Children with palliative care needs - the landscape of the nordic countries.

BACKGROUND: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research collaboration initiative for children with palliative care needs was assembled in 2023. Building on this initiative, this paper presents an overview of pediatric palliative care (PPC) in the Nordic countries' (a) population characteristics, (b) care models and setting of care, (c) education and training, and (d) research. METHODS: The Nordic initiative researchers collaboratively gathered and assessed available data on the characteristics of PPC within Denmark, Finland, Greenland, Iceland, Norway, the Faroe Islands, Sweden, and Åland. Data were compiled in a matrix with population characteristics, models- and setting of care, education and training, and areas of research in a Nordic context. The findings are narratively and descriptively presented, providing an overview of Nordic PPC. RESULTS: In total, the Nordic child population comprises around six million children (0-19 years), of which about 41.200 are estimated to be living with a life-limiting and/or life-threatening condition. Healthcare services are provided through various care models, ranging from specialized care to homecare settings. Overall, there remain few opportunities for education and training with some exceptions. Also, Nordic research within PPC has been shown to be a growing field although much remains to be done. CONCLUSION: This overview is the first outline of the current PPC in Nordic countries. Although some differences remain important to acknowledge, overall, the strengths and challenges faced within PPC in the Nordic countries are comparable and call for joint action to increase evidence, services, and education to better serve the children, families, and healthcare personnel within PPC. Despite the varying structural premises for PPC, research endeavors aiming to provide evidence in this field seem increasing, timely and relevant for the Nordic countries, as well as the international context.

Home symptom management training programme: carer evaluation.

OBJECTIVES: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers' confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines. METHODS: Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview. RESULTS: Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role; (2) the importance of a layered approach to support; and (3) avoiding perceived unnecessary contact with nurses. CONCLUSION: The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home.

Cross-cultural adaptation and psychometric validation of point-of-care outcome assessment tools in Chinese palliative care clinical practice.

BACKGROUND: A standardized national approach to routinely assessing palliative care patients helps improve patient outcomes. However, a quality improvement program-based on person centered outcomes within palliative care is lacking in Mainland China. The well-established Australian Palliative Care Outcome Collaboration (PCOC) national model improves palliative care quality. This study aimed to culturally adapt and validate three measures that form part of the PCOC program for palliative care clinical practice in China: The PCOC Symptom Assessment Scale (PCOC SAS), Palliative Care Problem Severity Scale (PCPSS), Palliative Care Phase. METHODS: A study was conducted on cross-cultural adaptation and validation of PCOC SAS, PCPSS and Palliative Care Phase, involving translation methods, cognitive interviewing, and psychometric testing through paired assessments. RESULTS: Cross-cultural adaptation highlighted the need to strengthen the link between the patient's care plan and the outcome measures to improve outcomes, and the concept of distress in PCOC SAS. Analysis of 368 paired assessments (n = 135 inpatients, 22 clinicians) demonstrated that the PCOC SAS and PCPSS had good and acceptable coherence (Cronbach's a = 0.85, 0.75 respectively). Palliative Care Phase detected patients' urgent needs. PCOC SAS and PCPSS showed fair discriminant and concurrent validity. Inter-rater reliability was fair for Palliative Care Phase (k = 0.31) and PCPSS (k = 0.23-0.30), except for PCPSS-pain, which was moderate (k = 0.53). CONCLUSIONS: The Chinese version of PCOC SAS, PCPSS, and Palliative Care Phase can be used to assess outcomes as part of routine clinical practice in Mainland China. Comprehensive clinical education regarding the assessment tools is necessary to help improve the inter-rater reliability.

Family Members' Engagement in Symptom Communication, Assessment, and Management in the Intensive Care Unit: A Qualitative Study.

