The power of informal cancer caregivers' writings: results from a thematic and narrative analysis.

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.

Priorities for Cancer Research From the Viewpoints of Cancer Nurses and Cancer Patients: A Mixed-Method Systematic Review.

BACKGROUND: Setting priorities in oncology is a useful way to produce a robust set of research questions that researchers can address. OBJECTIVE: The aim of this review was to describe cancer nurses and patients' main research priorities and describe their development over time. METHODS: A mixed-method systematic review was conducted for the period from 2000 to 2018 through a search of multiple databases. The methodological quality of the studies included was assessed using the Mixed-Methods Appraisal Tool, and the process of setting the health research priorities was assessed using Viergever's tool. Each study's top research priorities were extracted and summarized in categories. RESULTS: Fifteen studies were included: 13 addressed nurses' research priorities, and 2 focused on those of patients. The majority were Delphi and quantitative studies that were conducted in the United States and United Kingdom. The quality criteria score and the quality of the process were considered sufficiently good. The most important research priorities were categorized as disease control and management, patient-related issues, and professional dimensions and issues. Management of symptoms and pain, education, information, and communication were research priorities always present in the articles during the study period. CONCLUSION: Priorities change over time and depend on several factors; however, some have remained consistent for the last 18 years. Although there is increasing emphasis on including patients in establishing research priorities that inform cancer care, this involvement is still lacking. IMPLICATIONS FOR PRACTICE: Future studies should describe the primary cancer research priorities of nurses in collaboration with patients.

Evaluating self-directed learning abilities as a prerequisite of health literacy among older people: Findings from a validation and a cross-sectional study.

AIMS AND OBJECTIVES: To validate a tool measuring self-directed learning (SDL) abilities and to determine these abilities among older individuals attending the University of the Third Age. BACKGROUND: Health literacy (HL) and SDL abilities have been documented as being closely linked to each other and as prerequisites in enhancing self-management competences required by older people to protect their health and to manage health issues. Furthermore, individuals with SDL abilities have been documented to have a full understanding of their health treatment prescriptions, to be able to demonstrate increased compliance and to further develop self-care competences. DESIGN: A validation and a cross-sectional study design. METHODS: A consecutive sample of 313 older people (68.7% female) who attended lessons in two Italian Universities of the Third Age and who were willing to participate in the study were enrolled. The Self-Rating Scale of Self-Directed Learning (SRSSDL) validated previously in the healthcare context, was used. RESULTS: At the exploratory and confirmatory factor analysis, the SRSSDL in Older people (SRSSDLO) has demonstrated good psychometric properties: the tool is composed by four factors ("Awareness," "Attitudes," "Availability" and "Motivation") and 13 items. According to the findings, the average SDL score was 54.27 ± 6.69 out of 65, and women achieved significantly higher scores compared with men (54.81 ± 6.69 vs. 53.08 ± 6.54, p = .033), while participants with a university degree (55.95 ± 6.56) or secondary education (54.75 ± 6.13) had higher scores than those with lower secondary education (50.37 ± 7.34, p = .002). CONCLUSIONS: Participants were responsible for their learning processes and were capable of identifying learning needs and goals. They were also internally motivated to develop learning methods and to organise learning activities. However, they were less able to keep up to date with the learning resources available. IMPLICATIONS FOR PRACTICE: The SRSSDLO can help nurses identify healthy older people that lack SDL abilities and design tailored educational interventions to prevent health conditions and/or promote self-care management in chronic conditions.

Patients and caregivers' unmet information needs in the field of patient education: results from an Italian multicenter exploratory survey.

Patient education and empowerment (PEE) is aimed at improving competence of patients during their clinical path and enabling healthcare providers with specific communication strategies. We investigated the interest of Italian Cancer Research & Care Centers (CRCI) users (patients and caregivers) in being involved in PEE activities. An anonymous questionnaire addressed to users was distributed between June 2013 and February 2014. The questionnaire gathered information on the following: health-related topics; 13 different PEE initiatives/modalities of learning already active at CRCI; personal demographic data; the willingness to be more involved in the organization of health services provided and in which context; and five preferred info-educational activities. Frequency distribution and chi-square analysis were computed. Statistical significance (p value) was set at < 0.05. A total of 875 (29%) users responded to the 3000 distributed questionnaires. The first three priorities of interest were "early diagnosis" (18%), "prevention" (17%), and "diagnosis explanation" (13%). The first three priorities on informational activity were as follows: "classes on cancer-related topics with healthcare professionals" (28%); "cancer information service" (22%); "drug information point" (7%). Forty-nine percent of the respondents stated that they would like to be involved in the organization of PEE activities, particularly caregivers and users older than 55 years of age. The preferred educational activities were "classes on cancer-related topics with healthcare professionals" and "cancer information service" on a face-to-face modality. Patients were more interested than caregivers in "prevention." The extension of PEE programs to all CRCI users into routine care will be the next step of the present research.

