OI Ljubljana
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Needs assessment, identification of criteria and development of a model for the organization of palliative cancer care at the national level

BASIC DATA OF THE RESEARCH PROJECT

  • ARRS code: V3-2239
  • TITLE: Needs assessment, identification of criteria and development of a model for the organization of palliative cancer care at the national level
  • PROJECT LEADER: Prof Vesna Zadnik, PhD
  • DURATION: 1.10.2022 – 1.10.2025
  • APPLICANT RESEARCH ORGANISATION: Institute of Oncology Ljubljana
  • FINANCING: Slovenian Research Agency

BACKGROUND

Annually, around 16,000 new cancer cases of are diagnosed in Slovenia. More than 6,500 patients with cancer die each year, while the survival of cancer patients is increasing. Additionally, number of patients with incurable, progressive cancer has been increasing. In 2018, 2541 new cancer cases were diagnosed at the advanced stage (16% of all). According to the current guidelines, people with an incurable cancer should be provided palliative care as soon as possible, while palliative care needs to be integrated into their comprehensive cancer care and provided to their caregivers, as well. 

Palliative care aims to control and relieve physical, mental, social and spiritual symptoms of patients and their caregivers, and prevent complications of an incurable disease. It was proved to increase quality of life of patients and their caregivers, potentially prolong patientsˊ lives, avoid unnecessary hospitalisations and emergency care visits and more patients with incurable disease choose to die at home. Universal palliative care should be provided by all healthcare workers in order to control and relieve non-complex symptoms of incurable disease. Specialist palliative care aims to solve complex needs of patients and their caregivers and it is provided by specially educated healthcare teams at the secondary and tertiary level.

Universal palliative care is needed by majority of cancer patients and their caregivers, while a lower proportion of them needs a specialist management. However, population needs havenˊt been clearly assessed and their estimates differ among countries. At the Institute of Oncology Ljubljana, more than 400 patients with incurable cancer are provided tertiary-level specialist palliative care each year, half of them on out-of-patient level. According to the latest reports, epidemiological data, reduction of specialist palliative care programmes during the COVID-19 pandemic and a lack of research on caregivers it was estimated for Slovenian palliative care infrastructure to be inadequate to respond to the growing needs.

AIMS AND OBJECTIVES

Project objectives are studying specialist palliative care needs of adults cancer patients and their caregivers, defining potential deficits in the existing model of specialist palliative care and developing an evidence-based, national-level model for specialist oncological palliative care for patients and their caregivers.  

Specific project objectives are:

- and in-depth study on the complex palliative care needs of patients with incurable cancer and their caregivers;

- a comprehensive population-based assessment and projection of specialist oncological palliative care needs at the national level to 2040;

- an updated inventory of the existing model for specialist palliative care in Slovenia and its implementation;

- development of a new, evidence-based, updated national-level model of a specialist palliative care for cancer patients and their families;

- provision of a basis for the development of specialist palliative care for patients with other incurable diseases.

SCOPE

First, pilot study will be carried out among patients with incurable cancer and their caregivers, who are being treated at the tertiary-level specialist palliative care department at Institute of Oncology Ljubljana. Second, the results will be incorporated with routine cancer burden data and its future projections, from which the population needs for specialist oncological palliative care will be derived. Routine data will be gathered from various health data collections, main one being the Slovenian Cancer Registry, but also the health data collections of the National Institute for Public Health and Statistical Office. Finally, a new national-level model of specialist oncological palliative care will be developed.

RESULTS AND THEIR EXPECTED IMPACT

The project is of great importance for the continued development of the Slovenian oncological healthcare system and for the quality control of health services. Our results will provide a newly developed, updated model of specialist oncological care on a national level, focused on patients and their caregivers as well. Guidelines for specialist oncological care will be published.

We expect our project results will offer an invaluable support to the development and realisation of the latest Action Plan of the National Palliative Care Programme and National Cancer Control Programme 2022-26. Additionally, our project results may serve as a basis for development for of specialist oncological care for patients with other progressive, incurable diseases beside cancer.

 

 

© 2019 - Institute of Oncology Ljubljana
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