Timely digital patient-clinician communication in specialist clinical services for young people : a mixed-methods study (the LYNC study)

BACKGROUND: Young people (aged 16-24 years) with long-term health conditions can disengage from health services, resulting in poor health outcomes, but clinicians in the UK National Health Service (NHS) are using digital communication to try to improve engagement. Evidence of effectiveness of this digital communication is equivocal. There are gaps in evidence as to how it might work, its cost, and ethical and safety issues. OBJECTIVE: Our objective was to understand how the use of digital communication between young people with long-term conditions and their NHS specialist clinicians changes engagement of the young people with their health care; and to identify costs and necessary safeguards. METHODS: We conducted mixed-methods case studies of 20 NHS specialist clinical teams from across England and Wales and their practice providing care for 13 different long-term physical or mental health conditions. We observed 79 clinical team members and interviewed 165 young people aged 16-24 years with a long-term health condition recruited via case study clinical teams, 173 clinical team members, and 16 information governance specialists from study NHS Trusts. We conducted a thematic analysis of how digital communication works, and analyzed ethics, safety and governance, and annual direct costs. RESULTS: Young people and their clinical teams variously used mobile phone calls, text messages, email, and voice over Internet protocol. Length of clinician use of digital communication varied from 1 to 13 years in 17 case studies, and was being considered in 3. Digital communication enables timely access for young people to the right clinician at the time when it can make a difference to how they manage their health condition. This is valued as an addition to traditional clinic appointments and can engage those otherwise disengaged, particularly at times of change for young people. It can enhance patient autonomy, empowerment and activation. It challenges the nature and boundaries of therapeutic relationships but can improve trust. The clinical teams studied had not themselves formally evaluated the impact of their intervention. Staff time is the main cost driver, but offsetting savings are likely elsewhere in the health service. Risks include increased dependence on clinicians, inadvertent disclosure of confidential information, and communication failures, which are mostly mitigated by young people and clinicians using common-sense approaches. CONCLUSIONS: As NHS policy prompts more widespread use of digital communication to improve the health care experience, our findings suggest that benefit is most likely, and harms are mitigated, when digital communication is used with patients who already have a relationship of trust with the clinical team, and where there is identifiable need for patients to have flexible access, such as when transitioning between services, treatments, or lived context. Clinical teams need a proactive approach to ethics, governance, and patient safety

The OPERA trial : protocol for a randomised trial of an exercise intervention for older people in residential and nursing accommodation

Background Depression is common in residents of Residential and Nursing homes (RNHs). It is usually undetected and often undertreated. Depression is associated with poor outcomes including increased morbidity and mortality. Exercise has potential to improve depression, and has been shown in existing trials to improve outcomes among younger and older people. Existing evidence comes from trials that are short, underpowered and not from RNH settings. The aim of the OPERA trial is to establish whether exercise is effective in reducing the prevalence of depression among older RNH residents. Method OPERA is a cluster randomised controlled trial. RNHs are randomised to one of two groups with interventions lasting 12 months Intervention group: a depression awareness and physical activity training session for care home staff, plus a whole home physical activation programme including twice weekly physiotherapist-led exercise groups. The intervention lasts for one year from randomisation, or Control group: a depression awareness training session for care home staff. Participants are people aged 65 or over who are free of severe cognitive impairment and willing to participate in the study. Our primary outcome is the prevalence of depressive symptoms, a GDS-15 score of five or more, in all participants at the end of the one year intervention period. Our secondary depression outcomes include remission of depressive symptoms and change in GDS-15 scores in those with depressive symptoms prior to randomisation. Other secondary outcomes include, fear of falling, mobility, fractures, pain, cognition, costs and health related quality of life. We aimed to randomise 77 RNHs. Discussion Home recruitment was completed in May 2010; 78 homes have been randomised. Follow up will finish in May 2011 and results will be available late 2011

Dementia And Physical Activity (DAPA) trial of moderate to high intensity exercise training for people with dementia: randomised controlled trial

