Veronika Williams

Self-management support using an Internet-linked tablet computer (the EDGE platform)-based intervention in chronic obstructive pulmonary disease: protocol for the EDGE-COPD randomised controlled trial

Introduction The potential for telehealth-based interventions to provide remote support, education and improve self-management for long-term conditions is increasingly recognised. This trial aims to determine whether an intervention delivered through an easy-to-use tablet computer can improve the quality of life of patients with chronic obstructive pulmonary disease (COPD) by providing personalised self-management information and education. Methods and analysis The EDGE (sElf management anD support proGrammE) for COPD is a multicentre, randomised controlled trial designed to assess the efficacy of an Internet-linked tablet computer-based intervention (the EDGE platform) in improving quality of life in patients with moderate to very severe COPD compared with usual care. Eligible patients are randomly allocated to receive the tablet computer-based intervention or usual care in a 2:1 ratio using a web-based randomisation system. Participants are recruited from respiratory outpatient clinics and pulmonary rehabilitation courses as well as from those recently discharged from hospital with a COPD-related admission and from primary care clinics. Participants allocated to the tablet computer-based intervention complete a daily symptom diary and record clinical symptoms using a Bluetooth-linked pulse oximeter. Participants allocated to receive usual care are provided with all the information given to those allocated to the intervention but without the use of the tablet computer or the facility to monitor their symptoms or physiological variables. The primary outcome of quality of life is measured using the St Georges Respiratory Questionnaire for COPD patients (SGRQ-C) baseline, 6 and 12 months. Secondary outcome measures are recorded at these intervals in addition to 3 months. Ethics and dissemination The Research Ethics Committee for Berkshire—South Central has provided ethical approval for the conduct of the study in the recruiting regions. The results of the study will be disseminated through peer review publications and conference presentations. Trial registration Current controlled trials ISRCTN40367841.

Patients' experience of identifying and managing exacerbations in COPD: a qualitative study.

Background:Effective self-management in chronic obstructive pulmonary disease (COPD) is crucial to reduce hospital admissions and improve outcomes for patients. This includes early detection and treatment of exacerbations by patients themselves.Aims:To explore patients’ current understanding and experience of managing and identifying COPD exacerbations at home.Methods:A qualitative, interview-based study was carried out in patients’ homes. Interviews were audio-recorded, transcribed and analysed using a grounded theory approach. Forty-four patients (17 women, 27 men; age range 55–85 years), with moderate-to-very-severe COPD, were recruited to the interview study from primary and secondary care settings in Oxford, UK, during 2012–2013.Results:Patients identified exacerbations on the basis of measurable, ‘visible’ symptoms, such as cough and sputum and ‘invisible’ symptoms, such as chest sensations and bodily knowledge. Most patients seemed to use a combination of these approaches when identifying exacerbations, according to the symptoms that had the most impact on their well-being. Patients used additional self-management strategies during an exacerbation, such as self-medication (antibiotics and steroids) and monitored their recovery. Contact with health-care professionals usually occurred when patients felt no longer able to manage themselves.Conclusions:Patients use both assessment of objective biomarkers, which are aligned with medical knowledge, and subjective symptoms based on their experience, to identify and manage exacerbations of COPD. Health-care professionals and clinicians should acknowledge this ‘expert patient’ knowledge and integrate this into patients’ care plans to facilitate early recognition and treatment of exacerbations.