BACKGROUND: Opportunities for communication and participation in decision making are limited for critically ill patients, but family members serving as surrogates enable empowerment of these patients. OBJECTIVE: The aim of this study was to explore family members' engagement in symptom communication in the intensive care unit. METHODS: A qualitative descriptive design using fieldwork methodology with triangulation of participant observation and individual interviews was conducted. Nine mechanically ventilated patients were observed in interaction with family members and clinicians in the intensive care unit. Six of the observed patients, 6 family members, and 9 clinicians were interviewed after participant observation. Field notes and transcripts were analyzed using Braun and Clarke's method of thematic analysis. RESULTS: Family members engaged actively in symptom communication, assessment, and management, and there were barriers and facilitators to family engagement. Three main themes and 9 subthemes describing family engagement emerged: (1) intermediary role (recognize and report symptoms, provide patient information, and assist in communication), (2) independent role (provide familiarity, manage symptoms, and promote patient communication), and (3) conditions for family engagement (intensive care unit environment, relationship with the patient, and patient preferences). DISCUSSION: Family members have unique knowledge of the patient that differs from and complement the competence of the staff, and might contribute to improved symptom communication. Future research should examine how family members can contribute to symptom communication, assessment, and management.

Evaluating the effectiveness of a clinical nurse specialist triage role in a specialist palliative care community service.

BACKGROUND: In 2017, a clinical nurse specialist (CNS) triaging role was created within a specialist palliative care community service (SPCCS) in Ireland to enhance the triage process. The aim of this study is to evaluate the effectiveness of the role regarding data collection and reporting. Structured feedback from healthcare professionals (HCPs) was obtained on the effects, challenges and sustainability of this role. METHODS: This study used a mixed-methods approach. A quantitative analysis of referrals triaged by the SPCCS CNS over 2 years (2018-2019) was performed. Two focus groups with HCP's within the same service were completed in January 2020 and one-to-one interviews were conducted. The quantitative and qualitative results were merged using a triangulation protocol. RESULTS: In 2017, new health service executive (HSE) standards to categorise the urgency of patient assessment were introduced. Quantitatively, an improvement within the triage process was seen, with an increase in compliance with national access standards. In 2018, compliance was 89.1%. In 2019, this was 96.8%, an improvement of 7.7%. A data discrepancy of 9.5% of referrals was noted over the first 9 months of 2018. After this, data documentation and congruency were seen to improve for the final 3 months of 2018 to 100% and remained at 100%. Qualitative data highlighted the benefits and challenges of the Triage CNS role. Mixed-methods correlation revealed corroboration between both using a triangulation protocol. CONCLUSION: The triage CNS role was pivotal as an initial point of referral contact. Increased compliance with national access standards occurred resulting in improvements in case and case-load management, information gathering, documentation, data collection and analysis.

Palliative Medicine Fellows' Discussions, Perceptions, and Training Regarding Medical Cannabis.

CONTEXT: Medical cannabis is increasingly considered for palliation of pain, nausea/vomiting, anorexia, and other symptoms. OBJECTIVES: We aimed to determine whether training in hospice and palliative medicine (HPM) adequately prepares fellows to counsel patients about medical cannabis. METHODS: A previously validated questionnaire was adapted for HPM fellows. Domains included fellows' practices recommending cannabis and their knowledge of its effectiveness and risks compared with standard treatments. U.S. HPM fellowships were sent surveys in 2022 and 2023. RESULTS: Forty six programs participated, 123 fellows responded (response rate of 42%) including 69% female; 55% White, and 28% Asian. Of respondents, 65% reported receiving formal training regarding medical cannabis; 57% reported discussing medical cannabis with over five patients; 23% recommended medical cannabis to more than five patients in the preceding year. Only 19%, however, felt sufficiently informed to issue cannabis-related recommendations. HPM fellows with prior training were not more likely to feel sufficiently informed to discuss cannabis (RR: 1.17; 95% CI: 0.82-1.66) or to recommend cannabis to patients (RR: 2.05, 95% CI: 0.89-4.71). Fellows rate cannabis as equally or more effective than conventional treatments for the following symptoms: anorexia/cachexia (63%), nausea/vomiting (43%), pain (25%), and neuropathic pain (21%). CONCLUSION: Most HPM fellows report formal training in the use of medical cannabis. Over half of trainees reported discussing medical cannabis with patients, but few considered themselves sufficiently informed to make cannabis-related clinical recommendations. These results suggest both a need for expanded high-quality evidence for medical cannabis in palliative care and for improved formal education for HPM fellows.

