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Avoiding excessive dialysis-associated volume depletion may help preserve residual kidney function (RKF). To establish whether knowledge of the estimated normally hydrated weight from bioimpedance measurements (BI-NHW) when setting the post-hemodialysis target weight (TW) might mitigate rate of loss of RKF, we undertook an open label, randomized controlled trial in incident patients receiving HD, with clinicians and patients blinded to bioimpedance readings in controls. A total of 439 patients with over 500 ml urine/day or residual GFR exceeding 3 ml/min/1.73m2 were recruited from 34 United Kingdom centers and randomized 1:1, stratified by center. Fluid assessments were made for up to 24 months using a standardized proforma in both groups, supplemented by availability of BI-NHW in the intervention group. Primary outcome was time to anuria, analyzed using competing-risk survival models adjusted for baseline characteristics, by intention to treat. Secondary outcomes included rate of RKF decline (mean urea and creatinine clearance), blood pressure and patient-reported outcomes. There were no group differences in cause-specific hazard rates of anuria (0.751; 95% confidence interval (0.459, 1.229)) or sub-distribution hazard rates (0.742 (0.453, 1.215)). RKF decline was markedly slower than anticipated, pooled linear rates in year 1: -0.178 (-0.196, -0.159)), year 2: -0.061 (-0.086, -0.036)) ml/min/1.73m2/month. Blood pressure and patient-reported outcomes did not differ by group. The mean difference agreement between TW and BI-NHW was similar for both groups, Bioimpedance: -0.04 kg; Control: -0.25 kg. Thus, use of a standardized clinical protocol for fluid assessment when setting TW is associated with excellent preservation of RKF. Hence, bioimpedance measurements are not necessary to achieve this.
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Anuria , Fallo Renal Crónico , Humanos , Espectroscopía Dieléctrica/métodos , Diálisis Renal/efectos adversos , Diálisis Renal/métodos , Urea , Riñón , Fallo Renal Crónico/diagnóstico , Fallo Renal Crónico/terapia , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
Organ donation continues to be low among ethnic minorities in the United Kingdom (UK), especially within the South Asian community, with a disproportionate number of patients of South Asian ethnicity awaiting organ transplants. In 2020/21, Minority Ethnic (ME) patients comprised almost a third of the national transplant waiting list, highlighting the continued imbalance between the need for transplants in South Asian communities and the availability of suitable organs. Median waiting times for transplants show that, generally, white patients wait less time than ME patients; Only 39.5% of ME families consented to proceed with deceased organ donation when approached compared to 69% of white families. How to increase awareness among the South Asian community on the scarcity of organ donors continues to be a growing challenge facing the healthcare system in the UK and globally. This article reflects on the education strategy implemented using the Health Belief Model. It provides a detailed framework with which to consider the rationale that led to a specific behaviour, in this case organ donation among the three major ethnicities (i.e., Indian, Pakistani, Bangladeshi) within the South Asian community as part of a single study.
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Trasplante de Órganos , Obtención de Tejidos y Órganos , Humanos , Personas del Sur de Asia , Pueblo Asiatico , Donantes de Tejidos , Reino UnidoRESUMEN
BACKGROUND: Services for patients with kidney disease underwent radical adaptations in response to the COVID-19 pandemic. We undertook an online national survey of UK kidney centres to understand the nature, range, and degree of variation in these changes and to explore factors contributing to differing practice. METHODS: The survey was designed by a multidisciplinary team of kidney professionals, service users and researchers. It enquired about centre services and staffing, including psychosocial provision, and changes to these in response to the COVID-19 pandemic. Links to the survey were sent to all 68 UK kidney centres and remained active from December 2021 to April 2022, and a revised version to nurses in late 2022 for additional data. Quantitative data were analysed descriptively. Content analysis on free-text responses identified common themes. RESULTS: Analysable responses were received from 41 out of the 68 UK centres (60%), with partial data from an additional 7 (11%). Adaptations were system-wide and affected all aspects of service provision. Some changes were almost universal such as virtual consultations for outpatient appointments, with significant variation in others. Outpatient activity varied from fully maintained to suspended. Many centres reduced peritoneal dialysis access provision but in some this was increased. Centres considered that changes to transplant surgical services and for patients with advanced CKD approaching end-stage kidney disease had the greatest impact on patients. Few centres implemented adjustments aimed at vulnerable and underrepresented groups, including the frail elderly, people with language and communication needs, and those with mental health needs. Communication issues were attributed to rapid evolution of the pandemic, changing planning guidance and lack of resources. Staffing shortages, involving all staff groups particularly nurses, mainly due to COVID-19 infection and redeployment, were compounded by deficiencies in staffing establishments and high vacancy levels. Centres cited three main lessons influencing future service delivery, the need for service redesign, improvements in communication, and better support for staff. CONCLUSION: Kidney centre responses to the pandemic involved adaptations across the whole service. Though some changes were almost universal, there was wide variation in other areas. Exploring the role of centre characteristics may help planning for potential future severe service disruptions.
