Community-based person-centred integrated care (PIC) networks for healthy ageing in place: a scoping review protocol.

INTRODUCTION: The economic case for preventive care delivered in or near citizens' homes is strong, and there is growing evidence of the role of local-level support in supporting people's health and well-being as they age. However, effective and consistent delivery of person-centred integrated care (PIC) at the community level remains elusive. Previous systematic reviews have focused on specific processes such as case management, but none have focused on the operational delivery of community-based care networks. In this study, we aim to identify what practice-based models of PIC networks exist at the local/neighbourhood level and what evidence is available as to their effectiveness for healthy ageing in place. METHODS AND ANALYSIS: We will undertake a scoping review following the framework proposed by Arksey and O'Malley and updated guidance by the Joanna Briggs Institute. Peer-reviewed sources will be identified through searches of seven databases, and relevant grey literature will be identified through websites of policy and voluntary sector organisations focused on integrated care and/or healthy ageing. Data from included studies will be extracted for relevance to the research questions, including aims and anticipated outcomes of network models, financial and management structures of networks, and evidence of evaluation. Summary tables and narrative comparisons of key PIC network features across settings will be presented. ETHICS AND DISSEMINATION: As no primary data will be collected, ethical approval is not required to conduct this scoping review. In addition to publication as a peer-reviewed article, the results of this review will be summarised as shorter discussion papers for use in follow-up research.

Living well while providing support: validation of LTCQ-Carer for assessing informal carers' quality of life.

PURPOSE: Despite international policies to support the health and wellbeing of informal (family) caregivers, there is no consensus on how to evaluate the effectiveness of carer support. We aimed to develop and validate a new quality-of-life measure for carers (LTCQ-Carer) and to assess its potential for use within a clinical pathway. METHODS: Psychometric properties of LTCQ-Carer were tested through cognitive interviews (qualitative phase) and a pilot survey (quantitative phase). Participants were family caregivers of people recently diagnosed with mild cognitive impairment (MCI) or dementia, recruited through one of 14 memory clinics in south-east England. They self-completed the new measure and comparative existing measures (EQ-5D, ASCOT-Carer). Ongoing feedback from memory clinic staff on potential use of LTCQ-Carer was collected. RESULTS: Interview participants (n = 10) found all draft items of LTCQ-Carer relevant and prompted inclusion of a new item on 'time to yourself'. Responses from survey participants (n = 107) indicated acceptability (low missing data), high internal reliability (Cronbach's α = 0.95), and a general construct (single factor loadings 0.43-0.86 for all items). Observation of predicted associations with EQ-5D and ASCOT-Carer supported construct validity. Responsiveness requires further testing as evidence was inconclusive. Clinical staff feedback on potential use was positive. CONCLUSION: LTCQ-Carer is a valid new measure for assessing family caregivers' quality of life across broad health and social care domains, expanding the range of high-quality tools for evaluating carer support. When used concurrently with patient assessment, it could highlight carer needs and prompt appropriate family support at the earliest point in the clinical pathway.

Understanding and Improving Older People's Well-Being through Social Prescribing Involving the Cultural Sector: Interviews from a Realist Evaluation.

Social prescribing is a non-clinical approach to addressing social, environmental, and economic factors affecting how people feel physical and/or emotionally. It involves connecting people to "community assets" (e.g., local groups, organizations, and charities) that can contribute to positive well-being. We sought to explain in what ways, for whom, and why the cultural sector can support social prescribing with older people. We conducted semi-structured interviews with 28 older people (aged 60+) and 25 cultural sector staff. The following nine concepts, developed from interview data, progressed the understanding of tailoring cultural offers, which came from our previous realist review-immersion, buddying, café culture, capacity, emotional involvement, perseverance, autonomy, elitism, and virtual cultural offers. Through tailoring, we propose that older people might experience one or more of the following benefits from engaging with a cultural offer as part of social prescribing-being immersed, psychological holding, connecting, and transforming through self-growth.

Ethnographic closeness: methodological reflections on the interplay of engagement and detachment in immersive ethnographic research.

