A feasibility study of a decision aid to support family carers of people with severe dementia or those towards the end-of-life

BACKGROUND: Advance care planning in dementia does not always happen. As dementia progresses, decisions are often left for family carers to make with professionals. AIM: To test the feasibility and acceptability of the delivery and use of a decision aid for family carers of people with severe dementia or towards the end-of-life. DESIGN: Feasibility study using a before-after design of a paper-based decision aid with family carers of people with severe dementia or towards the end-of-life. Criteria for whether to progress to full evaluation included achieving: 70% recruitment rate of target of 30 people, and retention of 70% at 6 months. Outcome measures at baseline, 3 and 6 months, included: the Decisional Conflict Scale (DCS), Kessler Psychological Distress Scale (K10), EQ5D-5L and Satisfaction with Care at the End of Life (SWC-EOLD). PARTICIPANTS: Twenty-eight family carers were recruited (93% of target), 26 completed baseline assessment and 20 (71%) of those were followed-up at 6 months. RESULTS: Almost all outcomes changed indicating improvement over 6 months. The DCS and K10 scores decreased indicating less decisional conflict and less psychological distress. The decision aid was acceptable, 25% found it very helpful and 55% a little helpful at 6 months. CONCLUSION: We met the success criteria demonstrating this study was feasible and acceptable to carers. Future research should test the effectiveness of the decision aid in a full scale evaluation

Specialist palliative medicine physicians and nurses accuracy at predicting imminent death (within 72 hours) : a short report

Research suggests that clinicians are not very accurate at prognosticating in palliative care. The 'horizon effect' suggests that accuracy ought to be better when the survival of patients is shorter. The aim of this study was to determine the accuracy of specialist palliative care clinicians at identifying which patients are likely to die within 72 hours. In a secondary data analysis of a prospective observational study, specialist palliative care doctors and nurses (in a hospice and a hospital palliative care team) provided survival predictions (yes/no/uncertain) about which patients would die within 72 hours. Survival predictions were obtained for 49 patients. A prediction from a nurse was obtained for 37/49 patients. A prediction from a doctor was obtained for 46/49 patients. In total, 23 (47%)/49 patients actually died within 72 hours of assessment. Nurses accurately predicted the outcome in 27 (73%)/37 cases. Doctors accurately predicted the outcome in 30 (65%)/46 cases. When comparing predictions given on the same patients (27 [55%]/49), nurses were slightly better at recognising imminent death than doctors (positive predictive value (the proportion of patients who died when the clinician predicted death)=79% vs 60%, respectively). The difference in c-statistics (nurses 0.82 vs doctors 0.63) was not significant (p=0.13). Even when patients are in the terminal phase and close to death, clinicians are not very good at predicting how much longer they will survive. Further research is warranted to improve prognostication in this population. [Abstract copyright: © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.

Improving the care of people with dementia in general hospitals: evaluation of a whole-system train the trainer model

Background: There are concerns about the quality of care that people with dementia receive in the general hospital. Staff report a lack of confidence and inadequate training in dementia care. Methods: A train-the-trainer model was implemented across eight acute hospital trusts in London via a large academic health and science network. Impact was evaluated using mixed methods. Data was collected at (a) Individual level: ‘Sense of Competence in Dementia Care’ (SCID) (b) Ward level: Person Interaction and Environment (PIE) observations (c) Organisation level: use of specific tools i.e. “This Is Me”, (d) Systems level: numbers and types of staff trained per trust. Results were analysed with descriptive statistics and paired t-test with thematic framework analysis for PIE observations. Results: Number of staff trained per trust ranged from 67 to 650 (total 2,020). 1,688 (85%) baseline questionnaires and 456 (27%) 3 month follow-up questionnaires were completed. Mean SCID score was 43.2 at baseline and 50.7 at follow-up (paired t-test, p<0.001). All sub-scales showed a small increase in competence, the largest being for ‘building relationships’. Organisational level data suggested increased use of carer’s passport, “This Is Me” documentation, dementia information leaflets, delirium screening scales and pathways. PIE observations demonstrated improved staff-patient interactions but little change in hospital environments. Conclusions: There was a significant improvement in staffs’ sense of competence in dementia care and the quality of interactions with patients. More hospitals adopted person centred tools and pathways. Work is required to investigate if these changes improve hospital outcomes for people with dementia

