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ObjectiveCancer patients in Zimbabwe typically access health services with advanced disease, limiting treatment choices and lessening the likelihood of positive treatment outcomes. We outline experiences of patients with advanced cancer prior to interaction with palliative care services to identify targets for future intervention development to enhance care delivery in Zimbabwe.MethodsParticipants were purposively sampled adult patients with advanced cancer. We adopted a thematic approach to guide a qualitative secondary data analysis exploring factors influencing support sought by participants, external factors influencing decision making across the disease trajectory and the process for seeking and accessing palliative care.ResultsParticipants reported fragmented and uncoordinated care, from initial symptom experience and throughout disease progression. A recurring notion of disjuncture was present through participants' experiences of gaps, breaks and discontinuity across the disease trajectory. Each step had a beginning and end without clear routes for transition with movement between steps as a result of happenstance or informal encounters.ConclusionTargets for intervention development at the patient and family level exist that may reduce the disjuncture currently experienced between need and care provision. A holistic response that incorporates engagement with policy actors is critical to addressing prominent financial constraints for patients.

IntroductionPalliative care is a clinically and cost-effective component of cancer services in sub-Saharan Africa (SSA). Despite the significant need for palliative cancer care in SSA, coverage remains inadequate. The exploration of digital health approaches could support increases in the quality and reach of palliative cancer care services in SSA. However, there is currently a lack of any theoretical underpinning or data to understand stakeholder drivers for digital health components in this context. This project addresses this gap through engaging with key stakeholders to determine data and information needs that could be supported through digital health interventions.Methods and analysisThis is a multicountry, cross-sectional, qualitative study conducted in Nigeria, Uganda and Zimbabwe. In-depth interviews will be conducted in patients with advanced cancer (n=20), caregivers (n=15), health professionals (n=20) and policy-makers (n=10) in each of the three participating countries. Data from a total of 195 interviews will transcribed verbatim and translated into English before being imported into NVivo software for deductive framework analysis. The analysis will seek to understand the acceptability and define mechanisms of patient-level data capture and usage via digital technologies.Ethics and disseminationEthics approvals have been obtained from the Institutional Review Boards of University of Leeds (Ref: MREC 18-032), Research Council of Zimbabwe (Ref: 03507), Medical Research Council of Zimbabwe (Ref: MRCZ/A/2421), Uganda Cancer Institute (Ref: 19-2018), Uganda National Council of Science and Technology (Ref: HS325ES) and College of Medicine University of Lagos (Ref: HREC/15/04/2015). The project seeks to determine optimal mechanisms for the design and development of subsequent digital health interventions to support development, access to, and delivery of palliative cancer care in SSA. Dissemination of these findings will occur through newsletters and press releases, conference presentations, peer-reviewed journals and social media.Trial registration numberISRCTN15727711.

Background: Digital advance care planning systems are used internationally to document and share patients' wishes and preferences to inform care delivery. However, their use is impeded by a limited understanding of factors influencing implementation and evaluation. Aim: To develop mid-range programme theory to account for technological, infrastructure and human factor influences on digital advance care planning systems. Design: Exploratory qualitative research design incorporating Theory of Change workshops that explored contextual assumptions affecting digital advance care planning in practice. A mid-range programme theory was developed through thematic framework analysis using the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework, generating a conceptual model depicting contextual assumptions, interventions and outcomes influencing implementation. Participants: A total of 38 participants (16 from London, 14 from West Yorkshire and 8 online) including patients, carers and health and care professionals (including those with commissioning responsibilities). Results: A conceptual model was generated depicting five distinct components relating to digital advance care planning system use: (sociocultural, technical and structural prerequisites; recognition of the clinical need for conversation; having conversations and documenting decisions; accessing, actioning and amending; and using data to support evaluation, use and implementation). There were differences and uncertainty relating to what digital advance care planning systems are, who they are for and how they should be evaluated. Conclusions: Digital advance care planning lacks shared beliefs and practices, despite these being essential for complex technology implementation. Our mid-range programme theory can guide their further development and application by considering technological, infrastructure and human factor influences to optimise their implementation. [ABSTRACT FROM AUTHOR]

Background: Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care. Aim: To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development. Design: A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews. Setting/participants: Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents. Results: Four generated themes included: 1. ' Why haven't you read what's wrong with me? '; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having ' a say in matters ': control and responsibility; 4. Enabling patient and carer control of their records: ' custodianship is key '. Conclusions: Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems. [ABSTRACT FROM AUTHOR]

