Embedding formal and experiential public and patient involvement training in a structured PhD programme: process and impact evaluation.

BACKGROUND: Incorporating Public and Patient Involvement (PPI) into doctoral research is valued by PhD funders and scholars. Providing early career researchers with appropriate training to develop skills to conduct meaningful PPI involvement is important. The Health Research Board (HRB) Collaborative Doctoral Award in MultiMorbidity programme (CDA-MM) embedded formal PPI training in its structured education. The four participating PhD scholars established a PPI panel comprising people living with two or more chronic conditions, presenting an opportunity for experiential PPI training. This study aimed to evaluate the process and impact of embedding PPI training in a structured PhD programme. METHODS: This study was a longitudinal mixed-methods evaluation, conducted over 24 months (June 2020 to June 2022). A process evaluation provided an understanding of how PPI was embedded and explored the experiences of key stakeholders involved. An impact evaluation assessed the impact of embedding PPI training in the programme. Participants included PhD scholars, PPI contributors and PhD supervisors. The data collection and analysis was led by an independent researcher not aligned with the CDA-MM. Data collection methods included five focus groups, individual interviews (n = 6), an impact log, activity logs and group reflections. Qualitative data were analysed using thematic and content analysis and quantitative data analysed using descriptive statistics. RESULTS: Embedding formal and experiential PPI training in a structured PhD programme is feasible. Both approaches to training are fundamental to building PPI capacity. Involvement of an experienced and knowledgeable PPI lead throughout is perceived as critical. The PPI panel approach offered a good example of embedded consultation and worked well in a structured PhD programme, providing PhD scholars with ample opportunities for learning about PPI and its implementation. For PPI contributors, culture was the most important indicator of quality and was positively evaluated. Key roles for PhD supervisors were identified. Embedding formal and experiential PPI training impacted positively on many different aspects of individual PhD research projects and on PhD scholars as researchers. There were positive impacts for PPI contributors and PhD supervisors. CONCLUSIONS: Embedding formal and experiential PPI training in a structured PhD programme is a novel approach. The evaluation has identified a number of lessons that can inform future doctoral programmes seeking to embed formal and experiential PPI training.

Four PhD scholars participated in the CDA-MM. They received training and support from a PPI lead on how to conduct PPI in research. They established a PPI panel of people with two or more ongoing health conditions, to enable PhD scholars to get input from PPI contributors and learn how to do PPI well. An evaluation study was conducted to explore how the PhD scholars conducted PPI, how well it worked, the difference it made and to identify messages for PhD scholars wishing to involve PPI contributors. For the evaluation, the PPI contributors, PhD scholars and PhD supervisors were asked about their experiences and views. For many of the PPI contributors, being part of the CDA-MM PPI panel was their first experience of being involved in PPI. The ongoing support they received from PhD scholars was important. For them, relationships and the way that meetings are conducted matter for doing PPI well. They liked working in small groups and on concrete issues. They found the time they were expected to give was reasonable and within acceptable limits. They preferred in-person meetings. According to PPI contributors, when PPI is done well, it has benefits for the research, particularly ensuring that plain language is used and jargon avoided when researchers communicate with people with two or more ongoing health conditions. PhD scholars benefit from getting the patient perspective and learning how to communicate their research to patients. PPI contributors benefit in many different ways. Some PPI contributors argued that the PPI advisory panel worked so well in the CDA-MM that no changes were needed, whereas others would like to explore different ways of being involved in research.

A protocol for the evaluation of the process and impact of embedding formal and experiential Public and Patient Involvement training in a structured PhD programme.

BACKGROUND: Incorporating Public and Patient Involvement (PPI) into doctoral research is valued by PhD scholars. The importance of providing early career researchers with appropriate education and training to develop skills to conduct meaningful involvement has been articulated. The Collaborative Doctoral Award in MultiMorbidity (CDA-MM) PhD programme embedded formal PPI training as a postgraduate education component. Four PhD scholars taking part in the CDA-MM established a PPI panel comprising people, and carers of people, living with multimorbidity (≥2 chronic conditions), presenting an opportuning for experiential PPI training. The proposed study aims to evaluate the process and impact of formal and experiential PPI training during a PhD programme. DESIGN: Embedding PPI training in a PhD programme is a novel approach. This evaluation will include a process evaluation to provide an understanding of the workings of the PPI panel and explore the experiences of key stakeholders involved, and an impact evaluation to assess the impact of embedding PPI training in a PhD programme. This study is a longitudinal mixed-methods evaluation, conducted over 24 months. Participants include PhD scholars, PPI contributors and PhD supervisors. An independent researcher not aligned with the CDA-MM will lead the evaluation. Data collection methods include focus groups, individual interviews, an impact log and group reflections. Qualitative data will be analysed using thematic and content analysis and quantitative data will be analysed using descriptive statistics. DISCUSSION: This evaluation will report the learnings from embedding formal and experiential PPI training and education across a PhD programme.

