Steven Martin | University of Cambridge (original) (raw)

Book Chapters by Steven Martin

Research paper thumbnail of The APP proteolytic system and its interactions with dynamic networks in Alzheimer’s Disease: (towards systems biology approaches for elucidation of dysregulated networks and early diagnosis and optimisation of health care planning).

In (Juan I. Castrillo and Stephen G. Oliver Eds). Systems Biology of Alzheimer’s disease: Methods and Protocols. MIMB Series Humana, Springer. New York.

Diseases of aging are often complex and multifactorial, involving many genetic and life course mo... more Diseases of aging are often complex and multifactorial, involving many genetic and life course modifi ers. Systems biology is becoming an essential tool to investigate disease initiation and disease progression. Alzheimer's disease (AD) can be used as a case study to investigate the application of systems biology to complex disease. Here we describe approaches to capturing biological data, representing data in terms of networks and interpreting their meaning in relation to the human population. We highlight issues that remain to be addressed both in terms of modeling disease progression and in relating fi ndings to the current understanding of human disease.

Papers by Steven Martin

Research paper thumbnail of Dementia care pathways in prisonsa comprehensive scoping review

Health and Justice, 2024

Background The number of older people in prison is growing. As a result, there will also be more ... more Background The number of older people in prison is growing. As a result, there will also be more prisoners suffering from dementia. The support and management of this population is likely to present multiple challenges to the prison system. Objectives To examine the published literature on the care and supervision of people living in prison with dementia and on transitioning into the community; to identify good practice and recommendations that might inform the development of prison dementia care pathways. Methods A scoping review methodology was adopted with reporting guided by the PRISMA extension for scoping reviews checklist and explanation. Results Sixty-seven papers were included. Most of these were from high income countries, with the majority from the United Kingdom (n = 34), followed by the United States (n = 15), and Australia (n = 12). One further paper was from India. Discussion The literature indicated that there were difficulties across the prison system for people with dementia along the pathway from reception to release and resettlement. These touched upon all aspects of prison life and its environment, including health and social care. A lack of resources and national and regional policies were identified as important barriers, although a number of solutions were also identified in the literature, including the development of locally tailored policies and increased collaboration with the voluntary sector. Conclusion To our knowledge, this is the most comprehensive and inclusive review of the literature on dementia care pathways in prison to date. It has identified a number of important areas of concern and opportunities for future research across the prison system, and its operations. This will hopefully lead to the identification or adaptation of interventions to be implemented and evaluated, and facilitate the development of dementia care pathways in prisons.

Research paper thumbnail of Inequalities and mental health during the Coronavirus pandemic in the UK: a mixed-methods exploration

BMC Public Health , 2023

Background The World Health Organisation declared the novel Coronavirus disease (COVID-19) a glob... more Background The World Health Organisation declared the novel Coronavirus disease (COVID-19) a global pandemic on 11th March 2020. Since then, the world has been firmly in its grip. At the time of writing, there were more than 767,972,961 million confirmed cases and over 6,950,655 million deaths. While the main policy focus has been on controlling the virus and ensuring vaccine roll-out and uptake, the population mental health impacts of the pandemic are expected to be long-term, with certain population groups affected more than others. Conclusions The pandemic is taking a long-term toll on the nations' mental health which will continue to have impacts for years to come. It is therefore crucial to learn the vital lessons learned from this pandemic. Specific as well as whole-government policies need to respond to this, address inequalities and the different needs across the lifecourse and across society, and take a holistic approach to mental health improvement across the UK.

Research paper thumbnail of The mental health experiences of ethnic minorities in the UK during the Coronavirus pandemic: A qualitative exploration

Frontiers in Public Health , 2022

Background: Worldwide, the Coronavirus pandemic has had a major impact on people’s health, lives,... more Background: Worldwide, the Coronavirus pandemic has had a major impact on people’s health, lives, and livelihoods. However, this impact has not been felt equally across various population groups. People from ethnic minority backgrounds in the UK have been more adversely aected by the pandemic, especially in terms of their physical health. Their mental health, on the other hand, has received less attention. This study aimed to explore the mental health experiences of UK adults from ethnic minorities during the Coronavirus pandemic. This work forms part of our wider long-term UK population study “Mental Health in the Pandemic.”
Methods: We conducted an exploratory qualitative study with people from ethnic minority communities across the UK. A series of in-depth interviews were conducted with 15 women, 14 men and 1 non-binary person from ethnic minority backgrounds, aged between 18 and 65 years old (mean age = 40). We utilized purposefully selected maximum variation sampling in order to capture as wide a variety of views, perceptions and experiences as possible. Inclusion criteria: adults (18+) from ethnic minorities across the UK; able to provide full consent to participate; able to participate in a video- or phone-call interview. All interviews took place via MS Teams or Zoom. The gathered data were transcribed verbatim and underwent thematic analysis following Braun and Clarke carried out using NVivo 12 software.
Results: The qualitative data analysis yielded seven overarching themes: (1) pandemic-specific mental health and wellbeing experiences; (2) issues relating to the media; (3) coping mechanisms; (4) worries around and attitudes toward vaccination; (5) suggestions for support in moving forward; (6) best and worst experiences during pandemic and lockdowns; (7) biggest areas of change in personal life. Generally, participants’ mental health experiences varied with some not being aected by the pandemic in a way related to their ethnicity, some sharing positive experiences and coping strategies (exercising more, spending more time with family, community cohesion), and some expressing negative experiences (eating or drinking more, feeling more isolated, or even racism and abuse, especially toward Asian communities). Concerns were raised around trust issues in relation to the media, the inadequate representation of ethnic minorities, and the spread of fake news especially on social media. Attitudes toward vaccinations varied too, with some people more willing to have the vaccine than others.
Conclusion: This study’s findings highlight the diversity in the pandemic mental health experiences of ethnic minorities in the UK and has implications for policy, practice and further research. To enable moving forward beyond the pandemic, our study surfaced the need for culturally appropriate mental health support, financial support (as a key mental health determinant), accurate media representation, and clear communication messaging from the Governments of the UK.

Research paper thumbnail of Patient and public involvement (PPI) in prisons: the involvement of people living in prison in the research processa systematic scoping review

Health Justice, 2021

Background: Patient and Public Involvement (PPI) in health and social care research is increasing... more Background: Patient and Public Involvement (PPI) in health and social care research is increasingly prevalent and is promoted in policy as a means of improving the validity of research. This also applies to people living in prison and using social care services. Whilst evidence for the effectiveness of PPI was limited and reviews of its application in prisons were not found, the infancy of the evidence base and moral and ethical reasons for involvement mean that PPI continues to be advocated in the community and in prisons. Objectives: To conduct a review of the literature regarding the involvement of people or persons living in prison (PLiP) in health and social care research focused on: (i) aims; (ii) types of involvement; (iii) evaluations and findings; (iv) barriers and solutions; and (v) feasibility of undertaking a systematic review. Methods: A systematic scoping review was undertaken following Arksey and O'Malley's (International Journal of Social Research Methodology 8: 19-32, 2005) five-stage framework. A comprehensive search was conducted involving ten electronic databases up until December 2020 using patient involvement and context related search terms. A review-specific spreadsheet was created following the PICO formula, and a narrative synthesis approach was taken to answer the research questions. PRISMA guidelines were followed in reporting. Results: 39 papers were selected for inclusion in the review. The majority of these took a 'participatory' approach to prisoner involvement, which occurred at most stages during the research process except for more 'higher' level research operations (funding applications and project management), and only one study was led by PLiPs. Few studies involved an evaluation of the involvement of PLiP, and this was mostly PLiP or researcher reflections without formal or independent analysis, and largely reported a positive impact. Barriers to the involvement of PLiP coalesced around power differences and prison bureaucracy.

Research paper thumbnail of Mental health in the pandemic: a repeated cross-sectional mixed-method study protocol to investigate the mental health impacts of the coronavirus pandemic in the UK

BMJ Open, 2021

Introduction: The WHO declared a global pandemic on 11 March 2020. Since then, the world has been... more Introduction: The WHO declared a global pandemic on 11 March 2020. Since then, the world has been firmly in the grip of the COVID-19. To date, more than 211 730 035 million confirmed cases and more than 4,430,697 million people have died. While controlling the virus and implementing vaccines are the main priorities, the population mental health impacts of the pandemic are expected to be longer term and are less obvious than the physical health ones. Lockdown restrictions, physical distancing, social isolation, as well as the loss of a loved one, working in a frontline capacity and loss of economic security may have negative effects on and increase the mental health challenges in populations around the world. There is a major demand for long-term research examining the mental health experiences and needs of people in order to design adequate policies and interventions for sustained action to respond to individual and population mental health needs both during and after the pandemic.

Methods and analysis: This repeated cross-sectional mixed-method study conducts regular self-administered representative surveys, and targeted focus groups and semi-structured interviews with adults in the UK, as well as validation of gathered evidence through citizens’ juries for contextualisation (for the UK as a whole and for its four devolved nations) to ensure that emerging mental health problems are identified early on and are properly understood, and that appropriate policies and interventions are developed and implemented across the UK and within devolved contexts. STATA and NVIVO will be used to carry out quantitative and qualitative analysis, respectively.

Ethics and dissemination: Ethics approval for this study has been granted by the Cambridge Psychology Research Ethics Committee of the University of Cambridge, UK (PRE 2020.050) and by the Health and Life Sciences Research Ethics Committee of De Montfort University, UK (REF 422991). While unlikely, participants completing the self-administered surveys or participating in the virtual focus groups, semi-structured interviews and citizens’ juries might experience distress triggered by questions or conversations. However, appropriate mitigating measures have been adopted and signposting to services and helplines will be available at all times. Furthermore, a dedicated member of staff will also be at hand to debrief following participation in the research and personalised thank-you notes will be sent to everyone taking part in the qualitative research.

