Survey of European Blood and Marrow Transplant (EBMT) nurses to explore the current topical skin management of chronic cutaneous graft versus host disease in the real-world clinical environment.

PURPOSE: To understand the current practice in relation to the management of topical therapy for cutaneous chronic Graft versus Host Disease (ccGvHD) and access to extracorporeal photopheresis (ECP) within European allogeneic haematopoietic cell transplantation centres by a survey of nurses. METHOD: This was a multicentre cross-national study at eligible European Blood and Marrow Transplant centres. Eligibility required more than 30% of treated patients having allogeneic haematopoietic cell transplant. Centres performing only autologous stem cell transplants were excluded from the study. RESULTS: 12% of respondents were unaware of whether their centre had a policy or not for monitoring chronic cutaneous graft versus host disease. Over half had the affiliation of a dermatologist for referral, but only 19% had access to a specialist nurse. Patient education was routinely provided in most of the centres (86%). Results suggested as the severity of a patient's chronic cutaneous graft versus host disease increased, there was a reduction in the amount of topical emollients and steroids employed. Following topical therapies, systemic treatments, and other modalities such as ECP were employed with less focus directed towards topical care. CONCLUSIONS: Topical treatment is the backbone of any treatment paradigm for chronic cutaneous graft versus host disease, however, there is no universally agreed algorithm. Improved skin care may lead to a reduction in the amount of systemic therapy required, thus increasing patients' quality of life. There is little standardisation in the topical management of chronic cutaneous graft versus host disease, despite skin being the most cited organ affected by chronic graft versus host disease, this should be addressed.

Healthcare Professional Communication on Sexual Health: A Report from the Italian Working Group on Adolescents and Young Adults with Cancer.

BACKGROUND: Sexual function is an important concern for adolescent and young adult (AYA) with cancer. The aim of this study was to explore the attitude of Italian health care professionals who deal with AYA patients with cancer toward sexual health communication. MATERIALS AND METHODS: A 11-question survey was developed by the AIOM (Associazione Italiana di Oncologia Medica) and AIEOP (Associazione Italiana Ematologia Oncologia Pediatrica) AYA workgroup and sent to AIOM and AIEOP members. RESULTS: The sample comprised 360 respondents, 54.2% AIEOP and 45.8% AIOM members. Eighty percent were physicians, 14.5% nurses, 4.7% psychologists, and 0.8% other professionals. Medical oncologists are more used to investigate about AYA sexual health than pediatric oncologists (58.2% vs. 46.2%), even if pediatrics more frequently refer patients to specific and shared protocol (40% vs. 26.1%). Both AIOM and AIEOP participants mostly talk about sexual health only on request or occasionally (78.8% and 79%, respectively). Clinician-reported barriers to communication identified in this study are lack of preparation and embarrassment for both the categories, plus the presence/interference of parents for pediatrics and lack of time for medical oncologists. Overall, less than 5% of clinicians in our survey received specific training on potential sexual health issues in AYA patients with cancer and only 2% felt adequately prepared to speak about it. CONCLUSION: Sexual health is a key component of comprehensive care for AYA with cancer during treatments. This study highlighted the need of Italian providers for specific training and guidelines on sex-related health issues encountered by AYA patients.

A Hematopoietic Stem Cell Transplantation Startup in Iraqi Kurdistan: Results in Thalassemia Patients and Analysis of the Methodology.

