Get-togethers: Guided Peer-Support Groups for Young Carers.

To address Young Carers' (YCs) needs for space and opportunities to reflect and exchange, a guided peer-support programme, the "Get-togethers", was developed in collaboration with YC in Switzerland in 2018. In order to evaluate if the Get-togethers were able to meet their originally set goals of (1) strengthening support among YCs, (2) promoting their life skills, (3) strengthening their social network and (4) promoting the inclusion and participation of YCs, participants of the Get-togethers were asked to complete a short questionnaire about their participation in and experiences with the Get-togethers. We also analysed the standard documentation of 17 Get-togethers held between May 2021 and September 2023. Overall, the Get-togethers were rated positively in almost all areas of the survey and the documentation, indicating that the four originally set objectives of the Get-togethers were (at least largely) achieved. The Get-togethers covered a large part of the needs of YCs, such as emotional support and opportunities to relax and exchange with people in a similar situation, yet they largely failed to reach minor YCs and male YCs. Further support programmes should be developed to address the different needs of different groups of YCs.

Patients' Perspectives on the Use of a Newly Developed "Patients' Guide for Doctor's Visit": DocVISITguide.

During doctor's visits, fundamental decisions regarding a patient's diagnosis and therapy are taken. However, consultations often take place within a limited time frame and are characterized by an asymmetric interaction. Therefore, patients' questions can remain unanswered and concerns unspoken. A "Patients' Guide for Doctor's Visit" (DocVISITguide) was developed to prepare patients for their visits, supporting them to take an active role in the communication and leave the consultation well-informed. This paper describes the development of the DocVISITguide and its first small-scale evaluation based on a sequential explanatory mixed methods design from the patients' perspective. For this purpose, a small sample of patients completed a pre- and post-questionnaire, and two in-depth interviews were conducted. Most participants found the DocVISITguide easy to understand. The guide helped them to take a closer look at their own health situation and be better prepared for the visit. More than three-quarters (82%) of the participants would probably use the guide again, and all (100%) would recommend it to family and friends. However, some patients felt unsure about using the guide within the consultation and showing it to their physician. To counteract this uncertainty, physicians should be actively involved in the use of such guides in the future.

Visibility as a Key Dimension to Better Health-Related Quality of Life and Mental Health: Results of the European Union Funded "ME-WE" Online Survey Study on Adolescent Young Carers in Switzerland.

This paper examines the health-related quality of life (HRQL) and mental health of adolescent young carers (AYCs) aged 15-17 in Switzerland, based on data collected within the Horizon 2020 project 'Psychosocial support for promoting mental health and well-being among AYCs in Europe' (ME-WE). It addresses the following questions: (1) Which characteristics of AYCs are associated with lower HRQL and with higher level of mental health problems? (2) Do AYCs who are less visible and less supported report a lower HRQL and more mental health issues than other AYCs? A total of 2343 young people in Switzerland, amongst them 240 AYCs, completed an online survey. The results show that female AYCs and AYCs with Swiss nationality more often reported having mental health issues than their male and non-Swiss counterparts. Furthermore, the findings show a significant association between receiving support for themselves and visibility from their school or employer and the HRQL. Moreover, AYCs who reported that their school or employer knew about the situation also reported fewer mental health issues. These findings can inform recommendations for policy and practice to develop measures aimed at raising the visibility of AYCs, which is the first step for planning AYC tailored support.

Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project.

Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15-17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020-2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research.

Research and Innovation for and with Adolescent Young Carers to Influence Policy and Practice-The European Union Funded "ME-WE" Project.

Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a caring role on their health, social and personal development spheres. This paper provides an overview of the main results from the ME-WE project, which is the first European research and innovation project dedicated to adolescent young carers (AYCs) (15-17 years). The project methods relied on three main activities: (1) a systematization of knowledge (by means of a survey to AYCs, country case studies, Delphi study, literature review); (2) the co-design, implementation and evaluation of a primary prevention intervention addressing AYCs' mental health (by means of Blended Learning Networks and a clinical trial in six European countries); (3) the implementation of knowledge translation actions for dissemination, awareness, advocacy and lobbying (by means of national and international stakeholder networks, as well as traditional and new media). Project results substantially contributed to a better understanding of AYCs' conditions, needs and preferences, defined tailored support intervention (resilient to COVID-19 related restrictions), and significant improvements in national and European policies for AYCs.