Study findings will be disseminated in scientific journals, at research conferences, local research symposia and seminars. Evidence-based open access briefings, articles and reports will be available on our study website for everyone to access. Rapid policy briefings targeting issues emerging from the data will also be disseminated to inform policy and practice. These briefings will position the findings within UK public policy and devolved nations policy and socioeconomic contexts in order to develop specific, timely policy recommendations. Additional dissemination will be done through traditional and social media. Our data will be contextualised in view of existing policies, and changes over time as-and-when policies change.

Research paper thumbnail of Ensure Palestinians have access to COVID-19 vaccines

Research paper thumbnail of Perceived stressors and coping mechanisms of female migrant domestic workers in Singapore

PLoS ONE, 2019

Worldwide, there are between 50-67 million migrant domestic workers, the majority of whom are wom... more Worldwide, there are between 50-67 million migrant domestic workers, the majority of whom are women. In many countries, provisions are not in place to protect female migrant domestic workers. These women may be at risk of occupational and social stressors, including exploitation and abuse, which may negatively impact on their quality of life, including psychological health. Research examining the occupational, social, and psychological needs of FMDWs from a public health perspective is critical to guide the development of policies which ensure wellbeing, prevent abuse, and align with international priorities to improve population health. Though there have been a number of high-profile incidents of exploitation and abuse, there has been limited research on the stressors experienced by these communities, their perceived impact, or coping mechanisms.

Research paper thumbnail of Health assets in a global context: a systematic review of the literature

BMJ Open, 2019

Objective: To provide an up-to-date overview of health assets in a global context both from a the... more Objective: To provide an up-to-date overview of health assets in a global context both from a theoretical perspective and its practical applications to address health inequalities and achieve sustainable health.
Design: A systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.
Data sources: A comprehensive search, including 10 electronic bibliographic databases and hand searches, was undertaken to capture the wide range of terms associated with ‘health assets’ and ‘asset-based approaches to health’.
Eligibility criteria: Any peer-reviewed published and grey literature in English related to ‘health assets’ or ‘assets’ in a ‘health’ context was included without any date, country or study design restrictions and the quality of evidence was appraised according to the Oxford Level of Evidence.
Outcomes: A broad consideration of all outcome measures including clinical outcomes, patient-level, community-level and population-level impacts and costs, was adopted.
Results: 478 publications were included. Health assets were researched in 40 countries, predominantly in the West such as the USA and the UK. A number of broad health assets were identified including community and individual assets. Even though research was conducted in a number of different settings, most occurred in the community, clinical, care or educational settings. A wide variety of interventions and approaches were implemented, most commonly related to education and/or training, asset mapping or asset approaches.
Conclusions: Globally, authors most often referred to general ‘health assets’, ‘assets’ or some form of‘community asset’ in relation to health. Overall, the idea of health assets is framed within a positive paradigm focusing on health creation rather than curative approaches. The sustained credibility of the global ‘health assets’ literature depends on future research on definitional, theoretical and evaluative issues in order to convince policy-makers and service commissioners of its necessity and added value to the traditional deficit approach.

Research paper thumbnail of CSF tau and the CSF tau/ABeta ratio for the diagnosis of Alzheimer's disease dementia and other dementias in people with mild cognitive impairment (MCI). (Review)

Background Research suggests that measurable change in cerebrospinal fluid (CSF) biomarkers occur... more Background
Research suggests that measurable change in cerebrospinal fluid (CSF) biomarkers occurs years in advance of the onset of clinical symptoms (Beckett 2010). In this review, we aimed to assess the ability of CSF tau biomarkers (t-tau and p-tau) and the CSF tau (t-tau or p-tau)/ABeta ratio to enable the detection of Alzheimer’s disease pathology in patients with mild cognitive impairment (MCI). These biomarkers have been proposed as important in new criteria for Alzheimer’s disease dementia that incorporate biomarker abnormalities.

Objectives
To determine the diagnostic accuracy of 1) CSF t-tau, 2) CSF p-tau, 3) the CSF t-tau/ABeta ratio and 4) the CSF p-tau/ABeta ratio index tests for detecting people with MCI at baseline who would clinically convert to Alzheimer’s disease dementia or other forms of dementia at follow-up.

Search methods
The most recent search for this review was performed in January 2013. We searched MEDLINE (OvidSP), Embase (OvidSP), BIOSIS Previews (Thomson Reuters Web of Science), Web of Science Core Collection, including Conference Proceedings Citation Index (Thomson Reuters Web of Science), PsycINFO (OvidSP), and LILACS (BIREME). We searched specialized sources of diagnostic test accuracy studies and reviews. We checked reference lists of relevant studies and reviews for additional studies. We contacted researchers for possible relevant but unpublished data. We did not apply any language or data restriction to the electronic searches. We did not use any methodological filters as a method to restrict the search overall.

Selection criteria
We selected those studies that had prospectively well-defined cohorts with any accepted definition of MCI and with CSF t-tau or p-tau and CSF tau (t-tau or p-tau)/ABeta ratio values, documented at or around the time the MCI diagnosis was made. We also included studies which looked at data from those cohorts retrospectively, and which contained sufficient data to construct two by two tables expressing those biomarker results by disease status. Moreover, studies were only selected if they applied a reference standard for Alzheimer’s disease dementia diagnosis, for example, the NINCDS-ADRDA or Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) criteria.

Data collection and analysis
We screened all titles generated by the electronic database searches. Two review authors independently assessed the abstracts of all potentially relevant studies, and the full papers for eligibility. Two independent assessors performed data extraction and quality assessment. Where data allowed, we derived estimates of sensitivity at fix
ed values of specificity from the model we fitted to produce the summary receiver operating characteristic (ROC) curve.

Main results
In total, 1282 participants with MCI at baseline were identified in the 15 included studies of which 1172 had analysable data; 430 participants converted to Alzheimer’s disease dementia and 130 participants to other forms of dementia. Follow-up ranged from less than one year to over four years for some participants, but in the majority of studies was in the range one to three years.

Conversion to Alzheimer’s disease dementia
The accuracy of the CSF t-tau was evaluated in seven studies (291 cases and 418 non-cases).The sensitivity values ranged from 51% to 90% while the specificity values ranged from 48% to 88%. At the median specificity of 72%, the estimated sensitivity was 75% (95% CI 67 to 85), the positive likelihood ratio was 2.72 (95% CI 2.43 to 3.04), and the negative likelihood ratio was 0.32 (95% CI 0.22 to 0.47).
Six studies (164 cases and 328 non-cases) evaluated the accuracy of the CSF p-tau. The sensitivities were between 40% and 100% while the specificities were between 22% and 86%. At the median specificity of 47.5%, the estimated sensitivity was 81% (95% CI: 64 to 91), the positive likelihood ratio was 1.55 (CI 1.31 to 1.84), and the negative likelihood ratio was 0.39 (CI: 0.19 to 0.82).
Five studies (140 cases and 293 non-cases) evaluated the accuracy of the CSF p-tau/ABeta ratio. The sensitivities were between 80% and 96% while the specificities were between 33% and 95%. We did not conduct a meta-analysis because the studies were few and small. Only one study reported the accuracy of CSF t-tau/ABeta ratio.
Our findings are based on studies with poor reporting. A significant number of studies had unclear risk of bias for the reference standard, participant selection and flow and timing domains. According to the assessment of index test domain, eight of 15 studies were of poor
methodological quality.
The accuracy of these CSF biomarkers for ‘other dementias’ had not been investigated in the included primary studies.

Investigation of heterogeneity
The main sources of heterogeneity were thought likely to be reference standards used for the target disorders, sources of recruitment, participant sampling, index test methodology and aspects of study quality (particularly, inadequate blinding).
We were not able to formally assess the effect of each potential source of heterogeneity as planned, due to the small number of studies
available to be included.

Authors’ conclusions
The insufficiency and heterogeneity of research to date primarily leads to a state of uncertainty regarding the value of CSF testing of t-tau, p-tau or p-tau/ABeta ratio for the diagnosis of Alzheimer’s disease in current clinical practice. Particular attention should be paid to the risk of misdiagnosis and overdiagnosis of dementia (and therefore over-treatment) in clinical practice. These tests, like other biomarker tests which have been subject to Cochrane DTA reviews, appear to have better sensitivity than specificity and therefore might have greater utility in ruling out Alzheimer’s disease as the aetiology to the individual’s evident cognitive impairment, as opposed to ruling it in. The heterogeneity observed in the few studies awaiting classification suggests our initial summary will remain valid.
However, these tests may have limited clinical value until uncertainties have been addressed. Future studies with more uniformed approaches to thresholds, analysis and study conduct may provide a more homogenous estimate than the one that has been available from the included studies we have identified.

Research paper thumbnail of Midlife Approaches to Prevention of Ill Health in Later Life

The Cambridge Institute of Public Health conducted 3 rapid evidence reviews to inform the Nationa... more The Cambridge Institute of Public Health conducted 3 rapid evidence reviews to inform the National Institute for Health and Care Excellence (NICE) guideline on midlife approaches to prevent or delay onset of dementia, disability, and frailty (DDF) published on October 20, 2015.

The full version of the guideline and its supporting documents contain details of the methods used to derive the recommendations.1 The effectiveness of individually directed midlife (40-64 years) interventions to increase the uptake and maintenance of healthy behaviors are summarized herein. No studies reported on the effect of midlife interventions on DDF outcomes.