The meaning and importance of dignified care: findings from a survey of health and social care professionals

BackgroundThere are well established national and local policies championing the need to provide dignity in care for older people. We have evidence as to what older people and their relatives understand by the term ‘dignified care’ but less insight into the perspectives of staff regarding their understanding of this key policy objective.MethodsA survey of health and social care professionals across four NHS Trusts in England to investigate how dignified care for older people is understood and delivered. We received 192 questionnaires of the 650 distributed.ResultsHealth and social care professionals described the meaning of dignified care in terms of their relationships with patients: ‘respect’ (47%), ‘being treated as an individual’ (40%), ‘being involved in decision making’ (26%) and ‘privacy’ (24%). ‘Being treated as an individual’ and ‘maintaining privacy’ were ranked as the most important components of dignified care. Physical caring tasks such as ‘helping with washing, dressing and feeding’ were rarely described as being part of dignified care and attributed much less importance than the relational components.ConclusionDignity in care is a concept with multiple meanings. Older people and their relatives focus upon the importance of providing physical care when describing what this means to them. Our participants focussed upon the relational aspects of care delivery rather than care itself. Proactive measures are therefore required to ensure that the physical aspects of care are met for all older people receiving care in NHS trusts.

Issues of collaboration, representation, meaning and emotions: utilising participant-led visual diaries to capture the everyday lives of people in mid to later life

Abstract In recent years there has been an increasing use of visual methods in ageing research. There are, however, limited reflections and critical explorations of the implications of using visual methods in research with people in mid to later life. This paper examines key methodological complexities when researching the daily lives of people as they grow older and the possibilities and limitations of using participant-generated visual diaries. The paper will draw on our experiences of an empirical study, which included a sample of 62 women and men aged 50 years and over with different daily routines. Participant-led photography was drawn upon as a means to create visual diaries, followed by in-depth, photo-elicitation interviews. The paper will critically reflect on the use of visual methods for researching the daily lives of people in mid to later life, as well as suggesting some wider tensions within visual methods that warrant attention. First, we explore the extent to which photography facilitates a ‘collaborative’ research process; second, complexities around capturing the ‘everydayness’ of daily routines are explored; third, the representation and presentation of ‘self’ by participants within their images and interview narratives is examined; and, finally, we highlight particular emotional considerations in visualising daily life.

The meaning of dignified care: an exploration of health and social care professionals’ perspectives working with older people

BackgroundDespite well established national and local policies championing the need to provide dignity in care for older people, there continues to be a wealth of empirical evidence documenting how we are failing to deliver this. While we have evidence as to what older people and their relatives understand by the term ‘dignified care’ we have less insight into the perspectives of staff regarding their understanding of this key policy objective. This paper aimed to explore the meaning of dignified care from the perspective of health and social care professionals’ working with older people. In-depth interviews and focus groups with health and social care professionals were carried out across four NHS Trusts in England, as part of a larger study, to investigate how dignified care for older people is understood and delivered. A total of 48 health professionals took part in in-depth interviews and 33 health and social care professionals participated in one of eight focus groups.ResultsHealth and social care professionals defined the meaning of dignified care as: ‘dignity is the backbone of care’, ‘it’s the “little things”’, ‘feeling safe and secure’, ‘treat as you want to be treated’, ‘treat as an individual’ and ‘Dignity encompasses multiple factors’. ‘Hands on’ aspects of care were rarely mentioned when defining dignity. This suggests that policies around providing dignified care are being interpreted as an approach towards care and not with direct care provision. This limited interpretation of dignity may be one factor contributing to the continued neglect of older people in acute settings.ConclusionsThese findings highlight that proactive measures are required to ensure that both relational and ‘hands on’ aspects of care are met for all older people receiving care in NHS trusts.

Self-Management Support Using a Digital Health System Compared With Usual Care for Chronic Obstructive Pulmonary Disease: Randomized Controlled Trial

