title: Making patient centered care a reality: a survey of patient educational programs in Italian Cancer Research and Care Institutes.
abstract: 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.
authors.affiliation: Scientific and Patients Library, CRO National Cancer Institute - IRCCS, Aviano (PN), Italy. people@cro.it.
authors.forename: C
authors.initials: C
authors.lastname: Cipolat Mis
authors.affiliation: Scientific and Patients Library, CRO National Cancer Institute - IRCCS, Aviano (PN), Italy. itruccolo@cro.it.
authors.forename: I
authors.initials: I
authors.lastname: Truccolo
authors.affiliation: Public Relations, Communication and Press Office, Istituto Scientifico Romagnolo per lo Studio e la Cura dei Tumori (IRST) Srl IRCCS, Meldola, Italy. v.ravaioli@irst.emr.it.
authors.forename: V
authors.initials: V
authors.lastname: Ravaioli
authors.affiliation: Medical Library, IRCCS-Arcispedale Santa Maria Nuova, Reggio Emilia, Italy. Simone.Cocchi@asmn.re.it.
authors.forename: S
authors.initials: S
authors.lastname: Cocchi
authors.affiliation: Clinical Psychology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy. Laura.Gangeri@istitutotumori.mi.it.
authors.forename: L
authors.initials: L
authors.lastname: Gangeri
authors.affiliation: Laboratory for medical research and consumer involvement, IRCCS-Istituto di Ricerche Farmacologiche Mario Negri, Milano, Italy. paola.mosconi@marionegri.it.
authors.forename: P
authors.initials: P
authors.lastname: Mosconi
authors.affiliation: Familiar Cancer Clinic, Veneto Institute of Oncology IOV - IRCCS, Padova, Italy. christina.drace@ioveneto.it.
authors.forename: C
authors.initials: C
authors.lastname: Drace
authors.affiliation: Department of Pediatrics, Institute of Maternal and Child Health, Burlo Garofolo, Trieste, Italy. laura.pomicino@yahoo.it.
authors.forename: L
authors.initials: L
authors.lastname: Pomicino
authors.affiliation: Experimental Medical Oncology Unit, National Cancer Research Centre, Istituto Tumori'Giovanni Paolo II', Bari, Italy. a.paradiso@oncologico.bari.it.
authors.forename: A
authors.initials: A
authors.lastname: Paradiso
authors.affiliation: Scientific Director, CRO National Cancer Institute - IRCCS, Aviano (PN), Italy. dirscienti@cro.it.
authors.forename: P
authors.initials: P
authors.lastname: De Paoli
mesh_terms: D000047:Academies and Institutes; D002173:Cancer Care Facilities; D003695:Delivery of Health Care; D004059:Diffusion of Innovation; D005260:Female; D006282:Health Personnel; D006301:Health Services Needs and Demand; D006801:Humans; D007558:Italy; D008297:Male; D009726:Nurses; D010353:Patient Education as Topic; D018802:Patient-Centered Care; D011795:Surveys and Questionnaires; D044465:White People