In hemoglobinopathy-prone regions, like the Middle East, thalassemia is the most prevalent noncommunicable life-threatening disorder of children and is highly curable by hematopoietic stem cell transplantation (HSCT). Moreover, transplantation is very cost-effective, and HSCT programs can be established directly in middle-income countries (MICs) at a reduced cost while maintaining quality standards and outcomes consistent with international ones. The aim of the present study was to review and verify the efficacy of the applied methodology through the analysis of 47 consecutive matched-related HSCTs in children with thalassemia. In 2016, the first HSCT unit for adults and children with both malignant and nonmalignant diseases was developed in Iraqi Kurdistan, thanks to a capacity building project funded by the Italian Agency for Development Cooperation. Data on clinical activity were obtained from a cohort of patients treated in the newly established HSCT unit. Primary endpoints were overall survival (OS) and thalassemia-free survival (TFS). Startup of the HSCT unit was completed over a 3-year period. Assessing and meeting minimum requirements were crucial for the startup; moreover, a team of international health care professionals (HCPs), all experts in the field of HSCT, conducted the education and training phase, involving all the clinical and nonclinical professionals in the program. At a median follow-up of 2.6 years, the 3-year TFS and OS were 82.8% (SE, 5.5%) and 87.1% (SE, 4.9%), respectively. TFS and graft-versus-host-disease-free composite survival was 80.6% (SE, 5.8%). At present, the HSCT service is completely autonomous, and more than 250 transplants have been done in both adults and children. The minimal essential requirements for an HSCT startup may be affordable in many MICs. Our results for thalassemia are comparable with international data. A twinning program with an international group of experts and a capacity-building approach is crucial for the success of the program, a strategy that allows for rapid development of HSCT units.

Self-Care of Adults with Type 2 Diabetes During the COVID-19 Pandemic: A Qualitative Interpretive Description Study.

Due to coronavirus disease 2019 (COVID-19), diabetes services have been disrupted, causing difficulties for people with type 2 diabetes mellitus (T2DM), and understanding their experience could help improve diabetes care. Therefore, we used a qualitative interpretive description to explore the experience of self-care of adults with T2DM during the COVID-19 pandemic. Data were collected using semi-structured interviews and analyzed theoretically. The sample (N = 30) was composed of 7 females and 23 males, with a mean age of 69.9 years (60-77) and 19.4 mean years (3-40) of people living with T2DM. Our findings show reduced physical activity and increased smoking and alcohol consumption affected that self-care. Increased food consumption and stress eating, with greater stress and anxiety, caused worsening of glycemic values. Participants were able to contact healthcare professionals via eHealth or telephone. Others, even those with complications, were not able to receive care or advice. These results suggest that easier contact with health providers, continuous engagement, eHealth solutions, and formal peer support could help self-care in T2DM. Advanced nursing roles and services could solve many issues reported in this study during and after the pandemic.

Organizational Challenges in the Pediatric Onco-hematology Units During the First and Second Wave of the COVID-19 Pandemic: A National Survey in Italy.

This study aimed to describe and compare, at a national level, the measures implemented in the pediatric onco-hematology units and the number of infections among patients and healthcare staff during the first and second wave of the COVID-19 pandemic in Italy. A multicenter, descriptive, online survey was conducted between15th March and 15th April 2020 (T1) and between 1 and 31st January 2021 (T2). All the Italian Pediatric Oncology and Hematology Association (AIEOP) centers were invited to participate in the study. Data of the pre-pandemic, first, and second phase were compared. Thirty-six of the 48 AIEOP centers completed the survey (75%). Several organizational, screening, and swab measures were implemented by AIEOP centers to prevent the SARS-CoV-2 infection among patients and visitors. During the pandemic, there was a significant reduction in the number of onco-hematology inpatient beds (p < 0.001), including inpatient beds dedicated to hematopoietic stem cell transplantation (HSCT), and consultations in the outpatient clinics (p < 0.001). During the first wave, 37 pediatric patients with cancer tested positive for SARS-CoV-2 versus 174 patients during the second wave. The reduction in routine services was also greater in the second than in the first wave. All the AIEOP centers showed the capacity to adapt and promptly respond to both waves of the pandemic.

Get up, stand up: Alongside adolescents and young adults with cancer for their right to be forgotten.

Adolescent and young adult cancer survivors may experience various forms of social difficulties years or even decades after completing their cancer treatments. This article will hopefully help the Italian national project dedicated to adolescents and young adults with cancer promoting political and legal solutions to stop discrimination and supporting the right to be forgotten.

