Views of patients with progressive illness and carers about the role of digital advance care planning systems to record and share information: A qualitative study.

BACKGROUND: Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care. AIM: To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development. DESIGN: A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews. SETTING/PARTICIPANTS: Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents. RESULTS: Four generated themes included: 1. 'Why haven't you read what's wrong with me?'; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having 'a say in matters': control and responsibility; 4. Enabling patient and carer control of their records: 'custodianship is key'. CONCLUSIONS: Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems.

Improving the Detection, Assessment, Management and Prevention of Delirium in Hospices (the DAMPen-D study): Feasibility study of a flexible and scalable implementation strategy to deliver guideline-adherent delirium care.

BACKGROUND: Delirium is a complex condition, stressful for all involved. Although highly prevalent in palliative care settings, it remains underdiagnosed and associated with poor outcomes. Guideline-adherent delirium care may improve its detection, assessment and management. AIM: To inform a future definitive study that tests whether an implementation strategy designed to improve guideline-adherent delirium care in palliative care settings improves patient outcomes (reduced proportion of in-patient days with delirium). DESIGN: With Patient Involvement members, we conducted a feasibility study to assess the acceptability of and engagement with the implementation strategy by hospice staff (intervention), and whether clinical record data collection of process (e.g. guideline-adherent delirium care) and clinical outcomes (evidence of delirium using a validated chart-based instrument;) pre- and 12-weeks post-implementation of the intervention would be possible. SETTING/PARTICIPANTS: In-patient admissions in three English hospices. RESULTS: Between June 2021 and December 2022, clinical record data were extracted from 300 consecutive admissions. Despite data collection during COVID-19, target clinical record data collection (n = 300) was achieved. Approximately two-thirds of patients had a delirium episode during in-patient stay at both timepoints. A 6% absolute reduction in proportion of delirium days in those with a delirium episode was observed. Post-implementation improvements in guideline-adherent metrics include: clinical delirium diagnosis 15%-28%; delirium risk assessment 0%-16%; screening on admission 7%-35%. CONCLUSIONS: Collection of data on delirium outcomes and guideline-adherence from clinical records is feasible. The signal of patient benefit supports formal evaluation in a large-scale study.

High INtensity Interval Training in pATiEnts with Intermittent Claudication: A Qualitative Acceptability Study.

BACKGROUND: A novel high-intensity interval training (HIIT) program has demonstrated feasibility for patients with intermittent claudication (IC). The aim of this study was to explore patient perspectives of the HIIT program to inform refinement and future research. METHODS: All patients screened and eligible for the 'high intensity interval training in patients with intermittent claudication (INITIATE)' study were eligible to take part in a semistructured interview. A convenience subsample of patients was selected from 3 distinct groups: 1) those who completed the HIIT program, 2) those who prematurely discontinued the HIIT program, and 3) those who declined the HIIT program. Interviews considered patients views of the program and experiences of undertaking and/or being invited to undertake it. Interviews were audio recorded, transcribed verbatim, and analyzed via thematic analysis. RESULTS: Eleven out of 31 participants who completed the program and 12 out of 38 decliners were interviewed. No participants who withdrew from the program agreed to interview. The 3 key themes were; personal reflections of the program; program facilitators and barriers; and perceived benefits. Completers enjoyed taking part, reported symptomatic improvement and would complete it again. Practical and psychological barriers exist, such as transport and motivation. Changes to the program were suggested. CONCLUSIONS: Findings support the acceptability of this novel HIIT program, which in combination with the feasibility findings, suggest that a fully powered randomized controlled trial, comparing HIIT to usual-care supervised exercise programs is warranted.

Factors Influencing the Implementation of Digital Advance Care Planning: Qualitative Interview Study.

