Community based complex interventions to sustain independence in older people: systematic review and network meta-analysis.

OBJECTIVE: To synthesise evidence of the effectiveness of community based complex interventions, grouped according to their intervention components, to sustain independence for older people. DESIGN: Systematic review and network meta-analysis. DATA SOURCES: Medline, Embase, CINAHL, PsycINFO, CENTRAL, clinicaltrials.gov, and International Clinical Trials Registry Platform from inception to 9 August 2021 and reference lists of included studies. ELIGIBILITY CRITERIA: Randomised controlled trials or cluster randomised controlled trials with ≥24 weeks' follow-up studying community based complex interventions for sustaining independence in older people (mean age ≥65 years) living at home, with usual care, placebo, or another complex intervention as comparators. MAIN OUTCOMES: Living at home, activities of daily living (personal/instrumental), care home placement, and service/economic outcomes at 12 months. DATA SYNTHESIS: Interventions were grouped according to a specifically developed typology. Random effects network meta-analysis estimated comparative effects; Cochrane's revised tool (RoB 2) structured risk of bias assessment. Grading of recommendations assessment, development and evaluation (GRADE) network meta-analysis structured certainty assessment. RESULTS: The review included 129 studies (74 946 participants). Nineteen intervention components, including "multifactorial action from individualised care planning" (a process of multidomain assessment and management leading to tailored actions), were identified in 63 combinations. For living at home, compared with no intervention/placebo, evidence favoured multifactorial action from individualised care planning including medication review and regular follow-ups (routine review) (odds ratio 1.22, 95% confidence interval 0.93 to 1.59; moderate certainty); multifactorial action from individualised care planning including medication review without regular follow-ups (2.55, 0.61 to 10.60; low certainty); combined cognitive training, medication review, nutritional support, and exercise (1.93, 0.79 to 4.77; low certainty); and combined activities of daily living training, nutritional support, and exercise (1.79, 0.67 to 4.76; low certainty). Risk screening or the addition of education and self-management strategies to multifactorial action from individualised care planning and routine review with medication review may reduce odds of living at home. For instrumental activities of daily living, evidence favoured multifactorial action from individualised care planning and routine review with medication review (standardised mean difference 0.11, 95% confidence interval 0.00 to 0.21; moderate certainty). Two interventions may reduce instrumental activities of daily living: combined activities of daily living training, aids, and exercise; and combined activities of daily living training, aids, education, exercise, and multifactorial action from individualised care planning and routine review with medication review and self-management strategies. For personal activities of daily living, evidence favoured combined exercise, multifactorial action from individualised care planning, and routine review with medication review and self-management strategies (0.16, -0.51 to 0.82; low certainty). For homecare recipients, evidence favoured addition of multifactorial action from individualised care planning and routine review with medication review (0.60, 0.32 to 0.88; low certainty). High risk of bias and imprecise estimates meant that most evidence was low or very low certainty. Few studies contributed to each comparison, impeding evaluation of inconsistency and frailty. CONCLUSIONS: The intervention most likely to sustain independence is individualised care planning including medicines optimisation and regular follow-up reviews resulting in multifactorial action. Homecare recipients may particularly benefit from this intervention. Unexpectedly, some combinations may reduce independence. Further research is needed to investigate which combinations of interventions work best for different participants and contexts. REGISTRATION: PROSPERO CRD42019162195.

Mapping review of pain management programmes and psychological therapies for community-dwelling older people living with pain.

PURPOSE: Persistent pain is common in older people and people living with frailty. Pain or the impact of pain on everyday life is potentially modifiable. We sought to map research evidence and information from randomised controlled trials (RCTs) of pain management programmes and psychological therapies targeting community-dwelling older people, and explore appropriate strategies and interventions for managing or reducing the negative impact of pain for older people, particularly those with frailty. METHOD: A mapping review of pain management programmes and psychological therapies for community-dwelling older people living with chronic pain. We searched for systematic reviews of randomised controlled trials and for individual randomised controlled trials and extracted data from eligible studies. RESULTS: Searches resulted in 3419 systematic review records and 746 RCT records from which there were 33 eligible interventions identified in 31 eligible RCTs (48 reports). Broad aims of the interventions were to: improve physical, psychological, or social functioning; adjust the effects or sensation of pain psychologically; enhance self-care with self-management skills or knowledge. Common mechanisms of change proposed were self-efficacy enhanced by self-management tasks and skills, using positive psychological skills or refocusing attention to improve responses to pain, and practising physical exercises to improve physiological well-being and reduce restrictions from pain. Content of interventions included: skills training and activity management, education, and physical exercise. Interventions were delivered in person or remotely to individuals or in groups, typically in 1-2 sessions weekly over 5-12 weeks. CONCLUSION: All the evaluated interventions appeared to show potential to provide some benefits to older people. None of the included studies assessed frailty. However, some of the included interventions appear appropriate for community-dwelling older people living with both frailty and pain.