Supportive Care During Pediatric Hematopoietic Stem Cell Transplantation: Prevention of Infections. A Report From Workshops on Supportive Care of the Paediatric Diseases Working Party (PDWP) of the European Society for Blood and Marrow Transplantation (EBMT).

Specific protocols define eligibility, conditioning, donor selection, graft composition and prophylaxis of graft vs. host disease for children and young adults undergoing hematopoietic stem cell transplant (HSCT). However, international protocols rarely, if ever, detail supportive care, including pharmaceutical infection prophylaxis, physical protection with face masks and cohort isolation or food restrictions. Supportive care suffers from a lack of scientific evidence and implementation of practices in the transplant centers brings extensive restrictions to the child's and family's daily life after HSCT. Therefore, the Board of the Pediatric Diseases Working Party (PDWP) of the European Society for Blood and Marrow Transplantation (EBMT) held a series of dedicated workshops since 2017 with the aim of initiating the production of a set of minimal recommendations. The present paper describes the consensus reached within the field of infection prophylaxis.

Contribution of nurses to protective environment in haematopoietic cell transplant setting: an international survey by the European Society for Blood and Marrow Transplantation.

Infections are frequently experienced complications for patients undergoing haematopoietic cell transplant (HCT). To assess current infection prevention strategies, an international survey among HCT nurses was conducted by the Nurses Group and IDWP of the EBMT. Nurse representatives from all EBMT transplant centres were invited to complete an online questionnaire on protective environment in adult and paediatric HCT units. A total of 141 complete questionnaires were returned for the isolation section and 26 for the paediatric section, the majority of respondents (89.4%) being nurses. A small number of centres (7.1%) reported not allowing visitors, the rest have rules for entering patient rooms. Most HCT units (99.3%) indicated that nurses play a critical role in infection prevention and measures differed between bacterial infections and viral infections. Many of the paediatric units (57.7%) had a play area, applying rules of entry. To our knowledge, this is the first survey on protective environment directed at nurses within HCT centres. Despite having different practices, most HCT units tend to decrease isolation procedures and the use of PPE for multi-drug resistant organisms. This must concur with an increase of hand hygiene compliance, for which our data show that there is still room for improvement.

Setting up and sustaining blood and marrow transplant services for children in middle-income economies: an experience-driven position paper on behalf of the EBMT PDWP.

Severe blood disorders and cancer are the leading cause of death and disability from noncommunicable diseases in the global pediatric population and a major financial burden. The most frequent of these conditions, namely sickle cell disease and severe thalassemia, are highly curable by blood or bone marrow transplantation (BMT) which can restore a normal health-related quality of life and be cost-effective. This position paper summarizes critical issues in extending global access to BMT based on ground experience in the start-up of several BMT units in middle-income countries (MICs) across South-East Asia and the Middle East where close to 700 allogeneic BMTs have been performed over a 10-year period. Basic requirements in terms of support systems, equipment, and consumables are summarized keeping in mind WHO's model essential lists and recommendations. BMT unit setup and maintenance costs are summarized as well as those per transplant. Low-risk BMT is feasible and safe in MICs with outcomes comparable to high-income countries but at a fraction of the cost. This report might be of assistance to health care institutions in MICs interested in developing hematopoietic stem cell transplantation services and strengthening context appropriate tertiary care and higher medical education.

Concordance between paediatric self-reports and parent proxy reports on fatigue: A multicentre prospective longitudinal study.

PURPOSE: To investigate the degree of concordance on fatigue assessment between children and adolescents with cancer and their parents, and its changes over time. METHOD: Multicentre longitudinal study. RESULTS: Data from 134 dyads were analysed. The mean age of patients was 11.7 years; caregivers had a mean age of 44.1 years. Almost 90% of patients already reported mild or moderate fatigue at the time of diagnosis, decreasing to 69.7% after one year. Concordance on the total fatigue improved over time for the total sample, moving from moderate at the time of diagnosis to good concordance after one year. CONCLUSIONS: This was the first study with a longitudinal design investigating concordance between paediatric self-reports and parent proxy reports on fatigue. It showed how concordance between proxies and patients changed over time reaching a good level after one year from the cancer diagnosis.

