The financial impact on people with coeliac disease of withdrawing gluten-free food from prescriptions in England: findings from a cross-sectional survey

Background A lifelong gluten-free diet is the only treatment for coeliac disease. The cost and availability of gluten-free substitute food (GFSF) remain challenging. Some local areas in England have stopped gluten-free prescriptions for coeliac disease. The aim of this paper is to present the quantitative findings of the financial impact of prescription withdrawal on people with coeliac disease. Methods A cross-sectional survey with adults in England who reported having been diagnosed with coeliac disease by a health professional. The postal survey was distributed by Coeliac UK to their members in 13 prescribing and 13 non-prescribing local areas that were matched for geographical location and level of deprivation. Additionally, an advertisement for the survey was placed on social media. The questionnaire contained items on the availability and use of prescriptions; the weekly amount spent on GFSF; amount of specific GFSF bought; affordability of GFSF; demographics and health-related variables. Data were analysed by descriptive statistics, analysis of variance and regression analysis. Results Of the 1697 participants, 809 resided in areas that provided prescriptions and 888 in non-prescribing areas. Participants self-report of their prescription did not always match the local area prescription policy. There was no statistically significant difference between prescribing and non-prescribing areas in how easy or difficult participants found it to obtain GFSF (p = 0.644) and its availability in various locations. Participants in non-prescribing areas purchased most types of GFSF items in statistically significantly higher quantities and thereby spent an additional £11.32/month on GFSF items than participants in prescribing areas (p  Conclusions The study has highlighted that gluten-free prescription withdrawal can have financial implications for people with coeliac disease. Any future changes to the prescription policy of GFSF should consider the impact on the population, especially lower income households

Floundering or Flourishing? Early Insights from the Inception of Integrated Care Systems in England

Background: In 2022, England embarked on an ambitious and innovative re-organisation to produce an integrated health and care system with a greater focus on improving population health. This study aimed to understand how nascent ICSs are developing and to identify the key challenges and enablers to integration. Methods: Four ICSs participated in the study between November 2021 and May 2022. Semi-structured interviews with system leaders (n = 67) from health, social and voluntary care as well as representatives of local communities were held. A thematic framework approach supported by Leutz’s five laws of integration framework was used to analyse the data. Results: The benefits of ICSs include enhancing the delivery of good quality care, improving population health and providing more person-centred care in the community. However, differences between health and social care such as accountability, organisational/professional cultures, risks of duplicating efforts, tensions over funding allocation, issues of data integration and struggles in engaging local communities threaten to hamper integration. Conclusions: Despite ICS’s investing in the structural and relational components of integrated care, the unprecedented pressures on systems to reduce demand on primary and emergency care tackling elective backlogs may detract from a key goal of ICSs, improving population health and prevention

Exercise for people with a fragility fracture of the pelvis or lower limb: A systematic review of interventions evaluated in clinical trials and reporting quality

Background. To aid design of exercise trials for people with pelvic and lower limb fragility fractures a systematic review was conducted to identify what types of exercise and mobility outcomes have been assessed, investigate intervention reporting quality, and evaluate risk of bias in published trials. Methods. Systematic searches of electronic databases (CENTRAL, MEDLINE, EMBASE, PEDro) 1996-2019 were conducted to identify randomised controlled trials of exercise for pelvic or lower limb fragility fractures. Two reviewers independently screened titles and abstracts. One reviewer extracted data, a second verified. Two reviewers independently assessed risk of bias. Intervention reporting quality was based on TIDieR, assessed by one reviewer and verified by a second. Narrative synthesis was undertaken. Registration. PROSPERO CRD42017060905. Results. Searches identified 37 trials including 3564 participants, median sample size 81(IQR 48-124), participants aged 81 years (IQR 79-82) and 76%(2536/3356) female. All trials focussed on people with hip fracture except one on ankle fracture. Exercise types focussed on resistance exercise in 14 trials, weight bearing exercise in 5 trials, 13 varied dose of sessions with health professionals, and 2 trials each focussed on treadmill gait training, timing of weight bearing or aerobic exercise. 30/37(81%) of trials reported adequate sequence generation, 25/37(68%) sufficient allocation concealment. 10/37(27%) trials lacked outcome assessor blinding. Of 65 exercise interventions, reporting was clear for 33(51%) in terms of when started, 61(94%) for where delivered, 49(75%) for who delivered, 47(72%) for group or individual, 29(45%) for duration, 46(71%) for session frequency, 8(12%) for full prescription details to enable the exercises to be reproduced, 32(49%) clearly reported tailoring or modification, and 23(35%) reported exercise adherence. Subjectively assessed mobility was assessed in 22/37(59%) studies and 29/37(78%) used an objective measure. Conclusions. All trials focussed on hip fracture, apart from one ankle fracture trial. Research into pelvic and other lower limb fragility fractures is indicated. A range of exercise types were investigated but to date deficiencies in intervention reporting hamper reproducibility. Adoption of TIDieR and CERT guidelines should improve intervention reporting as use increases. Trials would be improved by consistent blinded outcome assessor use and with consensus on which mobility outcomes should be assessed

