The lived experiences of hematology healthcare providers during and beyond the COVID-19 crisis: A qualitative study.

OBJECTIVE: Amid the COVID-19 pandemic, healthcare providers (HCPs) of hematology patients face unique challenges due to the vulnerability of their patients. This study explores the lived experiences of these providers during and beyond the crisis. METHODS: Twenty-one Australian HCPs caring for hematology patients completed semi-structured interviews exploring their experiences and needs during the COVID-19 pandemic, adequacy of support and information provided by healthcare organizations, impact on hematology patients, and the benefits and challenges of telehealth care. Data were analyzed using reflexive thematic analysis. RESULTS: Four themes were identified: (1) Managing an initial state of flux (unsettling uncertainty and fear, unique needs of hematology patients, getting on with the job together); (2) Concerns about care provision (questioning care efficacy, burden of compassion); (3) Disconnect between HCP needs and system-level responses (burnout, isolation, and poor work-life balance, broadcast fatigue, protecting mental health), and; (4) Reflecting on the future (ongoing challenges for hematology patients, higher staff turnover and heavier workloads, innovation in the healthcare field). CONCLUSION: This study sheds light on the challenges that hematology HCPs face during and beyond the COVID-19 crisis, impacting their wellbeing. Addressing these challenges is paramount for the healthcare system at large. Provider-led peer support programs may be beneficial for addressing moral distress and building resilience. Additionally, specific consideration for the ongoing vulnerability of hematology patients could have positive impacts on providers' professional satisfaction.

Perspectives in preparedness of family caregivers of patients with cancer providing end-of-life care in the home: A narrative review of qualitative studies.

BACKGROUND: Many patients with advanced cancer identify home as being their preferred place of death. A critical component in achieving a home death is the support of family members, who often take on responsibilities for which they feel insufficiently prepared with subsequent impacts upon their health and well-being. OBJECTIVES: This study sought to review existing qualitative literature on family carers' experiences in providing end-of-life care at home for patients with advanced cancer, with an emphasis on exploring factors that influence how prepared they feel for their role. METHODS: A narrative review was chosen to provide an overview and analysis of qualitative findings. MEDLINE, PubMed, PsychINFO, and EMBASE databases were searched with the following search terms: "Cancer," "Caregiver," "End of Life Care," "Home," and "Qualitative." Inclusion criteria were as follows: English language, empirical studies, adult carers, and articles published between 2011 and 2021. Data were abstracted, and study quality was assessed using the Critical Appraisal Skills Programme checklist for qualitative research. RESULTS: Fourteen relevant articles were included. Three overarching themes reflecting the factors influencing family preparedness for their role were identified: "motivations for providing care," "interactions with health-care professionals," and "changes during the caring process." SIGNIFICANCE OF RESULTS: Inadequate preparation of family carers is apparent with regard to their role in providing end-of-life care at home for patients with advanced cancer. There is a need for health-care workers to more effectively identify the information and support needs of families, and utilize evidence-based strategies that have emerged to address these needs.

Factors associated with changes in healthy lifestyle behaviors among hematological cancer patients during the COVID-19 pandemic.

Background: There is a paucity of research examining the effects of the COVID-19 pandemic on the healthy lifestyle behaviors of hematological cancer patients. We examined changes in healthy lifestyle behaviors since the pandemic and identified factors associated with these changes among members of this high-risk population. Methods: Hematological cancer patients (n = 394) completed a self-report online survey from July to August 2020. The survey assessed pandemic-related changes in exercise, alcohol consumption, and consumption of fruit, vegetables, and wholegrains. Information relating to several demographic, clinical, and psychological factors was also collected. Factors associated with changes in healthy lifestyle behaviors were analyzed using logistic regression. Results: Just 14% of patients surveyed reported exercising more during the pandemic (39% exercised less). Only a quarter (24%) improved their diet, while nearly half (45%) reported eating less fruit, vegetables, and wholegrains. Just over a quarter (28%) consumed less alcohol (17% consumed more alcohol). Fear of contracting COVID-19 and psychological distress were significantly associated with reduced exercise. Younger age was significantly associated with both increased alcohol consumption and increased exercise. Being a woman was significantly associated with unfavorable changes in diet and being married was significantly associated with decreased alcohol consumption. Conclusion: A substantial proportion of hematological cancer patients reported unfavorable changes in healthy lifestyle behaviors during the pandemic. Results highlight the importance of supporting healthy lifestyle practices among this particularly vulnerable group to ensure health is optimized while undergoing treatment and when in remission, particularly during crisis times like the COVID-19 pandemic.

