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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.
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Planificación Anticipada de Atención , Investigación Cualitativa , Humanos , Cuidados Paliativos , Registros Electrónicos de Salud , Masculino , Femenino , Inglaterra , Reino Unido , Entrevistas como AsuntoRESUMEN
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.
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Neoplasias , Enfermería Oncológica , Humanos , Neoplasias/enfermería , Adulto , Femenino , Masculino , Persona de Mediana Edad , Cuidados Paliativos , Investigación Cualitativa , Adaptación Psicológica , Turquía , Entrevistas como AsuntoRESUMEN
Internationally, the quality of death certification is poor although there are multiple efforts underway to improve the process. In England, a new medical certification system has been proposed to improve the quality of data. We surveyed general practitioners (n = 95) across the West Yorkshire area of England to appraise their views regarding whether further possible changes to the death certification system could promote their quality.
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Background: Despite the availability of effective vaccines, human papillomavirus (HPV) vaccine uptake remains low in most resource-limited settings including Nigeria. Mobile health technology (mHealth) may empower patients to control their health, reduce inequalities, and improve the uptake of HPV vaccination. Aim: The "mHealth-HPVac" study will assess the effects of mHealth using short text messages on the uptake of HPV vaccination among mothers of unvaccinated girls aged 9-14 years and also determine the factors influencing the uptake of HPV vaccination among these mothers. Methods: This protocol highlights a randomised controlled trial involving women aged 25-65 years who will be enrolled on attendance for routine care at the General Outpatient clinics of Lagos University Teaching Hospital, Lagos, Nigeria between July and December 2024. At baseline, n=224 women will be randomised to either a short text message or usual care (control) arm. The primary outcome is vaccination of the participant's school-age girl(s) at any time during the 6 months of follow-up. The associations between any two groups of continuous variables will be tested using the independent sample t-test (normal distribution) or the Mann-Whitney U test (skewed data) and that of two groups of categorical variables with Chi-square (X2) or Fisher's exact test where appropriate. Using the multivariable binary logistic regression model, we will examine the effects of all relevant sociodemographic and clinical variables on HPV vaccination uptake among mothers of unvaccinated but vaccine-eligible school-age girls. Statistical significance will be defined as A P<0.05. Discussion: The mHealth-Cervix study will evaluate the impact of mobile technologies on HPV vaccination uptake among mothers of unvaccinated but vaccine-eligible school-age girls in Lagos, Nigeria as a way of contributing to the reduction in the wide disparities in cervical cancer incidence through primary prevention facilitated using health promotion to improve HPV vaccination uptake. Registration: PACTR202406727470443 (6th June 2024).
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BACKGROUND: Despite the availability of effective vaccines, human papillomavirus (HPV) vaccine uptake remains low in most resource-limited settings including Nigeria. Mobile health technology (mHealth) has the potential to empower patients to manage their health, reduce health disparities, and enhance the uptake of HPV vaccination. AIM: The "mHealth-HPVac" study will assess the effects of mHealth using short text messages on the uptake of HPV vaccination among mothers of unvaccinated girls aged 9-14 years and also determine the factors influencing the uptake of HPV vaccination among these mothers. METHODS: This protocol highlights a randomised controlled trial involving women aged 25-65 years who will be enrolled on attendance for routine care at the General Outpatient clinics of Lagos University Teaching Hospital, Lagos, Nigeria between July and December 2024. At baseline, n = 123 women will be randomised to either a short text message or usual care (control) arm. The primary outcome is vaccination of the participant's school-age girl(s) at any time during the 6 months of follow-up. The associations between any two groups of continuous variables will be assessed using the independent sample t-test for normally distributed data, or the Mann-Whitney U test for skewed data. For two groups of categorical variables, the Chi-square (X2) test or Fisher's exact test will be used, as appropriate. Using the multivariable binary logistic regression model, we will examine the effects of all relevant sociodemographic and clinical variables on HPV vaccination uptake among mothers of unvaccinated but vaccine-eligible school-age girls. Statistical significance will be reported as P < 0.05. DISCUSSION: The mHealth-Cervix study will evaluate the impact of mobile technologies on HPV vaccination uptake among mothers of unvaccinated but vaccine-eligible school-age girls in Lagos, Nigeria as a way of contributing to the reduction in the wide disparities in cervical cancer incidence through primary prevention facilitated using health promotion to improve HPV vaccination uptake. REGISTRATION: PACTR202406727470443 (6th June 2024).
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Madres , Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Telemedicina , Vacunación , Humanos , Femenino , Vacunas contra Papillomavirus/administración & dosificación , Adolescente , Nigeria , Niño , Adulto , Infecciones por Papillomavirus/prevención & control , Vacunación/estadística & datos numéricos , Vacunación/métodos , Persona de Mediana Edad , Envío de Mensajes de Texto , Aceptación de la Atención de Salud/estadística & datos numéricos , Anciano , Neoplasias del Cuello Uterino/prevención & control , Neoplasias del Cuello Uterino/virología , Virus del Papiloma HumanoRESUMEN
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 (https://osf.io/xnrg3). 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.
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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.
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Planificación Anticipada de Atención , Cuidadores , Grupos Focales , Investigación Cualitativa , Humanos , Cuidadores/psicología , Masculino , Femenino , Anciano , Persona de Mediana Edad , Anciano de 80 o más Años , Adulto , Difusión de la Información , Londres , Cuidado TerminalRESUMEN
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.
