AMRC open research最新文献

Background: Prior to undertaking a study looking at the effects of the COVID-19 pandemic upon lived experiences of hospice services in the West Midlands, we sought to identify the range of issues that hospice service users and providers faced between March 2020 and July 2021, and to provide a report that can be accessed and understood by all interested stakeholders.

Methods: We undertook a collaborative multi-stakeholder approach for scoping the range of potential issues and synthesising knowledge. This involved a review of available literature; a focus group with hospice stakeholders; and a collaborative knowledge exchange panel.

Results: The literature on the effects of the COVID-19 pandemic on hospices remains limited, but it is developing a picture of a service that has had to rapidly adapt the way it provides care and support to its service users, during a period when it faced many fundamental challenges to established ways of providing these services.

Results: The impacts of many of the changes on hospices have not been fully assessed. It is also not known what the effects upon the quality of care and support are for those with life-limiting conditions and those that care for them. We found that the pandemic has presented a new normative and service context in which quality of care and life itself was valued that is, as yet, poorly understood.

Background: Evidence is lacking for safe and effective treatments for juvenile localised scleroderma (JLS). Methotrexate (MTX) is commonly used first line and mycophenolate mofetil (MMF) second line, despite a limited evidence base. A head to head trial of these two medications would provide data on relative efficacy and tolerability. However, a frequentist approach is difficult to deliver in JLS, because of the numbers needed to sufficiently power a trial. A Bayesian approach could be considered.

Methods: An international consensus meeting was convened including an elicitation exercise where opinion was sought on the relative efficacy and tolerability of MTX compared to MMF to produce prior distributions for a future Bayesian trial. Secondary aims were to achieve consensus agreement on critical aspects of a future trial.

Results: An international group of 12 clinical experts participated. Opinion suggested superior efficacy and tolerability of MMF compared to MTX; where most likely value of efficacy of MMF was 0.70 (95% confidence interval (CI) 0.34-0.90) and of MTX was 0.68 (95% CI 0.41-0.8). The most likely value of tolerability of MMF was 0.77 (95% CI 0.3-0.94) and of MTX was 0.62 (95% CI 0.32-0.84). The wider CI for MMF highlights that experts were less sure about relative efficacy and tolerability of MMF compared to MTX. Despite using a Bayesian approach, power calculations still produced a total sample size of 240 participants, reflecting the uncertainty amongst experts about the performance of MMF.

Conclusions: Key factors have been defined regarding the design of a future Bayesian approach clinical trial including elicitation of prior opinion of the efficacy and tolerability of MTX and MMF in JLS. Combining further efficacy data on MTX and MMF with prior opinion could potentially reduce the pre-trial uncertainty so that, when combined with smaller trial sample sizes a compelling evidence base is available.

Background: Delirium is a serious and distressing neuropsychiatric condition, which is prevalent across all palliative care settings. Hypoactive delirium is particularly common, but difficult to recognize, partly due to overlapping symptoms with depression and dementia. Delirium screening tools can lead to earlier identification and hence better management of patients. The 4AT (4 'A's Test) is a brief tool for delirium detection, designed for use in clinical practice. It has been validated in 17 studies in over 3,700 patients. The test is currently used in specialist palliative care units, but has not been validated in this setting. The aim of the study is to determine the diagnostic accuracy of the 4AT for delirium detection against a reference standard, in hospice inpatients.

Methods: 240 participants will be recruited from the inpatient units of two hospices in Scotland. If a patient lacks capacity to consent, agreement will be sought from a legal proxy. Each participant will complete the 4AT and a reference standard assessment based on the diagnostic delirium criteria in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This will be supplemented by tests of cognition and attention, including reverse days of the week, counting down from 20 to 1, Vigilance 'A', the Observational Scale for Level of Arousal, the modified Richmond Agitation Sedation Scale and the Delirium Rating Scale-Revised-98. The assessments will be conducted in a randomized order by two independent clinicians, who will be blinded to the results until both are complete. Primary outcomes will be the sensitivity and specificity of the 4AT in detecting delirium.

Discussion: The findings will inform clinical practice regarding delirium assessment in palliative care settings.

Trial registration: ISRCTN ISRCTN97417474 (21/02/2020).

Background: Exercise has been shown to be beneficial for people with Parkinson's (PwP), slowing the rate of decline of motor and nonmotor symptoms, with emerging evidence associating exercise with a neuroprotective effect. Current exercise provision is time-limited, and delivered in the absence of strategies to support long-term adherence to exercise. With a growing Parkinson's population, there is a need to develop long-term sustainable approaches to exercise delivery. The primary aim of this study is to assess the feasibility and acceptability of a multicomponent intervention (PDConnect) aimed at promoting physical activity, and self-management for PwP.