Exploring the effects of acceptable palliative care models on survival time and healthcare expenditure among patients with cancer: a national longitudinal population-based study.

OBJECTIVE: Hospice care ensures better end-of-life quality by relieving terminal symptoms. Prior research has indicated that hospice care could prolong survival and reduce end-of-life medical expenditures among patients with cancer. However, the dearth of studies on the effects of hospice care type and use sequence on survival time and end-of-life medical expenditures substantiates the need for investigation. DATA SOURCES AND STUDY SETTING: Two million random records were obtained from the National Health Insurance Research Database. STUDY DESIGN: We estimated the effects of the type and sequence of hospice care use on survival time and medical expenditures among advanced cancer patients. This was a cross-sectional study. DATA COLLECTION/EXTRACTION METHODS: Patient data were collected from 2 million random records provided by the National Health Insurance Research Database of Taiwan. We included people with cancer and excluded patients under 20 years of age; 2860 patients remained after matching. PRINCIPAL FINDINGS: The results indicated that the average survival time of patients who received inpatient palliative care (1022 days) was significantly shorter than that of patients who did not receive palliative care (P < 0.001), but the health care expenditure during the entire course of cancer therapy was not the lowest. Interestingly, patients who received inpatient palliative care had the lowest health care expenditure at 1 year or month before the end of life (P < 0.001). CONCLUSION: The type and sequence of palliative care affected the survival time and health care expenditures of cancer patients. Receiving palliative care did not prolong survival but rather reduced health care expenditures. The sequence of receiving palliative care significantly affected health care expenditures.

Implementation of remote home care: assessment guided by the RE-AIM framework.

BACKGROUND: Welfare technology interventions have become increasingly important in home-based palliative care for facilitating safe, time-efficient, and cost-effective methods to support patients living independently. However, studies evaluating the implementation of welfare technology innovations are scarce, and the empirical evidence for sustainable models using technology in home-based palliative care remains low. This study aimed to report on the use of the Reach Effectiveness Adoption Implementation Maintenance (RE-AIM) framework to assess the implementation of remote home care (RHC) a technology-mediated service for home-living patients in the palliative phase of cancer. Furthermore, it aimed to explore areas of particular importance determining the sustainability of technologies for remote palliative home-based care. METHODS: A secondary analysis of data collected by semi-structured interviews with patients with cancer in the palliative phase, focus groups, and semi-structured interviews with healthcare professionals (HCPs) experienced with RHC was performed. A deductive reflexive thematic analysis using RE-AIM dimensions was conducted. RESULTS: Five themes illustrating the five RE-AIM dimensions were identified: (1) Reach: protective actions in recruitment - gatekeeping, (2) Effectiveness: potential to offer person-centered care, (3) Adoption: balancing high touch with high tech, (4) Implementation: moving towards a common understanding, and (5) Maintenance: adjusting to what really matters. The RE-AIM framework highlighted that RHC implementation for patients in the palliative phase of cancer was influenced by HCP gatekeeping behavior, concerns regarding abandoning palliative care as a high-touch specialty, and a lack of competence in palliative care. Although RHC facilitated improved routines in patients' daily lives, it was perceived as a static service unable to keep pace with disease progression. CONCLUSIONS: A person-centered approach that prioritizes individual needs and preferences is necessary for providing optimal care. Although technologies such as RHC are not a panacea, they can be integrated as support for increasingly strained health services.

Evidence-Based Pain Assessment in Nonverbal Palliative Care Patients.