Objectives To estimate the effect of a moderate to high intensity aerobic and strength exercise training program on cognitive impairment and other outcomes in people with mild to moderate dementia. Design A multicentre, pragmatic, investigator-masked, randomised controlled trial with one year follow up. Participants and clinical providers were not masked. Random allocation was 2:1 in favour of the exercise arm. Setting We identified 494 people with dementia in NHS primary care, community and memory services, dementia research registers, and voluntary sector providers in 15 English regions. We delivered interventions in community gym facilities and NHS premises. Participants The average age was 77 (SD 7.9) years and 301/494 (61%) were male. Main outcome measures The primary outcome was the Alzheimer’s Disease Assessment Scale-cognitive subscale (ADAS-cog) score at 12 months. Secondary outcomes included activities of daily living, neuropsychiatric symptoms, health-related quality of life, and carer quality of life and burden. We measured physical fitness (including the 6-minute walk test) in the exercise arm during the intervention. Interventions Usual care plus four months of supervised exercise and support for on-going physical activity, or usual care only. Results By 12 months the mean ADAS-cog score increased to 25·2 (SD12·3) in the exercise group and 23·8 (SD 10·4) in the usual care group (adjusted between group difference -1·4 (95% CI -2·6 to -0·2, p=0·026) This indicates greater cognitive impairment in the exercise group but the average difference is small and clinical relevance uncertain. There were no differences in secondary outcomes or pre-planned sub-group analyses of dementia type (Alzheimer or other), severity of cognitive impairment, gender, and mobility. Compliance with exercise was good. Over (214/329) 65% of participants attended more than three-quarters of scheduled sessions. Six minute walking distance improved over 6 weeks (mean change 18.1m (95% CI 11.6 to 24.6)). Conclusion A moderate to high intensity aerobic and strength exercise training program does not slow cognitive impairment in people with mild to moderate dementia. The exercise training programme improved physical fitness, but no other clinical outcomes responded in a positive direction. </p

Timely Digital Patient-Clinician Communication in Specialist Clinical Services for Young People:A Mixed-Methods Study (The LYNC Study)

Background Young people (age 16-24 years) with long-term health conditions can disengage from health services resulting in poor health outcomes, but clinicians in the UK NHS are using digital communication to try and improve engagement. Evidence of effectiveness of this digital communication is equivocal. There are gaps in evidence as to how it might work, its cost, ethical and safety issues. Objectives To understand how the use of digital communication between young people with long-term conditions and their UK NHS specialist clinicians changes engagement of the young people with their health care; to identify costs and necessary safeguards. Methods Mixed method case studies of 20 NHS specialist clinical teams from across England and Wales and their current practice providing care for 13 different long-term physical or mental health conditions. Observation of 79 clinical team members; interviews with 165 young people aged 16-24 years living with a long-term health condition recruited via case study clinical teams, 173 clinical team members, 16 Information Governance Specialists from study NHS Trusts. Analysis: thematic analysis of how digital communication works; ethics, safety and governance; annual direct costs. Results Young people and their clinical teams variously used: mobile phone calls, text messages, email, Voice over Internet Protocol. Length of clinician use of digital communication varied from one to 13 years in 17 case studies, and was being considered in three. Digital communication enables timely access for young people to the right clinician at the time when it can make a difference to how they manage their health condition. This is valued as an addition to traditional clinic appointments and can engage those otherwise disengaged. It can enhance patient autonomy, empowerment and activation. It challenges the nature and boundaries of therapeutic relationships but can improve trust. The clinical teams studied had not themselves formally evaluated the impact of their intervention. Staff time is the main cost driver but offsetting savings are likely elsewhere in the health service. Risks include increased dependence on clinicians, inadvertent disclosure of confidential information and communication failures, which are mostly mitigated by young people and clinicians using common sense approaches. Conclusions Timely digital access to clinical teams is providing a flexible, personalised service for young people with long-term conditions. It engages young people with their health care including those who are otherwise hard to reach. As NHS policy prompts more widespread use of digital communication to improve health care experience, our findings suggest benefit is most likely, and harms mitigated, when used with patients where there is already an existing relationship of trust with the clinical team, and where there is identifiable need for patients to have flexible access, such as when transitioning between services, treatments or lived context. Clinical teams need a proactive approach to ethics, governance and patient safety

Mechanical versus manual chest compression for out-of-hospital cardiac arrest (PARAMEDIC): a pragmatic, cluster randomised controlled trial

