Patient engagement in hematopoietic stem cell transplantation and cell therapy: a survey by the EBMT patient engagement task force & transplantation complications working party.

The EBMT (European Blood and Marrow Transplantation Society) aims to connect patients, the scientific community, and other stakeholders to improve hematopoietic stem cell transplantation and cellular therapy outcomes. We performed a cross-sectional online survey to understand the perceptions regarding Patient Reported Outcomes (PROs) and Patient Active Involvement in Research (PAIR) in over 800 stakeholders (n = 813). Patients (n = 278) and health care professionals (HCPs) (n = 351) were compared. We observed high openness for EBMT PRO collection (n = 680, 84.5% across stakeholders' groups; patients n = 256, 93.1% versus HCPs n = 273, 78.4% [p < 0.001]) and PAIR (n = 702, 87.3% across stakeholder groups; patients n = 256, 92.4% versus HCPs n = 296, 85.8% [p = 0.009]), with a significantly higher proportion of patients expressing interest compared to HCPs. Priority domains for PROs data-collection identified were the assessment of symptom experience, psychosocial and cognitive functioning. The most important issues for patients specifically were the data-collection of PROs reflecting cognitive function, the option of reporting data at home, the importance of identifying actionable targets to improve their recovery, and receiving feedback on their input when participating in research projects. Our multistakeholder approach suggests an added value to embracing patient engagement in the development of meaningful research and service design within the transplantation and cellular therapy community.

Safe transfer of pediatric patients from hematopoietic stem cell transplant unit into the pediatric intensive care unit: views of nurses and physicians.

Sufficient communication between hematopoietic stem cell transplantation (HSCT) and pediatric intensive care unit (PICU) teams is pivotal for a successful advanced support in the PICU for HSCT-related complications. We evaluated perceived communication and barriers between both teams with the aim of providing recommendations for improvement. In this cross-sectional survey, a self-designed online questionnaire was distributed among ESPNIC and EBMT members. Data were analyzed using descriptive statistics. Over half of HSCT respondents employed a transfer indication protocol and patient assessment tool, but less structured checklist prior to patient transfer. Nearly all PICU respondents perceived this checklist as improvement for communication. Most HSCT and PICU physicians have daily rounds upon patient transfer while this is mostly missing between nursing teams. Half of both HSCT and PICU nurses indicated that HSCT training for PICU nurses could improve communication and patient transfer. Most respondents indicated that structured meetings between HSCT and PICU nurses could improve communication. Overall there is good communication between HSCT and PICU units, although barriers were noted between members of both teams. Based on our findings, we recommend use of a structured and specific checklist by HSCT teams, HSCT training for PICU personnel, and structured meetings between HSCT and PICU nurses.

Sexual problems in patients with hematological diseases: a systematic literature review.

PURPOSE: Sexual problems are frequently reported by recipients of hematopoietic stem cell transplantation (HCT). However, little is known about the impact of hematological malignancies and their treatments, without HCT being a part of the treatment regimen. The goal of this systematic review was to examine the prevalence of various sexual problems among patients treated for hematological malignancies without HCT. METHODS: The work focused on online databases available from their inception until 11 November 2020. The data related to sexuality in adult patients diagnosed with hematological malignancies. Selected studies were appraised for methodological quality. RESULTS: Twenty-four studies were included. Twenty-two studies were observational cross-sectional cohort studies, and two studies had a prospective longitudinal design; fourteen studies used non-validated instruments; only two studies used the multidimensional concept of sexuality; six studies compared sexual problems in the target population with reference data. Based on the few high-quality studies, sexual problems occurred in 18-50% of acute leukemia, Hodgkin lymphoma, and non-Hodgkin lymphoma patients. CONCLUSION: Understanding sexual problems in patients treated for hematological malignancies without HCT is not only hampered by the variability in methodology, but also by the lack of research on patients using novel therapies. The exact impact of the diagnosis and treatment of a hematological malignancy on sexual function remains to be answered. Longitudinal studies focusing on the effects of the diagnosis and treatment of hematological malignancies on sexuality using validated questionnaires and comparison with normative data are hugely needed.