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COVID-19 , Insuficiencia Renal Crónica , Humanos , Anciano , COVID-19/epidemiología , Pandemias , Diálisis Renal , Insuficiencia Renal Crónica/epidemiología , Insuficiencia Renal Crónica/terapia , Riñón , Reino Unido/epidemiologíaRESUMEN
The growing older population with advanced chronic kidney disease (ACKD stages 4-5) poses a challenge for healthcare worldwide. The high prevalence of frailty and associated adverse health outcomes highlights concerns for management and interventions specific to this population. The aim was to objectively review the evidence relating to older people (≥65 years) living with frailty and ACKD. More specifically how frailty is identified, what interventions have been studied and what outcomes have been reported including outcomes important to patients, families and carers. A scoping review was undertaken following the PRISMA-Scr guidelines. Nine databases were searched and a review team of five people followed a process using defined inclusion and exclusion criteria. Data were then analysed to answer the specific questions of the review. The World Health Organization's International Classification of Functioning Disability and Health was used to map outcomes across the domains. A total of 90 studies were included. The most reported frailty measure was the frailty phenotype. The most reported outcomes were mortality, hospitalisation and healthcare utilisation. Health-related quality of life was the most common patient-reported outcome measure. There were few intervention studies and limited evidence of patient and carer perspectives. This scoping review highlights important areas for further research in older people living with frailty and ACKD. This includes a 'gold standard' measure for identifying frailty, interventions and improvements in outcome measures that matter to patients (including studies that focus on carers and carer burden) and priority setting for future research.
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Fragilidad , Insuficiencia Renal Crónica , Humanos , Cuidadores , Fragilidad/diagnóstico , Fragilidad/terapia , Evaluación de Resultado en la Atención de Salud , Calidad de Vida , Insuficiencia Renal Crónica/diagnóstico , Insuficiencia Renal Crónica/terapiaRESUMEN
AIMS: To explore the employment, work productivity, activity impairment, and sustainability of work of Saudi patients with chronic kidney disease (CKD) on haemodialysis (HD). BACKGROUND: Failure to address CKD-related challenges may cause HD patients to lose their job, create a lack of compassion from co-workers and receive discrimination hindering progress in their profession. DESIGN: This is a cross-sectional explanatory sequential mixed-methods study. METHODS: A convenience sample of 130 CKD patients was surveyed in the quantitative phase using the 'Short-Form Health Survey' and 'Work Productivity and Activity Impairment Questionnaire.' For the qualitative phase, face-to-face, semi-structured interviews took place with 16 CKD patients. Data were collected in 2017. RESULTS: The respondents reported poor physical and mental health. Both employed and unemployed respondents reported moderate levels of work productivity. Better physical health was related to an increased likelihood of being employed. Physical health was negatively correlated with presenteeism, whereas mental health was negatively associated with activity impairment. Five key themes emerged from the qualitative data: work retention, sustaining employment, suitability of work, losing the work and unemployment. CONCLUSIONS: Physical condition, personal distinctiveness, cultural and traditional aspects, and employment policies and approaches affect the employment status of CKD patients on HD.
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Calidad de Vida , Insuficiencia Renal Crónica , Estudios Transversales , Empleo , Humanos , Calidad de Vida/psicología , Diálisis Renal/psicología , Insuficiencia Renal Crónica/psicología , Arabia Saudita , Evaluación de Capacidad de TrabajoRESUMEN
BACKGROUND: Emerging evidence of psychosocial problems in CKD patients has led to an acceptance that a focus on the emotional wellbeing of the patient should be included in the provision of comprehensive CKD care. It is unclear if an increased attention for psychosocial needs in guidelines and policy documents has led to a rise in psychosocial staffing levels or change in composition of staff since the last workforce mapping in 2002. This paper offers a critical analysis and in-depth discussion of findings and their implications, in addition to providing an international perspective and exposing gaps in current knowledge. METHODS: Data on psychosocial staffing levels was taken from a survey based on the Scottish Renal Association's (SRA) staffing survey that was sent to all units in England, Wales and Northern-Ireland in 2016. In addition, data from a psychosocial staffing survey designed by and distributed via psychosocial professional groups was used. This data was then completed with Freedom of Information (FOI) requests and collated to describe the current renal psychosocial workforce in all 84 UK renal units. This was compared to results from the last renal workforce mapping in 2002. RESULTS: The results from this mapping show great variability in models of service provision, significant exceeding of benchmarks for staffing levels, and a change in staffing patterns over the past 15 years. Adult psychology services have increased in number, but provision remains low due to increased patient numbers, whereas adult social work and paediatric services have decreased. CONCLUSION: A lack in the provision of renal psychosocial services has been identified, together with the absence of a general service provision model. These findings provide a valuable benchmark for units, a context from which to review and monitor provision alongside patient need. Along with recommendations, this paper forms a foundation for future research and workforce planning. Research into best practice models of service provision and the psychosocial needs of CKD patients lies at the heart of the answers to many identified questions.