BACKGROUND: Central to palliative care is the early assessment and treatment of pain, whether physical, psychosocial, or spiritual. Nonverbal palliative care patients are at risk for inadequate pain assessment leading to prolonged suffering. AIMS: The purpose of this project was to implement and evaluate an evidence-based pain assessment tool for nonverbal palliative care patients. DESIGN: The Iowa Model Revised: Evidence-Based Practice to Promote Excellence in Healthcare and the Implementation Strategies for Evidence-Based Practice Guide provided the guiding frameworks. SETTINGS: On a six-bed adult inpatient Palliative Care Unit (PCU). PARTICIPANTS/SUBJECTS: Nonverbal palliative care patients. METHODS: Evidence supported use of the Multidimensional Objective Pain Assessment Tool (MOPAT) for nonverbal patients receiving palliative care. During an eight-week pilot, nurses recorded pain assessments on a paper form and trended pain scores over a 24-hour period. Evaluation included knowledge, attitudes, and behaviors pre- and post-pilot and was subsequently used in a Precision Implementation Approach to promote adoption. RESULTS: Nurses' attitudes toward palliative care pain assessment improved in all items on the evaluation tools. Pain was assessed using MOPAT for 74% of nonverbal palliative care patients and 88% of patients had linked pain interventions to MOPAT scores. CONCLUSIONS: MOPAT is the only valid evidence-based pain assessment tool for nonverbal patients receiving palliative care. This project led to successful adoption of the MOPAT within the PCU.

Financial toxicity and its implication on quality of life in patients attending the palliative care department in a regional cancer centre: An observational study.

In India the cancer burden for 2021 was 26.7 million disability-adjusted life years (DALYs), and this is expected to increase to 29.8 million in 2025 (Kulothungan et al., 2022). According to the World Health Organisation (WHO), cancer is a leading cause of death worldwide, accounting for one in six deaths. As per WHO, palliative care is a strategy that assists both adults and children along with their families in dealing with life-threatening illnesses. Currently, only 14% of those in need of pain and palliative (P&P) care receive it globally (WHO, 2020). Financial toxicity (FT) is the term used to describe the negative effects that an excessive financial burden resulting from cancer have on patients, their families, and society (Desai and Gyawali, 2020). Addressing this gap will require significant adjustments to both demand- and supply-side policies to ensure accessible and equitable cancer care in India (Caduff et al., 2019). Measuring FT along with health-related quality of life (HRQoL) represents a clinically relevant and patient-centred approach (de Souza et al., 2017). AIM AND OBJECTIVE: To estimate FT and its association with quality of life (QoL). MATERIALS AND METHODS: This was an observational descriptive study conducted among cancer patients recommended for P&P care. Scores were estimated from September 2022 to February 2023 using official tools: the Functional Assessment for Chronic illness Treatment Compressive Score for Financial Toxicity (FACIT-COST) and the European Organisation for Research and Treatment of Cancer (EORTC) Quality of life Questionnaires for Cancer (QLQ30). RESULTS: From 150 patients (70 males and 80 females, mean age 54.96 ± 13.5 years), 92.6% suffered from FT. Eleven patients (7.3%) were under FT grade 0, 41 (27.3%) were FT grade 1, 98 (65.3%) were FT grade 2, and no patients were under FT grade 3. At criterial alpha 0.05 (95%CI), FT and the global score for HRQoL showed an association. Among inpatient department (IPD) expenses, medication bills contributed the greatest expense at 33%, and among outpatient department (OPD) expenses treatment expenses contributed 50% of the total. Breast cancer (30 cases, 20%) and oral cancer (26 cases, 17.3%) were the most frequent cancers. CONCLUSION: FT measured using the COST tool showed an association with HRQoL. POLICY SUMMARY: This paper refers to the insurance policies available for cancer patients irrespective of P&P care treatment.

A Systematic Scoping Review on Dignity Assessment Tools.

CONTEXT: The provision of person-centered dignity-conserving care is central to palliative care. It is important to reevaluate current methods of assessing dignity as the concept of dignity is multifaceted. OBJECTIVES: The aim of this study is to understand the tools which are used to assess a patient's dignity and the elements of dignity evaluated in these tools. METHODS: Two independent and concurrent Systematic Evidence-Based Approach guided systematic scoping reviews (SSR in SEBA) on existing dignity assessment tools and on accounts of assessments of dignity were carried out. The SSR in SEBA on dignity assessment tools involving PubMed, Embase, PsycINFO, Cochrane Database of Systematic Reviews, Scopus, and CINAHL databases saw 22 full-text articles included from the 645 articles reviewed. The SSR in SEBA on accounts of assessments of dignity featured in the PubMed database identified 102 full-text articles which saw 46 articles included. RESULTS: The domains identified were factors affecting patients' definition of dignity; elements of dignity-conserving care; and components of effective tools. CONCLUSION: Current accounts to assess dignity and assessment tools fail to capture shifting self-concepts of dignity holistically. A portfolio-like appraisal of dignity is proposed to achieve assessments that are timely, longitudinal, and patient-specific. Portfolio-based assessments by members of the multidisciplinary team will better direct timely evaluations of relevant aspects of changing concepts of dignity, without losing the patient's holistic perception of dignity.

