Making patient centered care a reality: a survey of patient educational programs in Italian Cancer Research and Care Institutes.

BACKGROUND: Educational intervention represents an essential element of care for cancer patients; while several single institutions develop their own patient education (PE) programs on cancer, little information is available on the effective existence of PE programs at the level of research and care institutes. In Italy such institutes--Istituti di Ricovero e Cura a Carattere Scientifico--are appointed by the Ministry of Health, and 11 (Cancer Research & Care Istitute-CRCI) of the 48 are specific for cancer on the basis of specific requirements regarding cancer care, research and education. Therefore, they represent an ideal and homogeneous model through which to investigate PE policies and activities throughout the country. The objective of this study was to assess PE activities in Italian CRCI. METHODS: We carried out a survey on PE strategies and services through a questionnaire. Four key points were investigated: a) PE as a cancer care priority, b) activities that are routinely part of PE, c) real involvement of the patients, and d) involvement of healthcare workers in PE activities. RESULTS: Most CRCI (85%) completed the survey. All reported having ongoing PE activities, and 4 of the 11 considered PE an institutional activity. More than 90% of CRCI organize classes and prepare PE handouts, while other PE activities (e.g., Cancer Information Services, mutual support groups) are less frequently part of institutional PE programs. Patients are frequently involved in the organization and preparation of educational activities on the basis of their own needs. Various PE activities are carried out for caregivers in 8 (73%) out of 11 institutes. Finally, health care workers have an active role in the organization of PE programs, although nurses take part in these activities in only half of CRCI and pharmacists are seldom included. CONCLUSIONS: The information arising from our research constitutes a necessary framework to identify areas of development and to design new strategies and standards to disseminate the culture of PE. This may ultimately help and stimulate the establishment of institutional integrated PE programs, including policies and interventions that can benefit a significant proportion of cancer patients.

More information, more choice: an Italian database for oncology patients.

BACKGROUND: In recent years there has been a proliferation of cancer information available for patients in the Italian language. However, quantity without validation and organization is by no means synonymous with providing good information and a good service. Furthermore, the lack of coordination and cooperation between the various information-providing initiatives results in uncontrolled waste. MATERIALS AND METHODS: To impose order on the vast ocean of cancer information in Italian, and to provide patients with a reliable and comprehensive tool, the Azalea Project was developed whereby a database of information for patients was created. Paper-based and electronic information is validated and stored so that patients can search and retrieve it. Validation is by means of a grid drawn up by the project team with reference to international standards. RESULTS: The nucleus of the database constructed by the Centro di Riferimento Oncologico (Oncology Referral Centre), Aviano, was extended using the wide experience of the Italian Cancer Institutes within the Italian Alliance Against Cancer. The website is at http://www.azaleaweb.it CONCLUSIONS: Meetings and courses specially designed for the project enabled evaluation grids to be created and permitted a fruitful interchange of skills and experience from a variety of professional information providers united in the common aim of providing patients with a service that meets their needs and puts them in control at a difficult time in their lives.

Information oncologic tools produced by the U.S. National Cancer Institute: how much are they known and used? Results of an enquiry in Italy.

A survey was conducted among specialized users in order to establish the level of knowledge and diffusion of four informative tools: Cancerlit, PDQ, Clinprot, Cancergram. A questionnaire was distributed to 975 graduate researchers working in four national cancer research institutes in the north (2), center (1) and south (1) of Italy, as well as to the students of the Postgraduate School of Oncology (Oncology 2nd) of the "La Sapienza" University of Rome. Respondents were 486 (49.8%): only 167 (34.4%) declared to know Cancerlit, 56 (11.5%) PDQ, 10 (2%) Clinprot and 39 (8%) Cancergrams. Moreover, there is a time gap of nearly 6 years between the availability on-line of these tools and the information of its existence by the users. Most of the respondents were in favor of inserting courses on the use of information tools into the University curriculum and of training in the use of the tools.