Patients' views and experiences on the supported self-management/patient-initiated follow up pathway for breast cancer.

PURPOSE: To explore patients' expectations and experience of Supportive Self-Management (SSM)/ Patient Initiated Follow Up (PIFU) following breast cancer treatments over a 12-month period. METHODS: In total, 32/110 (29%) patient participants in the PRAGMATIC (Patients' experiences of a suppoRted self-manAGeMent pAThway In breast Cancer) study were interviewed at baseline, 3, 6, 9 and 12 months. Interviews in this sub-study used a mix-methods approach to explore understanding of the pathway, confidence in self-management, triggers to seek help and/or re-engage with the clinical breast team and impact of the COVID-19 pandemic. Responses to pre-assigned categories were summarised as counts/ percentages and collated in tabular or graphic format. Free responses were recorded verbatim and reviewed using framework analysis. RESULTS: Participants regarded the SSM/PIFU pathway as a way to save time and money for them and the National Health Service (NHS) (14/32; 44%) and as a means of assuming responsibility for their own follow-up (18/32; 56%). Most maintained (very/somewhat) confidence in managing their BC follow-up care (baseline 31/32, 97%; 12 months 29/31, 93%). During the year, 19% (5/26) stopped endocrine therapy altogether because of side effects. Qualitative analysis revealed general satisfaction with SSM/PIFU and described the breast care nurses as reassuring and empathic. However, there was a lingering anxiety about identifying signs and symptoms correctly, particularly for those with screen-detected cancers. There was also uncertainty about who to contact for psychological support. The COVID-19 pandemic discouraged some participants from contacting the helpline as they did not want to overburden the NHS. CONCLUSIONS: The results show that during the first year on the SSM/PIFU pathway, most patients felt confident managing their own care. Clinical teams should benefit from understanding patients' expectations and experiences and potentially modify the service for men with BC and/or those with screen-detected breast cancers.

Patients' experiences of a suppoRted self-manAGeMent pAThway In breast Cancer (PRAGMATIC): quality of life and service use results.

PURPOSE: To describe trends and explore factors associated with quality of life (QoL) and psychological morbidity and assess breast cancer (BC) health service use over a 12-month period for patients joining the supported self-management (SSM)/patient-initiated follow-up (PIFU) pathway. METHODS: Participants completed questionnaires at baseline, 3, 6, 9 and 12 months that measured QoL (FACT-B, EQ 5D-5L), self-efficacy (GSE), psychological morbidity (GHQ-12), roles and responsibilities (PRRS) and service use (cost diary). RESULTS: 99/110 patients completed all timepoints; 32% (35/110) had received chemotherapy. The chemotherapy group had poorer QoL; FACT-B total score mean differences were 8.53 (95% CI: 3.42 to 13.64), 5.38 (95% CI: 0.17 to 10.58) and 8.00 (95% CI: 2.76 to 13.24) at 6, 9 and 12 months, respectively. The odds of psychological morbidity (GHQ12 >4) were 5.5-fold greater for those treated with chemotherapy. Financial and caring burdens (PRRS) were worse for this group (mean difference in change at 9 months 3.25 (95% CI: 0.42 to 6.07)). GSE and GHQ-12 scores impacted FACT-B total scores, indicating QoL decline for those with high baseline psychological morbidity. Chemotherapy patients or those with high psychological morbidity or were unable to carry out normal activities had the highest service costs. Over the 12 months, 68.2% participants phoned/emailed breast care nurses, and 53.3% visited a hospital breast clinician. CONCLUSION: The data suggest that chemotherapy patients and/or those with heightened psychological morbidity might benefit from closer monitoring and/or supportive interventions whilst on the SSM/PIFU pathway. Reduced access due to COVID-19 could have affected service use.

Supported self-management for all with musculoskeletal pain: an inclusive approach to intervention development: the EASIER study.

