CN23 - The end of life – a topic we avoid: The Croatian National Cancer Patient Experience Survey

Background

Croatian Coalition of Associations in Healthcare designed an online questionnaire with aim to determine patient experience relating to the pathways from diagnosis to the oncology treatment. Initiative was supported by national patient’s oncology associations from twelfth Central and Eastern Europe countries.

Methods

All sixty-nine questions were proposed and formulated by patient representatives and translated on native language participating countries. Only registered members (subjects with confirmed cancer diagnosis) of the national patient oncology associations in each participating country were allowed to access and complete the online questionnaire (n=16,458). Data were collected between Oct. 2018 to Feb. 2019. The Croatian Coalition of Health Associations enabled the authors of this paper to use the collected data from a sample of the Croatian population (n=2,460) for the purpose of publication.

Results

Only 76.30% (n=1,877) participants wanted to answer questions in section relate to issues about death and dying, including thoughts and feelings about their own death. The study revealed: (i) 41.67% participant strongly agree that talking about death and dying is something that people don't like to talk about, (ii) 9.27% participants constantly and 23.58% often have thoughts about the possibility to die from cancer, (iii) 5.08% participants constantly and 13.5% often had fear od death, (iv) the highest positive response with which people they share their thoughts or feelings about death or dying are: partners (38.17%), family (34.11%) and friends (32.52%), (v) 43.09% responded that they would like die at home if they will have right care and support, and (vi) 69.23% of participants would like at the end of their life that their caregivers have support.

Conclusions

Based on the obtained data death and dying are still topics that are avoided in Croatian subgroup. The results oblige us that all members of the team caring for cancer patients must be proactive in providing support and encouragement not only during cancer treatment but also in the end of life.The results oblige us that all members of the team caring for cancer patients must be proactive in providing support and encouragement not only during cancer treatment but also in the end of life.

Clinical trial identification

Editorial acknowledgement

We thank Mr. Ivica Belina, President of the Croatian Coalition of Health Associations, for giving us permission to use the data.

Legal entity responsible for the study

Croatian Coalition of Associations in Healthcare.

Funding

Has not received any funding.

Disclosure

All authors have declared no conflicts of interest.