Students' and tutors' experiences of remote 'student-patient' consultations.

BACKGROUND: Remote consulting has become part of the medical student clinical experience in primary care, but little research exists regarding the impact on learning. AIM: To describe the experiences of General Practitioner (GP) educators and medical students in using student-led remote consultations as an educational tool. METHOD: A qualitative, explorative study conducted at four UK medical schools. GP educators and medical students were purposively sampled and interviewed. RESULTS: Nine themes arose: practical application, autonomy, heuristics, safety, triage of undifferentiated patients, clinical reasoning, patient inclusion in student education, student-patient interaction, and student-doctor interaction. DISCUSSION: Remote consulting has become part of the clinical placement experience. This has been found to expose students to a wider variety of clinical presentations. Verbal communication, history-taking, triage, and clinical reasoning skills were practised through remote consulting, but examination skills development was lacking. Students found building rapport more challenging, although this was mitigated by having more time with patients. Greater clinical risk was perceived in remote consulting, which had potential to negatively impact students' psychological safety. Frequent debriefs could ameliorate this risk and positively impact student-doctor relationships. Student autonomy and independence increased due to greater participation and responsibility. Pre-selection of patients could be helpful but had potential to expose students to lower complexity patients.[Box: see text].

Digital undergraduate medical education and patient and carer involvement: a rapid systematic review of current practice.

BACKGROUND: Involving patients and carers in medical students' learning aims to centralise the perspective of healthcare users and supports our future medical workforce in the development of key skills. Medical schools are increasingly using digital technology for teaching and it is timely to understand how to maintain patient and carer involvement in this context. METHODS: Ovid MEDLINE, Ovid EMBASE and medRxiv were searched in October 2020 and reference lists of key articles were hand searched. Eligible studies reported authentic patient or carer involvement in undergraduate medical education where technology was also used. Study quality was assessed by the Mixed Methods Appraisal Tool (MMAT). Levels of patient or carer involvement were assessed using Towle et al.'s (2010) taxonomy, from Level 1 (lowest level) to Level 6 (highest level). RESULTS: Twenty studies were included in this systematic review. In 70% of studies, patients and carers featured in video or web-based case scenarios with no interaction between healthcare users and students. The remaining 30% of studies reported real-time interactions between students and patients via remote clinical encounters. Digital teaching sessions involving patients or carers were perceived to be valuable by students and educators, and increased student engagement, patient-centred attitudes, clinical knowledge, and communication skills. No studies reported the perspective of patients or carers. DISCUSSION: Digital technology has not yet driven higher levels of patient and carer involvement in medical training. "Live" interactions between students and patients are becoming more common but challenges need addressing to ensure positive experiences for all involved. Future teaching should enhance the role of patients and carers in medical education and support them to overcome any potential barriers to doing so remotely.

A patient-initiated treatment model for blepharospasm and hemifacial spasm: a randomized controlled trial.

BACKGROUND: To test, in a two-arm, single center, superiority, randomized controlled trial, the effectiveness of and costs associated with a patient-initiated treatment model for people with hemifacial spasm (HFS) and blepharospasm (BEB) in comparison to usual care. METHODS: One hundred and thirty patients with HFS or BEB, aged 18 years or over, were recruited from a nurse-led botulinum toxin type A clinic at an eye hospital in the United Kingdom (UK), completed baseline measures and were randomized (1:1). The intervention group determined their own botulinum toxin type A (BoNT/A) treatment schedule during the trial period (9 months) and received an information leaflet with a "hotline" number to book an appointment. Usual care appointments were scheduled by treating clinicians. Data analysts were blind to study group. The primary outcomes were disease severity and functional disability, as measured by the Jankovic Rating Scale and Blepharospasm Disability Index, respectively. Secondary outcomes included quality of life, anxiety and depression, satisfaction with care, confidence in the service, economic costs and employment days lost. RESULTS: Sixty-five patients were randomized to each group. The intervention demonstrated no statistically significant difference to usual care for any of primary outcomes. On secondary outcomes the levels of anxiety differed significantly (F2, 142.39 = 1.65, p = 0.02), with the intervention arm exhibiting a decrease and the control arm an increase (Hedges' g = - 0.26 [99% CI -0.83, 0.32]). No other statistically significant differences were found for secondary outcomes. Overall healthcare costs and costs to the patient were on average £198.95 less (95% CI -£256.76, £654.67; p = 0.10) per participant for those in the intervention compared to usual care, although this finding was not significant. CONCLUSIONS: We did not observe differences between the patient-initiated treatment model and usual care for people with BEB or HFS, on any primary outcome measure, quality of life, or depression. The patient-initiated treatment model may, however, have the potential to save healthcare costs and reduce anxiety. Patients using this new model were also equally as satisfied in the service and confident in their care as those receiving treatment as usual. TRIAL REGISTRATION: Clinicaltrials.gov ID NCT02577224 , 16th October 2015.

