Characterising trends in the initiation, timing, and completion of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process: Retrospective analysis of routine data from a large UK hospital trust.

AIM: To assess patient socio-demographic and disease characteristics associated with the initiation, timing, and completion of emergency care and treatment planning in a large UK-based hospital trust. METHODS: Secondary retrospective analysis of data across 33 months extracted from digitally stored Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) plans within the electronic health record system of an acute hospital trust in England, UK. RESULTS: Data analysed from ReSPECT plans (n = 23,729), indicate an increase in the proportion of admissions having a plan created from 4.2% in January 2019 to 6.9% in September 2021 (mean = 8.1%). Forms were completed a median of 41 days before death (a median of 58 days for patients with capacity, and 21 days for patients without capacity). Do not attempt resuscitation was more likely to be recorded for patients lacking capacity, with increasing age (notably for patients aged over 74 years), being male, having ethnicity recorded as 'Asian or Asian British' or 'Black or Black British', and the absence of multiple disease groups. Having a preferred place of death recorded as 'hospital' led to a five-fold increase in the likelihood of dying in hospital. CONCLUSION: Variation in the initiation, timing, and completion of ReSPECT plans was identified by applying an evaluation framework. Digital storage of ReSPECT plan data presents opportunities for assessing trends and completion of the ReSPECT planning process and benchmarking across sites. Further research is required to monitor and understand any inequity in the implementation of the ReSPECT process in routine care.

In-hospital psychoeducation for family caregivers of Nigerian children with cancer (The RESCUE Study).

OBJECTIVES: High levels of caregiver burden (CB) are experienced by informal caregivers of pediatric patients with cancer. There is increasing evidence highlighting the extent of CB across sub-Saharan African countries, although there remains lack of interventions that target improvements in their experience. This study aimed to determine the impact of a structured psychoeducation program on caregivers' outcomes relating to preparedness to provide care, burden of caregiving, and quality of life (QoL). METHODS: This quasi-experimental (pre-and-posttest) design, involved family caregivers of children on admission for cancer treatment in 4 Nigerian tertiary hospitals. Eligible participants received 2 structured, psychoeducational training sessions delivered by a multidisciplinary oncology team, focusing on the management of patients' condition, spiritual care, self-care, and support. RESULTS: Subjects were mainly female (79.5%) and mostly mothers to children undergoing cancer treatment (74.7%). Commonest cancer type was acute lymphoblastic leukemia (23.9%) with evidence of metastatic disease found in 9.6% of children. Significant improvements were observed between pre- and posttest for unmet needs (z = -9.3; p < 0.001), preparedness for caregiving in palliative care (PCPC) (z = -7.0; p < 0.001), and overall QoL (z = -7.3; p < 0.001). A significant reduction in CB was also reported (z = -8.7; p < 0.001). SIGNIFICANCE OF RESULTS: This psychoeducational intervention (PEI) resulted in significant improvements in unmet needs, CB and significant improvements in PCPC. However, a reduction in QoL of the family caregivers was also observed. Findings from this study should encourage the use of well-crafted PEIs, delivered within hospital settings to promote improvements in outcomes for informal caregivers of hospitalized children suffering from cancer, in an African context. Further intervention development is required to better understand intervention components influencing changes in outcomes, while exploring feasibility testing and adaptation to similar settings in Nigeria and within Africa.

'So being here is. . . I feel like I'm being a social worker again, at the hospice': Using interpretative phenomenological analysis to explore social workers' experiences of hospice work.

BACKGROUND: Social workers have a significant role in hospices working with clients who are facing death but there is limited detailed understanding of the emotional impact of this work on social workers. Research has highlighted that those involved in hospice work find the work both a struggle (e.g. because of heightened emotions) and rewarding (noting that end-of-life care can feel like a privilege). AIM: To explore UK hospice social workers' emotional experiences of work and how this influences their practice. DESIGN: Semi-structured interviews were conducted with hospice social workers. Interviews were transcribed and transcripts were analysed using Interpretative Phenomenological Analysis. SETTING/PARTICIPANTS: Eight social workers from different hospices in the UK. RESULTS: Five overlapping superordinate themes emerged: making a difference to clients and families ('the difference made'), the emotional impact of working in hospices ('dealing with people's emotions, and death, and dying, it's serious stuff'), the relational context of this type of work ('awareness of affinity to connect'), the ways in which coping is facilitated in hospices ('seen it coming') and a foundation theme, connection and disconnection to values ('(dis)connection to values'). CONCLUSIONS: The results offer an exploration of social workers' experiences of their work in hospices; how adept they were at coping and how they prepared for and made sense of the often emotionally-laden experiences encountered. Their experience of the rewards and meaning derived from their work offers important findings for clinical practice. Further research is suggested to explore a multitude of healthcare professionals' perspectives across country settings using Interpretative Phenomenological Analysis.