BACKGROUND: Supported self-management interventions for patients with musculoskeletal (MSK) conditions may not adequately support those with limited health literacy, leading to inequalities in care and variable outcomes. The aim of this study was to develop a model for inclusive supported self-management intervention(s) for MSK pain that take account of health literacy. METHODS: A mixed methods study with four work-packages was conducted: work package 1: secondary analysis of existing data to identify potential targets for intervention; work package 2: evidence synthesis to assess effective components of self-management interventions taking into account health literacy; work package 3: views of community members and healthcare professionals (HCPs) on essential components; work package 4: triangulation of findings and an online modified Delphi approach to reach consensus on key components of a logic model. FINDINGS: Findings identified targets for intervention as self-efficacy, illness perceptions, and pain catastrophizing. A range of intervention components were identified (e.g. information in diverse formats offered at specific times, action planning and visual demonstrations of exercise). Support should be multi-professional using a combination of delivery modes (e.g. remote, face-to-face). CONCLUSIONS: This research has developed a patient-centred model for a multi-disciplinary, multi-modal approach to supported self-management for patients with MSK pain and varying levels of health literacy. The model is evidence-based and acceptable to both patients and HCPs, with potential for significant impact on the management of MSK pain and for improving patient health outcomes. Further work is needed to establish its efficacy.

European principles of care for physiotherapy provision for persons with inherited bleeding disorders: Perspectives of physiotherapists and patients.

INTRODUCTION: In their Chronic Care Model, the World Health Organisation states that people with chronic disorders and their families should be informed about the expected course, potential complications, and effective strategies to prevent complications and manage symptoms. Physiotherapists are a key professional group involved in the triage, assessment and management of musculoskeletal conditions of persons with a bleeding disorder (PWBD). Nevertheless, recent reports describe access to physiotherapy for those with these conditions is only sometimes available. AIM: Access to high quality individualised physiotherapy should be ensured for all PWBD, including those with mild and moderate severities, male and female, people with von Willebrand Disease (vWD) and other rare bleeding disorders. Physiotherapy should be viewed as a basic requisite in their multidisciplinary care. METHODS/ RESULTS: Following a series of meetings with physiotherapists representing the European Association for Haemophilia and Allied Disorders (EAHAD) and PWBD representing the European Haemophilia Consortium (EHC) and a review of publications in the field, eight core principles of physiotherapy care for persons with a bleeding disorder have been co-produced by EAHAD and EHC. CONCLUSION: These eight principles outline optimum standards of practice in order to advocate personalised patient-centred care for physical health in which both prevention and interventions include shared decision making, and supported self-management.

Insights into how Malaysian adults with limited health literacy self-manage and live with asthma: A Photovoice qualitative study.

BACKGROUND: Adjusting to life with a chronic condition is challenging, especially for people with limited health literacy, which is associated with low compliance with self-management activities and poor clinical outcomes. OBJECTIVE: We explored how people with limited health literacy understand asthma and undertake self-management practices. DESIGN: We adapted the arts-based qualitative methodology Photovoice. SETTING AND PARTICIPANTS: We sampled ethnically diverse adults with asthma and limited health literacy from four primary healthcare clinics in Malaysia. After a semistructured in-depth interview, a subset of participants took part in the Photovoice component in which participants undertook a 2-week photo-taking activity and subsequent photo-interview. Interviews, conducted in participants' preferred language, were audio-recorded, transcribed verbatim, translated and analysed thematically. We used the Sorensen's framework (Domains: access, understand, appraise, apply) to describe participants' experience of living with asthma, what they understood about asthma and how they decided on self-management practices. RESULTS: Twenty-six participants provided interviews; eight completed the Photovoice activities. Participants with limited health literacy used various sources to access information about asthma and self-management. Doctor-patient communication had a pivotal role in helping patients understand asthma. The lack of appraisal skills was significant and experiential knowledge influenced how they applied information. Self-management decisions were influenced by sociocultural norms/practices, stigmatizing experiences, and available social support. CONCLUSION: Locally tailored multilevel interventions (interpersonal, health system, community and policy) will be needed to support people with limited health literacy to live optimally with their asthma in an ethnically diverse population. PATIENT/PUBLIC CONTRIBUTION: Patients were involved in the study design, recruitment, analysis and dissemination.

Delivery of supported self-management in remote asthma reviews: A systematic rapid realist review.