Which factors impact on quality of life for adults with blepharospasm and hemifacial spasm?

Purpose: Benign essential blepharospasm (BEB) and hemifacial spasm (HFS) are debilitating conditions causing spasms to the eyes and/or face and can significantly impact on quality of life (QoL). Initial research has highlighted potential factors impacting on QoL in BEB, but there remains a wealth of demographic, clinical, and psychosocial factors that may contribute to QoL but have not received attention. Methods: Cross-sectional baseline data were collected before a single-masked randomised controlled trial from 130 adults with BEB and HFS recruited from botulinum toxin clinics at Moorfields Eye Hospital, London. QoL was measured using the 24-item Craniocervical Dystonia Questionnaire (CDQ24), which provides a total score and five subscale scores relating to Stigma, Emotional state, Pain, Activities of daily living (ADL), and Social/family life. Treating clinicians provided clinical data. Hierarchical multiple regressions were performed on this baseline data to identify significant predictors of QoL. Results: ADL and Stigma were the areas most impacted upon whilst patients experienced better adjustment in relation to Pain, Social/family life, and Emotional state. CDQ24 Total scores were explained by the model (80% variance) and were significantly associated with appearance concerns, emotional representations, perceived negative consequences of the condition, mood, and dose of botulinum toxin. Conclusions: Patients with BEB and HFS report a detrimental impact on ADL and perceived stigma in relation to their condition. Predominantly, individual perceptions and mood are associated with QoL in this population, rather than demographic and clinical factors, signifying areas to target in the design of future healthcare services or interventions.

The first UK national blepharospasm patient and public involvement day; identifying priorities.

PURPOSE: We describe the planning and outcomes of the first 'Blepharospasm Day' in the UK. Blepharospasm is a distressing condition for patients and carers. Our 'patient and public involvement' event aimed to: cultivate a more informed patient group via active dialogue, help clinicians more effectively prioritise research and to facilitate peer-to-peer support for affected patients and public. DESIGN: A national one-day event was organised by the oculoplastics department at Moorfields Eye Hospital. The event was divided into informative lectures delivered by professionals and a patient panel, during which patients shared their experiences and expectations. METHODS: Data were collected from a variety of sources including: an interactive voting "LiveWall" poster, a pre-event questionnaire; "living with Blepharospasm", transcripts from patient panel discussions; and a feedback questionnaire. RESULTS: The event was well-received with 100% of respondents rating it good or excellent. Four research themes were identified: "aetiology", "alternative treatments", "faster, more accurate diagnosis", and "symptom control". Delegates' self-reported knowledge of blepharospasm increased significantly after the event. Limitations of the BdSI severity-assessment tool were noted with 22% of respondents failing to utilise it appropriately. CONCLUSION: Through our innovative "Blepharospasm Day", patient's priorities for research were identified, delegates understanding of blepharospasm increased and an independent blepharospasm patients-representatives' group was established; a first in the UK. Furthermore, short-fallings identified in the BdSI tool highlight the need for better severity-assessment tools. We demonstrate the benefits of the 'patient and public involvement' approach in the management of complex conditions such as blepharospasm. ABBREVIATIONS: PPI: Patient and public involvement; SLV-PSP: sight loss and vision sector - priority setting partnership; BRC: Biomedical Research Centre; NIHR: National Institute for Health Research; BsDI: Blepharospasm Disability Index.

Patients' expectations for the functional and psychosocial outcomes of orbital decompression surgery for thyroid eye disease: a qualitative study.

