Patients’ Experience of Living with Cancer-associated thrombosis in Spain (PELICANOS)
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.
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.
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.
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.
KeywordsCancer associated thrombosis Venous thromboembolism Qualitative Patient experience Supportive
PELICANOS was funded through a physician-initiated study grant by Leo Pharma.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
- 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–e494SCrossRefPubMedPubMedCentralGoogle 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 PsycholGoogle Scholar
- 18.Lewins A, Silver C (2007) Using software in qualitative research: a step-by-step guide. Los Angeles; London: SAGE. xi, 288 p. pGoogle Scholar
- 19.Ritchie J SL (1994) Qualitative data analysis for applied policy research. In: Bryman A BR, editor. Analyzing Qualitative Data. New York: RoutlegeGoogle Scholar