Increased preparedness for caregiving among family caregivers in specialized home care by using the Carer Support Needs Assessment Tool Intervention.

OBJECTIVES: Family caregivers often feel insufficiently prepared for a caregiving role, experiencing challenges and demands related to care at home that may negatively affect their own quality of life. Supportive interventions have been shown to influence negative effects, but more studies are needed. Therefore, this study aims to explore potential effects of the Carer Support Needs Assessment Tool Intervention on preparedness, caregiver burden, and quality of life among Swedish family caregivers in specialized home care. METHODS: The study had a pre-post intervention design and was conducted at 6 specialized home care services in Sweden. Family caregivers who received the intervention completed a questionnaire, including the Preparedness for caregiving scale, Caregiver Burden Scale, and Quality of Life in Life-Threatening Illness - Family carer version, at 2 time points, baseline and follow up, about 5 weeks later. Data were analyzed using descriptive statistics and Wilcoxon signed-rank test. RESULTS: Altogether, 33 family caregivers completed the baseline and follow-up assessment. A majority were retired (n = 26, 81%) and women (n = 19, 58%) and two-fifths had a university degree (n = 13, 41%). The family caregivers had significantly increased their preparedness for caregiving between the baseline and follow-up assessment (Mdn = 18 vs. 20, p = 0.002). No significant changes were found on caregiver burden or quality of life. SIGNIFICANCE OF RESULTS: The results add to knowledge regarding the Carer Support Needs Assessment Tool Intervention's potential to improve family caregiver outcomes. Findings suggest that the intervention may be used to improve the preparedness for caregiving and support among family caregivers in specialized home care.

Community perspectives on structural barriers to dying well at home in Canada.

OBJECTIVES: To analyze how structural determinants and barriers within social systems shape options for dying well at home in Canada, while also shaping preferences for dying at home. METHODS: To inform a descriptive thematic analysis, 24 Canadian stakeholders were interviewed about their views, experiences, and preferences about dying at home. Participants included compassionate community advocates, palliative care professionals, volunteers, bereaved family caregivers, residents of rural and remote regions, service providers working with structurally vulnerable populations, and members of francophone, immigrant, and 2SLGBTQ+ communities. RESULTS: Analysis of stakeholders' insights and experiences led to the conceptualization of several structural barriers to dying well at home: inaccessible public and community infrastructure and services, a structural gap in death literacy, social stigma and discrimination, and limited access to relational social capital. SIGNIFICANCE OF RESULTS: Aging in Canada, as elsewhere across the globe, has increased demand for palliative care and support, especially in the home. Support for people wishing to die at home is a key public health issue. However, while Canadian policy documents normalize dying in place as ideal, it is uncertain whether these fit with the real possibilities for people nearing the end of life. Our analysis extends existing research on health equity in palliative and end-of-life care beyond a focus on service provision. Results of this analysis identify the need to expand policymakers' structural imaginations about what it means to die well at home in Canada.

Psychometric Properties of the Chinese Version of the Functional Assessment of Chronic Illness Therapy - Palliative Care (FACIT-Pal) in Patients With Advanced Cancer.