Endotracheal tube manipulation during cardiopulmonary resuscitation in the neonatal intensive care unit.

OBJECTIVES: We sought to describe the approach to and impact of endotracheal tube (ETT) placement for cardiopulmonary resuscitation (CPR) occurring in the neonatal intensive care unit (NICU). STUDY DESIGN: A retrospective review of in-NICU CPR from 2012 to 2017 across ten NICUs in San Antonio, Texas. RESULTS: Of 209 CPR events, 22 (10.5%) patients required ETT placement at CPR onset, 23 (11%) had an existing ETT removed and replaced, and 8 (3.4%) both. We found no association between time without an ETT tube during CPR and time to return of spontaneous circulation (ROSC) or rate of ROSC. We found no documented use of a laryngeal mask airway during in-NICU CPR. CONCLUSIONS: For CPR occurring in the NICU, the achievement of ROSC or time to ROSC is not impacted by the need to place an initial AA at the onset of CPR in this contemporary cohort.

Intensive home care supports, informal care and private provision for people with dementia in Ireland.

BACKGROUND: This study analysed the cost of intensive home care packages for people with dementia living on the boundary of home care and residential care facilities in Ireland. The cost of community-based services and supports, including informal care and private out-of-pocket expenditure, was compared to the cost of public and private residential care. METHODS: The study recruited 42 people with dementia and/or their caregivers, who were living on the boundary of home care and residential care, to an in-depth study on the cost of care. The Resource Utilization in Dementia scale was used to collect data on the utilization of standard formal care and informal care by people with dementia in receipt of an intensive home care package. Information on private out-of-pocket expenditure on care was also collected. Unit costs were assigned and community-based care was compared with public and private residential care alternatives. RESULTS: The average weekly cost of home care, including the intensive home care package, standard formal community care provision, medications, consumption and housing, was estimated at €1127. This is lower than the average weekly cost of public long-stay care facilities (€1526) and around the same as for private nursing home fees in the Dublin region (€1149). When the opportunity cost valuation of informal care is included, the cost of home care is higher than all types of residential care. Adding private care expenditure further inflates the cost of home care. CONCLUSION: Keeping highly dependent people with dementia living at home is not cheap and raises questions about optimal resource allocation on the boundary of home care and residential care. Even with significant public spending on intensive home care packages, family care costs remain high. So too does private out-of-pocket expenditure on care for some people with dementia.

Effect on metabolic bone disease markers in the neonatal intensive care unit with implementation of a practice guideline.

OBJECTIVES: To determine the effect of implementing a 2015 policy for the screening, prevention, and management of metabolic bone disease for very low birth weight (VLBW) infants in two Level IV NICUs. STUDY DESIGN: Retrospective cohort study of VLBW infants in the 2 years prior to (2013-2014) and after (2016-2017) policy implementation. RESULTS: We identified 316 VLBW infants in 2013-2014 and 292 in 2016-2017 who met study criteria. After policy implementation, vitamin D supplementation began earlier (20.1 ± 15.5 days vs 30.2 ± 20.1 days, p < 0.0005), the percentage of infants with alkaline phosphatase obtained increased (89.7% vs 76.3%, p < 0.0005), while the percentage of infants with alkaline phosphatase >800 IU/L (11.7 vs 4.5%, p = 0.0001) and phosphorous <4 mg/dL (14.2% vs 7.9%, p = 0.014) fell significantly. CONCLUSIONS: After policy implementation, vitamin D supplementation began significantly earlier and the rate of detecting abnormal biochemical markers of metabolic bone disease decreased significantly.

Intensive home care packages for people with dementia: a realist evaluation protocol.