With the reflexive turn in the social sciences, emotional engagement is an inevitable and crucial part of data-gathering and analysis. However, there is a glaring gap in methodological discussions to this end. Presenting ethnographic research into end of life with people living at home in England with heart failure, we argue for a methodological blend of engagement and detachment that shifts throughout the research process, and that sensory experience is a core part of engagement. We offer ethnographic examples which present and explore some alternatives to emotional engagement and objective detachment: (1) moving with participants to facilitate engagement during fieldwork through shared sensory experience; (2) detachment as a different way of relating when exiting the field and drawing participant relationships to a close; and (3) ethnographic closeness as the interplay of engagement and detachment in participant debriefing and data analysis. Based on well-established anthropological concepts, and taking both engagement and detachment as embodied and relational, we develop a notion of ethnographic closeness in which detachment is a necessary part. Our detailed methodological discussion thus offers theoretically grounded possibilities and alternatives for approaching and managing the core tension of 'how close is too close?' in ethnographic practice. Further contributions supporting researchers in navigating ethnographic research are needed.

Proximité ethnographique : réflexions méthodologiques sur l'interaction entre engagement et détachement dans la recherche ethnographique en immersionRésuméComposante inévitable et essentielle de la collecte et de l'analyse des données depuis le tournant réflexif pris par les sciences sociales, l'engagement émotionnel est pourtant remarquablement absent des discussions méthodologiques. En présentant leurs recherches ethnographiques sur la fin de vie à domicile de personnes insuffisantes cardiaques en Angleterre, les autrices plaident en faveur d'une méthodologie combinant engagement et détachement, dont l'équilibre est amené à changer au long du processus de recherche, et avancent que l'expérience sensorielle est une composante centrale de l'engagement. Plusieurs exemples ethnographiques décrivent et explorent quelques possibilités autres que l'engagement émotionnel et le détachement objectif : (1) bouger avec les sujets de l'enquête ethnographique, afin de faciliter l'engagement par une expérience sensorielle partagée, (2) utiliser le détachement comme un mode relationnel différent au moment de quitter le terrain et de mettre fin à la relation d'enquête (3) pratiquer une proximité ethnographique combinant engagement et détachement dans l'analyse des données et la restitution. Sur la base de concepts anthropologiques bien établis, en considérant aussi bien l'engagement que le détachement comme incarnés et relationnels, les autrices élaborent une notion de la proximité ethnographique dont le détachement est un élément nécessaire. La discussion méthodologique détaillée offre donc d'autres possibilités, fondées sur la théorie, pour approcher et gérer la tension à la limite entre « près ¼ et « trop près ¼, centrale dans la pratique ethnographique. D'autres contributions sont nécessaires pour aider les chercheurs à trouver leur chemin dans la recherche ethnographique.

Systematic review of the utility of the frailty index and frailty phenotype to predict all-cause mortality in older people.

BACKGROUND: Current guidelines for healthcare of community-dwelling older people advocate screening for frailty to predict adverse health outcomes, but there is no consensus on the optimum instrument to use in such settings. The objective of this systematic review of population studies was to compare the ability of the frailty index (FI) and frailty phenotype (FP) instruments to predict all-cause mortality in older people. METHODS: Studies published before 27 July 2022 were identified using Ovid MEDLINE, Embase, Scopus, Web of Science and CINAHL databases. The eligibility criteria were population-based prospective studies of community-dwelling older adults (aged 65 years or older) and evaluation of both the FI and FP for prediction of all-cause mortality. The Scottish Intercollegiate Guidelines Network's Methodology checklist was used to assess study quality. The areas under the receiver operator characteristic curves (AUC) were compared, and the proportions of included studies that achieved acceptable discriminatory power (AUC>0.7) were calculated for each frailty instrument. The results were stratified by the use of continuous or categorical formats of each instrument. The review was reported in accordance with the PRISMA and SWiM guidelines. RESULTS: Among 8 studies (range: 909 to 7713 participants), both FI and FP had comparable predictive power for all-cause mortality. The AUC values ranged from 0.66 to 0.84 for FI continuous, 0.60 to 0.80 for FI categorical, 0.63 to 0.80 for FP continuous and 0.57 to 0.79 for FP categorical. The proportion of studies achieving acceptable discriminatory power were 75%, 50%, 63%, and 50%, respectively. The predictive ability of each frailty instrument was unaltered by the number of included items. CONCLUSIONS: Despite differences in their content, both the FI and FP instruments had modest but comparable ability to predict all-cause mortality. The use of continuous rather than categorical formats in either instrument enhanced their ability to predict all-cause mortality.