Patients with appearance-altering conditions may be dissatisfied with the outcomes of reconstructive surgery due to unmet expectations. This study explored patients' expectations of orbital decompression surgery for thyroid eye disease (TED) and whether these were met. Semi-structured interviews were conducted at two times: (1) in the weeks after patients were listed for decompression surgery and before surgery; (2) up to 12 months after surgery. Thematic analysis was performed for each time point, to identify themes within the data. Fourteen adults with TED were interviewed prior to surgery and five were followed up after surgery. Thematic analyses found: (1) Prior to surgery, patients had formed expectations through online information about the procedure, consultations with physicians, the impact TED had on their lives, and speaking to relevant others. Patients had specific expectations about the procedure, the recovery, post-operative appearance and post-operative vision. (2) After surgery, patients generally felt their appearance and well-being had improved. However, dissatisfaction was linked to unanticipated specific aspects of surgical care, recovery, or appearance. Dissatisfaction can arise from unmet expectations for the outcomes of reconstructive surgery. Physicians should be aware of the processes by which patients form expectations, for example different types and quality of online information. Ensuring that preoperative expectations are realistic could enhance satisfaction after surgery.

The Psychosocial and Clinical Outcomes of Orbital Decompression Surgery for Thyroid Eye Disease and Predictors of Change in Quality of Life.

PURPOSE: Thyroid eye disease (TED) has been found to reduce quality of life for many patients because of changes in their appearance and vision, although some seem to adjust better than others. This study was designed to investigate whether a patient's quality of life changes after having orbital decompression for improvement of appearance, vision, or both, and whether any demographic, clinical, or psychosocial factors can predict which patients might benefit from this surgery. DESIGN: This study used a within-subjects repeated-measures design, in which patients were assessed before and at 6 weeks and 6 months after surgery. PARTICIPANTS: A total of 123 adults (aged >18 years) with TED and undergoing orbital decompression surgery were recruited at Moorfields Eye Hospital. METHODS: Participants received lateral wall, medial wall, 2.5 wall, or 3 wall decompression and were followed up after surgery with a range of psychosocial and clinical assessments. MAIN OUTCOME MEASURES: The Graves' Ophthalmopathy Quality of Life (GO-QOL) scale was completed at each time point, and this was used as the dependent variable in each hierarchical multiple regression model. RESULTS: Significant improvements were found in all clinical characteristics after orbital decompression and in most psychosocial variables. The GO-QOL visual function scores did not change significantly until 6 months after surgery. In contrast, GO-QOL appearance scores changed significantly by 6 weeks after surgery and continued to increase to 6 months, reaching a minimal clinically important difference for this scale. None of the changes in clinical or psychosocial outcomes significantly predicted change in GO-QOL visual function. However, the hierarchical regression model explained 79% of the variance in change in GO-QOL appearance, with change in subjective evaluation of appearance being the only unique predictor of change in appearance-related quality of life. CONCLUSIONS: This study highlights the importance of appearance-related cognitions in predicting quality of life outcomes after surgery. Implications for clinical practice need to be considered in light of the limitations of this study, but it is suggested that psychosocial interventions targeting appearance-related cognitive processes, in particular personal evaluation of appearance, could enhance the quality of life outcomes for patients with TED undergoing orbital decompression surgery.

Does prospective acceptability of an intervention influence refusal to participate in a randomised controlled trial? An interview study.

BACKGROUND: The generalizability of findings of Randomised Controlled Trials (RCTs) is undermined by low or biased recruitment. Reasons for participant refusal are infrequently reported in published literature. AIMS: To apply the Theoretical Framework of Acceptability (TFA) to: (1) explore patient-reported reasons for declining to participate in a RCT comparing a new service model (patient-initiated appointments) with standard care (appointments scheduled by clinician) for managing blepharospasm and hemifacial spasm; (2) to explore associations between decliners' perceptions of acceptability and non-participation. METHOD: Eligible patients (n = 242) were approached to participate in the trial. Phase 1: decliners provided a brief reason for refusal. Reasons were analysed descriptively and reviewed against TFA constructs. PHASE 2: Consecutive decliners participated in short semi-structured interviews, to explore their reasons for refusal in more depth. Interviews were transcribed and analysed, with the TFA as a coding framework. RESULTS: Eighty-seven (36%) eligible patients refused trial participation; all provided a reason. From interviews with 15 decliners (17%), four key beliefs about acceptability were identified: happy with standard care (n = 41) (49%), anticipated burden of patient-initiated service, lack of confidence in ability to engage with new service and uncertainties about effectiveness of new service. Two themes reflected non-TFA factors: trial participation a low priority and burden of completing trial documentation. CONCLUSION: Reasons for refusal trial participation included: (a) reasons directly associated with intervention acceptability, and (b) reasons associated with trial participation more broadly. The TFA facilitated identification of problematic aspects of the new appointment booking system which could be addressed to enhance acceptability.