Palliative care facilitates the preparedness of caregivers for thoracic cancer patients.

OBJECTIVE: Palliative care improves outcomes for patients with thoracic cancer; however, limited evidence exists for the benefits of this approach for caregivers. This study aimed to advance understanding of the experiences of palliative care described by bereaved caregivers. METHODS: Fifteen adult caregivers completed semi-structured interviews following prior participation in a randomised controlled trial of early referral to palliative care versus discretionary referral to palliative care. Interviews explored caregiver experiences of palliative care delivery. Interview transcripts were thematically analysed. RESULTS: Four related themes about the experiences of palliative care were identified, each of which required sufficient time between palliative care first contact and death: 'relationship building'; 'clear communication and information'; 'access to practical support'; and 'access to psychosocial support'. The core category underpinning these themes was palliative care facilitates caregiver preparedness. Caregivers noted that palliative care played a critical role in preparing them for the future and described a sense of practical and emotional 'relief' associated with the support services made available to them. CONCLUSION: Our findings emphasise that palliative care can have a positive impact on caregivers' preparedness for providing the care needed by thoracic cancer patients and that this can improve the experiences of both caregivers and patients.

Telehealth access among hematology patients during the COVID-19 pandemic in Australia: a cross-sectional survey.

Hematology patients are more vulnerable to the effects of COVID-19 than patients with other cancers. We surveyed hematology patients to better understand their experiences of cancer care during the pandemic. A large reduction was observed in the number of healthcare services accessed by respondents. Telehealth assisted with access but requires improvement.

Experiences and needs of people with haematological cancers during the COVID-19 pandemic: A qualitative study.

OBJECTIVE: Haematological cancer patients are particularly vulnerable to the effects of COVID-19. In addition to being immunocompromised, pandemic-related travel restrictions have impacted access to treatments and overseas stem cell donations for patients requiring transplantation. Given this vulnerability, people with haematological cancers are at risk of experiencing heightened distress during the pandemic. This study aimed to explore haematological cancer patients' experiences and needs. METHODS: Twenty-four Australian haematological cancer patients completed semi-structured interviews exploring their concerns and worries during the pandemic, impact of pandemic on management of disease, access to information and support, lifestyle changes, and attitudes towards emerging models of healthcare during the pandemic. Interview transcripts were thematically analysed. RESULTS: Four themes reflecting the experiences of haematological cancer patients during the pandemic were identified: 'Fears about contracting COVID-19' (behaviour changes to protect health, impact on daily routine and habits, annoyance at dismissive attitude of others toward COVID-19); 'Reduced sense of connection and support' (reduced social support and access to external support services); 'New challenges' (increased financial hardship, worsened health), and; 'Underlying system and communication issues' (access to trusted information, satisfaction/dissatisfaction with care, navigating telehealth). Participants expressed a need for improved access to support services and trusted information. CONCLUSIONS: The findings emphasise the additional challenges experienced by haematological cancer patients during the COVID-19 pandemic and their impact on daily life. Results point to the importance of validation of increased distress during periods of uncertainty; reinforcing recommendations about high-quality sources of information; and facilitating access to support services when face-to-face care is limited.

