The aim of this study was to assess the psychometric characteristics of four Health Literacy (HL) measurement tools, viz. Newest Vital Sign (NVS), Short Test of Functional Health Literacy in Adults (STOFHLA), Single Item Literacy Screener (SILS) and Single question on Self-rated Reading Ability (SrRA) among Italian oncology patients. The original version of the tools were translated from the English language into Italian using a standard forward-backward procedure and according to internationally recognized good practices. Their internal consistency (reliability) and validity (construct, convergent and discriminative) were tested in a sample of 245 consecutive cancer patients recruited from seven Italian health care centers. The internal consistency of the STOFHLA-I was Chronbach’s α=0.96 and that of NVS-I was α=0.74. The STOFHLA-I, NVS-I, SILS-I and SrRA-I scores were in a good relative correlation and in all tools the discriminative known-group validity was confirmed. The reliability and validity values were similar to those obtained from other cultural context studies. The psychometric characteristics of the Italian version of NVS, STHOFLA, SILS and SrRA were found to be good, with satisfactory reliability and validity. This indicates that they could be used as a screening tool in Italian patients. Moreover, the use of the same cross-cultural tools, validated in different languages, is essential for implementing multicenter studies to measure and compare the functional HL levels across countries.

In Italy, educational programs for cancer patients are currently provided by the national government, scientific societies, and patient advocate organizations. Several gaps limit their effectiveness, including the lack of coordinated efforts, poor involvement of patient feedback in the planning of programs, as well as a lack of resources on innovative cancer-related topics. This process is parallel to a strong shift in the attitude of patients towards health in general and taking charge of their own health conditions in particular. The National Cancer Institute in the USA and the Organization of European Cancer Institutes encourage comprehensive cancer centers in providing educational programs conceived to overcome these gaps. The goal of this paper is to identify and describe the key elements necessary to develop a global patient education program and provide recommendations for strategies with practical examples for implementation in the daily activities of cancer institutes. A multidisciplinary committee was established for patient education, including patient representatives as equal partners, to define, implement, verify, and evaluate the fundamental steps for establishing a comprehensive education program. Six essential topics were identified for the program: appropriate communication of cancer epidemiology, clinical trial information, new therapeutic technologies, support in the use of medicines, psycho-oncological interventions, age-personalized approaches, and training programs for healthcare providers. Integration of these topics along with patient feedback is the key to a successful model for educational programs. An integrated educational program can transform a comprehensive cancer center to an institution that provides research and care for and with patients.

Background: Cancer is a disease that disrupts not only the patient’s life, but that of the entire family as well, from a care, organizational, and emotional perspective. Patients share their experience of illness frequently with their informal caregiver (IC), a partner, son/daughter, friend, volunteer, or any other person in the family or social network who offers to support them during their clinical journey. The purpose of this study was to investigate ICs’ still unknown cancer experiences through the stories of IC participants in a Literary Artistic Competition the Centro di Riferimento Oncologico di Aviano (CRO) IRCSS organized, and understand the themes that emerged from their texts and hence, the power of expressive writing. Materials and methods: A qualitative study was carried out on literary texts using Mishler’s three levels of narrative analysis: thematic (to detect themes and subthemes); structural (to support the thematic level), and performative (to understand the narratives’ meaning). In addition, the narratives were classified based on Kleinman and Frank’s models. A particular focus was placed on the language of the narratives to identify figures of speech, e.g., metaphors related to cancer. Results: Seven main themes emerged from the 40 stories’ thematic analysis: perceptions of the disease; biographical breakdown; relationships; transformation of the sick body; IC’s role; encounter with death; and strength of memory. The ICs’ stories also highlighted the strengths and weaknesses of the patient’s clinical pathway. ICs are a resource not only for the patient, who, thanks to them, is assured of continuous assistance but also for the healthcare organization, above all because they serve a relational role as a “bridge” between patients and healthcare workers. ICs have important messages to offer to healthcare organizations. If involved adequately, they can provide a strategic strength in supporting patients and healthcare workers themselves. The in-depth analysis of the themes and subthemes in this study led the authors to hypothesize that expressive writing benefit ICs with respect to the possibility of sharing their experiences with others and giving evidence of their role. Their stories are a testimony that can help those who face a similar experience.

Background: Health information concerns both individuals’ engagement and the way services and professionals provide information to facilitate consumers’ health decision making. Citizens’ and patients’ participation in the management of their own health is related to the availability of tools making health information accessible, thus promoting empowerment and making care more inclusive and fairer. A novel instrument was developed (Evaluation Tool of Health Information for Consumers—ETHIC) for assessing the formal quality of health information materials written in Italian language. This study reports ETHIC’s content and face validity. Methods: A convenience sample of 11 experts and 5 potential users was involved. The former were requested to evaluate relevance and exhaustiveness, the latter both readability and understandability of ETHIC. The Content Validity Index (CVI) was calculated for ETHIC’s sections and items; experts and potential users’ feedback were analyzed by the authors. Results: All sections and most items were evaluated as relevant. A new item was introduced. Potential users provided the researchers with comments that partly confirmed ETHIC’s clarity and understandability. Conclusions: Our findings strongly support the relevance of ETHIC’s sections and items. An updated version of the instrument matching exhaustivity, readability, and understandability criteria was obtained, which will be assessed for further steps of the validation process.

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. 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. 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. 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.

The criteria for determining whether resources are included in consumer health library collections are summarized in institutional collection development policies (CDPs). Evidence suggests that CDPs do not adequately capture all of these criteria. The aim of this study was to describe the resource review experience of librarians and compare it to what is described in CDPs. A phenomenological approach was used to explore and describe the process. Four consumer health librarians independently evaluated cancer-related consumer health resources and described their review process during a semi-structured telephone interview. Afterward, these librarians completed online questionnaires about their approaches to collection development. CDPs from participating libraries, interview transcripts, and questionnaire data were analyzed. Researchers summarized the findings, and participating librarians reviewed results for validation. Librarians all utilized similar criteria, as documented in their CDPs; however, of thirteen criteria described in the study, only four were documented in CDPs. CDPs for consumer health libraries may be missing important criteria that are considered integral parts of the collection development process. A better understanding of the criteria and contextual factors involved in the collection development process can assist with establishing high-quality consumer health library collections.