CONTEXT: The Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) has been widely used in assessing the quality of life (QOL) of patients with life-limiting illness. However, the Chinese version of the FACIT-Pal has not been psychometrically validated yet. OBJECTIVES: The purpose of this study was to psychometrically validate the FACIT-Pal in Chinese patients with advanced cancer. METHODS: 160 patients with advanced cancer in mainland China participated in this cross-sectional study. The scalability of the instrument was determined by the item-total correlations and the reliability was tested by examining the Cronbach's alpha coefficients. The construct and concurrent validity of the FACIT-Pal were also examined. RESULTS: The item-total correlation coefficients ranged from 0.25 to 0.72 (P < .01). Cronbach's alpha coefficient of the Chinese version of the FACIT-Pal was 0.94, ranging from 0.78 to 0.89 for subscales. Confirmatory factor analysis (CFA) results provided support for the measurement structure of the 26-item Functional Assessment of Cancer Therapy-General (FACT-G). Exploratory factor analysis (EFA) of the 19-item palliative care subscale identified five factors accounting for 62.21% of the total variance. Total/subscale scores of the FACIT-Pal were positively correlated with that of the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being 12 Item Scale (FACIT-Sp-12) (r = 0.338-0.811, P < .01), as well as with the Karnofsky Performance Scale (KPS) scores (r = 0.163-0.273, P < .05), except for the correlation between social/family well-being subscale score and KPS score. CONCLUSION: The Chinese version of the FACIT-Pal demonstrates desirable psychometric properties for evaluating QOL in Chinese patients with advanced cancer.

Assessing the suitability of the Carer Support Needs Assessment Tool (CSNAT-Paediatric) for use with parents of children with a life-limiting condition: A qualitative secondary analysis.

BACKGROUND: The demands of caring for a child with a life-limiting condition can have a profound impact on parents' health and wellbeing. Currently, there is no standard procedure for identifying and addressing the support needs of these parents. AIM: To assess the suitability of the Carer Support Needs Assessment Tool (CSNAT (Paediatric)) for use with parents of children with a life-limiting condition. DESIGN: Secondary qualitative content analysis of two qualitative datasets exploring the health, wellbeing and experiences of support of mothers and fathers of children with a life-limiting condition. SETTING: A total of 30 mothers and 12 fathers were recruited via four UK children's hospices and social media. RESULTS: Parental experiences of support mapped onto the existing domains of the CSNAT (Paediatric). One aspect of their experience, surrounding their child's educational needs, went beyond the existing domains of the CSNAT. An adapted version of the tool CSNAT (Paediatric) should include this domain. CONCLUSION: The CSNAT (Paediatric) is a relevant tool for the assessment of parental support needs. Further research should assess the acceptability and feasibility of implementation of the broader intervention: CSNAT-I (Paediatric).

How different are accuracies of clinicians' prediction of survival by assessment methods?

BACKGROUND: No standardized method has been established for evaluating the accuracy of a clinicians' prediction of survival (CPS). Till now, no study has compared the accuracy of CPS according to the evaluation methods using the same dataset. We aimed to examine the accuracy of CPS by different statistical approaches in patients with far-advanced cancer. METHODS: The current study was a secondary analysis of an international multicenter prospective cohort study. Newly admitted patients with advanced cancer were enrolled in palliative care units (PCUs) in Japan, Korea, and Taiwan. We obtained the temporal CPS at enrollment. The patients were classified into groups of days (≤7 days) and weeks (≤30 days) based on CPS and actual survival (AS). We evaluated the accuracy of CPS by the distribution, area under the receiver operating characteristics curve (AUROCs), and an estimate ±33% of AS. RESULTS: A total of 2,571 patients were assessed and admitted in 37 PCUs between January 2017 and September 2018. As for the "days" category, the distribution of AS is larger than that of CPS, however, the results are reversed in the "weeks" category. The AUROCs showed over 80% discrimination for both the "days" and "weeks" categories. Accurate CPS within ±33% of AS was approximately 30% in both "days" and "weeks" categories. CONCLUSIONS: We showed a discrepancy of approximately 30-80% in the accuracy of CPS among three different analysis methods: distribution, AUROC, and AS comparison. Considering the low accuracy of AS comparisons, clinicians should provide a wide range of survival time. CPS was able to effectively discriminate and may be useful for risk stratification.

Trends in Ductus Arteriosus Stent Versus Blalock-Taussig-Thomas Shunt Use and Comparison of Cost, Length of Stay, and Short-Term Outcomes in Neonates With Ductal-Dependent Pulmonary Blood Flow: An Observational Study Using the Pediatric Health Information Systems Database.

