycho-Oncology 27:1958–1964. https://doi.org/10.1002/pon.4748

    Article  PubMed  Google Scholar 

  25. Shim E-J, Shin Y-W, Oh D-Y, Hahm BJ (2010) Increased fear of progression in cancer patients with recurrence. Gen Hosp Psychiatry 32:169–175. https://doi.org/10.1016/j.genhosppsych.2009.11.017

    Article  PubMed  Google Scholar 

  26. Mehnert A, Herschbach P, Berg P, Henrich G, Koch U (2006) Fear of progression in breast cancer patients – validation of the short form of the fear of progression questionnaire (FoP-Q-SF). Z Psychosom Med Psychother 52:274–288. https://doi.org/10.13109/zptm.2006.52.3.274

    Article  PubMed  Google Scholar 

  27. Mehnert A, Müller D, Lehmann C, Koch U (2006) Die deutsche Version des NCCN Distress-Thermometers. Z Psychiatr Psychol Psychother 54:213–223. https://doi.org/10.1024/1661-4747.54.3.213

    Article  Google Scholar 

  28. National Comprehensive Cancer Network (NCCN) (2003) Distress management. Clinical practice guidelines. J Natl Compr Cancer Netw 1:344–374

    Article  Google Scholar 

  29. Spitzer RL, Kroenke K, Williams JBW, Löwe B (2006) A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med 166:1092–1097. https://doi.org/10.1001/archinte.166.10.1092

    Article  PubMed  Google Scholar 

  30. Löwe B, Decker O, Müller S, Brähler E, Schellberg D, Herzog W, Herzberg PY (2008) Validation and standardization of the Generalized Anxiety Disorder Screener (GAD-7) in the general population. Med Care 46:266–274. https://doi.org/10.1097/MLR.0b013e318160d093

    Article  PubMed  Google Scholar 

  31. Löwe B, Spitzer RL, Zipfel S, Herzog W (2000) Der Gesundheitsfragebogen für Patienten (PHQ-D). Manual und Testunterlagen

  32. Spitzer RL (1999) Validation and utility of a self-report version of PRIME-MD: the PHQ primary care study. JAMA 282:1737. https://doi.org/10.1001/jama.282.18.1737

    Article  CAS  Google Scholar 

  33. Ware JE, Kosinski M, Dewey JE, Gandek B, Ware JE, Kisinski M, Ware J, Dewey J (2008) How to score and interpret single-item health status measures. A manual for users of the SF-8™ Health Survey

  34. Bonevski B, Sanson-Fisher R, Girgis A, Burton L, Cook P, Boyes A, the Supportive Care Review Group (2000) Evaluation of an instrument to assess the needs of patients with cancer. Cancer 88:217–225. https://doi.org/10.1002/(SICI)1097-0142(20000101)88:1<217:AID-CNCR29>3.0.CO;2-Y

    Article  CAS  PubMed  Google Scholar 

  35. Hinz A, Mehnert A, Ernst J, Herschbach P, Schulte T (2015) Fear of progression in patients 6 months after cancer rehabilitation- a validation study of the fear of progression questionnaire FoP-Q-12. Support Care Cancer 23:1579–1587. https://doi.org/10.1007/s00520-014-2516-5

    Article  PubMed  Google Scholar 

  36. Hanprasertpong J, Geater A, Jiamset I, Padungkul L, Hirunkajonpan P, Songhong N (2017) Fear of cancer recurrence and its predictors among cervical cancer survivors. J Gynecol Oncol 28:e72. https://doi.org/10.3802/jgo.2017.28.e72

    Article  PubMed  PubMed Central  Google Scholar 

  37. Goebel S, Kaup L, Mehdorn HM (2011) Measuring preoperative anxiety in patients with intracranial tumors: the Amsterdam preoperative anxiety and information scale. J Neurosurg Anesthesiol 23:297–303. https://doi.org/10.1097/ANA.0b013e318222b787

    Article  PubMed  Google Scholar 

  38. Goebel S, Mederer D, Mehdorn HM (2018) Surgery-related coping in surgery patients with intracranial tumors. World Neurosurg 116:e775–e782. https://doi.org/10.1016/j.wneu.2018.05.091

    Article  PubMed  Google Scholar 

  39. Goebel S, Strenge H, Mehdorn HM (2012) Acute stress in patients with brain cancer during primary care. Support Care Cancer 20(7):1425–1434. https://doi.org/10.1007/s00520-011-1225-6

    Article  PubMed  Google Scholar 

  40. Sharpe L, Curran L, Butow P, Thewes B (2018) Fear of cancer recurrence and death anxiety. Psycho-Oncology 27:2559–2565. https://doi.org/10.1002/pon.4783

    Article  CAS  PubMed  Google Scholar 

  41. Salander P (1996) Brain tumor as a threat to life and personality. J Psychosoc Oncol 14:1–18. https://doi.org/10.1300/J077v14n03_01

    Article  Google Scholar 

  42. Cohee AA, Adams RN, Johns SA, von Ah D, Zoppi K, Fife B, Monahan PO, Stump T, Cella D, Champion VL (2017) Long-term fear of recurrence in young breast cancer survivors and partners. Psycho-Oncology 26:22–28. https://doi.org/10.1002/pon.4008

    Article  PubMed  Google Scholar 

  43. Ganz PA, Kwan L, Stanton AL, Krupnick JL, Rowland JH, Meyerowitz BE, Bower JE, Belin TR (2004) Quality of life at the end of primary treatment of breast cancer: first results from the moving beyond cancer randomized trial. J Natl Cancer Inst 96:376–387

    Article  PubMed  Google Scholar 

  44. Zimmermann T, Herschbach P, Wessarges M et al (2011) Fear of progression in partners of chronically ill patients. Behav Med (Washington, D.C.) 37:95–104. https://doi.org/10.1080/08964289.2011.605399

    Article  Google Scholar 

  45. Mellon S, Kershaw TS, Northouse LL, Freeman-Gibb L (2007) A family-based model to predict fear of recurrence for cancer survivors and their caregivers. Psycho-Oncology 16:214–223. https://doi.org/10.1002/pon.1074

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

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

Author information

Authors and Affiliations

  1. Department of Clinical Psychology and Psychotherapy, Institute of Psychology, Christian-Albrechts University, Olshausenstraße 62, 24118, Kiel, Germany

    Simone Goebel

  2. Mehdorn Consilium, Prüner Gang 7, 24103, Kiel, Germany

    Hubertus Maximilian Mehdorn

Authors
  1. Simone Goebel
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Hubertus Maximilian Mehdorn
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Simone Goebel.

Ethics declarations

This study was performed in accordance with the Helsinki standard and approved by the local ethics committee.

Conflict of interest

The authors declare that they have no conflict of interest.

We have full control of all primary data and agree to allow the journal to review the data if requested.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

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

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-019-04665-9

Keywords

Search

Navigation