Background: Caring for patients with advanced cancer is complex and challenging, requiring varied expertise, including symptom management, communication skills, care coordination and emotional resilience. Within existing literature, the lived experiences of oncology nurses are poorly articulated in countries with a lower income where formal palliative care (PC) is absent. Aim: To explore the lived experiences of Gazan oncology nurses who provide care to patients with advanced cancer in healthcare systems, without formal palliative care infrastructure. Methods: A phenomenological approach was adopted. Semi-structured interviews were conducted between January and April 2022, in the Turkish Palestinian Friendship Hospital. Thematic analysis used the themes (corporeality, relationality, spatiality and temporality) to facilitate reflection on the meaning of participants' lived experiences. Results: Interviews were undertaken with 16 oncology nurses. The experience of the 'erosion of nurses' work when coping with anxious attachments to patients and families' was the overarching theme in nurses' views, characterised by five sub-themes: (1) inadequacy of PC training and resources, (2) serving humanity, (3) pride in their profession, (4) existential distress and the coping strategies used by nurses, and (5) reported stress and anxiety when caring for seriously ill patients and their families. Conclusions: The study sheds light on the challenges and powerful emotions experienced by oncology nurses who care for patients with advanced cancer, yet lack the necessary PC training and institutional resources. The findings indicate an urgent need for PC training for nurses within the Gazan healthcare system and other lower-income settings. Assessing nurses' emotions and relationships with patients and family caregivers is imperative to enable optimum care for patients with cancer and to foster resilience among their nurses. [ABSTRACT FROM AUTHOR]

Digital approaches to support advance care planning (ACP) documentation and sharing are increasingly being used, with a lack of research to characterise their design, content, and use. This study aimed to characterise how digital approaches are being used to support ACP documentation and sharing internationally. A scoping review was performed in accordance with the JBI (formerly Joanna Briggs Institute) guidelines and the PRISMA 2020 checklist, prospectively registered on Open Science Framework (). MEDLINE, EMBASE, PsycINFO, ACM Digital, IEEE Xplore and CINAHL were searched in February 2023. Only publications in English, published from 2008 onwards were considered. Eligibility criteria included a focus on ACP and electronic systems. Out of 2,393 records, 34 reports were included, predominantly from the USA (76.5%). ACP documentation is typically stored in electronic health records (EHRs) (67.6%), with a third (32.4%) enabling limited patient access. Non-standard approaches (n = 15;44.1%) were the commonest study design of included reports, with outcome measures focusing on the influence of systems on the documentation (i.e. creation, quantity, quality, frequency or timing) of ACP information (n = 23;67.6%). Digital approaches to support ACP are being implemented and researched internationally with an evidence base dominated by non-standard study designs. Future research is needed to extend outcome measurement to consider aspects of care quality and explore whether the content of existing systems aligns with aspects of care that are valued by patients. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Palliative care aims to improve the quality of life for people with life-limiting illnesses. Advance care planning conversations that establish a patient's wishes and preferences for care are part of a person-centered approach. Internationally, electronic health record systems are digital interventions used to record and share patients' advance care plans across health care services and settings. They aim to provide tools that support electronic information sharing and care coordination. Within the United Kingdom, Electronic Palliative Care Coordination Systems (EPaCCS) are an example of this. Despite over a decade of policy promoting EPaCCS nationally, there has been limited implementation and consistently low levels of use by health professionals. Objective: The aim of this study is to explore the factors that influence the implementation of EPaCCS into routine clinical practice across different care services and settings in 2 major regions of England. Methods: A qualitative interview study design was used, guided by Normalization Process Theory (NPT). NPT explores factors affecting the implementation of complex interventions and consists of 4 primary components (coherence, cognitive participation, collective action, and reflexive monitoring). Health care and social care practitioners were purposively sampled based on their professional role and work setting. Individual web-based semistructured interviews were conducted. Data were analyzed using thematic framework analysis to explore issues which affected the implementation of EPaCCS across different settings at individual, team, organizational, and technical levels. Results: Participants (N=52) representing a range of professional roles were recruited across 6 care settings (hospice, primary care, care home, hospital, ambulatory, and community). In total, 6 themes were developed which mapped onto the 4 primary components of NPT and represented the multilevel influences affecting implementation. At an individual level, these included (1) EPaCCS providing a clear and distinct way of working and (2) collective contributions and buy-in. At a team and organizational level, these included (3) embedding EPaCCS into everyday practice and (4) championing driving implementation. At a technical level, these included (5) electronic functionality, interoperability, and access. Breakdowns in implementation at different levels led to variations in (6) confidence and trust in EPaCCS in terms of record accuracy and availability of access. Conclusions: EPaCCS implementation is influenced by individual, organizational, and technical factors. Key challenges include problems with access alongside inconsistent use and engagement across care settings. EPaCCS, in their current format as digital advance care planning systems are not consistently facilitating electronic information sharing and care coordination. A redesign of EPaCCS is likely to be necessary to determine configurations for their optimal implementation across different settings and locations. This includes supporting health care practitioners to document, access, use, and share information across multiple care settings. Lessons learned are relevant to other forms of digital advance care planning approaches being developed internationally. [ABSTRACT FROM AUTHOR]

