A randomised controlled, feasibility study to establish the acceptability of early outpatient review and early cardiac rehabilitation compared to standard practice after cardiac surgery and viability of a future large-scale trial (FARSTER).

OBJECTIVE: To determine the acceptability and feasibility of delivering early outpatient review following cardiac surgery and early cardiac rehabilitation (CR), compared to standard practice to establish if a future large-scale trial is achievable. METHODS: A randomised controlled, feasibility trial with embedded health economic evaluation and qualitative interviews, recruited patients aged 18-80 years from two UK cardiac centres who had undergone elective or urgent cardiac surgery via a median sternotomy. Eligible, consenting participants were randomised 1:1 by a remote, centralised randomisation service to postoperative outpatient review 6 weeks after hospital discharge, followed by CR commencement from 8 weeks (control), or postoperative outpatient review 3 weeks after hospital discharge, followed by commencement of CR from 4 weeks (intervention). The primary outcome measures related to trial feasibility including recruitment, retention, CR adherence, and acceptability to participants/staff. Secondary outcome measures included health-rated quality of life using EQ-5D-5L, NHS resource-use, Incremental Shuttle Walk Test (ISWT) distance, 30- and 90-day mortality, surgical site complications and hospital readmission rates. RESULTS: Fifty participants were randomised (25 per group) and 92% declared fit for CR. Participant retention at final follow-up was 74%; completion rates for outcome data time points ranged from 28 to 92% for ISWT and 68 to 94% for follow-up questionnaires. At each time point, the mean ISWT distance walked was greater in the intervention group compared to the control. Mean utility scores increased from baseline to final follow-up by 0.202 for the intervention (0.188 control). Total costs were £1519 for the intervention (£2043 control). Fifteen participants and a research nurse were interviewed. Many control participants felt their outpatient review and CR could have happened sooner; intervention participants felt the timing was right. The research nurse found obtaining consent for willing patients challenging due to discharge timings. CONCLUSION: Recruitment and retention rates showed that it would be feasible to undertake a full-scale trial subject to some modifications to maximise recruitment. Lower than expected recruitment and issues with one of the clinical tests were limitations of the study. Most study procedures proved feasible and acceptable to participants, and professionals delivering early CR. TRIAL REGISTRATION: ISRCTN80441309 (prospectively registered on 24/01/2019).

'Whose life are They Going to Save? It's Probably Not Going to be Mine!' Living With a Life-Shortening Condition During the Coronavirus (COVID-19) Pandemic: A Grounded Theory Study of Embodied Precarity.

This article explores the experiences of young adults with a life-shortening condition in the first wave of the Coronavirus (COVID-19) pandemic in the UK. It presents the findings from an inclusive qualitative research study using constructivist grounded theory which aimed to examine the unintended consequences of pandemic control measures (lockdown and 'shielding') on this population. Purposive and theoretical sampling methods were used to recruit young adults with a life-shortening condition, employing a range of recruitment methods such as social media, advertising in newsletters and snowballing. Twenty-six young adults (aged 22-40 years), with a wide range of life-shortening conditions participated in the study. Seventeen participants were female and nine male. The majority identified as White British/Other and the remainder as Black British (2), Mixed Race (2) or Latin American (1). Data were generated iteratively using in-depth guided interviews and analysed collectively by an inclusive research team using the constant comparative method. The article explores a theory of embodied precariousness of living with a life-shortening condition during the first wave of the Coronavirus pandemic in relation to three categories: the rationing of life-saving treatment, the deterioration of health and retraction of healthcare provision, and the disruption of typical care arrangements. The findings show that the pandemic control measures introduced to keep people safe have intensified the precarity of this group promoting inequalities in healthcare and health outcomes. The article identifies some implications for practice to support the future management of unexpected and unwanted change.

Addressing inequitable access to hospice care.

The 'Lancet Commission on the Value of Death' proposes radical change and challenges the very core of hospice service provision. Without action, inequalities in access to hospice care will continue to be amplified. The COVID-19 pandemic brought increased needs and demands in the community setting but also provided opportunities for new palliative partnerships and ways of working. Returning to the status quo should not be an option. Rather moving towards a shared vision and purpose, which has the person and their community network at its centre, enables hospices to have a pivotal role and bring about more equitable palliative care.

‘Exhausted, emotional, at breaking point’: the mental wellbeing of young adults with shortened lives

BackgroundYoung adults with life-limiting or life-threatening conditions (LLTCs) are ordinarily extremely challenged in terms of health and wellbeing and especially vulnerable to social isolation and exclusion (Johnson & Hodgson, 2018;Knighting K, Bray L, Downing J, et al., 2018). Society’s response to COVID-19 poses an additional threat to this group who are at risk of being further left behind, creating long-lasting consequences for their mental wellbeing.AimsTo examine the unintended consequences of (COVID-19) epidemic-control decisions on young adults with LLTCs to (a) understand the needs of this group (b) develop guidance and support and, (c) determine how consequences could be mitigated.MethodsThis inclusive research project, underpinned by an interpretive qualitative framework (Denzin, 2003) draws on the principles of co-design (Nind, 2014). Research participants were recruited using purposive and theoretical sampling using a variety of methods including advertising for participants, existing networks and snowballing. During July-September 2020, in-depth interviews were conducted via video-conference with 28 young adults aged 18-40. Data were analysed iteratively using constructivist Grounded Theory Method (cGTM) (Charmaz, 2006) and using the qualitative software analysis package QSR NVivo.ResultsParticipants experienced a decline in mental wellbeing with those with pre-existing mental health issues showing the most significant decline;in these cases, participants spoke about suicidal ideation, depression and anxiety and an increased need for medication and therapy. Many participants described a ‘rollercoaster’ of emotions and said that they had felt ‘petrified’ ‘overwhelmed, ‘worried’ and ‘forgotten’. Key themes included (a) the constant management of risk to avoid (physical) harm from COVID-19 while protecting mental health (b) the desire to ‘keep busy’ as a means of ‘thinking less’ in order stay mentally well (c) a re-evaluation of what matters in life.ConclusionMain learning points: (1) acknowledgement that although people with LLTCs are typically isolated and excluded that the pandemic has magnified and exacerbated this;(2) the need for regular communication;(3) enhanced mental health support.