A national survey of current rehabilitation service provisions for people living with chronic kidney disease in the UK: Implications for policy and practice

Data availability: Data available from corresponding author upon request; [email protected] supplementary material is available online at: https://bmcnephrol.biomedcentral.com/articles/10.1186/s12882-024-03742-4#Sec30 .Background: National guidance recognises the key role of rehabilitation in improving outcomes for people living with chronic kidney disease. Implementation of this guidance is reliant upon an adequate and skilled rehabilitation workforce. Data relating to this is currently lacking within the UK. This survey aimed to identify variations and good practices in kidney physiotherapy (PT), occupational therapy (OT) and clinical exercise physiologist (CEP) provision; and to understand barriers to implementation. Methods: An online survey was sent to all 87 UK kidney units between June 2022 and January 2023. Data was collected on the provision of therapy services, barriers to service provision and responses to the COVID-19 pandemic. The quantitative survey was analysed using descriptive statistics. Free-text responses were explored using reflexive thematic analysis. Results: Forty-five units (52%) responded. Seventeen (38%) units reported having a PT and 15 (33%) an OT with a specialist kidney role; one unit (7%) had access to a CEP. Thirty units (67%) offered inpatient therapy services, ten (22%) outpatient therapy clinics, six (13%) intradialytic exercise, six (13%) symptom management and three (7%) outpatient rehabilitation. Qualitative data revealed lack of money/funding and time (both n = 35, 85% and n = 34, 83% respectively) were the main barriers to delivering kidney-specific therapy. Responders saw an increase in the complexity of their caseload, a reduction in staffing levels and consequently, service provision during the COVID-19 pandemic. Exemplars of innovative service delivery, including hybrid digital and remote services, were viewed as positive responses to the COVID-19 pandemic. Conclusion: Despite clear evidence of the benefits of rehabilitation, across the UK, there remains limited and variable access to kidney-specific therapy services. Equitable access to kidney-specific rehabilitation services is urgently required to support people to ‘live well’ with kidney disease.HMLY is funded by the NIHR [NIHR302926]

Living with frailty and haemodialysis: a qualitative study

Background: Frailty is highly prevalent in people receiving haemodialysis (HD) and is associated with poor outcomes. Understanding the lived experiences of this group is essential to inform holistic care delivery. / Methods: Semi-structured interviews with N = 25 prevalent adults receiving HD from 3 HD units in the UK. Eligibility criteria included a Clinical Frailty Scale (CFS) score of 4–7 and a history of at least one fall in the last 6 months. Sampling began guided by maximum variation sampling to ensure diversity in frailty status; subsequently theoretical sampling enabled exploration of preliminary themes. Analysis was informed by constructivist grounded theory; later we drew upon the socioecological model. / Results: Participants had a mean age of 69 ± 10 years, 13 were female, and 13 were White British. 14 participants were vulnerable or mildly frail (CFS 4–5), and 11 moderately or severely frail (CFS 6–7). Participants characterised frailty as weight loss, weakness, exhaustion, pain and sleep disturbance arising from multiple long-term conditions. Participants’ accounts revealed: the consequences of frailty (variable function and psychological ill-health at the individual level; increasing reliance upon family at the interpersonal level; burdensome health and social care interactions at the organisational level; reduced participation at the community level; challenges with financial support at the societal level); coping strategies (avoidance, vigilance, and resignation); and unmet needs (overprotection from family and healthcare professionals, transactional health and social care exchanges). / Conclusions: The implementation of a holistic needs assessment, person-centred health and social care systems, greater family support and enhancing opportunities for community participation may all improve outcomes and experience. An approach which encompasses all these strategies, together with wider public health interventions, may have a greater sustained impact. Trial registration: ISRCTN12840463

Home-based exercise for people living with frailty and chronic kidney disease: A mixedmethods pilot randomised controlled trial

