Abstract Background Identifying clusters of multiple long-term conditions (MLTCs), also known as multimorbidity, and their associated burden may facilitate the development of effective and cost-effective targeted healthcare strategies. This study aimed to identify clusters of MLTCs and their associations with long-term health-related quality of life (HRQoL) in two UK population-based cohorts. Methods Age-stratified clusters of MLTCs were identified at baseline in UK Biobank (n = 502,363, 54.6% female) and UKHLS (n = 49,186, 54.8% female) using latent class analysis (LCA). LCA was applied to people who self-reported ≥ 2 LTCs (from n = 43 LTCs [UK Biobank], n = 13 LTCs [UKHLS]) at baseline, across four age-strata: 18–36, 37–54, 55–73, and 74 + years. Associations between MLTC clusters and HRQoL were investigated using tobit regression and compared to associations between MLTC counts and HRQoL. For HRQoL, we extracted EQ-5D index data from UK Biobank. In UKHLS, SF-12 data were extracted and mapped to EQ-5D index scores using a standard preference-based algorithm. HRQoL data were collected at median 5 (UKHLS) and 10 (UK Biobank) years follow-up. Analyses were adjusted for available sociodemographic and lifestyle covariates. Results LCA identified 9 MLTC clusters in UK Biobank and 15 MLTC clusters in UKHLS. Clusters centred around pulmonary and cardiometabolic LTCs were common across all age groups. Hypertension was prominent across clusters in all ages, while depression featured in younger groups and painful conditions/arthritis were common in clusters from middle-age onwards. MLTC clusters showed different associations with HRQoL. In UK Biobank, clusters with high prevalence of painful conditions were consistently associated with the largest deficits in HRQoL. In UKHLS, clusters of cardiometabolic disease had the lowest HRQoL. Notably, negative associations between MLTC clusters containing painful conditions and HRQoL remained significant even after adjusting for number of LTCs. Conclusions While higher LTC counts remain important, we have shown that MLTC cluster types also have an impact on HRQoL. Health service delivery planning and future intervention design and risk assessment of people with MLTCs should consider both LTC counts and MLTC clusters to better meet the needs of specific populations.
For people receiving haemodialysis, a balance has to be struck between removing sufficient but not too much fluid during a treatment session and maintaining any remaining kidney function they might have. In the BISTRO trial, this study sought to establish if getting the balance right might be improved by the additional use of bioimpedance, a device that measures body fluid composition to help decide how much fluid to remove during dialysis. Designing and executing this trial, which incorporated complex and repeated trial procedures that would be dependent on participant engagement, presented challenges that demanded effective public and patient involvement. This study aimed to develop an effective public and patient involvement participation model, ensuring that the patient voice was heard by the Trial Management Group, with a Patient Advisory Group undertaking coproduction of all participant-facing documents and communications, including dissemination of the trial results, with the main purpose of maximising participant engagement in the study. An open-label randomised controlled trial in which 439 participants from 34 centres were allocated for regular assessments of their bodily fluid content with or without the use of bioimpedance measurements. Development of an effective public and patient involvement working model that was represented within the Trial Management Group, contributing to protocol design, selection of bioimpedance device, and coproduction of all participant-facing communications including dissemination of trial findings. Public and patient involvement contribution prior to trial initiation, description of the participant-facing communications, adherence to trial materials, dropout and dissemination of trial findings. Post-trial evaluation by research teams, Patient Advisory Group and co-applicants. An effective working model was developed which relied on remuneration of the public and patient involvement patient lead and use of social media (e.g. WhatsApp) to maximise inclusivity. The Patient Advisory Group coproduced with the Trial Management Group a series of communication postcards and newsletters and a web page to support the participants and disseminate the trial results that were highly rated by research teams, but not always passed on to trial participants. Participant adherence to the main trial outcomes was excellent (113.6% urine collections obtained). Potentially avoidable dropout was 14.4%, with 3.6% being clearly attributable to inability or unwillingness to comply with the trial procedures. Reflections by the Patient Advisory Group indicated that they felt valued, involved and listened to but anticipated more direct involvement with the trial participants, recommending that barriers to this be addressed during the trial design and set-up. Evaluation of public and patient involvement was retrospective and there was a lack of real-time assessment of the impact of public and patient involvement that might have supported a causative link between public and patient involvement interventions and the successful delivery of the trial. Public and patient involvement played an important role in the design, delivery and dissemination of the BISTRO trial. Key to this success was the close relationship between the Patient Advisory Group and the Trial Management Group. Given the complexity of the intervention, dropout was reasonably low and did not compromise trial findings, but reasons were not always clear. Prospective gathering of data to capture the impact of public and patient involvement is recommended and direct support for participants facilitated. This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme as award number 14/216/01.