BACKGROUND: The COVID-19 pandemic forced health care systems globally to adapt quickly to remote modes of health care delivery, including for routine asthma reviews. A core component of asthma care is supporting self-management, a guideline-recommended intervention that reduces the risk of acute attacks, and improves asthma control and quality of life. OBJECTIVE: We aimed to explore context and mechanisms for the outcomes of clinical effectiveness, acceptability and safety of supported self-management delivery within remote asthma consultations. DESIGN: The review followed standard methodology for rapid realist reviews. An External Reference Group (ERG) provided expert advice and guidance throughout the study. We systematically searched four electronic databases and, with ERG advice, selected 18 papers that explored self-management delivery during routine asthma reviews. SETTING, PARTICIPANTS AND INTERVENTION: Health care professional delivery of supported self-management for asthma patients during remote (specifically including telephone and video) consultations. MAIN OUTCOME MEASURES: Data were extracted using Context-Mechanism-Outcome (C-M-O) configurations and synthesised into overarching themes using the PRISMS taxonomy of supported self-management as a framework to structure the findings. RESULTS: The review findings identified how support for self-management delivered remotely was acceptable (often more acceptable than in-person consultations), and was a safe and effective alternative to face-to-face reviews. In addition, remote delivery of supported self-management was associated with; increased patient convenience, improved access to and attendance at remote reviews, and offered continuity of care. DISCUSSION: Remote delivery of supported self-management for asthma was generally found to be clinically effective, acceptable, and safe with the added advantage of increasing accessibility. Remote reviews could provide the core content of an asthma review, including remote completion of asthma action plans. CONCLUSION: Our findings support the option of remote delivery of routine asthma care for those who have this preference, and offer healthcare professionals guidance on embedding supported self-management into remote asthma reviews. PATIENT AND PUBLIC CONTRIBUTION: Patient and public contribution was provided by a representative of the Asthma UK Centre for Applied Research (AUKCAR) patient and public involvement (PPI) group. The PPI representative reviewed the findings, and feedback and comments were considered. This lead to further interpretations of the data which were included in the final manuscript.

A pilot clinical trial of a self-management intervention in patients with a left ventricular assist device.

Self-management is a health behavior known to predict treatment outcomes in patients with multiple co-morbidities and/or chronic conditions. However, the self-management process and outcomes in the left-ventricular assist device (LVAD) population are understudied. This pilot randomized control trial (RCT) evaluated the feasibility of a novel "smartphone app-directed and nurse-supported self-management intervention" in patients implanted with durable LVADs. Assessments included behavioral (self-efficacy and adherence), clinical (complications), and healthcare utilization (unplanned clinic, emergency room (ER) visits, and re-hospitalization) outcomes, completed at baseline (pre-hospital discharge) and months 1, 3, and 6 post-hospital discharge. Intervention patients (n = 14) had favorable patterns/trends of results across study outcomes than control patients (n = 16). Notably, intervention patients had much lower complications and healthcare utilization rates than controls. For example, intervention patients had 2 (14.3%) driveline infections in 6 months while control patients had 3 (19.0%). Additionally, at month 3, intervention patients had 0% ER visits versus 36% of control patients. At month 6, the mean cumulative number of re-hospitalizations for the control group was higher (0.9 ± 0.93) than intervention (0.3 ± 0.61) group. Despite the small sample size and limitations of feasibility/pilot studies, our outcomes data appeared to favor the novel intervention. Lessons learned from this study suggest the intervention should be implemented for 6 months post-hospital discharge. Further research is needed including large and rigorous multi-center RCTs to generate knowledge explaining the mechanism of the effect of self-management on LVAD treatment outcomes.

Patients' and Clinicians' Visions of a Future Internet-of-Things System to Support Asthma Self-Management: Mixed Methods Study.