Patient-reported symptom monitoring: using (big) data to improve supportive care at the macro-, meso-, and micro-levels.

PURPOSE: This paper aims to provide a comprehensive understanding of the need for continued development of symptom monitoring (SM) implementation, utilization, and data usage at the macro-, meso-, and micro-levels. METHODS: Discussions from a patient-reported SM workshop at the MASCC/ISSO 2022 annual meeting were analyzed using a macro-meso-micro analytical framework of cancer care delivery. The workshop categories "initiation and implementation, barriers to adoption and utilization, and data usage" were integrated for each level. RESULTS: At the macro-level, policy development could encourage data sharing and international collaboration, including the exchange of SM methods, supportive care models, and self-management modules. At the meso-level, institutions should adjust clinical workflow and service delivery and promote a thorough technical and clinical integration of SM. At the micro-level, SM should be individualized, with timely feedback for patients, and should foster trust and understanding of AI decision support tools amongst clinicians to improve supportive care. CONCLUSIONS: The workshop reached a consensus among international experts on providing guidance on SM implementation, utilization, and (big) data usage pathways in cancer survivors across the cancer continuum and on macro-meso-micro levels.

Pain coping, multidisciplinary care, and mHealth: Patients' views on managing advanced cancer pain.

OBJECTIVE: Pain is common among people with advanced cancer. While opioids provide significant relief, incorporating psycho-behavioral treatments may improve pain outcomes. We examined patients' experiences with pain self-management and how their self-management of chronic, cancer-related pain may be complemented by behavioral mobile health (mHealth) interventions. METHODS: We conducted semi-structured qualitative interviews with patients with advanced cancer and pain. Each participant reviewed content from our behavioral mHealth application for cancer pain management and early images of its interface. Participants reflected on their experiences self-managing cancer pain and on app content. Interviews were transcribed verbatim and analyzed using a combination of inductive and deductive thematic analysis. RESULTS: Patients (n = 28; 54% female; mean age = 53) across two geographic regions reported using psychological strategies (e.g., reframing negative thoughts, distraction, pain acceptance, social support) to manage chronic cancer-related pain. Patients shared their perspectives on the integration of psycho-behavioral pain treatments into their existing medical care and their experiences with opioid hesitancy. Patient recommendations for how mHealth interventions could best support them coalesced around two topics: 1.) convenience in accessing integrated pharmacological and psycho-behavioral pain education and communication tools and 2.) relevance of the specific content to their clinical situation. CONCLUSIONS: Integrated pharmacological and psycho-behavioral pain treatments were important to participants. This underscores a need to coordinate complimentary approaches when developing cancer pain management interventions. Participant feedback suggests that an mHealth intervention that integrates pain treatments may have the capacity to increase advanced cancer patients' access to destigmatizing, accessible care while improving pain self-management.

Development and pre-pilot testing of STAMP + CBT: an mHealth app combining pain cognitive behavioral therapy and opioid support for patients with advanced cancer and pain.