Research paper thumbnail of Psychosocial effects of an Ebola outbreak at individual, community and international levels

The 2013–2016 Ebola outbreak in Guinea, Liberia and Sierra Leone was the worst in history with ov... more The 2013–2016 Ebola outbreak in Guinea, Liberia and Sierra Leone was the worst in history with over 28 000 cases and 11 000 deaths. Here we examine the psychosocial consequences of the epidemic. Ebola is a traumatic illness both in terms of symptom severity and mortality rates. Those a ected are likely to experience psychological e ects due to the traumatic course of the infection, fear of death and experience of witnessing others dying. Survivors can also experience psychosocial consequences due to feelings of shame or guilt (e.g. from transmitting infection to others) and stigmatization or blame from their communities. At the community level, a cyclical pattern of fear occurs, with a loss of trust in health services and stigma, resulting in disruptions of community interactions and community break down. Health systems in a ected countries were severely disrupted and overstretched by the outbreak and their capacities were signi cantly reduced as almost 900 health-care workers were infected with Ebola and more than 500 died. The outbreak resulted in an increased need for health services, reduced quality of life and economic productivity and social system break down. It is essential that the global response to the outbreak considers both acute and long-term psychosocial needs of individuals and communities. Response e orts should involve communities to address psychosocial need, to rebuild health systems and trust and to limit stigma. The severity of this epidemic and its long-lasting repercussions should spur investment in and development of health systems.

Research paper thumbnail of Behavioural Risk Factors in Mid-Life Associated with Successful Ageing, Disability, Dementia and Frailty in Later Life: A Rapid Systematic Review

Background Smoking, alcohol consumption, poor diet and low levels of physical activity significan... more Background
Smoking, alcohol consumption, poor diet and low levels of physical activity significantly contribute to the burden of illness in developed countries. Whilst the links between specific and multiple risk behaviours and individual chronic conditions are well documented, the impact of these behaviours in mid-life across a range of later life outcomes has yet to be comprehensively assessed. This review aimed to provide an overview of behavioural risk factors in mid-life that are associated with successful ageing and the primary prevention or delay of disability, dementia, frailty and non-communicable chronic conditions.
Methods
A literature search was conducted to identify cohort studies published in English since 2000 up to Dec 2014. Multivariate analyses and a minimum follow-up of five years were required for inclusion. Two reviewers screened titles, abstracts and papers independently. Studies were assessed for quality. Evidence was synthesised by mid-life behavioural risk for a range of late life outcomes.
Findings
This search located 10,338 individual references, of which 164 are included in this review. Follow-up data ranged from five years to 36 years. Outcomes include dementia, frailty, disability and cardiovascular disease. There is consistent evidence of beneficial associa- tions between mid-life physical activity, healthy ageing and disease outcomes. Across all populations studied there is consistent evidence that mid-life smoking has a detrimental effect on health. Evidence specific to alcohol consumption was mixed. Limited, but supportive, evidence was available relating specifically to mid-life diet, leisure and social activities or health inequalities.
Conclusions
There is consistent evidence of associations between mid-life behaviours and a range of late life outcomes. The promotion of physical activity, healthy diet and smoking cessation in all mid-life populations should be encouraged for successful ageing and the prevention of disability and chronic disease.

Research paper thumbnail of Barriers and Facilitators to the Uptake and Maintenance of Healthy Behaviours by People at Mid-Life: A Rapid Systematic Review

Background With an ageing population, there is an increasing societal impact of ill health in lat... more Background
With an ageing population, there is an increasing societal impact of ill health in later life. People who adopt healthy behaviours are more likely to age successfully. To engage people in health promotion initiatives in mid-life, a good understanding is needed of why people do not undertake healthy behaviours or engage in unhealthy ones.

Methods
Searches were conducted to identify systematic reviews and qualitative or longitudinal cohort studies that reported mid-life barriers and facilitators to healthy behaviours. Mid-life ranged from 40 to 64 years, but younger adults in disadvantaged or minority groups were also eligible to reflect potential earlier disease onset. Two reviewers independently conducted reference screening and study inclusion. Included studies were assessed for quality. Barriers and facilitators were identified and synthesised into broader themes to allow comparisons across behavioural risks.
Findings
From 16,426 titles reviewed, 28 qualitative studies, 11 longitudinal cohort studies and 46 systematic reviews were included. Evidence was found relating to uptake and maintenance of physical activity, diet and eating behaviours, smoking, alcohol, eye care, and other health promoting behaviours and grouped into six themes: health and quality of life, sociocultural factors, the physical environment, access, psychological factors, evidence relating to health inequalities. Most of the available evidence was from developed countries. Barriers that recur across different health behaviours include lack of time (due to family, household and occupational responsibilities), access issues (to transport, facilities and resources), financial costs, entrenched attitudes and behaviours, restrictions in the physical environment, low socioeconomic status, lack of knowledge. Facilitators include a focus on enjoyment, health benefits including healthy ageing, social support, clear messages, and integration of behaviours into lifestyle. Specific issues relating to population and culture were identified relating to health inequalities.
Conclusions
The barriers and facilitators identified can inform the design of tailored interventions for people in mid-life.

Research paper thumbnail of Exploring attitudes and preferences for dementia screening in Britain: contributions from carers and the general public

Background: Dementia is becoming one of the most important emerging public health concerns in a g... more Background: Dementia is becoming one of the most important emerging public health concerns in a generation. In societal approaches to the mitigation of major disease ‘burden’, population screening can sometimes provide an effective approach to improving detection of disease and outcomes. However the acceptability of a systematic population screening programme for dementia, to the British public, is not known.
Methods: A Patient and Public Involvement (PPI) event was organised to give members of the public from the East of England an opportunity to offer their perspectives and to comment on the findings of a systematic literature review looking at attitudes and preferences towards screening for dementia. The event was attended by 36 members of the public and eight national Alzheimer’s Society Research Network volunteers. The morning discussion contained a presentation, which defined population screening for attendees but contained no reference to the findings of the review. In the afternoon, findings of the review were presented and a discussion on the results was facilitated. The discussions were recorded, transcribed and subjected to thematic analysis. The NVivo qualitative data software was used to facilitate this process.
Results: A total of 23 key themes emerged in relation to the carer and general population. The most frequent themes which emerged were the low levels of understanding and awareness around the dementia syndrome; the acceptability and validity of any tests; costs to the National Health Service (NHS); an individual’s existing health status existing health status; financial/profit motive for screening; the inability to change prognosis; and the importance and availability of support.
Conclusions: Factors such as personal beliefs, experiences and attitudes to health impact on decisions to be screened for dementia. A number of additional concerns were raised which were not previously identified in the systematic literature review. These were around the economic incentives for screening (profit motive), the provision of social support, and the economic/social impacts of screening programmes. This may reflect cultural differences in health and social care funding models between Britain and other countries where previous research was conducted.

Research paper thumbnail of Attitudes and preferences towards screening for dementia: a systematic review of the literature

Background: Population screening might provide a mechanism to enable early detection of dementia.... more Background: Population screening might provide a mechanism to enable early detection of dementia. Yet the potential benefits, harms or acceptability of such a large-scale intervention are not well understood. This research aims to examine the attitudes and preferences of the general public, health care professionals, people with dementia and their carers towards population screening for dementia.
Methods: A systematic review of the international literature was undertaken. A search of fifteen bibliographic databases was conducted (up to 12 July 2012; no language restriction) using terms related to dementia, screening, specific screening tools, case finding, and attitudes and preferences; genetic screening and biomarkers were excluded. All study designs were included except opinion-based papers. Included papers were doubly quality assessed and thematically analysed using NVivo.
Results: 29,910 papers were identified of which 29 met the inclusion criteria. We identified seventeen themes relating to the 3 phases of the screening process (pre-, in- and post-screen) – none emerged as more of a facilitator than a barrier to the acceptance of dementia screening. Seven themes emerged in relation to the patient, carer and general population: existing health state; lifestyle and life view; awareness of dementia; role of clinician; communication; benefit; and role of the family. Ten themes emerged in relation to the clinician and healthcare professional: patient’s existing health and comorbidities; awareness of dementia; confidence; duration of patient contact; suitability of screening tool; cost; disclosure; time; treatment and prognosis; and stigma.
Conclusions: As for all screening programmes, screening for dementia raises complex issues around preference and choice for clinicians and the public, and it is unclear what specific factors promote or reduce screening acceptance the most. Overall, the level of evidence is low, few large scale studies have been undertaken and none were conducted in representative samples, all affecting the generalizability of identified themes across healthcare contexts. Nevertheless, our findings suggest that population screening for dementia may not be acceptable to either the general public or health care professionals, and highlight where focused efforts are needed to gain insights into dementia specific issues.

