Patient/ Family Involvement

Introduction: Written documentation and verbal handovers can be ineffective at communicating the specifics of frail, older patients’ complex functional abilities and support needs. Video-recordings of individual patients may help to convey a patient’s condition in a more nuanced, objective way, potentially improving safety at care transitions. The Isla platform interfaces with electronic health record systems, allowing care providers to capture video-recordings during patient care. We evaluated the acceptability, feasibility, and potential effectiveness of video-based patient records (the Isla platform) for supporting the care of older frail inpatients within the acute hospital setting and at care transitions.

Method: Over a three-month pilot period, a non-randomised, mixed-methods feasibility study of video-based patient records (alongside usual care) was conducted within three elderly medicine wards of a large acute hospital in England. Patient and public involvement and engagement (PPIE) was central to study design and implementation. Participant enrolment figures; semi-structured interview data; and video capture and view metrics were examined within an embedded process evaluation, appraising intervention acceptability amongst patients, carers, and ward staff; barriers and facilitators to intervention implementation; and perceived intervention impacts.

Results: The study enrolled 58 ward staff and 29 patients (56.9%); one patient withdrew. Enrolment figures and early interview analyses indicate apparent acceptability of video-based patient records to patients and carers. Intervention barriers (e.g. patient pain), facilitators (e.g. staff-patient rapport) and potential intervention impacts (e.g. improved person-centred care, team communication) were identified. Modal use-cases for video-recordings were to document patients’ transfers (n=16), mobility (n=13), and eating/drinking supports (n=3); however, view metrics suggested limited engagement with videos once captured.

Conclusion(s): Preliminary findings indicate the acceptability and feasibility of video-based patient records, although several implementation considerations warrant address. Perceived intervention impacts (e.g. improved person-centred care) were promising; although greater engagement with videos is a probable precondition to demonstrating efficacy in future research.

Background: This project is based in the geriatric department of Wye Valley NHS trust which serves Herefordshire and mid-Powys.

Introduction : In frail, older patients, cardiopulmonary(CPR) resuscitation has low rates of success. Lack of appropriately completed ReSPECT forms leads to futile attempts of CPR, repeated readmissions and patient harm. This project aims to improve patient centred advance care planning (ACP), and the quality of their documentation in the ‘clinician recommendations’ section in ReSPECT forms through development of new educational tools.

Methods: The Supportive and Palliative Care Indicator Tool (SPICT) was used to identify patients benefitting from ACP in the department. Data was collected on how many patients had ReSPECT forms and how well they were completed against standards adapted from the Resuscitation Council guidelines. Plan-Do-Study-Act(PDSA) cycle 1 was completed developing an aide-memoire (ReSPECT tool), and an interactive workshop. PDSA cycle 2 lead to design of the project poster titled ‘Revamp your ReSPECT discussions’ which was displayed on the wards, and shared on social media. PDSA cycle 3 was conducted to measure response and aid direction. Results: PDSA 1 showed 71% patients meeting SPICT criteria had ReSPECT forms. This improved to 82% by PDSA 3. PDSA cycle 1 revealed that only 32% of ReSPECT forms were completed to audit standards, by PDSA 3 this improved to 43%. The project received engagement from the wider healthcare community on Twitter/X where the project poster garnered over 36,600 views and has been shared in the trusts latest issue of safety bites.

Conclusions: Our work led to an improvement in the quality of documentation and illustrated a novel approach to communicating the standards expected when delivering patient-centred ACP. The interest received via social media highlighted the importance of sharing this experience. We plan on building on this success through wider communication of the standards.

Aims

Understanding patients’ wishes regarding CPR before surgery is crucial. This study aims to assess the impact of a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision on anaesthetists' actions during theatre.

Methods

We used WhatsApp, to present a scenario of an 83-year-old with ischemic heart disease, cognitive impairment, and an acute hip fracture. Anaesthetists were asked how they would handle various intraoperative events and whether a prior DNACPR decision would influence their actions.

