Jake joined SHEC as a research fellow in Health Economics in January 2015. As well as working on a number of research studies, he also provides expert advice on Health Economics for the Research Design Service, South East region. Jake has experience ranging from within trial analysis of health economics data for randomised control trials, to decision analytic and disease transmission modelling. Jake provides teaching support for Applied Econometrics modules and Economic Evaluation in Health, MSc modules. Prior to joining SHEC, Jake worked as a health economist within the HERG team at Brunel University London. He holds an MSc in Health Economics from City University London and a first class BSc (Hons) in Economics from Surrey University. As well as a current career in Health economics, Jake has extensive experience in the private sector specialising in Project Management and business analysis at American Express.
Background: As more men survive a diagnosis of prostate cancer, alternative models of follow-up care that address men?s enduring unmet needs and are economical to deliver are needed. This paper describes the protocol for an ongoing evaluation of a nurse-led supported self-management and remote surveillance programme implemented within the secondary care setting.
Methods/design: The evaluation is taking place within a real clinical setting, comparing the outcomes of men enrolled in the Programme with the outcomes of a pre-service change cohort of men, using a repeated measures design. Men are followed up at four and eight months post recruitment on a number of outcomes, including quality of life, unmet need, psychological wellbeing and activation for self-management. An embedded health economic analysis and qualitative evaluation of implementation processes are being undertaken.
Discussion: The evaluation will provide important information regarding the effectiveness, cost effectiveness and implementation of an integrated supported self-management follow-up care pathway within secondary care.
suggests that benefit is not sustained.
Objectives: (1) Implement a specialist domiciliary rehabilitation service for people with Parkinson?s and
carers. (2) Provide continuing support from trained care assistants to half receiving the rehabilitation.
(3) Evaluate the clinical effectiveness of the service, and the value added by the care assistants, compared
with usual care. (4) Assess the costs of the interventions. (5) Investigate the acceptability of the service.
(6) Deliver guidance for commissioners.
Design: Pragmatic three-parallel group randomised controlled trial.
Setting: Community, county of Surrey, England, 2010?11.
Participants: People with Parkinson?s, at all stages of the disease, and live-in carers.
Interventions: Groups A and B received specialist rehabilitation from a multidisciplinary team
(MDT) ? comprising Parkinson?s nurse specialists, physiotherapists, occupational therapists, and speech
and language therapists ? delivered at home, tailored to individual needs, over 6 weeks (about 9 hours?
individual therapy per patient). In addition to the MDT, participants in group B received ongoing support
for a further 4 months from a care assistant trained in Parkinson?s (PCA), embedded in the MDT
(1 hour per week per patient). Participants in control group (C) received care as usual (no co-ordinated
MDT or ongoing support).
Main outcome measures: Follow-up assessments were conducted in participants? homes at 6, 24 and
36 weeks after baseline. Primary outcomes: Self-Assessment Parkinson?s Disease Disability Scale (patients);
the Modified Caregiver Strain Index (carers). Secondary outcomes included: for patients, disease-specific
and generic health-related quality of life, psychological well-being, self-efficacy, mobility, falls and speech;
for carers, strain, stress, health-related quality of life, psychological well-being and functioning. Results: A total of 306 people with Parkinson?s (and 182 live-in carers) were randomised [group A,
n = 102 (n = 61); group B, n = 101 (n = 60); group C, n = 103 (n = 61)], of whom 269 (155) were analysed
at baseline, pilot cohort excluded. Attrition occurred at all stages. A per-protocol analysis [people with
Parkinson?s, n = 227 (live-in carers, n = 125)] [group A, n = 75 (n = 45); group B, n = 69 (n = 37); group C,
n = 83 (n = 43)] showed that, at the end of the MDT intervention, people with Parkinson?s in group
Background: Care homes are the institutional providers of long-term care for older people. The OPTIMAL
study argued that it is probable that there are key activities within different models of health-care provision
that are important for residents? health care.