BACKGROUND: Palliative care aims to improve the quality of life for people with life-limiting illnesses. Advance care planning conversations that establish a patient's wishes and preferences for care are part of a person-centered approach. Internationally, electronic health record systems are digital interventions used to record and share patients' advance care plans across health care services and settings. They aim to provide tools that support electronic information sharing and care coordination. Within the United Kingdom, Electronic Palliative Care Coordination Systems (EPaCCS) are an example of this. Despite over a decade of policy promoting EPaCCS nationally, there has been limited implementation and consistently low levels of use by health professionals. OBJECTIVE: The aim of this study is to explore the factors that influence the implementation of EPaCCS into routine clinical practice across different care services and settings in 2 major regions of England. METHODS: A qualitative interview study design was used, guided by Normalization Process Theory (NPT). NPT explores factors affecting the implementation of complex interventions and consists of 4 primary components (coherence, cognitive participation, collective action, and reflexive monitoring). Health care and social care practitioners were purposively sampled based on their professional role and work setting. Individual web-based semistructured interviews were conducted. Data were analyzed using thematic framework analysis to explore issues which affected the implementation of EPaCCS across different settings at individual, team, organizational, and technical levels. RESULTS: Participants (N=52) representing a range of professional roles were recruited across 6 care settings (hospice, primary care, care home, hospital, ambulatory, and community). In total, 6 themes were developed which mapped onto the 4 primary components of NPT and represented the multilevel influences affecting implementation. At an individual level, these included (1) EPaCCS providing a clear and distinct way of working and (2) collective contributions and buy-in. At a team and organizational level, these included (3) embedding EPaCCS into everyday practice and (4) championing driving implementation. At a technical level, these included (5) electronic functionality, interoperability, and access. Breakdowns in implementation at different levels led to variations in (6) confidence and trust in EPaCCS in terms of record accuracy and availability of access. CONCLUSIONS: EPaCCS implementation is influenced by individual, organizational, and technical factors. Key challenges include problems with access alongside inconsistent use and engagement across care settings. EPaCCS, in their current format as digital advance care planning systems are not consistently facilitating electronic information sharing and care coordination. A redesign of EPaCCS is likely to be necessary to determine configurations for their optimal implementation across different settings and locations. This includes supporting health care practitioners to document, access, use, and share information across multiple care settings. Lessons learned are relevant to other forms of digital advance care planning approaches being developed internationally.

Using PURPOSE-T in clinical practice: A realist evaluation.

AIM: To explain how the clinical and organisational context influenced the way the Pressure Ulcer Risk Primary or Secondary Evaluation Tool (PURPOSE-T) is used by nursing staff to support their clinical judgement and decision making about care planning and delivery. METHODS: A realist process evaluation was undertaken in a large acute hospital trust using mixed methods incorporating organisational policy review, staff semi-structured, ethnographic observation of clinical care and patient record review. Approximately 75 h of ethnographic field work involving 72 patients, 15 patient record reviews and 16 staff interviews were undertaken on 4 wards. FINDINGS: Findings suggest PURPOSE-T assisted nurses differently depending on their level of experience. Those with less experience use it as an educational guide, while those with more experience made an initial clinical judgement and used PURPOSE-T as a safety net to ensure they hadn't missed anything. Nurses were concerned about demonstrating good documentation of assessment, care planning and delivery in order to underpin consistent communication about care and because they had an underlying fear of being blamed if things went wrong. There is an array of other contextual features that impact the planning and delivery of pressure area care that go beyond the use of PURPOSE-T alone, including systematic equipment provision, competing patient safety initiatives and rehabilitation requirements. CONCLUSION: The findings reinforce the assertion that PU-RAIs are complex interventions and could inform the development of a more integrated system of care which takes into account the contextual features associated with PU prevention in modern hospitals.

High-intensity interval training in patients with intermittent claudication.

OBJECTIVE: Provision, uptake, adherence, and completion rates for supervised exercise programs (SEP) for intermittent claudication (IC) are low. A shorter, more time-efficient, 6-week, high-intensity interval training (HIIT) program may be an effective alternative that is more acceptable to patients and easier to deliver. The aim of this study was to determine the feasibility of HIIT for patients with IC. METHODS: A single arm proof-of-concept study, performed in secondary care, recruiting patients with IC referred to usual-care SEPs. Supervised HIIT was performed three times per week for 6 weeks. The primary outcome was feasibility and tolerability. Potential efficacy and potential safety were considered, and an integrated qualitative study was undertaken to consider acceptability. RESULTS: A total of 280 patients were screened: 165 (59%) were eligible, and 40 (25%) were recruited. The majority (n = 31; 78%) of participants completed the HIIT program. The remaining nine patients were withdrawn or chose to withdraw. Completers attended 99% of training sessions, completed 85% of sessions in full, and performed 84% of completed intervals at the required intensity. There were no related serious adverse events. Maximum walking distance (+94 m; 95% confidence interval, 66.6-120.8 m) and the SF-36 physical component summary (+2.2; 95% confidence interval, 0.3-4.1) were improved following completion of the program. CONCLUSIONS: Uptake to HIIT was comparable to SEPs in patients with IC, but completion rates were higher. HIIT appears feasible, tolerable, and potentially safe and beneficial for patients with IC. It may provide a more readily deliverable, acceptable form of SEP. Research comparing HIIT with usual-care SEPs appears warranted.