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Encuestas de Atención de la Salud/tendencias , Psicología/tendencias , Insuficiencia Renal Crónica/epidemiología , Insuficiencia Renal Crónica/psicología , Trabajadores Sociales , Recursos Humanos/tendencias , Femenino , Encuestas de Atención de la Salud/estadística & datos numéricos , Humanos , Masculino , Psicología/estadística & datos numéricos , Trabajadores Sociales/estadística & datos numéricos , Reino Unido/epidemiología , Recursos Humanos/estadística & datos numéricosRESUMEN
The lingering culture among Javanese people cannot be separated from religion, influencing how they perceive any factors that might play a role in managing any health condition. This present study aimed in exploring the perceptions and experiences of religion and culture in performing daily self-care among Javanese Muslim with type 2 diabetes. A qualitative study with thematic content analysis method utilizing in-depth semi-structured interviews was undertaken to explore the perceptions and experiences of Javanese Muslim with diabetes managing their daily self-care activity. Convenient samples of 24 participants were selected to gain a richer understanding of self-care activity. The study identified one main theme of 'maintaining harmony' with comprised of two sub-themes: 'surrender and accept', and 'keep trying and leave the rest to Allah, a concept of tawakkal'. The first sub-theme consists of categories of: nerimo ing pandum, or accepting with sincerity, and tepo seliro, or being tolerance with others. The second sub-theme consists of three categories: being independent, social ties, and embracing Allah. The study also reveals the importance of Pengajian and Persadia as social resources in enhancing the capability to better self-care the condition. Thus, it also reveals the need to further develop diabetes education programmes in collaboration with religious leaders and health professionals to promote self-care to complement religious practice: Tawakkal or 'Keep trying and leave the rest to Allah'.
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Cultura , Diabetes Mellitus Tipo 2/terapia , Islamismo/psicología , Autocuidado , Adulto , Anciano , Diabetes Mellitus Tipo 2/etnología , Diabetes Mellitus Tipo 2/psicología , Humanos , Indonesia/epidemiología , Entrevistas como Asunto , Persona de Mediana Edad , Investigación Cualitativa , Automanejo/psicología , Apoyo Social , Factores SocioeconómicosRESUMEN
Interprofessional learning (IPL) can influence affective domain development of students through teaching activities that facilitate learning with, from, and about other professions. Current quantitative evidence offers limited explanation of how this learning is achieved within IPL programmes. This article tests a conceptual framework drawn from theories on IPL and affective domain development (attitudes, values, and behaviours) to explain what works for whom, when, and in what circumstances. The objectives of the study were twofold: to evaluate the impact of the IPL programme on the student's attitudes and values, and to identify behaviour changes in clinical practice towards interprofessional working. Using an action research approach, based in practice, an IPL programme was delivered over 6 weeks. Students from five professions, nursing, radiography, physiotherapy, social work, and podiatry (n = 63), participated over the two action research cycles and in semi-structured focus groups (n = 37). The recorded personal experiences of the IPL activities on the students were examined in relation to the type of activity; impact on the affective domain of learning (attitude, value, or behaviour) and self-reported outcome on application to their practice. Modification in affective domain development was measured to identification or internalisation stage for 30 of the students. Self-reported outcomes on application to practice included direct impact on patient care, personal resilience building, improved communication, and ability to challenge practice. This article presents a conceptual framework not evident in current research, in regard to what IPL works for whom, in what circumstances, and when. IPL activities that address a personal reward or incentive and are delivered over four weeks, imitating 'circles of care,' that explore self-assessment, team building, and reflection can lead to sustained change in values, attitudes, and behaviours.