BACKGROUND: Dementia presents a significant challenge to health systems and to the person and family affected. Home care is increasingly seen as a key service in addressing this challenge in a person-centred and cost-effective way. Intensive Home Care Packages (IHCPs) were introduced in Ireland to provide personalised and high levels of support for people with dementia to remain at home or be discharged home from hospital, and to build on the work of the HSE & Genio Dementia Programme. This realist evaluation is concerned with real world questions of feasibility and effectiveness; specifically understanding in what ways IHCPs work, how optimum outcomes are achieved, for whom and in what contexts do IHCPs work best. METHODS: A mixed-method, multi-stakeholder study was designed within a realist evaluation conceptual framework. The process evaluation includes semi-structured interviews with health service staff at all levels, social network analysis and secondary database analysis; the outcomes evaluation includes quantitative measures and qualitative data collected through in-depth interviews with people with dementia and family carers; and the cost evaluation includes analysis of data from the Resource Utilisation in Dementia (RUD). The four stage cycle of realist evaluation is adopted, with iterative rounds of theory formulation, data collection and theory testing throughout. DISCUSSION: This realist evaluation of a complex intervention involves a variety of data and perspectives in order to provide confidence in moving from hypothetical constructs about how IHCPs might work to explanations of potential or observable causal mechanisms. In spite of being a key form of service delivery in most healthcare systems, the ways in which home care works to produce the desired outcomes seems to be poorly understood. While there is much descriptive and comparative work, there is a lack of understanding regarding which patient groups might benefit most from home care, or the influence of different service or cultural contexts on outcomes from home care. As well as addressing the core research objectives, this study aims to make a contribution to the underlying theory of home care in ways that can progress our understanding of how outcomes are produced for home care recipients.

Mapping longitudinal studies to risk factors in an ontology for dementia.

A common activity carried out by healthcare professionals is to test various hypotheses on longitudinal study data in an effort to develop new and more reliable algorithms that might determine the possibility of developing certain illnesses. The INnovative, Midlife INtervention for Dementia Deterrence project provides input from a number of European dementia experts to identify the most accurate model of inter-related risk factors which can yield a personalized dementia-risk quotient and profile. This model is then validated against the large population-based prospective Maastricht Aging Study dataset. As part of this overall goal, the research presented in this article demonstrates how we can automate the process of mapping modifiable risk factors against large sections of the aging study and thus use information technology to provide more powerful query interfaces.

A systematic review of the public's knowledge and understanding of Alzheimer's disease and dementia.

This paper reports findings from a systematic review of the literature on the general public's knowledge and understanding of dementia/Alzheimer's disease. The key purpose of the review was to evaluate existing literature with specific attention paid to conceptual and methodological issues and to key findings. Over a 20-year period, 40 published articles satisfied the inclusion criteria. Only 4 of these were qualitative and 5 were cross-national. The review revealed a lack of consistency across studies regarding how knowledge was operationalized, approaches to sampling, response rates, and data collection instruments used including validated scales. A consistent finding across the vast majority of studies was the only fair to moderate knowledge and understanding the general public had. The most common misconception was that dementia was a normal part of aging and there was a lack of clarity about at which point normal age-related memory loss problems become severe enough to indicate dementia. Knowledge of dementia was found to be particularly poor among racial and ethnic minority groups where several myths about causes of dementia were found. Findings point to the need for more educational and advocacy programmes on dementia to be developed particularly in low-income to middle-income countries.

Reducing dementia risk by targeting modifiable risk factors in mid-life: study protocol for the Innovative Midlife Intervention for Dementia Deterrence (In-MINDD) randomised controlled feasibility trial.

BACKGROUND: Dementia prevalence is increasing as populations live longer, with no cure and the costs of caring exceeding many other conditions. There is increasing evidence for modifiable risk factors which, if addressed in mid-life, can reduce the risk of developing dementia in later life. These include physical inactivity, low cognitive activity, mid-life obesity, high blood pressure, and high cholesterol. This study aims to assess the acceptability and feasibility and impact of giving those in mid-life, aged between 40 and 60 years, an individualised dementia risk modification score and profile and access to personalised on-line health information and goal setting in order to support the behaviour change required to reduce such dementia risk. A secondary aim is to understand participants' and practitioners' views of dementia prevention and explore the acceptability and integration of the Innovative Midlife Intervention for Dementia Deterrence (In-MINDD) intervention into daily life and routine practice. METHODS/DESIGN: In-MINDD is a multi-centre, primary care-based, single-blinded randomised controlled feasibility trial currently being conducted in four European countries (France, Ireland, the Netherlands and the UK). Participants are being recruited from participating general practices. Inclusion criteria will include age between 40 and 60 years; at least one modifiable risk factor for dementia risk (including diabetes, hypertension, obesity, renal dysfunction, current smoker, raised cholesterol, coronary heart disease, current or previous history of depression, self-reported sedentary lifestyle, and self-reported low cognitive activity) access to the Internet. Primary outcome measure will be a change in dementia risk modification score over the timescale of the trial (6 months). A qualitative process evaluation will interview a sample of participants and practitioners about their views on the acceptability and feasibility of the trial and the links between modifiable risk factors and dementia prevention. This work will be underpinned by Normalisation Process Theory. DISCUSSION: This study will explore the feasibility and acceptability of a risk profiler and on-line support environment to help individuals in mid-life assess their risk of developing dementia in later life and to take steps to alleviate that risk by tackling health-related behaviour change. Testing the intervention in a robust and theoretically informed manner will inform the development of a future, full-scale randomised controlled trial. TRIAL REGISTRATION: ISRCTN Registry: ISRCTN 98553005 (DOI: 10.1186/ISRCTN98553005).