Research paper thumbnail of 18F-FDG PET for the early diagnosis of Alzheimer’s disease dementia and other dementias in people with mild cognitive impairment (MCI) (Review)

Background 1 F-FDFG uptake by brain tissue as measured by positron emission tomography (PET) is a... more Background
1 F-FDFG uptake by brain tissue as measured by positron emission tomography (PET) is a well-established method for assessment of brain function in people with dementia. Certain findings on brain PET scans can potentially predict the decline of mild cognitive Impairment (MCI) to Alzheimer’s disease dementia or other dementias.
Objectives
To determine the diagnostic accuracy of the 1 F-FDG PET index test for detecting people with MCI at baseline who would clinically convert to Alzheimer’s disease dementia or other forms of dementia at follow-up.
Search methods
We searched the Cochrane Register of Diagnostic Test Accuracy Studies, MEDLINE, EMBASE, Science Citation Index, PsycINFO, BIOSIS previews, LILACS, MEDION, (Meta-analyses van Diagnostisch Onderzoek), DARE (Database of Abstracts of Reviews of Effects), HTA (Health Technology Assessment Database), ARIF (Aggressive Research Intelligence Facility) and C-EBLM (International Federation of Clinical Chemistry and Laboratory Medicine Committee for Evidence-based Laboratory Medicine) databases to January 2013. We checked the reference lists of any relevant studies and systematic reviews for additional studies.
Selection criteria
We included studies that evaluated the diagnostic accuracy of 1 F-FDG PET to determine the conversion from MCI to Alzheimer’s disease dementia or to other forms of dementia, i.e. any or all of vascular dementia, dementia with Lewy bodies, and fronto-temporal dementia. These studies necessarily employ delayed verification of conversion to dementia and are sometimes labelled as ‘delayed verification cross-sectional studies’.
Data collection and analysis
Two blinded review authors independently extracted data, resolving disagreement by discussion, with the option to involve a third review author as arbiter if necessary. We extracted and summarised graphically the data for two-by-two tables. We conducted exploratory analyses by plotting estimates of sensitivity and specificity from each study on forest plots and in receiver operating characteristic (ROC) space. When studies had mixed thresholds, we derived estimates of sensitivity and likelihood ratios at fixed values (lower quartile, median and upper quartile) of specificity from the hierarchical summary ROC (HSROC) models.
Main results
We included 14 studies (421 participants) in the analysis. The sensitivities for conversion from MCI to Alzheimer’s disease dementia were between 25% and 100% while the specificities were between 15% and 100%. From the summary ROC curve we fitted we estimated that the sensitivity was 76% (95% confidence interval (CI): 53.8 to 89.7) at the included study median specificity of 82%. This equates to a positive likelihood ratio of 4.03 (95% CI: 2.97 to 5.47), and a negative likelihood ratio of 0.34 (95% CI: 0.15 to 0.75). Three studies recruited participants from the same Alzheimer’s Disease Neuroimaging Initiative (ADNI) cohort but only the largest ADNI study (Herholz 2011) is included in the meta-analysis. In order to demonstrate whether the choice of ADNI study or discriminating brain region (Chételat 2003) or reader assessment (Pardo 2010) make a difference to the pooled estimate, we performed five additional analyses. At the median specificity of 82%, the estimated sensitivity was between 74% and 76%. There was no impact
on our findings. In addition to evaluating Alzheimer’s disease dementia, five studies evaluated the accuracy of 1 F-FDG PET for all types of dementia. The sensitivities were between 46% and 95% while the specificities were between 29% and 100%; however, we did not conduct a meta-analysis because of too few studies, and those studies which we had found recruited small numbers of participants. Our findings are based on studies with poor reporting, and the majority of included studies had an unclear risk of bias, mainly for the reference standard and participant selection domains. According to the assessment of Index test domain, more than 50% of studies were of poor methodological quality.
Authors’ conclusions
It is difficult to determine to what extent the findings from the meta-analysis can be applied to clinical practice. Given the considerable variability of specificity values and lack of defined thresholds for determination of test positivity in the included studies, the current
evidence does not support the routine use of 1 F-FDG PET scans in clinical practice in people with MCI. The 1 F-FDG PET scan
is a high-cost investigation, and it is therefore important to clearly demonstrate its accuracy and to standardise the process of 1 F- FDG PET diagnostic modality prior to its being widely used. Future studies with more uniform approaches to thresholds, analysis and study conduct may provide a more homogeneous estimate than the one available from the included studies we have identified.

Research paper thumbnail of Unplanned, urgent and emergency care: what are the roles that EMS plays in providing for older people with dementia? An integrative review of policy, professional recommendations and evidence

Emergency Medicine Journal, Dec 2, 2014

Objective To synthesise the existing literature on the roles that emergency medical services (EMS... more Objective To synthesise the existing literature on the roles that emergency medical services (EMS) play in unplanned, urgent and emergency care for older people with dementia (OPWD), to define these roles, understand the strength of current research and to identify where the focus of future research should lie. Design An integrative review of the synthesised reports, briefings, professional recommendations and evidence. English-language articles were included if they made any reference to the role of EMS in the urgent or emergency care of OPWD. Preparatory scoping and qualitative work with frontline ambulance and primary care staff and carers of OPWD informed our review question and subsequent synthesis.
Results Seventeen literature sources were included. Over half were from the grey literature. There was no research that directly addressed the review question. There was evidence in reports, briefings and professional recommendations of EMS addressing some of the issues they face in caring for OPWD. Three roles of EMS could be drawn out of the literature: emergency transport, assess and manage and a ‘last resort’ or safety net role. Conclusions The use of EMS by OPWD is not well understood, although the literature reviewed demonstrated a concern for this group and awareness that services are not optimum. Research in dementia care should consider the role that EMS plays, particularly if considering crises, urgent care responses and transitions between care settings. EMS research into new ways of working, training or extended paramedical roles should consider specific needs and challenges of responding to people with dementia.

Research paper thumbnail of Self-management interventions for people living with HIV/AIDS (Protocol)

This is the protocol for a review and there is no abstract. The objectives are as follows: Prima... more This is the protocol for a review and there is no abstract. The objectives are as follows:

Primary objectives: To assess the effects of self-management interventions for adults living with HIV in improving quality of life, psychological health outcomes, and health status.

Secondary objectives: To determine the effect of self-management programs on activity levels, health care utilisation, risk-taking behaviour, and experience of symptoms. To compare the effectiveness of different types of programmes, including delivery by lay person or healthcare professional.

Research paper thumbnail of Factors associated with active aging in Finland, Poland, and Spain

International Psychogeriatrics, Apr 15, 2014

Background: Continuous population aging has raised international policy interest in promoting act... more Background: Continuous population aging has raised international policy interest in promoting active aging (AA). AA theoretical models have been defined from a biomedical or a psychosocial perspective. These models may be expanded including components suggested by lay individuals. This paper aims to study the correlates of AA in three European countries, namely, Spain, Poland, and Finland using four different definitions of AA.

Research paper thumbnail of The APP proteolytic system and its interactions with dynamic networks in Alzheimer’s Disease: (towards systems biology approaches for elucidation of dysregulated networks and early diagnosis and optimisation of health care planning).

In (Juan I. Castrillo and Stephen G. Oliver Eds). Systems Biology of Alzheimer’s disease: Methods and Protocols. MIMB Series Humana, Springer. New York.

Diseases of aging are often complex and multifactorial, involving many genetic and life course mo... more Diseases of aging are often complex and multifactorial, involving many genetic and life course modifi ers. Systems biology is becoming an essential tool to investigate disease initiation and disease progression. Alzheimer's disease (AD) can be used as a case study to investigate the application of systems biology to complex disease. Here we describe approaches to capturing biological data, representing data in terms of networks and interpreting their meaning in relation to the human population. We highlight issues that remain to be addressed both in terms of modeling disease progression and in relating fi ndings to the current understanding of human disease.

Research paper thumbnail of Dementia care pathways in prisonsa comprehensive scoping review

Health and Justice, 2024

Background The number of older people in prison is growing. As a result, there will also be more ... more Background The number of older people in prison is growing. As a result, there will also be more prisoners suffering from dementia. The support and management of this population is likely to present multiple challenges to the prison system. Objectives To examine the published literature on the care and supervision of people living in prison with dementia and on transitioning into the community; to identify good practice and recommendations that might inform the development of prison dementia care pathways. Methods A scoping review methodology was adopted with reporting guided by the PRISMA extension for scoping reviews checklist and explanation. Results Sixty-seven papers were included. Most of these were from high income countries, with the majority from the United Kingdom (n = 34), followed by the United States (n = 15), and Australia (n = 12). One further paper was from India. Discussion The literature indicated that there were difficulties across the prison system for people with dementia along the pathway from reception to release and resettlement. These touched upon all aspects of prison life and its environment, including health and social care. A lack of resources and national and regional policies were identified as important barriers, although a number of solutions were also identified in the literature, including the development of locally tailored policies and increased collaboration with the voluntary sector. Conclusion To our knowledge, this is the most comprehensive and inclusive review of the literature on dementia care pathways in prison to date. It has identified a number of important areas of concern and opportunities for future research across the prison system, and its operations. This will hopefully lead to the identification or adaptation of interventions to be implemented and evaluated, and facilitate the development of dementia care pathways in prisons.

Research paper thumbnail of Inequalities and mental health during the Coronavirus pandemic in the UK: a mixed-methods exploration

BMC Public Health , 2023

Background The World Health Organisation declared the novel Coronavirus disease (COVID-19) a glob... more Background The World Health Organisation declared the novel Coronavirus disease (COVID-19) a global pandemic on 11th March 2020. Since then, the world has been firmly in its grip. At the time of writing, there were more than 767,972,961 million confirmed cases and over 6,950,655 million deaths. While the main policy focus has been on controlling the virus and ensuring vaccine roll-out and uptake, the population mental health impacts of the pandemic are expected to be long-term, with certain population groups affected more than others. Conclusions The pandemic is taking a long-term toll on the nations' mental health which will continue to have impacts for years to come. It is therefore crucial to learn the vital lessons learned from this pandemic. Specific as well as whole-government policies need to respond to this, address inequalities and the different needs across the lifecourse and across society, and take a holistic approach to mental health improvement across the UK.