A Rapid Systematic Review of Public Responses to Health Messages Encouraging Vaccination against Infectious Diseases in a Pandemic or Epidemic.

Public health teams need to understand how the public responds to vaccination messages in a pandemic or epidemic to inform successful campaigns encouraging the uptake of new vaccines as they become available. A rapid systematic review was performed by searching PsycINFO, MEDLINE, healthevidence.org, OSF Preprints and PsyArXiv Preprints in May 2020 for studies including at least one health message promoting vaccine uptake of airborne-, droplet- and fomite-spread viruses. Included studies were assessed for quality using the Mixed Methods Appraisal Tool (MMAT) or the Assessment of Multiple Systematic Reviews (AMSTAR), and for patient and public involvement (PPI) in the research. Thirty-five articles were included. Most reported messages for seasonal influenza (n = 11; 31%) or H1N1 (n = 11; 31%). Evidence from moderate to high quality studies for improving vaccine uptake included providing information about virus risks and vaccination safety, as well as addressing vaccine misunderstandings, offering vaccination reminders, including vaccination clinic details, and delivering mixed media campaigns across hospitals or communities. Behavioural influences (beliefs and intentions) were improved when: shorter, risk-reducing or relative risk framing messages were used; the benefits of vaccination to society were emphasised; and beliefs about capability and concerns among target populations (e.g., vaccine safety) were addressed. Clear, credible, messages in a language target groups can understand were associated with higher acceptability. Two studies (6%) described PPI in the research process. Future campaigns should consider the beliefs and information needs of target populations in their design, including ensuring that vaccine eligibility and availability is clear, and messages are accessible. More high quality research is needed to demonstrate the effects of messaging interventions on actual vaccine uptake.

What influences people's responses to public health messages for managing risks and preventing infectious diseases? A rapid systematic review of the evidence and recommendations.

BACKGROUND: Individual behaviour changes, such as hand hygiene and physical distancing, are required on a population scale to reduce transmission of infectious diseases such as COVID-19. However, little is known about effective methods of communicating risk reducing information, and how populations might respond. OBJECTIVE: To synthesise evidence relating to what (1) characterises effective public health messages for managing risk and preventing infectious disease and (2) influences people's responses to messages. DESIGN: A rapid systematic review was conducted. Protocol is published on Prospero CRD42020188704. DATA SOURCES: Electronic databases were searched: Ovid Medline, Ovid PsycINFO and Healthevidence.org, and grey literature (PsyarXiv, OSF Preprints) up to May 2020. STUDY SELECTION: All study designs that (1) evaluated public health messaging interventions targeted at adults and (2) concerned a communicable disease spread via primary route of transmission of respiratory and/or touch were included. Outcomes included preventative behaviours, perceptions/awareness and intentions. Non-English language papers were excluded. SYNTHESIS: Due to high heterogeneity studies were synthesised narratively focusing on determinants of intentions in the absence of measured adherence/preventative behaviours. Themes were developed independently by two researchers and discussed within team to reach consensus. Recommendations were translated from narrative synthesis to provide evidence-based methods in providing effective messaging. RESULTS: Sixty-eight eligible papers were identified. Characteristics of effective messaging include delivery by credible sources, community engagement, increasing awareness/knowledge, mapping to stage of epidemic/pandemic. To influence intent effectively, public health messages need to be acceptable, increase understanding/perceptions of health threat and perceived susceptibility. DISCUSSION: There are four key recommendations: (1) engage communities in development of messaging, (2) address uncertainty immediately and with transparency, (3) focus on unifying messages from sources and (4) frame messages aimed at increasing understanding, social responsibility and personal control. Embedding principles of behavioural science into public health messaging is an important step towards more effective health-risk communication during epidemics/pandemics.