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. Challenges and solutions to implementing patient-reported outcome–based predictive models in cancer. [ABSTRACT FROM AUTHOR]

The global threat which continues to accompany SARS‐CoV‐2 has led to a global response which adopts lockdown and stays home policy as means of curtailing its spread. This study investigates compliance with the Stay Home policy and exposure to COVID‐19 in Nigeria. A survey was conducted from April 4 to May 8, 2020 using a cross‐sectional mixed‐methods approach to elicit responses from 879 participants across six geopolitical zones of Nigeria. Descriptive, χ2, and multiple regression tests were used to analyze survey data using SPSS, whereas NVivo v12 was used for thematic analysis of qualitative data. States with complete lockdown had 72.4% of respondents complying fully with the policy compared with 44.2% of respondents in zones with the partial lockdown. Market places, classified as high‐risk zones, were the most visited (n = 505; 71.0%). Though compliance was influenced by the nature of lockdown enforced (χ2 = 70.385, df = 2; p < 0.05), being a female, a widow, and unemployed were associated with increased compliance. Exposure to COVID‐19 was associated with being married, unemployed, and having no income. Fear, anxiety, and misperception play major roles in compliance. The authors conclude that compliance is not uniform and a more nuanced and targeted approach is required as the government continues to respond to the COVID‐19 global pandemic. Key Points: Exposure to risk of COVID‐19 infection was conditioned by social and economic realities.The nature of lockdown (partial or complete) influenced compliance with stay Home Policy.Visits among family members was higher in areas with complete lockdown compared to area with partial lockdown.Places classified as high‐risk zones (market and religious centres) were the most patronised.Fear, anxiety and misperception play significant roles in compliance with Stay Home Policy. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Translating research into clinical practice is a global priority because of its potential impact on health services delivery and outcomes. Despite the ever‐increasing depth and breadth of health research, most areas across the globe seem to be slow to translate relevant research evidence into clinical practice. Thus, this review sought to synthesise existing literature to elucidate the barriers and facilitators to the translation of health research into clinical practice. A systematic review of reviews approach was utilised. Review studies were identified across PubMed, Scopus, Embase, CINAHL and Web of Science databases, from their inception to 15 March 2021. Searching was updated on 30 March 2022. All retrieved articles were screened by two authors; reviews meeting the inclusion criteria were retained. Based on the review type, two validated tools were employed to ascertain their quality: A Measurement Tool to Assess Systematic Reviews‐2 and International Narrative Systematic assessment. The framework synthesis method was adopted to guide the analysis and narrative synthesis of data from selected articles. Ten reviews met the inclusion criteria. The study revealed that the translation of new evidence was limited predominantly by individual‐level issues and less frequently by organisational factors. Inadequate knowledge and skills of individuals to conduct, organise, utilise and appraise research literature were the primary individual‐level barriers. Limited access to research evidence and lack of equipment were the key organisational challenges. To circumvent these barriers, it is critical to establish collaborations and partnerships between policy makers and health professionals at all levels and stages of the research process. The study concluded that recognising barriers and facilitators could help set key priorities that aid in translating and integrating research evidence into practice. Effective stakeholder collaboration and co‐operation should improve the translation of research findings into clinical practice. [ABSTRACT FROM AUTHOR]