Research paper thumbnail of The mental health experiences of ethnic minorities in the UK during the Coronavirus pandemic: A qualitative exploration

Frontiers in Public Health , 2022

Background: Worldwide, the Coronavirus pandemic has had a major impact on people’s health, lives,... more Background: Worldwide, the Coronavirus pandemic has had a major impact on people’s health, lives, and livelihoods. However, this impact has not been felt equally across various population groups. People from ethnic minority backgrounds in the UK have been more adversely aected by the pandemic, especially in terms of their physical health. Their mental health, on the other hand, has received less attention. This study aimed to explore the mental health experiences of UK adults from ethnic minorities during the Coronavirus pandemic. This work forms part of our wider long-term UK population study “Mental Health in the Pandemic.”
Methods: We conducted an exploratory qualitative study with people from ethnic minority communities across the UK. A series of in-depth interviews were conducted with 15 women, 14 men and 1 non-binary person from ethnic minority backgrounds, aged between 18 and 65 years old (mean age = 40). We utilized purposefully selected maximum variation sampling in order to capture as wide a variety of views, perceptions and experiences as possible. Inclusion criteria: adults (18+) from ethnic minorities across the UK; able to provide full consent to participate; able to participate in a video- or phone-call interview. All interviews took place via MS Teams or Zoom. The gathered data were transcribed verbatim and underwent thematic analysis following Braun and Clarke carried out using NVivo 12 software.
Results: The qualitative data analysis yielded seven overarching themes: (1) pandemic-specific mental health and wellbeing experiences; (2) issues relating to the media; (3) coping mechanisms; (4) worries around and attitudes toward vaccination; (5) suggestions for support in moving forward; (6) best and worst experiences during pandemic and lockdowns; (7) biggest areas of change in personal life. Generally, participants’ mental health experiences varied with some not being aected by the pandemic in a way related to their ethnicity, some sharing positive experiences and coping strategies (exercising more, spending more time with family, community cohesion), and some expressing negative experiences (eating or drinking more, feeling more isolated, or even racism and abuse, especially toward Asian communities). Concerns were raised around trust issues in relation to the media, the inadequate representation of ethnic minorities, and the spread of fake news especially on social media. Attitudes toward vaccinations varied too, with some people more willing to have the vaccine than others.
Conclusion: This study’s findings highlight the diversity in the pandemic mental health experiences of ethnic minorities in the UK and has implications for policy, practice and further research. To enable moving forward beyond the pandemic, our study surfaced the need for culturally appropriate mental health support, financial support (as a key mental health determinant), accurate media representation, and clear communication messaging from the Governments of the UK.

Research paper thumbnail of Patient and public involvement (PPI) in prisons: the involvement of people living in prison in the research processa systematic scoping review

Health Justice, 2021

Background: Patient and Public Involvement (PPI) in health and social care research is increasing... more Background: Patient and Public Involvement (PPI) in health and social care research is increasingly prevalent and is promoted in policy as a means of improving the validity of research. This also applies to people living in prison and using social care services. Whilst evidence for the effectiveness of PPI was limited and reviews of its application in prisons were not found, the infancy of the evidence base and moral and ethical reasons for involvement mean that PPI continues to be advocated in the community and in prisons. Objectives: To conduct a review of the literature regarding the involvement of people or persons living in prison (PLiP) in health and social care research focused on: (i) aims; (ii) types of involvement; (iii) evaluations and findings; (iv) barriers and solutions; and (v) feasibility of undertaking a systematic review. Methods: A systematic scoping review was undertaken following Arksey and O'Malley's (International Journal of Social Research Methodology 8: 19-32, 2005) five-stage framework. A comprehensive search was conducted involving ten electronic databases up until December 2020 using patient involvement and context related search terms. A review-specific spreadsheet was created following the PICO formula, and a narrative synthesis approach was taken to answer the research questions. PRISMA guidelines were followed in reporting. Results: 39 papers were selected for inclusion in the review. The majority of these took a 'participatory' approach to prisoner involvement, which occurred at most stages during the research process except for more 'higher' level research operations (funding applications and project management), and only one study was led by PLiPs. Few studies involved an evaluation of the involvement of PLiP, and this was mostly PLiP or researcher reflections without formal or independent analysis, and largely reported a positive impact. Barriers to the involvement of PLiP coalesced around power differences and prison bureaucracy.

Research paper thumbnail of Mental health in the pandemic: a repeated cross-sectional mixed-method study protocol to investigate the mental health impacts of the coronavirus pandemic in the UK

BMJ Open, 2021

Introduction: The WHO declared a global pandemic on 11 March 2020. Since then, the world has been... more Introduction: The WHO declared a global pandemic on 11 March 2020. Since then, the world has been firmly in the grip of the COVID-19. To date, more than 211 730 035 million confirmed cases and more than 4,430,697 million people have died. While controlling the virus and implementing vaccines are the main priorities, the population mental health impacts of the pandemic are expected to be longer term and are less obvious than the physical health ones. Lockdown restrictions, physical distancing, social isolation, as well as the loss of a loved one, working in a frontline capacity and loss of economic security may have negative effects on and increase the mental health challenges in populations around the world. There is a major demand for long-term research examining the mental health experiences and needs of people in order to design adequate policies and interventions for sustained action to respond to individual and population mental health needs both during and after the pandemic.

Methods and analysis: This repeated cross-sectional mixed-method study conducts regular self-administered representative surveys, and targeted focus groups and semi-structured interviews with adults in the UK, as well as validation of gathered evidence through citizens’ juries for contextualisation (for the UK as a whole and for its four devolved nations) to ensure that emerging mental health problems are identified early on and are properly understood, and that appropriate policies and interventions are developed and implemented across the UK and within devolved contexts. STATA and NVIVO will be used to carry out quantitative and qualitative analysis, respectively.

Ethics and dissemination: Ethics approval for this study has been granted by the Cambridge Psychology Research Ethics Committee of the University of Cambridge, UK (PRE 2020.050) and by the Health and Life Sciences Research Ethics Committee of De Montfort University, UK (REF 422991). While unlikely, participants completing the self-administered surveys or participating in the virtual focus groups, semi-structured interviews and citizens’ juries might experience distress triggered by questions or conversations. However, appropriate mitigating measures have been adopted and signposting to services and helplines will be available at all times. Furthermore, a dedicated member of staff will also be at hand to debrief following participation in the research and personalised thank-you notes will be sent to everyone taking part in the qualitative research.

Study findings will be disseminated in scientific journals, at research conferences, local research symposia and seminars. Evidence-based open access briefings, articles and reports will be available on our study website for everyone to access. Rapid policy briefings targeting issues emerging from the data will also be disseminated to inform policy and practice. These briefings will position the findings within UK public policy and devolved nations policy and socioeconomic contexts in order to develop specific, timely policy recommendations. Additional dissemination will be done through traditional and social media. Our data will be contextualised in view of existing policies, and changes over time as-and-when policies change.

Research paper thumbnail of Ensure Palestinians have access to COVID-19 vaccines

Research paper thumbnail of Perceived stressors and coping mechanisms of female migrant domestic workers in Singapore

PLoS ONE, 2019

Worldwide, there are between 50-67 million migrant domestic workers, the majority of whom are wom... more Worldwide, there are between 50-67 million migrant domestic workers, the majority of whom are women. In many countries, provisions are not in place to protect female migrant domestic workers. These women may be at risk of occupational and social stressors, including exploitation and abuse, which may negatively impact on their quality of life, including psychological health. Research examining the occupational, social, and psychological needs of FMDWs from a public health perspective is critical to guide the development of policies which ensure wellbeing, prevent abuse, and align with international priorities to improve population health. Though there have been a number of high-profile incidents of exploitation and abuse, there has been limited research on the stressors experienced by these communities, their perceived impact, or coping mechanisms.

Research paper thumbnail of Health assets in a global context: a systematic review of the literature

BMJ Open, 2019

Objective: To provide an up-to-date overview of health assets in a global context both from a the... more Objective: To provide an up-to-date overview of health assets in a global context both from a theoretical perspective and its practical applications to address health inequalities and achieve sustainable health.
Design: A systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.
Data sources: A comprehensive search, including 10 electronic bibliographic databases and hand searches, was undertaken to capture the wide range of terms associated with ‘health assets’ and ‘asset-based approaches to health’.
Eligibility criteria: Any peer-reviewed published and grey literature in English related to ‘health assets’ or ‘assets’ in a ‘health’ context was included without any date, country or study design restrictions and the quality of evidence was appraised according to the Oxford Level of Evidence.
Outcomes: A broad consideration of all outcome measures including clinical outcomes, patient-level, community-level and population-level impacts and costs, was adopted.
Results: 478 publications were included. Health assets were researched in 40 countries, predominantly in the West such as the USA and the UK. A number of broad health assets were identified including community and individual assets. Even though research was conducted in a number of different settings, most occurred in the community, clinical, care or educational settings. A wide variety of interventions and approaches were implemented, most commonly related to education and/or training, asset mapping or asset approaches.
Conclusions: Globally, authors most often referred to general ‘health assets’, ‘assets’ or some form of‘community asset’ in relation to health. Overall, the idea of health assets is framed within a positive paradigm focusing on health creation rather than curative approaches. The sustained credibility of the global ‘health assets’ literature depends on future research on definitional, theoretical and evaluative issues in order to convince policy-makers and service commissioners of its necessity and added value to the traditional deficit approach.

Research paper thumbnail of CSF tau and the CSF tau/ABeta ratio for the diagnosis of Alzheimer's disease dementia and other dementias in people with mild cognitive impairment (MCI). (Review)

Background Research suggests that measurable change in cerebrospinal fluid (CSF) biomarkers occur... more Background
Research suggests that measurable change in cerebrospinal fluid (CSF) biomarkers occurs years in advance of the onset of clinical symptoms (Beckett 2010). In this review, we aimed to assess the ability of CSF tau biomarkers (t-tau and p-tau) and the CSF tau (t-tau or p-tau)/ABeta ratio to enable the detection of Alzheimer’s disease pathology in patients with mild cognitive impairment (MCI). These biomarkers have been proposed as important in new criteria for Alzheimer’s disease dementia that incorporate biomarker abnormalities.