Tailoring cultural offers to meet the needs of older people during uncertain times: a rapid realist review.

BACKGROUND: Non-medical issues (e.g. loneliness, financial concerns, housing problems) can shape how people feel physically and psychologically. This has been emphasised during the Covid-19 pandemic, especially for older people. Social prescribing is proposed as a means of addressing non-medical issues, which can include drawing on support offered by the cultural sector. METHOD: A rapid realist review was conducted to explore how the cultural sector (in particular public/curated gardens, libraries and museums), as part of social prescribing, can support the holistic well-being of older people under conditions imposed by the pandemic. An initial programme theory was developed from our existing knowledge and discussions with cultural sector staff. It informed searches on databases and within the grey literature for relevant documents, which were screened against the review's inclusion criteria. Data were extracted from these documents to develop context-mechanism-outcome configurations (CMOCs). We used the CMOCs to refine our initial programme theory. RESULTS: Data were extracted from 42 documents. CMOCs developed from these documents highlighted the importance of tailoring-shaping support available through the cultural sector to the needs and expectations of older people-through messaging, matching, monitoring and partnerships. Tailoring can help to secure benefits that older people may derive from engaging with a cultural offer-being distracted (absorbed in an activity) or psychologically held, making connections or transforming through self-growth. We explored the idea of tailoring in more detail by considering it in relation to Social Exchange Theory. CONCLUSIONS: Tailoring cultural offers to the variety of conditions and circumstances encountered in later life, and to changes in social circumstances (e.g. a global pandemic), is central to social prescribing for older people involving the cultural sector. Adaptations should be directed towards achieving key benefits for older people who have reported feeling lonely, anxious and unwell during the pandemic and recovery from it.

Social prescribing for older people and the role of the cultural sector during the COVID-19 pandemic: What are link workers' views and experiences?

Older people's well-being can be bolstered by engaging with cultural activities and venues. They may be encouraged to try cultural offers by a link worker as part of social prescribing. However, the cultural sector, like all parts of life, was affected by the COVID-19 pandemic; this has had implications for cultural offers available to link workers. A study was conducted to explore the views and experiences of link workers in using the cultural sector within social prescribing, particularly for older people (aged 60+) during the pandemic. An online questionnaire was distributed to and completed by link workers in the UK. Data were analysed mainly using descriptive statistics. Open text responses were clustered into similar ideas to create key concepts. Useable responses were received from 148 link workers. They highlighted a general lack of interaction between link workers and the cultural sector about how the latter could support social prescribing. Results suggested that personal familiarity with cultural offers might prompt link workers to refer to them. Some respondents proposed that cultural offers were regarded as elitist, which deterred them from referring there. However, there was a general acknowledgement that the cultural sector could contribute to social prescribing. Link workers need to regard the cultural sector as accessible, appropriate, adequate, affordable and available before referring older people to cultural offers as part of social prescribing. Link workers may benefit from becoming more familiar with cultural sector staff and offers, including online resources, so they can then propose them to patients with confidence.

Prion protein monoclonal antibody (PRN100) therapy for Creutzfeldt-Jakob disease: evaluation of a first-in-human treatment programme.

