How do people with multiple sclerosis experience prognostic uncertainty and prognosis communication? A qualitative study

Background: Disease progression in multiple sclerosis (MS) is highly variable and predicting prognosis is notoriously challenging. Patients’ prognosis beliefs, responses to prognostic uncertainty and experiences of prognosis-related communication with healthcare professionals (HCPs) have received little study. These issues have implications for patients’ psychological adjustment and are important in the context of the recent development of personalised prognosis forecasting tools. This study explored patient perspectives on the experience of prognostic uncertainty, the formation of expectations about personal prognosis and the nature of received and desired prognosis communication. Methods: 15 MS patients participated in in-depth semi-structured interviews which were analysed using inductive thematic analysis. Results: Six themes captured key aspects of the data: Experiencing unsatisfactory communication with HCPs, Appreciating and accepting prognostic uncertainty, Trying to stay present-focused, Forming and editing personal prognosis beliefs, Ambivalence towards forecasting the future, and Prognosis information delivery. MS patients report having minimal communication with HCPs about prognosis. Over time MS patients appear to develop expectations about their disease trajectories, but do so with minimal HCP input. Provision of prognosis information by HCPs seems to run counter to patients’ attempts to remain present-focused. Patients are often ambivalent about prognosis forecasting and consider it emotionally dangerous and of circumscribed usefulness.Conclusions: HCPs must carefully consider whether, when and how to share prognosis information with patients; specific training may be beneficial. Future research should confirm findings about limited HCP-patient communication, distinguish predictors of patients’ attitudes towards prognostication and identify circumstances under which prognostic forecasting benefits patients. <br/

XLIX. Discours

BackgroundAn online weight management intervention (POWeR+) combined with a small amount of primary care healthcare practitioner support is effective in helping patients to lose weight, but little is known about how practitioners interact with the POWeR+ intervention or their experiences of providing support for patients using POWeR+. The aim of this study was to explore practitioners’ usage of POWeR+ and their experiences of providing support to patients using POWeR+. MethodsSet within a randomised controlled trial of POWeR+, practitioners’ usage of POWeR+ was automatically captured and a qualitative process analysis was conducted employing semi-structured telephone interviews with practitioners who provided support to patients using POWeR+. The usage analysis captured how 54 practitioners used the POWeR+ intervention. Thirteen telephone interviews explored practitioners’ experiences of using POWeR+ and providing patients with face-to-face or remote (email and telephone) support. Interview data were analysed using inductive thematic analysis. ResultsUsage analysis indicated that almost all practitioners engaged with POWeR+. Pages which displayed patients’ progress and allowed practitioners to email patients were used the most. Practitioners found POWeR+ straightforward and easy to use. Some practitioners preferred providing support face-to-face, which they enjoyed more than remote support. A small number of nurses found providing non-directive support using the CARe approach (Congratulate, Ask, Remind) challenging, feeling it was the opposite of their normal approach. POWeR+ enabled practitioners to raise the topic of weight loss with patients, and POWeR+ was viewed as a superior alternative to existing weight management support which was limited in most practices. Still some practitioners found it difficult to fit providing support into their busy schedules. ConclusionsOverall, practitioners engaged well with POWeR+ and perceived providing patients with support whilst using POWeR+ as acceptable and feasible. CARe provides a potentially useful model for how practitioners can combine human and digital support in a cost-effective way, which could be useful for the management of other conditions. Some potential barriers to implementation were identified, which allowed modification of POWeR+. The findings suggest that implementing this cost-effective online weight management intervention in Primary Care would be feasible and acceptable to practitioners.</p

Exploring weight loss services in primary care and staff views on using a web-based programme

Although primary care staff felt they should deliver weight loss services, low levels of faith in the efficacy of current treatments resulted in provision of under-resourced and 'ad hoc' services. Integration of a web-based weight loss programme that promotes service evaluation and provides a cost-effective option for supporting patients may encourage practices to invest more in weight management service

Development of the digital assessment of precise physical activity (DAPPA) tool for older adults