BACKGROUND: Supported self-management for asthma reduces acute attacks and improves control. The internet of things could connect patients to health care providers, community services, and their living environments to provide overarching support for self-management. OBJECTIVE: We aimed to identify patients' and clinicians' preferences for a future internet-of-things system and explore their visions of its potential to support holistic self-management. METHODS: In an exploratory sequential mixed methods study, we recruited patients from volunteer databases and charities' social media. We purposively sampled participants to interview them about their vision of the design and utility of the internet of things as a future strategy for supporting self-management. Respondents who were not invited to participate in the interviews were invited to complete a web-based questionnaire to prioritize the features suggested by the interviewees. Clinicians were recruited from professional networks. Interviews were transcribed and analyzed thematically using PRISMS self-management taxonomy. RESULTS: We interviewed 12 patients and 12 clinicians in the United Kingdom, and 140 patients completed the web-based questionnaires. Patients expressed mostly wanting a system to log their asthma control status automatically; provide real-time advice to help them learn about their asthma, identify and avoid triggers, and adjust their treatment. Peak flow (33/140, 23.6%), environmental (pollen, humidity, air temperature) (33/140, 23.6%), and asthma symptoms (25/140, 17.9%) were the specific data types that patient most wanted. Information about asthma and text or email access to clinical advice provided a feeling of safety for patients. Clinicians wanted automated objective data about the patients' condition that they could access during consultations. The potential reduction in face-to-face consultations was appreciated by clinicians which they perceived could potentially save patients' travel time and health service resources. Lifestyle logs of fitness regimes or weight control were valued by some patients but were of less interest to clinicians. CONCLUSIONS: An automated internet-of-things system that requires minimal input from the user and provides timely advice in line with an asthma action plan agreed by the patient with their clinician was preferred by most respondents. Links to asthma information and the ability to connect with clinicians by text or email were perceived by patients as features that would provide a sense of safety. Further studies are needed to evaluate the usability and effectiveness of internet-of-things systems in routine clinical practice.

Using e-health tools and PROMs to support self-management in patients with inflammatory bowel disease.

BACKGROUND: The use of digital health or e-health is growing. The potential positive impact on IBD care from supported self-management using these tools emerged from a literature review carried out in preparation for a service improvement project. A patient-reported outcomes measure (PROM) with validation across IBD sub-types was already available for use. This internationally recognised tool has potential for use with existing or new e-health systems. AIMS: In order to test the concept of using PROMs to support practice and follow up a small-scale pilot study was designed. The aim of the study was to understand if empowering patients to undertake supported self-management could lead in turn to improved flow through outpatient services. METHODS: An audit was carried out of PROMs looking at quality of life (QoL) as well as disease activity using an electronic platform in real time at the point of patient contact. The disease activity indices used were the Harvey Bradshaw Index and the Simple Clinical Colitis Activity Index, due to the author's familiarity with these tools. RESULTS: Of the 15 participants, 10 reported themselves as 'well' or 'well with questions' all participants reported an acceptance of supported remote self-management using e-health. CONCLUSION: This evaluation led to PROMs being captured on a tablet in the outpatient setting in the pre-pandemic period. Allowing patients to use the PROM as a tool in the outpatient setting has led to longitudinal data being added to the e-health system for each individual. Well patients could be managed remotely, freeing capacity in outpatient clinics.

Follow-up care after treatment for prostate cancer: evaluation of a supported self-management and remote surveillance programme.

BACKGROUND: Alternative models of cancer follow-up care are needed to ameliorate pressure on services and better meet survivors' long-term needs. This paper reports an evaluation of a service improvement initiative for the follow-up care of prostate cancer patients based on remote monitoring and supported self-management. METHODS: This multi-centred, historically controlled study compared patient reported outcomes of men experiencing the new Programme with men experiencing a traditional clinic appointment model of follow-up care, who were recruited in the period immediately prior to the introduction of the Programme. Data were collected by self-completed questionnaires, with follow up measurement at four and eight months post-baseline. The primary outcome was men's unmet survivorship needs, measured by the Cancer Survivors' Unmet Needs Survey. Secondary outcomes included cancer specific quality of life, psychological wellbeing and satisfaction with care. The analysis was intention to treat. Regression analyses were conducted for outcomes at each time point separately, controlling for pre-defined clinical and demographic variables. All outcome analyses are presented in the paper. Costs were compared between the two groups. RESULTS: Six hundred and twenty-seven men (61%) were consented to take part in the study (293 in the Programme and 334 in the comparator group.) Regarding the primary measure of unmet survivorship needs, 25 of 26 comparisons favoured the Programme, of which 4 were statistically significant. For the secondary measures of activation for self-management, quality of life, psychological well-being and lifestyle, 20 of 32 comparisons favoured the Programme and 3 were statistically significant. There were 22 items on the satisfaction with care questionnaire and 13 were statistically significant. Per participant costs (British pounds, 2015) in the 8 month follow up period were slightly lower in the programme than in the comparator group (£289 versus £327). The Programme was acceptable to patients. CONCLUSION: The Programme is shown to be broadly comparable to traditional follow-up care in all respects, adding to evidence of the viability of such models.