PURPOSE: We developed and piloted a mobile health app to deliver cognitive behavioral therapy for pain (pain-CBT), remote symptom monitoring, and pharmacologic support for patients with pain from advanced cancer. METHODS: Using an iterative process of patient review and feedback, we developed the STAMP + CBT app. The app delivers brief daily lessons from pain-CBT and pain psychoeducation, adapted for advanced cancer. Daily surveys assess physical symptoms, psychological symptoms, opioid utilization and relief. Just-in-time adaptive interventions generate tailored psychoeducation in response. We then conducted a single-arm pilot feasibility study at two cancer centers. Patients with advanced cancer and chronic pain used the app for 2 or 4 weeks, rated its acceptability and provided feedback in semi-structured interviews. Feasibility and acceptability were defined as ≥ 70% of participants completing ≥ 50% of daily surveys, and ≥ 80% of acceptability items rated ≥ 4/5. RESULTS: Fifteen participants (female = 9; mean age = 50.3) tested the app. We exceeded our feasibility and accessibility benchmarks: 73% of patients completed ≥ 50% of daily surveys; 87% of acceptability items were rated ≥ 4/5. Participants valued the app's brevity, clarity, and salience, and found education on stress and pain to be most helpful. The app helped participants learn pain management strategies and decrease maladaptive thoughts. However, participants disliked the notification structure (single prompt with one snooze), which led to missed content. CONCLUSION: The STAMP + CBT app was an acceptable and feasible method to deliver psychological/behavioral treatment with pharmacologic support for cancer pain. The app is being refined and will be tested in a larger randomized pilot study. TRN: NCT05403801 (05/06/2022).

Risk of COVID-19 death for people with a pre-existing cancer diagnosis prior to COVID-19-vaccination: A systematic review and meta-analysis.

While previous reviews found a positive association between pre-existing cancer diagnosis and COVID-19-related death, most early studies did not distinguish long-term cancer survivors from those recently diagnosed/treated, nor adjust for important confounders including age. We aimed to consolidate higher-quality evidence on risk of COVID-19-related death for people with recent/active cancer (compared to people without) in the pre-COVID-19-vaccination period. We searched the WHO COVID-19 Global Research Database (20 December 2021), and Medline and Embase (10 May 2023). We included studies adjusting for age and sex, and providing details of cancer status. Risk-of-bias assessment was based on the Newcastle-Ottawa Scale. Pooled adjusted odds or risk ratios (aORs, aRRs) or hazard ratios (aHRs) and 95% confidence intervals (95% CIs) were calculated using generic inverse-variance random-effects models. Random-effects meta-regressions were used to assess associations between effect estimates and time since cancer diagnosis/treatment. Of 23 773 unique title/abstract records, 39 studies were eligible for inclusion (2 low, 17 moderate, 20 high risk of bias). Risk of COVID-19-related death was higher for people with active or recently diagnosed/treated cancer (general population: aOR = 1.48, 95% CI: 1.36-1.61, I2 = 0; people with COVID-19: aOR = 1.58, 95% CI: 1.41-1.77, I2 = 0.58; inpatients with COVID-19: aOR = 1.66, 95% CI: 1.34-2.06, I2 = 0.98). Risks were more elevated for lung (general population: aOR = 3.4, 95% CI: 2.4-4.7) and hematological cancers (general population: aOR = 2.13, 95% CI: 1.68-2.68, I2 = 0.43), and for metastatic cancers. Meta-regression suggested risk of COVID-19-related death decreased with time since diagnosis/treatment, for example, for any/solid cancers, fitted aOR = 1.55 (95% CI: 1.37-1.75) at 1 year and aOR = 0.98 (95% CI: 0.80-1.20) at 5 years post-cancer diagnosis/treatment. In conclusion, before COVID-19-vaccination, risk of COVID-19-related death was higher for people with recent cancer, with risk depending on cancer type and time since diagnosis/treatment.

Remote Symptom Monitoring to Enhance the Delivery of Palliative Cancer Care in Low-Resource Settings: Emerging Approaches from Africa.

This paper brings together researchers, clinicians, technology developers and digital innovators to outline current applications of remote symptom monitoring being developed for palliative cancer care delivery in Africa. We outline three remote symptom monitoring approaches from three countries, highlighting their models of delivery and intended outcomes, and draw on their experiences of implementation to guide further developments and evaluations of this approach for palliative cancer care in the region. Through highlighting these experiences and priority areas for future research, we hope to steer efforts to develop and optimise remote symptom monitoring for palliative cancer care in Africa.

Fixing the Leaky Pipe: How to Improve the Uptake of Patient-Reported Outcomes-Based Prognostic and Predictive Models in Cancer Clinical Practice.