Extracorporeal shockwave therapy compared with standard care for diabetic foot ulcer healing: An updated systematic review.

Emerging evidence suggests that extracorporeal shockwave therapy (ESWT) may improve time to DFU healing. The aim of this review was to appraise the evidence on role of ESWT in DFU healing and impact of different ESWT doses. Databases were searched for trials comparing ESWT plus standard care to standard care alone in participants with DFUs. Search results were reviewed by two independent reviewers. The Cochrane Risk of Bias 2 tool and GRADE approach was used to assess bias and certainty. The primary outcome was time to healing. The search identified 345 papers after duplicates removed. Six trials consisting of 471 participants were included. There was unclear or high risk of bias across all domains. Time to ulcer healing was probably shorter in patients treated with ESWT compared with standard ulcer care alone (GRADE: low certainty). Patients treated with ESWT were more likely to heal at 20 weeks post-ESWT compared with those treated with standard ulcer care alone (GRADE: low certainty). There was significant heterogeneity. ESWT remains a promising new treatment but the translation into routine clinical practice is still limited by the low certainty of evidence surrounding its effectiveness, case selection and optimum dose.

Through-knee versus above-knee amputation for vascular and non-vascular major lower limb amputations.

BACKGROUND: Diabetes and vascular disease are the leading causes of lower limb amputation. Currently, 463 million adults are living with diabetes, and 202 million with peripheral vascular disease, worldwide. When a lower limb amputation is considered, preservation of the knee in a below-knee amputation allows for superior functional recovery when compared with amputation at a higher level. When a below-knee amputation is not feasible, the most common alternative performed is an above-knee amputation. Another possible option, which is less commonly performed, is a through-knee amputation which may offer some potential functional benefits over an above-knee amputation. OBJECTIVES: To assess the effects of through-knee amputation compared to above-knee amputation on clinical and rehabilitation outcomes and complication rates for all patients undergoing vascular and non-vascular major lower limb amputation. SEARCH METHODS: The Cochrane Vascular Information Specialist searched the Cochrane Vascular Specialised Register, CENTRAL, MEDLINE, Embase, and CINAHL databases; the World Health Organization International Clinical Trials Registry Platform; and the ClinicalTrials.gov trials register to 17 February 2021. We undertook reference checking, citation searching, and contact with study authors to identify additional studies. SELECTION CRITERIA: Published and unpublished randomised controlled trials (RCTs) comparing through-knee amputation and above-knee amputation were eligible for inclusion in this study. Primary outcomes were uncomplicated primary wound healing and prosthetic limb fitting. Secondary outcomes included time taken to achieve independent mobility with a prosthesis, health-related quality of life, walking speed, pain, and 30-day survival. DATA COLLECTION AND ANALYSIS: Two review authors independently reviewed all records identified by the search. Data collection and extraction were planned in line with recommendations outlined in the Cochrane Handbook for Systematic Reviews of Interventions. We planned to assess the certainty of evidence using the GRADE approach. MAIN RESULTS: We did not identify RCTs that met the inclusion criteria for this review. AUTHORS' CONCLUSIONS: No RCTs have been conducted to determine comparative clinical or rehabilitation outcomes of through-knee amputation and above-knee amputation, or complication rates. It is unknown whether either of these approaches offers improved outcomes for patients. RCTs are needed to guide practice and to ensure the best outcomes for this patient group.

A mixed-method feasibility study of a novel transitional regime of incremental haemodialysis: study design and protocol.