Relation of corona-specific health literacy to use of and trust in information sources during the COVID-19 pandemic.

BACKGROUND: COVID-19 has developed into a worldwide pandemic which was accompanied by an «infodemic¼ consisting of much false and misleading information. To cope with these new challenges, health literacy plays an essential role. The aim of this paper is to present the findings of a trend study in Switzerland on corona-specific health literacy, the use of and trust in information sources during the COVID-19 pandemic, and their relationships. METHODS: Three online surveys each with approximately 1'020 individuals living in the German-speaking part of Switzerland (age ≥ 18 years) were conducted at different timepoints during the COVID-19 pandemic, namely spring, fall and winter 2020. For the assessment of corona-specific health literacy, a specifically developed instrument (HLS-COVID-Q22) was used. Descriptive, bivariate, and multivariate data analyses have been conducted. RESULTS: In general, a majority of the Swiss-German population reported sufficient corona-specific health literacy levels which increased during the pandemic: 54.6% participants in spring, 62.4% in fall and 63.3% in winter 2020 had sufficient corona-specific health literacy. Greatest difficulties concerned the appraisal of health information on the coronavirus. The most used information sources were television (used by 73.3% in spring, 70% in fall and 72.3% in winter) and the internet (used by 64.1, 64.8 and 66.5%). Although health professionals, health authorities and the info-hotline were rarely mentioned as sources for information on the coronavirus, respondents had greatest trust in them. On the other hand, social media were considered as the least trustworthy information sources. Respondents generally reporting more trust in the various information sources, tended to have higher corona-specific health literacy levels. CONCLUSIONS: Sufficient health literacy is an essential prerequisite for finding, understanding, appraising, and applying health recommendations, particularly in a situation where there is a rapid spread of a huge amount of information. The population should be supported in their capability in appraising the received information and in assessing the trustworthiness of different information sources.

Health Literacy in the Canton of Zurich: First Results of a Representative Study.

Managing health information and services is difficult for nearly half of the population in Switzerland. Low health literacy has been shown to result in poorer health and health outcomes as well as a higher utilization of health services. To date, studies on health literacy in Switzerland have focused on a national level. However, Switzerland is a federal state with 26 cantons and a strongly decentralized health system. Therefore, the aim of this study is to understand how health literacy is distributed within the population of the canton of Zurich specifically, and to develop methods to determine whether an individual has a higher or lower level of health literacy. There were a total of 1000 participants in this representative study. Data was collected by an adapted version of the HLS-EU-Q47 and additional sociodemographic questions. The majority (56%) of the reported difficulties concerned accessing, understanding, appraising, and applying health information. The findings confirm that health literacy follows a social gradient, whereby financially deprived individuals and those with a low educational level report lower health literacy. The need for action to strengthen the health literacy of these population groups is therefore urgent. Interventions should pay particular attention to these vulnerable groups and tailor resolutions to their needs and preferences.

Immune Reconstitution-Based Score for Risk Stratification of Chronic Graft-Versus-Host Disease Patients.

