"Ariadne's Thread": Psycho-educational Empowerment Intervention for Patients with Metastatic Breast Cancer.

"Ariadne's thread" is a psycho-educational intervention designed by the Breast Unit and the Clinical Psychology Unit of an Italian Comprehensive Cancer Center and aims to promote empowerment in patients with metastatic breast cancer. It consists of 8 online meetings led by a psycho-oncologist in which informative sessions by patients' referring physicians alternate with moments of stress management techniques. This study aims to investigate (1) the feasibility of the "Ariadne's thread" pilot intervention and (2) the satisfaction and perceived benefits of the pilot intervention.

Cancer patients' needs for volunteer services during Covid-19: a mixed-method exploratory study.

Introduction: To date, there are no known studies that have investigated the new need for volunteer services among cancer patients during the Covid-19 pandemic. However, it is essential for volunteer associations to heighten such knowledge to best guide their offer in this challenging period.

Aim: The present study aims to provide a mapping of the cancer patients' needs for volunteer services followed at Istituto Nazionale dei Tumori in Milan (Italy) during the Covid-19 pandemic.

Quality of life after prophylactic surgery for colorectal adenomatous polyposis.

Purpose: Colorectal adenomatous polyposis is characterized by the onset of tens to thousands of adenomas in the colorectal epithelium and, if not treated, leads to a lifetime increased risk of developing colorectal cancer compared to the general population. Thus, prophylactic surgery is recommended. This study aims to investigate the quality of life of colorectal adenomatous polyposis patients following prophylactic surgery and indirectly compares these findings with those of healthy adults of the normative sample.

Characterizing Different Multidisciplinary Team Models Implemented Within One Comprehensive Cancer Center.

Background: The multidisciplinary approach is considered "best practice" in oncology. Multidisciplinary Teamwork (MDTW) can be broadly classified into Multidisciplinary Team Meetings (MDTM) and Multidisciplinary Cancer Clinics (MDCC; involving also patients), yet both models are heterogeneously implemented.

Purpose: This study aims at describing the different MDTW implemented models in a Comprehensive Cancer Center.

Evaluation of the CNC prosthetic system in recurrent breast cancer patients with chemotherapy-induced alopecia: a pilot study.

Background: Chemotherapy-induced alopecia (CIA), although generally reversible, is felt as extremely distressing by patients with breast cancer. A certified medical device (Capelli Naturali a Contatto-CNC) was produced to provide patients with a personalized scalp prosthesis, reproducing the patient's original hair, resistant to any type of everyday or sporting activity, and hairdressing.

Aims: The present study aimed to evaluate the impact of the CNC device on the patient's perception of their body image, psychological wellbeing, satisfaction, strengths and weakness of the CNC device.

Construction process and development stages of pandemic emotions questionnaire in cancer patients (PEQ-CP).

Background: Despite the numerous tools built ad hoc to investigate the effects of the CoViD-19 pandemic on people, to date there are no known questionnaires that investigate the emotional experiences of cancer patients. This work aims to start a process of construction and validation of a tool that captures these aspects (Pandemic Emotions Questionnaire in Cancer Patients-PEQ-CP).

Method: A mixed method approach was used through three phases, each on a different sample: Phase 1: creation of items and checking of internal validity, through unstructured interviews and verification of the validity of content by "peers" and "experts"; Phase 2: exploration of the factorial structure of the scale through an exploratory factor analysis (EFA); Phase 3: confirmation of the factorial structure of the scale through a confirmatory factor analysis (CFA).

A descriptive comparison of satisfaction and well-being between expander-based and direct-to-implant breast reconstruction after Nipple-Sparing Mastectomy.

Background: The literature that has explored differences between direct-to-implant (DTI) and expander-based (EB) breast reconstruction has mainly focused on complications, with results not always unambiguous. Moreover, there are limited data 1) comparing DTI and EB breast reconstruction after nipple-sparing mastectomy (NSM) and 2) from the patient's perspective.

Aim: The aim of this study was to compare satisfaction and well-being in patients undergoing DTI and EB reconstruction after NSM in a Comprehensive Cancer Center, exploring what factors can be related to satisfaction and well-being.