PURPOSE: This discussion paper outlines challenges and proposes solutions for successfully implementing prediction models that incorporate patient-reported outcomes (PROs) in cancer practice. METHODS: We organized a full-day multidisciplinary meeting of people with expertise in cancer care delivery, PRO collection, PRO use in prediction modeling, computing, implementation, and decision science. The discussions presented here focused on identifying challenges to the development, implementation and use of prediction models incorporating PROs, and suggesting possible solutions. RESULTS: Specific challenges and solutions were identified across three broad areas. (1) Understanding decision making and implementation: necessitating multidisciplinary collaboration in the early stages and throughout; early stakeholder engagement to define the decision problem and ensure acceptability of PROs in prediction; understanding patient/clinician interpretation of PRO predictions and uncertainty to optimize prediction impact; striving for model integration into existing electronic health records; and early regulatory alignment. (2) Recognizing the limitations to PRO collection and their impact on prediction: incorporating validated, clinically important PROs to maximize model generalizability and clinical engagement; and minimizing missing PRO data (resulting from both structural digital exclusion and time-varying factors) to avoid exacerbating existing inequalities. (3) Statistical and modeling challenges: incorporating statistical methods to address missing data; ensuring predictive modeling recognizes complex causal relationships; and considering temporal and geographic recalibration so that model predictions reflect the relevant population. CONCLUSION: Developing and implementing PRO-based prediction models in cancer care requires extensive multidisciplinary working from the earliest stages, recognition of implementation challenges because of PRO collection and model presentation, and robust statistical methods to manage missing data, causality, and calibration. Prediction models incorporating PROs should be viewed as complex interventions, with their development and impact assessment carried out to reflect this.

Supporting Pain Self-Management in Patients With Cancer: App Development Based on a Theoretical and Evidence-Driven Approach.

BACKGROUND: To inform the development of an intervention, it is essential to have a well-developed theoretical understanding of how an intervention causes change, as stated in the UK Medical Research Council guidelines for developing complex interventions. Theoretical foundations are often ignored in the development of mobile health apps intended to support pain self-management for patients with cancer. OBJECTIVE: This study aims to systematically set a theory- and evidence-driven design for a pain self-management app and specify the app's active features. METHODS: The Behavior Change Wheel (BCW) framework, a step-by-step theoretical approach to the development of interventions, was adopted to achieve the aim of this study. This started by understanding and identifying sources of behavior that could be targeted to support better pain management. Ultimately, the application of the BCW framework guided the identification of the active contents of the app, which were characterized using the Behavior Change Technique Taxonomy version 1. RESULTS: The theoretical analysis revealed that patients may have deficits in their capability, opportunity, and motivation that prevent them from performing pain self-management. The app needs to use education, persuasion, training, and enablement intervention functions because, based on the analysis, they were found the most likely to address the specified factors. Eighteen behavior change techniques were selected to describe precisely how the intervention functions can be presented to induce the desired change regarding the intervention context. In other words, they were selected to form the active contents of the app, potentially reducing barriers and serving to support patients in the self-management of pain while using the app. CONCLUSIONS: This study fully reports the design and development of a pain self-management app underpinned by theory and evidence and intended for patients with cancer. It provides a model example of the BCW framework application for health app development. The work presented in this study is the first systematic theory- and evidence-driven design for a pain app for patients with cancer. This systematic approach can support clarity in evaluating the intervention's underlying mechanisms and support future replication.

Physical activity service provision in hospice care: A national mixed-methods study.

BACKGROUND: Physical activity (PA) interventions help people with advanced incurable diseases to manage symptoms and improve their quality of life. However, little is known about the extent to which PA is currently delivered in hospice care in England. OBJECTIVES: To determine the extent of and intervention features of PA service provision in hospice care in England alongside barriers and facilitators to their delivery. METHODS: An embedded mixed-methods design using (1) a nationwide online survey of 70 adult hospices in England and (2) focus groups and individual interviews with health professionals from 18 hospices. Analysis of the data involved applying descriptive statistics to the numeric items and thematic analysis to the open-ended questions. Quantitative and qualitative data were collected and analyzed separately. RESULTS: The majority of responding hospices (n = 47/70, 67%) promoted PA in routine care. Sessions were most often delivered by a physiotherapist (n = 40/47, 85%) using a personalized approach (n = 41/47, 87%) and included resistance/thera bands, Tai Chi/Chi Qong, circuit exercises, and yoga. The following qualitative findings were revealed: (1) variation among hospices in their capacity to deliver PA, (2) a desire to embed a hospice culture of PA, and (3) a need for an organizational commitment to PA service provision. SIGNIFICANCE OF RESULTS: While many hospices in England deliver PA, there is considerable variation in its delivery across sites. Funding and policy action may be needed to support hospices to initiate or scale up services and address inequity in access to high-quality interventions.