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 [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives: Cancer is the second leading cause of death in the Gaza Strip, Palestine, but there is an absence of evidence systematically assessing symptom burden and quality of life (QoL) using validated tools. Our objective was to assess associations between socio-demographic and disease-related characteristics, symptom burden and QoL in a sample of cancer patients accessing outpatient services in the Gaza Strip. Design: A cross-sectional, descriptive survey using interviews and medical record review involving patients with cancer accessing oncology outpatient services at Al Rantisi Hospital and European Gaza Hospital (EGH) in the Gaza Strip was employed. Socio-demographic and disease-related data, the Lebanese version of the Memorial Symptom Assessment Scale (MSAS-Leb), and the Arabic version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30 (EORTC QLQ-C30) were collected. Multiple linear regression was used to judge the relative influence of determinants of QoL. Results: Of 414 cancer patients approached, 385 patients consented to participation. The majority were women (64.7%) with a mean age of 52 years (SD = 16.7). Common cancer diagnoses were breast (32.2%), haematological (17.9%) and colorectal (9.1%). The median number of symptoms was 10 (IQR 1.5–18.5). Mean overall QoL was 70.5 (SD 19.9) with common physical and psychological symptoms identified. A higher burden of symptoms was associated with marital status, education and income. Limited access to both opioids and psychological support were reported. Conclusions: A high symptom burden was identified in outpatients with cancer. Increasing provision and access to supportive care for physical and psychological symptoms should be prioritised alongside exploring routine assessment of symptom burden and QoL. [ABSTRACT FROM AUTHOR]

Background: Despite the biopsychosocial underpinnings of chronic noncancer pain, relatively little is known about the contribution of psychosocial factors to chronic cancer pain. The authors aimed to characterize associations between biopsychosocial factors and pain and opioid use among individuals with chronic pain and cancer. Methods: The authors conducted a retrospective, cross‐sectional study of 700 patients with chronic pain and cancer seeking treatment at an academic tertiary pain clinic. Patients completed demographic questionnaires and validated psychosocial and pain measures. Multivariable, hierarchical linear and logistic regressions assessed the relative contributions of biopsychosocial factors to the primary dependent variables of pain severity, pain interference, and opioid use. Results: Participants were 62% female and 66% White with a mean age of 59 ± 15 years, and 55% held a college degree or higher. Older age, African American or "other" race, sleep disturbance, and pain catastrophizing were significantly associated with higher pain severity (F(5,657) = 22.45; P ≤.001; R2 = 0.22). Depression, sleep disturbance, pain catastrophizing, lower emotional support, and higher pain severity were significantly associated with pain interference (F(5,653) = 9.47; P ≤.001; R2 = 0.44). Lastly, a poor cancer prognosis (Exp(B) = 1.62) and sleep disturbance (Exp(B) = 1.02) were associated with taking opioids, whereas identifying as Asian (Exp(B) = 0.48) or Hispanic (Exp(B) = 0.47) was associated with lower odds of using opioids. Conclusions: Modifiable psychological factors—specifically sleep disturbance, depression, and pain catastrophizing—were uniquely associated with pain and opioid use in patients with chronic pain and diverse cancer diagnoses. Future behavioral pain interventions that concurrently target sleep may improve pain among patients with cancer. Lay Summary: Feeling depressed, worrying about pain, and bad sleep are related to higher pain symptoms in individuals with chronic pain and cancer.Specifically, those who struggle to sleep have worse pain and use more opioids.Also, individuals who have a bad prognosis for their cancer are more likely to be using opioid pain medications.Although race and cancer are related to chronic pain in patients, psychological well‐being is also strongly related to this same pain. In this sample of 700 patients with chronic pain and cancer, psychological factors, including higher sleep disturbance, depression, and pain catastrophizing, are uniquely related to worse pain severity and interference but not to opioid use. Individuals with a poor cancer prognosis and worse sleep disturbance are more likely to be using opioids. [ABSTRACT FROM AUTHOR]