Background Exercise and self-management support may be clinically effective and cost-effective treatments for a range of individual long-term conditions (LTCs), as they activate multiple beneficial physiological and psychological mechanisms. We aimed to develop a complex intervention to deliver exercise and self-management support for people with multiple LTCs (MLTCs). Methods Following the Person Based Approach to intervention development, we conducted ten co-development workshops with people with MLTCs, family and friends; healthcare providers; service commissioners and policymakers. The workshops iteratively identified the unmet needs of people with MLTCs and informed a programme theory outlining theoretical mechanisms of change and intervention strategies to change the targeted behaviours. They also identified ideas for efficient delivery and service providers’ training needs. Mixed methods feedback from the Personalised Exercise-Rehabilitation FOR people with Multiple long-term conditions (PERFORM) feasibility study (reported elsewhere) informed intervention refinement. Results A diverse group of stakeholders (26 people with MLTCs/supporters, 13 service providers, 16 experts in chronic illness and 14 service commissioners) helped to develop the PERFORM intervention. This included 16 supervised exercise sessions and 16 ‘Health and Wellbeing’ self-management support sessions, delivered in hospital or community settings over eight weeks, plus check-in sessions at four and six months. The self-management sessions covered maintenance of exercise/physical activity, healthy eating and managing common symptoms (pain, fatigue, breathlessness, stress). Conclusion The PERFORM intervention is a comprehensive, evidence-informed, theoretically driven self-management and exercise-based rehabilitation intervention, co-developed with people with MLTCs, service providers and service commissioners. PERFORM is now ready for evaluation regarding clinical effectiveness and cost-effectiveness.
Background Preservation of residual kidney function (RKF) in dialysis patients has been associated with improved survival. RKF in the BISTRO trial was relatively well preserved, and in this study, we describe its association with survival during the trial and extended follow-up. Methods RKF, measured as the average urea and creatinine clearance (GFR) or 24-hour urine volume, was assessed at baseline; 1, 2, and 3 months; and every three months for up to 2 years in incident hemodialysis patients. Time to event survival data or competing events (transplantation, modality change) was obtained for 50 months after enrollment via data linkage with the UK Renal Registry. Cox proportional hazards regression survival models, including those incorporating change in GFR from baseline as a time-varying variable and joint regression models for longitudinal and survival data (longitudinal models for GFR or urine volume), were used to explore the relationship of RKF preservation with survival. Analyses were adjusted for age, sex, comorbidity, and ethnicity. Results A total of 2919 measures of RKF were made in 387 patients from 32 UK dialysis units. Higher age and comorbidity score were associated with increased mortality in all models. Baseline GFR reduced the risk of death (hazard ratio [HR], 0.918; 95% confidence interval [CI], 0.844 to 0.999) per ml/min per 1.73 m(2). A greater fall in GFR and urine volume from baseline was associated with a nonsignificant increased risk of death, as visualized on spline plots. In the joint survival models, higher GFR (adjusted HR, 0.88; 95% CI, 0.80 to 0.97) or urine volume (adjusted HR, 0.75, 95% CI, 0.57 to 0.95/L) at any time point was associated with better survival. Conclusions Lower RKF during the first 2 years of hemodialysis is associated with an increased death risk for up to 50 months after dialysis initiation. This adds to a growing body of evidence that interventions to preserve RKF should be developed and tested in clinical trials.