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Supervivientes de Cáncer , Humanos , Cognición , Consenso , Difusión de la Información , Medición de Resultados Informados por el PacienteRESUMEN
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.
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COVID-19 , Neoplasias , Humanos , COVID-19/epidemiología , Prueba de COVID-19 , Neoplasias/diagnóstico , Neoplasias/epidemiologíaRESUMEN
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.
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Neoplasias , Humanos , Pronóstico , Neoplasias/diagnóstico , Neoplasias/terapia , Medición de Resultados Informados por el Paciente , Atención a la Salud , Registros Electrónicos de SaludRESUMEN
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.
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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.
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Neoplasias del Cuello Uterino , Humanos , Femenino , Neoplasias del Cuello Uterino/diagnóstico , Neoplasias del Cuello Uterino/prevención & control , Detección Precoz del Cáncer , Países en Desarrollo , Investigación CualitativaRESUMEN
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.
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Traumatismos de la Médula Espinal , Accidente Cerebrovascular , Telerrehabilitación , Humanos , Nepal , Cuidados Posteriores , Alta del Paciente , Traumatismos de la Médula Espinal/rehabilitación , Accesibilidad a los Servicios de SaludRESUMEN
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.
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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.
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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.
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Cuidados Paliativos al Final de la Vida , Cuidado Terminal , Estudios Transversales , Electrónica , Humanos , Cuidados PaliativosRESUMEN
CONTEXT: A challenge facing the provision of palliative care in sub-Saharan Africa is a means of increasing coverage of services whilst maintaining quality. Developing an evidence base that reflects patients' experiences and expectations of palliative care services, the context within which services are provided, and the approaches adopted by services in caring for patients, could facilitate and inform the planning and development of patient-centered and responsive services. OBJECTIVES: To explore the experiences and expectations of palliative care for people living with advanced cancer in Nigeria, Uganda, and Zimbabwe. METHODS: A secondary qualitative analysis of in-depth interviews with 62 people with advanced cancer in Nigeria, Uganda, and Zimbabwe. Framework approach to thematic analysis of transcripts was adopted, focusing on patients' experiences and expectations when interacting with palliative care services, aligning reporting with the COnsolidated criteria for REporting Qualitative research (COREQ). RESULTS: Four main themes were generated from the analysis: 1) Condition and community as drivers of a multidimensional burden when living with advanced cancer; 2) The expectations and endeavors of palliative care to ameliorate the impact of cancer on physical, psychological and basic needs; 3) Processes and preferences for interacting and communicating with palliative care services, and; 4) Restoration of hope in the context of limited resources. CONCLUSION: Wide-ranging physical, psychological, social and financial impacts on participants were outlined. These concerns were largely met with compassionate and responsive care in the context of constrained resources. Study findings can inform evolving notions of patient-centred care for serious illnesses in the participating countries.
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Neoplasias , Cuidados Paliativos , Humanos , Nigeria , Cuidados Paliativos/métodos , Uganda , Zimbabwe , Motivación , Investigación Cualitativa , Neoplasias/terapiaRESUMEN
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.
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Personal Administrativo , Personal de Salud , Humanos , Atención a la SaludRESUMEN
OBJECTIVE: Cancer 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. METHODS: Participants 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. RESULTS: Participants 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. CONCLUSION: Targets 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.
Asunto(s)
Neoplasias , Cuidados Paliativos , Adulto , Análisis de Datos , Humanos , Neoplasias/terapia , Evaluación del Resultado de la Atención al Paciente , Investigación Cualitativa , ZimbabweRESUMEN
BACKGROUND: Nigeria has one of the worst health and development profiles globally. A weak health system, poor infrastructure, and varied socio-cultural factors are cited as inhibitors to optimal health system performance and improved maternal and child health status. eHealth has become a major solution to closing these gaps in health care delivery in low- and middle-income countries (LMICs). This research reports the use of satellite communication (SatCom) technology and the existing 3G mobile network for providing video training (VTR) for health workers and improving the digitization of healthcare data. OBJECTIVE: To evaluate whether the expected project outcomes that were achieved at the end-line evaluation of 2019 were sustained 12 months after the project ended. METHODS: From March 2017 to March 2019, digital innovations including VTR and data digitization interventions were delivered in 62 healthcare facilities in Ondo State, southwest Nigeria, most of which lacked access to a 3G mobile network. Data collection for the evaluation combined documents' review with quantitative data extracted from health facility registers, and 24 of the most significant change stories to assess the longevity of the outcomes and impacts of digital innovation in the four domains of healthcare: use of eHealth technology for data management, utilization of health facilities by patients, the standard of care, and staff attitude. Stories of the most significant changes were audio-recorded, transcribed for analysis, and categorized by the above domains to identify the most significant changes 12 months after the project closedown. RESULTS: Findings showed that four project outcomes which were achieved at end-line evaluation were sustained 12 months after project closedown namely: staff motivation and satisfaction; increased staff confidence to perform healthcare roles; improved standard of healthcare delivery; and increased adoption of eHealth innovations beyond the health sector. Conversely, an outcome that was reversed following the discontinuation of SatCom from health facilities is the availability of accurate and reliable data for decision-making. CONCLUSION: Digital technology can have lasting impacts on health workers, patients, and the health system, through improving data management for decision-making, the standard of maternity service delivery, boosting attendance at health facilities, and utilization of services. Locally driven investment is essential for ensuring the long-term survival of eHealth projects to achieve sustainable development goals (SDGs) in LMICs.