Patient-Reported Measures for Person-Centered Coordinated Care: A Comparative Domain Map and Web-Based Compendium for Supporting Policy Development and Implementation

BACKGROUND: Patient-reported measure (PRM) questionnaires were originally used in research to measure outcomes of intervention studies. They have now evolved into a diverse family of tools measuring a range of constructs including quality of life and experiences of care. Current health and social care policy increasingly advocates their use for embedding the patient voice into service redesign through new models of care such as person-centered coordinated care (P3C). If chosen carefully and used efficiently, these tools can help improve care delivery through a variety of novel ways, including system-level feedback for health care management and commissioning. Support and guidance on how to use these tools would be critical to achieve these goals. OBJECTIVE: The objective of this study was to develop evidence-based guidance and support for the use of P3C-PRMs in health and social care policy through identification of PRMs that can be used to enhance the development of P3C, mapping P3C-PRMs against an existing model of domains of P3C, and integration and organization of the information in a user-friendly Web-based database. METHODS: A pragmatic approach was used for the systematic identification of candidate P3C-PRMs, which aimed at balancing comprehensiveness and feasibility. This utilized a number of resources, including existing compendiums, peer-reviewed and gray literature (using a flexible search strategy), and stakeholder engagement (which included guidance for relevant clinical areas). A subset of those candidate measures (meeting prespecified eligibility criteria) was then mapped against a theoretical model of P3C, facilitating classification of the construct being measured and the subsequent generation of shortlists for generic P3C measures, specific aspects of P3C (eg, communication or decision making), and condition-specific measures (eg, diabetes, cancer) in priority areas, as highlighted by stakeholders. RESULTS: In total, 328 P3C-PRMs were identified, which were used to populate a freely available Web-based database. Of these, 63 P3C-PRMs met the eligibility criteria for shortlisting and were classified according to their measurement constructs and mapped against the theoretical P3C model. We identified tools with the best coverage of P3C, thereby providing evidence of their content validity as outcome measures for new models of care. Transitions and medications were 2 areas currently poorly covered by existing measures. All the information is currently available at a user-friendly web-based portal (p3c.org.uk), which includes all relevant information on each measure, such as the constructs targeted and links to relevant literature, in addition to shortlists according to relevant constructs. CONCLUSIONS: A detailed compendium of P3C-PRMs has been developed using a pragmatic systematic approach supported by stakeholder engagement. Our user-friendly suite of tools is designed to act as a portal to the world of PRMs for P3C, and have utility for a broad audience, including (but not limited to) health care commissioners, managers, and researchers.BACKGROUND: Patient-reported measure (PRM) questionnaires were originally used in research to measure outcomes of intervention studies. They have now evolved into a diverse family of tools measuring a range of constructs including quality of life and experiences of care. Current health and social care policy increasingly advocates their use for embedding the patient voice into service redesign through new models of care such as person-centered coordinated care (P3C). If chosen carefully and used efficiently, these tools can help improve care delivery through a variety of novel ways, including system-level feedback for health care management and commissioning. Support and guidance on how to use these tools would be critical to achieve these goals. OBJECTIVE: The objective of this study was to develop evidence-based guidance and support for the use of P3C-PRMs in health and social care policy through identification of PRMs that can be used to enhance the development of P3C, mapping P3C-PRMs against an existing model of domains of P3C, and integration and organization of the information in a user-friendly Web-based database. METHODS: A pragmatic approach was used for the systematic identification of candidate P3C-PRMs, which aimed at balancing comprehensiveness and feasibility. This utilized a number of resources, including existing compendiums, peer-reviewed and gray literature (using a flexible search strategy), and stakeholder engagement (which included guidance for relevant clinical areas). A subset of those candidate measures (meeting prespecified eligibility criteria) was then mapped against a theoretical model of P3C, facilitating classification of the construct being measured and the subsequent generation of shortlists for generic P3C measures, specific aspects of P3C (eg, communication or decision making), and condition-specific measures (eg, diabetes, cancer) in priority areas, as highlighted by stakeholders. RESULTS: In total, 328 P3C-PRMs were identified, which were used to populate a freely available Web-based database. Of these, 63 P3C-PRMs met the eligibility criteria for shortlisting and were classified according to their measurement constructs and mapped against the theoretical P3C model. We identified tools with the best coverage of P3C, thereby providing evidence of their content validity as outcome measures for new models of care. Transitions and medications were 2 areas currently poorly covered by existing measures. All the information is currently available at a user-friendly web-based portal (p3c.org.uk), which includes all relevant information on each measure, such as the constructs targeted and links to relevant literature, in addition to shortlists according to relevant constructs. CONCLUSIONS: A detailed compendium of P3C-PRMs has been developed using a pragmatic systematic approach supported by stakeholder engagement. Our user-friendly suite of tools is designed to act as a portal to the world of PRMs for P3C, and have utility for a broad audience, including (but not limited to) health care commissioners, managers, and researchers