How effective is virtual reality technology in palliative care? A systematic review and meta-analysis

BACKGROUND: The efficacy of virtual reality for people living with a terminal illness is unclear. AIM: To determine the feasibility and effectiveness of virtual reality use within a palliative care setting. DESIGN: Systematic review and meta-analysis. PROSPERO (CRD42021240395). DATA SOURCES: Medline, Embase, AMED, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials and Web of Science were searched from inception to March 2021. Search terms included 'virtual reality' and 'palliative care'. Eligibility: (1) adult (>18 years old) with a terminal illness (2) at least one virtual reality session and (3) feasibility data and/or at least one patient outcome reported. The ROB-2 and ROBINS tools assessed risk of bias. The Grading of Recommendations, Assessment, Development and Evaluations (GRADE) tool assessed the quality of the evidence. Standardised mean differences (Hedges's g) were calculated from the pre- and post-data. A DerSimonian-Laird random effects model meta-analysis was conducted. RESULTS: Eight studies were included, of which five were in the meta-analysis. All studies had at least some concern for risk of bias. Virtual reality statistically significantly improved pain (p = 0.0363), tiredness (p = 0.0030), drowsiness (p = 0.0051), shortness of breath (p = 0.0284), depression (p = 0.0091) and psychological well-being (p = 0.0201). The quality of the evidence was graded as very low due to small sample sizes, non-randomisation methods and a lack of a comparator arm. CONCLUSIONS: Virtual reality in palliative care is feasible and acceptable. However, limited sample sizes and very low-quality studies mean that the efficacy of virtual reality needs further research

Exploring how family carers of a person with dementia manage pre-death grief: A mixed methods study

Objectives: Many family carers of a person with dementia experience pre-death grief. We aimed to identify strategies that help carers manage pre-death grief. We hypothesised that emotion and problem focussed styles would be associated with lower, and dysfunctional coping with higher grief intensity. Methods: Mixed methods observational study using structured and semi-structured interviews with 150 family carers of people with dementia living at home or in a care home. Most participants were female (77%), caring for a parent (48%) or partner/spouse (47%) with mild (25%), moderate (43%) or severe (32%) dementia. They completed the Marwit-Meuser Caregiver Grief Inventory Short Form and the Brief Coping Orientation to Problems Experienced (Brief-COPE) questionnaire. We asked carers to identify strategies used for managing grief. We recorded field notes for 150 interviews and audio-recorded additional interviews with a sub-sample of 16 participants. Results: Correlations indicated that emotion-oriented coping was associated with lower grief (R = −0.341), and dysfunctional coping with higher grief (R = 0.435), with a small association with problem-focused strategies (R = −0.109), partly supporting our hypothesis. Our qualitative themes broadly match the three Brief-COPE styles. Unhelpful strategies of denial and avoidance align with dysfunctional coping strategies. Psychological strategies (including acceptance and humour) and seeking support were consistent with emotion-focused strategies, but we did not identify a theme relating to problem-focused strategies. Conclusion: Most carers identified multiple strategies for processing grief. Carers could readily identify supports and services that they found helpful for managing pre-death grief, yet current services appear under-resourced to meet growing demand. (ClinicalTrials.gov ID: NCT03332979)

The accuracy of clinician predictions of survival in the Prognosis in Palliative care Study II (PiPS2): A prospective observational study