Application and Effectiveness of Telehealth to Support Severe Mental Illness Management: Systematic Review.

BACKGROUND: People with severe mental illness (SMI) must receive early interventions to prevent mental health deterioration or relapse. Telecommunications and other technologies are increasingly being used to assist in health care delivery using "telehealth," which includes telephones and mobile phones, computers, remote sensors, the internet, and other devices, to provide immediate real-time information to service users to improve the management of chronic health conditions. Some initial findings have suggested that technology could improve the quality of life of people with SMI. OBJECTIVE: In this systematic review, we aimed to identify the various uses and efficacy of telehealth technology for SMI. METHODS: We systematically searched electronic databases from inception to March 2016 (MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, Allied and Complementary Medicine Database, Health Technology Assessment, CINAHL Plus, and NHS Economic Evaluations Database) to identify randomized controlled trials evaluating telehealth for adults with SMI published in English. Additional literature was identified through searching reference lists of key articles. The articles meeting the inclusion criteria were systematically reviewed and assessed for quality and risk of bias. RESULTS: Our search identified 31 articles describing 29 trials as eligible for the review. The included studies evaluated the use of computers to deliver cognitive rehabilitation (15 trials), patient education (3 trials), and Web-based self-management interventions (2 trials) and to support consultations (1 trial). Virtual reality was used to simulate work and social situations (2 trials) and to deliver cognitive training (1 trial). Telephones were used to prompt service users to take medications (3 trials) and to report symptoms to their health care team (1 trial). Remote sensors were used to monitor medication use (1 trial). Telephone support was found effective in improving medication adherence and reducing the severity of symptoms and inpatient days. Computer-assisted cognitive rehabilitation was effective in improving cognitive function. The impact of telehealth on other outcomes was inconsistent. The results of this review should be taken in the context of varied quality in study design, with only 5 studies demonstrating a low risk of bias. CONCLUSIONS: A growing variety of telehealth technologies are being used to support the management of SMI. Specific technology types have been found to be effective for some outcomes (eg, telephone and remote medication monitoring for adherence to treatment), while other types of telehealth technologies (eg, delivery of patient education using computers) had no benefit over traditional nurse-based methods and were less acceptable to patients. Further research is warranted to establish the full potential benefits of telehealth for improving the quality of life in people with SMI, acceptability from the service user perspective, and cost-effectiveness. The findings of this review are limited by the poor quality of many of the studies reviewed.

Effectiveness and cost-effectiveness of a patient-initiated botulinum toxin treatment model for blepharospasm and hemifacial spasm compared to standard care: study protocol for a randomised controlled trial.

BACKGROUND: Blepharospasm and hemifacial spasm are debilitating conditions that significantly impact on patient quality of life. Cyclical treatment with botulinum toxin injections offers temporary relief, but the duration of treatment efficacy is variable. The standard model of patient care defines routine fixed-time based scheduled treatment cycles which may lead to unnecessarily frequent treatment for some patients and experience of distressing symptoms in others, if symptoms return before the scheduled follow-up period. METHODS/DESIGN: A randomised controlled trial will compare a patient-initiated model of care, where patients determine botulinum toxin treatment timing, to the standard model of care in which care is scheduled by the clinical team. A sample of 266 patients with blepharospasm or hemifacial spasm will be recruited from Moorfields Eye Hospital (MEH), London. The trial will be accompanied by a mixed-methods evaluation of acceptability of the new service. Patients who meet eligibility criteria will be assessed at baseline and those in the intervention group will be provided with instructions on how to book their own treatment appointments. Patients in both groups will be followed up 3 and 9 months into the trial and all patients will be returned to usual care after 9 months to meet safety protocols. Primary outcome measures include disease severity (questionnaire), functional disability (questionnaire) and patient satisfaction with care (questionnaire). Secondary outcomes include disease-specific quality of life (questionnaire), mood (questionnaire), illness and treatment perceptions (questionnaire and semi-structured interviews), economic impact (questionnaire) and acceptability (questionnaire and semi-structured interviews). DISCUSSION: This trial will assess the effectiveness and cost-effectiveness of a patient-led care model for botulinum toxin therapy. If the new model is shown to be effective in reducing distress and disability in these populations and is found to be acceptable to patients, whilst being cost-effective, this will have significant implications for service organisation across the NHS. TRIAL REGISTRATION: UK Clinical Research Network (UKCRN) Portfolio 18660. Clinicaltrials.gov ID NCT102577224 (registered 29 October 2015).