Background Mechanical chest compression devices have the potential to help maintain high-quality cardiopulmonary resuscitation (CPR), but despite their increasing use, little evidence exists for their effectiveness. We aimed to study whether the introduction of LUCAS-2 mechanical CPR into front-line emergency response vehicles would improve survival from out-of-hospital cardiac arrest. Methods The pre-hospital randomised assessment of a mechanical compression device in cardiac arrest (PARAMEDIC) trial was a pragmatic, cluster-randomised open-label trial including adults with non-traumatic, out-of-hospital cardiac arrest from four UK Ambulance Services (West Midlands, North East England, Wales, South Central). 91 urban and semi-urban ambulance stations were selected for participation. Clusters were ambulance service vehicles, which were randomly assigned (1:2) to LUCAS-2 or manual CPR. Patients received LUCAS-2 mechanical chest compression or manual chest compressions according to the first trial vehicle to arrive on scene. The primary outcome was survival at 30 days following cardiac arrest and was analysed by intention to treat. Ambulance dispatch staff and those collecting the primary outcome were masked to treatment allocation. Masking of the ambulance staff who delivered the interventions and reported initial response to treatment was not possible. The study is registered with Current Controlled Trials, number ISRCTN08233942. Findings We enrolled 4471 eligible patients (1652 assigned to the LUCAS-2 group, 2819 assigned to the control group) between April 15, 2010 and June 10, 2013. 985 (60%) patients in the LUCAS-2 group received mechanical chest compression, and 11 (<1%) patients in the control group received LUCAS-2. In the intention-to-treat analysis, 30 day survival was similar in the LUCAS-2 group (104 [6%] of 1652 patients) and in the manual CPR group (193 [7%] of 2819 patients; adjusted odds ratio [OR] 0·86, 95% CI 0·64—1·15). No serious adverse events were noted. Seven clinical adverse events were reported in the LUCAS-2 group (three patients with chest bruising, two with chest lacerations, and two with blood in mouth). 15 device incidents occurred during operational use. No adverse or serious adverse events were reported in the manual group. Interpretation We noted no evidence of improvement in 30 day survival with LUCAS-2 compared with manual compressions. On the basis of ours and other recent randomised trials, widespread adoption of mechanical CPR devices for routine use does not improve survival. Funding National Institute for Health Research HTA — 07/37/69

The role of digital communication in patient-clinician communication for NHS providers of specialist clinical services for young people [the Long-term conditions Young people Networked Communication (LYNC) study]: a mixed-methods study

Background Young people (age 16-25 years) with long term health conditions tend to disengage from health services resulting in poor health outcomes. They are prolific users of digital communications. Innovative UK National Health Service (NHS) clinicians use digital communication with these young people. The NHS plans to use digital communication with patients more widely. Objectives To explore how health care engagement can be improved using digital clinical communication; understand effects, impacts, costs and necessary safeguards; provide critical analysis of its use, monitoring and evaluation. Design Observational mixed methods case studies; systematic scoping literature reviews; assessment of patient reported outcome measures; public and patient involvement (PPI); consensus development through focus groups. Setting Twenty NHS specialist clinical teams from across England and Wales, providing care for 13 different long term physical or mental health conditions. Participants 165 young people aged 16-25 years living with a long term health condition; 13 parents; 173 clinical team members; 16 Information Governance Specialists. Interventions Clinical teams and young people variously used: mobile phone calls, text messages, email, Voice over Internet Protocol. Main outcome measures Empirical work: thematic and ethical analysis of qualitative data; annual direct costs; Did Not Attend, Accident and Emergency Attendance and Hospital Admissions rates plus clinic specific clinical outcomes. Scoping reviews: patient, health professional and service delivery outcomes and technical problems. Patient reported outcome measures: scale validity, relevance and credibility. Data sources Observation, interview, structured survey, routinely collected data, focus groups, peer reviewed publications. Results Digital communication enables access for young people to the right clinician when it makes a difference for managing their health condition. This is valued as additional to traditional clinic appointments. This access challenges the nature and boundaries of therapeutic relationships but can improve them, increase patient empowerment and enhance activation. Risks include increased dependence on clinicians, inadvertent disclosure of confidential information and communication failures, but clinicians and young people mitigate these risks. Workload increases, and staff time is the main cost. Clinical teams had not evaluated impact of their intervention, and analysis of routinely collected data did not identify any impact. There are no currently used generic outcome measures but the Patient Activation Measure and the Physician Humanistic Behaviour Questionnaire are promising. Scoping reviews suggest digital clinical communication is acceptable to young people but with no clear evidence of benefit except for mental health. Limitations Qualitative data was mostly from clinician enthusiasts. No interviews were achieved with young people who do not attend clinics. Clinicians struggled to estimate workload. Only eight full sets of routine data were available. Conclusions Timely digital clinical communication is perceived as making a difference to health care and health outcome for young people with long term conditions but this is not supported by evidence that measures health outcome. Such communication is challenging and costly to provide but valued by young people. Future work Future development should distinguish digital communication replacing traditional clinic appointments and additional timely communication. Evaluation is needed that uses relevant generic outcomes