[Management of the Covid-19 epidemic in Italian Pediatric Hematology and Oncology centers: a nurse-led AIEOP national survey]. / Gestione dell'epidemia Covid19 nei centri di oncoematologia pediatrica Italiani: survey nazionale AIEOP condotta da infermieri.

INTRODUCTION: The COVID-19 pandemic is causing a global health emergency. Health systems are under extreme pressure because of the outbreak. Pediatric population seems to be less prone to develop a severe course of the disease. Still the information about COVID-19 infection and children affected by cancer are few. AIM: This survey aims to highlight preventive and control measures to manage COVID-19 infection in Italian Pediatric Oncology and Hematology Association (AIEOP) centers. METHODS: A multicenter, descriptive survey design was used. All the AIEOP centers were invited to complete an on-line survey. Data collection was performed between March 15, 2020 and April 15, 2020. RESULTS: Thirty six out of 48 centers responded to the survey. All the centers implemented similar preventive measures in order to control the COVID-19 spread and 77.8% of centers have created structured pathways, specific protocols or procedures; 30% of centers reduced the number of inpatient beds and 90% outpatient activity. The prevalence data collected report 14 children positive and 35 healthcare professionals positive. DISCUSSION: COVID-19 is not spreading homogeneously in Italy and children are less infected. It will be necessary to define new processes and new strategies to ensure safety and continuity of care to children affected by cancer, even in the future, when the lockdown will end, and new measures will be implemented.

The first hematopoietic stem cell transplantation centre in Iraqi Kurdistan: nursing perspectives and education.

AIM: To describe the nursing capacity-building process within the foundation of a hematopoietic stem cell transplantation (HSCT) centre at the Hiwa Cancer Hospital (HCH), Sulaymaniyah, Iraqi Kurdistan, referring to nursing education, empowerment and leadership. METHODS: 1) Capacity building, the process by which individuals, organisations, institutions and societies develop abilities to perform functions, solve problems and set and achieve objectives, was implemented; 2) Nurse intervention was based exclusively on training and coaching on site, which is an innovative approach, since more often experts are brought to the centre to train people on site; 3) Nurses' personal skills, knowledge and training needs in the field at the HSCT centre were preliminarily explored through an online survey, and intervention was also addressed considering personal preferences and challenges; 4) Clinical documentation implementation and nursing professional organisation improvements were developed. RESULTS/FINDINGS: 1) up to June 2018, 98 patients have been transplanted (69 autologous + 29 allogeneic graft). The centre at the HCH represents the first in Kurdistan and the only centre carrying out allogeneic transplants in the whole of Iraq; 2) twenty-two staff nurses; three nurses in charge and one head nurse are employed in the HSCT centre. Nurses currently have good capability to manage daily care for patients in the HSCT centre. There are still training needs to be addressed; 3) and 4) implementation of organigram, job description and nursing plans. The situation, background, assessment, recommendation method for nursing handover was introduced. Nursing shifts duration was changed. CONCLUSION/IMPLICATIONS FOR NURSING: Capacity building cooperation is a powerful means to successfully establish a high technology medical programme, and is a feasible method to enhance skills and expertise even in low resources contexts. The programme is still in progress and consolidating actions are still required. Nurses need to enforce professional leadership and work organisation. The HSCT centre local team needs to improve teamwork and shared decision making.

Experiences of community-dwelling older adults living with multiple chronic conditions: a qualitative study.