Providing Telephone-Based Support for Patients With Haematological Malignancies: A Qualitative Investigation of Expert Nurses.

BACKGROUND: Telephone-based interventions are frequently used to address cancer patient's needs, often delivered by nurses; however, little is known about nurses' opinions of such interventions. PURPOSE: The objective of this study was to investigate expert nurses' perceptions of hemato-oncology patient's needs, use of telephone interventions providing support and symptom management and intervention acceptability from a service provider perspective. A qualitative study was undertaken with focus group and individual interview. Inductive and deductive data analysis was performed using Framework Analysis and the Theoretical Framework of Acceptability. RESULTS: Two themes emerged: (1) perceived needs of haemato-oncology patients across the cancer trajectory - multifactorial influences, dynamic information needs, and continuity of care, (2) acceptability for nurses delivering interventions was determined by identification of need, agreed expectations and organisational support for the intervention. CONCLUSIONS: Greater understanding of contextual factors for recipients and individuals delivering healthcare interventions may contribute to identification of potential barriers and facilitators to adoption in clinical practice.

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.

Management of Pain and Anxiety during Bone Marrow Aspiration: An Italian National Survey.

BACKGROUND: Bone marrow aspiration (BMA) or biopsy is a necessary and frequent procedure for diagnosis and monitoring of hematological diseases. Pharmacological pain management approaches exist; however, previous experience and psychological preparation for BMA may impact pain perception. AIMS: This study aimed to explore current practices in procedural pain management for BMA or biopsy. DESIGN/SETTING/PARTICIPANTS: A cross-sectional internet-based survey was performed by the Nurses Group of the Italian Transplant Group (GITMO). Participants were nurses working in bone marrow transplant centers regularly performing BMA/biopsies. RESULTS: Sixty out of 94 centers receiving the survey responded (63.8%), 47 adult and 13 pediatric centers. The majority of them (75%) provided only verbal information for patient preparation before BMA. . Injected local anesthetics were used in 55.4% of centers, and combined with topical anesthetics in 33.9% of centers. Use of oral anesthetics was rare; however, anxiolytics and benzodiazepines were occasionally used (18.3%, 18.3% respectively). All pediatric centers used deep sedation for the procedure (p < .001), but drug choice depended on anesthetist preference. Ice packs (35.0%) and oral analgesia as required (40.0%) were used for postprocedural pain. Nurses perceived their patients' pain scores as relatively low (3.5 on scale 0-10), but recognized that it was a painful procedure provoking anxiety, and that pain management could be improved. CONCLUSIONS: Results revealed the lack of a standardized approach to procedural pain management for BMA in this study sample. Assessing a patient's pain experience is a key component to identifying effective pain management for BMA.

Influence of Needs and Experiences of Haemato-Oncology Patients on Acceptability of a Telephone Intervention for Support and Symptom Management: A Qualitative Study.

Healthcare technologies are increasingly used to address the unmet needs of patients with cancer; however new service developments must be acceptable to patients. The objective of this study was to determine the unmet needs of haemato-oncology patients and their influence on the perceived acceptability and participation in a telephone intervention delivering. A qualitative study was designed interviewing 20 participants having received the intervention. Data were analysed inductively and deductively using Framework Analysis. Three core themes emerged: (1) fluctuations in emotional distress and coping across the cancer trajectory with evidence of adaptive and maladaptive coping; (2) potential deficits in patient support, continuity of care and information provision; and (3) intervention acceptability analysis underpinned by the Theoretical Framework of Acceptability showed acceptability was influenced by participants' subjective illness contexts and unmet needs.This work contributes to understanding of personal context as a determinant of intervention acceptability in order to enhance implementation strategies.

Medical Student Research: An Integrated Mixed-Methods Systematic Review and Meta-Analysis.