Objectives
To determine the diagnostic accuracy of 1) CSF t-tau, 2) CSF p-tau, 3) the CSF t-tau/ABeta ratio and 4) the CSF p-tau/ABeta ratio index tests for detecting people with MCI at baseline who would clinically convert to Alzheimer’s disease dementia or other forms of dementia at follow-up.

Search methods
The most recent search for this review was performed in January 2013. We searched MEDLINE (OvidSP), Embase (OvidSP), BIOSIS Previews (Thomson Reuters Web of Science), Web of Science Core Collection, including Conference Proceedings Citation Index (Thomson Reuters Web of Science), PsycINFO (OvidSP), and LILACS (BIREME). We searched specialized sources of diagnostic test accuracy studies and reviews. We checked reference lists of relevant studies and reviews for additional studies. We contacted researchers for possible relevant but unpublished data. We did not apply any language or data restriction to the electronic searches. We did not use any methodological filters as a method to restrict the search overall.

Selection criteria
We selected those studies that had prospectively well-defined cohorts with any accepted definition of MCI and with CSF t-tau or p-tau and CSF tau (t-tau or p-tau)/ABeta ratio values, documented at or around the time the MCI diagnosis was made. We also included studies which looked at data from those cohorts retrospectively, and which contained sufficient data to construct two by two tables expressing those biomarker results by disease status. Moreover, studies were only selected if they applied a reference standard for Alzheimer’s disease dementia diagnosis, for example, the NINCDS-ADRDA or Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) criteria.

Data collection and analysis
We screened all titles generated by the electronic database searches. Two review authors independently assessed the abstracts of all potentially relevant studies, and the full papers for eligibility. Two independent assessors performed data extraction and quality assessment. Where data allowed, we derived estimates of sensitivity at fix
ed values of specificity from the model we fitted to produce the summary receiver operating characteristic (ROC) curve.

Main results
In total, 1282 participants with MCI at baseline were identified in the 15 included studies of which 1172 had analysable data; 430 participants converted to Alzheimer’s disease dementia and 130 participants to other forms of dementia. Follow-up ranged from less than one year to over four years for some participants, but in the majority of studies was in the range one to three years.

Conversion to Alzheimer’s disease dementia
The accuracy of the CSF t-tau was evaluated in seven studies (291 cases and 418 non-cases).The sensitivity values ranged from 51% to 90% while the specificity values ranged from 48% to 88%. At the median specificity of 72%, the estimated sensitivity was 75% (95% CI 67 to 85), the positive likelihood ratio was 2.72 (95% CI 2.43 to 3.04), and the negative likelihood ratio was 0.32 (95% CI 0.22 to 0.47).
Six studies (164 cases and 328 non-cases) evaluated the accuracy of the CSF p-tau. The sensitivities were between 40% and 100% while the specificities were between 22% and 86%. At the median specificity of 47.5%, the estimated sensitivity was 81% (95% CI: 64 to 91), the positive likelihood ratio was 1.55 (CI 1.31 to 1.84), and the negative likelihood ratio was 0.39 (CI: 0.19 to 0.82).
Five studies (140 cases and 293 non-cases) evaluated the accuracy of the CSF p-tau/ABeta ratio. The sensitivities were between 80% and 96% while the specificities were between 33% and 95%. We did not conduct a meta-analysis because the studies were few and small. Only one study reported the accuracy of CSF t-tau/ABeta ratio.
Our findings are based on studies with poor reporting. A significant number of studies had unclear risk of bias for the reference standard, participant selection and flow and timing domains. According to the assessment of index test domain, eight of 15 studies were of poor
methodological quality.
The accuracy of these CSF biomarkers for ‘other dementias’ had not been investigated in the included primary studies.

Investigation of heterogeneity
The main sources of heterogeneity were thought likely to be reference standards used for the target disorders, sources of recruitment, participant sampling, index test methodology and aspects of study quality (particularly, inadequate blinding).
We were not able to formally assess the effect of each potential source of heterogeneity as planned, due to the small number of studies
available to be included.

Authors’ conclusions
The insufficiency and heterogeneity of research to date primarily leads to a state of uncertainty regarding the value of CSF testing of t-tau, p-tau or p-tau/ABeta ratio for the diagnosis of Alzheimer’s disease in current clinical practice. Particular attention should be paid to the risk of misdiagnosis and overdiagnosis of dementia (and therefore over-treatment) in clinical practice. These tests, like other biomarker tests which have been subject to Cochrane DTA reviews, appear to have better sensitivity than specificity and therefore might have greater utility in ruling out Alzheimer’s disease as the aetiology to the individual’s evident cognitive impairment, as opposed to ruling it in. The heterogeneity observed in the few studies awaiting classification suggests our initial summary will remain valid.
However, these tests may have limited clinical value until uncertainties have been addressed. Future studies with more uniformed approaches to thresholds, analysis and study conduct may provide a more homogenous estimate than the one that has been available from the included studies we have identified.

Research paper thumbnail of Midlife Approaches to Prevention of Ill Health in Later Life

The Cambridge Institute of Public Health conducted 3 rapid evidence reviews to inform the Nationa... more The Cambridge Institute of Public Health conducted 3 rapid evidence reviews to inform the National Institute for Health and Care Excellence (NICE) guideline on midlife approaches to prevent or delay onset of dementia, disability, and frailty (DDF) published on October 20, 2015.

The full version of the guideline and its supporting documents contain details of the methods used to derive the recommendations.1 The effectiveness of individually directed midlife (40-64 years) interventions to increase the uptake and maintenance of healthy behaviors are summarized herein. No studies reported on the effect of midlife interventions on DDF outcomes.

Research paper thumbnail of Psychosocial effects of an Ebola outbreak at individual, community and international levels

The 2013–2016 Ebola outbreak in Guinea, Liberia and Sierra Leone was the worst in history with ov... more The 2013–2016 Ebola outbreak in Guinea, Liberia and Sierra Leone was the worst in history with over 28 000 cases and 11 000 deaths. Here we examine the psychosocial consequences of the epidemic. Ebola is a traumatic illness both in terms of symptom severity and mortality rates. Those a ected are likely to experience psychological e ects due to the traumatic course of the infection, fear of death and experience of witnessing others dying. Survivors can also experience psychosocial consequences due to feelings of shame or guilt (e.g. from transmitting infection to others) and stigmatization or blame from their communities. At the community level, a cyclical pattern of fear occurs, with a loss of trust in health services and stigma, resulting in disruptions of community interactions and community break down. Health systems in a ected countries were severely disrupted and overstretched by the outbreak and their capacities were signi cantly reduced as almost 900 health-care workers were infected with Ebola and more than 500 died. The outbreak resulted in an increased need for health services, reduced quality of life and economic productivity and social system break down. It is essential that the global response to the outbreak considers both acute and long-term psychosocial needs of individuals and communities. Response e orts should involve communities to address psychosocial need, to rebuild health systems and trust and to limit stigma. The severity of this epidemic and its long-lasting repercussions should spur investment in and development of health systems.

Research paper thumbnail of Behavioural Risk Factors in Mid-Life Associated with Successful Ageing, Disability, Dementia and Frailty in Later Life: A Rapid Systematic Review

Background Smoking, alcohol consumption, poor diet and low levels of physical activity significan... more Background
Smoking, alcohol consumption, poor diet and low levels of physical activity significantly contribute to the burden of illness in developed countries. Whilst the links between specific and multiple risk behaviours and individual chronic conditions are well documented, the impact of these behaviours in mid-life across a range of later life outcomes has yet to be comprehensively assessed. This review aimed to provide an overview of behavioural risk factors in mid-life that are associated with successful ageing and the primary prevention or delay of disability, dementia, frailty and non-communicable chronic conditions.
Methods
A literature search was conducted to identify cohort studies published in English since 2000 up to Dec 2014. Multivariate analyses and a minimum follow-up of five years were required for inclusion. Two reviewers screened titles, abstracts and papers independently. Studies were assessed for quality. Evidence was synthesised by mid-life behavioural risk for a range of late life outcomes.
Findings
This search located 10,338 individual references, of which 164 are included in this review. Follow-up data ranged from five years to 36 years. Outcomes include dementia, frailty, disability and cardiovascular disease. There is consistent evidence of beneficial associa- tions between mid-life physical activity, healthy ageing and disease outcomes. Across all populations studied there is consistent evidence that mid-life smoking has a detrimental effect on health. Evidence specific to alcohol consumption was mixed. Limited, but supportive, evidence was available relating specifically to mid-life diet, leisure and social activities or health inequalities.
Conclusions
There is consistent evidence of associations between mid-life behaviours and a range of late life outcomes. The promotion of physical activity, healthy diet and smoking cessation in all mid-life populations should be encouraged for successful ageing and the prevention of disability and chronic disease.

Research paper thumbnail of Barriers and Facilitators to the Uptake and Maintenance of Healthy Behaviours by People at Mid-Life: A Rapid Systematic Review

Background With an ageing population, there is an increasing societal impact of ill health in lat... more Background
With an ageing population, there is an increasing societal impact of ill health in later life. People who adopt healthy behaviours are more likely to age successfully. To engage people in health promotion initiatives in mid-life, a good understanding is needed of why people do not undertake healthy behaviours or engage in unhealthy ones.

