Integrating genomics into the care of people with palliative needs: A global scoping review of policy recommendations

BACKGROUND: Genomics has growing relevance to palliative care, where testing largely benefits relatives. Integration of genomics into the care of patients with palliative care needs has not received the critical attention it requires, and health professionals report a lack of policy guidance to support them to overcome practice barriers. SUMMARY: To identify policy recommendations related to: (1) integrating genomics into the care of patients with palliative care needs and their families, and (2) care of the family unit, we performed a scoping review of palliative care and genomic policies. Two of 78 policies recommended integrating genomics into palliative care. Six palliative care policies mentioned genomics in background information but were without relevant recommendations. No genomics policies mentioned palliative care in the background information. Across all policies, guidance related to “Delivering Family-Centred Care” was the most frequent recommendation related to care of the family unit, (n=62/78, 79.5%). KEY MESSAGES: We identified a policy gap related to integrating genomics into palliative care. Without policy guidance, health services are less likely to commit funding towards supporting health professionals, reducing the personal and clinical benefits of genomics to patients and relatives. Framing genomic information as family-centred care enables policy makers to communicate the value of genomics to palliative care that will resonate with genomic and palliative care stakeholders. These findings increase awareness among policy makers of the benefits of genomic information to patients with palliative care needs and their families and call for incorporation of appropriate recommendations into palliative care and genomic policy

Increasing frailty is associated with higher prevalence and reduced recognition of delirium in older hospitalised inpatients: results of a multi-centre study

Purpose: Delirium is a neuropsychiatric disorder delineated by an acute change in cognition, attention, and consciousness. It is common, particularly in older adults, but poorly recognised. Frailty is the accumulation of deficits conferring an increased risk of adverse outcomes. We set out to determine how severity of frailty, as measured using the CFS, affected delirium rates, and recognition in hospitalised older people in the United Kingdom. Methods: Adults over 65 years were included in an observational multi-centre audit across UK hospitals, two prospective rounds, and one retrospective note review. Clinical Frailty Scale (CFS), delirium status, and 30-day outcomes were recorded. Results: The overall prevalence of delirium was 16.3% (483). Patients with delirium were more frail than patients without delirium (median CFS 6 vs 4). The risk of delirium was greater with increasing frailty [OR 2.9 (1.8–4.6) in CFS 4 vs 1–3; OR 12.4 (6.2–24.5) in CFS 8 vs 1–3]. Higher CFS was associated with reduced recognition of delirium (OR of 0.7 (0.3–1.9) in CFS 4 compared to 0.2 (0.1–0.7) in CFS 8). These risks were both independent of age and dementia. Conclusion: We have demonstrated an incremental increase in risk of delirium with increasing frailty. This has important clinical implications, suggesting that frailty may provide a more nuanced measure of vulnerability to delirium and poor outcomes. However, the most frail patients are least likely to have their delirium diagnosed and there is a significant lack of research into the underlying pathophysiology of both of these common geriatric syndromes

Registered Nurses\u27 attitudes towards end-of-life care: A sequential explanatory mixed method study

Aims: To examine registered nurses\u27 attitudes about end-of-life care and explore the barriers and facilitators that influence the provision of high-quality end-of-life care. Design: A sequential explanatory mixed methods research design was used. Methods: An online cross-sectional survey was distributed to 1293 registered nurses working in five different hospitals in the Kingdom of Saudi Arabia. The Frommelt Attitudes Towards Care of the Dying Scale was used to assess nurses\u27 attitudes towards end-of-life care. Following the survey, a subset of registered nurses were interviewed using individual semi-structured interviews. Results: Four hundred and thirty-one registered nurses completed the online survey, and 16 of them participated in individual interviews. Although nurses reported positive attitudes towards caring for dying patients and their families in most items, they identified negative attitudes towards talking with patients about death, their relationship with patients\u27 families and controlling their emotions. The individual interview data identified the barriers and facilitators that registered nurses experience when providing end-of-life care. Barriers included a lack of communication skills and family and cultural and religious resistance to end-of-life care. The facilitators included gaining support from colleagues and patients\u27 families. Conclusion: This study has identified that while registered nurses hold generally favourable attitudes towards end-of-life care, they have negative attitudes towards talking with patients and families about death and managing their emotional feelings. Relevance to clinical practice: Education providers and leaders in healthcare settings should consider developing programmes for undergraduate nurses and nurses in clinical practice to raise awareness about the concept of death in a cross-section of cultures. Nurses\u27 attitudes towards dying patients will be enhanced with culture-specific knowledge which will also enhance communication and coping methods. Reporting method: This study used the Mixed Methods Article Reporting Standards (MMARS)