Prevalence and correlates of psychological distress, unmet supportive care needs, and fear of cancer recurrence among haematological cancer patients during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic has had a disruptive effect on people with haematological cancers, who represent a high-risk population due to the nature of their disease and immunosuppressive treatments. We aimed to identify the psychological impacts of the COVID-19 pandemic on haematology patients and identify correlated factors to inform the development of appropriate supportive interventions. METHODS: Three hundred and ninety-four respondents volunteered their participation in response to a study advertisement distributed online through established haematology groups. Participants completed a self-report online survey exploring wellbeing, psychological distress, unmet supportive care needs, and fear of cancer recurrence. RESULTS: At least 1 in 3 respondents (35%) reported clinical levels of distress and nearly 1 in 3 (32%) identified at least one unmet need. Among respondents in remission (n = 134), clinical fear of cancer recurrence was reported by nearly all (95%). Unmet needs, pre-existing health conditions, younger age, financial concerns, and perceived risk of contracting COVID-19 were the dominant factors contributing to psychological distress during the pandemic. Psychological distress, lost income, perceived inadequate support from care team, perceived risk of contracting COVID-19, and being a woman were significantly associated with unmet needs. Psychological distress and concern about the impact of COVID-19 on cancer management were significantly associated with fear of cancer recurrence among respondents in remission. CONCLUSION: Results highlight the high psychological burden and unmet needs experienced by people with haematological cancers during the COVID-19 pandemic and indicate a need for innovative solutions to rapidly identify distress and unmet needs during, and beyond, pandemic times.

Experiences and unmet needs of family members requested to donate haematopoietic stem cells to an ill relative: findings from a prospective multi-centre study.

BACKGROUND: Despite well-documented physical effects of haematopoietic stem cell (HSC) donation, far less attention has been focused on the psychosocial impact for family donors. This study aimed to better understand the psychosocial aspects of HSC donation by family members, focusing, in particular on their needs for information and supportive care. METHODS: Thirty-one adult HSC family donors from two clinical hospitals were interviewed before, during and 1 month after HSC donation. Interviews explored ambivalence, motivation, perceived pressure, preparedness, the donor-recipient relationship, information and support received and suggestions for improvement. RESULTS: Three main themes about the donation experience were identified: 'call to arms' (focused on the recipient, stressful urgency, making meaning of being a donor, decisional ambivalence), 'proceeding with donation' (living in limbo, unsettling uncertainty, pervasive pain, feeling supported) and 'after the dust settles' (feeling discarded, downplaying role, residual symptoms, dealing with adverse recipient outcomes). Underlying system and communication issues included time for consideration prior to donor work-up, management of confidentiality, information inadequacy and access to support. Donors wanted information about the emotional challenges specific to being a family donor, such as ways in which previous donors coped with recipient death. For donors whose recipient had died, the priority for improved care was follow-up support. CONCLUSION: Our findings emphasise a gap in information and supportive care for family donors and the need for a protocol specifically designed to inform and support family donors before, during and after HSC donation.

Iodine status of non-pregnant women and availability of food vehicles for fortification with iodine in a remote community in Gulf province, Papua New Guinea.