BACKGROUND: Incremental haemodialysis/haemodiafiltration (HD) may help reduce early mortality rates in patients starting HD. This mixed-method feasibility study aims to test the acceptability, tolerance and safety of a novel incremental HD regime, and to study its impact on parameters of patient wellbeing. METHOD: We aim to enrol 20 patients who will commence HD twice-weekly with progressive increases in duration and frequency, achieving conventional treatment times over 15 weeks (incremental group). Participants will be followed-up for 6 months and will undergo regular tests including urine collections, bio-impedance analyses and quality-of-life questionnaires. Semi-structured interviews will be conducted to explore patients' prior expectations from HD, their motivations for participation and experiences of receiving incremental HD. For comparison of safety and indicators of dialysis adequacy, a cohort of 40 matched patients who previously received conventional HD will be constructed from local dialysis records (historical controls). RESULTS: Data will be recorded on the numbers screened and proportions consented and completing the study (primary outcome). Incremental and conventional groups will be compared in terms of differences in blood pressure control, interdialytic weight changes, indicators of dialysis adequacy and differences in adverse and serious adverse events. In analyses restricted to incremental group, measurements of RRF, fluid load and quality-of-life during follow-up will be compared with baseline values. From patient interviews, a narrative description of key themes along with anonymised quotes will be presented. CONCLUSION: Results from this study will address a significant knowledge gap in the prescription HD therapy and inform the development novel future therapy regimens.

The unique information and communication needs of men affected by prostate cancer: A qualitative study of men's experience.

OBJECTIVE: The objective of this study is to explore the specific information and communication needs of men affected by prostate cancer to inform the development of educational materials for clinicians. METHODS: This is a qualitative descriptive study. A purposive sampling strategy was used to identify men at different cancer stages and with experience of different treatment regimens. Semistructured interviews (25) were conducted with 19 men and six carers over the phone. Interview data were analysed using a framework approach. RESULTS: Four themes emerged: gaps in the information provided by secondary care doctors and nurses, communication skills needed in effective clinical information provision, a need for individualised information and alternative information sources used to meet unmet needs. Regardless of cancer stage and treatment, men with prostate cancer and their carers found information regarding common and burdensome adverse effects of prostate cancer treatment particularly lacking, and their ongoing and changing information needs often overlooked. They needed information delivered in a compassionate and individually tailored manner, considering content, timing and emotional support within the context of their unique life circumstances. CONCLUSION: Clinicians often fail to recognise the need for or deliver patient-centred conversations about treatment, managing side effects and prognosis. The findings will be used to develop clinician-facing educational materials.

The Development of a Multilevel Intervention to Optimise Participant Engagement with an Obesity Prevention Programme Delivered in UK children's Centres.

Poor participant engagement threatens the potential impact and cost-effectiveness of public health programmes preventing meaningful evaluation and wider application. Although barriers and levers to engagement with public health programmes are well documented, there is a lack of proven strategies in the literature addressing these. This paper details the development of a participant engagement intervention aimed at promoting enrolment and attendance to a community-based pre-school obesity prevention programme delivered in UK children's centres; HENRY (Health, Exercise, Nutrition for the Really Young). The Behaviour Change Wheel framework was used to guide the development of the intervention. The findings of a coinciding focused ethnography study identified barriers and levers to engagement with HENRY that informed which behaviours should be targeted within the intervention to promote engagement. A COM-B behavioural analysis was undertaken to identify whether capability, opportunity or motivation would need to be influenced for the target behaviours to occur. APEASE criteria were used to agree on appropriate intervention functions and behaviour change techniques. A multi-level participant engagement intervention was developed to promote adoption of target behaviours that were proposed to promote engagement with HENRY, e.g. ensuring the programme is accurately portrayed when approaching individuals to attend and providing 'taster' sessions prior to each programme. At the local authority level, the intervention aimed to increase buy-in with HENRY to increase the level of resource dedicated to engagement efforts. At the centre level, managers were encouraged to widen promotion of the programme and ensure that staff promoted the programme accurately. HENRY facilitators received training to increase engagement during sessions, and parents that had attended HENRY were encouraged to recruit their peers. This paper describes one of the first attempts to develop a theory-based multi-level participant engagement intervention specifically designed to promote recruitment and retention to a community-based obesity prevention programme. Given the challenges to implementing public health programmes with sufficient reach, the process used to develop the intervention serves as an example of how programmes that are already widely commissioned could be optimised to enable greater impact.

Searching for Programme theories for a realist evaluation: a case study comparing an academic database search and a simple Google search.