IMPORTANCE: Despite the rapidly declining number of physician-investigators, there is no consistent structure within medical education so far for involving medical students in research. OBJECTIVE: To conduct an integrated mixed-methods systematic review and meta-analysis of published studies about medical students' participation in research, and to evaluate the evidence in order to guide policy decision-making regarding this issue. EVIDENCE REVIEW: We followed the PRISMA statement guidelines during the preparation of this review and meta-analysis. We searched various databases as well as the bibliographies of the included studies between March 2012 and September 2013. We identified all relevant quantitative and qualitative studies assessing the effect of medical student participation in research, without restrictions regarding study design or publication date. Prespecified outcome-specific quality criteria were used to judge the admission of each quantitative outcome into the meta-analysis. Initial screening of titles and abstracts resulted in the retrieval of 256 articles for full-text assessment. Eventually, 79 articles were included in our study, including eight qualitative studies. An integrated approach was used to combine quantitative and qualitative studies into a single synthesis. Once all included studies were identified, a data-driven thematic analysis was performed. FINDINGS AND CONCLUSIONS: Medical student participation in research is associated with improved short- and long- term scientific productivity, more informed career choices and improved knowledge about-, interest in- and attitudes towards research. Financial worries, gender, having a higher degree (MSc or PhD) before matriculation and perceived competitiveness of the residency of choice are among the factors that affect the engagement of medical students in research and/or their scientific productivity. Intercalated BSc degrees, mandatory graduation theses and curricular research components may help in standardizing research education during medical school.

Breastfeeding in breast cancer survivors: pattern, behaviour and effect on breast cancer outcome.

Little is known regarding the safety and feasibility of breastfeeding in women with a history of breast cancer. We have performed a survey among breast cancer patients who completed their pregnancy following breast cancer management to examine their lactation behaviours and its effect on breast cancer outcome. Out of 32 women identified, 20 were reachable and accepted to take the questionnaire. Ten women initiated breastfeeding, 4 stopped within one month and 6 had long-term success with a median period of 11 months (7-17 months). The latter were all previously subjected to breast conserving surgery and received qualified lactation counselling at delivery. The main reasons for not initiating breastfeeding were "uncertainty regarding maternal safety" and "a priori unfeasibility" expressed either by the obstetrician or by the oncologist. At a median follow-up of 48 months following delivery, all 20 women were alive with two relapses; one in each group (i.e., lactating and non-lactating). This analysis adds to the limited available evidence on the feasibility and safety of breastfeeding in breast cancer survivors. Proper fertility and survivorship counselling is crucial and requires more attention in breast cancer clinics.

Rituximab and subcutaneous cladribine in chronic lymphocytic leukemia for newly diagnosed and relapsed patients.

The aim of this study was to investigate the efficacy of combined treatment with rituximab and subcutaneous cladribine in patients with newly diagnosed and relapsed chronic lymphocytic leukemia (CLL). Forty-three patients with active CLL or small lymphocytic lymphoma received rituximab 375 mg/m(2) on day 1 and cladribine 0.1 mg/kg subcutaneously on days 2-6. The treatment was repeated every 4 weeks for a total of four cycles. Sixteen patients were pretreated. The overall response rate was 88% (50% complete remission and 38% partial remission). The median time to treatment failure was 37.9 months. Grade 4 neutropenia developed in 5% of patients. The data indicate that combination therapy with rituximab and cladribine is a valuable and safe treatment for patients with CLL.

Breast cancer and pregnancy: how safe is trastuzumab?

BACKGROUND: A 29-year-old woman was diagnosed with lymph-node-positive, steroid-hormone-receptor-negative and HER2/neu-positive breast cancer. She underwent surgery followed by cyclophosphamide, epirubicin, and 5-fluorouracil chemotherapy, and received radiotherapy followed by trastuzumab therapy for 1 year. During the tenth month of trastuzumab therapy, the patient reported a missed period and had a positive pregnancy test. INVESTIGATIONS: Physical examination, pregnancy test, echocardiography. DIAGNOSIS: Unintended pregnancy during adjuvant trastuzumab therapy. MANAGEMENT: Cessation of trastuzumab and close monitoring of mother and fetus during pregnancy.