What are the psychosocial outcomes of treatment for thyroid eye disease? A systematic review.

BACKGROUND: Thyroid eye disease (TED) causes a number of esthetic and visual problems, and its treatment requires close clinical assessment, often for several years. There is evidence to suggest that clinical factors are poor indicators of patient-reported outcomes after treatments that aim to improve appearance, vision, or both. Psychosocial factors can impact on both adjustment to living with TED and also patients' perceptions of their improvements after treatment. There has been growing recognition that it is essential to evaluate treatment efficacy in terms of psychosocial outcomes, but, to date, there has been no review that has systematically evaluated psychosocial outcomes following a variety of treatments for TED. SUMMARY: Fifteen studies were included in the review, and six were randomized controlled trials. The studies varied greatly in methodological rigor; whilst major treatments such as surgery do improve quality of life outcomes, other noninvasive treatments such as intravenous steroids can have a similar impact and show long-term benefits. Only three studies reviewed orbital decompressive surgery, which showed better psychosocial outcomes than other types of surgery. CONCLUSIONS: The effect of some treatments remains unclear due to poor methodology and poor reporting of results. Clinicians need to be aware when planning rehabilitative treatments such as surgery of the influence of psychosocial factors on quality of life outcomes and the lack of a relationship with clinical factors such as disease severity.

Adaptation of the methotrexate in rheumatoid arthritis knowledge questionnaire (MiRAK) for use with parents of children with juvenile idiopathic arthritis: a qualitative study.

BACKGROUND: Although Methotrexate (MTX) is one of the most commonly prescribed disease-modifying drugs in JIA no questionnaire exists that assesses the knowledge of parents about this drug. A 60-item questionnaire was recently developed to measure rheumatoid arthritis (RA) patients' knowledge about MTX; the Methotrexate in Rheumatoid Arthritis Knowledge Test (MiRAK; Ciciriello et al. (Arthritis Rheum 62:10-1009, 2010)). This study aimed to adapt the MiRAK for parents of children with JIA. METHODS: Adaption of the MiRAK involved: 1) email consultations with clinicians working in the field of paediatric rheumatology (Panel 1) to ascertain the potential adaptations of the MiRAK from a clinical perspective, 2) synthesis of clinicians' suggestions by a panel of experts, researchers and MiRAK developers (Panel 2) to reach consensus on which items needed to be modified and create a draft Methotrexate in Juvenile Idiopathic Arthritis Knowledge Test (MiJIAK), 3) a review of the draft by 5 parents of children with JIA (Panel 3) using the cognitive 'think-aloud' method, 4) a second consultation with Panel 2 to review parents' suggestions and determine the final items. RESULTS: A total of 9 items remained unchanged, e.g. "Methotrexate is effective at relieving joint stiffness", 19 were deemed inappropriate in the paediatric setting and deleted, e.g. "It is safe to become pregnant 3 weeks after methotrexate has been stopped", 32 underwent editorial changes largely to indicate that the questionnaire was about the children with JIA, e.g. "If you forget to give a dose of Methotrexate, you can still take it the next day" became "If your child misses a dose of Methotrexate, they can still take it the next day", and 1 new item was added. A new 42-item questionnaire was produced and was found to be well understood by parents of children with JIA. CONCLUSIONS: The systematic modification of the MiRAK, a patient-centred MTX knowledge questionnaire, has generated a comprehensive new questionnaire for use in the JIA setting. The wide consultation process, including cognitive testing, has ensured the tool is both relevant and acceptable to clinicians and will therefore be a valuable addition in understanding the parents' perspective of this treatment in JIA.