BACKGROUND: Realist methodologies are increasingly being used to evaluate complex interventions in health and social care. Programme theory (ideas and assumptions of how a particular intervention works) development is the first step in a realist evaluation or a realist synthesis, with literature reviews providing important evidence to support this. Deciding how to search for programme theories is challenging and there is limited guidance available. Using an example of identifying programme theories for a realist evaluation of Pressure Ulcer Risk Assessment Instruments in clinical practice, the authors explore and compare several different approaches to literature searching and highlight important methodological considerations for those embarking on a programme theory review. METHODS: We compared the performance of an academic database search with a simple Google search and developed an optimised search strategy for the identification primary references (i.e. documents providing the clearest examples of programme theories) associated with the use of Pressure Ulcer Risk Assessment Instruments (PU-RAIs). We identified the number of primary references and the total number of references retrieved per source. We then calculated the number needed to read (NNR) expressed as the total number of titles and abstracts screened to identify one relevant reference from each source. RESULTS: The academic database search (comprising CINAHL, The Cochrane Library, EMBASE, HMIC, Medline) identified 2 /10 primary references with a NNR of 1395.The Google search identified 7/10 primary references with a NNR of 10.1. The combined NNR was 286.3. The optimised search combining Google and CINAHL identified 10/10 primary references with a NNR of 40.2. CONCLUSION: The striking difference between the efficiency of the review's academic database and Google searches in finding relevant references prompted an in-depth comparison of the two types of search. The findings indicate the importance of including grey literature sources such as Google in this particular programme theory search, while acknowledging the need for transparency of methods. Further research is needed to facilitate improved guidance for programme theory searches to enhance practice in the realist field and to save researcher time and therefore resource.

Participant engagement with a UK community-based preschool childhood obesity prevention programme: a focused ethnography study.

BACKGROUND: Children's centres in the UK provide a setting for public health programmes; offering support to families living in the most disadvantaged areas where obesity prevalence is at its highest. Health, Exercise and Nutrition in the Really Young (HENRY) is an eight-week obesity prevention programme currently delivered in children's centres across the UK. However, low participant engagement in some local authorities threatens its potential reach and impact. This study aimed to explore the factors influencing participant engagement with HENRY to describe where local intervention may support engagement efforts. METHOD: A focused ethnography study was undertaken in five children's centres delivering HENRY across the UK. One hundred and ninety hours of field observations, 22 interviews with staff (commissioners, HENRY co-ordinators, managers and facilitators) and six focus groups (36 parents), took place over five consecutive days in each centre. The Consolidated Framework for Implementation Research (CFIR) was used to guide the observations and analysis of the data. RESULTS: Three overarching themes described the factors influencing participant engagement with HENRY: local authority decision making around children's centre programmes; children's centre implementation of HENRY; and the participant experience of HENRY. The results indicate that factors influencing participant engagement with public health programmes begin at the commissioning body level, influencing children's centre implementation and subsequently the experience of participants. Local authority funding priorities and constraints influence availability of places and who these places are offered to, with funding often targeted towards those deemed most at need. This was perceived to have a detrimental effect on participant experience of the programme. CONCLUSION: In summary, participant engagement is affected by multiple factors, working at different levels of the children's centre and local authority hierarchy, most of which are at play even before participants decide whether or not they choose to enrol and maintain attendance. For programmes to achieve their optimal reach and impact, factors at the commissioning and local implementation level need to be addressed prior to addressing participant facing issues.

TIGA-CUB-manualised psychoanalytic child psychotherapy versus treatment as usual for children aged 5-11 with treatment-resistant conduct disorders and their primary carers: results from a randomised controlled feasibility trial.

BACKGROUND: Parenting programmes are recommended for conduct disorders in 5-11 year olds, but ineffective for 25-33%. A feasibility trial was needed to determine whether a confirmatory trial of second-line, manualised short-term psychoanalytic child psychotherapy (mPCP) versus treatment as usual (TaU) is practicable. METHOD: This was a two-arm, pragmatic, parallel-group, multi-centre, individually-randomised controlled feasibility trial with blinded outcome assessment. Child-primary carer dyads were recruited from National Health Service Child and Adolescent Mental Health Services and mPCP delivered by routine child psychotherapists. RESULTS: Thirty-two dyads (50% of eligible, 95% CI 37 to 63%) were recruited, with 16 randomised to each arm. Eleven (69%) completed ≥50% of 12 week mPCP and 13 (81%) . Follow-up was obtained for 24 (75%) at 4 months and 14/16 (88%) at 8 months. Teacher follow-up was 16 (50%) ≥1 session. Manual adherence was good. Baseline candidate primary outcomes were 37.4 (SD 11.4) and 18.1 (SD 15.7) on the Child Behaviour Checklist/Teacher Report Form externalising scale and 102.8 (SD 28.4) and 58.8 (SD 38.9) on the total score. Health economics data collection was feasible and the trial acceptable to participants. CONCLUSION: Recruitment, teacher follow-up and the manual need some refinement. A confirmatory trial is feasible, subject to funding of research child psychotherapists.