OBJECTIVE:Existing exercise-based rehabilitation services, such as cardiac and pulmonary rehabilitation, are traditionally commissioned around single long-term conditions (LTCs) and therefore may not meet the complex needs of adults with multiple long-term conditions (MLTCs) or multimorbidity. The aim of this study was to assess the feasibility and acceptability of the newly developed personalised exercise-rehabilitation programme for people with multiple long-term conditions (PERFORM) and the trial methods. DESIGN:A parallel two-group mixed-methods feasibility randomised controlled trial (RCT) with embedded process and economic evaluation. SETTING:Three UK sites (two acute hospital settings, one community-based healthcare setting). PARTICIPANTS:60 adults with MLTCs (defined as the presence of ≥2 LTCs) with at least one known to benefit from exercise therapy were randomised 2:1 to PERFORM intervention plus usual care (PERFORM group) or usual care alone (control group). INTERVENTION:The intervention consisted of 8 weeks of supervised group-based exercise rehabilitation and structured self-care symptom-based support. PRIMARY AND SECONDARY OUTCOME MEASURES:Primary feasibility outcomes included: trial recruitment (percentage of a target of 60 participants recruited within 4.5 months), retention (percentage of participants with complete EuroQol data at 3 months) and intervention adherence (percentage of intervention group attending ≥60% sessions). Other feasibility measures included completion of outcome measures at baseline (pre-randomisation), 3 months post-randomisation (including patient-reported outcomes, exercise capacity and collection of health and social care resource use) and intervention fidelity. RESULTS:Target recruitment (40 PERFORM group, 20 control group) was met within the timeframe. Participants were 57% women with a mean (SD) age of 62 (13) years, body mass index of 30.8 (8.0) kg/m2 and a median of 4 LTCs (most common: diabetes (41.7%), hypertension (38.3%), asthma (36.7%) and a painful condition (35.0%)). We achieved EuroQol outcome retention of 76.7% (95% CI: 65.9% to 87.1%; 46/60 participants) and intervention adherence of 72.5% (95% CI: 56.3% to 84.4%; 29/40 participants). Data completion for attendees was over 90% for 11/18 outcome measures. CONCLUSIONS:Our findings support the feasibility and rationale for delivering the PERFORM comprehensive self-management and exercise-based rehabilitation intervention for people living with MLTCs and progression to a full multicentre RCT to formally assess clinical effectiveness and cost-effectiveness. TRIAL REGISTRATION NUMBER:ISRCTN68786622.
Objective The number of people living with multiple long-term conditions (MLTCs or ‘multimorbidity’) is growing. Evidence indicates that exercise-based rehabilitation can improve health-related quality of life and reduce hospital admissions for a number of single long-term conditions. However, it is increasingly recognised that such condition-focused rehabilitation programmes do not meet the needs of people living with MLTCs. The aims for this study were to (1) evaluate the acceptability and feasibility of the newly developed Personalised Exercise Rehabilitation FOR people with Multiple long-term conditions (PERFORM) intervention; (2) assess the feasibility of study methods to inform progression to a definitive randomised controlled trial (RCT) and (3) refine our intervention programme theory.Design Semi-structured qualitative interviews were conducted with patients receiving and healthcare practitioners delivering the PERFORM intervention, to seek their experiences of the intervention and taking part in the study. Interviews were analysed thematically, informed by Normalisation Process Theory and the programme theory.Setting Three UK sites (two acute hospital settings, one community-based healthcare setting).Participants 18 of the 60 PERFORM participants and 6 healthcare professionals were interviewed.Intervention The intervention consisted of 8 weeks of supervised group-based exercise rehabilitation and structured self-care symptom-based support.Results All participants and staff interviewed found PERFORM useful for physical and mental well-being and noted positive impacts of participation, although some specific modifications to the intervention delivery and training and study methods were identified. Scheduling, staffing and space limitations were barriers that must be considered for future evaluation and implementation. Key intervention mechanisms identified were social support, patient education, building routines and habits, as well as support from healthcare professionals.Conclusions We found the PERFORM intervention to be acceptable and feasible, with the potential to improve the health and well-being of people with MLTCs. The findings of the process evaluation inform the future delivery of the PERFORM intervention and the design of our planned full RCT. A definitive trial is needed to assess the clinical and cost-effectiveness.Trial registration number ISRCTN68786622.