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Actitud del Personal de Salud , Relaciones Interprofesionales , Aprendizaje , Estudiantes del Área de la Salud/psicología , Conducta , Comunicación , Conducta Cooperativa , Grupos Focales , Humanos , Teoría PsicológicaRESUMEN
BACKGROUND: Preserved residual kidney function (RKF) and normal fluid status are associated with better patient outcomes in incident haemodialysis patients. The objective of this trial is to determine whether using bioimpedance technology in prescribing the optimal post-dialysis weight can reduce the rate of decline of RKF and potentially improve patient outcomes. METHODS/DESIGN: 516 pateints commencing haemodialysis, aged >18 with RKF of > 3 ml/min/1.73 m2 or a urine volume >500 ml per day or per the shorter inter-dialytic period will be consented and enrolled into a pragmatic, open-label, randomized controlled trial. The intervention is incorporation of bioimpedance spectroscopy (BI) determination of normally hydrated weight to set a post-dialysis target weight that limits volume depletion, compared to current standard practice. Clinicians and participants will be blinded to BI measures in the control group and a standardized record capturing management of fluid status will be used in all participants. Primary outcome is preservation of residual kidney function assessed as time to anuria (≤100 ml/day or ≤200 ml urine volume in the short inter-dialytic period). A sample size of 516 was based upon a cumulative incidence of 30% anuria in the control group and 20% in the treatment group and 11% competing risks (death, transplantation) over 10 months, with up to 2 years follow-up. Secondary outcomes include rate of decline in small solute clearance, significant adverse events, hospitalization, loss of vascular access, cardiovascular events and interventions, dialysis efficacy and safety, dialysis-related symptoms and quality of life. Economic evaluation will be carried out to determine the cost-effectiveness of the intervention. Analyses will be adjusted for patient characteristics and dialysis unit practice patterns relevant to fluid management. DISCUSSION: This trial will establish the added value of undertaking BI measures to support clinical management of fluid status and establish the relationship between fluid status and preservation of residual kidney function in incident haemodialysis patients. TRIAL REGISTRATION: ISCCTN Number: 11342007 , completed 26/04/2016; NIHR Portfolio number: CPMS31766; Sponsor: Keele University.
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Espectroscopía Dieléctrica/métodos , Fluidoterapia/métodos , Diálisis Renal/métodos , Insuficiencia Renal/diagnóstico , Insuficiencia Renal/terapia , Desequilibrio Hidroelectrolítico/diagnóstico , Desequilibrio Hidroelectrolítico/terapia , Adulto , Anciano , Anciano de 80 o más Años , Terapia Combinada/métodos , Femenino , Humanos , Pruebas de Función Renal/métodos , Masculino , Persona de Mediana Edad , Calidad de Vida , Insuficiencia Renal/complicaciones , Reproducibilidad de los Resultados , Sensibilidad y Especificidad , Resultado del Tratamiento , Desequilibrio Hidroelectrolítico/complicaciones , Adulto JovenRESUMEN
Objectives: Cultural and communication differences faced by South-Asian (SA) ethnic minority groups have led to challenges in the delivery of health care and complex management of long-term conditions (LTCs). We aim to explore the use of text-messaging in SA communities, through the Florence (FLO) health messaging system utilised within U.K. health sectors, to enhance positive health behaviours and self-management. Methods: A mixed-methods approach was used for this study involving two phases. Phase 1 includes the administration of the patient activation measure to assess SA patient level of skills, knowledge, and confidence to self-manage their LTC; whilst in Phase 2 semi-structured interviews were conducted, exploring the experiences of users and non-users of FLO text messaging to promote self-management behaviours. Findings: Forty participants (Florence users (n = 20) and non-users (n = 20)) completed the patient activation survey once after using FLO, and took part in interviews. Differences were noted to exist between the two groups (p < .01). Users appeared to have higher activation levels and better self-management behaviours (p < .01 (p = .00). Interviews elicit participants' perceptions of the text messaging system, along with key themes relative to behavioural constructs: socio-demographical factors; influencing behaviour changes, self-management, and uptake of text messages amongst SA ethnic minorities. Conclusion: Text messaging and mHealth are being extensively used amongst general populations to monitor and enhance health. The study of SA patient experiences and their use of text messages within the United Kingdom (UK) remains scarce. Therefore, results from the study identify health beliefs that influence patient engagement with digital health interventions and their self-management. Developing policies and culturally appropriate education guidelines for healthcare practitioners can allow for the provision of culturally sensitive interventions tailored in terms of normative, cultural, and religious beliefs; which in turn will address crucial aspects including SA patient information and educational needs supporting their self-management journey.
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Rationale & Objective: Planning and delivering treatment pathways that integrate end-of-life care, frailty assessment, and enhanced supportive care is a service priority. Despite this, people with kidney failure are less likely to have an advance care plan and receive hospice and palliative care compared with other chronic illness populations. This is linked to health professionals feeling unskilled initiating conversations around future treatment and care options. This article describes research underpinning the development of a guide for kidney health professionals discussing end-of-life and advance care planning options with people with kidney failure and family members. Study Design: The study comprised 2 parts: an initial cross-sectional qualitative approach using in-depth interviews with older adults with kidney failure and (bereaved) carers followed by resource development with input from multiple stakeholders. Setting & Participants: Older adults with kidney failure and (bereaved) carers recruited from 2 renal units in the North of England and by online advertisements with national United Kingdom-based kidney patient charities. Resource development included input from co-applicants, independent advisory committee, patient and public involvement team, multidisciplinary health professionals and academics in the United Kingdom and Denmark. Analytical Approach: Thematic analysis was used to analyze the data. Results: Twenty-seven people were interviewed: older adults with kidney failure (n = 18), carers (n = 5), bereaved carers (n = 4). Five themes are described: the context within which end-of-life conversations take place, preferences for end-of-life treatment and care, family members' role and needs in supporting people with kidney failure at the end-of-life, expectations and experience of dialysis treatment, and beliefs and experiences of death and dying. Limitations: Participants were mainly White, British, and receiving hemodialysis. Conclusions: People with (lived) experience of kidney failure informed a guide which aims to build on health professionals existing skills and improve confidence having conversations about future treatment and care. Kidney teams have expressed interest implementing the guide in practice and within their broader communications training packages.