BACKGROUND: Prognostic information is important for patients with cancer, their families, and clinicians. In practice, survival predictions are made by clinicians based on their experience, judgement, and intuition. Previous studies have reported that clinicians' survival predictions are often inaccurate. This study reports a secondary analysis of data from the Prognosis in Palliative care Study II (PiPS2) to assess the accuracy of survival estimates made by doctors and nurses. METHODS AND FINDINGS: Adult patients (n = 1833) with incurable, locally advanced or metastatic cancer, recently referred to palliative care services (community teams, hospital teams, and inpatient palliative care units) were recruited. Doctors (n = 431) and nurses (n = 777) provided independent prognostic predictions and an agreed multi-professional prediction for each patient. Clinicians provided prognostic estimates in several formats including predictions about length of survival and probability of surviving to certain time points. There was a minimum follow up of three months or until death (whichever was sooner; maximum follow-up 783 days). Agreed multi-professional predictions about whether patients would survive for days, weeks or months+ were accurate on 61.9% of occasions. The positive predictive value of clinicians' predictions about imminent death (within one week) was 77% for doctors and 79% for nurses. The sensitivity of these predictions was low (37% and 35% respectively). Specific predictions about how many weeks patients would survive were not very accurate but showed good discrimination (patients estimated to survive for shorted periods had worse outcomes). The accuracy of clinicians' probabilistic predictions (assessed using Brier's scores) was consistently better than chance, improved with proximity to death and showed good discrimination between groups of patients with different survival outcomes. CONCLUSIONS: Using a variety of different approaches, this study found that clinicians predictions of survival show good discrimination and accuracy, regardless of whether the predictions are about how long or how likely patients are to survive. Accuracy improves with proximity to death. Although the positive predictive value of estimates of imminent death are relatively high, the sensitivity of such predictions is relatively low. Despite limitations, the clinical prediction of survival should remain the benchmark against which any innovations in prognostication are judged. STUDY REGISTRATION: ISRCTN13688211. http://www.isrctn.com/ISRCTN13688211

LiGHT trial: 6-year results of primary selective laser trabeculoplasty versus eye drops for the treatment of glaucoma and ocular hypertension

PURPOSE: The LiGHT trial has shown selective laser trabeculoplasty (SLT) to be clinically and cost-effective as a primary treatment of open-angle glaucoma (OAG) and ocular hypertension (OHT) at 3 years. This paper reports health-related quality of life (HRQL) and clinical effectiveness of initial treatment with SLT compared to intra-ocular pressure (IOP) lowering eye drops, after 6 years of treatment. DESIGN: Prospective multicentre randomized controlled trial. PARTICIPANTS: Treatment-naïve eyes with OAG or OHT, initially treated with SLT or IOP-lowering drops. METHODS: Patients were randomly allocated to initial SLT or eye drops. Eye specific target IOP and monitoring intervals were based on international guidelines. After the initial 3 years of the trial, patients in the SLT arm were permitted a 3rd SLT if necessary; patients in the drops arm were allowed SLT as a treatment switch or escalation. Analysis was by intention to treat. This study is registered at controlled-trials.com (ISRCTN32038223). MAIN OUTCOME MEASURES: The primary outcome was HRQL at 6 years; secondary outcomes were clinical effectiveness and safety. RESULTS: Of the 692 patients completing 3 years in the LiGHT trial, 633 (91.5%) entered the extension and 524 patients completed 6 years in the trial (82.8% of those entering the extension phase, 73% of those initially randomised). At 6 years, there were no significant differences in HRQL for EQ-5D, GUI and GQL-15 (all p>0.05). The SLT arm had better GSS scores than the drops arm (83.6 (SD 18.1) vs 81.3 (SD 17.3), respectively). 69.8% of eyes in the SLT arm remained at or below target IOP without the need for medical or surgical treatment. More eyes in the drops arm exhibited disease progression (26.8% vs 19.6%, respectively, p=0.006). Trabeculectomy was required in 32 eyes in the drops arm compared to 13 eyes in the SLT arm (p<0.001); there were more cataract surgeries in the drops arm (95 compared to 57 eyes, p=0.03). There were no serious laser-related adverse events. CONCLUSIONS: SLT is a safe treatment for OAG and OHT, providing better long-term disease control than initial drop therapy, with reduced need for incisional glaucoma and cataract surgery over 6 years

How effective is virtual reality technology in palliative care? A systematic review and meta-analysis