Systematic meta-review of supported self-management for asthma: a healthcare perspective.

BACKGROUND: Supported self-management has been recommended by asthma guidelines for three decades; improving current suboptimal implementation will require commitment from professionals, patients and healthcare organisations. The Practical Systematic Review of Self-Management Support (PRISMS) meta-review and Reducing Care Utilisation through Self-management Interventions (RECURSIVE) health economic review were commissioned to provide a systematic overview of supported self-management to inform implementation. We sought to investigate if supported asthma self-management reduces use of healthcare resources and improves asthma control; for which target groups it works; and which components and contextual factors contribute to effectiveness. Finally, we investigated the costs to healthcare services of providing supported self-management. METHODS: We undertook a meta-review (systematic overview) of systematic reviews updated with randomised controlled trials (RCTs) published since the review search dates, and health economic meta-analysis of RCTs. Twelve electronic databases were searched in 2012 (updated in 2015; pre-publication update January 2017) for systematic reviews reporting RCTs (and update RCTs) evaluating supported asthma self-management. We assessed the quality of included studies and undertook a meta-analysis and narrative synthesis. RESULTS: A total of 27 systematic reviews (n = 244 RCTs) and 13 update RCTs revealed that supported self-management can reduce hospitalisations, accident and emergency attendances and unscheduled consultations, and improve markers of control and quality of life for people with asthma across a range of cultural, demographic and healthcare settings. Core components are patient education, provision of an action plan and regular professional review. Self-management is most effective when delivered in the context of proactive long-term condition management. The total cost (n = 24 RCTs) of providing self-management support is offset by a reduction in hospitalisations and accident and emergency visits (standard mean difference 0.13, 95% confidence interval -0.09 to 0.34). CONCLUSIONS: Evidence from a total of 270 RCTs confirms that supported self-management for asthma can reduce unscheduled care and improve asthma control, can be delivered effectively for diverse demographic and cultural groups, is applicable in a broad range of clinical settings, and does not significantly increase total healthcare costs. Informed by this comprehensive synthesis of the literature, clinicians, patient-interest groups, policy-makers and providers of healthcare services should prioritise provision of supported self-management for people with asthma as a core component of routine care. SYSTEMATIC REVIEW REGISTRATION: RECURSIVE: PROSPERO CRD42012002694 ; PRISMS: PROSPERO does not register meta-reviews.

Supported self-management in long-term conditions in an African context.

Self-management is an important strategy to improve quality of life, appropriately manage long-term health conditions, and reduce the economic burden of long-term health conditions. However, equitable healthcare access remains an issue, and the focus on 'self' in self-management is problematic. Our review aims to explore the conceptualisation and evolution of supported self-management in an African context and its relevance to physiotherapy. A state-of-the-art review of the literature was undertaken by the authors. The authors knowledge of the subject area and a database search retrieved recent articles exploring patients' and healthcare providers' understanding of supported self-management in Africa. Relevant articles were read, and data summaries of included studies were extracted and tabulated. Findings were organised deductively. Sixteen studies, 11 primary research, and 5 reviews (2016-2023) undertaken in a variety of sub-Saharan countries with healthcare workers (~n = 177) and people (~n = 16 115) living with a mix of non-communicable and communicable conditions were considered in this state-of-the-art review. Self-management perceptions were drawn from Western authors spanning development research and understanding of the concepts in Western thinking. We conclude that imported concepts, such as supported self-management for long-term conditions, should be considered within local health delivery solutions. These should be embedded in an understanding of traditional African health systems. Clinical implications: There is a need to develop locally derived African solutions. Self-management strategies for long-term health conditions should be developed, considering traditional holistic African health systems.

IMP2ART: development of a multi-level programme theory integrating the COM-B model and the iPARIHS framework, to enhance implementation of supported self-management of asthma in primary care.