Results

A total of 74 UK anaesthetists, all but one of them consultants, completed the anonymous survey. A surprising number N=27, (37%) of respondents indicated that prior knowledge of a DNACPR decision would have altered their preparedness to anaesthetise the patient.

Despite a pre-existing DNACPR decision N=68 (92%) stated that they would attempt electrical cardioversion if a patient became hypotensive with a regular broad complex tachycardia, as would N=65 (88%) in response to ventricular fibrillation during surgery. N=36 (49%) would initiate chest compressions in theatre if patient failed to respond to electrical cardioversion, but only N=2 (3%) would continue with intubation, ventilation and discussion with critical care if the patient failed to respond to three cycles of compressions and cardioversion.

Conclusion

It is important for anaesthetists to discuss the nuances of different elements of CPR as part of patients’ pre-operative assessment, as it is much more likely to be successful in theatre than in the ward or community settings that most DNACPR discussions will consider.

Raising the topic of resuscitation can lead to anxiety among patients and their families, Our study has shown that most anaesthetists will set aside a DNACPR decision anyway if problems arise in theatre.

Introduction 

Shared decision making (SDM) is a vital element in ensuring a more personalised approach to care.  The Peri-operative Care of Older People in Surgery (POPS) Team adopts enhanced SDM in frail patients referred for elective urological or colorectal surgery using the BRAN (benefits, risks, alternatives, nothing) approach. In frail populations, there is a complex balance between providing appropriate access to surgery and minimising exposure to potentially harmful procedures. SDM can help to negotiate this balance. This study aimed to evaluate the patient perception of the SDM process.  

Method 

Patients and/or their family proxy attending the POPS clinic between December 2023 – March 2024 were invited to participate in a follow-up telephone interview. The content of the interview was based on the CollaboRATE tool, a quick 3-question, validated questionnaire used for evaluating SDM from the patient’s perspective.  

Results 

Overall, 22 out of 29 (76%) consenting patients and/or their proxy were contactable and well enough to participate in the CollaboRATE evaluation.  

All (n=22, 100%) reported that the POPS team had made ‘a lot’ or ’every’ effort in helping them understand their health issues and listening to what mattered most to them. 86% (n=19) thought they had made ‘a lot’ or ‘every’ effort to include what mattered most to them in deciding what to do next. Patients/proxies were also able to add unstructured comments which were also positive: 

 ‘the staff were excellent - my husband transformed in front of my eyes, he was so happy with the decision.’ 

Conclusion 

The SDM process within the POPS clinic is highly rated and valued by the patients.  Considering that SDM also reduced the number who opted for surgery by 30% (April – July 2023; 9 out of 30 chose not to have surgery), it can offer added value to the individual and the wider system. 

People from ethnic minorities face additional challenges in hospital. These contribute to poorer progress and outcomes. We set out to develop an online resource to help hip fracture teams provide answers to questions commonly posed by people presenting with hip fracture, and to address inequalities in patients’ and their families’ access to information. Method In 2021 we surveyed all 167 hospitals in England, Wales, and Northern Ireland which look after people with hip fracture – to identify which provided printed or digital information, and which made this available in languages appropriate to their local population. Results Most hospitals (70%) claimed that they routinely provided printed information about injury, surgery and recovery, but only 26% could say that they provided this in languages appropriate to their local population. The equivalent figures for digital forms of information were 23% and just 10%. We produced, piloted and finalised an English language template in discussion with people attending our hospital. Initial Google translations of this were circulated to clinicians within our department who were familiar with this patient group and able to read, edit and sign off versions in other languages. We surveyed these editors and 71% described the final document as highly useful. However, nearly two-thirds had identified limitations in the Google draft and 50% reported needing to modify technical elements of the text. One-third (36%) spent more than two hours editing the text to a form they felt would be accessible to patients. Conclusion We would recommend this approach to those working with other conditions and other patient groups, as there is clearly a need for information to meet the needs of the patient. We plan to extend our portfolio of 19 languages (the first languages of >3 million people in the UK alone) in collaboration with clinicians fluent in other languages.