Delivering treatment pathways integrating end-of-life care, frailty assessment, and enhanced supportive care is a service priority. Despite this, people with kidney failure are less likely to have an advance care plan and receive hospice and palliative care compared with other chronic illness populations. This article describes how people with (lived) experience of kidney failure informed a guide to build on health professionals existing skills and improve confidence having conversations about future treatment and care. The study comprised 2 parts: cross-sectional qualitative approach using in-depth interviews with older adults with kidney failure and (bereaved) carers followed by resource development with input from coapplicants, an independent advisory committee, a patient and public involvement team, multidisciplinary health professionals, and academics.
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BACKGROUND: Depression is prevalent across the spectrum of Chronic Kidney Disease and associated with poorer outcomes. There is limited evidence regarding the most effective interventions and care pathways for depression in Chronic Kidney Disease. OBJECTIVES: To investigate how depression is identified and managed in adults with Chronic Kidney Disease. DESIGN: Scoping review. METHODS: Systematic search of eight databases with pre-defined inclusion criteria. Data relevant to the identification and/or management of depression in adults with Chronic Kidney Disease were extracted. RESULTS: Of 2147 articles identified, 860 were included. Depression was most identified using self-report screening tools (n = 716 studies, 85.3%), with versions of the Beck Depression Inventory (n = 283, 33.7%) being the most common. A total of 123 studies included data on the management of depression, with nonpharmacological interventions being more frequently studied (n = 55, 45%). Cognitive Behavioural Therapy (n = 15) was the most common nonpharmacological intervention, which was found to have a significant effect on depressive symptoms compared to controls (n = 10). However, how such approaches could be implemented as part of routine care was not clear. There was limited evidence for antidepressants use in people with Chronic Kidney Disease albeit in a limited number of studies. CONCLUSIONS: Depression is commonly identified using validated screening tools albeit differences exist in reporting practices. Evidence regarding the management of depression is mixed and requires better-quality trials of both pharmacological and nonpharmacological approaches. Understanding which clinical care pathways are used and their evidence, may help facilitate the development of kidney care specific guidelines for the identification and management of depression.
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Terapia Cognitivo-Conductual , Insuficiencia Renal Crónica , Adulto , Humanos , Depresión/diagnóstico , Depresión/terapia , Insuficiencia Renal Crónica/complicaciones , Insuficiencia Renal Crónica/terapia , Antidepresivos/uso terapéutico , RiñónRESUMEN
BACKGROUND: Depression is common in people with chronic kidney disease, yet little is known about how depression is identified and managed as part of routine kidney care. OBJECTIVES: The primary objective was to survey all UK adult kidney centres to understand how depression is identified and managed. A secondary objective was to broadly describe the variability in psychosocial care. DESIGN: Online survey. METHODS: The survey comprised of three sections: (1) general kidney care, (2) psychological provision and (3) social work provision. RESULTS: 48/68 (71%) of centres responded to the general survey with 20 and 13 responses from psychological and social work module respectively. Only 31.4% reported having both in centre psychological and social work practitioners. Three centres reported no access to psychosocial provision. Of the 25 centres who reported on pathways, 36.0% reported having internal pathways for the identification and management of depression. Within services with psychological provision, screening for depression varied across modality/group (e.g., 7.1% in mild/moderate chronic kidney disease vs. 62.5% in kidney donors). Cognitive Behavioural Therapy and Acceptance and Commitment Therapy were the most common interventions offered. Most psychosocial services were aware of the National Institute for Health and Care Excellence guidelines for managing depression in long-term conditions (n = 18, 94.7%) yet few fully utilised (n = 6, 33.3%). Limited workforce capacity was evident. CONCLUSIONS: There is considerable variability in approaches taken to identify and treat depression across UK kidney services, with few services having specific pathways designed to detect and manage depression. Workforce capacity remains a significant issue.
