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Patients’ Experience of Living with Cancer-associated thrombosis in Spain (PELICANOS)

Supportive Care in Cancer volume 26, pages 3233–3239 (2018)Cite this article

Abstract

Introduction

The previously reported Patients’ Experience of LIving with CANcer-associated thrombosis (PELICAN) identified several areas of unmet clinical and support need for cancer patients diagnosed with venous thromboembolism (VTE) in the UK. It is not known whether such experiences are restricted to one particular country’s healthcare system and culture. We therefore undertook an evaluation of patients’ experience of cancer-associated thrombosis (CAT) within a Spanish setting.

Methods

Twenty consecutive Spanish patients with CAT were interviewed about their experiences of living with CAT as per the previous PELICAN study. Where possible, spouses were interviewed in conjunction. Semi-structured interviews were audio recorded, transcribed and translated into English. Transcripts were coded using Nvivo software and data were analysed using framework analysis. A pragmatic approach was undertaken to allow explication of the potential cultural and operational differences that were not apparent in the UK dataset.

Results

Several commonalities between the UK and Spanish patients were identified including the traumatic nature of the experience, the need for information and adaptive behaviors through ritualisation. Within the major themes lay new themes as follows. (1) The traumatic experience of CAT impacted on the family dynamic with respect to discussions within the family unit and support needs of individuals other than the patient. It also had a profound impact on the patient’s concept of self with increased awareness of their mortality and seriousness of the cancer. (2) The need for information extended to the family as well as the patients. This was needed at the point of CAT diagnosis as well as an opportunity to later address unanswered questions. (3) Adaptive behaviors were common with similar ritualisations seen in the UK patients.

Conclusion

The distress experienced by patients with CAT is not isolated to the UK alone but is similar in Spanish patients as well. The patient information provided regarding LMWH injections is important, but there is a need to for patients and their families to be given additional information about CAT itself and future prognosis. CAT also has a profound impact on the patient’s family who has similar support needs. It appears that there are several commonalities between UK and Spanish patients, as well as specific local issues. This study justifies expansion of the sampling to other countries.

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References

  1. White RH (2003) The epidemiology of venous thromboembolism. Circulation 107(23 Suppl 1):I4–I8

    PubMed  Google Scholar 

  2. Noble S, Pasi J (2010) Epidemiology and pathophysiology of cancer-associated thrombosis. Br J Cancer 102(Suppl 1):S2–S9

    Article  PubMed  PubMed Central  Google Scholar 

  3. Khorana AA, Francis CW, Culakova E, Kuderer NM, Lyman GH (2007) Thromboembolism is a leading cause of death in cancer patients receiving outpatient chemotherapy. J Thromb Haemost 5(3):632–634

    Article  PubMed  CAS  Google Scholar 

  4. Blom JW, Doggen CJ, Osanto S, Rosendaal FR (2005) Malignancies, prothrombotic mutations, and the risk of venous thrombosis. JAMA 293(6):715–722

    Article  PubMed  CAS  Google Scholar 

  5. Wells PS, Forgie MA, Rodger MA (2014) Treatment of venous thromboembolism. JAMA 311(7):717–728

    Article  PubMed  CAS  Google Scholar 

  6. Noble S (2007) The challenges of managing cancer related venous thromboembolism in the palliative care setting. Postgrad Med J 83(985):671–674

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  7. Prandoni P, Lensing AW, Piccioli A, Bernardi E, Simioni P, Girolami B et al (2002) Recurrent venous thromboembolism and bleeding complications during anticoagulant treatment in patients with cancer and venous thrombosis. Blood 100(10):3484–3488

    Article  PubMed  CAS  Google Scholar 

  8. Noble SI, Shelley MD, Coles B, Williams SM, Wilcock A, Johnson MJ et al (2008) Management of venous thromboembolism in patients with advanced cancer: a systematic review and meta-analysis. Lancet Oncol 9(6):577–584

    Article  PubMed  Google Scholar 

  9. Farge D, Debourdeau P, Beckers M, Baglin C, Bauersachs RM, Brenner B et al (2013) International clinical practice guidelines for the treatment and prophylaxis of venous thromboembolism in patients with cancer. J Thromb Haemost 11(1):56–70

    Article  PubMed  CAS  Google Scholar 

  10. Kearon C, Akl EA, Comerota AJ, Prandoni P, Bounameaux H, Goldhaber SZ et al (2012) Antithrombotic therapy for VTE disease: Antithrombotic therapy and prevention of thrombosis, 9th ed: American College of Chest Physicians Evidence-Based Clinical Practice Guidelines. Chest 141(2 Suppl):e419S–e494S

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  11. Noble SI, Finlay IG (2005) Is long-term low-molecular-weight heparin acceptable to palliative care patients in the treatment of cancer related venous thromboembolism? A qualitative study. Palliat Med 19(3):197–201