OBJECTIVES: The aim of the study was to understand the experiences of living with multiple chronic conditions (MCC) from the perspective of community-living older adults with MCC. DESIGN: A qualitative study using an interpretive description approach. SETTING: Participants were recruited from southern Ontario, Canada. PARTICIPANTS: 21 community-living, older adults (≥65 years) with an average of 7.4 chronic conditions including one of diabetes, dementia or stroke. METHODS: Data were collected through digitally-recorded, in-depth, semi-structured in-person interviews. Interview transcripts were analysed and coded using Thorne's interpretive description approach. RESULTS: Five themes were identified representing older adults' experiences of living with MCC: (a) trying to stay healthy while living with MCC, (b) depending on family caregivers for support with just about everything, (c) paying the high costs of living with MCC, (d) making healthcare decisions by proxy and (e) receiving healthcare services that do not address the complex needs of persons living with MCC. CONCLUSIONS: The experience of living with MCC in the community was complex and multi-faceted. The need for a person-centred and family-centred approach to care in the community, which includes the coordination of health and social services that are tailored to the needs of older adults and their informal caregivers, was underscored. Such an approach would facilitate improved information-sharing and discussion of care management options between health professionals and their patients, enable older adults with MCC to actively engage in priority-setting and decision-making and may result in improved health and quality of life for older adults with MCC.

The Start-Up of the first Hematopoietic Stem Cell Transplantation Center in the Iraqi Kurdistan: a Capacity-Building Cooperative Project by the Hiwa Cancer Hospital, Sulaymaniyah, and the Italian Agency for Development Cooperation: an Innovative Approach.

We describe the entire process leading to the start-up of a hematopoietic stem cell transplantation center at the Hiwa Cancer Hospital, in the city of Sulaymaniyah, Kurdistan Iraqi Region. This capacity building project was funded by the Italian Development Cooperation Agency and implemented with the support of the volunteer work of Italian professionals, either physicians, nurses, biologists and technicians. The intervention started in April 2016, was based exclusively on training and coaching on site, that represent a significant innovative approach, and led to a first autologous transplant in June 2016 and to the first allogeneic transplant in October. At the time of reporting, 9 months from the initiation of the project, 18 patients have been transplanted, 15 with an autologous and 3 with an allogeneic graft. The center at the HCH represents the first transplantation center in Kurdistan and the second in wide Iraq. We conclude that international development cooperation may play an important role also in the field of high-technology medicine, and contribute to improved local centers capabilities through country to country scientific exchanges. The methodology to realize this project is innovative, since HSCT experts are brought as volunteers to the center(s) to be started, while traditionally it is the opposite, i.e. the local professionals to be trained are brought to the specialized center(s).

An Association Between Pain and American Association of Respiratory Care 2010 Guidelines During Tracheal Suctioning.

INTRODUCTION: Tracheal suctioning is recalled by mechanically ventilated patients as the most painful procedure during their stay in the intensive care unit. AIM: The aim of this study was to evaluate whether the implementation of American Association of Respiratory Care suction guidelines positively affects the levels of patients' pain. MATERIALS AND METHODS: This is a prospective observational study on adult patients admitted to 2 general intensive care units. Pain levels in sedated mechanically ventilated patients were recorded before, during, and after tracheal suctioning, using the Critical Care Pain Observation Tool (CPOT). RESULTS: Forty-seven patients were enrolled, with a mean age of 61.72 (±18.46) years. Median CPOT value was 0 (quartile 1 [Q1] [25%], 0; quartile 3 [Q3] [75%], 0; min, 0; max, 2) during the procedure. The Critical Care Pain Observation Tool reached a median value of 3, while 5 minutes after suctioning. Postprocedural CPOT median score was 0 (Q1 [25%], 0; Q3 [75%], 0; min, 0; max, 2). The median number of passes during suctioning was 1 (Q1, 1; Q3, 2). The sizes of suction catheters used in the recorded procedures were as follows: 12F in 27 cases (57%), 14F in 18 cases (38%), and 10F in 2 cases (5%). The median size of the endotracheal tube was 7.5 mm (Q1, 7.5; Q3, 8). The correct ratio between endotracheal tube diameter and suction catheter was used in 24 procedures (51%). CONCLUSIONS: Despite the low number of patients, this study showed that the implementation of the American Association of Respiratory Care 2010 endotracheal suctioning guidelines into practice helps to reduce procedural-induced pain. Therefore, training and continuing education are important for clinical staff performing tracheal suctioning.