Cancer-related fatigue and depression: a monocentric, prospective, cross-sectional study in advanced solid tumors.

Background: Cancer-related fatigue (CRF) is common in patients with advanced solid tumors and several risk factors are described. The possible role of depression is reported by clinicians despite the association with CRF being unclear.

Material And Methods: In this monocentric, cross-sectional, prospective study we recruited patients with advanced solid tumors who were hospitalized at Fondazione IRCCS Istituto Nazionale dei Tumori of Milan.

Knowledge, use and attitudes of healthcare professionals towards patient-reported outcome measures (PROMs) at a comprehensive cancer center.

Background: Despite evidence of the positive impact of routine assessment of patient-reported outcome measures (PROMs), their systematic collection is not widely implemented in cancer care.

Aim: To assess the knowledge, use and attitudes of healthcare professionals (HCPs) towards PROMs and electronically collected PROMs (ePROMs) in clinical practice and research and to explore respondent-related factors associated with the above dimensions.

Method: An ad hoc developed online survey was administered to all HCPs employed in clinical activity in an Italian comprehensive cancer center.

Development of the Functional Assessment of Chronic Illness Therapy - Liver Transplant (FACT-LT) Scale.

Background: This study aims to propose an initial development of the FACT-Liver Transplant (FACT-LT) scale to assess the major physical and emotional concerns of patients before and after Orthotopic Liver transplant (OLT) due to acute and chronic liver failure and hepatocellular carcinoma.

Methods: The FACT-LT was developed in two phases. In Phase I, items were generated: 1) through interviews with 10 OLT experts and 15 candidates for or recipients of both oncological and non-oncological OLT which identified relevant topics; 2) from the FACIT item bank.

Expectations, experiences and preferences of patients and physicians in the informed consent process for clinical trials in oncology.

Purpose: The aim of the present study was to explore (1) informed consent (IC) representations, level of understanding, needs, and factors that influence the willingness of cancer patients to participate in randomized controlled trials (RCTs) (phase I) and (2) representations, experiences, and critical issues of physicians involved in the same process (phase II).

Methods: Semi-structured interviews were conducted with 20 cancer patients who had been asked to enroll in a phase II/III RCT (phase I). Two focus groups were conducted with 13 physicians enrolled in the same process (phase II).

Hereditary colorectal cancer syndromes and the COVID-19 pandemic: results from a survey conducted in patients enrolled in a dedicated registry.

Purpose: The coronavirus 2019 (COVID-19) pandemic has had profound consequences also for non-infected patients. This study aimed to evaluate the impact of the pandemic on the quality of life of a population with hereditary gastrointestinal cancer predisposition syndromes and on the surveillance/oncological care program of patients enrolled in a dedicated registry.

Methods: The study was conducted by means of an online self-report survey during the first Italian national lockdown.

Re-activating life skills in cancer patients through expressive-creative workshops: A qualitative exploratory study.

Background: Cancer strongly impacts on patients' lives, undermining their life skills. This research aimed to explore the perception of efficacy of participants in a series of expressive-creative workshops (ArtLab) designed to reactivate life skills in cancer patients.

Methods: Quotations of two semi-structured focus groups with ten participants in ArtLab (Mean Age = 59; SD = 11.

A Qualitative Study on the Needs of Women with Metastatic Breast Cancer.

Few studies have investigated the needs of patients with metastatic breast cancer (MBC), and none have been conducted in Italy. Three categories of needs have been identified from the literature: information, support, and practical resources. The present study aims to achieve an in-depth understanding of the patients' needs related to the MBC care pathway.

Construction of a User-Led Resource for People Transitioning to Secondary Progressive Multiple Sclerosis: Results of an International Nominal Group Study.

ManTra is a mixed-methods, co-production research project for developing an intervention (resource) for people with newly diagnosed secondary progressive multiple sclerosis (pwSPMS) in Italy and Germany. In previous project actions, six resources were outlined, meeting the needs prioritized by pwSPMS. This study aims to achieve multiple-stakeholder consensus on the most suitable resource and to refine the consensus resource.

Aromatase Inhibitors in Postmenopausal Women with Hormone Receptor-Positive Breast Cancer: Profiles of Psychological Symptoms and Quality of Life in Different Patient Clusters.