An intervention to support stroke survivors and their carers in the longer term: results of a cluster randomised controlled feasibility trial (LoTS2Care).

BACKGROUND: To address the limited provision of longer-term stroke care, we conducted a programme of research (LoTS2Care) to develop and test an intervention to form part of a replicable longer-term care strategy. New Start, a programme of facilitated self-management, was developed to be delivered at 6 months post-stroke by trained facilitators. Here, we report the findings from the final workstream of this programme, which aimed to evaluate the feasibility and acceptability of implementing a future definitive cluster randomised controlled trial of the developed intervention (New Start) to support stroke survivors and their carers in the longer term. METHODS: A feasibility cluster randomised controlled trial was conducted in English and Welsh NHS stroke services. Stroke services (clusters) were randomised on a 1:1 basis to implement New Start or continue with usual care only. Community-dwelling stroke survivors between 4 and 6 months post-stroke were invited to participate in the trial by post. Outcome measures were collected via post at 3, 6 and 9 months after recruitment. Recruitment and follow-up rates, delivery and uptake of the intervention, data collection feasibility (including postal outcome measures of health and disability, mental well-being at 3, 6, and 9 months post-recruitment) and safety were assessed. RESULTS: Ten stroke services were recruited. A total of 1127 stroke survivors were screened for participation, and 269 were registered (New Start, n = 145; usual care, n = 124). Retention was high with 239 (89%) stroke survivors being available for follow-up at 9 months, and high return rates of postal questionnaires were achieved (80.3% at 9 months). Intervention training was successfully delivered, and New Start was offered to 95.2% of trial participants in the intervention arm. Uptake was variable, however, ranging from 11.8 to 75.0%. There were no safety concerns. CONCLUSIONS: Stroke service recruitment and longer-term stroke survivor postal recruitment and outcome data collection are feasible; however, refinement of intervention targeting and delivery is required prior to undertaking a definitive trial. TRIAL REGISTRATION: ISRCTN38920246. Registered 22 June 2016 ( http://www.isrctn.com/ISRCTN38920246 ).

Information provision for stroke survivors and their carers.