Adequate iodine status of women of childbearing age is essential for optimal growth and development of their offspring. The objectives of the current study were to assess the iodine status of non-pregnant women, availability and use of commercial salt, extent to which it is iodised, and availability of other industrially processed foods suitable for fortification with iodine. This prospective cross-sectional study was carried out in 2018 in a remote area in Gulf province, Papua New Guinea. Multistage cluster sampling was used to randomly select 300 women visiting local markets. Of these, 284 met study criteria of being non-pregnant and non-lactating. Single urine samples were collected from each of them. Discretionary salt intake was assessed; salt samples were collected from a sub-sample of randomly selected households. A semi-structured, pre-tested questionnaire to assess use and availability of commercial salt and other processed foods was modified and used. Salt was available on the interview day in 51.6% of households. Mean iodine content in household salt samples was 37.8 ± 11.8 ppm. Iodine content was below 30.0 ppm in 13.1% and below 15.0 ppm in 3.3% of salt samples. Mean iodine content of salt available at markets was 39.6 ± 0.52 ppm. Mean discretionary intake of salt per capita per day was 3.9 ± 1.21 g. Median UIC was 34.0 µg/L (95% CI, 30.0-38.0 ppm), indicating moderate iodine deficiency. For women with salt in the household, median UIC was 39.5 µg/L (95% CI, 32.0-47.0 µg/L), compared to median UIC of 29.0 µg/L (95% CI, 28.0-32.0 µg/L) for those without salt. This community has low consumption of iodised salt, likely due to limited access. Investigation of other industrially processed foods indicated salt is the most widely consumed processed food in this remote community, although 39.8% of households did use salty flavourings.

Adult related haematopoietic stem cell donor care: Views of Transplant Nurses.

PURPOSE: The objective of this mixed-methods study was to explore the experiences and perspectives of Transplant Nurses (TNs) in caring for related donors (RDs). METHOD: In this mixed-methods study, both quantitative and qualitative data were collected from semi-structured interviews with seven TNs from two clinical hospitals. Closed and multiple-choice questions regarding the organisation of RD care were administered in addition to an in-depth exploration of TN experiences and perspectives of RD care. Interviews were audio-recorded, transcribed, and qualitative data was subjected to thematic analyses. RESULTS: The analysis identified 5 themes relating to RD care: managing complex family dynamics and ambivalence; concerns about RD psychological adjustment; identifying and correcting RD misperceptions; limited guidelines and structured processes; limited training for the role and access to supervision. Five themes were identified describing the barriers to delivering RD care: RDs unwilling to express their concerns; language; time constraints; medical priority of clinicians; biomedical focus of TNs. All TNs agreed they would like additional training in the psychosocial management of RDs. TNs identified key areas for improvement, including psychosocial support and educational material. CONCLUSIONS: Our results highlight the significant role of TNs in RD care, and underline issues specific to the current RD care environment. Lack of training for the role and limited guidelines addressing RD care management are key issues which may detrimentally affect RD care. The pivotal role of TNs must be acknowledged and supported by improving TN training and implementing clear guidelines for the management of RDs. The trial has been registered on the publicly accessible register: www.clinicaltrials.gov site with the identifier ACTRN12617000407392.

Phase I Trial of Inducible Caspase 9 T Cells in Adult Stem Cell Transplant Demonstrates Massive Clonotypic Proliferative Potential and Long-term Persistence of Transgenic T Cells.

PURPOSE: Inducible caspase 9 (iCasp9) is a cellular safety switch that can make T-cell therapy safer. The purpose of this phase I trial was to investigate the use of iCasp9-transduced T-cell addback in adult patients undergoing haploidentical stem cell transplantation for high-risk hematologic malignancies. PATIENTS AND METHODS: Patients undergoing myeloablative, CD34-selected haploidentical stem cell transplantation were treated with 0.5-1.0 × 106/kg donor-derived iCasp9-transduced T cells on day +25 or 26 post-transplant, with additional doses allowed for disease relapse, infection, or mixed chimerism. RESULTS: Three patients were enrolled. iCasp9-transduced T cells were readily detectable by 4 weeks post-infusion in all patients and remained at high level (114 cells/µL, 11% of T cells) in 1 patient alive at 3.6 years. One patient developed donor-derived Epstein-Barr virus-associated post-transplant lymphoproliferative disease (EBV-PTLD), which was followed by a marked expansion of iCasp9 T cells and cytokine release syndrome (CRS). These iCasp9-transduced T cells infiltrated the affected lymph nodes and secreted IFNγ and IL-10. They peaked at 1,848 cells/µL and were found to be monoclonal by T-cell receptor (TCR) clonotype and oligoclonal by viral integrant analysis, representing a 6-log in vivo expansion of the dominant T-cell clone. These T cells were not autonomous and contracted with the resolution of EBV-PTLD, which did not recur. CONCLUSIONS: iCasp9-transduced T cells could persist long-term. They retained very high in vivo clonotypic proliferative capacity and function, and could cause CRS in response to de novo lymphoma development.