A national survey of memory clinics in the Republic of Ireland.

BACKGROUND: This national survey investigates the location, resourcing, staff composition, treatments, waiting time, and numbers of patients attending memory clinics (MCs) in the Republic of Ireland. It also explores Directors' attitudes to future service development including their views about the advantages and disadvantages of quality standards for MCs. METHODS: An audio-taped telephone interview was conducted with the Directors. RESULTS: A total of 14 MCs were identified across the Republic of Ireland, ten of which are hospital-based and most of which offer diagnostic services and are located in Dublin. Nine MCs are medical consultant led and operate under the direction of either Old Age Psychiatrists or Geriatricians. Results show wide variation regarding the location, team size, service availability, and numbers of patients attending. The average number of patients attending in 2011 was 126. Only six clinics employ dedicated Allied Health Professionals. Less than half of the clinics are research active. Whilst most Directors welcomed the availability of national standards, several expressed concern that standards might, in the absence of funding, result in the closure of the most poorly resourced services. CONCLUSIONS: This survey provides valuable data on the main characteristics of all of the 14 MCs delivering services in the Republic of Ireland and raises critical and fundamental questions about the goals and outcomes of MC services. The survey data collected can be used by other countries for cross-national comparison.

Estimating the economic and social costs of dementia in Ireland.

Dementia is a costly condition and one that differs from other conditions in the significant cost burden placed on informal caregivers. The aim of this analysis was to estimate the economic and social costs of dementia in Ireland in 2010. With an estimate of 41,470 people with dementia, the total baseline annual cost was found to be over €1.69 billion, 48% of which was attributable to the opportunity cost of informal care provided by family and friends and 43% to residential care. Due to the impact of demographic ageing in the coming decades and the expected increase in the number of people with dementia, family caregivers and the general health and social care system will come under increasing pressure to provide adequate levels of care. Without a significant increase in the amount of resources devoted to dementia, it is unclear how the system will cope in the future.

Reducing acquired infections in the NICU: observing and implementing meaningful differences in process between high and low acquired infection rate centers.

BACKGROUND: Acquired infection is one of the most prevalent sources of concern in neonatal intensive care units (NICUs). Center-to-center variation has been noted by both the National Nosocomial Infection Surveillance System and the Vermont Oxford Network suggesting that site of care influences outcomes including acquired infection. OBJECTIVE: To reduce the acquired infection rate by isolating and then implementing meaningful process differences between high and low infection rate centers. DESIGN/METHOD: A multistaged observation and intervention study. The primary outcome measure was defined as a positive blood culture, collected more than 3 days after birth. Hospital patient days along with infection episodes were collected for all NICU admissions in the network during the baseline and post-implementation periods. A detailed observation guide was used during site visits to high and low infection rate centers. The observations recorded in the guide allowed the team to isolate meaningful differences, which were shared with the network. Individual NICUs decided which of the meaningful differences, if any, to implement. To estimate the impact on costs, additional data were gathered in a case-matched series of infants in one demonstration site. RESULTS: In all, 15 meaningful differences were isolated and shared with the network. The network rate for acquired infection dropped from 3.8 to 2.9 episodes per 1000 patient days. In the demonstration site, the infection rate dropped from 7.4 to 4.0 per 1000 patient days. CONCLUSION: Isolation of process level differences between high and low performing centers followed by implementation of these meaningful differences may reduce acquired infections. Other targeted areas of care may benefit from this quality improvement methodology.