Methods
Searches were conducted to identify systematic reviews and qualitative or longitudinal cohort studies that reported mid-life barriers and facilitators to healthy behaviours. Mid-life ranged from 40 to 64 years, but younger adults in disadvantaged or minority groups were also eligible to reflect potential earlier disease onset. Two reviewers independently conducted reference screening and study inclusion. Included studies were assessed for quality. Barriers and facilitators were identified and synthesised into broader themes to allow comparisons across behavioural risks.
Findings
From 16,426 titles reviewed, 28 qualitative studies, 11 longitudinal cohort studies and 46 systematic reviews were included. Evidence was found relating to uptake and maintenance of physical activity, diet and eating behaviours, smoking, alcohol, eye care, and other health promoting behaviours and grouped into six themes: health and quality of life, sociocultural factors, the physical environment, access, psychological factors, evidence relating to health inequalities. Most of the available evidence was from developed countries. Barriers that recur across different health behaviours include lack of time (due to family, household and occupational responsibilities), access issues (to transport, facilities and resources), financial costs, entrenched attitudes and behaviours, restrictions in the physical environment, low socioeconomic status, lack of knowledge. Facilitators include a focus on enjoyment, health benefits including healthy ageing, social support, clear messages, and integration of behaviours into lifestyle. Specific issues relating to population and culture were identified relating to health inequalities.
Conclusions
The barriers and facilitators identified can inform the design of tailored interventions for people in mid-life.

Research paper thumbnail of Exploring attitudes and preferences for dementia screening in Britain: contributions from carers and the general public

Background: Dementia is becoming one of the most important emerging public health concerns in a g... more Background: Dementia is becoming one of the most important emerging public health concerns in a generation. In societal approaches to the mitigation of major disease ‘burden’, population screening can sometimes provide an effective approach to improving detection of disease and outcomes. However the acceptability of a systematic population screening programme for dementia, to the British public, is not known.
Methods: A Patient and Public Involvement (PPI) event was organised to give members of the public from the East of England an opportunity to offer their perspectives and to comment on the findings of a systematic literature review looking at attitudes and preferences towards screening for dementia. The event was attended by 36 members of the public and eight national Alzheimer’s Society Research Network volunteers. The morning discussion contained a presentation, which defined population screening for attendees but contained no reference to the findings of the review. In the afternoon, findings of the review were presented and a discussion on the results was facilitated. The discussions were recorded, transcribed and subjected to thematic analysis. The NVivo qualitative data software was used to facilitate this process.
Results: A total of 23 key themes emerged in relation to the carer and general population. The most frequent themes which emerged were the low levels of understanding and awareness around the dementia syndrome; the acceptability and validity of any tests; costs to the National Health Service (NHS); an individual’s existing health status existing health status; financial/profit motive for screening; the inability to change prognosis; and the importance and availability of support.
Conclusions: Factors such as personal beliefs, experiences and attitudes to health impact on decisions to be screened for dementia. A number of additional concerns were raised which were not previously identified in the systematic literature review. These were around the economic incentives for screening (profit motive), the provision of social support, and the economic/social impacts of screening programmes. This may reflect cultural differences in health and social care funding models between Britain and other countries where previous research was conducted.

Research paper thumbnail of Attitudes and preferences towards screening for dementia: a systematic review of the literature

Background: Population screening might provide a mechanism to enable early detection of dementia.... more Background: Population screening might provide a mechanism to enable early detection of dementia. Yet the potential benefits, harms or acceptability of such a large-scale intervention are not well understood. This research aims to examine the attitudes and preferences of the general public, health care professionals, people with dementia and their carers towards population screening for dementia.
Methods: A systematic review of the international literature was undertaken. A search of fifteen bibliographic databases was conducted (up to 12 July 2012; no language restriction) using terms related to dementia, screening, specific screening tools, case finding, and attitudes and preferences; genetic screening and biomarkers were excluded. All study designs were included except opinion-based papers. Included papers were doubly quality assessed and thematically analysed using NVivo.
Results: 29,910 papers were identified of which 29 met the inclusion criteria. We identified seventeen themes relating to the 3 phases of the screening process (pre-, in- and post-screen) – none emerged as more of a facilitator than a barrier to the acceptance of dementia screening. Seven themes emerged in relation to the patient, carer and general population: existing health state; lifestyle and life view; awareness of dementia; role of clinician; communication; benefit; and role of the family. Ten themes emerged in relation to the clinician and healthcare professional: patient’s existing health and comorbidities; awareness of dementia; confidence; duration of patient contact; suitability of screening tool; cost; disclosure; time; treatment and prognosis; and stigma.
Conclusions: As for all screening programmes, screening for dementia raises complex issues around preference and choice for clinicians and the public, and it is unclear what specific factors promote or reduce screening acceptance the most. Overall, the level of evidence is low, few large scale studies have been undertaken and none were conducted in representative samples, all affecting the generalizability of identified themes across healthcare contexts. Nevertheless, our findings suggest that population screening for dementia may not be acceptable to either the general public or health care professionals, and highlight where focused efforts are needed to gain insights into dementia specific issues.

Research paper thumbnail of 18F-FDG PET for the early diagnosis of Alzheimer’s disease dementia and other dementias in people with mild cognitive impairment (MCI) (Review)

Background 1 F-FDFG uptake by brain tissue as measured by positron emission tomography (PET) is a... more Background
1 F-FDFG uptake by brain tissue as measured by positron emission tomography (PET) is a well-established method for assessment of brain function in people with dementia. Certain findings on brain PET scans can potentially predict the decline of mild cognitive Impairment (MCI) to Alzheimer’s disease dementia or other dementias.
Objectives
To determine the diagnostic accuracy of the 1 F-FDG PET index test for detecting people with MCI at baseline who would clinically convert to Alzheimer’s disease dementia or other forms of dementia at follow-up.
Search methods
We searched the Cochrane Register of Diagnostic Test Accuracy Studies, MEDLINE, EMBASE, Science Citation Index, PsycINFO, BIOSIS previews, LILACS, MEDION, (Meta-analyses van Diagnostisch Onderzoek), DARE (Database of Abstracts of Reviews of Effects), HTA (Health Technology Assessment Database), ARIF (Aggressive Research Intelligence Facility) and C-EBLM (International Federation of Clinical Chemistry and Laboratory Medicine Committee for Evidence-based Laboratory Medicine) databases to January 2013. We checked the reference lists of any relevant studies and systematic reviews for additional studies.
Selection criteria
We included studies that evaluated the diagnostic accuracy of 1 F-FDG PET to determine the conversion from MCI to Alzheimer’s disease dementia or to other forms of dementia, i.e. any or all of vascular dementia, dementia with Lewy bodies, and fronto-temporal dementia. These studies necessarily employ delayed verification of conversion to dementia and are sometimes labelled as ‘delayed verification cross-sectional studies’.
Data collection and analysis
Two blinded review authors independently extracted data, resolving disagreement by discussion, with the option to involve a third review author as arbiter if necessary. We extracted and summarised graphically the data for two-by-two tables. We conducted exploratory analyses by plotting estimates of sensitivity and specificity from each study on forest plots and in receiver operating characteristic (ROC) space. When studies had mixed thresholds, we derived estimates of sensitivity and likelihood ratios at fixed values (lower quartile, median and upper quartile) of specificity from the hierarchical summary ROC (HSROC) models.
Main results
We included 14 studies (421 participants) in the analysis. The sensitivities for conversion from MCI to Alzheimer’s disease dementia were between 25% and 100% while the specificities were between 15% and 100%. From the summary ROC curve we fitted we estimated that the sensitivity was 76% (95% confidence interval (CI): 53.8 to 89.7) at the included study median specificity of 82%. This equates to a positive likelihood ratio of 4.03 (95% CI: 2.97 to 5.47), and a negative likelihood ratio of 0.34 (95% CI: 0.15 to 0.75). Three studies recruited participants from the same Alzheimer’s Disease Neuroimaging Initiative (ADNI) cohort but only the largest ADNI study (Herholz 2011) is included in the meta-analysis. In order to demonstrate whether the choice of ADNI study or discriminating brain region (Chételat 2003) or reader assessment (Pardo 2010) make a difference to the pooled estimate, we performed five additional analyses. At the median specificity of 82%, the estimated sensitivity was between 74% and 76%. There was no impact
on our findings. In addition to evaluating Alzheimer’s disease dementia, five studies evaluated the accuracy of 1 F-FDG PET for all types of dementia. The sensitivities were between 46% and 95% while the specificities were between 29% and 100%; however, we did not conduct a meta-analysis because of too few studies, and those studies which we had found recruited small numbers of participants. Our findings are based on studies with poor reporting, and the majority of included studies had an unclear risk of bias, mainly for the reference standard and participant selection domains. According to the assessment of Index test domain, more than 50% of studies were of poor methodological quality.
Authors’ conclusions
It is difficult to determine to what extent the findings from the meta-analysis can be applied to clinical practice. Given the considerable variability of specificity values and lack of defined thresholds for determination of test positivity in the included studies, the current
evidence does not support the routine use of 1 F-FDG PET scans in clinical practice in people with MCI. The 1 F-FDG PET scan
is a high-cost investigation, and it is therefore important to clearly demonstrate its accuracy and to standardise the process of 1 F- FDG PET diagnostic modality prior to its being widely used. Future studies with more uniform approaches to thresholds, analysis and study conduct may provide a more homogeneous estimate than the one available from the included studies we have identified.