Objectives: To understand ?what works, for whom, why and in what circumstances??. Study questions
focused on how different mechanisms within the various models of service delivery act as the ?active
ingredients? associated with positive health-related outcomes for care home residents.
Methods: Using realist methods we focused on five outcomes: (1) medication use and review; (2) use of
out-of-hours services; (3) hospital admissions, including emergency department attendances and length of
hospital stay; (4) resource use; and (5) user satisfaction. Phase 1: interviewed stakeholders and reviewed
the evidence to develop an explanatory theory of what supported good health-care provision for further
testing in phase 2. Phase 2 developed a minimum data set of resident characteristics and tracked their care
for 12 months. We also interviewed residents, family and staff receiving and providing health care to residents.
The 12 study care homes were located on the south coast, the Midlands and the east of England. Health-care
provision to care homes was distinctive in each site.
Findings: Phase 1 found that health-care provision to care homes is reactive and inequitable. The realist
review argued that incentives or sanctions, agreed protocols, clinical expertise and structured approaches to
assessment and care planning could support improved health-related outcomes; however, to achieve change NHS professionals and care home staff needed to work together from the outset to identify, co-design and
implement agreed approaches to health care. Phase 2 tested this further and found that, although there
were few differences between the sites in residents? use of resources, the differences in service integration
between the NHS and care homes did reflect how these institutions approached activities that supported
relational working. Key to this was how much time NHS staff and care home staff had had to learn how to
work together and if the work was seen as legitimate, requiring ongoing investment by commissioners
and engagement from practitioners. Residents appreciated the general practitioner (GP) input and, when
supported by other care home-specific NHS services, GPs reported that it was sustainable and valued work.
Access to dementia expertise, ongoing training and support was essential to ensure that both NHS and care
home staff were equipped to provide appropriate care.
Limitations: Findings were constrained by the numbers of residents recruited and retained in phase 2 for
the 12 months of data collection.
Conclusions: NHS services work well with care homes when payments and role specification endorse the
importance of this work at an institutional level as well as with individual residents. GP involvement is
important but needs additional support from other services to be sustainable. A focus on strategies that
promote co-design-based approaches between the NHS and care homes has the potential to improve
residents? access to and experience of health care.
Funding: The National Institute for Health Research Health Services and Delivery Research programme.
care home residents have high healthcare needs not fully met by prevailing healthcare models. This study explored how healthcare configuration influences resource use.
a realist evaluation using qualitative and quantitative data from case studies of three UK health and social care economies selected for differing patterns of healthcare delivery to care homes. Four homes per area (12 in total) were recruited. A total of 239 residents were followed for 12 months to record resource-use. Overall, 181 participants completed 116 interviews and 13 focus groups including residents, relatives, care home staff, community nurses, allied health professionals and General Practitioners.
context-mechanism-outcome configurations were identified explaining what supported effective working between healthcare services and care home staff: (i) investment in care home-specific work that legitimises and values work with care homes; (ii) relational working which over time builds trust between practitioners; (iii) care which ?wraps around? care homes; and (iv) access to specialist care for older people with dementia. Resource use was similar between sites despite differing approaches to healthcare. There was greater utilisation of GP resource where this was specifically commissioned but no difference in costs between sites.
Conclusion activities generating opportunities and an interest in healthcare and care home staff working together are integral to optimal healthcare provision in care homes. Outcomes are likely to be better where: focus and activities legitimise ongoing contact between healthcare staff and care homes at an institutional level; link with a wider system of healthcare; and provide access to dementia-specific expertise.
UK deaths due to chronic liver diseases such as cirrhosis have quadrupled over the last 40 years, making this condition now the third most common cause of premature death. Most patients with advanced cirrhosis (end-stage liver disease [ESLD]) develop ascites. This is often managed with diuretics, but if refractory, then the fluid is drained from the peritoneal cavity every 10?14 days by large volume paracentesis (LVP), a procedure requiring hospital admissions. As the life expectancy of patients with ESLD and refractory ascites (if ineligible for liver transplantation) is on average d 6 months, frequent hospital visits are inappropriate from a palliative perspective. One alternative is long-term abdominal drains (LTADs), used successfully in patients whose ascites is due to malignancy. Although inserted in hospital, these drains allow ascites management outside of a hospital setting. LTADs have not been formally evaluated in patients with refractory ascites due to ESLD.