BACKGROUND: A stroke is a sudden loss of brain function caused by lack of blood supply. Stroke can lead to death or physical and cognitive impairment and can have long lasting psychological and social implications. Research shows that stroke survivors and their families are dissatisfied with the information provided and have a poor understanding of stroke and associated issues. OBJECTIVES: The primary objective is to assess the effects of active or passive information provision for stroke survivors (people with a clinical diagnosis of stroke or transient ischaemic attack (TIA)) or their identified carers. The primary outcomes are knowledge about stroke and stroke services, and anxiety. SEARCH METHODS: We updated our searches of the Cochrane Stroke Group Specialised Register on 28 September 2020 and for the following databases to May/June 2019: the Cochrane Central Register of Controlled Trials (CENTRAL; 2019, Issue 5) and the Cochrane Database of Systematic Reviews (CDSR; 2019, Issue 5) in the Cochrane Library (searched 31 May 2019), MEDLINE Ovid (searched 2005 to May week 4, 2019), Embase Ovid (searched 2005 to 29 May 2019), CINAHL EBSCO (searched 2005 to 6 June 2019), and five others. We searched seven study registers and checked reference lists of reviews. SELECTION CRITERIA: Randomised trials involving stroke survivors, their identified carers or both, where an information intervention was compared with standard care, or where information and another therapy were compared with the other therapy alone, or where the comparison was between active and passive information provision without other differences in treatment. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed trial eligibility and risk of bias, and extracted data. We categorised interventions as either active information provision or passive information provision: active information provision included active participation with subsequent opportunities for clarification and reinforcement; passive information provision provided no systematic follow-up or reinforcement procedure. We stratified analyses by this categorisation. We used GRADE methods to assess the overall certainty of the evidence. MAIN RESULTS: We have added 12 new studies in this update. This review now includes 33 studies involving 5255 stroke-survivor and 3134 carer participants. Twenty-two trials evaluated active information provision interventions and 11 trials evaluated passive information provision interventions. Most trials were at high risk of bias due to lack of blinding of participants, personnel, and outcome assessors where outcomes were self-reported. Fewer than half of studies were at low risk of bias regarding random sequence generation, concealment of allocation, incomplete outcome data or selective reporting. The following estimates have low certainty, based on the quality of evidence, unless stated otherwise. Accounting for certainty and size of effect, analyses suggested that for stroke survivors, active information provision may improve stroke-related knowledge (standardised mean difference (SMD) 0.41, 95% confidence interval (CI) 0.17 to 0.65; 3 studies, 275 participants), may reduce cases of anxiety and depression slightly (anxiety risk ratio (RR) 0.85, 95% CI 0.68 to 1.06; 5 studies, 1132 participants; depression RR 0.83, 95% CI 0.68 to 1.01; 6 studies, 1315 participants), may reduce Hospital Anxiety and Depression Scale (HADS) anxiety score slightly, (mean difference (MD) -0.73, 95% CI -1.10 to -0.36; 6 studies, 1171 participants), probably reduces HADS depression score slightly (MD (rescaled from SMD) -0.8, 95% CI -1.27 to -0.34; 8 studies, 1405 participants; moderate-certainty evidence), and may improve each domain of the World Health Organization Quality of Life assessment short-form (WHOQOL-BREF) (physical, MD 11.5, 95% CI 7.81 to 15.27; psychological, MD 11.8, 95% CI 7.29 to 16.29; social, MD 5.8, 95% CI 0.84 to 10.84; environment, MD 7.0, 95% CI 3.00 to 10.94; 1 study, 60 participants). No studies evaluated positive mental well-being. For carers, active information provision may reduce HADS anxiety and depression scores slightly (MD for anxiety -0.40, 95% CI -1.51 to 0.70; 3 studies, 921 participants; MD for depression -0.30, 95% CI -1.53 to 0.92; 3 studies, 924 participants), may result in little to no difference in positive mental well-being assessed with Bradley's well-being questionnaire (MD -0.18, 95% CI -1.34 to 0.98; 1 study, 91 participants) and may result in little to no difference in quality of life assessed with a 0 to 100 visual analogue scale (MD 1.22, 95% CI -7.65 to 10.09; 1 study, 91 participants). The evidence is very uncertain (very low certainty) for the effects of active information provision on carers' stroke-related knowledge, and cases of anxiety and depression. For stroke survivors, passive information provision may slightly increase HADS anxiety and depression scores (MD for anxiety 0.67, 95% CI -0.37 to 1.71; MD for depression 0.39, 95% CI -0.61 to 1.38; 3 studies, 227 participants) and the evidence is very uncertain for the effects on stroke-related knowledge, quality of life, and cases of anxiety and depression. For carers, the evidence is very uncertain for the effects of passive information provision on stroke-related knowledge, and HADS anxiety and depression scores. No studies of passive information provision measured carer quality of life, or stroke-survivor or carer positive mental well-being. AUTHORS' CONCLUSIONS: Active information provision may improve stroke-survivor knowledge and quality of life, and may reduce anxiety and depression. However, the reductions in anxiety and depression scores were small and may not be important. In contrast, providing information passively may slightly worsen stroke-survivor anxiety and depression scores, although again the importance of this is unclear. Evidence relating to carers and to other outcomes of passive information provision is generally very uncertain. Although the best way to provide information is still unclear, the evidence is better for strategies that actively involve stroke survivors and carers and include planned follow-up for clarification and reinforcement.

Experiences and views of receiving and delivering information about recovery in acquired neurological conditions: a systematic review of qualitative literature.

OBJECTIVE: To review and synthesise qualitative literature relating to the views, perceptions and experiences of patients with acquired neurological conditions and their caregivers about the process of receiving information about recovery; as well as the views and experiences of healthcare professionals involved in delivering this information. DESIGN: Systematic review of qualitative studies. DATA SOURCES: MEDLINE, Embase, AMED, CINAHL, PsycINFO, Web of Science and the Cochrane library were searched from their inception to July 2019. DATA EXTRACTION AND SYNTHESIS: Two reviewers extracted data from the included studies and assessed quality using an established tool. Thematic synthesis was used to synthesise the findings of included studies. RESULTS: Searches yielded 9105 titles, with 145 retained for full-text screening. Twenty-eight studies (30 papers) from eight countries were included. Inductive analysis resulted in 11 descriptive themes, from which 5 analytical themes were generated: the right information at the right time; managing expectations; it's not what you say, it's how you say it; learning how to talk about recovery and manage emotions; the context of uncertainty. CONCLUSIONS: Our findings highlight the inherent challenges in talking about recovery in an emotional context, where breaking bad news is a key feature. Future interventions should focus on preparing staff to meet patients' and families' information needs, as well as ensuring they have the skills to discuss potential recovery and break bad news compassionately and share the uncertain trajectory characteristic of acquired neurological conditions. An agreed team-based approach to talking about recovery is recommended to ensure consistency and improve the experiences of patients and their families.

