Preferences for interventions designed to increase cervical screening uptake in non-attending young women: how findings from a discrete choice experiment compare with observed behaviours in a trial

Background Young women’s attendance at cervical screening in the UK is continuing to fall and the incidence of invasive cervical cancer has begun to rise. Objectives We assessed the preferences of non-attending young women for alternative ways of delivering cervical screening. Design Postal discrete choice experiment (DCE) conducted during the STRATEGIC study of interventions for increasing cervical screening uptake. Attributes included action required to arrange a test, location of the test, availability of a nurse navigator and cost to the NHS. Setting and participants Non-attending young women in two UK regions. Main outcome measures Responses were analysed using a mixed multinomial logit model. A predictive analysis identified the most preferable strategy compared to current screening. Preferences from the DCE were compared with women’s observed behaviours during the STRATEGIC trial. Results The DCE response rate was 5.5% (222/4000) and 94% of respondents agreed screening is important. Preference heterogeneity existed around all attributes with strong evidence for test location. Relative to current screening, unsolicited self-sampling kits for home use appeared most preferable. The STRATEGIC trial showed this same intervention to be most effective although many women who received it and were screened attended for conventional cytology instead. Conclusions The DCE and trial identified the unsolicited self-sampling kit as the most preferred / effective intervention. Data from the DCE suggested that the decision of some women receiving the kit in the trial to attend for conventional cytology may be due to anxieties around home testing coupled with a knowledge that ignoring the kit could potentially have life changing consequences. Keywords: cervical cancer; screening uptake; young women; preferences; discrete choice experiments; heterogeneity; United Kingdo

Occupational Therapy for South Asian Older Adults in the United Kingdom: Cross-Cultural Issues

Introduction There is limited understanding of the cultural needs of diverse Black and Minority Ethnic populations such as South Asian older adults, which may be perpetuating occupational injustices and health inequalities faced by these groups. Although cultural considerations are intrinsic to person-centred occupational therapy and increasingly relevant to the changing landscape of health and social care, the profession is criticised for its western-centric focus. This study aimed to gain understanding of the current cross-cultural issues in supporting South Asian older adults in the UK, as perceived by occupational therapists. Method A constructivist qualitative design supported by thematic analysis was used, involving seven occupational therapists in the United Kingdom who participated in semi-structured interviews via Skype/telephone. Findings Cross-cultural issues were illustrated through the following themes: ‘when the barriers go down’ – cultural mismatch in individualist vs. collectivist worldviews; ‘invasion of the family home’ – cultural inappropriateness of standard interventions; and ‘I go into every assessment assuming nothing’ – recognition of and response to challenges. Conclusion This study provides insight into cross-cultural issues in occupational therapy for South Asian older adults, revealing a gap between theory and practice in integrating cultural humility. It highlights the need for a more inclusive, person-centred approach to support culturally diverse populations

Finding the Forgotten: Motivating Military Veterans to Register with a Primary Healthcare Practice