Depression and anxiety are commonly experienced by people with chronic kidney disease (CKD). This study aimed to evaluate person- and service-level factors associated with depression and anxiety symptoms. We sought to also understand utilisation of mental health treatments and preferences for future psychological support. An online survey recruited participants from six UK kidney services with varying levels of psychosocial provision. The survey was also advertised on social media. Participants completed screening questionnaires for depression and anxiety, alongside questions about mental health history, self-efficacy, treatment and support. The study included adults (18 years or older) living with CKD (stages 3b and above) or those receiving any form of Kidney Replacement Therapy (KRT), including individuals with a functioning kidney transplant. Eligible participants had to complete study measures and be proficient in reading and writing in either English or Welsh, as the survey was administered in these languages. This survey was developed with our Patient and Public Involvement group and was administered from January 2023 until 31st January, 2024 using Qualtrics and RedCap. Four hundred fifty-eight people completed the survey. Moderate-severe symptoms of depression and anxiety were 37.7
Background:Fluid removal is a key component of dialysis treatment but, if excessive, can result in a faster decline in residual kidney function. Prescribing the optimal removal of fluid on dialysis to avoid this is therefore important. Bioimpedance spectroscopy, a bedside device that estimates tissue hydration, might improve this prescription, so reducing the rate of decline in kidney function and improving patient outcomes. We wished to establish the efficacy and cost-effectiveness of bioimpedance in pursuing this treatment strategy. Methods:We undertook a multicentre, open-label, parallel, individually randomised controlled trial in incident haemodialysis patients, with clinicians and patients blinded to bioimpedance readings in the control group. Eligible patients had a urine output of > 500 ml/day or a glomerular filtration rate > 3 ml/minute/1.73 m2. Randomisation was 1 : 1 using a concealed automated computer-generated allocation system stratified by centre. Clinical assessments were made monthly for 3 months and then every 3 months for up to 24 months using a standardised proforma in both groups, supplemented in the intervention group by the bioimpedance estimate of the normally hydrated weight. The primary outcome was time to anuria; secondary outcomes were rate in decline of residual kidney function, blood pressure, dialysis-related symptoms (Integrated Palliative Care Outcome Scale-Renal), quality of life (EuroQol) and incremental cost per additional quality-adjusted life-year gained. Results:Four hundred and thirty-nine patients were recruited and analysed from 34 United Kingdom centres. There were no between-group differences in cause-specific hazard rates of anuria, 0.751 (95% confidence interval 0.459 to 1.229) or subdistribution hazard rates 0.742 (95% confidence interval 0.453 to 1.215). Kidney function decline was slower than anticipated, pooled linear rates in year 1: -0.178 (95% confidence interval -0.196 to -0.159) ml/minute/1.73 m2/month; year 2: -0.061 (95% confidence interval -0.086 to -0.036) ml/minute/1.73 m2/month. Longitudinal blood pressure, symptoms and patient-reported outcomes did not differ by group. The intervention was associated with £382 (95% confidence interval -£3319 to £2556) lower average cost per patient (price year 2020) and 0.043 (95% confidence interval -0.019 to -0.105) more quality-adjusted life-years and no harm compared to control. A post hoc 5-year analysis found better survival with more residual kidney function at enrolment and at any time over the next 2 years. Conclusion:The use of a standardised clinical protocol for fluid assessment to avoid excessive fluid removal is associated with excellent preservation of residual kidney function and better medium-term survival in this cohort. Bioimpedance measurements are not necessary to achieve this. Probability of the intervention being cost-effective was 76% and 83% at the willingness-to-pay thresholds of £20,000 and £30,000 per quality-adjusted life-year gained, respectively. Limitations:The trial did not recruit to target (85%), and the number of primary outcomes was fewer than predicted. The trial was interrupted by coronavirus disease discovered in 2019, during which 193 (6.7%) fluid assessments and 276 (8.1%) kidney function measures but no primary outcomes were missed. Future work:Associations between age, ethnicity and the decline in residual kidney function require further investigation. BioImpedance Spectroscopy to maintain Renal Output identified centre-level variation in practices related to fluid management in haemodialysis that require evaluation. Funding:This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme as award number 14/216/01.
