Cancer rehabilitation indicators for Europe

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Abstract

Little is known of cancer rehabilitation needs in Europe. EUROCHIP-3 organised a group of experts to propose a list of population-based indicators used for describing cancer rehabilitation across Europe. The aim of this study is to present and discuss these indicators. A EUROCHIP-3 expert panel reached agreement on two types of indicators. (a) Cancer prevalence indicators. These were proposed as a means of characterising the burden of cancer rehabilitation needs by time from diagnosis and patient health status. These indicators can be estimated from cancer registry data or by collecting data on follow-up and treatments for samples of cases archived in cancer registries. (b) Indicators of rehabilitation success. These include: return to work, quality of life, and satisfaction of specific rehabilitation needs. Studies can be performed to estimate these indicators in individual countries, but to obtain comparable data across European countries it will be necessary to administer a questionnaire to randomly selected samples of patients from population-based cancer registry databases. However, three factors complicate questionnaire studies: patients may not be aware that they have cancer; incomplete participation in surveys could lead to bias; and national confidentiality laws in some cases prohibit cancer registries from approaching patients. Although these studies are expensive and difficult to perform, but as the number of cancer survivors increases, it is important to document their needs in order to provide information on cancer control.

Introduction

Cancer survival is increasing in Europe as a result of early diagnosis and improved treatment,1 with the corollary that the proportion of persons in the population with a (past) diagnosis of cancer is growing. According to RARECARE estimates – based on cancer registry data – there were 3566 persons per 100,000 with a diagnosis of any type of cancer in the European Union on 1st January 2003, equivalent to a total prevalence of nearly 17.8 million.2 The number of prevalent cancer cases is projected to increase as the European population continues to age, as cancer incidence increases, and as survival improves.3 EUROCARE estimated that the proportion of patients (diagnosed from 1988 to 1999) considered cured of their cancer (all cancers combined) varied between 38% and 59% in women, and 21% and 47% in men, by country.4

Cancer is often a chronic condition and patients may endure physical and psychological symptoms for years after their treatment is complete.5 Such symptoms can worsen the quality of life, and include pain, fatigue, cognitive impairment, worries about health, irritable mood, demoralization, depression and interpersonal problems.5

The Council of Europe has recognised that reducing the cancer burden in Europe will require an integrated approach to cancer control and has noted that ‘to attain optimal results a patient-centred, comprehensive interdisciplinary approach and optimal psycho-social care should be implemented in routine cancer care, rehabilitation, post-treatment and follow-up’.6

To provide data in the area of cancer rehabilitation needs, as part of its work-package 6 (WP-6) initiative, the European Cancer Health Indicator Project (EUROCHIP-3)7 recruited a group of unpaid experts to draw up a list of plausible population-based indicators able to describe cancer rehabilitation in Europe. The panel adopted the broad definition of rehabilitation proposed by the WHO: ‘a process aimed at enabling patients to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels’.8 The panel also adopted a broad definition of cancer survivors: the total prevalence of persons in the population with a diagnosis of cancer.

The aims of the present article are: (a) to describe the candidate indicators evaluated by the expert panel; (b) to present the final list of indicators proposed by the panel and (c) to present the results of a literature survey, undertaken after definition of the final list, to find English language scientific articles concerned with methods for estimating the proposed indicators.

Section snippets

Work of the panel – production of indicators

Work on cancer rehabilitation indicators started in 2009 and concluded in the early months of 2012. During that time 37 experts on cancer rehabilitation (public health professionals, epidemiologists, palliative care professionals, oncologists, clinical psychologists and other physicians) from the 27 European Union member states were recruited to the WP-6 panel. The work of the panel proceeded by meetings. Five meetings were held.9 Before the first meeting, the WP-6 coordinator group prepared a

Indicators on cancer rehabilitation needs

The expert panel found that the indicator best able to quantify patients with rehabilitation needs was total prevalence.12 This indicator can be estimated from cancer registry data12 or through mathematical modelling of mortality and survival data.13 The EUROPREVAL14 and RARECARE2 projects produced estimates of total prevalence by cancer site in Europe in 1992 and 2003, respectively. Total prevalence comprises recently-diagnosed patients, those undergoing treatment or follow-up and also

Discussion

All indicators of cancer rehabilitation discussed by EUROCHIP-3 had two prerequisites: they had to be population-based and had to be collectable by standardised methods across all European countries. The implication is that the main source of indicators must be population-based cancer registries. Cancer registries are present in most European countries, although the percentage of national populations covered by cancer registration varies.40 Two main types of indicators emerged from the

EUROCHIP-3 working group on cancer rehabilitation

Austria: Hubert Denz (National Hospital Tirol), Elisabeth Andritsch (Medical University of Graz); Belgium: Elke Van Hoof (Belgian Cancer Centre), Clair Watts (European Oncology Nursing Society); Bulgaria: Nikolay Yordanov (Comprehensive Cancer Centre- Vratsa Ltd.); Cyprus: Sophia Nestoros (Ministry of Health); Czech Republic: Olga Svestkova (Charles University); Denmark: Christoffer Johansen (Danish Institute of Public Health); Estonia: Piret Veerus (National Institute for Health Development);

Conflict of interest statement

None declared.

Acknowledgments

This document was produced by ‘EUROCHIP-3: European Cancer Health Indicator Project – Common Actions’ which received funding from the European Union as part of the framework of the Health Programme (Contract No. 2007121 with the Executive Agency for Health and Consumers). The authors thank Don Ward for help with English.

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