This is a pre-copyedited, author-produced PDF of an article accepted for publication in Military Medicine following peer review. The version of record Finnegan A, Jackson, R & Simpson, R (2018 - in press) Finding the Forgotten: Motivating Military Veterans to Register with a Primary Healthcare. Military Medicine is available online at: https://doi.org/10.1093/milmed/usy086Introduction: In the UK, primary healthcare practices choose from a series of Read codes to detail certain characteristics onto a patient's medical documentation. One of these codes is for military veterans indicating a history relating to military service. However, veterans are poor at seeking help, with research indicating that this code is only applied in 7.9% of cases. Clinical staff have a clear role in motivating veterans to declare their ex-Forces status or register with a primary healthcare center. The aim of this study was to motivate veterans to notify primary healthcare staff of their armed forces status or register with a general practitioner, and to improve primary healthcare staff's understanding of veterans' health and social care issues. Materials and Methods: Data were provided by four primary healthcare centers' containing 40,470 patients in Lancashire, England during 2017. Pre- and post-patient medical record Read Code searches were conducted either side of a 6-wk intervention period centered on an advertising campaign. The data identified those veterans with the military specific Read code attached to their medical record and their age, gender, marital status and mental health disorders. Further information was gathered from interviews with eight members of staff, some of whom had completed an e-learning veteran healthcare academic module. The study was approved by the University of Chester's Research Ethics Committee. Results: The pre-intervention search indicated that 8.7% (N = 180) of veterans were registered and had the correct military specific code applied to their medical record. Post-intervention, this figure increased by nearly 200% to N = 537. Mental health disorders were present in 28% (N = 152) of cases, including 15% (N = 78) with depression. Interviews revealed the primary healthcare staff's interpretation of the factors that motivated patients to declare their ex-Forces status and the key areas for development. Conclusion: The primary healthcare staff took ownership and responsibility for this initiative. They were creative in introducing new ways of engaging with the local armed forces community. Many veterans' and staff were unaware of veterans' entitlement to priority medical services, or the wider provisions available to them. It is probable that veterans declaring their military status within primary healthcare, or registering with a general practitioner for the first time is likely to increase. Another review will be undertaken after 12 mo, which will provide a better indication of success. There remains however an ongoing need to reach out to those veterans who never access a primary healthcare practice. This paper adds to the limited international empirical evidence undertaken to explore help-seeking behavior in an armed forces community. The positive outcomes of increased awareness and staff commitment provide a template for improvement across the UK, and will potentially stimulate similar initiatives with international colleagues

New Horizons in the use of routine data for ageing research

The past three decades have seen a steady increase in the availability of routinely collected health and social care data and the processing power to analyse it. These developments represent a major opportunity for ageing research, especially with the integration of different datasets across traditional boundaries of health and social care, for prognostic research and novel evaluations of interventions with representative populations of older people. However, there are considerable challenges in using routine data at the level of coding, data analysis and in the application of findings to everyday care. New Horizons in applying routine data to investigate novel questions in ageing research require a collaborative approach between clinicians, data scientists, biostatisticians, epidemiologists and trial methodologists. This requires building capacity for the next generation of research leaders in this important area. There is a need to develop consensus code lists and standardised, validated algorithms for common conditions and outcomes that are relevant for older people to maximise the potential of routine data research in this group. Lastly, we must help drive the application of routine data to improve the care of older people, through the development of novel methods for evaluation of interventions using routine data infrastructure. We believe that harnessing routine data can help address knowledge gaps for older people living with multiple conditions and frailty, and design interventions and pathways of care to address the complex health issues we face in caring for older people

A web-based self-management programme for people with type 2 diabetes : the HeLP-Diabetes research programme including RCT

