Assessing progress in managing and improving quality in nascent integrated care systems in England.

OBJECTIVES: In 2022, England embarked on an ambitious reorganisation to produce an integrated health and care system, intended also to maximise population health. The newly created integrated care systems (ICSs) aim to improve quality of care, by achieving the best outcomes for individuals and populations through the provision of evidence-based services. An emerging approach for managing quality in organisations is the Quality Management System (QMS) framework. Using the framework, this study assessed how ICSs are managing and improving quality. METHODS: Four ICSs were purposively sampled, with the data collected between November 2021 and May 2022. Semi-structured interviews with system leaders (n=60) from health and social care, public health and local representatives were held. We also observed key ICS meetings and reviewed relevant documents. A thematic framework approach based on the QMS framework was used to analyse the data. RESULTS: The ICSs placed an emphasis on population health, reducing inequity and improving access. This represents a shift in focus from the traditional clinical approach to quality. There were tensions between quality assurance and improvement, with concerns that a narrow focus on assurance would impede ICSs from addressing broader quality issues, such as tackling inequalities and unwarranted variation in care and outcomes. Partnerships, a key enabler for integration, was seen as integral to achieving improvements in quality. Overall, the ICSs expressed concerns that any progress made in quality development and in improving population health would be tempered by unprecedented system pressures. CONCLUSION: It is unclear whether ICSs can achieve their ambition. As they move away from an assurance-dominated model of quality to one that emphasises openness, learning and improvement, they must simultaneously build the digital infrastructure, staff expertise and culture to support such a shift.

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.

The core outcomes for open lower limb fracture study.

Aims: A core outcome set for adult, open lower limb fracture has been established consisting of 'Walking, gait and mobility', 'Being able to return to life roles', 'Pain or discomfort', and 'Quality of life'. This study aims to identify which outcome measurement instruments (OMIs) should be recommended to measure each core outcome. Methods: A systematic review and quality assessment were conducted to identify existing instruments with evidence of good measurement properties in the open lower limb fracture population for each core outcome. Additionally, shortlisting criteria were developed to identify suitable instruments not validated in the target population. Candidate instruments were presented, discussed, and voted on at a consensus meeting of key stakeholders. Results: The Wales Lower Limb Trauma Recovery scale was identified, demonstrating validation evidence in the target population. In addition, ten candidate OMIs met the shortlisting criteria. Six patients, eight healthcare professionals, and 11 research methodologists attended the consensus meeting. Consensus was achieved for the EuroQol five-dimension five-level questionnaire (EQ-5D-5L) and the Lower Extremity Functional Scale (LEFS) to measure 'Quality of life' and 'Walking, gait and mobility' in future research trials, audit, and clinical assessment, respectively. No instrument met consensus criteria to measure 'Being able to return to life roles' and 'Pain or discomfort'. However, the EQ-5D-5L was found to demonstrate good face validity and could also be used pragmatically to measure these two outcomes, accepting limitations in sensitivity. Conclusion: This study recommends the LEFS and EQ-5D-5L to measure the core outcome set for adult open lower limb fracture.

An exploration of hospital pharmacists' attitudes and opinions towards undertaking research.

OBJECTIVES: This research aimed to explore the attitudes and opinions of hospital pharmacists to undertaking research to understand the drivers, drawbacks, barriers and enablers to engagement and explore the characteristics of research-active pharmacy departments. METHODS: A qualitative approach was employed using case study methodology where interviews were undertaken with the chief pharmacist and a cohort of research-active pharmacists at four secondary care NHS Trusts. Each of the four case study sites had high levels of research activity among pharmacists and a model of support for them to undertake research. KEY FINDINGS: Research experience was identified as a significant driver, as was a pharmacy department having a research culture. Drawbacks identified related to the impact of research on service delivery, and the difficulty associated with backfilling posts with funding from grants. Lack of time, difficulty obtaining funding, lack of personal competence and research not being prioritised were identified as barriers to engagement, as were a lack of understanding and awareness of research and a lack of appreciation of its value. Key enablers included having time to conduct research and having access to individuals with research expertise. Research-active pharmacy departments all had a supportive chief pharmacist, a culture for research and mechanisms of support in place. CONCLUSIONS: To increase research engagement among pharmacists in the hospital sector, there needs to be cultural change at a professional level to drive engagement and give individuals the time and skills to be undertake research.

Development of a core outcome set for open lower limb fracture.