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.
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 01 st Jan 2010 and 31st Dec 2019 for UK Biobank and UKHLS, and between 01 st 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 signi fi cantly 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 ExerciseRehabilitation FOR people with Multiple long-term conditions (multimorbidity) - NIHR202020). Copyright (c) 2024 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
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).
Background:The BioImpedance Spectroscopy to maintain Renal Output randomised controlled trial investigated the effect of bioimpedance spectroscopy added to a standardised fluid management protocol on the risk of anuria and preservation of residual kidney function (primary trial outcomes) in incident haemodialysis patients. Despite the economic burden of kidney disease, the cost-effectiveness of using bioimpedance measurements to guide fluid management in haemodialysis is not known. Objectives:To assess the cost-effectiveness of bioimpedance-guided fluid management against current fluid management without bioimpedance. Design:Within-trial economic evaluation (cost-utility analysis) carried out alongside the open-label, multicentre BioImpedance Spectroscopy to maintain Renal Output randomised controlled trial. Setting:Thirty-four United Kingdom outpatient haemodialysis centres, both main and satellite units, and their associated inpatient hospitals. Participants:Four hundred and thirty-nine adult haemodialysis patients with > 500 ml urine/day or residual glomerular filtration rate > 3 ml/minute/1.73 m2. Intervention:The study intervention was the incorporation of bioimpedance technology-derived information about body composition into the clinical assessment of fluid status in patients with residual kidney function undergoing haemodialysis. Bioimpedance measurements were used in conjunction with usual clinical judgement to set a target weight that would avoid excessive fluid depletion at the end of a dialysis session. Main outcome measures:The primary outcome measure of the BioImpedance Spectroscopy to maintain Renal Output economic evaluation was incremental cost per additional quality-adjusted life-year gained over 24 months following randomisation. In the main (base-case) analysis, this was calculated from the perspective of the National Health Service and Personal Social Services. Sensitivity analyses explored the impact of different scenarios, sources of resource use data and value sets. Results:The bioimpedance-guided fluid management group was associated with £382 lower average cost per patient (95% CI -£3319 to £2556) and 0.043 more quality-adjusted life-years (95% CI -0.019 to 0.105) compared with the current fluid management group, with neither values being statistically significant. The probability of bioimpedance-guided fluid management being cost-effective was 76% and 83% at commonly cited willingness-to-pay threshold of £20,000 and £30,000 per quality-adjusted life-year gained, respectively. The results remained robust to a series of sensitivity analyses. Limitations:The missing data level was high for some resource use categories collected through case report forms, due to COVID-19 disruptions and a significant dropout rate in the informing BioImpedance Spectroscopy to maintain Renal Output trial. Conclusions:Compared with current fluid management, bioimpedance-guided fluid management produced a marginal reduction in costs and a small improvement in quality-adjusted life-years. Results from both the base-case and sensitivity analyses suggested that use of bioimpedance is likely to be cost-effective. Future work:Future work exploring the association between primary outcomes and longer-term survival would be useful. Should an important link be established, and relevant evidence becomes available, it would be informative to determine whether and how this might affect longer-term costs and benefits associated with bioimpedance-guided fluid management. Funding details:This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme as award number HTA 14/216/01 (NIHR136142).
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 indepth 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 fi dence having conversations about future treatment and care. Kidney teams have expressed interest implementing the guide in practice and within their broader communications training packages.