Cross-cultural validation of health literacy measurement tools in Italian oncology patients.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Web Conversations About Complementary and Alternative Medicines and Cancer: Content and Sentiment Analysis.

BACKGROUND: The use of complementary and alternative medicine (CAM) among cancer patients is widespread and mostly self-administrated. Today, one of the most relevant topics is the nondisclosure of CAM use to doctors. This general lack of communication exposes patients to dangerous behaviors and to less reliable information channels, such as the Web. The Italian context scarcely differs from this trend. Today, we are able to mine and analyze systematically the unstructured information available in the Web, to get an insight of people's opinions, beliefs, and rumors concerning health topics. OBJECTIVE: Our aim was to analyze Italian Web conversations about CAM, identifying the most relevant Web sources, therapies, and diseases and measure the related sentiment. METHODS: Data have been collected using the Web Intelligence tool ifMONITOR. The workflow consisted of 6 phases: (1) eligibility criteria definition for the ifMONITOR search profile; (2) creation of a CAM terminology database; (3) generic Web search and automatic filtering, the results have been manually revised to refine the search profile, and stored in the ifMONITOR database; (4) automatic classification using the CAM database terms; (5) selection of the final sample and manual sentiment analysis using a 1-5 score range; (6) manual indexing of the Web sources and CAM therapies type retrieved. Descriptive univariate statistics were computed for each item: absolute frequency, percentage, central tendency (mean sentiment score [MSS]), and variability (standard variation σ). RESULTS: Overall, 212 Web sources, 423 Web documents, and 868 opinions have been retrieved. The overall sentiment measured tends to a good score (3.6 of 5). Quite a high polarization in the opinions of the conversation partaking emerged from standard variation analysis (σ≥1). In total, 126 of 212 (59.4%) Web sources retrieved were nonhealth-related. Facebook (89; 21%) and Yahoo Answers (41; 9.7%) were the most relevant. In total, 94 CAM therapies have been retrieved. Most belong to the "biologically based therapies or nutrition" category: 339 of 868 opinions (39.1%), showing an MSS of 3.9 (σ=0.83). Within nutrition, "diets" collected 154 opinions (18.4%) with an MSS of 3.8 (σ=0.87); "food as CAM" overall collected 112 opinions (12.8%) with a MSS of 4 (σ=0.68). Excluding diets and food, the most discussed CAM therapy is the controversial Italian "Di Bella multitherapy" with 102 opinions (11.8%) with an MSS of 3.4 (σ=1.21). Breast cancer was the most mentioned disease: 81 opinions of 868. CONCLUSIONS: Conversations about CAM and cancer are ubiquitous. There is a great concern about the biologically based therapies, perceived as harmless and useful, under-rating all risks related to dangerous interactions or malnutrition. Our results can be useful to doctors to be aware of the implications of these beliefs for the clinical practice. Web conversation exploitation could be a strategy to gain insights of people's perspective for other controversial topics.

Providing patient information and education in practice: the role of the health librarian.

In this article, guest writer Ivana Truccolo presents an overview of her work at the Scientific and Patient Library of a Cancer Comprehensive Centre in Italy coordinating the patient education process. She discusses the historical evolution of the concept of patient education and how this has run alongside the role of the health librarian in the provision of consumer health information. Details are provided about various patient education programmes in place at the Centre. In particular, various activities are discussed including patient education classes, the development of patient education handouts and a narrative medicine programme which includes a literary competition. The article concludes with a specific outline of the role the health librarian can play in the provision of consumer health information and patient education. H.S.

Patient-Centered Cancer Care Programs in Italy: Benchmarking Global Patient Education Initiatives.

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.

Cancer, adolescence, and their peers: "they'll give you a story".

Following the model of other international oncology units, a framework was developed to create a special unit for adolescents and young adults (Youth Area) within a cancer research hospital in Italy by defining relevant parameters to improve personalized healthcare delivery and the reduction of the impact of the disease on 14-24 year old patients. The intervention became fully operational in 2007 and allows patients and their families to make decisions on their own care. The concept of "Youth Area" denotes an open model for society to put the patient back into the center of clinical care. We directly want to involve our adolescent and young adult (AYA) patients in participating in conferences so they themselves can send out a positive message to their healthy peers. Furthermore, activities centered on the normal development of AYA patients are encouraged. To highlight this innovative concept, the Youth Area has sponsored various published books. We believe that this intervention may represent an effective new tool for cancer patient care in young Italians.

