The SOR SAVOIR PATIENT project--an evidence-based patient information and education project.

The management of patients with cancer has evolved over recent years due to the development of the concept of ‘evidence-based medicine’ and a change in the patient–physician relationship. Evidence-based medicine assigns a greater importance to the results from clinical research in the medical decision-making process than was assigned in the past. The change in the patient–physician relationship has arisen from a request from patients for better information concerning their illness and its management, and for a greater level of involvement in the treatment decisions.

Information and decision-making are both aspects of a patient-centred approach to cancer care (this can also be defined as patient education) and are integral parts of the health-care process, although there is some controversy about the compatibility of these concepts (Bensing, 2000; Straus and McAlister, 2000; Stewart, 2001).

ROLE OF PATIENT INFORMATION

The results from many studies have highlighted that patients with cancer and their families express an important need for information. Patient's satisfaction with their management is closely related to the response to this need. The patients' understanding of their illness can help them to accept their condition and to live with their illness and participate in the care process. The absence of information seems to play an important role in the difficulties of psychological adaptation associated with being informed about the diagnosis and with the treatment (Leydon ). Several reports have identified patient information as a major quality indicator in the overall management of patients, for example, the French Agency for Accreditation and Evaluation in Health (ANAES) defines patient information and education as a criteria of quality in its accreditation system. In addition, in many countries the patients' rights for information and the physicians' obligations are enforced by law.

Nonetheless, the patients' need to be informed about the diagnosis, the treatment and the prognosis is often under-estimated by physicians (Ong ; Vennin ; Butow ; Degner ).

Patients' information needs (type and amount of detail) differ between individuals and change over the various stages of the care process (i.e. diagnosis, treatment, follow-up, rehabilitation, remission, recurrent and advanced disease) and the patients' acceptation of the illness (Demma ; Leydon ). In addition, several studies have shown that the patients who want to be informed about the disease and treatment do not always want to participate in the treatment decision (Cassileth ; Sutherland ; Blanchard ; Moumjid-Ferdjaoui and Carrere, 2000). Some patients want to know why a particular treatment is chosen, but they do not want to participate in the choice.

The discrepancies between physicians and patients' perception of information needs, and the length of consultation, which is often insufficient, are important barriers to providing patients with appropriate information within the clinical setting. Many patients actively search for information on their illness and its treatment to satisfy their need for information. For example, in a study of 191 patients with cancer in Canada, 71% reported that they had actively searched for information and 50% had used Internet. However, the physician remained the main information source for 83% of these patients (Chen and Siu, 2001).

PATIENT INFORMATION MATERIALS

The increased demand of patients with cancer for information should be met with more complete information on the benefits and also the side effects of treatment than has been previously available (Coulter, 1998). However, in oncology, the treatment schemas are often complicated, and the specialised technical language used is difficult to understand for an untrained person (Hadlow and Pitts, 1991). This increased demand for appropriate information has led to an increased development of information materials.

Unfortunately, much of the information available is inconsistent with the scientific literature and does not meet the needs of the patients (Coulter ). They often give an overoptimistic view of the treatment benefits and side effects, and they fail to mention the primary information sources on which the information is based. An analysis of more than 100 patient information booklets performed by the FNCLCC found similar results (unpublished). In addition, there was no clear mention of the involvement of patients in the preparation of the booklets.

THE SOR SAVOIR PATIENT PROJECT

In response to the evolution of the information-seeking behaviour of patients, the French National Federation of Cancer Centres (Federation Nationale des Centres de Lutte Contre le Cancer; FNCLCC) initiated the SOR SAVOIR PATIENT project in 1998. This is a programme for the development of evidence-based patient information and it falls within the framework of patient education. Patient education involves a series of structured activities, which are integrated into the health-care process, with the aim of improving patients' understanding of cancer treatment and their management of their disease. Patient education also aims to provide psychological support, facilitate physician–patient relationships and favour patients' involvement in treatment decisions. One important element is the development of information documents adapted to the needs and experiences of the patients and their families.

Objectives

The objectives of the SOR SAVOIR PATIENT project are:

to enable patients to understand the fundamental medical knowledge about their illness and its management;

to improve the participation of patients in the management of their illness and in treatment decisions;

to improve the patients' recognition and management of the consequences and side effects of their illness and its treatment;

to facilitate the dialogue between the patient and the physician.

Methodology

The medical information on which the patient information produced by this project is based on clinical practice guidelines produced by the FNCLCC for health-care specialists (Fervers ). These guidelines are produced in the setting of a national collaboration between the FNCLCC and the 20 regional cancer centres in France, and the active participation of specialists from public and private sectors, the French Oncology Federation of university hospitals and many learned societies who form a multidisciplinary working group for each specific guideline.

The development of the SOR SAVOIR PATIENT guides involves the following steps (Figure 1).

Figure 1

Outline of the methodology used in the SOR SAVOIR Patient project

The relevant specialist SOR guideline is used as the primary information source, and it is ‘translated’ into simple language by a multidisciplinary team, including methodologists, a linguist, a health anthropologist and oncology experts. This translation aims to reword the scientific information to satisfy specified readability criteria and the assumed knowledge level of the reader. The end product is a knowledge base which is used to produce the final patient information.