The financial impact on people with coeliac disease of withdrawing gluten-free food from prescriptions in England: findings from a cross-sectional survey

Abstract Background A lifelong gluten-free diet is the only treatment for coeliac disease. The cost and availability of gluten-free substitute food (GFSF) remain challenging. Some local areas in England have stopped gluten-free prescriptions for coeliac disease. The aim of this paper is to present the quantitative findings of the financial impact of prescription withdrawal on people with coeliac disease. Methods A cross-sectional survey with adults in England who reported having been diagnosed with coeliac disease by a health professional. The postal survey was distributed by Coeliac UK to their members in 13 prescribing and 13 non-prescribing local areas that were matched for geographical location and level of deprivation. Additionally, an advertisement for the survey was placed on social media. The questionnaire contained items on the availability and use of prescriptions; the weekly amount spent on GFSF; amount of specific GFSF bought; affordability of GFSF; demographics and health-related variables. Data were analysed by descriptive statistics, analysis of variance and regression analysis. Results Of the 1697 participants, 809 resided in areas that provided prescriptions and 888 in non-prescribing areas. Participants self-report of their prescription did not always match the local area prescription policy. There was no statistically significant difference between prescribing and non-prescribing areas in how easy or difficult participants found it to obtain GFSF (p = 0.644) and its availability in various locations. Participants in non-prescribing areas purchased most types of GFSF items in statistically significantly higher quantities and thereby spent an additional £11.32/month on GFSF items than participants in prescribing areas (p < 0.001). While taking into account the self-reported prescription status, the amount increased to £14.09/month (p < 0.001). Although affordability to buy GFSF did not differ based on local area prescription policy or self-reported prescription status, it was dependent on equivalised annual income. However, affordability did not influence spending on GFSF. Regression analysis indicated that males and households with additional members with coeliac disease spent more on GFSF. Conclusions The study has highlighted that gluten-free prescription withdrawal can have financial implications for people with coeliac disease. Any future changes to the prescription policy of GFSF should consider the impact on the population, especially lower income households

The Development of a Core Outcome Set for Trials and Evaluative Studies in Adult Social Care