Due to uncertai/nty about appropriate outcome measures and whether patients with ESLD would wish or be able to participate in a study, a feasibility randomised controlled trial (RCT) was designed. Patients were consulted on trial design. We plan to recruit 48 patients with refractory ascites and randomise them (1:1) to either (1) LTAD or (2) current standard of care (LVP) for 12 weeks. Outcomes of interest include acceptability of the LTAD to patients, carers and healthcare professionals as well as recruitment and retention rates. The Integrated Palliative care Outcome Scale, the Short Form Liver Disease Quality of Life questionnaire, the EuroQol 5 dimensions instrument and carer-reported (Zarit Burden Interview) outcomes will also be assessed. Preliminary data on cost-effectiveness will be collected, and patients and healthcare professionals will be interviewed about their experience of the trial with a view to identifying barriers to recruitment.
LTADs could potentially improve end-of-life care in patients with refractory ascites due to ESLD by improving symptom control, reducing hospital visits and enabling some self-management. Our trial is designed to see if such patients can be recruited, as well as to inform the design of a subsequent definitive trial.
ISRCTN, ISRCTN30697116. Registered on 7 October 2015.
Research into interventions to improve health and well-being for older people living in care homes is increasingly common. Health-related quality of life (HRQoL) is frequently used as an outcome measure, but collecting both self-reported and proxy HRQoL measures is challenging in this setting. This study will investigate the reliability of UK care home staff as proxy respondents for the EQ-5D-5L and HowRu measures.
Methods and analysis
This is a prospective cohort study of a subpopulation of care home residents recruited to the larger Proactive Healthcare for Older People in Care Homes (PEACH) study. It will recruit residents e60 years across 24 care homes and not receiving short stay or respite care. The sample size is 160 participants. Resident and care home staff proxy EQ-5D-5L and HowRu responses will be collected monthly for 3 months. Weighted kappa statistics and intraclass correlation adjusted for clustering at the care home level will be used to measure agreement between resident and proxy responses. The extent to which staff variables (gender, age group, length of time caring, role, how well they know the resident, length of time working in care homes and in specialist gerontological practice) influence the level of agreement between self-reported and proxy responses will be considered using a multilevel mixed-effect regression model.
Ethics and dissemination
The PEACH study protocol was reviewed by the UK Health Research Authority and University of Nottingham Research Ethics Committee and was determined to be a service development project. We will publish this study in a peer-reviewed journal with international readership and disseminate it through relevant national stakeholder networks and specialist societies.
Care home residents are often unable to complete health-related quality of life questionnaires for themselves because of prevalent cognitive impairment. This study compared care home resident and staff proxy responses for two measures, the EQ-5D-5L and HowRU.
A prospective cohort study recruited residents e60 years across 24 care homes who were not receiving short stay, respite or terminal care. Resident and staff proxy EQ-5D-5L and HowRu responses were collected monthly for 3 months. Weighted kappa statistics and intra-class correlation coefficients (ICCs) adjusted for clustering at the care home level were used to measure agreement between resident and proxies for each time point. The effect of staff and resident baseline variables on agreement was considered using a multilevel mixed effect regression model.
117, 109 and 104 matched pairs completed the questionnaires at 1, 2 and 3 months, respectively. When clustering was controlled for, agreement between resident and staff proxy EQ-5D-5L responses was fair for mobility (ICC: 0.29) and slight for all other domains (ICC d 0.20). EQ-5D Index and Quality-Adjusted Life Year scores (proxy scores higher than residents) showed better agreement than EQ-5D-VAS (residents scores higher than proxy). HowRU showed only slight agreement (ICC d 0.20) between residents and proxies. Staff and resident characteristics did not influence level of agreement for either index.
The levels of agreement for EQ-5D-5L and HowRU raise questions about their validity in this population.