Once established, the knowledge base is adapted to the expressed needs of the patients and their families. Patients and their family members are actively involved throughout the process to identify specific information needs and adjust the presentation of the information to the patients' perception, experience and their level of understanding. This is facilitated throughout the development process using three complementary techniques: questionnaires, focus groups and individual interviews.

A professional working group is established (oncologists, organ specialists and other health professions concerned by the subject). This group is consulted throughout the development steps which produce the knowledge base and the SOR SAVOIR booklets. This working group validates the scientific and medical content of the information in the knowledge base and the booklets.

The final SOR SAVOIR PATIENT booklets are composed of sections (e.g. general information, diagnosis, treatment) which can be read independently, depending on the patients' specific information needs. Summaries are provided at the end of each section, and these contain key information, identified by the participating patients. There is a glossary at the end of each guide, explaining any medical and/or technical terms used in the guide. When relevant, there are practical information sheets providing information about how different examinations are performed. In the Appendix we present the translation from French to English (without the involvement of patients) of extracts from two of these practical information sheets. In addition to the information given in these examples, practical information regarding administrative and organisational matters is also given. However, since this information is specific to the French setting, we did not include it in the translated extracts.

Dissemination and implementation of the SOR SAVOIR PATIENT booklets

The SOR SAVOIR PATIENT booklets are published on paper (Figure 2), and are available free-of-charge on the FNCLCC website (http://www.fnclcc.fr). Shortly, the information will be available on the site in a hyperlink version. In the paper versions, attention is paid to the presentation of the information, in particular, the colours, the font (type and size) and also the page layout. Patients are also involved in this step.

Figure 2

The SOR SAVOIR Patient booklets produced up to 2002

Production up to 2002

Based on this methodology, five patient information guides (nonmetastatic breast cancer (2000, updated in 2002), neuroblastoma (2000), ovarian cancer (2002) and family risk of breast cancer and ovarian cancer (2002)) have been published up to the end of 2002.

The publication of seven other booklets is planned for 2003: understanding nonmetastatic non-small cell lung cancer; understanding cancer of the prostate; understanding osteosarcoma; understanding chemotherapy; understanding radiotherapy; understanding medical imaging (including positron emission tomography scanning); finding your way around social services and administration for patients with cancer and their families.

So far, over 100 patients have participated in the elaboration of the various SOR SAVOIR PATIENT booklets. Over 33 000 copies of the initial breast cancer booklet have been distributed from its publication up to November 2002. In 2001, this booklet was awarded a prize from the French medical journal ‘La Revue Prescrire’ in recognition of its quality. In response to the changes in available evidence, the booklet has been updated and was published in December 2002.

PATIENT INFORMATION IN THE SETTING OF THE PHYSICIAN–PATIENT RELATIONSHIP

Written information will never replace verbal communication in the physician–patient relationship since it cannot respond to individual fundamental needs, such as being listened to, or meet the patient's demand for individualised information and psychological support. Physicians, therefore, will remain the main information source for cancer patients (Chen and Siu, 2001).

The SOR SAVOIR PATIENT project aims to respond to the request from the patients for better information about their illness and its management, and to facilitate the communication of that information. The use of SOR SAVOIR PATIENT booklets during the physician–patient encounter is intended to facilitate and aid the dialogue between the patients and their physicians. This dialogue should enable the needs of the patient to be identified, and a personalised approach taken. In this setting, the booklets offer an advantage because the organisation of the information in the booklets enables the transmission of specific information, depending on the phase of the disease and the process of care (diagnosis, treatment, follow-up).

It is essential that the transmission of the information meets the needs of both the health-care professionals and the patients. Since the SOR SAVOIR PATIENT booklets aim to meet these needs, they will play a major role in informing patients and will lead to an improvement in their management. However, the impact of these booklets on patients' outcomes and physician–patient relationships will have to be assessed. More research is needed, in particular to better understand the cultural context and to identify how to overcome existing barriers.

EUROPEAN COLLABORATION TO SHARE EXPERIENCES

The development of good-quality patient information is a major challenge in any initiative to improve the quality of patient care (Coulter, 1998). It is generally agreed by researchers in this field that the development of good-quality information material must combine both evidence-based information sources and the active participation of patients with cancer throughout the process.

This active patient involvement should ensure that their specific information needs are satisfied, that the choice of language is appropriate, and that the patient's perception of illness and treatments is taken into consideration. However, because the information needs of patients differs, it is difficult to guarantee that the participating patients are representative. The best methods for involving patients in the process also need to be explored. The development of evidence-based patient information has raised other important questions, for example, how should the probabilities associated with the benefits and harms be presented. The results from some published studies suggest that numerical risk information should be presented, but since these results are from an English-speaking setting, and are, therefore, probably culturally specific, we need to assess if they can be extrapolated to other cultural and linguistic contexts (Edwards ).

Thus, there are many areas that require further research, although we do know that practice and experiences vary from one country to another. In the project to set up an International Network for Clinical Practice Guidelines in Oncology (Philip ), it is planned to address these research issues. The organisational, cultural and linguistic differences will be explored in the project in collaboration with the partners from different settings.