Abstract Background With increased governmental interest in value assessment of technologies and where medical device manufacturers are finding it increasingly necessary to become more familiar with economic evaluation methods, the study sought to explore the levels of health economics knowledge within small and medium-sized enterprises (SMEs) and to scope strategies they employ to demonstrate the value of their products to purchasers. Methods A short questionnaire was completed by participants attending one of five workshops on product development in the medical device sector that took place in England between 2007 and 2011. From all responses obtained, a large proportion of participants were based in SMEs (N = 43), and these responses were used for the analysis. Statistical analysis using non-parametric tests was performed on questions with approximately interval scales. Qualitative data from participant responses were analysed to reveal emerging themes. Results The questionnaire results revealed that 60% of SME participants (mostly company directors or managers, including product or project managers) rated themselves as having low or no knowledge of health economics prior to the workshops but the rest professed at least medium knowledge. Clinical trials and cost analyses or cost-effectiveness studies were the most highly cited means by which SMEs aim to demonstrate value of products to purchasers. Purchasers were perceived to place most importance on factors of safety, expert opinion, cost-effectiveness and price. However many companies did not utilise formal decision-making tools to prioritise these factors. There was no significant dependence of the use of decision-making tools in general with respect to professed knowledge of health economics methods. SMEs did not state a preference for any particular aspect of potential value when deciding whether to develop a product. A majority of SMEs stated they would use a health economics tool. Research and development teams or marketing and sales departments would most likely use one. Conclusion This study points to the need for further research into the education requirements of SMEs in the area of Health Technology Assessment (HTA) and also for investigation into how SMEs engage with existing HTA processes as required by assessors such as NICE.

Objectives: To review and synthesize the existing evidence on bereavement care, within the United Kingdom (UK), for ethnic minority communities in terms of barriers and facilitators to access; models of care; outcomes from, and satisfaction with, service provision. Design: A systematic review adopting a framework synthesis approach was conducted. An electronic search of the literature was undertaken in MEDLINE, Embase, PsycINFO, Social Work Abstract and CINAHL via EBSCO, Global Health, Cochrane library, the Trip database and ProQuest between 1995 and 2020. Search terms included bereavement care, ethnic minority populations and the UK setting. Results: From 3,185 initial records, following screening for eligibility, and full-text review of 164 articles, seven studies were identified. There was no research literature outlining the role of family, friends and existing networks; and a real absence of evidence about outcomes and levels of satisfaction for those from an ethnic minority background who receive bereavement care. From the limited literature, the overarching theme for barriers to bereavement care was 'unfamiliarity and irregularities'. Four identified subthemes were 'lack of awareness'; 'variability in support'; 'type and format of support'; and 'culturally specific beliefs'. The overarching theme for facilitators for bereavement care was 'accessibility' with the two subthemes being 'readily available information' and 'inclusive approaches'. Three studies reported on examples of different models of care provision. Conclusions: This review reveals a stark lack of evidence about bereavement care for ethnic minority populations. In particular, understanding more about the role of family, friends and existing support systems, alongside outcomes and satisfaction will begin to develop the evidence base underpinning current provision. Direct user-representation through proactive engagement and co-design approaches may begin to determine the most appropriate models and format of bereavement care for ethnic minority communities to inform service design and delivery. [ABSTRACT FROM AUTHOR]

Background: Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions. Aim: We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe. Design: Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used. Setting/participants: Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries. Results: A total of 48 transcripts were analyzed. Mean age was 37 (range 19–75) with equal numbers of men and women. Five themes emerged from the data: (1) caregivers are coordinators of emotional, practical, and health service matters; (2) caregiving comes at a personal social and financial cost; (3) practical and emotional support received and required; (4) experience of interacting and liaising with palliative care services; and (5) barriers and recommendations relating to the involvement of palliative care. Conclusions: The role of informal caregivers is multi-faceted, with participants reporting taking care of the majority of medical, physical, financial, and emotional needs of the care recipient, often in the face of sacrifices relating to employment, finances, and their own health and social life. Efforts to develop comprehensive cancer control plans in sub-Saharan Africa must take account of the increasing evidence of informal caregiver needs. [ABSTRACT FROM AUTHOR]