Methods: A convergent fixed parallel mixed methods design study will be undertaken. The study aims to recruit 30 PwP, who will be randomly allocated into two groups: (i) the usual care group will receive physiotherapy once a week for six weeks delivered via Microsoft Teams. (ii) The PDConnect group will receive physiotherapy once a week for six weeks which combines exercise, education and behaviour change interventions delivered by NHS Parkinson's specialist physiotherapists via Microsoft Teams. This will be followed by 12 weekly sessions of group exercise delivered on Microsoft Teams by fitness instructors specially trained in Parkinson's. Participants will be then contacted by the fitness instructors once per month for three months by video conferencing to support exercise engagement. Primary feasibility data will be collected during the study, with acceptability assessed via semi-structured interviews at the end. Secondary outcomes encompassing motor, non-motor and health and well-being measures will be assessed at baseline, at six, 18, and 30 weeks.

Discussion: This pilot study will establish whether PDConnect is feasible and acceptable to PwP. This will provide a platform for a larger evaluation to assess the effectiveness of PDConnect at increasing exercise participation and self-management within the Parkinson's Community.

Trial registration: Registered on ISRCTN (ISRCTN11672329, 4^th June 2020).

Background: Improving survival from gynaecological cancers is creating an increasing clinical challenge for long-term distress management. Psychologist-led interventions for cancer survivors can be beneficial, but are often costly. The rise of the Psychological Wellbeing Practitioner (PWP) workforce in the UK might offer a cheaper, but equally effective, intervention delivery method that is more sustainable and accessible. We aimed to test the effectiveness of a PWP co-facilitated intervention for reducing depression and anxiety, quality of life and unmet needs.

Methods: We planned this trial using a pragmatic, non-randomised controlled design, recruiting a comparator sample from a second clinical site. The intervention was delivered over six-weekly sessions; data were collected from participants at baseline, weekly during the intervention, and at one-week and three-month follow-up. Logistical challenges meant that we only recruited 8 participants to the intervention group, and 26 participants to the control group.

Results: We did not find significant, between-group differences for depression, quality of life or unmet needs, though some differences at follow-up were found for anxiety ( p<.001). Analysis of potential intervention mediator processes indicated the potential importance of self-management self-efficacy. Low uptake into the psychological intervention raises questions about (a) patient-driven needs for group-based support, and (b) the sustainability of this intervention programme.

Conclusions: This study failed to recruit to target; the under-powered analysis likely explains the lack of significant effects reported, though some trends in the data are of interest. Retention in the intervention group, and low attrition in the control group indicate acceptability of the intervention content and trial design; however a small baseline population rendered this trial infeasible in its current design. Further work is required to answer our research questions, but also, importantly, to address low uptake for psychological interventions in this group of cancer survivors.

Trial registration: ClinicalTrials.gov, NCT03553784 (registered 14 June 2018).

Background: Anaemia is common in hospice populations and associated with significant symptom burden. Guidelines recommend investigating for and treating iron deficiency (ID), but there is little evidence of this practice in palliative care populations. This report describes the results of investigations for and subsequent management of ID in a UK hospice.

Methods: This is a descriptive study of routine clinical data. Laboratory and clinical records were reviewed retrospectively for 12 months following the implementation, in August 2018, of routine investigation for ID amongst patients with clinically relevant anaemia in whom treatment would be considered. Absolute (AID) and functional iron deficiency (FID) were diagnosed using established definitions and treatments recorded.

Results: Iron status was evaluated in 112 cases, representing 25/110 (22.7%) of those with mild, 46/76 (60.5%) moderate and 41/54 (75.9%) severe anaemia. Twenty-eight (25%) were defined as having AID, 48 (42.8%) FID and 36 (32%) no ID. There was a significant difference between groups in symptoms triggering haemoglobin check and diagnosis, with a higher proportion of patients with classic symptoms of anaemia and gastrointestinal malignancy in those with AID. Intravenous iron was given on 12 occasions in the hospice with no major adverse events. Subjective symptom benefit in 7 cases and a statistically significant increase in overall mean haemoglobin were observed.

Conclusions: This report describes the outcome of investigations for iron deficiency in patients with clinically significant anaemia in a UK hospice. Results indicate iron deficiency is common and can be safely treated with intravenous iron replacement, within current guidelines, in a hospice setting. Further research should define the optimum use of this approach in palliative care patients.