Factors Influencing the Experience of Breast and Cervical Cancer Screening Among Women in Low- and Middle-Income Countries: A Systematic Review.

PURPOSE: The persistent high morbidity and mortality from breast and cervical cancer in low- and middle-income countries (LMICs) may be influenced by global disparities in the uptake of screening services. This review sought to synthesize existing evidence to determine factors that influence the experience of women relating to breast and cervical screening in LMICs. METHODS: A qualitative systematic review of the literature identified through Global Health, Embase, PsycInfo, and MEDLINE. Eligible studies included those outlining primary qualitative research or mixed-method studies with reporting of qualitative findings, detailing women's experiences of involvement with programs for breast or cervical cancer screening. Framework synthesis was used to explore and organize findings from primary qualitative studies and the Critical Appraisal Skills Programme checklist used for quality assessment. RESULTS: Database searches yielded 7,264 studies for title and abstract screening and 90 full-text articles for screening, with qualitative data from 17 studies and a total of 722 participants included in this review. Four stages influencing experiences of women were generated across both breast and cervical cancer screening approaches, with individual (eg, knowledge of cancer), social (eg, religion, cultural beliefs), and health system (eg, accessibility) factors identified that influence women's initial and subsequent engagement. CONCLUSION: This study synthesizes existing evidence of factors that influence engagement with breast and cervical cancer screening in LMICs. Evidence-informed recommendations are proposed that may improve the experience of cancer screening in LMICs, with further research necessary to explore their operationalization and impact on cancer care delivery.

The Experience of Limited Access to Care for Community-Based Patients With Spinal Cord Injury and Stroke in Nepal and the Potential of Telerehabilitation: A Qualitative Study.

This study explores the experiences of care received and management of disability for individuals with spinal cord injury and stroke following discharge from a specialty rehabilitation center, alongside perspectives on the potential role of telerehabilitation. We employed qualitative in-depth face-to-face interviews with patients who had accessed and been discharged from a specialist rehabilitation center in Nepal were used. Interviews sought perspectives of adjusting to, living with, and managing disability alongside the potential role of telerehabilitation in the community setting. Inductive thematic analysis was used to derive themes. A total of 17 participants with spinal cord injuries or stroke were interviewed. Four generated themes included: (i) Difficulties accessing support and perceived mismanagement following initial neurological injury; (ii) Realizing the magnitude and impact of an injury in the absence of clear routes to support; (iii) A multi-faceted symptom burden and its impact; and (iv) The nature and types of interaction with health professionals post-discharge and the potential role of telerehabilitation. We detail accounts of suspended periods with minimal or no support provided from healthcare providers for people with spinal cord injury and stroke following initial acute management. Telerehabilitation could be a worthwhile approach to enhance access to rehabilitation in the community setting but must accompany national efforts to enhance the provision of specialist rehabilitation.

Oncology distress screening within predominately Black Veterans: Outcomes on supportive care utilization, hospitalizations, and mortality.

BACKGROUND: We evaluated whether patients' initial screening symptoms were related to subsequent utilization of supportive care services and hospitalizations, and whether patient-level demographics, symptoms, hospitalizations, and supportive care service utilization were associated with mortality in primarily low-income, older, Black Veterans with cancer. METHODS: This quality improvement project created collaborative clinics to conduct cancer distress screenings and refer to supportive care services at an urban, VA medical center. All patients completed a distress screen with follow-up screening every 3 months. Supportive care utilization, hospitalization rates, and mortality were abstracted through medical records. Poisson regression models and cox proportional hazard models were utilized. RESULTS: Five hundred and eighty five screened patients were older (m = 72), mostly Black 70% (n = 412), and had advanced cancer 54%. Fifty-eight percent (n = 340) were screened only once with 81% (n = 470) receiving ≥1 supportive care service and 51.5% (n = 297) being hospitalized ≥1 time 18 months following initial screen. Symptom severity was significantly related to number of hospitalizations. Low mood was significantly related to higher supportive services (p < 0.001), but not hospitalizations (p ≥ 0.52). Pain, fatigue, physical function, nutrition, and physical symptoms were significantly associated with more supportive services and hospitalizations (p < 0.01). Twenty percent (n = 168) died; Veterans who were Black, had lower stage cancers, better physical health, and utilized less supportive care services had lower odds of mortality (p ≤ 0.01). CONCLUSION: Individuals with elevated distress needs and those reporting lower physical function utilized more supportive care services and had higher hospitalization rates. Lower physical function, greater supportive care use, higher stage cancer, and being non-Black were associated with higher odds of death.