[The role of the scientific librarian in HTA:what is the status quo and what are the prospects]. / Il ruolo del bibliotecario scientifico nell'Health Technology Assessment: quale lo stato di fatto e quali le prospettive?

The first Italian experiences of HTA are born inside single hospitals and, lately, regional health care systems. In Italy, anyway, no agency had health technology assessment as an institutional duty until 2007, the year of the founding of the Italian Society of Health Technology Assessment (SIHTA). In times of "spending review", the HTA, whose purpose is to make decisions about health technologies rational and consistent with a context of scarce resources, is increasingly emerging as a priority need of the National Health System. The objective of this paper is to analyze if and how the librarian is involved in the process of health technology assessment, analyzing the results of a survey performed at a selection of Italian research organizations. The analysis of the results shows that the Italian situation is still very varied, from the point of view of HTA, and health technologies are often introduced without any preliminary analysis. The librarian is almost never represented within the HTA evaluation group and his/her knowledge of HTA should be improved.

National Cancer Information Service in Italy: an information points network as a new model for providing information for cancer patients.

The international literature data report that good information and communication are fundamental components of a therapeutic process. They contribute to improve the patient-health care professional relationship, to facilitate doctor-patient relationships, therapeutic compliance and adherence, and to the informed consent in innovative clinical trials. We report the results of a multicentric national initiative that developed a 17-information-structure network: 16 Information Points located in the major state-funded certified cancer centers and general hospitals across Italy and a national Help-line at the nonprofit organization AIMaC (the Italian oncologic patients, families and friends association), and updated the already existing services with the aim to create the National Cancer Information Service (SION). The project is the result of a series of pilot and research projects funded by the Italian Ministry of Health. The Information Service model proposed is based on some fundamental elements: 1) human interaction with experienced operators, adequately trained in communication and information, complemented with 2) virtual interaction (Help line, Internet, blog, forum and social network); 3) informative material adequate for both scientific accuracy and communicative style; 4) adequate locations for appropriate positioning and privacy (adequate visibility); 5) appropriate advertising. First results coming from these initiatives contributed to introduce issues related to "Communication and Information to patients" as a "Public Health Instrument" to the National Cancer Plan approved by the Ministry of Health for the years 2010-2012.

CIGNOweb.it.

We introduce CIGNOweb.it, a database of oncology resources for patients, the general public and healthcare professionals. It builds on the previous Italian cancer resource Azaleaweb and offers quality-evaluated content. It meets international bibliographic and technical standards such as the Open Archives Initiative (OAI) for web content interoperability and the Functional Requirements for Bibliographic Records (FRBR) for bibliographic description with respect to the different media, applications, and user needs. Database content is supplied in collaboration with non-profit associations, libraries and the network of Cancer Information Points that is currently being established all over Italy. Expert and customer evaluation and feedback are provided for in the system. The graphic layout has been painstakingly designed to be user-friendly for a non-expert public. CIGNOweb.it is multicentric and will in time offer health information outside the field of oncology. It is designed to become a multilingual tool to organize, optimize and access patient information produced in the languages of the "newer" European countries. It is hoped that CIGNOweb.it will support other European nations in enhancing the structure and organization of their own-language patient health information and will contribute towards making a common health information portal of the European Union a reality.

Science, institutional archives and open access: an overview and a pilot survey on the Italian cancer research institutions.