Community-based complex interventions to sustain independence in older people, stratified by frailty: a protocol for a systematic review and network meta-analysis.

INTRODUCTION: Maintaining independence is a primary goal of community health and care services for older people, but there is currently insufficient guidance about which services to implement. Therefore, we aim to synthesise evidence on the effectiveness of community-based complex interventions to sustain independence for older people, including the effect of frailty, and group interventions to identify the best configurations. METHODS AND ANALYSIS: Systematic review and network meta-analysis (NMA). We will include randomised controlled trials (RCTs) and cluster RCTs of community-based complex interventions to sustain independence for older people living at home (mean age ≥65 years), compared with usual care or another complex intervention. We will search MEDLINE (1946 to September 2020), Embase (1947 to September 2020), CINAHL (1981 to September 2020), PsycINFO (1806 to September 2020), CENTRAL and clinical trial registries from inception to September 2020, without date/language restrictions, and scan included papers' reference lists. Main outcomes were: living at home, activities of daily living (basic/instrumental), home-care services usage, hospitalisation, care home admission, costs and cost effectiveness. Additional outcomes were: health status, depression, loneliness, falls and mortality. Interventions will be coded, summarised and grouped. An NMA using a multivariate random-effects model for each outcome separately will determine the relative effects of different complex interventions. For each outcome, we will produce summary effect estimates for each pair of treatments in the network, with 95% CI, ranking plots and measures, and the borrowing of strength statistic. Inconsistency will be examined using a 'design-by-treatment interaction' model. We will assess risk of bias (Cochrane tool V.2) and certainty of evidence using the Grading of Recommendations Assessment, Development and Evaluation for NMA approach. ETHICS AND DISSEMINATION: This research will use aggregated, anonymised, published data. Findings will be reported according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidance. They will be disseminated to policy-makers, commissioners and providers, and via conferences and scientific journals. PROSPERO REGISTRATION NUMBER: CRD42019162195.

Supporting carers of stroke survivors to reduce carer burden: development of the Preparing is Caring intervention using Intervention Mapping.

BACKGROUND: Burden is well documented among carers of stroke survivors, yet current evidence is insufficient to determine if any strategies reduce this negative outcome. Existing interventions for carers of stroke survivors typically involve supporting carers according to their individual needs through face-to-face interactions and provision of information including workbooks or educational guides. To date, no interventions have been developed using a method which systematically incorporates evidence, behaviour change theories, and stakeholder involvement to change the behaviours of carers and relevant individuals who support carers. This study aimed to develop a programme plan for a theory and evidence-based intervention to reduce burden in carers of stroke survivors. METHODS: Informed by evidence from two systematic reviews and 33 qualitative interviews, the first four stages of Intervention Mapping were used to guide the intervention development process: 1) needs assessment; 2) identifying outcomes and objectives; 3) selecting theoretical methods and practical applications; and 4) creating a programme plan. Structured and facilitated involvement from stakeholders, including carers, researchers, and professionals from health and community services was integral to the intervention development process. Stakeholders helped to prioritise the focus of the intervention, develop the goals, outcomes and objectives for the programme, and generate and refine intervention ideas. RESULTS: Stakeholders prioritised the need for carers to feel prepared before and during the transition from hospital to home as key to reducing burden. The proposed intervention 'Preparing is Caring' targets this need and involves providing and signposting carers to relevant information and support for practical and emotional needs. This is to be delivered before, during, and immediately after the stroke survivor's transition from hospital to home by a person taking on a single point of contact role. It is comprised of multiple theory-based components including: training packages for information and support providers working with carers and wider staff teams, plus elements to support carers to feel prepared. CONCLUSIONS: We have developed a comprehensive programme plan for a multiple-component, theory and evidence informed behaviour change intervention aimed at preparing carers before and during the transition from hospital to home. Future work is required to refine, implement and evaluate the Preparing is Caring intervention.