Psychological distress and associated factors among Palestinian advanced cancer patients: A cross-sectional study.

Objective: There is limited research exploring the experiences of people living with advanced cancer in the Gaza Strip (GS), Palestine. Thus, this study aimed to determine the level of psychological distress, anxiety, and depression among advanced cancer patients in the GS and identify factors associated with a high level of distress. Materials and methods: A secondary analysis was performed using primary data from a larger study focusing on supportive care needs in advanced cancer patients in GS. Three hundred sixty-one patients agreed to participate and filled out the Distress Thermometer (DT) and the Hospital Anxiety and Depression Scale (HADS). Multivariate logistic regression was conducted to identify factors associated with high distress levels. Results: Over two-thirds of advanced cancer patients (70.6%) reported a high level of distress. They also reported a significantly higher distress level than patients with early cancer (96.5 vs. 3.5%; p = 0.001). About 92.8% of participants reported depression and anxiety symptoms. Physical, emotional, and practical problems were the primary sources of distress. Breast cancer patients were more likely to have psychological distress than colon and stomach cancer patients. Newly diagnosed patients had a higher level of anxiety, depression, and distress than those who had a cancer diagnosis for an extended period. Conclusion: Patients with advanced cancer in the GS exhibited a significantly higher level of psychological distress, depression and anxiety than patients with advanced cancer elsewhere. Efforts should be made to identify psychological distress as a routine part of oncology practice. Future research should further explore the causes of psychological distress in cancer patients in conflict zones and feasible mitigation strategies.

The use of and need for data and information by health professionals supporting the delivery of palliative cancer care services in sub-Saharan Africa: A qualitative study.

PURPOSE: The ability to develop and evaluate approaches to the management of advanced cancer in sub-Saharan Africa is limited by the lack of local, reliable and valid data to ensure that practice is evidence-based, replicable and reflects the needs of the population served. METHODS: A secondary qualitative analysis of in-depth interviews with 59 health professionals delivering palliative cancer care in Nigeria, Uganda and Zimbabwe were conducted to determine the use and needs for data and information for patient care and service delivery. Framework analysis was used, informed by a conceptual model for data use in low and middle-income countries. RESULTS: Three meta-themes include: (1) Current practice in data gathering and use; (2) Gaps for capturing, storing information and supporting communication, and; (3) Needs and opportunities for data use. Deficits in current data access and use were identified, alongside targets for improving the quality, accessibility and utility of data to inform the development of palliative cancer care. CONCLUSIONS: The availability and use of relevant and reliable data relating to the current provision of palliative cancer care are requisite for the contextually appropriate and effective development of health services. The requirements and constraints articulated by participants can guide future development and optimisation of digital health approaches for palliative cancer care in the participating countries, with relevance to the wider sub-Saharan Africa region.

Digital technologies in routine palliative care delivery: an exploratory qualitative study with health care professionals in Germany.