Background

Delirium is associated with psychological and cognitive complications that have impacts beyond the patients. Although family members and carers can play a significant role in the management and recognition of delirium, there is limited research on the experience of family caregivers in the context of delirium. This study aims to explore the needs and experiences of family caregivers for a person with delirium and offer suggestions to support them.

Method

A qualitative interview study with family caregivers of persons with delirium. Data were analysed using an abductive analysis approach.

Results

Fourteen family caregivers were interviewed. Carers explained their feeling of responsibility to support their loved ones with delirium, however, they perceived their caregiving role negatively because of increasing demands and the lack of sufficient support. Carers attributed their emotional exhaustion and distress to the onset of delirium, change in the personality of the person with delirium, confusion and progression of delirium. Additionally, carers indicated the negative impact of caregiving on the quality of the relationship between them and person with delirium. This highlights the need to enhance the support provided to carers to mitigate the emotional and relationship impact of caregiving on the carer. We identified needs of carers for people with delirium including: education on delirium, reassurance, information on care pathways and support from formal carers to take breaks.

Conclusions

Viable solutions to assist family caregivers include more support for the carer in formulating care plans for people with delirium, development of support groups for family caregivers of people with delirium, and a case worker. These solutions may help to decrease re-hospitalisation and admission to care homes. Future research should focus on approaches to better support carers of people with delirium, and to shift the care plan from person-centred into person and family-centred approach.

Introduction:

The preference for place of death and the concept of dying in place have been subjects of debate in numerous jurisdictions. Despite the growing prevalence of ageing populations and the increasing demand for dying in place, there is a limited body of literature exploring older adults’ knowledge of dying in place and their preferences for the place of death. In Hong Kong, there are ongoing legislative efforts to revise the policy on dying in place. This study aims to investigate the knowledge of dying in place and the preferences for the place of death among older adults in Hong Kong.

Methods:

This cross-sectional study recruited 503 older adults. A questionnaire was disseminated through online social media platforms and face-to-face interview. ANOVA was conducted to compare the differences in knowledge scores among participants with varying preferences for the place of death.

Results:

Participants demonstrated a sub-optimal knowledge level (mean = 3.55; range 0-8). Notably, 54.7% of participants were unware of the existing law that regulates dying in place in Hong Kong, and 43.5% did not know about the availability of community resources to support patients who choose to die at home. The majority of participants (55.5%) preferred to die at home. Other preferences included hospital (18.9%), hospice (17.1%), and care home (8.5%). Participants who preferred to die at home exhibited a higher knowledge score (mean 3.84) compared to those who preferred to die in hospital (mean = 2.79) (F = 5.323, p = 0.001).

Conclusions:

The findings of this study provide insights that can inform the revision of current policies, the enhancement of community resources supporting dying in place, and the strengthening of life and death education targeted at older adults.

Acknowledgement:

The work described in this paper was fully supported by a fund from Hong Kong Metropolitan University (RD/2022/2.17).

INTRODUCTION Dementia in Parkinsons is common and under-recognised with a significant impact on person and their carer. Contrary to other services, Cardiff and Vale Parkinson's services run an integrated Parkinson's clinic where People with Parkinsons (PwP) developing dementia continue to be managed by the same clinical team.