Open lower limb fracture is life-changing, resulting in substantial morbidity and resource demand, while inconsistent outcome-reporting hampers systematic review and meta-analysis. A core outcome set establishes consensus among key stakeholders for the recommendation of a minimum set of outcomes. This study aims to define a core outcome set for adult open lower limb fracture. Candidate outcomes were identified from a previously published systematic review and a secondary thematic analysis of 25 patient interviews exploring the lived experience of recovery from open lower limb fracture. Outcomes were categorized and sequentially refined using healthcare professional and patient structured discussion groups. Consensus methods included a multi-stakeholder two-round online Delphi survey and a consensus meeting attended by a purposive sample of stakeholders, facilitated discussion, and voting using a nominal group technique. Thematic analysis and systematic review identified 121 unique outcomes, reduced to 68 outcomes following structured discussion groups. Outcomes were presented to 136 participants who completed a two-round online Delphi survey. The Delphi survey resulted in 11 outcomes identified as consensus 'in' only. All outcomes were discussed at a consensus meeting attended by 15 patients, 14 healthcare professionals, 11 researchers, and one patient-carer. Consensus was achieved for a four-core outcome set: 'Walking, gait and mobility', 'Being able to return to life roles', 'Pain or discomfort', and 'Quality of life'. This study used robust consensus methods to establish a core outcome set that should be measured in all future research studies and audits of clinical practice without precluding the measurement of additional outcomes.

Burden of cancer trial participation: A qualitative sub-study of the INTERIM feasibility RCT.

OBJECTIVE: A qualitative sub-study was carried out within a larger phase II feasibility trial, to identify and describe the burden experienced by advanced melanoma patients participating in a clinical trial and the factors affecting their capacity to cope with the burden. METHODS: Semi-structured interviews were conducted with fourteen patients with advanced melanoma recruited from National Health Service hospitals in the United Kingdom. Qualitative analysis was undertaken using a framework analysis approach. Normalisation process theory was applied to the concept of research participation burden in order to interpret and categorise findings. RESULTS: Burdens of participation were identified as arising from making sense of the trial and treatment; arranging transport, appointment and prescriptions; enacting management strategies and enduring side effects; reflecting on trial documents and treatment efficacy, and emotional and mental effects of randomisation and treatment side effects. Factors reported as influencing capacity include personal attributes and skills, physical and cognitive abilities and support network. DISCUSSION: This is the first study to highlight the substantial burden faced by patients with advanced melanoma in a clinical trial and factors that may lessen or worsen the burden. Consideration of identified burdens during trial design and execution will reduce the burden experienced by research participants.

Understanding the Impact of a New Approach to the Safeguarding of Children at Risk: An Evaluation Protocol.

Introduction: Child Safeguarding Services intervene in situations where a child is at risk of serious emotional or physical harm. The response will vary according to the level of risk, but in serious cases, a child may need to be removed from danger and cared for by foster parents either temporarily or permanently. The number of children being taken into care has increased markedly in recent years in the United Kingdom. Oxfordshire County Council (OCC) is implementing a new approach to the welfare of children (Family Solutions Plus; FSP) in which the focus is to support the whole family and ideally reduce the need for foster care.In this paper, we describe a proposed programme of evaluation to examine the impact of FSP on the time children are in contact with services, the nature of the support provided, experience of children and families, the experience of staff, and longer term outcomes for children, particularly whether they remain within the family or need to be cared for outside the home. Methods and analysis: A mixed methods approach will be taken in an observational retrospective study of children's social care services. Quantitative research will include descriptive analysis on data routinely collected by OCC, examining the effect on time spent in services, outcomes for children and how these outcomes are mediated by family characteristics and circumstances. Qualitative research will be carried out using individual interviews and focus groups with children, families and staff in the teams providing family safeguarding services to capture their experiences with the new model. Ethics and dissemination: This project has been registered with the OCC as a service evaluation. The qualitative studies will seek ethical approval from Oxford University Ethics Committee. A local data sharing agreement will govern the transfer of quantitative data. Results will be disseminated through newsletters, community forums, professional publications and conference presentations to national and international audiences.

Assessing the Validity of the Long-Term Conditions Questionnaire (LTCQ) in Women During Pregnancy and the First Year Following Birth.