Introduction: Pain is a very frequent symptom that is reported by patients when they present to health professionals but remains undertreated or untreated, particularly in low-resource settings including Nigeria. Lack of training in pain management remains the most significant obstacle to pain treatment alongside an inadequate emphasis on pain education in undergraduate medical curricula, negatively impacting on subsequent care of patients. This study aimed to determine the effect of a 12-week structured e-Learning course on the knowledge of pain management among Nigerian undergraduate medical students. Methods: Prospective, multisite, pre-post study conducted across five medical colleges in Nigeria. Structured modules covering aspects of pain management were delivered on an e-Learning platform. Pre- and post-test self-assessments were carried out in the 12-week duration of the study. User experience questionnaires and qualitative interviews were conducted via instant messaging to evaluate user experiences of the platform. User experience data was analysed using the UEQ Data Analysis Tool and Framework Analysis. Results: A total of 216 of 659 eligible students completed all sections of the e-Learning course. Participant mean age was 23.52 years, with a slight female predominance (55.3%). Across all participants, an increase in median pre- and post-test scores occurred, from 40 to 60 (Z = 11.3, p<0.001, effect size = 1.3), suggestive of increased knowledge acquisition relating to pain management. Participants suggested e-Learning is a valuable approach to delivering pain education alongside identifying factors to address in future iterations. Conclusion: e-Learning approaches to pain management education can enhance traditional learning methods and may increase students' knowledge. Future iterations of e-Learning approaches will need to consider facilitating the download of data and content for the platform to increase user uptake and engagement. The platform was piloted as an optional adjunct to existing curricula. Future efforts to advocate and support integration of e-Learning for pain education should be two-fold; both to include pain education in the curricula of medical colleges across Nigeria and the use of e-Learning approaches to enhance teaching where feasible. [ABSTRACT FROM AUTHOR]

In cancer care, there are emerging information and communication technology systems being developed, enabling real-time information sharing between patients and health professionals. This study explored health professionals' and patients' perceptions of their engagement with an information and communication technology system for pain management to understand the mechanisms that could support implementation into routine palliative care practice. This was a qualitative study, embedded within a randomised control trial, using semi-structured face-to-face interviews. Data were analysed using thematic analysis. The role of health professionals was a key component to patient engagement with the information and communication technology system. Where patients engaged with the information and communication technology system, both patients and health professionals reported benefits to system use in addition to usual care. Implementation issues were identified that can be used to guide future system development to support pain management in the context of routine clinical care in palliative care services. Where interventions are dependent on multiple providers, collaborative working and consideration of the context within which they are set are needed. [ABSTRACT FROM AUTHOR]

PURPOSE: The use of health information technology (HIT) to support patient and health professional communication is emerging as a core component of modern cancer care. Approaches to HIT development for cancer care are often underreported, despite their implementation in complex, multidisciplinary environments, typically supporting patients with multifaceted needs. We describe the development and evaluation of an e-health tool for pain management in patients with advanced cancer, arising from collaboration between health researchers and a commercial software development company. METHODS: We adopted a research-led development process, involving patients with advanced cancer and their health professionals, focusing on use within real clinical settings. A software development approach (disciplined agile delivery) was combined with health science research methods (ie, diary studies, face-to-face interviews, questionnaires, prototyping, think aloud, process reviews, and pilots). Three software iterations were managed through three disciplined agile delivery phases to develop PainCheck and prepare it for use in a clinical trial. RESULTS: Findings from development phases (inception, elaboration, and construction) informed the design and implementation of PainCheck. During the transition phase, where PainCheck was evaluated in a randomized clinical trial, there was variation in the extent of engagement by patients and health professionals. Prior personal experience and confidence with HIT led to a gatekeeping effect among health professionals, who were reluctant to introduce PainCheck to patients. Patients who did use PainCheck seemed to benefit, and no usability issues were reported. CONCLUSION: Health science research methods seemed to help in the development of PainCheck, although a more rigorous application of implementation science methodologies might help to elucidate further the barriers and facilitators to adoption and inform an evidence-based plan for future implementation. [ABSTRACT FROM AUTHOR]

Pain experienced by advanced cancer patients is often poorly controlled due to inadequate assessment. We aimed to test an electronic pain monitoring system (PainCheck) with advanced cancer patients and health professionals. In all, 29 participants (13 patients and 16 health professionals (n = 16)) used PainCheck while thinking their thoughts aloud. After the think aloud, both groups were asked about their experiences. Think-aloud and semi-structured interview data were analysed using framework analysis. Both groups were generally positive about PainCheck and found it easy to understand but they had concerns about clinical integration. Their concerns related to impact on workload, how lack of response may affect patient care and ability to engage with and use the technology. PainCheck has the capacity to be useful in clinical practice. For integration to be successful, patients and health professionals need guidance on how to use PainCheck and the expectations of users need to be clarified. [ABSTRACT FROM AUTHOR]