Physical activity (PA) is central to maintaining health and wellbeing as we age. Valid, reliable measurement tools are vital for understanding, and evaluating PA. There are limited options for comprehensively, accurately and affordably measuring older adults’ PA at scale at present. We aimed to develop a digital PA measurement tool specifically for adults aged 65+ using a person-based approach. We collated evidence from target users, field experts and the relevant literature to learn how older adults comprehend PA and would accept a digital tool. Findings suggest that older adults’ PA is often integrated into their daily life activities and that commonly applied terminology (e.g., moderate and vigorous) can be difficult to interpret. We also found that there is increasing familiarity with digital platforms amongst older adults, and that technological simplicity is valued. These findings informed the development of a digital tool that asks users to report their activities across key PA domains and dimensions from the previous 7-days. Users found the tool easy to navigate and comprehensive in terms of activity reporting. However, real-world usability testing revealed that users struggled with seven-day recall. Further work will address the identified issues, including creating a single-day reporting option, before commencing work to validate this new tool

Exploring maintenance of physical activity behaviour change among people living with and beyond gastrointestinal cancer: a cross-sectional qualitative study and typology.

OBJECTIVES: In the last decade, there has been a rapid expansion of physical activity (PA) promotion programmes and interventions targeting people living with and beyond cancer (LWBC). The impact that these initiatives have on long-term maintenance of PA remains under-researched. This study sought to explore the experiences of participants in order to characterise those who have and have not successfully sustained increases in PA following participation in a PA intervention after a diagnosis of gastrointestinal (GI) cancer, and identify barriers and facilitators of this behaviour. DESIGN: Cross-sectional qualitative study. Semi-structured interviews with participants who had previously taken part in a PA programme in the UK, explored current and past PA behaviour and factors that promoted or inhibited regular PA participation. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. Themes and subthemes were identified. Differences between individuals were recognised and a typology of PA engagement was developed. PARTICIPANTS: Twenty-seven individuals (n=15 male, mean age=66.3 years) with a diagnosis of GI cancer who had participated in one of four interventions designed to encourage PA participation. SETTING: UK. RESULTS: Seven themes were identified: disease processes, the role of ageing, emotion and psychological well-being, incorporating PA into everyday life, social interaction, support and self-monitoring and competing demands. A typology with three types describing long-term PA engagement was generated: (1) maintained PA, (2) intermittent PA, (3) low activity. Findings indicate that identifying an enjoyable activity that is appropriate to an individual's level of physical functioning and is highly valued is key to supporting long-term PA engagement. CONCLUSION: The typology described here can be used to guide stratified and personalised intervention development and support sustained PA engagement by people LWBC

A study of the efficacy and cost-effectiveness of MRSA screening and monitoring on surgical wards using a new, rapid molecular test (EMMS)

<p>Abstract</p> <p>Background</p> <p>MRSA is a significant contributor to prolonged hospital stay, poor clinical outcome and increased healthcare costs amongst surgical patients. A PCR test has been developed for rapid detection of MRSA in nasal swabs. The aims of this study are (1) to estimate the effectiveness of screening using this rapid PCR tests vs culture in reducing MRSA cross-infection rates; (2) to compare the cost of each testing strategy, including subsequent health care costs; and (3) to model different policies for the early identification and control of MRSA infection in surgical patients.</p> <p>Methods/Design</p> <p>The study is a prospective two-period cross-over study set in 7 surgical wards covering different surgical specialities. A total of 10,000 patients > 18 years will be tested over 16 months. The only difference between the two study periods is the method used for the detection of MRSA in each ward (rapid v conventional culture), with all other infection control practices remaining consistent between the arms. The study has been designed to complement routine practice in the NHS. Outcomes are MRSA cross-infection rates (primary outcome) and need for antibiotic therapy and MRSA-related morbidity. Parallel economic and modelling studies are being conducted to aid in the interpretation of the results and to evaluate the cost-effectiveness of the rapid PCR screening strategy.</p> <p>Discussion</p> <p>This paper highlights the design, methods and operational aspects of a study evaluating rapid MRSA screening in the surgical ward setting.</p

“A Switch Went off in my Whole Body”: Lived Experiences of Fatigue and Post-Exertional Malaise in Long Covid

The growing HCI agenda on health has focused on different chronic conditions but less so on Long Covid, despite its severe impact on the quality of life. We report findings from 2 workshops with 13 people living with Long Covid, indicating the challenges of making sense of their physical, cognitive, and emotional symptoms, and of monitoring the triggers of post-exertional malaise. While most participants engage in pacing activities for the self-management of fatigue, only a few are aware of the importance of planning all their daily activities and routines in order to avoid post-exertional malaise. We conclude with design implications to support lightweight tracking and sensemaking of fatigue symptoms, novel data analytics for monitoring the triggers of post-exertional malaise and the worsening of symptoms, and support for self-management in order to prevent post-exertional malaise