Background: The aim of this study was to validate a generic patient-reported outcome measure, the Long-Term Conditions Questionnaire (LTCQ), among pregnant and postpartum women living with a pre-existing long-term condition (LTC). Methods: Cognitive interviews were conducted with women who were currently pregnant or had given birth within the past year and living with a pre-existing LTC (n=11) and with healthcare professionals working in maternal care (n=11) to explore the acceptability of LTCQ items. An online survey was subsequently administered among women who were pregnant or had given birth within the past year and living with a pre-existing LTC (n=718). Tests of validity were performed including assessing correlations between the LTCQ and reference measures, the Well-being in Pregnancy (WiP) Questionnaire and the EuroQol EQ-5D-5L. Internal consistency was assessed using the Cronbach's alpha statistic. Results: All LTCQ items were considered relevant and appropriate for use with women who were pregnant or had given birth within the past year. The most commonly reported LTC among the online survey sample (n=718) was a mental health condition (n=350, 48.7%) followed by joint, bone and connective tissues (n= 212, 29.5%) and gastrointestinal (n=143, 19.9%) condition. Data indicated LTCQ scores behaved in a predictable pattern, demonstrating poorer scores for women reporting a greater number of LTCs; mean (SD) scores, one LTC= 61.86 (17.8), two LTCs= 55.29 (16.0), three LTCs= 49.84 (15.52) and four LTCs= 44.94 (12.2). Poorer scores were also reported for women living with at least one mental health condition compared to those reporting no mental health condition, mean score = 66.18 (SD 16.7) v 48.64 (SD 13.3), p<0.001 respectively. As anticipated, LTCQ scores demonstrated significant correlations in the expected direction with both the EQ-5D-5L and WiP scores. For all LTCQ items, the Cronbach's alpha statistic was 0.93. Conclusion: Data presented here indicate that the LTCQ, which assesses living well with one or more LTC, is suitable for use among pregnant and postpartum women, from both the woman's perspective and from the perspectives of maternity healthcare professionals. Use of the LTCQ would facilitate the identification of unmet needs within this high-risk cohort and support the exploration of how LTCs may affect women throughout the pregnancy and post-natal period. Understanding unmet needs within this cohort of women provides an opportunity to link up specialist care within maternity services and enhance personalised care.

Commissioning [Integrated] Care in England: An Analysis of the Current Decision Context.

Background: The emergence of Integrated Care Systems (ICSs) across England poses an additional challenge and responsibility for local commissioners to accelerate the implementation of integrated care programmes and improve the overall efficiency across the system. To do this, ICS healthcare commissioners could learn from the experience of the former local commissioning structures and identify areas of improvement in the commissioning process. This study describes the investment decision process in integrated care amid the transition toward ICSs, highlights challenges, and provides recommendations to inform ICSs in their healthcare commissioning role. Methods: Twenty-six semi-structured interviews were conducted with local commissioners and other relevant stakeholders in South East England in 2021. Interviews were supplemented with literature. Results: England's local healthcare commissioning has made the transition towards a new organisational architecture, with some integrated care programmes running, and a dual top-down and bottom-up prioritisation process in place. The commissioning and consequent development of integrated care programmes have been hindered by various barriers, including difficulties in accessing and using information, operational challenges, and resource constraints. Investment decisions have mainly been driven by national directives and budget considerations, with a mixture of subjective and objective approaches. A systematic and data-driven framework could replace this ad-hoc prioritisation of integrated care and contribute to a more rational and transparent commissioning process. Conclusion: The emerging ICSs seem to open an opportunity for local commissioners to strengthen the commissioning process of integrated care with evidence-based priority-setting approaches similar to the well-established health technology assessment framework at the national level.

Refinement of the Well-being in Pregnancy (WiP) questionnaire: cognitive interviews with women and healthcare professionals and a validation survey.

BACKGROUND: Measuring positive and negative aspects of well-being during pregnancy and childbirth is important for both healthy women and women who are living with long-term health conditions (LTCs). This study aimed to further refine the Well-being in Pregnancy (WiP) questionnaire and to incorporate LTC specific items where appropriate. METHODS: A multi-method study. Cognitive interviews with pregnant or postpartum women (n = 11) and consultations with healthcare professionals (n = 11) and public representatives (n = 4) were conducted to explore the acceptability of existing WiP items and content. Items were refined and subsequently administered on an online survey (n = 768). Item reduction steps and exploratory factor analysis were performed on survey data. Convergent validity was examined using Pearson correlation coefficients to compare relationships with other included validated assessments. RESULTS: Following amendments to three items, the addition of eight core WiP items and five LTC specific items, a total of 25 items were considered relevant and appropriate for use with pregnant women. Analysis of survey data reduced the questionnaire to 12 items measuring three core WiP scales; 1) Concerns over support after birth, 2) Positive pregnancy and, 3) Confidence about motherhood, and a five item standalone LTC specific scale. All scales demonstrated good validity and internal reliability. Scores for the three core scales moderately correlated with established well-being measures indicating that they were measuring similar, yet distinct concepts. CONCLUSIONS: Analyses confirmed good psychometric properties of the refined WiP questionnaire. The use of pregnancy specific well-being measures, such as the WiP, provide a route into asking women in more detail about how their care may be tailored to support them and also facilitates positive conversations with women about how care and experience of pregnancy and childbirth may be enhanced further.