    Article  PubMed  Google Scholar 

  12. Seaman S, Nelson A, Noble S (2014) Cancer-associated thrombosis, low-molecular-weight heparin, and the patient experience: a qualitative study. Patient preference and adherence. 8:453–461

    PubMed  PubMed Central  Google Scholar 

  13. Noble S, Matzdorff A, Maraveyas A, Holm MV, Pisa G (2015) Assessing patients’ anticoagulation preferences for the treatment of cancer-associated thrombosis using conjoint methodology. Haematologica 100(11):1486–1492

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  14. Hunter R, Lewis S, Noble S, Rance J, Bennett PD (2016) “Post-thrombotic panic syndrome”: a thematic analysis of the experience of venous thromboembolism. Br J Health Psychol

  15. Noble S, Lewis R, Whithers J, Lewis S, Bennett P (2014) Long-term psychological consequences of symptomatic pulmonary embolism: a qualitative study. BMJ Open 4(4):e004561

    Article  PubMed  PubMed Central  Google Scholar 

  16. Noble S, Prout H, Nelson A (2015) Patients’ Experiences of LIving with CANcer-associated thrombosis: the PELICAN study. Patient Prefer Adherence 9:337–345

    Article  PubMed  PubMed Central  Google Scholar 

  17. Noble S, Pease N, Sui J, Davies J, Lewis S, Malik U et al (2016) Impact of a dedicated cancer-associated thrombosis service on clinical outcomes: a mixed-methods evaluation of a clinical improvement exercise. BMJ Open 6(11):e013321

    Article  PubMed  PubMed Central  Google Scholar 

  18. Lewins A, Silver C (2007) Using software in qualitative research: a step-by-step guide. Los Angeles; London: SAGE. xi, 288 p. p

  19. Ritchie J SL (1994) Qualitative data analysis for applied policy research. In: Bryman A BR, editor. Analyzing Qualitative Data. New York: Routlege

  20. Blom JW, Doggen CJ, Osanto S, Rosendaal FR (2005) Old and new risk factors for upper extremity deep venous thrombosis. J Thromb Haemost 3(11):2471–2478

    Article  PubMed  CAS  Google Scholar 

  21. Catala-Lopez F, Garcia-Altes A, Alvarez-Martin E, Genova-Maleras R, Morant-Ginestar C, Arana E (2012) Economic evaluation of interventions for malignant neoplasms in Spain: systematic review and comparative analysis. Farm Hosp 36(3):141–147

    Article  PubMed  CAS  Google Scholar 

  22. Clarke RT, Bird S, Kakuchi I, Littlewood TJ, van Hamel Parsons V (2015) The signs, symptoms and help-seeking experiences of neutropenic sepsis patients before they reach hospital: a qualitative study. Support Care Cancer 23(9):2687–2694

    Article  PubMed  Google Scholar 

  23. Katiria Perez G, Cruess D (2014) The impact of familism on physical and mental health among Hispanics in the United States. Health Psychol Rev 8(1):95–127

    Article  PubMed  Google Scholar 

  24. Hartnett CS, Parrado EA (2012) Hispanic Familism Reconsidered: Ethnic Differences in Perceived Value of Children and Fertility Intentions. Sociol Q 53(4):636–653

    Article  PubMed  PubMed Central  Google Scholar 

  25. Beckford-Ball J (2009) Stiff upper lip is driving male cancer rates. Br J Nurs 18(12):713

    Article  PubMed  Google Scholar 

  26. Zuba T (2011) Ditch the ‘stiff upper lip’. Caring 30(4):44

    PubMed  Google Scholar 

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Funding source

PELICANOS was funded through a physician-initiated study grant by Leo Pharma.

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Affiliations

  1. Hospital Clinic de Barcelona, Barcelona, Spain

    Carme Font & Tanya Garcia-Fernandez

  2. Marie Curie Palliative Care Research Centre, Cardiff University, Cardiff, Wales, UK

    Annmarie Nelson, Hayley Prout, Peter Gee & Simon Noble

Authors
  1. Carme Font
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  2. Annmarie Nelson
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  3. Tanya Garcia-Fernandez
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  4. Hayley Prout
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  5. Peter Gee
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  6. Simon Noble
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Correspondence to Simon Noble.

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The authors declare that they have no conflict of interest.

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Font, C., Nelson, A., Garcia-Fernandez, T. et al. Patients’ Experience of Living with Cancer-associated thrombosis in Spain (PELICANOS). Support Care Cancer 26, 3233–3239 (2018). https://doi.org/10.1007/s00520-018-4174-5

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  • DOI: https://doi.org/10.1007/s00520-018-4174-5

Keywords

  • Cancer associated thrombosis
  • Venous thromboembolism
  • Qualitative
  • Patient experience
  • Supportive