Randomised controlled feasibility trial of a web-based weight management intervention with nurse support for obese patients in primary care

&lt;b&gt;Background&lt;/b&gt;&lt;p&gt;&lt;/p&gt; There is a need for cost-effective weight management interventions that primary care can deliver to reduce the morbidity caused by obesity. Automated web-based interventions might provide a solution, but evidence suggests that they may be ineffective without additional human support. The main aim of this study was to carry out a feasibility trial of a web-based weight management intervention in primary care, comparing different levels of nurse support, to determine the optimal combination of web-based and personal support to be tested in a full trial.&lt;p&gt;&lt;/p&gt; &lt;b&gt;Methods&lt;/b&gt;&lt;p&gt;&lt;/p&gt; This was an individually randomised four arm parallel non-blinded trial, recruiting obese patients in primary care. Following online registration, patients were randomly allocated by the automated intervention to either usual care, the web-based intervention only, or the web-based intervention with either basic nurse support (3 sessions in 3 months) or regular nurse support (7 sessions in 6 months). The main outcome measure (intended as the primary outcome for the main trial) was weight loss in kg at 12 months. As this was a feasibility trial no statistical analyses were carried out, but we present means, confidence intervals and effect sizes for weight loss in each group, uptake and retention, and completion of intervention components and outcome measures.&lt;p&gt;&lt;/p&gt; &lt;b&gt;Results&lt;/b&gt;&lt;p&gt;&lt;/p&gt; All randomised patients were included in the weight loss analyses (using Last Observation Carried Forward). At 12 months mean weight loss was: usual care group (n = 43) 2.44 kg; web-based only group (n = 45) 2.30 kg; basic nurse support group (n = 44) 4.31 kg; regular nurse support group (n = 47) 2.50 kg. Intervention effect sizes compared with usual care were: d = 0.01 web-based; d = 0.34 basic nurse support; d = 0.02 regular nurse support. Two practices deviated from protocol by providing considerable weight management support to their usual care patients.&lt;p&gt;&lt;/p&gt; &lt;b&gt;Conclusions&lt;/b&gt;&lt;p&gt;&lt;/p&gt; This study demonstrated the feasibility of delivering a web-based weight management intervention supported by practice nurses in primary care, and suggests that the combination of the web-based intervention with basic nurse support could provide an effective solution to weight management support in a primary care context

The timing of hypertonic saline (HTS) and airway clearance techniques (ACT) in adults with Cystic Fibrosis (CF) during pulmonary exacerbation: Pilot data form a randomised crossover study.

BACKGROUND: Streamlining the timing of treatments in cystic fibrosis (CF) is important to optimise adherence while ensuring efficacy. The optimal timing of treatment with hypertonic saline (HTS) and airway clearance techniques (ACT) is unknown. OBJECTIVES: This study hypothesised that HTS before ACT would be more effective than HTS during ACT as measured by Lung Clearance Index (LCI). METHODS: Adults with CF providing written informed consent were randomised to a crossover trial of HTS before ACT or HTS during ACT on consecutive days. ACT treatment consisted of Acapella Duet. Patients completed LCI and spirometry at baseline and 90 min post treatment. Mean difference (MD) and 95% CIs were reported. RESULTS: 13 subjects completed the study (mean (SD) age 33 (12) years, forced expiratory volume in 1second % (FEV1%) predicted 51% (22), LCI (no. turnovers) 14 (4)). Comparing the two treatments (HTS before ACT vs HTS during ACT), the change from baseline to 90 min post treatment in LCI (MD (95% CI) -0.02 (-0.63 to 0.59)) and FEV1% predicted (MD (95% CI) -0.25 (-2.50 to 1.99)) was not significant. There was no difference in sputum weight (MD (95% CI) -3.0 (-14.9 to 8.9)), patient perceived ease of clearance (MD (95% CI) 0.4 (-0.6 to 1.3) or satisfaction (MD (95% CI) 0.4 (-0.6 to 1.5)). The time taken for HTS during ACT was significantly shorter (MD (95% CI) 14.7 (9.8 to 19.6)). CONCLUSIONS: In this pilot study, HTS before ACT was no more effective than HTS during ACT as measured by LCI. TRIAL REGISTRATION NUMBER: NCT01753869; Pre-results