Supporting public involvement in research design and grant development: a case study of a public involvement award scheme managed by a National Institute for Health Research (NIHR) Research Design Service (RDS).

BACKGROUND: It is good practice for the public to be involved in developing health research. Resources should be available for researchers to fund the involvement of the public in the development of their grants. OBJECTIVE: To describe a funding award scheme to support public involvement in grant development, managed by an NIHR Research Design Service (RDS). Case examples of how the award contributed to successful grant applications and findings from a recent evaluation of the scheme are presented. DESIGN: A case study of resource provision to support public involvement activities in one region of England. PARTICIPANTS: University and NHS-based researchers, and members of the public. FINDINGS: Between 2009 and 2012, the RDS approved 45 public involvement funding awards (totalling nearly £19,000). These awards contributed to 27 submitted applications at the time of writing, of which 11 were successful (totalling over £7.5 million). The evaluation revealed difficulties encountered by some researchers when involving the public in grant development, which led to suggestions about how the scheme could be improved. CONCLUSION: This award scheme represents an efficient method of providing researchers with resources to involve the public in grant development and would appear to represent good value for money.

Diagnosis, medication, and surgical management for patients with trigeminal neuralgia: a qualitative study.

BACKGROUND: Trigeminal neuralgia (TN) is a serious health problem, causing brief, recurrent episodes of stabbing or burning facial pain, which patients describe as feeling like an electric shock. The consequences of living with the condition are severe. There is currently no cure for TN and management of the condition can be complex, often delayed by misdiagnosis. Patients' qualitative experiential accounts of TN have not been reported in the literature. Capturing subjective experiences can be used to inform the impact of the condition on quality of life and may contribute to a better understanding of current clinical practice with the aim of improving patient care. METHODS: Participants with TN (n = 16; 11 female), including those who have and have not undergone surgical intervention(s), took part in one of four focus groups. We conducted a thematic analysis within an essentialist framework using transcripts. RESULTS: The impact of TN and treatment on the lives of participants emerged as four predominant themes: (1) diagnosis and support with TN, (2) living in fear of TN pain, (3) isolation and social withdrawal, and (4) medication burden and looking for a cure. Each theme is discussed and illustrated with extracts from the transcripts. CONCLUSIONS: Key issues to address in the management of patients with TN include continued delays in diagnosis, persistent side effects from medication, and a lack of psychological support. Developing strategies to enhance the management of patients with TN, informed by a biopsychosocial approach and multidisciplinary team working, is essential to enhancing the provision of current care.

Measuring patient-perceived continuity of care for patients with long-term conditions in primary care.

BACKGROUND: Continuity of care is widely acknowledged as important for patients with multi-morbidity but simple, service-orientated indices cannot capture the full impact of continuity in complex care delivery systems. The patient's perspective is important to assess outcomes fully and this is challenging because generic measures of patient-perceived continuity are lacking. We investigate the Chao Perception of Continuity (Chao PC) scale to determine its suitability as a measure of continuity of care for patients with a long-term condition (stroke), and co-morbidity, in a primary care setting. DESIGN AND SETTING: A questionnaire study embedded in a prospective observational cohort study of outcomes for patients following acute stroke. PARTICIPANTS: 168 community dwelling patients (58% male) mean age 68 years a minimum one year post-stroke. Functional status: Barthel Index mean =16. INTERVENTION: A 23-item questionnaire, the Chao Perception of Continuity (Chao PC) scale, sent by post to their place of residence or administered face to face as part of the final cohort study assessment. RESULTS: 310 patients were invited to participate; 168 (54%) completed a questionnaire. All 23 questionnaire items were entered into a Principal Component Analysis. Emergent factors from the exploratory analysis were (1) inter-personal trust (relational continuity); (2) interpersonal knowledge and information (informational and relational continuity) and (3) the process of care (managerial continuity). The strongest of these was inter-personal trust. CONCLUSION: The context-specific items in the Chao PC scale are difficult for respondents to interpret in a United Kingdom Primary Care setting resulting in missing data and low response rates. The Chao-PC therefore cannot be recommended for wider application as a general measure of continuity of care without significant modification. Our findings reflect the acknowledged dimensions of continuity and support the concept of continuity of care as a multi-dimensional construct. We demonstrate the overlapping boundaries across the dimensions in the factor structure derived. Trust and interpersonal knowledge are clearly identified as valuable components of any patient-perceived measure of continuity of care.