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Depresión , Humanos , Reino Unido , Depresión/psicología , Depresión/terapia , Encuestas y Cuestionarios , Insuficiencia Renal Crónica/psicología , Insuficiencia Renal Crónica/terapia , Insuficiencia Renal Crónica/complicaciones , Masculino , Femenino , AdultoRESUMEN
INTRODUCTION: In March 2020, a pandemic state was declared due to SARS-COV-2 (COVID-19). Patients with kidney disease, especially those on replacement therapies, proved more susceptible to severe infection. This rapid literature review aims to help understand how the pandemic impacted patient experience of kidney care. METHODS: It was conducted in accordance with Cochrane Rapid Review interim guidance. Search terms, 'coronavirus', 'kidney care', and 'patient-reported experience' and terms with similar semantic meaning, identified 1,117 articles in Medline, Scopus, and Worldwide Science. Seventeen were included in the narrative synthesis. RESULTS: The findings were summarised into three themes: remote consultation and telemedicine (n = 9); psychosocial impact (n = 2); and patient satisfaction and patient-reported experience (n = 6). Patients were mostly satisfied with remote consultations, describing them as convenient and allowing avoidance of hospital visits. Anxieties included missing potentially important clinical findings due to lack of physical examination, poor digital literacy, and technical difficulties. Psychosocial impact differed between treatment modalities-transplant recipients expressing feelings of instability and dread of having to return to dialysis, and generally, were less satisfied, citing reduced ability to work and difficulty accessing medications. Those on home dialysis treatments tended to feel safer. Findings focused on aspects of patient experience of kidney care during the pandemic rather than a holistic view. CONCLUSIONS: There was little direct evaluation of modality differences and limited consideration of health inequalities in care experiences. A fuller understanding of these issues would guide policy agendas to support patient experience during future public health crises.
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COVID-19 , Satisfacción del Paciente , Telemedicina , Humanos , COVID-19/epidemiología , COVID-19/psicología , Enfermedades Renales/terapia , Enfermedades Renales/psicología , Trasplante de Riñón , Consulta RemotaRESUMEN
INTRODUCTION: Personalised Exercise-Rehabilitation FOR people with Multiple long-term conditions (PERFORM) is a research programme that seeks to develop and evaluate a comprehensive exercise-based rehabilitation intervention designed for people with multimorbidity, the presence of multiple long-term conditions (MLTCs). This paper describes the protocol for a randomised trial to assess the feasibility and acceptability of the PERFORM intervention, study design and processes. METHODS AND ANALYSIS: A multicentre, parallel two-group randomised trial with individual 2:1 allocation to the PERFORM exercise-based intervention plus usual care (intervention) or usual care alone (control). The primary outcome of this feasibility trial will be to assess whether prespecified progression criteria (recruitment, retention, intervention adherence) are met to progress to the full randomised trial. The trial will be conducted across three UK sites and 60 people with MLTCs, defined as two or more LTCs, with at least one having evidence of the beneficial effect of exercise. The PERFORM intervention comprises an 8-week (twice a week for 6 weeks and once a week for 2 weeks) supervised rehabilitation programme of personalised exercise training and self-management education delivered by trained healthcare professionals followed by two maintenance sessions. Trial participants will be recruited over a 4.5-month period, and outcomes assessed at baseline (prerandomisation) and 3 months postrandomisation and include health-related quality of life, psychological well-being, symptom burden, frailty, exercise capacity, physical activity, sleep, cognition and serious adverse events. A mixed-methods process evaluation will assess acceptability, feasibility and fidelity of intervention delivery and feasibility of trial processes. An economic evaluation will assess the feasibility of data collection and estimate the costs of the PERFORM intervention. ETHICS AND DISSEMINATION: The trial has been given favourable opinion by the West Midlands, Edgbaston Research Ethics Service (Ref: 23/WM/0057). Participants will be asked to give full, written consent to take part by trained researchers. Findings will be disseminated via journals, presentations and targeted communications to clinicians, commissioners, service users and patients and the public. TRIAL REGISTRATION NUMBER: ISRCTN68786622. PROTOCOL VERSION: 2.0 (16 May 2023).