Background: Aromatase inhibitors (AIs) as adjuvant therapy after breast cancer (BC) surgery have demonstrated to reduce the risk of disease recurrence, to lower the risk of contralateral BC, and to improve survival when compared to tamoxifen in patients with limited-stage hormone receptor-positive (HR+) BC. However, AIs are associated with adverse events that can have a significant impact on patient quality of life (QoL).

Aim: This study aimed to identify profiles of psychological symptoms and QoL in HR+ BC patients undergoing AI therapy.

PATIENT VOICES, a project for the integration of the systematic assessment of patient reported outcomes and experiences within a comprehensive cancer center: a protocol for a mixed method feasibility study.

Background: Listening to "patient voices" in terms of symptoms, emotional status and experiences with care, is crucial for patient empowerment in clinical practice. Despite convincing evidence that routine patient reported outcomes and experience measurements (PRMs) with rapid feed-back to oncologists can improve symptom control, patient well-being and cost effectiveness, PRMs are not commonly used in cancer care, due to barriers at various level. Part of these barriers may be overcome through electronic PRMs collection (ePRMs) integrated with the electronic medical record (EMR).

Fear of cancer recurrence in haematological cancer patients: exploring socio-demographic, psychological, existential and disease-related factors.

Purpose: This study aims to explore the relation between the dimension of fear of cancer recurrence (FCR) in haematological cancer patients relapse-free for at least 2 years and socio-demographic, related to the disease, psychological and existential factors.

Methods: A sample of 75 haematological cancer patients agreed to participate in the study through a self-reported online questionnaire (51.9% males).

Conversion to secondary progressive multiple sclerosis: Multistakeholder experiences and needs in Italy.

Background: Conversion to secondary progressive multiple sclerosis (SPMS) is associated with a relatively poor prognosis, and SPMS is responsible for the majority of the social and economic costs associated with MS. Managing the Transition to SPMS (ManTra) is a mixed methods project conducted in Italy and Germany aimed to set up a user-led resource to empower and improve the quality of life of newly diagnosed SPMS patients.

Aims: To assess the experiences and the needs of Italian people who recently converted to SPMS, patient significant others (SOs), neurologists and other health professionals (HPs).

Risk-reducing surgery in BRCA1/BRCA2 mutation carriers: Are there factors associated with the choice?

Objective: Female carriers of BRCA1/BRCA2 mutations (BRCAm) are at increased risk of developing breast and ovarian cancer. The main prevention options currently available consist in either clinical-radiological surveillance or risk-reducing surgery. This study investigated factors that might influence the choice of risk-reducing mastectomy (RRM) and/or salpingo-oophorectomy (RRSO) over surveillance in high-risk women.

A Longitudinal Investigation of Posttraumatic Growth and Quality of Life in Liver Transplant Recipients.

Background: What does it mean to adjust to a liver transplant? Quality of life research has offered an impairment model, defining adjustment as the absence of diagnosed psychological disorder or of limitations in physical functioning. Recently emerging research on posttraumatic growth testifies the prevalence of positive life changes following the life-threatening illnesses. The present study aimed to verify the presence of the posttraumatic growth process in liver transplant patients and its relationship with traditional quality of life.

Managing the transition (ManTra): a resource for persons with secondary progressive multiple sclerosis and their health professionals: protocol for a mixed-methods study in Italy.

Introduction: 15 years after clinical onset, about 50% of patients with relapsing-remitting multiple sclerosis convert to secondary progressive multiple sclerosis (SPMS). Notwithstanding the importance of this transition, knowledge of the experiences and needs of patients and carers is fragmentary, and targeted interventions are not available. Managing the Transition to SPMS (ManTra) is a mixed methodology project to develop and test a user-led resource for newly diagnosed patients with SPMS.

Randomized controlled trial of a home-based palliative approach for people with severe multiple sclerosis.

Background: Evidence on the efficacy of palliative care in persons with severe multiple sclerosis (MS) is scarce.

Objective: To assess the efficacy of a home-based palliative approach (HPA) for adults with severe MS and their carers.

Methods: Adults with severe MS-carer dyads were assigned (2:1 ratio) to either HPA or usual care (UC).