How effective is virtual reality technology in palliative care? A systematic review and meta-analysis Show all authors Jiping Mo, Victoria Vickerstaff, Ollie Minton, ... First Published May 30, 2022 Review Article https://doi.org/10.1177/02692163221099584 Article information Article has an altmetric score of 17 No Access Article Information Article first published online: May 30, 2022 Jiping Mo1, Victoria Vickerstaff2, 3, Ollie Minton4, Simon Tavabie5, Mark Taubert6, 7, Patrick Stone2, Nicola White2 1UCL Division of Psychiatry, London, UK 2Marie Curie Palliative Care Research Department, UCL Division of Psychiatry, London, UK 3Priment Clinical Trials Unit, Research Department of Primary Care and Population Health, University College London (UCL), London, UK 4Sussex Cancer Centre University Hospitals, Sussex, UK 5St Joseph’s Hospice, Hackney, UK 6Palliative Medicine, Velindre Cancer Centre, Cardiff, UK 7Palliative Care, Cardiff University School of Medicine, Cardiff, UK Corresponding Author: Nicola White, Marie Curie Palliative Care Research Department, UCL Division of Psychiatry, 6th Floor, Wing B, Maple House, 149 Tottenham Court Road, London W1T 7NF, UK. Email: [email protected] Abstract Background: The efficacy of virtual reality for people living with a terminal illness is unclear. Aim: To determine the feasibility and effectiveness of virtual reality use within a palliative care setting. Design: Systematic review and meta-analysis. PROSPERO (CRD42021240395). Data sources: Medline, Embase, AMED, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials and Web of Science were searched from inception to March 2021. Search terms included ‘virtual reality’ and ‘palliative care’. Eligibility: (1) adult (>18 years old) with a terminal illness (2) at least one virtual reality session and (3) feasibility data and/or at least one patient outcome reported. The ROB-2 and ROBINS tools assessed risk of bias. The Grading of Recommendations, Assessment, Development and Evaluations (GRADE) tool assessed the quality of the evidence. Standardised mean differences (Hedges’s g) were calculated from the pre- and post-data. A DerSimonian-Laird random effects model meta-analysis was conducted. Results: Eight studies were included, of which five were in the meta-analysis. All studies had at least some concern for risk of bias. Virtual reality statistically significantly improved pain (p = 0.0363), tiredness (p = 0.0030), drowsiness (p = 0.0051), shortness of breath (p = 0.0284), depression (p = 0.0091) and psychological well-being (p = 0.0201). The quality of the evidence was graded as very low due to small sample sizes, non-randomisation methods and a lack of a comparator arm. Conclusions: Virtual reality in palliative care is feasible and acceptable. However, limited sample sizes and very low-quality studies mean that the efficacy of virtual reality needs further research

Primary Selective Laser Trabeculoplasty for Open-Angle Glaucoma and Ocular Hypertension: Clinical Outcomes, Predictors of Success, and Safety from the Laser in Glaucoma and Ocular Hypertension Trial.

PURPOSE: To report clinical efficacy, predictors of success, and safety of primary selective laser trabeculoplasty (SLT) used in treatment-naive patients with open-angle glaucoma (OAG) or ocular hypertension (OHT). DESIGN: Post hoc analysis of a multicenter, prospective, randomized, controlled trial. PARTICIPANTS: Treatment-naive patients with OAG or OHT. METHODS: Patients randomized to SLT or topical medication and treated to predefined target intraocular pressures (IOPs) requiring ≥20% IOP reduction from baseline for all disease severity levels. OUTCOME MEASURES: Initial (early) absolute IOP-lowering at 2 months. Achievement of drop-free disease-control: meeting target IOP without disease progression or need for additional topical medication over 36 months after SLT. Predictors of early absolute IOP-lowering and drop-free disease-control after single initial SLT. Frequency of laser-related complications. RESULTS: A total of 611 eyes (195 OHT and 416 OAG) of 355 patients received SLT, and 622 eyes (185 OHT and 437 OAG) of 362 patients received topical medication at baseline. Early absolute IOP-lowering after SLT was no different between OHT and OAG eyes (adjusted mean difference = -0.05 mmHg; 95% confidence interval [CI], -0.6 to 0.5 mmHg; P = 0.85). No difference was noted in early absolute IOP-lowering between topical medication and primary SLT (adjusted mean difference = -0.1 mmHg; 95% CI, -0.6 to 0.4 mmHg; P = 0.67). Early absolute IOP-lowering with primary SLT was positively associated with baseline IOP (coefficient 0.58; 95% CI, 0.53-0.63; P 5 mmHg from pretreatment IOP) with 1 eye requiring treatment. CONCLUSIONS: Primary SLT achieved comparable early absolute IOP-lowering in OHT versus OAG eyes. Drop-free disease-control was achieved in approximately 75% eyes at 36 months after 1 or 2 SLTs, the majority of these after single SLT. These analyses are exploratory but support primary SLT to be effective and safe in treatment-naive OAG and OHT eyes