PRC Research Results

An international consensus has been reached regarding how to characterize a palliative care cancer population: The EAPC Basic Dataset. 

The paper by Katrin R Sigurdardottir et al could be accessed at Palliative Medicine Online. 

The work was performed as an extension of the project PRISMA (Reflecting the Positive Diversities of European Priorities for Research and Measuerment in End-of-Life Care) and in cooperation with the European Association for Palliative Care.

The PRC encourages researchers and clinicians to start using the EAPC Basic Dataset for characterizations of palliative care cancer populations! 

The EAPC Basic dataset patient form can be downloaded here:

The EAPC Basic Dataset patient form version 2

The EAPC Basic Dataset personnel form can be downloaded here:

The EAPC Basic Dataset personnel form version 2

Pilot-testing of the EAPC Basic Dataset: Read more here.

Patient friendly versions of the guidelines can be downloaded here:

The aim of EPAAC is to support European Countries in their efforts to prevent and control cancer. PRC and EAPC RN have contributed in Work Package 7 Healthcare, where one of the objectives is to improve treatment, symptom assessment and follow-up of palliative care through a standardised assessment methodology and evidence based guidelines.

In November 2013, the EPAAC publication Boosting Innovation and Cooperation in European Cancer Control: Key Findings from the European Partnership for Action Against Cancer (pdf) were launched.

In June 2014, an article which took a close look at EPAAC was published in Cancer World, the magazine of the European School of Oncoloy (ESO). The article addresses the following issues: Did EPAAC deliver on its aim of helping EU member states improve the way they organise and deliver cancer prevention, screening and care? What are the implications for collaborating over cancer in the future? The article is available here. 

The final EPAAC deliverables is available on the official EPAAC website.

Background

The prevalence rates of frequent cacner symptoms vary considerably across studies, with a range from 35 to 90% for pain as an example. These differences may in part be explained by different assessment tools, outcomes, design, population characteristics and study methods. It is also well-known that the delivery, quality, extent and degree of specialization in PC differ across countries. This, paired with the lack of agreed-upon, common criteria to describe a palliative care (PC) cancer population limit the possibility to design prospective randomized controlled treatment trials in palliative care, which is the optimal way to improve symptom management. To do this, a better understanding of how symptoms evolve and how they should be assessed and classified throughout the palliative care trajectory in large patient samples is important, paired with data on PC delivery and organization.

Objectives

The overall objective of the EPCCS is to extend the knowledge about the palliative care cancer population by collecting medical data and data on the prevalence and development of the most frequent symptoms over time. The secondary objective is to continue the work towards a standardised assessment and classification system for the most frequent cancer related symptoms, and the third aim is to relate data on symptoms and treatment to the organisational issues.

Methods

Design and methods: The EPCCS-study is a prospective, descriptive multicentre data collection exploring a brief set of medical variables and patient self-reported data on symptoms and functioning, using computers or paper forms. Prior to patient inclusion, all centres completed a web-based centre survey focusing on organisational, economic and palliative care related issues. Patient inclusion started in 2011 and continued until October 2013.

Patients: Inclusion criteria were wide; a verified cancer diagnosis, advanced disease, enrolled in a palliative care programme, >18 years, written informed consent, ability to complete the study and available for at least one follow-up registration after 1 month. Patients were recruited when coming to the participating centre for treatment or follow-up and followed on site for at least 3 months, or until death, with the following patient-reported outcomes; ESAS-r, the EORTC QLQ-PAL15, a few socio-demographic variables and a set of screening questions on pain (intensity, breakthrough, neuropathic), depression and appetite/cachexia. Objective registrations were recorded at the same time by the physician / study nurse; a brief set of medical data (diagnosis, stage of disease, height, weight, treatment etc.), cognitive status (MMSE, 4-item version), the Edmonton Classification System for Cancer Pain (ECS-CP), and Karnofsky performance status. All forms were in the local languages.

Results

Patients: The EPCCS gained widespread interest. Thirty centres from the following 12 countries participated; Australia, Belgium, Canada, Denmark, Georgia, Germany, Italy, Norway, Portugal, Spain, Switzerland, and UK, covering ten languages. 1739 patients (M/F: 50/50) with a median age of 66 (21-97) and median Karnofsky score of 70 (10-100) completed the baseline data. Gastrointestinal 30%, breast 16% and cancer in the respiratory organs 20%, were most common, and 83% had metastatic or disseminated disease. The majority of patients were included from oncology departments (34%) or hospital palliative units (45%) at baseline. Attrition was high, as expected, and 1242 completed the study forms after one month, and 641 after 3 months.

Organizational issues: Most of the participating centres had a combination of an urban and rural catchment areas. The majority (79%) had both in-patient and out-patient PC units and 61% provided in-hospital PC service. 79% provided chemo- and radiotherapy as part of the PC programme, more often in cancer centres and teaching hospitals. The percentage of cancer patients cared for in the PC units ranged from 80-100. The professional background of the head of the units was predominantly physicians.

Publication issues

The main publication from the EPCCS study has been submitted for publication. Another 11 proposals for journal articles from the collaborating centres have been approved by the scientific committee. These publication proposals focus on the following subjects:

cachexia (1), cognitive function over time (1), integration of oncology/palliative care (1), various aspects of depression (3), predictive factors for bone pain (1), symptom burden in relation to transitions between care settings (1), symptom burden/prevalence in relation to socio-demographic factors (1), breathlessness (1) and a comparison between a palliative care consultant team and a hospice setting (1).