Adult-related haematopoietic stem cell donor experiences and the provision of information and psychosocial support: A systematic literature review.

For blood cancer patients, haematopoietic stem cells (HSC) donated by a relative can be lifesaving. However, related donors can face significant physical and psychosocial challenges. As the demand for adult-related HSC donors is increasing, it is important to review our understanding of adult-related HSC donors' need for and availability of information and psychosocial support with a view to identifying gaps in the literature. A systematic review of relevant studies (2000-2017) was conducted using five databases with supplementary hand searching. Sixteen studies involving 1,024 related HSC donors met the following criteria: English or Dutch language, peer-reviewed, sampled first-time-related HSC donors, ≥18 years, haematological malignancies, assessed psychosocial aspects, retrospective or prospective and with or without comparison group. Data were abstracted, and study quality was assessed using the PRISMA criteria. Studies contained limited information on the provision of information and psychosocial support. Most studies addressed pre-donation information, and none reported providing information or support to donors post-donation. Additionally, few studies formally assessed unmet needs. Recommendations include improved transparency of reporting for the availability, sources and timing of information and psychosocial support, and the identification of unmet needs to enable the development of educational and psychosocial interventions for this invaluable donor population.

Iodine status of children and knowledge, attitude, practice of iodised salt use in a remote community in Kerema district, Gulf province, Papua New Guinea.

Iodine deficiency is the single most common cause of preventable mental impairment in communities with suboptimal iodine intake. Objective of the present study was to assess in more detail the iodine status and knowledge, attitudes and practice (KAP) relating to use of iodised salt in a remote community in Kotidanga area, Kerema district, Gulf province, Papua New Guinea. This prospective school and community based cross-sectional study was carried out in 2017. Simple random sampling was used to select schools. Multistage sampling was used to randomly select 300 children aged 6 to 12 years, of which 289 consented to participate in the study. A single urine sample was collected from each of the consenting children, as well as a salt sample from their households. Discretionary salt intake was assessed in a sub-sample of the children's households. Salt iodine content and urinary iodine concentration (UIC) were analysed. A semi-structured modified Food and Agriculture Organisation questionnaire was used to assess KAP of three different community groups. Only 64% of households had salt on the day of data collection. Mean iodine content in household salt samples was 29.0 ± 19.1 ppm. Iodine content was below 30.0 ppm in 54.8% and below 15.0 ppm in 31.2% of salt samples. Mean per capita discretionary intake of household salt was 2.9 ± 1.8 g/day. Median UIC was 25.5 µg/L and Interquartile Range was 15.0 to 47.5 µg/L, indicating moderate status iodine nutrition. Median UIC was 34.3 µg/L for children in households with salt, compared to 15.5 µg/L for children in households without salt, indicating severe iodine deficiency in the latter group. The three community groups had limited knowledge about importance of using iodised salt and consequences of iodine deficiency on health outcomes. This remote community has limited access to adequately iodised household salt due to high cost, inappropriate packaging, storage and food preparation, resulting in iodine deficiency. Strategies to increase iodine intake are needed.

Granulocytes Are Unresponsive to IL-6 Due to an Absence of gp130.