BACKGROUND: Supported asthma self-management, incorporating an asthma action plan and annual clinical review, has been recommended by UK/global guidelines for over three decades. However, implementation remains poor, as only around a third of individuals receive basic asthma care, according to the UKs leading respiratory charity Asthma and Lung UK. A systematic review of implementation studies recommended that a whole systems approach targeting patients, healthcare professional education, and organisations is needed to improve implementation of supported asthma self-management in primary care. The IMPlementing IMProved Asthma self-management as RouTine (IMP2ART) is a national Hybrid-II implementation cluster randomised controlled trial that aims to evaluate such an approach. This paper describes the development of the implementation strategy for IMP2ART with particular focus on the integration of multiple level theories. METHODS: The Medical Research Council design and evaluation of complex interventions framework and the Person-Based Approach to intervention development were used as guidance for stages of strategy development. Specifically, we (i) set up a multidisciplinary team (including practicing and academic clinicians, health psychologists, public health and patient colleagues), (ii) reviewed and integrated evidence and theory, (iii) developed guiding principles, (iv) developed prototype materials, and (v) conducted a pre-pilot study before final refinement. RESULTS: The implementation strategy included resources for patients, team-based and individual healthcare professional education, practice audit and feedback, and an asthma review template, as well as a facilitator role accessible to primary care practices for 12 months. The synthesis of the integrated Promoting Action on Research Implementation in Health Services (iPARIHS) and Capability, Opportunity, Motivation and Behaviour (COM-B) frameworks led to an evolved framework bringing together important implementation and behaviour change elements which will be used as a basis for the study process evaluation. CONCLUSIONS: A description of rigorous implementation strategy development for the IMP2ART study is provided along with newly theorised integration of implementation and behaviour change science which may be of benefit to others targeting implementation in primary care. TRIAL REGISTRATION: ISRCTN15448074. Registered on 2nd December 2019.

What is important in supporting self-management in community stroke rehabilitation? A Q methodology study.

PURPOSE: Supported self-management (SSM) is an important part of adapting to life after stroke however it is a complex concept. It is unclear what SSM in stroke consists of or how stroke survivors, families, and clinicians can most effectively work together to support person-centred self-management. In this study, we aimed to explore what was most important in making SSM work in community stroke rehabilitation. METHODS: We conducted a Q-methodology study with stroke survivors (n = 20), community-based stroke clinicians (n = 20), and team managers (n = 8) across four health boards in Scotland, United Kingdom. Participants ranked 32 statements according to their importance in making SSM work. Factor analysis was used to identify shared viewpoints. RESULTS: We identified four viewpoints: (i) A person-centred approach to build self-confidence and self-worth; (ii) Feeling heard, understood, and supported by everybody; (iii) Preparation of appropriate resources; and (iv) Right thing, right place, right time for the individual. Important across all viewpoints were: a trusting supportive relationship; working in partnership; focusing on meaningful goals; and building self-confidence. CONCLUSIONS: Differing views exist on what is most important in SSM. These views could be used to inform quality improvement strategies to support the delivery of SSM that considers the preferences of stroke survivors. IMPLICATIONS FOR REHABILITATIONClinicians should be aware of their own viewpoint of supported self-management and consider how their perspective may differ from stroke survivors' and colleagues' perspectives of what's important to support self-management.Working in partnership with stroke survivors plus developing a trusting and supportive relationship with them are core components of supporting self-management in the longer term after stroke.Building a sense of self-worth and self-confidence, a focus on meaningful goals, training and support for staff, and tailoring support to people's needs at the right time are important considerations for supporting longer-term engagement in self-management.

Integrating an approach to personalised self-management support in stroke and neurorehabilitation service contexts: People1st - a quality improvement initiative.