BACKGROUND: The modified Blalock-Taussig-Thomas shunt is the gold standard palliation for securing pulmonary blood flow in infants with ductal-dependent pulmonary blood flow. Recently, the ductus arteriosus stent (DAS) has become a viable alternative. METHODS AND RESULTS: This was a retrospective multicenter study of neonates ≤30 days undergoing DAS or Blalock-Taussig-Thomas shunt placement between January 1, 2017 and December 31, 2020 at hospitals reporting to the Pediatric Health Information Systems database. We performed generalized linear mixed-effects modeling to evaluate trends in intervention and intercenter variation, propensity score adjustment and inverse probability weighting with linear mixed-effects modeling to analyze length of stay and cost of hospitalization, and generalized linear mixed modeling to analyze differences in 30-day outcomes. There were 1874 subjects (58% male, 61% White) from 45 centers (29% DAS). Odds of DAS increased with time (odds ratio [OR] 1.23, annually, P<0.01 [95% CI, 1.10-1.38]) with significant intercenter variation (median OR, 3.81 [95% CI, 2.74-5.91]). DAS was associated with shorter hospital length of stay (ratio of geometric means, 0.76 [95% CI, 0.63-0.91]), shorter intensive care unit length of stay (ratio of geometric means, 0.77 [95% CI, 0.61-0.97]), and less expensive hospitalization (ratio of geometric means, 0.70 [95% CI, 0.56-0.87]). Intervention was not significantly associated with odds of 30-day transplant-free survival (OR,1.18 [95% CI, 0.70-1.99]) or freedom from catheter reintervention (OR, 1.02 [95% CI, 0.65-1.58]), but DAS was associated with 30-day freedom from composite adverse outcome (OR, 1.51 [95% CI, 1.11-2.05]). CONCLUSIONS: Use of DAS is increasing, but there is variability across centers. Though odds of transplant-free survival and reintervention were not significantly different after DAS, and DAS was associated with shorter length of stay and lower in-hospital costs.

Palliative care: economic challenges for researchers.

The economic challenges for researchers in palliative care is an emerging and challenging topic. Knowing where, how and how much is spent is fundamental for palliative care (PC) provision to be increasingly efficient and with lower costs. To accomplish this, there are three important factors to consider: early access to PC; specialised PC using standardised procedures and informal and home-based PC. Beyond costs, ethical aspects should always be present when this care is being provided in its different forms, locations and contexts. For those who want to study the economic challenges in PC, they need to comprehend the complexity of them, since they will always come from a careful articulation between ethics, the person´s needs, the cost of the care and who these costs are charged to.

A psychological experience assessment protocol of parent caregivers in paediatric palliative care.

Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence of an illness, and therefore several studies have tended to focus on the adaptation of parent caregivers. The aim of the present study is to present a psychological experience assessment protocol of parents in PPC. Methods: It consists of a socio-demographic and clinical questionnaire and a semi-structured interview based on an incomplete narrative deriving from the Unwanted Guest Metaphor. Results: On the basis of the latter, 10 dimensions of the experience in the parental subsystem were explored through parents' own perspective, namely: confrontation with the diagnosis; representation of the illness; emotional impact; day-to-day challenges; family impact; resources and social support; coping strategies; posttraumatic growth; representation of the sick child; and future perspectives. Discussion: The protocol can be used in person or remotely and its application enables the identification of specific needs and the establishment of psychotherapeutic goals and strategies for each family, thus enhancing their well-being and resilience, from an eco-systemic perspective. Conclusions: The protocol is presented in detail and its importance in the context of research and systemic intervention in PPC is discussed.

Improving Cancer Patient Outcomes and Cost-Effectiveness: A Markov Simulation of Improved Early Detection, Side Effect Management, and Palliative Care.

I employed a Markov model to simulate outcomes for a cohort of 1,000 hypothetical patients, comparing improvements in early detection, side effect management, and palliative care over a ten-year period. This model showed benefits in early detection and proactive health management, improving disease stability and reducing mortality rates. This protocol resulted in an 85.8% five-year survival rate, compared to 69.5% under standard protocol. Cost-effectiveness analysis showed significantly reduced costs and improved quality-adjusted life years. Our findings underscore the importance of comprehensive cancer care. These improvements not only reduce simulated healthcare costs but also significantly improve patient outcomes.