IL-6 mediates broad physiological and pathological effects through its receptor signal transducing unit gp130. Due to the reportedly wide cellular expression of gp130, IL-6 is thought to signal ubiquitously via gp130 complex formation with membrane-bound IL-6Rα or soluble IL-6Rα. gp130 signaling primarily induces p-STAT3 and p-STAT1. In contrast to the previous dogma, we show in this article that circulating mouse and human granulocytes are unable to induce p-STAT3 or p-STAT1 after stimulation with IL-6 or an IL-6/soluble IL-6R complex. Furthermore, we demonstrate that this is due to a lack of gp130 expression on mouse and human granulocytes, despite their expression of membrane-bound IL-6R. Importantly, the absence of gp130 is not only a feature of mature granulocytes in healthy individuals, it is also observed after allogeneic stem cell transplantation. Moreover, granulocyte gp130 expression is lost during maturation, because granulocyte-monocyte progenitor cells express gp130 and respond to IL-6. Given that granulocytes constitute 50-70% of circulating leukocytes, this indicates a significantly smaller scope of IL-6 signaling than previously anticipated and has important implications for therapeutic IL-6 inhibition and the mechanisms of action thereof.

Early Blood Stream Infections after BMT are Associated with Cytokine Dysregulation and Poor Overall Survival.

The key complications of allogeneic bone marrow transplantation (BMT) remain graft-versus-host disease (GVHD) and opportunistic infection. We have analyzed the blood stream infections (BSIs) occurring between day -7 and day 100 in a cohort of 184 adult patients undergoing allogeneic BMT in our center. A total of 167 of the 184 patients (91%) had blood cultures collected, and 69 (38%) patients had a confirmed BSI. Enterobacteriaceae, Pseudomonas aeruginosa, Enterococcus spp., and viridans Streptococcus spp. were the most commonly isolated organisms. Gender, conditioning (myeloablative versus reduced intensity), and donor type (sibling versus unrelated) did not differ significantly between those with and without confirmed BSI. Elevated temperature (>38°C) at the time of culture collection was associated with an almost 2-fold increased likelihood of returning a positive blood culture. The absence of a BSI was associated with a significant improvement in overall survival at 2 years, due to a significant reduction in nonrelapse mortality predominantly unrelated to the primary BSI. The presence of a BSI before engraftment was associated with the dysregulation of IL-6 and IL-8. Our findings suggest that BSI early after BMT defines a group of high-risk patients with enhanced cytokine dysregulation and poor transplant outcome.

Nutritional status and dietary diversity of Kamea in Gulf Province, Papua New Guineas.

BACKGROUND AND OBJECTIVES: To assess the nutritional status of infants, children and non-pregnant women and underlying factors, dietary diversity and community food security, in the Kamea community in Gulf Province, Papua New Guinea. METHODS AND STUDY DESIGN: Prospective cross sectional study. Study population 69 infants (0-59 months), 151 children (6-12 years) and 79 non-pregnant women from 10 villages in Kotidanga Local Level Government, Kerema District, Gulf Province, Papua New Guinea. RESULTS: Among infants prevalence of moderate stunting, wasting and underweight were 38.9%, 8.3% and 44.4%, respectively; after adjusting Hb concentration for altitude, the anaemia prevalence was 53.8%. Among children prevalence of severe stunting was 21.2%; moderate stunting, wasting and underweight were 57.6%, 12.2% and 48.5%, respectively; anaemia was 30.3%; median urinary iodine concentration was 32.0 µg/L and iodine deficiency was prevalent among 88.1%. Among women, mean height, weight and BMI were 1.46±0.04 m, 43.9±5.91 kg and 20.4±2.32 kg/m2, respectively; low BMI (<18.5 kg/m2) and anaemia were prevalent among 22.8% and 35.4%, respectively; median urinary iodine concentration was 36.0 µg/L and iodine deficiency was prevalent among 80.3%. Exclusive breastfeeding was universal for young infants; complementary foods were limited in variety and frequency. Dietary diversity was limited, implementation of the universal salt iodisation strategy restricted and community food security was inadequate. CONCLUSIONS: The high prevalence of malnutrition and anaemia among the three age groups, including moderate status of iodine deficiency among women and children, are significant public health concerns. Improvements in dietary diversity, adequate use of iodised salt and community food security are needed.