OBJECTIVE: To explore health care professionals' (HCPs) perspectives, experiences and preferences towards digital technology use in routine palliative care delivery. METHODS: HCPs (n = 19) purposively selected from a sample of settings that reflect routine palliative care delivery (i.e. specialized outpatient palliative care, inpatient palliative care, inpatient hospice care in both rural and urban areas of the German states of Brandenburg and Berlin) participated in an explorative, qualitative study using semi-structured interviews. Interview data were analyzed using structured qualitative content analysis. RESULTS: Digital technologies are widely used in routine palliative care and are well accepted by HCPs. Central functions of digital technologies as experienced in palliative care are coordination of work processes, patient-centered care, and communication. Especially in outpatient care, they facilitate overcoming spatial and temporal distances. HCPs attribute various benefits to digital technologies that contribute to better coordinated, faster, more responsive, and overall more effective palliative care. Simultaneously, participants preferred technology as an enhancement not replacement of care delivery. HCPs fear that digital technologies, if overused, will contribute to dehumanization and thus significantly reduce the quality of palliative care. CONCLUSION: Digital technology is already an essential part of routine palliative care delivery. While generally perceived as useful by HCPs, digital technologies are considered as having limitations and carrying risks. Hence, their use and consequences must be carefully considered, as they should discreetly complement but not replace human interaction in palliative care delivery.

Mapping and characterising electronic palliative care coordination systems and their intended impact: A national survey of end-of-life care commissioners.

OBJECTIVES: In England, Electronic Palliative Care Coordination Systems (EPaCCS) were introduced in 2008 to support care coordination and delivery in accordance with patient preferences. Despite policy supporting their implementation, there has been a lack of rigorous evaluation of EPaCCS and it is not clear how they have been translated into practice. This study sought to examine the current national implementation of EPaCCS, including their intended impact on patient and service outcomes, and barriers and facilitators for implementation. METHODS: We conducted a national cross-sectional online survey of end-of-life care commissioning leads for Clinical Commissioning Groups (CCGs) in England. We enquired about the current implementation status of EPaCCS, their role in information sharing and intended impact, and requested routine patient-level data relating to EPaCCS. RESULTS: Out of 135 CCGs, 85 (63.0%) responded, with 57 (67.1%) having operational EPaCCS. Use of EPaCCS were confined to healthcare providers with most systems (67%) not supporting information sharing with care homes and social care providers. Most systems (68%) sought to facilitate goal concordant care, although there was inconsonance between intended impacts and monitoring measures used. Common challenges to implementation included healthcare professionals' limited engagement. Only one-third of patients had an EPaCCS record at death with limited recording of patient preferences. CONCLUSIONS: Critical gaps exist in engagement with EPaCCS and their ability to facilitate information sharing across care providers. The limited alignment between stated goals of EPaCCS and their monitoring impedes efforts to understand which characteristics of systems can best support care delivery.

TEleRehabilitation Nepal (TERN) for People With Spinal Cord Injury and Acquired Brain Injury: A Feasibility Study.

BACKGROUND: Spinal Cord Injury (SCI) or Acquired Brain Injury (ABI) leads to disability, unemployment, loss of income, decreased quality of life and increased mortality. The impact is worse in Low-and Middle-Income Countries (LMICs) due to a lack of efficient long-term rehabilitative care. This study aims to explore the feasibility and acceptability of a telerehabilitation programme in Nepal. METHODS: Prospective cohort feasibility study in a community setting following discharge from a specialist rehabilitation centre in Nepal. Patients with SCI or ABI who had previously accessed specialist rehabilitation were connected to a specialist Multidisciplinary Team (MDT) in the centre through a video conference system for comprehensive remote assessments and virtual individualised interventions. Data were captured on recruitment, non-participation rates, retention, acceptability (via end-of-study in-depth interviews with a subset of participants) and outcome measures including the Modified Barthel Index (MBI), Depression Anxiety Stress Scale (DASS) and EuroQol-5D (EQ-5D), completed pre- and post-programme. RESULTS: 97 participants with SCI (n = 82) or ABI (n = 15) discharged from the centre during an 18-month period were approached and enrolled on the study. The telerehabilitation programme facilitated the delivery of support around multiple aspects of rehabilitation care, such as spasticity treatments and pain management. Outcome measures indicated a significant improvement in functional independence (P < .001), depression, anxiety and stress (P < .001) and quality of life (P < .001). Qualitative interviews (n = 18) revealed participants found the programme acceptable, valuing regular contact and input from MDT professionals and avoiding expensive and lengthy travel. CONCLUSION: This is the first study in Nepal to identify telerehabilitation as a feasible and acceptable approach to augment the provision of specialist rehabilitation. Future research is needed to assess the suitability of the programme for other conditions requiring specialist rehabilitation and determine the mechanisms underpinning improved outcomes for people with SCI or ABI. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04914650.