BACKGROUND: Human prion diseases, including Creutzfeldt-Jakob disease (CJD), are rapidly progressive, invariably fatal neurodegenerative conditions with no effective therapies. Their pathogenesis involves the obligate recruitment of cellular prion protein (PrPC) into self-propagating multimeric assemblies or prions. Preclinical studies have firmly validated the targeting of PrPC as a therapeutic strategy. We aimed to evaluate a first-in-human treatment programme using an anti-PrPC monoclonal antibody under a Specials Licence. METHODS: We generated a fully humanised anti-PrPC monoclonal antibody (an IgG4κ isotype; PRN100) for human use. We offered treatment with PRN100 to six patients with a clinical diagnosis of probable CJD who were not in the terminal disease stages at the point of first assessment and who were able to readily travel to the University College London Hospital (UCLH) Clinical Research Facility, London, UK, for treatment. After titration (1 mg/kg and 10 mg/kg at 48-h intervals), patients were treated with 80-120 mg/kg of intravenous PRN100 every 2 weeks until death or withdrawal from the programme, or until the supply of PRN100 was exhausted, and closely monitored for evidence of adverse effects. Disease progression was assessed by use of the Medical Research Council (MRC) Prion Disease Rating Scale, Motor Scale, and Cognitive Scale, and compared with that of untreated natural history controls (matched for disease severity, subtype, and PRNP codon 129 genotype) recruited between Oct 1, 2008, and July 31, 2018, from the National Prion Monitoring Cohort study. Autopsies were done in two patients and findings were compared with those from untreated natural history controls. FINDINGS: We treated six patients (two men; four women) with CJD for 7-260 days at UCLH between Oct 9, 2018, and July 31, 2019. Repeated intravenous dosing of PRN100 was well tolerated and reached the target CSF drug concentration (50 nM) in four patients after 22-70 days; no clinically significant adverse reactions were seen. All patients showed progressive neurological decline on serial assessments with the MRC Scales. Neuropathological examination was done in two patients (patients 2 and 3) and showed no evidence of cytotoxicity. Patient 2, who was treated for 140 days, had the longest clinical duration we have yet documented for iatrogenic CJD and showed patterns of disease-associated PrP that differed from untreated patients with CJD, consistent with drug effects. Patient 3, who had sporadic CJD and only received one therapeutic dose of 80 mg/kg, had weak PrP synaptic labelling in the periventricular regions, which was not a feature of untreated patients with sporadic CJD. Brain tissue-bound drug concentrations across multiple regions in patient 2 ranged from 9·9 µg per g of tissue (SD 0·3) in the thalamus to 27·4 µg per g of tissue (1·5) in the basal ganglia (equivalent to 66-182 nM). INTERPRETATION: Our academic-led programme delivered what is, to our knowledge, the first rationally designed experimental treatment for human prion disease to a small number of patients with CJD. The treatment appeared to be safe and reached encouraging CSF and brain tissue concentrations. These findings justify the need for formal efficacy trials in patients with CJD at the earliest possible clinical stages and as prophylaxis in those at risk of prion disease due to PRNP mutations or prion exposure. FUNDING: The Cure CJD Campaign, the National Institute for Health Research UCLH Biomedical Research Centre, the Jon Moulton Charitable Trust, and the UK MRC.

How active can preschoolers be at home? Parents' and grandparents' perceptions of children's day-to-day activity, with implications for physical activity policy.

BACKGROUND: The importance of physical activity in early childhood for establishing long-term health is well understood, yet with the exception of recent WHO guidelines, public health initiatives rarely focus on children below school age. Moreover, little is known about how domestic spaces and day-to-day caring activities influence preschool-age children's physical activity. To examine this, we explore caregivers' perceptions of young children's activities within and outside the home, and we consider how lived experiences of caregiving align (or not) with current physical activity policy. METHODS: Semi-structured interviews with 49 parents and grandparents from 16 families were conducted in Oregon, USA; each family had a child aged 3-5 years. Questions focused on caregivers' perceptions of and involvement with children's body weights, activities, and food practices. The interviews were analysed using thematic analysis. Our analysis drew on a materialities framework, attending to relationships between children, caregivers, spaces in and around the home, and everyday activities. RESULTS: Four themes were developed: appropriateness of outside versus inside spaces for physical activity; making accommodations for physical activity in the home; active spaces of care, referring to relationships among space, activity type, and caregiver attention; and mundane movement, or the low-intensity movement of everyday life. Together, the results highlight that children's day-to-day activities cut across a spectrum of movement, mediated by available spaces and caregiving affordances. CONCLUSIONS: Attending to the full spectrum of children's movements highlights how children's activities interlink with family routines, available indoor and outdoor spaces, and the intended uses of these spaces. These interplays between space, care, and physical activity enacted at the household level should inform an integrated, systems-level public health approach to increasing health and well-being for preschool-age children. Suggestions for improvement include coordinating policy development across multiple fields (e.g., housing design, urban planning) that structure the activities of children and their caregivers across 'home' and 'outside' spaces.