Context: Core outcome sets that help to harmonise results across studies have had a major impact on clinical research and policymaking. However, it is less developed in social care research. Objectives: We aimed to explore feasibility and identify a set of domains that would comprise a core outcome set for adult social care research and specific measures to assess these domains. Methods: We identified core domains through a scoping review. A panel was recruited to participate in two surveys. In the first survey, participants scrutinised the approach and the proposed domains; based on which, domains were refined. Outcome measures were then identified for each domain. In the second survey, the panel provided their views on domains and measures. Findings: Of 30 individuals approached, 25 participated in the first survey and 19 in the second. The first survey revealed that the majority (20/25) were supportive of the overall approach. Of seven domains proposed initially, six (well-being, health-related quality of life, functional ability, experience with ser-vices, service use and costs, and carers&#x2019; perspectives) were retained and one (psychological well-being) was merged with the well-being domain. Based on available evidence, we recommended specific measures for four domains and highlighted potentially relevant resources for the other two domains. In the second survey, majority of the panel (i.e. over 70%) agreed with the domains and recommendations on measures. Implications: This study has shown that it is feasible to progress the idea of a core outcome set that might inform and guide future social care research

The effects and experiences of goal setting in stroke rehabilitation - a systematic review

Objective: To systematically integrate and appraise the evidence for effects and experiences of goal setting in stroke rehabilitation. Design: Systematic review of quantitative and qualitative studies. Methods: Relevant databases were searched from start of database to 30 April 2011. Studies of any design employing goal setting, reporting stroke-specific data and evaluating its effects and/ or experiences were included. Results: From a total of 53998 hits, 112 full texts were analysed and 17 studies were included, of which seven evaluated effects while ten explored experiences of goal setting. No eligible randomized controlled trials were identified. Most of the included studies had weak to moderate methodological strengths. The design, methods of goal setting and outcome measures differed, making pooling of results difficult. Goal setting appeared to improve recovery, performance and goal achievement, and positively influenced patients' perceptions of self-care ability and engagement in rehabilitation. However, the actual extent of patient involvement in the goal setting process was not made clear. Patients were often unclear about their role in this process. Professionals reported higher levels of collaboration during goal setting than patients. Patients and professionals differed on how they set goals, types of goals set, and on how they perceived goal attainment. Barriers to goal setting outnumbered the facilitators. Conclusion: Due to the heterogeneity and quality of included studies, no firm conclusions could be made on the effectiveness, feasibility and acceptability of goal setting in stroke rehabilitation. Further rigorous research is required to strengthen the evidence base. Better collaboration and communication between patients and professionals and relevant education are recommended for best practice. Implications for Rehabilitation- Communication is key to collaborative goal setting. - Education and training of professionals regarding goal setting is recommended, especially in relation to methods of involving people with communication and cognitive impairments. - Educating patients about stroke and goal setting could enhance their participation in goalsch_phy35pub3119pub

The evidence for cognitive behavioural therapy in any condition, population or context: a meta-review of systematic reviews and panoramic meta-analysis

The majority of psychological treatment research is dedicated to investigating the effectiveness of cognitive behavioural therapy (CBT) across different conditions, population and contexts. We aimed to summarise the current systematic review evidence and evaluate the consistency of CBT's effect across different conditions. We included reviews of CBT randomised controlled trials in any: population, condition, format, context, with any type of comparator and published in English. We searched DARE, Cochrane, MEDLINE, EMBASE, PsycINFO, CINAHL, CDAS, and OpenGrey between 1992 and January 2019. Reviews were quality assessed, their data extracted and summarised. The effects upon health-related quality of life (HRQoL) were pooled, within-condition groups. If the across-condition heterogeneity was I2 < 75%, we pooled effects using a random-effect panoramic meta-analysis. We summarised 494 reviews (221 128 participants), representing 14/20 physical and 13/20 mental conditions (World Health Organisation's International Classification of Diseases). Most reviews were lower-quality (351/494), investigated face-to-face CBT (397/494), and in adults (378/494). Few reviews included trials conducted in Asia, South America or Africa (45/494). CBT produced a modest benefit across-conditions on HRQoL (standardised mean difference 0.23; 95% confidence intervals 0.14-0.33, I2 = 32%). The effect's associated prediction interval -0.05 to 0.50 suggested CBT will remain effective in conditions for which we do not currently have available evidence. While there remain some gaps in the completeness of the evidence base, we need to recognise the consistent evidence for the general benefit which CBT offers