Background Frailty is associated with adverse health outcomes in people with chronic kidney disease (CKD). Evidence supporting targeted interventions is needed. This pilot randomised controlled trial (RCT) aimed to inform the design of a definitive RCT evaluating the effectiveness of a home-based exercise intervention for pre-frail and frail older adults with CKD. Methods Participants were recruited from nephrology outpatient clinics to this two-arm parallel group mixed-methods pilot RCT. Inclusion criteria were: ≥65 years old; CKD G3b-5; and Clinical Frailty Scale score ≥4. Participants categorised as pre-frail or frail using the Frailty Phenotype were randomised to a 12-week progressive multi-component home-based exercise programme or usual care. Primary outcome measures included eligibility, recruitment, adherence, outcome measure completion and participant attrition rate. Semi-structured interviews were conducted with participants to explore trial and intervention acceptability. Results Six hundred and sixty-five patients had an eligibility assessment with 217 (33%; 95% CI 29, 36) eligible. Thirty-five (16%; 95% CI 12, 22) participants were recruited. Six were categorised as robust and withdrawn prior to randomisation. Fifteen participants were randomised to exercise and 14 to usual care. Eleven (73%; 95% CI 45, 91) participants completed ≥2 exercise sessions/week. Retained participants completed all outcome measures (n = 21; 100%; 95% CI 81, 100). Eight (28%; 95% CI 13, 47) participants were withdrawn. Fifteen participated in interviews. Decision to participate/withdraw was influenced by perceived risk of exercise worsening symptoms. Participant perceived benefits included improved fitness, balance, strength, well-being, energy levels and confidence. Conclusions This pilot RCT demonstrates that progression to definitive RCT is possible provided recruitment and retention challenges are addressed. It has also provided preliminary evidence that home-based exercise may be beneficial for people living with frailty and CKD

The EX-FRAIL CKD trial: A study protocol for a pilot randomised controlled trial of a home-based EXercise programme for pre-frail and FRAIL, older adults with Chronic Kidney Disease

Introduction Frailty is highly prevalent in adults with chronic kidney disease (CKD) and is associated with adverse health outcomes including falls, poorer health-related quality of life (HRQOL), hospitalisation and mortality. Low physical activity and muscle wasting are important contributors to physical frailty in adults with CKD. Exercise training may improve physical function and frailty status leading to associated improvements in health outcomes, including HRQOL. The EX-FRAIL CKD trial aims to inform the design of a definitive randomised controlled trial (RCT) that investigates the effectiveness of a progressive, multicomponent home-based exercise programme in prefrail and frail older adults with CKD. Methods and analysis The EX-FRAIL CKD trial is a two-arm parallel group pilot RCT. Participants categorised as prefrail or frail, following Frailty Phenotype (FP) assessment, will be randomised to receive exercise or usual care. Participants randomised to the intervention arm will receive a tailored 12-week exercise programme, which includes weekly telephone calls to advise on exercise progression. Primary feasibility outcome measures include rate of recruitment, intervention adherence, outcome measure completion and participant attrition. Semistructured interviews with a purposively selected group of participants will inform the feasibility of the randomisation procedures, outcome measures and intervention. Secondary outcome measures include physical function (walking speed and Short Physical Performance Battery), frailty status (FP), fall concern (Falls Efficacy Scale-International tool), activities of daily living (Barthel Index), symptom burden (Palliative care Outcome Scale-Symptoms RENAL) and HRQOL (Short Form-12v2). Ethics and dissemination Ethical approval was granted by a National Health Service (NHS) Regional Ethics Committee and the NHS Health Research Authority. The study team aims to publish findings in a peer-reviewed journal and presents the results at relevant national and international conferences. A summary of findings will be provided to participants, a local kidney patient charity and the funding body. Trial registration number ISRCTN87708989

Physical activity and sedentary behaviour interventions for people living with both frailty and multiple long-term conditions and their informal carers: a scoping review and stakeholder consultation