How accurate is presumptive Chlamydia trachomatis treatment? A 6-month clinical audit of a walk-in sexual health service.

Background Chlamydia trachomatis (chlamydia) is highly prevalent and is an important sexually transmitted infection as it can lead to increased risk of HIV seroconversion; and if left untreated, can cause infertility in women. Clinical guidelines recommend treating chlamydia presumptively when presenting symptomatically; however, clinicians are now questioning this due to increasing prevalence of antimicrobial resistance. Methods To determine the accuracy of presumptive chlamydia treatment practices at a walk-in sexual health service in regional Australia, we audited all same-day screen and treat presentations prescribed azithromycin over a 6-month period in 2018. Results A total of 325 cases were included in the analysis. Over half (54%) the presentations returned negative pathology for all pathogens investigated. One quarter (25%) of presentations were positive for chlamydia, and (4%) reported a dual infection. A further one fifth (20%) were negative for chlamydia but positive for another pathogen. More symptomatic males than females returned positive pathology for chlamydia (8% vs 4%). Conclusions While presumptive treatment is recommended in the current guidelines, our findings indicate this resulted in over-treatment. Considering the increasing resistance patterns for Mycoplasma genitalium, which include azithromycin, presumptive treatments need to balance immediate client care needs against long-term community antimicrobial resistance outcomes. This internal audit provided a feedback mechanism to the walk-in sexual service, enabling modification of practices to provide more precise, individual clinical care within the bounds of current STI guidelines, while balancing wider the objectives of antimicrobial stewardship.

Use of the Long-Term Conditions Questionnaire (LTCQ) for monitoring health-related quality of life in people affected by cognitive impairment including dementia: pilot study in UK memory clinic services.

PURPOSE: The aim of this study was to validate the Long-Term Conditions Questionnaire (LTCQ) among patients using memory clinic services in England. LTCQ is a short self-administered measure of 'living well with long-term conditions' that has not been previously tested in patients with cognitive impairment. METHODS: The mixed-methods study included cognitive interviews to test the comprehensibility and content validity of LTCQ from the patient's perspective, followed by a pilot survey to test the measure's internal consistency, construct validity, structural validity, and responsiveness. Participants were recruited through memory clinics following a diagnosis of mild cognitive impairment or dementia. RESULTS: Interview respondents (n = 12) all found LTCQ's content relevant, with only minor formatting modifications required. Among survey respondents (n = 105), most patients (86%) were able to self-report answers to LTCQ. High multimorbidity among the sample was associated with reduced LTCQ and EQ-5D scores. Internal consistency of LTCQ was high (Cronbach's α = 0.93), no floor or ceiling effects were observed, and missing data levels were low. Factor analysis results further supported LTCQ's structural validity, and predicted positive correlation with EQ-5D indicated construct validity. Score changes observed in a four-month follow-up survey (n = 61) are suggestive of LTCQ's responsiveness. CONCLUSION: LTCQ is a valid means of assessing health-related quality of life for people living with cognitive impairment (including dementia) in the early period of support following diagnosis. Owing to high levels of multimorbidity in this patient population, LTCQ offers an advantage over dementia-specific measures in capturing the cumulative impact of all LTCs experienced by the patient.

Paternal origins of obesity: Emerging evidence for incorporating epigenetic pathways into the social determinants of health framework.