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Calidad de Vida , Automanejo , Humanos , Estudios de Factibilidad , Terapia por Ejercicio , Ejercicio Físico , Análisis Costo-Beneficio , Ensayos Clínicos Controlados Aleatorios como Asunto , Estudios Multicéntricos como AsuntoRESUMEN
Background: It remains unclear how to meaningfully classify people living with multimorbidity (multiple long-term conditions (MLTCs)), beyond counting the number of conditions. This paper aims to identify clusters of MLTCs in different age groups and associated risks of adverse health outcomes and service use. Methods: Latent class analysis was used to identify MLTCs clusters in different age groups in three cohorts: Secure Anonymised Information Linkage Databank (SAIL) (n = 1,825,289), UK Biobank (n = 502,363), and the UK Household Longitudinal Study (UKHLS) (n = 49,186). Incidence rate ratios (IRR) for MLTC clusters were computed for: all-cause mortality, hospitalisations, and general practice (GP) use over 10 years, using <2 MLTCs as reference. Information on health outcomes and service use were extracted for a ten year follow up period (between 01st Jan 2010 and 31st Dec 2019 for UK Biobank and UKHLS, and between 01st Jan 2011 and 31st Dec 2020 for SAIL). Findings: Clustering MLTCs produced largely similar results across different age groups and cohorts. MLTC clusters had distinct associations with health outcomes and service use after accounting for LTC counts, in fully adjusted models. The largest associations with mortality, hospitalisations and GP use in SAIL were observed for the "Pain+" cluster in the age-group 18-36 years (mortality IRR = 4.47, hospitalisation IRR = 1.84; GP use IRR = 2.87) and the "Hypertension, Diabetes & Heart disease" cluster in the age-group 37-54 years (mortality IRR = 4.52, hospitalisation IRR = 1.53, GP use IRR = 2.36). In UK Biobank, the "Cancer, Thyroid disease & Rheumatoid arthritis" cluster in the age group 37-54 years had the largest association with mortality (IRR = 2.47). Cardiometabolic clusters across all age groups, pain/mental health clusters in younger groups, and cancer and pulmonary related clusters in older age groups had higher risk for all outcomes. In UKHLS, MLTC clusters were not significantly associated with higher risk of adverse outcomes, except for the hospitalisation in the age-group 18-36 years. Interpretation: Personalising care around MLTC clusters that have higher risk of adverse outcomes may have important implications for practice (in relation to secondary prevention), policy (with allocation of health care resources), and research (intervention development and targeting), for people living with MLTCs. Funding: This study was funded by the National Institute for Health and Care Research (NIHR; Personalised Exercise-Rehabilitation FOR people with Multiple long-term conditions (multimorbidity)-NIHR202020).
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Background: Almost half of the global population face significant challenges from long-term conditions (LTCs) resulting in substantive health and socioeconomic burden. Exercise is a potentially key intervention in effective LTC management. Methods: In this overview of systematic reviews (SRs), we searched six electronic databases from January 2000 to October 2023 for SRs assessing health outcomes (mortality, hospitalisation, exercise capacity, disability, frailty, health-related quality of life (HRQoL), and physical activity) related to exercise-based interventions in adults (aged >18 years) diagnosed with one of 45 LTCs. Methodological quality was assessed using AMSTAR-2. International Prospective Resister of Systematic Reviews (PROSPERO) ID: CRD42022319214. Findings: Forty-two SRs plus three supplementary RCTs were included, providing 990 RCTs in 936,825 people across 39 LTCs. No evidence was identified for six LTCs. Predominant outcome domains were HRQoL (82% of SRs/RCTs) and exercise capacity (66%); whereas disability, mortality, physical activity, and hospitalisation were less frequently reported (≤25%). Evidence supporting exercise-based interventions was identified in 25 LTCs, was unclear for 13 LTCs, and for one LTC suggested no effect. No SRs considered multimorbidity in the delivery of exercise. Methodological quality varied: critically-low (33%), low (26%), moderate (26%), and high (12%). Interpretation: Exercise-based interventions improve HRQoL and exercise capacity across numerous LTCs. Key evidence gaps included limited mortality and hospitalisation data and consideration of multimorbidity impact on exercise-based interventions. Funding: This study was funded by the National Institute for Health and Care Research (NIHR; Personalised Exercise-Rehabilitation FOR people with Multiple long-term conditions (multimorbidity)-NIHR202020).
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Background: People living with chronic kidney disease (CKD) need to be able to live well with their condition. The provision of psychosocial interventions (psychological, psychiatric and social care) and physical rehabilitation management is variable across England, as well as the rest of the UK. There is a need for clear recommendations for standards of psychosocial and physical rehabilitation care for people living with CKD, and guidance for the commissioning and measurement of these services. The National Health Service (NHS) England Renal Services Transformation Programme (RSTP) supported a programme of work and modified Delphi process to address the management of psychosocial and physical rehabilitation care as part of a larger body of work to formulate a comprehensive commissioning toolkit for renal care services across England. We sought to achieve expert consensus regarding the psychosocial and physical rehabilitation management of people living with CKD in England and the rest of the UK. Methods: A Delphi consensus method was used to gather and refine expert opinions of senior members of the kidney multi-disciplinary team (MDT) and other key stakeholders in the UK. An agreement was sought on 16 statements reflecting aspects of psychosocial and physical rehabilitation management for people living with CKD. Results: Twenty-six expert practitioners and other key stakeholders, including lived experience representatives, participated in the process. The consensus (>80% affirmative votes) amongst the respondents for all 16 statements was high. Nine recommendation statements were discussed and refined further to be included in the final iteration of the 'Systems' section of the NHS England RSTP commissioning toolkit. These priority recommendations reflect pragmatic solutions that can be implemented in renal care and include recommendations for a holistic wellbeing assessment for all people living with CKD who are approaching dialysis, or who are at listing for kidney transplantation, which includes the use of validated measurement tools to assess the need for further intervention in psychosocial and physical rehabilitation management. It is recommended that the scores from these measurement tools be included in the NHS England Renal Data Dashboard. There was also a recommendation for referral as appropriate to NHS Talking Therapies, psychology, counselling or psychotherapy, social work or liaison psychiatry for those with identified psychosocial needs. The use of digital resources was recommended to be used in addition to face-to-face care to provide physical rehabilitation, and all healthcare professionals should be educated to recognize psychosocial and physical rehabilitation needs and refer/sign-post people with CKD to appropriate services. Conclusion: There was high consensus amongst senior members of the kidney MDT and other key stakeholders, including those with lived experience, in the UK on all aspects of the psychosocial and physical rehabilitation management of people living with CKD. The results of this process will be used by NHS England to inform the 'Systems' section of the commissioning toolkit and data dashboard and to inform the National Standards of Care for people living with CKD.