Abstract Introduction Fluid assessment and management is a key aspect of good dialysis care and is affected by patient-level characteristics and potentially centre-level practices. In this secondary analysis of the BISTRO trial we wished to establish whether centre-level practices with the potential to affect fluid status were stable over the course of the trial and explore if they had any residual associations with participant’s fluid status. Methods Two surveys (S) of fluid management practices were conducted in 32 participating centres during the trial, (S1: 2017–18 and S2: 2021–22). Domains interrogated included: dialysate sodium concentration, (D-[Na+]), fluid and salt intake, residual kidney function, use of diuretics, incremental start, approaches to fluid assessment, management and dialysate temperature, (D-oC). Associations of these practices with the closeness of the participant’s post-dialysis target weight to their normally hydrated weight, pre- and post-dialysis systolic (SBP) and diastolic blood pressure, (DBP), were analysed using intra-class correlations and multilevel modelling with adjustment for visit, age, sex and comorbidity burden. Results Variations in centre practices were reported but did not change during the trial, apart from some relaxation in salt and fluid restriction in S2. For our measures of fluid status, measured 2501 times in 439 non-anuric incident haemodialysis patients, centre-level intraclass correlations were extremely low, whereas patient-level correlations ranged between 0.12 and 0.47, strongest for pre- and post-dialysis-SBP, less so for post-dialysis-DBP. Multi-level analysis found no associations between D-[Na+], or assessment methods of fluid status. In S2, one centre, routinely using a D-Co of 35°C had more divergence between the target and normally hydrated weight, but this was not observed in S1, and no other associations were found. Conclusions Centre-level fluid management practices were stable over the course of the BISTRO trial, and in contrast to patient-level factors, no centre-level associations were detected with fluid status or blood pressure. This may be because the trial imposed a standardised approach to fluid assessment in all trial participants who at least initially had residual kidney function, potentially over-riding the effects of other centre practices. Survey responses revealed substantial scope for developing and evaluating standardised protocols to optimise fluid management.
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.
The Association of Nephrology Nurses Advanced Kidney Care (AKC) Nurses Community of Practice provides a summary of a recent audit of advanced kidney care nursing services, roles and activity.
Key Points Residual kidney function during the first 2 years of hemodialysis treatment is associated with a long-term (>4 years) survival advantage.Incorporating bioimpedance measurements to inform the setting of the postdialysis target weight does not affect patient survival. Background Preservation of residual kidney function (RKF) in dialysis patients has been associated with improved survival. RKF in the BISTRO trial was relatively well preserved, and in this study, we describe its association with survival during the trial and extended follow-up. Methods RKF, measured as the average urea and creatinine clearance (GFR) or 24-hour urine volume, was assessed at baseline; 1, 2, and 3 months; and every three months for up to 2 years in incident hemodialysis patients. Time to event survival data or competing events (transplantation, modality change) was obtained for 50 months after enrollment via data linkage with the UK Renal Registry. Cox proportional hazards regression survival models, including those incorporating change in GFR from baseline as a time-varying variable and joint regression models for longitudinal and survival data (longitudinal models for GFR or urine volume), were used to explore the relationship of RKF preservation with survival. Analyses were adjusted for age, sex, comorbidity, and ethnicity. Results A total of 2919 measures of RKF were made in 387 patients from 32 UK dialysis units. Higher age and comorbidity score were associated with increased mortality in all models. Baseline GFR reduced the risk of death (hazard ratio [HR], 0.918; 95% confidence interval [CI], 0.844 to 0.999) per ml/min per 1.73 m2. A greater fall in GFR and urine volume from baseline was associated with a nonsignificant increased risk of death, as visualized on spline plots. In the joint survival models, higher GFR (adjusted HR, 0.88; 95% CI, 0.80 to 0.97) or urine volume (adjusted HR, 0.75, 95% CI, 0.57 to 0.95/L) at any time point was associated with better survival. Conclusions Lower RKF during the first 2 years of hemodialysis is associated with an increased death risk for up to 50 months after dialysis initiation. This adds to a growing body of evidence that interventions to preserve RKF should be developed and tested in clinical trials.
BackgroundAlmost 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.MethodsIn 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.FindingsForty-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%).InterpretationExercise-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.FundingThis 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).