Over the past 40 years a global discourse on population obesity has emerged, with moral outrage surrounding the rise in childhood obesity during this time. Women are portrayed as predominantly to blame for the intergenerational transmission of obesity, due to gender norms emphasising maternal responsibility during early-life events. Through a structured review of recent studies exploring epigenetic and social mechanisms of obesity risk transmission, we argue that the role of the father in influencing the obesity risk of children during early life is underappreciated. Paternal actions, embedded within a structural network of the social determinants of health, operate both pre-conception to induce epigenetic changes to the spermatozoa and during the gestational period to influence developmental programming. Paternal contributions influenced by social structures including poor diet and stress influence the subsequent metabolic functioning of the child. An examination of epigenetic pathways, operating at the nexus of genomics and human behaviour, sheds new light on shared parental responsibility for the intergenerational origins of obesity. These emergent findings call into question the effectiveness of early-life obesity interventions that focus exclusively on the mother. More broadly, an examination of the epigenetics of obesity reveals a two-way dynamic between social processes and genomic health information. On the one hand, epigenetic pathways could be an explanatory link between the social determinants of health and physiological outcomes such as obesity. Conversely, a critical appraisal of how this emerging epigenetics knowledge is debated and employed can highlight the very processes that reinforce existing gender disparities in the social determinants of health framework. Ultimately this critical appraisal could lead to a reconfiguration of research and health services agendas, towards more equitable responsibilities across genders for preventing obesity.

Using an implementation science approach to implement and evaluate patient-reported outcome measures (PROM) initiatives in routine care settings.

PURPOSE: Patient-reported outcome and experience measures (PROMs/PREMs) are well established in research for many health conditions, but barriers persist for implementing them in routine care. Implementation science (IS) offers a potential way forward, but its application has been limited for PROMs/PREMs. METHODS: We compare similarities and differences for widely used IS frameworks and their applicability for implementing PROMs/PREMs through case studies. Three case studies implemented PROMs: (1) pain clinics in Canada; (2) oncology clinics in Australia; and (3) pediatric/adult clinics for chronic conditions in the Netherlands. The fourth case study is planning PREMs implementation in Canadian primary care clinics. We compare case studies on barriers, enablers, implementation strategies, and evaluation. RESULTS: Case studies used IS frameworks to systematize barriers, to develop implementation strategies for clinics, and to evaluate implementation effectiveness. Across case studies, consistent PROM/PREM implementation barriers were technology, uncertainty about how or why to use PROMs/PREMs, and competing demands from established clinical workflows. Enabling factors in clinics were context specific. Implementation support strategies changed during pre-implementation, implementation, and post-implementation stages. Evaluation approaches were inconsistent across case studies, and thus, we present example evaluation metrics specific to PROMs/PREMs. CONCLUSION: Multilevel IS frameworks are necessary for PROM/PREM implementation given the complexity. In cross-study comparisons, barriers to PROM/PREM implementation were consistent across patient populations and care settings, but enablers were context specific, suggesting the need for tailored implementation strategies based on clinic resources. Theoretically guided studies are needed to clarify how, why, and in what circumstances IS principles lead to successful PROM/PREM integration and sustainability.

Rasch analysis of the long-term conditions questionnaire (LTCQ) and development of a short-form (LTCQ-8).

BACKGROUND: The aim of the current study was to evaluate the structural validity of the 20-item long-term conditions questionnaire (LTCQ) and to explore a potential short-form version of the scale using Rasch analysis. METHODS: Data were collected through postal surveys (February 2016-January 2017) from a sample of 1,211 participants diagnosed with at least one long-term condition (LTC). Identified participants were invited through either local authorities for a social care cohort (n = 294) or primary care practices for a health care cohort (n = 917). Participants were mailed a survey, including the LTCQ, demographic questions, a comorbidities measure, and other validated outcome measures. Respondents were invited to complete a follow-up survey including the LTCQ for assessment of reproducibility. RESULTS: The main assumptions of the Rasch model from the LTCQ were fulfilled, although infit and outfit indices indicated some items showed misfit. Misfitted items, items that did not have a preceding set or showed some local dependence were removed one at a time, with the remaining candidate items to form an 8-item short version, the LTCQ-8. The Rasch model for the LTCQ-8 explained 64% variance and had a reliability estimate greater than 0.80. Several items in the LTCQ showed uniform differential item function (DIF) in relation to the number of reported LTCs, age, cohort and type of LTCs, but fewer items exhibited DIF in the LTCQ-8. Spearman's rho correlations between the LTCQ and the LTCQ-8 were strong across the total sample and various subgroups. Correlations between the LTCQ-8 and all reference measures were moderate to strong, and comparable to correlations found between the LTCQ and these measures. CONCLUSIONS: The LTCQ measures a unidimensional construct, and it is therefore acceptable to use a summed total score. The LTCQ-8 also met the assumption of unidimensionality and had comparable construct validity with the LTCQ. Additional validation is required in an independent sample.