Background We conducted a randomized controlled trial of a digital health system supporting clinical care through monitoring and self-management support in community-based patients with moderate to very severe chronic obstructive pulmonary disease (COPD). Objective The aim of this study was to determine the efficacy of a fully automated Internet-linked, tablet computer-based system of monitoring and self-management support (EDGE‚ sElf-management anD support proGrammE) in improving quality of life and clinical outcomes. Methods We compared daily use of EDGE with usual care for 12 months. The primary outcome was COPD-specific health status measured with the St George’s Respiratory Questionnaire for COPD (SGRQ-C). Results A total of 166 patients were randomized (110 EDGE, 56 usual care). All patients were included in an intention to treat analysis. The estimated difference in SGRQ-C at 12 months (EDGE−usual care) was −1.7 with a 95% CI of −6.6 to 3.2 (P=.49). The relative risk of hospital admission for EDGE was 0.83 (0.56-1.24, P=.37) compared with usual care. Generic health status (EQ-5D, EuroQol 5-Dimension Questionnaire) between the groups differed significantly with better health status for the EDGE group (0.076, 95% CI 0.008-0.14, P=.03). The median number of visits to general practitioners for EDGE versus usual care were 4 versus 5.5 (P=.06) and to practice nurses were 1.5 versus 2.5 (P=.03), respectively. Conclusions The EDGE clinical trial does not provide evidence for an effect on COPD-specific health status in comparison with usual care, despite uptake of the intervention. However, there appears to be an overall benefit in generic health status; and the effect sizes for improved depression score, reductions in hospital admissions, and general practice visits warrants further evaluation and could make an important contribution to supporting people with COPD. Trial registration International Standard Randomized Controlled Trial Number (ISRCTN): 40367841; http://www.isrctn.com/ISRCTN40367841 (Archived by WebCite at http://www.webcitation.org/6pmfIJ9KK)

Digital health citizens and the future of the NHS

Health systems worldwide are facing unprecedented challenges as they seek to deliver better value healthcare against a backdrop of increasing levels of chronic disease, ageing populations, global financial crises and reduced public spending, and digital health tools and services are widely touted as

Facilitators and barriers to physical activity following pulmonary rehabilitation in COPD: a systematic review of qualitative studies

Pulmonary rehabilitation has short-term benefits on dyspnea, exercise capacity and quality of life in COPD, but evidence suggests these do not always translate to increased daily physical activity on a patient level. This is attributed to a limited understanding of the determinants of physical activity maintenance following pulmonary rehabilitation. This systematic review of qualitative research was conducted to understand COPD patients’ perceived facilitators and barriers to physical activity following pulmonary rehabilitation. Electronic databases of published data, non-published data, and trial registers were searched to identify qualitative studies (interviews, focus groups) reporting the facilitators and barriers to physical activity following pulmonary rehabilitation for people with COPD. Thematic synthesis of qualitative data was adopted involving line-by-line coding of the findings of the included studies, development of descriptive themes, and generation of analytical themes. Fourteen studies including 167 COPD patients met the inclusion criteria. Seven sub-themes were identified as influential to physical activity following pulmonary rehabilitation. These included: intentions, self-efficacy, feedback of capabilities and improvements, relationship with health care professionals, peer interaction, opportunities following pulmonary rehabilitation and routine. These encapsulated the facilitators and barriers to physical activity following pulmonary rehabilitation and were identified as sub-themes within the three analytical themes, which were beliefs, social support, and the environment. The findings highlight the challenge of promoting physical activity following pulmonary rehabilitation in COPD and provide complementary evidence to aid evaluations of interventions already attempted in this area, but also adds insight into future development of interventions targeting physical activity maintenance in COPD.

VIEWPOINT: What counts as online patient feedback, and for whom?