Approaches to pain management using electronic systems are being developed for use in palliative care. This article explores palliative care patients' perspectives on managing and talking about pain, the role of technology in their lives and how technology could support pain management. Face-to-face interviews were used to understand patient needs and concerns to inform how electronic systems are developed. A total of 13 interviews took place with a convenience sample of community-based patients with advanced cancer receiving palliative care through a hospice. Data were analysed using framework analysis. Four metathemes emerged: Technology could be part of my care; I'm trying to understand what is going on; My pain is ever-changing and difficult to control; and I'm selective about who to tell about pain. Patients described technology as peripheral to existing processes of care. To be relevant, systems may need to take account of the complexity of a patient's pain experience alongside existing relationships with health professionals. [ABSTRACT FROM AUTHOR]

Introduction: Palliative care (PC) services in the African region need to adapt to manage rising numbers of patients with cancer or other life-limiting conditions. Mobile phone use in healthcare delivery (mHealth) is at an early stage of development for PC, but may provide new approaches to supporting patients regionally, particularly those with non-communicable diseases.Methods: We conducted an online survey of 51 PC providers across 21 countries in the African region to identify: (i) current mHealth use in PC service delivery; (ii) potential barriers to mHealth use; and (iii) provider priorities for research development.Results: mHealth approaches were reported across 71.4% of services in which respondents were based. Barriers to mHealth research include patients not having access to phones, mobile network access, and limited access to expertise and hardware required for mHealth. Research priorities were identified which included exploring ways of incorporating mHealth into patient care and ensuring access and relevance of mHealth for patients and health professionals.Discussion: mHealth approaches are present across PC services in the African region, but so too are barriers to their use. Further work is required to explore how existing mHealth activities might be further developed and aligned with priority areas for PC development. Crucially, user engagement that seeks to understand the preferences and priorities of patients with PC needs, their caregivers, and those involved in the provision of PC should remain central to these efforts. [ABSTRACT FROM AUTHOR]

Background: Understanding service provision for patients with advanced disease is a research priority, with a need to identify barriers that limit widespread integration of palliative care. Aim: To identify patient and organisational factors that influence the duration of hospice-based palliative care in the United Kingdom prior to death. Design: This is a retrospective cohort study. Setting/participants: A total of 64 UK hospices providing specialist palliative care inpatient beds and community services extracted data for all adult decedents (aged over 17 years) with progressive, advanced disease, with a prior referral (e.g. inpatient, community teams, and outpatient) who died between 1 January 2015 and 31 December 2015. Data were requested for factors relating to both the patient and hospice site. Results: Across 42,758 decedents, the median time from referral to death was 48 days. Significant differences in referral to death days were found for those with cancer (53 days) and non-cancer (27 days) (p < 0.0001). As age increases, the median days from referral to death decreases: for those under 50 years (78 days), 50-74 years (59 days), and 75 years and over (39 days) (p = 0.0001). An adjusted multivariable negative binomial model demonstrated increasing age persisting as a significant predictor of fewer days of hospice care, as did being male, having a missing ethnicity classification and having a non-cancer diagnosis (p < 0.001). Conclusion: Despite increasing rhetoric around early referral, patients with advanced disease are receiving referrals to hospice specialist palliative care very late in their illness trajectory. Age and diagnosis persist as determinants of duration of hospice specialist palliative care before death. [ABSTRACT FROM AUTHOR]

Introduction For patients with advanced cancer, research shows that pain is frequent, burdensome and undertreated. Evidence-based approaches to support cancer pain management have been developed but have not been implemented within the context of the UK National Health Service. This protocol is for a pragmatic multicentre randomised controlled trial (RCT) to assess feasibility, acceptability, effectiveness and costeffectiveness for a multicomponent intervention for pain management in patients with advanced cancer. Methods and analysis This trial will assess the feasibility of implementation and uptake of evidencebased interventions, developed and piloted as part of the Improving the Management of Pain from Advanced Cancer in the Community Programme grant, into routine clinical practice and determine whether there are potential differences with respect to patient-rated pain, patient pain knowledge and experience, healthcare use, quality of life and cost-effectiveness. 160 patients will receive either the intervention (usual care plus supported self-management) delivered within the oncology clinic and palliative care services by locally assigned community palliative care nurses, consisting of a self-management educational intervention and eHealth intervention for routine pain assessment and monitoring; or usual care. The primary outcomes are to assess implementation and uptake of the interventions, and differences in terms of pain severity. Secondary outcomes include pain interference, participant pain knowledge and experience, and cost-effectiveness. Outcome assessment will be blinded and patient-reported outcome measures collected via post at 6 and 12 weeks following randomisation. Ethics and dissemination This RCT has the potential to significantly influence National Health Service delivery to community-based patients with pain from advanced cancer. We aim to provide definitive evidence of whether two simple interventions delivered by community palliative care nurse in palliative care that support-self-management are clinically effective and cost-effective additions to standard community palliative care. [ABSTRACT FROM AUTHOR]