Transforming a PICU Into an Adult ICU During the Coronavirus Disease 2019 Pandemic: Meeting Multiple Needs.

We describe the process converting half of our 40-bed PICU into a negative-pressure biocontainment ICU dedicated to adult coronavirus disease 2019 patients within a 1,003-bed academic quaternary hospital. We outline the construction, logistics, supplies, provider education, staffing, and operations. We share lessons learned of working with a predominantly pediatric staff blended with adult expertise staff while maintaining elements of family-centered care typical of pediatric critical care medicine. Critically ill coronavirus disease 2019 adult patients may be cared for in a PICU and care may be augmented by implementing elements of holistic, family-centered PICU practice.

Estimating EQ-5D utilities based on the Short-Form Long Term Conditions Questionnaire (LTCQ-8).

PURPOSE: The aim of this work was to develop a mapping algorithm for estimating EuroQoL 5 Dimension (EQ-5D) utilities from responses to the Long-Term Conditions Questionnaire (LTCQ), thus increasing LTCQ's potential as a comprehensive outcome measure for evaluating integrated care initiatives. METHODS: We combined data from three studies to give a total sample of 1334 responses. In each of the three datasets, we randomly selected 75% of the sample and combined the selected random samples to generate the estimation dataset, which consisted of 1001 patients. The unselected 25% observations from each dataset were combined to generate an internal validation dataset of 333 patients. We used direct mapping models by regressing responses to the LTCQ-8 directly onto EQ-5D-5L and EQ-5D-3L utilities as well as response (or indirect) mapping to predict the response level that patients selected for each of the five EQ-5D-5L domains. Several models were proposed and compared on mean squared error and mean absolute error. RESULTS: A two-part model with OLS was the best performing based on the mean squared error (0.038) and mean absolute error (0.147) when estimating the EQ-5D-5L utilities. A multinomial response mapping model using LTCQ-8 responses was used to predict EQ-5D-5L responses levels. CONCLUSIONS: This study provides a mapping algorithm for estimating EQ-5D utilities from LTCQ responses. The results from this study can help broaden the applicability of the LTCQ by producing utility values for use in economic analyses.

Self-efficacy and health-related quality of life: a cross-sectional study of primary care patients with multi-morbidity.

BACKGROUND: Multi-morbidity in chronic long-term conditions is a major concern for health services. Self-management in concert with clinical care forms part of the effective management of multi-morbidity. Self-efficacy is a mechanism through which self-management can be achieved. Quality of life is adversely impacted by multi-morbidity but could be improved by effective self-management. This study examines the relationship between self-efficacy and quality of life in primary care patients with multi-morbidity. METHODS: A cross-sectional survey was conducted with primary care patients in England. Potential participants were mailed a questionnaire containing quality of life measures (the EQ-5D-5L and the Long-Term Conditions Questionnaire (LTCQ)), the Disease Burden Impact Scale (DBIS) and the Self-efficacy for Managing Chronic Disease Scale. Descriptive statistics, analysis of variance and linear regression analyses were conducted to examine the relationship between quality of life (dependent variable), self-efficacy, and demographic and disease-related variables. RESULTS: The 848 participants living with multi-morbidity reported a mean of 6.46 (SD 3.49) chronic long-term conditions, with the mean number of physical conditions 5.99 (SD 3.34) and mental health conditions 0.47 (SD 0.66). The mean scores were 15.45 (SD 12.00) for disease burden, 0.69 (SD 0.28) for the EQ-5D-5L, 65.44 (SD 23.66) for the EQ-VAS, and 69.31 (SD 21.77) for the LTCQ. The mean self-efficacy score was 6.69 (SD 2.53). The regression models were all significant at p < 0.001 (adjusted R2 > 0.70). Significant factors in all models were self-efficacy, disease burden and being permanently sick or disabled. Other factors varied between models, with the most notable being the presence of a mental health condition in the LTCQ model. CONCLUSIONS: Multi-morbid primary care patients with lower self-efficacy and higher disease burden have lower quality of life. Awareness of self-efficacy levels among patients with multi-morbidity may help health professionals identify patients who are in need of enhanced self-management support. Providing self-management support for chronic disease has been hailed as a hallmark of good care. Higher self-efficacy may lead to enhanced quality of life in multi-morbidity.