"What influences how well householders living in previously flooded communities feel they are protected or could recover from future flooding?: Results of a survey".

In England, the Environment Agency (EA) estimates that over 3 million properties in England are at risk of surface water flooding. Heavy and prolonged rainfall that drives surface water flooding is projected to increase in the future due to climate change. This paper presents a quantitative secondary analysis of a cross-sectional household flood survey in a disadvantaged city in England heavily impacted by surface water flooding in 2007 and at severe risk of flooding in the future. The aim of this study was to examine how previous experience of flooding, demographic factors, and behaviours impact on feelings of protection against flooding and perceived ability to recover from flooding. Survey data were collected from residents in Hull in northern England in 2018, in areas impacted by major floods in 2007 when over 8,600 households were flooded. Valid responses were received from 453 households, of whom 37.3% were flooded or flooding damaged their house (n = 169), 14.6% had been disrupted by flooding (n = 66), 9.3% had been exposed to flooding (n = 42) and 176 (38.9%) had not experienced flooding. Over 22% felt they had very low protection against flooding, and over 25% would make a very slow recovery if they were flooded. Associations were found between gender and both low levels of protection against flooding. Females were less likely to feel confident in their recovery from flooding than males (OR 0.551). The findings support a need to focus on women's perceptions of flood vulnerability and capacity to cope and recover from flooding in flood and disaster management policy and practice, including providing effective support before, during and after flooding.

Patient influence on general practice service improvement decision making: a participatory research mixed-methods intervention study.

BACKGROUND: Health policy promotes patient participation in decision making about service organisation. In English general practice this happens through contractually required patient participation groups (PPGs). However, there are problems with the enactment of PPGs that have not been systematically addressed. AIM: To observe how a co-designed theory-informed intervention can increase representational legitimacy and facilitate power sharing to support PPGs to influence decision making about general practice service improvement. DESIGN AND SETTING: Participatory action research to implement the intervention in two general practices in the North of England was undertaken. The intervention combined two different participatory practices: partnership working involving externally facilitated meetings with PPG members and staff; and consultation with the wider patient population using a bespoke discrete choice experiment (DCE). METHOD: To illustrate decision making in PPGs, qualitative data are presented from participant observation notes and photographed visual data generated through participatory methods. The DCE results are summarised to illustrate how wider population priorities contributed to overall decision making. Observational data were thematically analysed using normalisation process theory with support from a multi-stakeholder co-research group. RESULTS: In both general practices, patients influenced decision making during PPG meetings and through the DCE, resulting in bespoke patient-centred action plans for service improvement. Power asymmetries were addressed through participatory methods, clarification of PPG roles in decision making, and addressing representational legitimacy through wider survey consultation. CONCLUSION: Combining participatory practices and facilitated participatory methods enabled patients to influence decision making about general practice service improvement. The policy of mandatory PPGs needs updating to recognise the need to resource participation in a meaningful way.

Embedding new technology into clinical ultrasound practice: Is role extension for sonographers the key to improving patient pathways?

Introduction: MicroUS is a new imaging technique that may have potential to reliably monitor prostate disease and therefore release capacity in MRI departments. Firstly, however, it is essential to identify which healthcare staff may be suitable to learn to use this modality. Based on previous evidence, UK sonographers may be well placed to harness this resource. Topic: Currently, there is sparse evidence on the performance of MicroUS for monitoring prostate disease but early findings are encouraging. Although its uptake is increasing, it is believed that only two sites in the UK have MicroUS systems and only one of those uses just sonographers to undertake and interpret this new imaging technique. Discussion: UK sonographers have a history of role extension dating back several decades and have proven repeatedly that they are reliable and accurate when measured against a gold standard. We explore the background of UK sonographer role extension and postulate that sonographers are best placed to adopt and embed new imaging techniques and technology into routine clinical practice. This is of particular importance given the dearth of ultrasound focussed radiologists in the UK. To effectively introduce challenging new work streams, multi-professional collaboration in imaging, alongside sonographer role extension, will ensure precious resources are maximised thus ensuring optimum patient care. Conclusion: UK sonographers have repeatedly demonstrated reliability in many areas of role extension in various clinical settings. Early data indicate that the adoption of MicroUS for use in prostate disease surveillance may be another role suited to sonographers.