Background: In the UK, 6% of the UK population have diabetes mellitus, 90% of whom have type 2 diabetes mellitus (T2DM). Diabetes mellitus accounts for 10% of NHS expenditure (£14B annually). Good self-management may improve health outcomes. NHS policy is to refer all people with T2DM to structured education, on diagnosis, to improve their self-management skills, with annual reinforcement thereafter. However, uptake remains low (5.6% in 2014–15). Almost all structured education is group based, which may not suit people who work, who have family or other caring commitments or who simply do not like group-based formats. Moreover, patient needs vary with time and a single education session at diagnosis is unlikely to meet these evolving needs. A web-based programme may increase uptake. / Objectives: Our aim was to develop, evaluate and implement a web-based self-management programme for people with T2DM at any stage of their illness journey, with the goal of improving access to, and uptake of, self-management support, thereby improving health outcomes in a cost-effective manner. Specific objectives were to (1) develop an evidence-based theoretically informed programme that was acceptable to patients and health-care professionals (HCPs) and that could be readily implemented within routine NHS care, (2) determine the clinical effectiveness and cost-effectiveness of the programme compared with usual care and (3) determine how best to integrate the programme into routine care. / Design: There were five linked work packages (WPs). WP A determined patient requirements and WP B determined HCP requirements for the self-management programme. WP C developed and user-tested the Healthy Living for People with type 2 Diabetes (HeLP-Diabetes) programme. WP D was an individually randomised controlled trial in primary care with a health economic analysis. WP E used a mixed-methods and case-study design to study the potential for implementing the HeLP-Diabetes programme within routine NHS practice. / Setting: English primary care. / Participants: People with T2DM (WPs A, D and E) or HCPs caring for people with T2DM (WPs B, C and E). / Intervention: The HeLP-Diabetes programme; an evidence-based theoretically informed web-based self-management programme for people with T2DM at all stages of their illness journey, developed using participatory design principles. / Main outcome measures: WPs A and B provided data on user ‘wants and needs’, including factors that would improve the uptake and accessibility of the HeLP-Diabetes programme. The outcome for WP C was the HeLP-Diabetes programme itself. The trial (WP D) had two outcomes measures: glycated haemoglobin (HbA1c) level and diabetes mellitus-related distress, as measured with the Problem Areas in Diabetes (PAID) scale. The implementation outcomes (WP E) were the adoption and uptake at clinical commissioning group, general practice and patient levels and the identification of key barriers and facilitators. / Results: Data from WPs A and B supported our holistic approach and addressed all areas of self-management (medical, emotional and role management). HCPs voiced concerns about linkage with the electronic medical records (EMRs) and supporting patients to use the programme. The HeLP-Diabetes programme was developed and user-tested in WP C. The trial (WP D) recruited to target (n = 374), achieved follow-up rates of over 80% and the intention-to-treat analysis showed that there was an additional improvement in HbA1c levels at 12 months in the intervention group [mean difference –0.24%, 95% confidence interval (CI) –0.44% to –0.049%]. There was no difference in overall PAID score levels (mean difference –1.5 points, 95% CI –3.9 to 0.9 points). The within-trial health economic analysis found that incremental costs were lower in the intervention group than in the control group (mean difference –£111, 95% CI –£384 to £136) and the quality-adjusted life-years (QALYs) were higher (mean difference 0.02 QALYs, 95% CI 0.000 to 0.044 QALYs), meaning that the HeLP-Diabetes programme group dominated the control group. In WP E, we found that the HeLP-Diabetes programme could be successfully implemented in primary care. General practices that supported people in registering for the HeLP-Diabetes programme had better uptake and registered patients from a wider demographic than those relying on patient self-registration. Some HCPs were reluctant to do this, as they did not see it as part of their professional role. / Limitations: We were unable to link the HeLP-Diabetes programme with the EMRs or to determine the effects of the HeLP-Diabetes programme on users in the implementation study. / Conclusions: The HeLP-Diabetes programme is an effective self-management support programme that is implementable in primary care. / Future work: The HeLP-Diabetes research team will explore the following in future work: research to determine how to improve patient uptake of self-management support; develop and evaluate a structured digital educational pathway for newly diagnosed people; develop and evaluate a digital T2DM prevention programme; and the national implementation of the HeLP-Diabetes programme. / Trial registration: Research Ethics Committee reference number 10/H0722/86 for WPs A–C; Research Ethics Committee reference number 12/LO/1571 and UK Clinical Research Network/National Institute for Health Research (NIHR) Portfolio 13563 for WP D; and Research Ethics Committee 13/EM/0033 for WP E. In addition, for WP D, the study was registered with the International Standard Randomised Controlled Trial Register as reference number ISRCTN02123133. / Funding details: This project was funded by the NIHR Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 6, No. 5. See the NIHR Journals Library website for further project information

A randomised controlled trial to evaluate the impact of a human rights based approach to dementia care in inpatient ward and care home settings