INTRODUCTION: Allogeneic stem cell transplantation survivors are at a relevant risk of developing chronic GvHD (cGvHD), which importantly affects quality of life and increases morbidity and mortality. Early identification of patients at risk of cGvHD-related morbidity could represent a relevant tool to tailor preventive strategies. The aim of this study was to evaluate the prognostic power of immune reconstitution (IR) at cGvHD onset through an IR-based score. METHODS: We analyzed data from 411 adult patients consecutively transplanted between January 2011 and December 2016 at our Institution: 151 patients developed cGvHD (median follow-up 4 years). A first set of 111 consecutive patients with cGvHD entered the test cohort while an additional consecutive 40 patients represented the validation cohort. A Cox multivariate model for OS (overall survival) in patients with cGvHD of any severity allowed the identification of six variables independently predicting OS and TRM (transplant-related mortality). A formula for a prognostic risk index using the ß coefficients derived from the model was designed. Each patient was assigned a score defining three groups of risk (low, intermediate, and high). RESULTS: Our multivariate model defined the variables independently predicting OS at cGvHD onset: CD4+ >233 cells/mm3, NK <115 cells/mm3, IgA <0.43g/L, IgM <0.45g/L, Karnofsky PS <80%, platelets <100x103/mm3. Low-risk patients were defined as having a score ≤3.09, intermediate-risk patients >3.09 and ≤6.9, and high-risk patients >6.9. By ROC analysis, we identified a cut-off of 6.310 for both TRM and overall mortality.In the training cohort, the 6-year OS and TRM from cGvHD occurrence were 85% (95% CI, 70-92) and 13% (95% CI, 5-25) for low-risk, 64% (95% CI, 44-89) and 30% (95% CI, 15-47) for intermediate-risk, 26% (95% CI, 10-47), and 42% (95% CI, 19-63) for high-risk patients (OS p<0.0001; TRM p = 0.015).The validation cohort confirmed the model with a 6-year OS and TRM of 83% (95% CI, 48-96) and 8% (95% CI, 1-32) for low-risk, 78% (95% CI, 37-94) and 11% (95% CI, 1-41) for intermediate-risk, 37% (95% CI, 17-58), and 63% (95% CI, 36-81) for high-risk patients (OS p = 0.0075; TRM p = 0.0009). CONCLUSIONS: IR score at diagnosis of cGvHD predicts GvHD severity and overall survival. IR score may contribute to the risk stratification of patients. If confirmed in a larger and multicenter-based study, IR score could be adopted to identify patients at high risk and modulate cGvHD treatments accordingly in the context of clinical trial.

MYD88 L265P mutation and interleukin-10 detection in cerebrospinal fluid are highly specific discriminating markers in patients with primary central nervous system lymphoma: results from a prospective study.

Reliable biomarkers are needed to avoid diagnostic delay and its devastating effects in patients with primary central nervous system (CNS) lymphoma (PCNSL). We analysed the discriminating sensitivity and specificity of myeloid differentiation primary response (88) (MYD88) L265P mutation (mut-MYD88) and interleukin-10 (IL-10) in cerebrospinal fluid (CSF) of both patients with newly diagnosed (n = 36) and relapsed (n = 27) PCNSL and 162 controls (118 CNS disorders and 44 extra-CNS lymphomas). The concordance of MYD88 mutational status between tumour tissue and CSF sample and the source of ILs in PCNSL tissues were also investigated. Mut-MYD88 was assessed by TaqMan-based polymerase chain reaction. IL-6 and IL-10 messenger RNA (mRNA) was assessed on PCNSL biopsies using RNAscope technology. IL levels in CSF were assessed by enzyme-linked immunosorbent assay. Mut-MYD88 was detected in 15/17 (88%) PCNSL biopsies, with an 82% concordance in paired tissue-CSF samples. IL-10 mRNA was detected in lymphomatous B cells in most PCNSL; expression of IL-6 transcripts was negligible. In CSF samples, mut-MYD88 and high IL-10 levels were detected, respectively, in 72% and 88% of patients with newly diagnosed PCNSL and in 1% of controls; conversely, IL-6 showed a low discriminating sensitivity and specificity. Combined analysis of MYD88 and IL-10 exhibits a sensitivity and specificity to distinguish PCNSL of 94% and 98% respectively. Similar figures were recorded in patients with relapsed PCNSL. In conclusion, high detection rates of mut-MYD88 and IL-10 in CSF reflect, respectively, the MYD88 mutational status and synthesis of this IL in PCNSL tissue. These biomarkers exhibit a very high sensitivity and specificity in detecting PCNSL both at initial diagnosis and relapse. Implications of these findings in patients with lesions unsuitable for biopsy deserve to be investigated.

Improving the antitumor activity of R-CHOP with NGR-hTNF in primary CNS lymphoma: final results of a phase 2 trial.

Rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisone (R-CHOP) is the standard treatment of diffuse large B-cell lymphoma (DLBCL). Primary DLBCL of the central nervous system (CNS) (primary central nervous system lymphoma [PCNSL]) is an exception because of the low CNS bioavailability of related drugs. NGR-human tumor necrosis factor (NGR-hTNF) targets CD13+ vessels, enhances vascular permeability and CNS access of anticancer drugs, and provides the rationale for the treatment of PCNSL with R-CHOP. Herein, we report activity and safety of R-CHOP preceded by NGR-hTNF in patients with PCNSL relapsed/refractory to high-dose methotrexate-based chemotherapy enrolled in a phase 2 trial. Overall response rate (ORR) was the primary endpoint. A sample size of 28 patients was considered necessary to demonstrate improvement from 30% to 50% ORR. NGR-hTNF/R-CHOP would be declared active if ≥12 responses were recorded. Treatment was well tolerated; there were no cases of unexpected toxicities, dose reductions or interruptions. NGR-hTNF/R-CHOP was active, with confirmed tumor response in 21 patients (75%; 95% confidence interval, 59%-91%), which was complete in 11. Seventeen of the 21 patients with response to treatment received consolidation (ASCT, WBRT, and/or lenalidomide maintenance). At a median follow-up of 21 (range, 14-31) months, 5 patients remained relapse-free and 6 were alive. The activity of NGR-hTNF/R-CHOP is in line with the expression of CD13 in both pericytes and endothelial cells of tumor vessels. High plasma levels of chromogranin A, an NGR-hTNF inhibitor, were associated with proton pump inhibitor use and a lower remission rate, suggesting that these drugs should be avoided during TNF-based therapy. Further research on this innovative approach to CNS lymphomas is warranted. The trial was registered as EudraCT: 2014-001532-11.

The Italian Mastocytosis Registry: 6-year experience from a hospital-based registry.

AIM: We collected 'real-life' data on the management of patients with mastocytosis in the Italian Mastocytosis Registry. METHODS: Six hundred patients diagnosed with mastocytosis between 1974 and 2014 were included from 19 centers. RESULTS: Among adults (n = 401); 156 (38.9%) patients were diagnosed with systemic mastocytosis. In 212 adults, no bone marrow studies were performed resulting in a provisional diagnosis of mastocytosis of the skin. This diagnosis was most frequently established in nonhematologic centers. In total, 182/184 pediatric patients had cutaneous mastocytosis. We confirmed that in the most patients with systemic mastocytosis, serum tryptase levels were >20 ng/ml and KIT D816V was detectable. CONCLUSION: The Italian Mastocytosis Registry revealed some center-specific approaches for diagnosis and therapy. Epidemiological evidence on this condition is provided.

Treosulfan based reduced toxicity conditioning followed by allogeneic stem cell transplantation in patients with myelofibrosis.

Allogeneic transplantation is the only potentially curative strategy for myelofibrosis, even in the era of new drugs that so far only mitigate symptoms. The choice to proceed to allogeneic transplantation is based on several variables including age, disease phase, degree of splenomegaly, donor availability, comorbidities and iron overload. These factors, along with conditioning regimen and time to transplantation, may influence the outcome of ASCT. We report 14 patients affected by myelofibrosis with a median age of 57 years (range, 41-76) receiving a treosulfan-fludarabine based reduced toxicity conditioning. Patients (pts) received a stem cell transplantation from an HLA identical (n = 10) or matched unrelated donor (n = 4). All pts had a complete myeloablation followed by engraftment and in 12 out of 13 evaluated pts donor chimerism was 100% at 1 month. In most cases a reduction of splenomegaly and a reduction (or resolution) of bone marrow fibrosis was observed. After a median follow-up of 39 months (range, 3-106), the 3-year probability of overall survival and disease free survival was 54 +/- 14% and 46 +/- 14%, respectively. The cumulative incidence of non-relapse mortality at 2 years was 39 +/- 15%. Causes of non-relapse mortality were: infection (n = 2), GvHD (n = 2) and haemorrhage (n = 1). We can conclude that a treosulfan and fludarabine based conditioning has a potent myeloablative and anti-disease activity although non-relapse mortality remains high in this challenging clinical setting. Copyright © 2014 John Wiley & Sons, Ltd.