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INTRODUCTION: Patients living with progressive chronic kidney disease may face a variety of ongoing physical, emotional, financial and/or social challenges along the disease pathway. In most UK renal units, psychosocial support has traditionally been provided by a renal social worker. However, in recent years, the numbers of renal social workers have been declining. The specialised role is poorly understood and there is no UK research about the profession. To inform future research and guide workforce planning, this study presents the first-ever exploration of the UK renal social worker role. It aimed to map the profession's activities and reasons for involvement in patient care, as well as providing an initial evaluation of that involvement on patient wellbeing. METHODS AND ANALYSIS: This mixed-method study recruited adult renal social workers (n = 14), who completed diaries over a 4-month period, participated in a focus group, and provided secondary data (caseload data and audit files where available) to give insight into their role. The evaluation of social work involvement on patient wellbeing used a pre-post intervention design. It measured distress, anxiety and depression levels as captured by the Distress Thermometer and Emotional Thermometers. A total of 161 patients completed the pre-involvement questionnaire, and 87 (55%) returned the post-involvement questionnaire. RESULTS AND CONCLUSION: The renal social worker role is creative, broad and fluid, with variations in roles linked to differences in employment and funding arrangements, configurations of the wider multidisciplinary renal team, level of standardisation of psychosocial care, availability of community services, and staff-to-patient ratios. Renal social work is different from statutory social work, and renal social workers are generally able to offer continuous rather than episodic care and support patients that would not meet strict local authority eligibility criteria. The findings showed that this support leads to significantly reduced distress and anxiety.
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Apoyo Social , Trabajadores Sociales , Adulto , Humanos , Servicio Social , Reino Unido , Recursos HumanosRESUMEN
OBJECTIVES: This study used a mixed-method approach to explore cultural and ethnic influences on the perception of, and decision to engage with or not to engage with, physical activity and exercise therapy in patients with chronic kidney disease (CKD). DESIGN: Qualitative research was conducted through the use of semistructured interviews and focus groups. Self-reported physical activity levels were measured using the General Practice Physical Activity Questionnaire (GPPAQ), and self-efficacy for exercise with Bandura's Self-Efficacy for Exercise Scale. SETTING: This study was conducted in a non-clinical setting of a single National Health Service Hospital Trust between April 2018 and July 2019. PARTICIPANTS: Participants >18 years of age with a diagnosis of CKD, from black African, black Caribbean, South Asian or white ethnicity were eligible for the study. 84 patients with a diagnosis of CKD (stages 2-5), aged 25-79 (mean age 57) were recruited. Semistructured interviews (n=20) and six single-sex, ethnic-specific focus group discussions were undertaken (n=36). OUTCOMES: Primary outcome was to explore the perceptions, attitudes and values about exercise and physical activity in different ethnic groups through qualitative interviews, analysed using an inductive thematic analysis approach. Questionnaires were analysed using Pearson correlation to determine if there was a significant relationship between the self-efficacy and GPPAQ levels. RESULTS: Qualitative analysis provided four primary themes: I am who I am, Change of identity, Influences to physical activity and exercise and Support and education. Quantitative analysis using Pearson correlation revealed a significant correlation between GPPAQ levels of activity and self-efficacy to regulate exercise behaviour (r=-0.40, p=0.001). CONCLUSION: Understanding the cultural, attitudes and beliefs of individuals with CKD from a variety of ethnic backgrounds is complex. Understanding of patients' experiences, thoughts and beliefs may be of relevance to clinicians when designing CKD exercise services. TRIAL REGISTRATION NUMBER: NCT03709212; Pre-results.