Registered Nurses' beliefs about end‐of‐life care: A mixed method study

Abstract Aims To examine registered nurses' (RNs) behavioural, normative and control beliefs about end‐of‐life care for patients who are diagnosed with advanced and life‐limiting illnesses; and to identify the barriers and facilitators they experience when providing end‐of‐life care. Design A sequential explanatory mixed methods study. Method An online cross‐sectional survey was conducted using the Care for Terminally Ill Patient tool among 1293 RNs working across five hospitals in the Kingdom of Saudi Arabia. Online individual semi‐structured interviews with a subgroup of survey respondents were then undertaken. Data were collected between October 2020 to February 2021. Results A total of 415 RNs completed the online survey, with 16 of them participating in individual interviews. Over half of the participants expressed the belief that end‐of‐life care is most efficiently delivered through multidisciplinary team collaboration. The majority of participants also believed that discussing end‐of‐life care with patients or families leads to feelings of hopelessness. Paradoxically, the study revealed that more than half of the participants held the negative belief that patients at the end of life should optimally receive a combination of both curative and palliative care services. The results showed that nurses' beliefs were significantly associated with their age, religion, ward type, level of education and frequency of providing end‐of‐life care. Data from the qualitative interviews identified four themes that explored RNs' beliefs and its related factors. The four themes were ‘holistic care’, ‘diversity of beliefs’, ‘dynamics of truth‐telling’ and ‘experiences of providing end‐of‐life care.’ Implications for the Profession and/or Patient Care Wherever possible, patients at the end‐of‐life should be cared for in specialist settings by multidisciplinary teams to ensure effective, high‐quality care. Where this is not possible, organisations should ensure that teams of multidisciplinary staff, including nurses, receive education and resources to support end‐of‐life care in non‐specialist settings. Hospitals that employ foreign‐trained nurses should consider providing targeted education to enhance their cultural competence and reduce the impact of different beliefs on end‐of‐life care

Healthcare Resource Utilization and Cost Associated with Allogeneic Hematopoietic Stem Cell Transplantation: A Scoping Review

This scoping review summarizes the evidence regarding healthcare resource utilization (HRU) and costs associated with allogeneic hematopoietic stem cell transplantation (allo-HSCT). This study was conducted in accordance with the Joanne Briggs Institute methodology for scoping reviews. The PubMed, Embase, and Health Business Elite Electronic databases were searched, in addition to grey literature. The databases were searched from inception up to November 2022. Studies that reported HRU and/or costs associated with adult (≥18 years) allo-HSCT were eligible for inclusion. Two reviewers independently screened 20% of the sample at each of the 2 stages of screening (abstract and full text). Details of the HRU and costs extracted from the study data were summarized, based on the elements and timeframes reported. HRU measures and costs were combined across studies reporting results defined in a comparable manner. Monetary values were standardized to 2022 US Dollars (USD). We identified 43 studies that reported HRU, costs, or both for allo-HSCT. Of these studies, 93.0% reported on costs, 81.4% reported on HRU, and 74.4% reported on both. HRU measures and cost calculations, including the timeframe for which they were reported, were heterogeneous across the studies. Length of hospital stay was the most frequently reported HRU measure (76.7% of studies) and ranged from a median initial hospitalization of 10 days (reduced-intensity conditioning [RIC]) to 73 days (myeloablative conditioning). The total cost of an allo-HSCT ranged from $63,096 (RIC) to$782,190 (double umbilical cord blood transplantation) at 100 days and from $69,218 (RIC) to$637,193 at 1 year (not stratified). There is heterogeneity in the reporting of HRU and costs associated with allo-HSCT in the literature, making it difficult for clinicians, policymakers, and governments to draw definitive conclusions regarding the resources required for the delivery of these services. Nevertheless, to ensure that access to healthcare meets the necessary high cost and resource demands of allo-HSCT, it is imperative for clinicians, policymakers, and government officials to be aware of both the short- and long-term health resource requirements for this patient population. Further research is needed to understand the key determinants of HRU and costs associated with allo-HSCT to better inform the design and delivery of health care for HSCT recipients and ensure the quality, safety, and efficiency of care