Research paper thumbnail of Unplanned, urgent and emergency care: what are the roles that EMS plays in providing for older people with dementia? An integrative review of policy, professional recommendations and evidence

Emergency Medicine Journal, Dec 2, 2014

Objective To synthesise the existing literature on the roles that emergency medical services (EMS... more Objective To synthesise the existing literature on the roles that emergency medical services (EMS) play in unplanned, urgent and emergency care for older people with dementia (OPWD), to define these roles, understand the strength of current research and to identify where the focus of future research should lie. Design An integrative review of the synthesised reports, briefings, professional recommendations and evidence. English-language articles were included if they made any reference to the role of EMS in the urgent or emergency care of OPWD. Preparatory scoping and qualitative work with frontline ambulance and primary care staff and carers of OPWD informed our review question and subsequent synthesis.
Results Seventeen literature sources were included. Over half were from the grey literature. There was no research that directly addressed the review question. There was evidence in reports, briefings and professional recommendations of EMS addressing some of the issues they face in caring for OPWD. Three roles of EMS could be drawn out of the literature: emergency transport, assess and manage and a ‘last resort’ or safety net role. Conclusions The use of EMS by OPWD is not well understood, although the literature reviewed demonstrated a concern for this group and awareness that services are not optimum. Research in dementia care should consider the role that EMS plays, particularly if considering crises, urgent care responses and transitions between care settings. EMS research into new ways of working, training or extended paramedical roles should consider specific needs and challenges of responding to people with dementia.

Research paper thumbnail of Self-management interventions for people living with HIV/AIDS (Protocol)

This is the protocol for a review and there is no abstract. The objectives are as follows: Prima... more This is the protocol for a review and there is no abstract. The objectives are as follows:

Primary objectives: To assess the effects of self-management interventions for adults living with HIV in improving quality of life, psychological health outcomes, and health status.

Secondary objectives: To determine the effect of self-management programs on activity levels, health care utilisation, risk-taking behaviour, and experience of symptoms. To compare the effectiveness of different types of programmes, including delivery by lay person or healthcare professional.

Research paper thumbnail of Factors associated with active aging in Finland, Poland, and Spain

International Psychogeriatrics, Apr 15, 2014

Background: Continuous population aging has raised international policy interest in promoting act... more Background: Continuous population aging has raised international policy interest in promoting active aging (AA). AA theoretical models have been defined from a biomedical or a psychosocial perspective. These models may be expanded including components suggested by lay individuals. This paper aims to study the correlates of AA in three European countries, namely, Spain, Poland, and Finland using four different definitions of AA.

Research paper thumbnail of Health-related quality of life in the Cambridge City over-75s Cohort (CC75C): development of a dementia-specific scale and descriptive analyses

Background: The assessment of Health Related Quality of Life (HRQL) is important in people with d... more Background: The assessment of Health Related Quality of Life (HRQL) is important in people with dementia as it could influence their care and support plan. Many studies on dementia do not specifically set out to measure dementia-specific HRQL but do include related items. The aim of this study is to explore the distribution of HRQL by functional and socio-demographic variables in a population-based setting.

Research paper thumbnail of Non-pharmacological interventions for patients with dementia and their carers: a systematic mapping review of experimental studies involving patients living in the community

Research paper thumbnail of Young People & Mental Health: The Role of Information and Communication Technology

Sixteen stakeholders were interviewed. Participants were from the health and charity sectors, aca... more Sixteen stakeholders were interviewed. Participants were from the health and charity sectors, academia, government, and industry (12 public sector; 4 private sector). Themes emerged regarding the use of ICTs with young people:

Research paper thumbnail of Warwick-Edinburgh Mental Well-being Scale (WEMWBS) acceptability and validation in English and Scottish secondary school students (The WAVES Project)

Introduction and Background Assessing mental wellbeing (positive mental health) in addition to me... more Introduction and Background
Assessing mental wellbeing (positive mental health) in addition to mental health problems is vital in developing indicators of overall mental health. Previously, to assist in the assessment of mental wellbeing, NHS Health Scotland commissioned work which led to the development and validation of the Warwick-Edinburgh Mental Well-being Scale (WEMWBS) for adults (aged 16+). WEMWBS was found to be user-friendly and psychometrically sound as a measure of mental wellbeing in adults in the UK. We undertook this study to find out whether the scale could also be used to measure mental wellbeing for children of secondary school age. Our aim was to establish the validity, reliability and acceptability of WEMWBS in teenage school students in two secondary school year groups, aged 13-14 and 15-16 years, in two cities, one in Scotland and one in England.
Methods
After receiving ethics committee approval, we designed, piloted and administered a survey to teenagers in six schools across the two cities. The questionnaire included: socio-demographic details including family affluence; a measure of physical health; WEMWBS and comparator scales of both mental wellbeing and mental health problems (for assessment of convergent and discriminant construct validity, respectively). We analysed the results to establish how WEMWBS performed in comparison to these other measures of mental health when adjusted for relevant variables. Other psychometric properties investigated were internal consistency using Cronbach’s alpha, confirmatory factor analysis and test-retest analysis.
We additionally undertook 12 single sex focus/discussion groups (3 boys’ groups and 3 girls’ groups in each city) selected from both age groups. We designed and piloted a schedule which covered acceptability and comprehensibility of WEMWBS. Focus group meetings were taped and transcribed and analysed thematically.
Findings
One thousand six hundred and fifty teenagers completed the questionnaire with an overall response rate of 80.8%. WEMWBS scores covered the full range of possible scores (14-70) with no ceiling or floor effects and very few missing items. Both convergent and discriminant measures of construct validity gave values as predicted, with strong and significant positive correlations between WEMWBS and measures of mental wellbeing (Mental Health Continuum-Short Form (MHC-SF) correlation coefficient (CC) total score = 0.65 (95% confidence interval (CI) [0.62; 0.69]); psychological wellbeing domain of the Kidscreen-27 CC = 0.59 (95% CI [0.55; 0.62]) and WHO (Five) Well-being Index (1998 version) (WHO-5) CC = 0.57 (95% CI [0.53; 0.61]) and strong, significant negative correlations with measures of mental health problems (Strengths and Difficulties Questionnaire (SDQ) total score CC = -0.44 (95% CI [-0.49; -0.40]); and the 12-item General Health Questionnaire (GHQ12) CC = -0.45 (95% CI [-0.49; -0.40]).
There were strong internal positive correlations between WEMWBS items and a high Cronbach’s alpha (0.87 (95% CI [0.85; 0.88])). This high Cronbach’s alpha indicates good consistency of the scale between items (internal consistency). It also suggests that there may be some item redundancy and, as in adults, it may be possible to reduce the length of the scale, although this was not formally investigated. Confirmatory factor analysis demonstrated that WEMWBS contains one strong underlying factor. Taken together these two results mean that the scale is likely to be a homogeneous measure of one underlying construct – in this case mental wellbeing.
The correlation between tests and retests for WEMWBS within two weeks of original administration was slightly lower than anticipated with an intra class correlation coefficient of 0.66 (95% CI [0.59; 0.72] n = 212): a moderate rather than a strong correlation. Given our large numbers and response rate, it is unlikely that this finding of a moderate correlation is a chance one. The finding, based as it is on correlations between scores at the individual level, may mean that WEMWBS in teenagers is subject to fluctuation at this individual level although findings are stable at the population level for which the scale is intended.
There were no strong associations between WEMWBS and either age or gender in this group of teenagers, although we found significant associations with both the Family Affluence Scale score and the physical health dimension of the Kidscreen-27. We repeated all tests of validity and internal consistency, separately among those aged 14 years and under and those aged over 14 years. However, no difference was found by age. The strong psychometric properties of WEMWBS were replicated in both age groups. There were no independent effects of school, once socio- demographic differences had been taken into account.
Eighty students took part in the focus/discussion group study. The overall underlying construct of WEMWBS was understood by the majority of these teenagers. Most of the focus group participants felt that the scale was of a suitable length and that the response categories were understandable. However, whilst the overall length of the scale was acceptable, it was felt that there was some redundancy which could be removed through the amalgamation of items and some participants made suggestions for additional items to be added to the scale.
Several focus group participants found some of the individual words or terms either difficult to understand or open to misinterpretation, and some items as a whole were considered vague or unclear, for example, some students were not clear what the item ‘interested in other people’ meant. The school setting for administration of the scale also tended to confuse some participants, thus restricting the intended scope of the mental wellbeing construct.
Conclusions and recommendations
WEMWBS is suitable for use at a population level for those aged from 13 years to adulthood. Our findings suggest that it is currently the only solely positive single scale for measuring mental wellbeing which has been fully validated for use in the UK at a population level in this age group. Because of the more moderate test-retest findings and the qualitative results, we recommend that it should not be used in small scale studies of teenagers aged 13-15 with samples less than 100.
Recommendation 1: WEMWBS is suitable for use at a population level to measure mental wellbeing in teenagers amongst those aged 13 years and over. It is safe to use in samples of over 100 people.
Our study shows that WEMWBS performs well psychometrically for teenagers aged 13-16 years. However, our qualitative findings suggest that face validity could be improved. In addition, our findings suggest that individual levels of mental wellbeing may fluctuate in teenagers. An improved understanding of fluctuation in levels of both eudaimonic and hedonic constructs of mental wellbeing in this age group is needed. Whilst the length of the scale was acceptable, it may be possible to shorten it.
Recommendation 2: Measurement of mental wellbeing in teenagers would benefit from research to improve our understanding of this issue and to adapt WEMWBS to improve its face validity in this age group. Development of an adapted version should build on the quantitative and qualitative findings of the WAVES study as well as on other published research. Research should be undertaken simultaneously to identify and if necessary remove redundancy from WEMWBS for use with teenagers.
Qualitative findings suggested that the school setting for administration of the scale might confuse some participants who may be more likely to relate items concretely to the school context, thus restricting the intended more global scope of the mental wellbeing construct.
Recommendation 3: When WEMWBS is introduced to teenagers in a school environment, it is important to emphasise its holistic nature.