\ua9 The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society. INTRODUCTION: This scoping review mapped evidence on physical activity (including structured exercise) and sedentary behaviour interventions (interventions to reduce sedentary behaviour) in people living with both frailty and multiple long-term conditions (MLTCs) and their informal carers. METHODS: Ten databases and grey literature were searched from 2000 to October 2023. Two reviewers screened studies and one extracted data. Results were shared with three stakeholder groups (n = 21) in a consultation phase. RESULTS: After screening, 155 papers from 144 studies (1 ongoing) were retained. The majority were randomised controlled trials (86, 55%). Participants\u27 mean age was 73 \ub1 12 years, and 73% were of White ethnicity. MLTC and frailty measurement varied widely. Most participants were pre-to-moderately frail. Physical health conditions predominated over mental health conditions.Interventions focused on structured exercise (83 studies, 60%) or combined interventions (55 studies, 39%). Two (1%) and one (0.7%) focused solely on habitual physical activity or sedentary behaviour. Adherence was 81% (interquartile range 62%-89%) with goal setting, monitoring and support important to adherence. Carers were only involved in 15 (11%) studies. Most interventions reported positive outcomes, primarily focusing on body functions and structures. CONCLUSIONS: A modest volume of evidence exists on multicomponent structured exercise interventions, with less focus on habitual physical activity and sedentary behaviour. Interventions report largely positive effects, but an updated systematic review is required. The field could be advanced by more rigorous characterisation of MLTCs, socioeconomic status and ethnicity, increased informal carer involvement and further evaluation of habitual physical activity and sedentary behaviour interventions

Achieving consensus on psychosocial and physical rehabilitation management for people living with kidney disease

Data Availability Statement The data underlying this article are available in the article and in its online supplementary material.Copyright © The Author(s) 2023. 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 United Kingdom. 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 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. Method 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 well-being 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 recognise 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

Exploring how the Kidney BEAM physical activity digital health intervention improved mental health-related quality of life for people living with kidney disease: a mixed methods approach

Data Availability Statement: Quantitative data from the main trial,14 including deidentified participant data, will be made available on reasonable request, and following trial steering committee approval, but contacting the senior author ([email protected]). The study protocol, statistical analysis plan, and other study forms for the main trial were previously published.20 The ethical review board for the Kidney BEAM trial was granted from the Bromley National Health Service (NHS) Research Ethics Committee (REC) and the Health Research Authority (HRA) (reference 21/L0/0243).14 The qualitative data presented in this paper, the transcript data are not publicly available due to privacy or ethical restrictions. Consent was not given for the full publication of transcripts. However, further detail on the qualitative data that support findings of this study are available on request from the corresponding author ([email protected]). Mixed methods data is presented throughout this manuscript and associated supplementary materials.Supplementary Material is available online at: https://www.sciencedirect.com/science/article/pii/S2468024924019594#appsec2 /Introduction: The Kidney BEAM randomized controlled trial reported clinically meaningful and statistically significant improvements in mental health-related quality of life (HRQoL), physical function (sit-to-stand-60, but not the physical component of HRQoL) and patient activation after a 12-week physical activity digital health intervention (DHI). This study explores factors that contributed to the effectiveness of Kidney BEAM through mixed methods analyses. Methods: Quantitative data analysis was obtained from the recently published primary manuscript. Participants from the Kidney BEAM trial intervention group (n = 30) completed individualized semistructured interviews after the 12-week DHI. Interviews were analyzed using the framework method with inductive and deductive coding. Quantitative and qualitative data collection and analyses occurred concurrently, and independently, before combining using a mixed methods analysis with joint displays to triangulate datasets and further explore the primary findings. Results: The integrated mixed methods analyses facilitated explanation of the primary findings. The Kidney BEAM intervention was shown to have mental and physical wellbeing benefits and enhanced self-management in this cohort of people living with chronic kidney disease (CKD). Elements that contributed to the effectiveness of the intervention were reported, including the different functional levels and gradual progression of the program, shared lived experiences with other participants, self-monitoring, the sense of achievement, taking back control of their health, moving beyond medications, and feeling safe and confident to exercise. Conclusion: Elements of the Kidney BEAM intervention that contributed to the main quantitative trial findings were identified. This will allow researchers and practitioners to maximize the effectiveness of DHIs to enhance healthy behaviors in people living with CKD.This study was funded by a grant from Kidney Research UK. Funding for Kidney BEAM is currently supported by 4 major UK charities: Kidney Research UK, Kidney Care UK, National Kidney Federation, and the UK Kidney Association. HMLY is funded by the NIHR [NIHR302926]. The views expressed are those of the author(s)