Online patient feedback is quickly becoming pervasive enough to warrant serious attention. For many decades, patients have been asked and encouraged to fill out paper-based questionnaires to give feedback on the care that they received. These have been used for a number of reasons, including to measure how the service has been rated by the patients, and to suggest areas for improvement. They were seen as a good alternative to face-to-face feedback because their impersonal nature can allow patients to more comfortably give feedback about the staff who care for them whilst minimising social desirability effects. As well as this, the usual power dynamics between health professionals and patients were thought to be diminished, and patients could, in theory at least, offer honest critique without fearing pushback, or negative consequences on their subsequent care. More recently, with the advent of digital technologies and an increasing connectivity to the web, online patient feedback has been flung into the spotlight, stimulating research into how this might change current practice and whether it can lead to an increase in quality of care. In theory, patients can now leave feedback using a website or app at a time and place of their choosing, with or without anonymity, rather than doing so in person at the hospital or local general practice. Consequently, within healthcare organisations, the jobs of patient experience leads, quality outcome and assurance managers, and data analysts, amongst others, are changing to assimilate feedback gathered online alongside more traditional methods, and with this there are new things to learn about how best to harness and use this online patient feedback to improve quality and outcomes for patients. There is, however, a fundamental gap in the understanding of what constitutes online patient feedback. Generally it is referred to in monolithic terms, abbreviated to OPF in some sources, implying a universally acknowledged and understood phrase. However, as this field advances in research and practice, we need to deconstruct this, and consider more carefully what counts as its three facets: ‘online’, ‘patient’ and ‘feedback’. When describing online patient feedback there are often a number of different assumptions at play (see Table 1 below). These different assumptions exist not only between researchers, the public, clinicians, and staff in the NHS, but also amongst these different groups and which assumptions are held matters beyond just semantics. It could potentially affect many aspects of service delivery: who is able to give feedback (the patient? Their relative? An observer?); what content counts as legitimate feedback, and what gains attention from the healthcare provider (formal complaints? Recommendations for action? All comments?); and how health services may unwittingly shape the system in favour of certain people or certain types of feedback (are certain channels permitted or excluded? Are particular resources and skills required to access and use the channel?). We need to be much clearer in articulating what exactly we mean by online patient feedback. Early observations from an ethnographic study at various organisational sites in the UK (NHS Trusts) conducted by the author (FD) as part of a larger programme of work in this area, suggest that from an institutional perspective, there is a difference between feedback that is sanctioned (feedback obtained through a medium that is approved by the Trust as an official feedback channel), solicited (consistently asked for from patients or carers) and sought (actively searched for and used), and feedback that is unsanctioned (not officially approved), unsolicited (not asked for), and unsought (not searched for). We refer to these as SSS feedback and UUU feedback, respectively. SSS feedback is that which is actively solicited by organisations, teams, services and localities. Here patients may be encouraged to give feedback through a designated weblink, or asked to leave feedback

Effectiveness and cost-effectiveness of a fully self-guided internet-based intervention for sub-clinical social anxiety symptoms: Protocol for a randomised controlled trial

Design and objective This paper describes the protocol for a large-scale pragmatic, randomised controlled trial and economic evaluation to investigate the effectiveness and cost-effectiveness of the self-directed E-Couch social anxiety module versus a waiting list control condition, for reducing sub-clinical social anxiety symptoms in the general population. Study population Community-based adults (aged 18+) with social anxiety symptoms that do not meet the criteria for social anxiety disorder recruited via a direct-to-consumer advertisement on national websites. Intervention and control Intervention is the self-guided E-Couch social anxiety module. Control group participants are placed on a waiting list to receive the intervention at the end of the trial. Both groups receive email and text message reminders. Outcome measures The primary outcome will be change in self-reported social anxiety score using the Social Phobia Inventory (SPIN). Secondary outcomes will be the changes in the following self-report measures: Brief Fear of Negative Evaluation scale (BFNE-S); depression (CES-D); mental wellbeing (SWEMWEBS); health status (SF36); use of health services; safety events; and adherence, retention, and attrition rates. All measures will be administered at baseline, 6 weeks, and 3, 6 and 12 months. Analysis A mixed effects model will be used to analyse the effect of the intervention on the primary and secondary outcomes (intention to treat analysis). Secondary analyses will explore moderators and mediators of effect. A prospective economic evaluation, conducted from a NHS and social care perspective, will provide estimates of cost utility and cost-effectiveness. An interview study will be conducted with 20 participants to explore issues including acceptability, adherence, retention and attrition. Trial registration numbers NCT02451878 and ISRCTN15819951