BACKGROUND: The Open Archive Initiative (OAI) refers to a movement started around the '90 s to guarantee free access to scientific information by removing the barriers to research results, especially those related to the ever increasing journal subscription prices. This new paradigm has reshaped the scholarly communication system and is closely connected to the build up of institutional repositories (IRs) conceived to the benefit of scientists and research bodies as a means to keep possession of their own literary production. The IRs are high-value tools which permit authors to gain visibility by enabling rapid access to scientific material (not only publications) thus increasing impact (citation rate) and permitting a multidimensional assessment of research findings. METHODS: A survey was conducted in March 2010 to mainly explore the managing system in use for archiving the research finding adopted by the Italian Scientific Institutes for Research, Hospitalization and Health Care (IRCCS) of the oncology area within the Italian National Health Service (Servizio Sanitario Nazionale, SSN). They were asked to respond to a questionnaire intended to collect data about institutional archives, metadata formats and posting of full-text documents. The enquiry concerned also the perceived role of the institutional repository DSpace ISS, built up by the Istituto Superiore di Sanità (ISS) and based on a XML scheme for encoding metadata. Such a repository aims at acting as a unique reference point for the biomedical information produced by the Italian research institutions. An in-depth analysis has also been performed on the collection of information material addressed to patients produced by the institutions surveyed. RESULTS: The survey respondents were 6 out of 9. The results reveal the use of different practices and standard among the institutions concerning: the type of documentation collected, the software adopted, the use and format of metadata and the conditions of accessibility to the IRs. CONCLUSIONS: The Italian research institutions in the field of oncology are moving the first steps towards the philosophy of OA. The main effort should be the implementation of common procedures also in order to connect scientific publications to researchers curricula. In this framework, an important effort is represented by the project of ISS aimed to set a common interface able to allow migration of data from partner institutions to the OA compliant repository DSpace ISS.

Interferon-alpha for maintenance of follicular lymphoma.

BACKGROUND: Indolent non-Hodgkin's lymphoma, in particular follicular lymphoma (FL), is characterized by multiple remissions and relapses. Several studies have used interferon-alpha (IFN) to control this disease, both as induction and as maintenance therapy. It is not yet clear whether IFN can be associated with a survival benefit although it may prolong progression-free survival. OBJECTIVES: To determine the effects of IFN in the maintenance therapy of FL. SEARCH STRATEGY: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library, Issue 4, 2008), MEDLINE (1966 to 2008), DARE (1990 to 2008), SCOPUS (searched December 2008) and Current Contents (1975 to 2008). . SELECTION CRITERIA: Randomised controlled trials of IFN versus no intervention or placebo, or IFN plus chemotherapy versus chemotherapy alone, in a maintenance setting in patients with non-Hodgkin's FL. Primary outcomes were overall survival and progression-free survival. DATA COLLECTION AND ANALYSIS: Three review authors independently assessed trial quality and extracted data. We contacted study authors for additional information. We collected adverse events information from the trials. MAIN RESULTS: We included eight trials (1563 patients). The drug was IFN alfa-2b in six trials and alfa-2a in two. Trials were heterogeneous in terms of diagnosis of FL, using several classification systems. IFN had been compared with placebo/no intervention in five trials and other chemotherapy in three. The effect of IFN was similar to that of placebo on overall survival (hazard ratio (HR) 0.90, 95% CI 0.61 to 1.34) whereas IFN was more effective when added to chemotherapy (HR 0.68, 95% confidence interval (CI) 0.52 to 0.90). Considering IFN versus all comparators, IFN was effective in prolonging progression-free survival (HR 0.66, 95% CI 0.57 to 0.77) and overall survival (fixed effects HR 0.79, 95% CI 0.67 to 0.94, I(2) = 52%). After adjustment for heterogeneity this statistically significance disappeared (random effects HR 0.82, 95% CI 0.63 to 1.08). Toxicity and patients lost to follow up were significantly higher in the IFN groups. AUTHORS' CONCLUSIONS: There is evidence that addition of IFN as maintenance therapy for FL improves progression-free survival. A net benefit for overall survival is less evident. In the included studies, IFN was associated with significant toxicities that may have a major impact on a patient's quality of life.

A pilot project of a cancer patient library in Italy: results of a customer-satisfaction survey and its products.

AIMS: The purpose of this study is to determine the degree of satisfaction of users of the Cancer Information Point section of the Library for Patients (CIP-LP), active since 1998 at the National Cancer Institute of Aviano, Italy. The CIP-LP is based on a skilled intermediary, adequate informative material and a specific location, within the Scientific Library of the Institute. PATIENTS AND METHODS: A survey was developed to assess service functionality and quality from the users' viewpoint. During a 6-month period, a questionnaire was mailed to 194 patients and relatives who previously used the CIP-LP; 113 (58%) were returned and processed. RESULTS: Of the respondents, 91% were pleased with the CIP-LP and 95% would recommend the service to other people. The information obtained contributed to a clearer understanding of the illness and treatment (45% as first answer) and a better control of the situation (33%). Fifty-one per cent evaluated the information received as 'good', 42%'excellent' and 4%'of sufficient quality'. CONCLUSION: This survey shows the appreciation and usefulness in the users' perception of a specific hospital library for cancer patients and their relatives, providing an information service supplementary to doctor-patient communication.