Evidence for exercise-based interventions across 45 different long-term conditions: an overview of systematic reviews

Data sharing statement: Data collected for the study will be made available on request to the corresponding author.Supplementary data are available online at: https://www.sciencedirect.com/science/article/pii/S2589537024001780#appsec1 .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.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). GOD received additional support from the Medical Research Council (grant ref: MC_UU_00022/1) and the Scottish Government Chief Scientist Office (grant ref: SPHSU16)

Evaluating the effect of a digital health intervention to enhance physical activity in people with chronic kidney disease (Kidney BEAM): a multicentre, randomised controlled trial in the UK

Data sharing: Data collected during the study, including de-identified participant data, will be made available on reasonable request, and following trial steering committee approval, by contacting the corresponding author. The study protocol, statistical analysis plan, and other study forms were published previously [24. Walklin, C.G. et al. (2023) 'The effect of a novel, digital physical activity and emotional well-being intervention on health-related quality of life in people with chronic kidney disease: trial design and baseline data from a multicentre prospective, wait-list randomised controlled trial (Kidney BEAM)', BMC Nephrology, 24, p. 122. doi: .10.1186/s12882-023-03173-7]Copyright . Background: Remote digital health interventions to enhance physical activity provide a potential solution to improve the sedentary behaviour, physical inactivity, and poor health-related quality of life that are typical of chronic conditions, particularly for people with chronic kidney disease. However, there is a need for high-quality evidence to support implementation in clinical practice. The Kidney BEAM trial evaluated the clinical effect of a 12-week physical activity digital health intervention on health-related quality of life. Methods: In a single-blind, randomised controlled trial conducted at 11 centres in the UK, adult participants (aged ≥18 years) with chronic kidney disease were recruited and randomly assigned (1:1) to the Kidney BEAM physical activity digital health intervention or a waiting list control group. Randomisation was performed with a web-based system, in randomly permuted blocks of six. Outcome assessors were masked to treatment allocation. The primary outcome was the difference in the Kidney Disease Quality of Life Short Form version 1.3 Mental Component Summary (KDQoL-SF1.3 MCS) between baseline and 12 weeks. The trial was powered to detect a clinically meaningful difference of 3 arbitrary units (AU) in KDQoL-SF1.3 MCS. Outcomes were analysed by an intention-to-treat approach using an analysis of covariance model, with baseline measures and age as covariates. The trial was registered with ClinicalTrials.gov, NCT04872933. Findings: Between May 6, 2021, and Oct 30, 2022, 1102 individuals were assessed for eligibility, of whom 340 participants were enrolled and randomly assigned to the Kidney BEAM intervention group (n=173) or the waiting list control group (n=167). 268 participants completed the trial (112 in the Kidney BEAM group and 156 in the waiting list control group). All 340 randomly assigned participants were included in the intention-to treat population. At 12 weeks, there was a significant improvement in KDQoL-SF.13 MCS score in the Kidney BEAM group (from mean 44·6 AU [SD 10·8] at baseline to 47·0 AU [10·6] at 12 weeks) compared with the waiting list control group (from 46·1 AU [10·5] to 45·0 AU [10·1]; between-group difference of 3·1 AU [95% CI 1·8–4·4]; p<0·0001). Interpretation: The Kidney BEAM physical activity platform is an efficacious digital health intervention to improve mental health-related quality of life in patients with chronic kidney disease. These findings could facilitate the incorporation of remote digital health interventions into clinical practice and offer a potential intervention worthy of investigation in other chronic conditions.Kidney Research UK