Quality of life is substantially worse for community-dwelling older people living with frailty: systematic review and meta-analysis.

PURPOSE: Frailty is an important predictor of adverse health events in older people, and improving quality of life (QOL) is increasingly recognised as a focus for services in this population. This systematic review synthesised evidence of the relationship between frailty and QOL in community-dwelling older people, with an emphasis on how this relationship varied across QOL domains. METHODS: We conducted a systematic review with meta-analysis. We searched five databases for reports of QOL in older people with frailty and included studies based on pre-defined criteria. We conducted meta-analyses comparing "frail" and "not frail" groups for each QOL scale where data were available. We compared pooled results to distribution-based and known-group differences to enhance interpretation. We summarised reported cross-sectional and longitudinal analyses. RESULTS: Twenty-two studies (24,419 participants) were included. There were medium or larger standardised mean differences for 24 of 31 QOL scales between frail and not frail groups, with worse QOL for frail groups. These scales encompassed constructs of health-related quality of life as well as psychological and subjective well-being. There were similar findings from mean difference meta-analyses and within-study analyses. CONCLUSIONS: The association between frailty and lower QOL across a range of constructs is clear and often substantial. Future research should establish whether causal mechanisms link the constructs, which aspects of QOL are most important to older people with frailty, and investigate their tractability. Services focused on measuring and improving QOL for older people with frailty should be introduced.

An intervention to support stroke survivors and their carers in the longer term (LoTS2Care): study protocol for the process evaluation of a cluster randomised controlled feasibility trial.

BACKGROUND: Whilst pathways relating to the early stages of stroke care have become well established, strategies for longer-term care are less developed and longer-term outcomes remain poor for many stroke survivors. New Start, a complex intervention that includes needs identification, exploration of social networks and components of problem-solving and self-management, was designed to improve stroke survivors' quality of life by addressing unmet needs and increasing participation. It is delivered approximately 6 months post-stroke by trained staff (facilitators). We are currently undertaking a cluster randomised feasibility trial of the New Start intervention with an embedded process evaluation, which is an important component of the design and testing of complex interventions as it provides an understanding of how interventions are delivered and function in different settings. METHODS/DESIGN: This mixed methods process evaluation will explore the degree to which New Start is implemented as intended, the impact of context on intervention delivery and the acceptability of the intervention for stroke survivors, their families and practitioners. It will include non-participant observation of facilitator training and intervention delivery. Interviews with stroke survivors, facilitators and other relevant staff (including administrators and managerial staff) will be undertaken. Qualitative data from interview transcripts, facilitator reflections and observational field notes will be analysed thematically alongside numerical data documenting intervention delivery collected as part of the trial. DISCUSSION: This process evaluation will identify factors that aid and impede implementation of the New Start intervention and improve understanding of this novel approach to longer-term stroke care. TRIAL REGISTRATION: ISRCTN Registry, ISRCTN38920246 . Registered on 22 June 2016.

Family and professionals underestimate quality of life across diverse cultures and health conditions: systematic review.

OBJECTIVES: To examine how accurately proxies evaluate quality of life (QoL) in people they know, using cross-cultural data from the multidimensional, multilingual World Health Organization Quality of Life assessment short-form (the WHOQOL-BREF) and whether accuracy varies by health condition or proxy type (eg, family/professional). STUDY DESIGN AND SETTING: Systematic review with meta-analysis: We searched five databases for reports of proxy-completed WHOQOL-BREF scores and aggregated results using a random-effects model. Minimal clinically important difference values were calculated. RESULTS: Analyses included nine studies (1980 dyads) of physical (n = 762) or mental (n = 604) health conditions, or intellectual disability (n = 614), in 10 countries. Mean person-proxy correlations ranged from 0.28 (social QoL) to 0.44 (physical QoL). Proxy measures were underestimates (ie, significantly lower than persons reported for themselves) for social [mean difference (MD) = 4.7, 95% confidence interval (CI): 1.8, 7.6], psychological (MD = 3.7, 95% CI: 0.6, 6.8), and physical (MD = 3.1, 95% CI: 0.6, 5.6) QoL. Underestimates varied significantly between health conditions for social (P < 0.001), psychological (P = 0.009), and physical (P = 0.02) QoL. Family members assessed psychological and environmental QoL better than professionals. CONCLUSION: Proxies tend to be imprecise, underestimating QoL, and should be aware of this tendency. Where health care is decided for others, family members' views about QoL should be prioritized.