PURPOSE: People living with stroke and neurological conditions access rehabilitation at different times but self-management is often viewed as what happens post-discharge. Personalised models that integrate self-management support within everyday care are now advocated but this may require practitioners to change their behaviour to adopt and sustain new ways of working. The People1st project evaluated integration of an existing Supported Self-Management programme ("Bridges") across varied stroke and neurorehabilitation service contexts. MATERIALS AND METHODS: Mixed-method evaluation of training for groups of healthcare practitioners across 24 UK National Health Service (NHS) Trusts, exploring how learning from Bridges was assimilated and enacted in practice, on an individual and collective basis. RESULTS: Staff growth in confidence and skill around supported self-management was demonstrated. Transformations to practice included changes to: the structure of, and language used in, patient interactions; induction/training processes to increase potential for sustainability; and sharing of successes. Bridges helped practitioners make changes that brought them closer to their professional ideals. Engaged leadership was considered important for successful integration. CONCLUSIONS: Bridges was successfully integrated within a wide range of stroke and neurorehabilitation service contexts, enabled by an approach in line with practitioners' values-based motivations. Further work is required to explore sustainability and impact on service users. Implications for rehabilitationPersonalised models of care and support for self-management are advocated for people living with stroke and neurological conditions; this requires practitioners to be supported to change behaviour and practices to adopt and sustain new ways of working.Staff from a wide variety of backgrounds in neurorehabilitation and stroke can learn collaboratively about self-management practices via the Bridges programme and can integrate those practices into their service contexts.Bridges can take practitioners closer to their professional ideals of caring and making a difference and empowers them to initiate change.Organisational commitment and engaged leadership are required to facilitate a culture of support for self-management in practice.

Promoting Self-management and Patient Activation Through eHealth: Protocol for a Systematic Literature Review and Meta-analysis.

BACKGROUND: Major advances in different cancer treatment modalities have been made, and people are now living longer with cancer. However, patients with cancer experience a range of physical and psychological symptoms during and beyond cancer treatment. New models of care are needed to combat this rising challenge. A growing body of evidence supports the effectiveness of eHealth interventions in the delivery of supportive care to people living with the complexities of chronic health conditions. However, reviews on the effects of eHealth interventions are scarce in the field of cancer-supportive care, particularly for interventions with the aim of empowering patients to manage cancer treatment-related symptoms. For this reason, this protocol has been developed to guide a systematic review and meta-analysis to assess the effectiveness of eHealth interventions for supporting patients with cancer in managing cancer-related symptoms. OBJECTIVE: This systematic review with meta-analysis is conducted with the aim of identifying eHealth-based self-management intervention studies for adult patients with cancer and evaluating the efficacy of eHealth-based self-management tools and platforms in order to synthesize the empirical evidence on self-management and patient activation through eHealth. METHODS: A systematic review with meta-analysis and methodological critique of randomized controlled trials is conducted following Cochrane Collaboration methods. Multiple data sources are used to identify all potential research sources for inclusion in the systematic review: (1) electronic databases such as MEDLINE, (2) forward reference searching, and (3) gray literature. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines for conducting the review were followed. The PICOS (Population, Interventions, Comparators, Outcomes, and Study Design) framework is used to identify relevant studies. RESULTS: The literature search yielded 10,202 publications. The title and abstract screening were completed in May 2022. Data will be summarized, and if possible, meta-analyses will be performed. It is expected to finalize this review by Winter 2023. CONCLUSIONS: The results of this systematic review will provide the latest data on leveraging eHealth interventions and offering effective and sustainable eHealth care, both of which have the potential to improve quality and efficiency in cancer-related symptoms. TRIAL REGISTRATION: PROSPERO 325582; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=325582. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38758.

Effect of Disease Severity, Age of Child, and Clinic No-Shows on Unscheduled Healthcare Use for Childhood Asthma at an Academic Medical Center.