A core outcome set for randomised controlled trials of physical activity interventions: development and challenges.

BACKGROUND: Core outcome sets are standardised sets of outcomes that should be collected and reported for all clinical trials. They have been widely developed and are increasingly influential in clinical research, but despite this, their use in public health has been limited to date. The aim of this study was to develop a core outcome set for public health trials evaluating interventions to promote physical activity in the general adult population. METHODS: The core outcome set was developed using a three-stage approach: stage one: a review of literature to identify potential domains for inclusion in the core outcome set; stage two: a Delphi survey was carried out to reach consensus about which outcome domains to include in the core outcome set; and stage three: a second Delphi survey was conducted to determine how best to measure the outcome domains included in the core outcome set. RESULTS: A classification of 13 outcome domains of physical activity was developed (stage one). Twenty people completed round one of the first Delphi survey (stage two), reaching a consensus to include two domains in the core outcome set, 'device-based level of physical activity' (80.0%, n = 16) and 'health-related quality of life' (70.0%, n = 14). No further consensus on the remaining outcome domains was reached in round two. Nineteen people completed the second Delphi survey (stage three). Participants rated the accelerometer (mean rating = 3.89, on a scale of 1 (do not recommend) to 5 (highly recommend)) as the best device to measure level of physical activity, and the EQ-5D (73.7%, n = 14) as the most appropriate measure of health-related quality of life. CONCLUSIONS: This study has made progress towards the development of a core outcome set for use in physical activity trials, however, there was limited consensus about which domains to include. The development of the core outcome set was challenged by the need for trial-specific outcomes, and the complexities of collecting, processing and reporting device-based data.

Ten outcome measures in forensic mental health: A survey of clinician views on comprehensiveness, ease of use and relevance.

BACKGROUND: Measurement of outcomes in forensic mental health services is essential to ensure that these services are delivering good quality care and treatment. Instruments for outcome measurement should cover all important domains, be easy to implement in a routine clinical context and facilitate transfer of relevant information between clinicians as the patient progresses along a recovery and rehabilitation pathway. AIMS: We sought the views of clinicians on 10 common instruments used as outcome measures in forensic mental health services, especially on their perceived comprehensiveness and ease of use. METHODS: An online survey was used to gather the views of clinicians from a range of professional backgrounds working in forensic mental health services in the United Kingdom. The selected instruments were identified from a previous systematic review of instruments for measuring outcomes in this context. Questions covered comprehensiveness, ease of use, patient involvement, relevance and use for progressing tracking and care planning. RESULTS: Complete responses were received from 229 individuals. The range of respondents either agreeing or strongly agreeing that individual instruments were comprehensive was 6-39%; easy to use 19%-69%; relevant 31%-78%; useful to measure progress 7-70%; and useful for care planning 33-81%. Respondents reported that, for each of the 10 instruments, full involvement of patients varied between 3% and 22%; partial involvement 12-45%, patients informed, but not involved 11%-28%; and patients not involved or informed 21%-64%. CONCLUSIONS: The Health of the Nation Outcome Scale Secure, the only instrument designed as an outcome measure, is not regarded by clinicians as useful in that respect and the majority of clinicians do not inform patients they are using it. Clinicians appear most familiar with the Historical Clinical Risk 20 (HCR-20), which some respondents considered potentially useful as a progress measure but with limited patient involvement. Most respondents did not think that the HCR-20 is comprehensive. There is a need for outcome measures that are comprehensive, easy to use and have adequate patient involvement in their development and rating.

Comparison of a theoretically driven cognitive therapy (the Feeling Safe Programme) with befriending for the treatment of persistent persecutory delusions: a parallel, single-blind, randomised controlled trial.