Introduction: Older adults show increased postural sway and a greater risk of falls when completing activities with high cognitive demands. While dual-task approaches have clarified an association between cognitive processes and postural control, it is unclear how manual ability, which is also required for the successful completion of cognitively demanding tasks (such as putting a key into a lock), affects this relationship. Method: Kinematic technology was used to explore the relationship between postural sway and manual control in healthy younger and older adults. Participants (n = 82) remained standing to complete a visual-motor tracking task on a tablet computer. Root mean square tracking error measured manual performance, and a balance board measured deviations in centre of pressure as a marker of postural sway. Results: Older adults displayed poorer manual accuracy and increased postural sway across all testing conditions. Conclusions: Cognitive capacity can interact with multiple task demands, and in turn affect postural sway in older adults. Improving our understanding of factors that influence postural control will assist falls-prevention efforts and inform clinical practice. [ABSTRACT FROM AUTHOR]

Background: Poor pain assessment is a barrier to effective pain control. There is growing interest internationally in the development and implementation of remote monitoring technologies to enhance assessment in cancer and chronic disease contexts. Findings describe the development and testing of pain monitoring systems, but research identifying the needs of health professionals to implement routine monitoring systems within clinical practice is limited. Aim: To inform the development and implementation strategy of an electronic pain monitoring system, PainCheck, by understanding palliative care professionals’ needs when integrating PainCheck into routine clinical practice. Design: Qualitative study using face-to-face interviews. Data were analysed using framework analysis Setting/participants: Purposive sample of health professionals managing the palliative care of patients living in the community Results: A total of 15 interviews with health professionals took place. Three meta-themes emerged from the data: (1) uncertainties about integration of PainCheck and changes to current practice, (2) appraisal of current practice and (3) pain management is everybody’s responsibility Conclusion: Even the most sceptical of health professionals could see the potential benefits of implementing an electronic patient-reported pain monitoring system. Health professionals have reservations about how PainCheck would work in practice. For optimal use, PainCheck needs embedding within existing electronic health records. Electronic pain monitoring systems have the potential to enable professionals to support patients’ pain management more effectively but only when barriers to implementation are appropriately identified and addressed. [ABSTRACT FROM AUTHOR]

Background: The need to improve coordination of care at end of life has driven electronic palliative care coordination systems implementation across the United Kingdom and internationally. No approaches for evaluating electronic palliative care coordination systems use in practice have been developed. Aim: This study outlines and applies an evaluation framework for examining how and when electronic documentation of advance care planning is occurring in end of life care services. Design: A pragmatic, formative process evaluation approach was adopted. The evaluation drew on the Project Review and Objective Evaluation methodology to guide the evaluation framework design, focusing on clinical processes. Setting/participants: Data were extracted from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city. All deaths (n = 1229) recorded on electronic palliative care coordination systems between April 2014 and March 2015 were included to determine the proportion of all deaths recorded, median number of days prior to death that key information was recorded and observations about routine data use. Results: The evaluation identified 26.8% of all deaths recorded on electronic palliative care coordination systems. The median number of days to death was calculated for initiation of an electronic palliative care coordination systems record (31 days), recording a patient's preferred place of death (8 days) and entry of Do Not Attempt Cardiopulmonary Resuscitation decisions (34 days). Where preferred and actual place of death was documented, these were matching for 75% of patients. Anomalies were identified in coding used during data entry on electronic palliative care coordination systems. Conclusion: This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines considerations for future evaluation. Future evaluations should consider work processes of health professionals using electronic palliative care coordination systems. [ABSTRACT FROM AUTHOR]