BackgroundAlthough it is widely recognised that adopting a person-centred approach is beneficial in the care of people living with dementia, a gap remains between the rhetoric and the reality of quality care. Some widely adopted care practices can result in the personhood of this group being threatened and their human rights being undermined.ObjectivesTo evaluate the impact of applying a human rights based approach in dementia inpatient wards and care homes on the quality of care delivered and the well-being of the person living with dementia.DesignA cluster randomised design was employed to compare the impact of implementing a human rights based approach intervention (i.e. training, applying the ‘Getting It Right’ assessment tool and receiving booster sessions) at 10 intervention sites with 10 control sites.SettingEight NHS dementia inpatient wards and 12 care homes in the north-west of England.ParticipantsPeople living with dementia who were residing on dementia inpatient wards or in care homes, and staff working at these sites. The aim was to recruit 280 people living with dementia.InterventionsA sample of staff (an average of 8.9 per site) at each of the sites was trained in a human rights based approach to care, including the application of the ‘Getting It Right’ assessment tool. The tool was then introduced at the site and monthly booster sessions were delivered.Main outcome measuresThe primary outcome measure used in the research was the Quality of Life in Alzheimer’s Disease scale to assess the subjective well-being of the person with dementia. Secondary outcome measures included measures of the quality of care provided (dementia care mapping) and direct measures of the effectiveness of the training in increasing knowledge of and attitudes towards human rights. The study also included an economic evaluation utilising the EuroQol-5 Dimensions, three-level version, and the Adult Social Care Outcomes Toolkit measure.ResultsThe study recruited 439 people living with dementia: 213 to the intervention arm and 226 to the control arm. Primary outcome data were analysed using a linear mixed model. There were no significant differences found in the reported quality of life of residents between the control and intervention groups after the intervention [F(1,16.51) = 3.63;p = 0.074]. The mean difference between the groups was 1.48 (95% confidence interval –7.86 to 10.82).ConclusionsDespite the fact that the training increased staff knowledge of and positive attitudes towards human rights, and although there were some changes in staff decision-making strategies in clinical situations, there was no change in the quality of care provided or in the reported well-being of people living with dementia in these settings. This led to questions about the efficacy of training in bringing about cultural change and improving care practices.LimitationsThere was limited uptake of the training and booster sessions that were integral to the intervention.Future workFuture work could usefully focus on understanding the difficulty in translating change in attitude and knowledge into behaviour.Trial registrationCurrent Controlled Trials ISRCTN94553028.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full inHealth Services and Delivery Research; Vol. 6, No. 13. See the NIHR Journals Library website for further project information.</jats:sec

Children's toothache is becoming everybody's business: where do parents go when their children have oral pain in London, England? A cross-sectional analysis.

OBJECTIVES: To assess the number of parents who visited community pharmacies in London seeking pain medications for their children's pain and specifically for oral pain, to identify which health services parents contacted before their pharmacy visit and to estimate the cost to the National Health Service (NHS) when children with oral pain who visit pharmacies also see health professionals outside dentistry. DESIGN: A cross-sectional study. SETTING: 1862 pharmacies in London in November 2016-January 2017. PARTICIPANTS: Parents, carers and adolescents purchasing over-the-counter pain medications or collecting pain prescriptions for children (0-19 years). BRIEF INTERVENTION: A survey administered by pharmacy staff to participants and a guidance pack. MAIN OUTCOME MEASURES: The number of parents who visited pharmacies seeking pain medications for their children's pain and oral pain and the number of parents who contacted health professionals outside dentistry before their pharmacy visit. Estimated costs of visits by children with oral pain to health professionals outside dentistry. RESULTS: One in two (951) pharmacies participated collecting information from 6915 parents seeking pain medications for their children. The majority (65%) of parents sought pain medications to relieve their children's oral pain. Only 30% of children with oral pain had seen a dentist before the pharmacy visit, while 28% of children had seen between one and four different health professionals. The cost to the NHS of children contacting health professionals outside dentistry was £36 573, extrapolated to an annual cost of £373 288. Replicating these findings across all pharmacies in England could mean that the NHS spends an estimated £2.3 million annually when children with oral pain inappropriately use multiple health services. CONCLUSION: Most parents who visited pharmacies for children's pain medications in London sought pain medications for children's oral pain. Children's inappropriate contact with multiple health services when they have oral pain adds significant costs to the NHS.This research was funded by NHS England London Region. Donal Markey was partly funded by Healthy London Partnerships