BACKGROUND: There is a large clinical need for improved treatments for patients with persecutory delusions. We aimed to test whether a new theoretically driven cognitive therapy (the Feeling Safe Programme) would lead to large reductions in persecutory delusions, above non-specific effects of therapy. We also aimed to test treatment effect mechanisms. METHODS: We did a parallel, single-blind, randomised controlled trial to test the Feeling Safe Programme against befriending with the same therapists for patients with persistent persecutory delusions in the context of non-affective psychosis diagnoses. Usual care continued throughout the duration of the trial. The trial took place in community mental health services in three UK National Health Service trusts. Participants were included if they were 16 years or older, had persecutory delusions (as defined by Freeman and Garety) for at least 3 months and held with at least 60% conviction, and had a primary diagnosis of non-affective psychosis from the referring clinical team. Patients were randomly assigned to either the Feeling Safe Programme or the befriending programme, using a permuted blocks algorithm with randomly varying block size, stratified by therapist. Trial assessors were masked to group allocation. If an allocation was unmasked then the unmasked assessor was replaced with a new masked assessor. Outcomes were assessed at 0 months, 6 months (primary endpoint), and 12 months. The primary outcome was persecutory delusion conviction, assessed within the Psychotic Symptoms Rating Scale (PSYRATS; rated 0-100%). Outcome analyses were done in the intention-to-treat population. Each intervention was provided individually over 6 months. This trial is registered with the ISRCTN registry, ISRCTN18705064. FINDINGS: From Feb 8, 2016, to July 26, 2019, 130 patients with persecutory delusions (78 [60%] men; 52 [40%] women, mean age 42 years [SD 12·1, range 17-71]; 86% White, 9% Black, 2% Indian; 2·3% Pakistani; 2% other) were recruited. 64 patients were randomly allocated to the Feeling Safe Programme and 66 patients to befriending. Compared with befriending, the Feeling Safe Programme led to significant end of treatment reductions in delusional conviction (-10·69 [95% CI -19·75 to -1·63], p=0·021, Cohen's d=-0·86) and delusion severity (PSYRATS, -2·94 [-4·58 to -1·31], p<0·0001, Cohen's d=-1·20). More adverse events occurred in the befriending group (68 unrelated adverse events reported in 20 [30%] participants) compared with the Feeling Safe group (53 unrelated adverse events reported in 16 [25%] participants). INTERPRETATION: The Feeling Safe Programme led to a significant reduction in persistent persecutory delusions compared with befriending. To our knowledge, these are the largest treatment effects seen for patients with persistent delusions. The principal limitation of our trial was the relatively small sample size when comparing two active treatments, meaning less precision in effect size estimates and lower power to detect moderate treatment differences in secondary outcomes. Further research could be done to determine whether greater effects could be possible by reducing the hypothesised delusion maintenance mechanisms further. The Feeling Safe Programme could become the recommended psychological treatment in clinical services for persecutory delusions. FUNDING: NIHR Research Professorship and NIHR Oxford Health Biomedical Research Centre.

Exploring the use of health and wellbeing measures during pregnancy and the first year following birth in women living with pre-existing long-term conditions: qualitative interviews with women and healthcare professionals.

BACKGROUND: One way in which care for pregnant and postpartum women living with long-term health conditions (LTCs) may be improved is through the adoption of standardised measures to provide evidence of health outcomes and wellbeing from the woman's perspective. AIM: The study explores the views of pregnant and postpartum women living with LTCs, and healthcare professionals to better understand the potential value of using standardised health and wellbeing measures within this patient population. METHODS: Qualitative semi-structured telephone interviews were conducted to explore the perceived value of using measures with pregnant and postpartum women living with LTCs within maternity services. Participants were asked to provide feedback on three exemplar measures: the Long Term Conditions Questionnaire, the Wellbeing in Pregnancy Questionnaire and the EuroQol EQ-5D-5L instrument. Thematic analysis was used in the analysis of the transcripts. RESULTS: Eleven women and 11 healthcare professionals took part in semi-structured interviews. Analysis identified five themes as relevant to the use of measures within maternity services: 1) Improving care, 2) Assessing outcomes, 3) Interpretation and application of data, 4) Engagement challenges and implementation and, 5) Women and healthcare professionals alignment. CONCLUSIONS: Despite varying prior experience and expressing some questions about implementation, respondents were cautiously positive about the use of standardised health and wellbeing measures. Their use offers the opportunity for both affected women and healthcare professionals caring for them to collectively identify and assess important areas of unmet needs and improve outcomes. Incorporating the perspectives of women with LTC's will help bring awareness to elements of women centred care which health services may seek to address.

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.

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.

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.