This study examines the influence of various individual demographic and risk factors on the use of unscheduled healthcare (emergency and inpatient visits) among pediatric outpatients with asthma over three retrospective timeframes (12, 18, and 24 months) at an academic health center. Out of a total of 410 children who visited an academic medical center for asthma outpatient care between 2019 and 2020, 105 (26%) were users of unscheduled healthcare for childhood asthma over the prior 12 months, 131 (32%) over the prior 18 months, and 147 (36%) over the prior 24 months. multiple logistic regression (MLR) analysis of the effect of individual risk factors revealed that asthma severity, age of child, and clinic no-shows were statistically significant predictors of unscheduled healthcare use for childhood asthma. Children with higher levels of asthma severity were significantly more likely to use unscheduled healthcare (compared to children with lower levels of asthma severity) across all three timeframes. Likewise, children with three to four clinic no-shows were significantly more likely to use unscheduled healthcare compared to children with zero clinic no-shows in the short term (12 and 18 months). In contrast, older children were significantly less likely to use unscheduled healthcare use compared to younger children in the longer term (24 months). By virtue of its scope and design, this study provides a foundation for addressing a need identified in the literature for short- and long-term strategies for improving supported self-management and reducing unscheduled healthcare use for childhood asthma at the patient, provider, and organizational levels, e.g., (1) implementing telehealth services for asthma outpatient care to reduce clinic no-shows across all levels of asthma severity in the short term; (2) developing a provider-patient partnership to enable patient-centered asthma control among younger children with higher asthma severity in the long term; and (3) identifying hospital-community linkages to address social risk factors influencing clinic no-shows and unscheduled healthcare use among younger children with higher asthma severity in the long term.

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 ).

Feasibility and acceptability of an evidence-informed digital intervention to support self-management in people with non-alcoholic fatty liver disease: protocol for a non-randomised feasibility study (VITALISE).

BACKGROUND: Non-alcoholic fatty liver disease (NAFLD) represents a spectrum of disease ranging from simple fatty liver to non-alcoholic steatohepatitis, cirrhosis, liver cancer and liver failure. NAFLD affects up to 30-40% of adults in Western countries and is directly linked to overweight and obesity. There are no approved drugs to specifically target NAFLD, therefore weight loss achieved through changes in dietary and physical activity behaviours is the recommended management approach. However, achieving and sustaining weight loss is challenging for patients with NAFLD. We developed a NAFLD-specific digital lifestyle intervention (VITALISE) to target changes in dietary and physical activity behaviours of patients with NAFLD to initiate weight loss and weight loss maintenance. This study aims to evaluate the feasibility and acceptability of VITALISE in a secondary care clinical setting. METHODS: A single-centre, one-arm, prospective design will be used to assess the feasibility and acceptability of recruitment, uptake, engagement and completion of VITALISE. Health-related outcomes will be assessed at baseline and 6-months. An interim measure of self-reported weight, physical activity and self-efficacy will be recorded at 12-weeks. Qualitative semi-structured interviews conducted at 6 months follow up will further explore acceptability and feasibility and fidelity of receipt and enactment. The study aims to recruit 35 patients with newly diagnosed NAFLD over a 6-month time period. Eligible patients will have continuous access to VITALISE and monthly tele-coaching support for 6 months prior to follow-up with a hepatologist. DISCUSSION: VITALISE offers access to evidence and theory-informed tailored dietary and physical activity support for patients with NAFLD. The intervention is designed for use by patients in their own time, outside of the hospital setting to overcome well documented challenges including attending additional appointments, and lack of time during routine appointments to adequately address lifestyle behaviour change. This feasibility study will determine the feasibility of VITALISE to support clinical care delivery. TRIAL REGISTRATION: ISRCTN12893503.

Personalised management and supporting individuals to live with their asthma in a primary care setting.

INTRODUCTION: Complementing recognition of biomedical phenotypes, a primary care approach to asthma care recognizes diversity of disease, health beliefs, and lifestyle at a population and individual level. AREAS COVERED: We review six aspects of personalized care particularly pertinent to primary care management of asthma: personalizing support for individuals living with asthma; targeting asthma care within populations; managing phenotypes of wheezy pre-school children; personalizing management to the individual; meeting individual preferences for provision of asthma care; optimizing digital approaches to enhance personalized care. EXPERT OPINION: In a primary care setting, personalized management and supporting individuals to live with asthma extend beyond the contemporary concepts of biological phenotypes and pharmacological 'treatable traits' to encompass evidence-based tailored support for self-management, and delivery of patient-centered care including motivational interviewing. It extends to how we organize clinical practiceand the choices provided in mode of consultation. Diagnostic uncertainty due to recognition of phenotypes of pre-school wheeze remains a challenge for primary care. Digital health can support personalized management, but there are concerns about increasing inequities. This broad approach reflects the traditionally holistic ethos of primary care ('knowing their patients and understanding their communities'), but the core concepts resonate with all healthcare.