METHODOLOGY An review of 425 patients diagnosed with dementia with a background of Parkinson's over last 10 years was undertaken. A random sample of 50 patients assessed for demographics, duration of Parkinson's, presentation of dementia and outcomes including place of residence and mortality data. RESULT Of 50 patients, the majority were male (28) with mean age of 75 years. The mean duration of Parkinson's prior to diagnosis of dementia was 6 years and from PD Dementia to death 3 years. The Median Clinical Frailty score on the diagnosis of dementia was 5. Pre-dementia diagnosis, there were no patients in care settings with 50% independently living at home, and the other half dependent on care support. Following dementia diagnosis, only 1 patient was living independently at home, with 19/50 (38%) in care facilities and 30/50 (60%) living at home with support. There was a trend towards increasing hospital admissions and increased need for support from the Parkinson's team following dementia diagnosis (pre-diagnosis 24 admissions, post-diagnosis 31 admissions) increased contact to Parkinson's team (323 versus 360).

CONCLUSION The onset of dementia appears to mark a significant shift in disease burden resulting in an increased rate of institutionalisation and care needs. The trend towards increasing hospital admissions in this cohort alongside increasing contact with the care team reflects increasing frailty, carer and disease burden. The onset of dementia should be a trigger for clinicians and service providers to proactively plan for future care provision. This needs further evaluation and we are analysing our wider sample currently.

Introduction
Non motor symptoms (NMS) management in Parkinson disease is crucial part of the comprehensive management and have significant impact on the care and the quality of life. However, there are limitations in assessing non motor symptoms given the complexity of the symptoms , time constraint in the clinic setting and major emphasis being the motor symptoms.

Objective
To improve the assessment of non-motor symptoms in movement disorder clinics for the comprehensive and personalised management of patients with Parkinson disease. Service Development PD non-motor symptoms Questionnaire was introduced to the movement disorder clinics. Patients attended were asked to fill the questions in advance just before the clinic time or the questions being sent out in the post alongside the clinic appointment letter.

Results
Data collected from the movement disorder clinics before and after the intervention. Twenty unselected patients from before the intervention and twenty after the intervention were reviewed. Data showed that non motor symptoms such as falls, urinary symptoms , sleep and memory were well acknowledged before the intervention. However , there is improvement in recognition of the other non-motor symptoms after the intervention although there is still room for improvement. Further plan 1. Continue encouragement of using the NMS questionnaire and recognising the non-motor symptoms and early intervention for the comprehensive, personalised management of patients with Parkinson disease and to improve the quality of life. 2. Liaison with the secretaries to send out the NMS questionnaires to follow up patients routinely with clinic appointment letters. 3. Aim to re audit in 6 months’ time. 4. Gather patient feedback on satisfaction of non-motor symptoms recognition and getting addressed with intervention.

“I would imagine it needed a review…” A qualitative study exploring the experiences of people with dementia and their informal carers of long-term condition reviews in primary care

Introduction

Multimorbidity is common for people with dementia (PWD) and is associated with increased healthcare utilisation and poorer outcomes. Part of the management of long-term conditions (LTCs) occurs through annual LTC reviews conducted in primary care. Little is known about the experiences or needs of people with dementia and informal carers in regard to LTC reviews.

Aim

To explore the experiences of PWD and their informal carers of the review and management of LTCs in primary care.

Method

Qualitative research study, protocol informed by discussion with people with lived experience as an informal carer. Institutional ethical approval (ref ETH2122-1035, University of East Anglia) was granted 25/3/2022. Semi-structured interviews were conducted with PWD and informal carers recruited through Join Dementia Research and local (to Norfolk, UK) charities. Thematic analysis was undertaken with reference to Braun and Clarke (2006).

Results

16 participants were interviewed: two PWD, 10 informal carers and two informal care/PWD dyads. Our findings fall into four main themes: 1) What matters to people; medication optimisation and holistic care 2) What is a review; the diversity of experiences 3) The importance of communication and 4) Preference for shared decision making.

Conclusion

Consideration should be given to ensuring patients and carers are aware when a LTC review will take place and providing an opportunity to be involved, thus allowing shared decision making and patient centred care. Further research into the clinician experience and their views on patients’ needs and how to meet them is required to inform how LTC reviews for people with dementia can be optimised.