Predictors of post traumatic growth in allogeneic hematopoietic stem cell transplantation survivors: a cross-sectional survey

Abstract Aims Given the increasing number of Hematopoietic Stem Cell Transplantations (HSCT) performed world-wide, the increasing likelihood of survival following HSCT, and the profound physical, psychosocial, and emotional impact of HSCT on survivors, their carers and families, it is important to identify factors that may contribute to or support post-traumatic growth (PTG) after transplant. In this study, we aimed to investigate the prevalence of PTG in an Australian cohort of long-term allogeneic HSCT survivors and describe associations between PTG and relevant clinical, sociodemographic and psychological variables. Methods This was a large, multi-centre, cross sectional survey of Australian HSCT-survivors inviting all those transplanted in New South Wales between 2000 and 2012. Respondents completed the PTG Inventory (PTGI), the Sydney Post-BMT Survey, FACT-BMT, DASS 21, The Chronic Graft versus Host Disease (GVHD) Activity Assessment–Patient Self-Report (Form B), the Lee Chronic GVHD Symptom Scale, and the Fear of Cancer Recurrence Scale. Data was analysed using independent t-tests, one-way analysis of variance, and pearson’s correlations, and hierarchical multiple regression adjusted for potential confounders and to ascertain independent associations of explanatory variables with PTG. Results Of 441 respondents, 99% reported some level of PTG with 67% reporting moderate to high levels of PTG. Female gender, younger age, complementary therapy use, anxiety, psychological distress and psychosocial care, and higher quality of life were associated with higher levels of PTG. Importantly, we also found that PTG was not associated with either chronic GVHD or post-HSCT morbidity. Conclusions In this study – the largest study of PTG in long-term allogeneic HSCT survivors - we found that growth appears ubiquitous, with 99% of survivors reporting some degree of PTG and 67% reporting moderate-high levels of PTG. Importantly, we found no association with GVHD or chronic physical post-HSCT morbidity, or adverse financial, occupational or sexual impacts. This suggests that it is the necessity for and experience of, HSCT itself that foments personal growth. Accordingly, healthcare professionals should be alert to the profound and wide-ranging impact of HSCT - and the degree to which survivor’s may experience PTG. Identifying interventions that may assist HSCT survivors cope and building their resilience is of utmost importance

Decisional Regret in Long-Term Australian Allogeneic Hematopoietic Stem Cell Transplantation Survivors: A Cross-Sectional Survey

Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is an intensive but effective treatment for malignant and non-malignant diseases. However, long-term survival often comes at a cost, with survivors experiencing chronic morbidity and are at risk of relapse and secondary malignancy. This study aimed to describe decisional regret in a large cohort of Australian long-term allo-HSCT survivors. A cross-sectional survey was conducted with 441 adults in New South Wales, assessing quality of life (QoL), psychological, social, demographic, and clinical variables. Less than 10% of survivors expressed regret, with chronic graft-versus-host disease being the most important clinical factor. Psycho-socioeconomic factors such as depression, lower QoL scores, lower household income, higher treatment burden, and not resuming sex post-HSCT were also associated with regret. Findings highlight the need for valid informed consent and ongoing follow-up and support for allo-HSCT survivors dealing with life post-transplant. Nurses and healthcare professionals play a critical role in addressing decisional regret in these patients