Factors affecting successful mobilization with plerixafor: an Italian prospective survey in 215 patients with multiple myeloma and lymphoma.

BACKGROUND: Although the efficacy of plerixafor in peripheral blood stem cell (PBSC) mobilization has been explored in several studies, factors associated with successful plerixafor mobilization after administration of granulocyte-colony-stimulating factor (G-CSF), with or without chemotherapy, have not been investigated. We analyzed data on PBSC mobilization from a large Italian database of lymphoma and myeloma plerixafor-treated patients. STUDY DESIGN AND METHODS: Two endpoints were established to define successful mobilization: patients with at least 2 × 10(6) CD34+ cells/kg collected by three leukapheresis procedures and patients achieving a peak count of at least 20 × 10(6) CD34+ cells/L during mobilization. RESULTS: Plerixafor achieved successful mobilization in both predicted (n = 64) and proven poor mobilizers (PMs; n = 143), classified according to the Gruppo Italiano Trapianto di Midollo Osseo (GITMO) criteria. Successful mobilization was independent of type of mobilization (steady state or chemotherapy); age; sex; disease; number or type of chemotherapy regimens preceding plerixafor; radiation therapy; prior treatment with melphalan, carmustine, lenalidomide, and radioimmune conjugates; and laboratory variables. Multivariate analysis identified previous fludarabine treatment and premobilization platelet count as predictors of successful mobilization. CONCLUSION: This large, prospective, nationwide study confirmed plerixafor efficacy for mobilizing PBSCs when added to G-CSF with or without chemotherapy. Plerixafor can overcome negative effects of most predictors of poor mobilization to achieve satisfactory harvest both in predicted and proven PM.

Priming of hematopoietic progenitor cells by plerixafor and filgrastim in children with previous failure of mobilization with chemotherapy and/or cytokine treatment.

Plerixafor has been recently approved by the European Medicines Agency for adult patients who have failed other mobilization strategies. Experience in children, however, is extremely limited. We describe the experience of the use of this drug in 8 children under a compassionate-use program in 3 Italian and 2 Spanish centers. Plerixafor was generally well tolerated; only 2 of 8 children reported adverse effects, and these were mild in intensity. Peripheral blood progenitor cell priming was improved with plerixafor in 6 of 8 patients. In the remaining 2 patients, the target CD34+ cell count was below the target of 2 × 10(6) cells/kg, although in these patients cell counts before collection were good enough for leukapheresis. Plerixafor, therefore seems to be safe and effective for peripheral blood progenitor cell mobilization in children. Adverse events were comparable with those described with filgrastim alone.

Plerixafor and G-CSF for PBSC mobilization in patients with lymphoma who failed previous attempts with G-CSF and chemotherapy: a REL (Rete Ematologica Lombarda) experience.

Plerixafor has been previously reported to improve PBSC collection in pts undergoing PBSC mobilization. Aim of the study was to assess the efficacy of plerixafor and G-CSF in pts with lymphoma who failed previous attempts of PBSC mobilization with conventional schemes of chemotherapy+G-CSF. 35 heavily pre-treated lymphoma pts (29 NHL, 6 HL) classified as "poor mobilizers" were enrolled in a program of compassionate use of plerixafor in 7 Italian centres of REL (Rete Ematologica Lombarda). Median number of previous lines of therapy was 3 and median number of previous attempts of mobilizations was 2. The median number of circulating CD34+ cells/µL following plerixafor was 11/µL. It was ≥10/µL in 17 pts and ≥20/µL in 10 pts; 13 were able to collect ≥2×10(6) CD34+ cells/kg with a median of 1 apheresis procedure; 4 pts collected ≥4×10(6) CD34+ cells/kg. A total of 6 pts had proceeded to transplant at the time of analysis. The median dose of PBSCs infused was 4×10(6)/kg and hematopoietic recovery was regular. In conclusion, plerixafor combined with G-CSF allows a collection of adequate number of PBSC in approximately 40% of cases of poor mobilizer, heavily pre-treated pts with lymphoma, who need consolidation with ASCT.