Quality of life and burden of morbidity in primary care users with multimorbidity.

PURPOSE: The aim of this study was to assess the quality of life, number of diseases and burden of morbidity of multimorbid primary care users and whether a simple disease count or a multimorbidity burden score is more predictive of quality of life. PATIENTS AND METHODS: Primary care patients with at least 1 of 11 specified chronic conditions were invited to participate in a postal survey. Participants completed the Disease Burden Impact Scale (DBIS) questionnaire, the five dimension-five level Euro-Qol (EQ-5D-5L) and standard demographics questions. The DBIS asks participants to self-report chronic conditions and to rate the impact of each condition. Descriptive statistics and analysis of variance were used to determine quality of life, count of diseases and burden of morbidity. Multiple linear regression analyses determined whether disease count or the DBIS, adjusted for demographics, was more predictive of the EQ-5D-5L scores. RESULTS: Thirty-one percent (n=917) responded, from which 69 were excluded as they reported no or only one condition, leaving 848 (92%) in the analysis. Slightly more women (50.9%) participated; the mean age was 67.0 (SD 13.9) and the mean number of conditions was 6.5 (SD 3.49). The mean scores were: DBIS 15.5 (SD 12.00; score range 0-140, with higher scores indicating higher multimorbidity burden), EQ-5D-5L score 0.69 (SD 0.28; score range -0.28 [a state worse than death] to 1 [best possible health state]) and EQ-5D Visual Analog Scale (EQ-VAS) 65.44 (SD 23.66; score range 0-100 with higher scores meaning better health). The model using the DBIS score was more predictive of the EQ-5D-5L score and EQ-VAS than the model using the disease count (R2adj=0.53 using DBIS and R2adj=0.42 using disease count for EQ-5D-5L score, and R2adj=0.44 using DBIS versus R2adj=0.34 using disease count for EQ-VAS). All models were statistically significant (p<0.001). CONCLUSION: The DBIS is a useful measure for assessing multimorbidity from the perspective of primary care users in particular, as it is more predictive of health outcomes than a simple count of conditions.

The context of coping: a qualitative exploration of underlying inequalities that influence health services support for people living with long-term conditions.

Coping with chronic illness encapsulates both practical and emotional aspects of living life in relation to one's long-term health condition(s). Dominant health psychology approaches for understanding coping, which underpin a more recent policy discourse on 'self-management', focus sharply on the person affected by illness and potentially mask the influence of overarching social structure. In this paper we draw on qualitative interviews with 48 people living with long-term conditions (LTCs), in order to highlight the role that structural configurations such as healthcare systems may play in either helping or hindering people's efforts to cope with chronic illness. We argue that coping is a social process in which health and related services, situated within their wider political-economic contexts, play an active role in shaping people's attempts to live well with LTCs. More specifically, health systems are sites of social and cultural capital exchange that can differentially mobilise coping resources through access, continuity of care, and coordination across services. Whilst it is essential to recognise the personal agency of people living with chronic illness, it is also vital to acknowledge the underlying inequalities that affect the ways in which services can support such resourcefulness.