Non-specialist Healthcare Professionals Research Articles

Utility of Large Language Models for Health Care Professionals and Patients in Navigating Hematopoietic Stem Cell Transplantation: Comparison of the Performance of ChatGPT-3.5, ChatGPT-4, and Bard.

Artificial intelligence is increasingly being applied to many workflows. Large language models (LLMs) are publicly accessible platforms trained to understand, interact with, and produce human-readable text; their ability to deliver relevant and reliable information is also of particular interest for the health care providers and the patients. Hematopoietic stem cell transplantation (HSCT) is a complex medical field requiring extensive knowledge, background, and training to practice successfully and can be challenging for the nonspecialist audience to comprehend. We aimed to test the applicability of 3 prominent LLMs, namely ChatGPT-3.5 (OpenAI), ChatGPT-4 (OpenAI), and Bard (Google AI), in guiding nonspecialist health care professionals and advising patients seeking information regarding HSCT. We submitted 72 open-ended HSCT-related questions of variable difficulty to the LLMs and rated their responses based on consistency-defined as replicability of the response-response veracity, language comprehensibility, specificity to the topic, and the presence of hallucinations. We then rechallenged the 2 best performing chatbots by resubmitting the most difficult questions and prompting to respond as if communicating with either a health care professional or a patient and to provide verifiable sources of information. Responses were then rerated with the additional criterion of language appropriateness, defined as language adaptation for the intended audience. ChatGPT-4 outperformed both ChatGPT-3.5 and Bard in terms of response consistency (66/72, 92%; 54/72, 75%; and 63/69, 91%, respectively; P=.007), response veracity (58/66, 88%; 40/54, 74%; and 16/63, 25%, respectively; P<.001), and specificity to the topic (60/66, 91%; 43/54, 80%; and 27/63, 43%, respectively; P<.001). Both ChatGPT-4 and ChatGPT-3.5 outperformed Bard in terms of language comprehensibility (64/66, 97%; 53/54, 98%; and 52/63, 83%, respectively; P=.002). All displayed episodes of hallucinations. ChatGPT-3.5 and ChatGPT-4 were then rechallenged with a prompt to adapt their language to the audience and to provide source of information, and responses were rated. ChatGPT-3.5 showed better ability to adapt its language to nonmedical audience than ChatGPT-4 (17/21, 81% and 10/22, 46%, respectively; P=.03); however, both failed to consistently provide correct and up-to-date information resources, reporting either out-of-date materials, incorrect URLs, or unfocused references, making their output not verifiable by the reader. In conclusion, despite LLMs' potential capability in confronting challenging medical topics such as HSCT, the presence of mistakes and lack of clear references make them not yet appropriate for routine, unsupervised clinical use, or patient counseling. Implementation of LLMs' ability to access and to reference current and updated websites and research papers, as well as development of LLMs trained in specialized domain knowledge data sets, may offer potential solutions for their future clinical application.

Early Intervention in Psychosis and Management of First Episode Psychosis in Low- and Lower-Middle-Income Countries: A Systematic Review.

People with first-episode psychosis (FEP) in low- and lower-middle-income countries (LMIC) experience delays in receiving treatment, resulting in poorer outcomes and higher mortality. There is robust evidence for effective and cost-effective early intervention in psychosis (EIP) services for FEP, but the evidence for EIP in LMIC has not been reviewed. We aim to review the evidence on early intervention for the management of FEP in LMIC. We searched 4 electronic databases (Medline, Embase, PsycINFO, and CINAHL) to identify studies describing EIP services and interventions to treat FEP in LMIC published from 1980 onward. The bibliography of relevant articles was hand-searched. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed. The search strategy produced 5074 records; we included 18 studies with 2294 participants from 6 LMIC countries. Thirteen studies (1553 participants) described different approaches for EIP. Pharmacological intervention studies (n = 4; 433 participants) found a high prevalence of metabolic syndrome among FEP receiving antipsychotics (P ≤ .005). One study found a better quality of life in patients using injectables compared to oral antipsychotics (P = .023). Among the non-pharmacological interventions (n = 3; 308 participants), SMS reminders improved treatment engagement (OR = 1.80, CI = 1.02-3.19). The methodological quality of studies evidence was relatively low. The limited evidence showed that EIP can be provided in LMIC with adaptations for cultural factors and limited resources. Adaptations included collaboration with traditional healers, involving nonspecialist healthcare professionals, using mobile technology, considering the optimum use of long-acting antipsychotics, and monitoring antipsychotic side effects.

Evaluation of a person-centred, nurse-led model of care delivering hepatitis C testing and treatment in priority settings: a mixed-methods evaluation of the Tasmanian Eliminate Hepatitis C Australia Outreach Project, 2020–2022

IntroductionAustralia has experienced sustained reductions in hepatitis C testing and treatment and may miss its 2030 elimination targets. Addressing gaps in community-based hepatitis C prescribing in priority settings that did not have, or did not prioritise, hepatitis C testing and treatment care pathways is critical.MethodsThe Tasmanian Eliminate Hepatitis C Australia Outreach Project delivered a nurse-led outreach model of care servicing hepatitis C priority populations in the community through the Tasmanian Statewide Sexual Health Service, supported by the Eliminating Hepatitis C Australia partnership. Settings included alcohol and other drug services, needle and syringe programs and mental health services. The project provided clients with clinical care across the hepatitis C cascade of care, including testing, treatment, and post-treatment support and hepatitis C education for staff.ResultsBetween July 2020 and July 2022, a total of 43 sites were visited by one Clinical Nurse Consultant. There was a total of 695 interactions with clients across 219 days of service delivery by the Clinical Nurse Consultant. A total of 383 clients were tested for hepatitis C (antibody, RNA, or both). A total of 75 clients were diagnosed with hepatitis C RNA, of which 95% (71/75) commenced treatment, 83% (62/75) completed treatment and 52% (39/75) received a negative hepatitis C RNA test at least 12 weeks after treatment completion.ConclusionsProviding outreach hepatitis C services in community-based services was effective in engaging people living with and at-risk of hepatitis C, in education, testing, and care. Nurse-led, person-centred care was critical to the success of the project. Our evaluation underscores the importance of employing a partnership approach when delivering hepatitis C models of care in community settings, and incorporating workforce education and capacity-building activities when working with non-specialist healthcare professionals.

A71Evaluation of a co-produced Simulation Based Perinatal Mental Health Programme

NHS England’s Long-Term Plan for Mental Health highlights need to develop PNMH services and train staff ensuring service user involvement [1]. Women experiencing PNMH disorders often initially present to non-specialist healthcare professionals (NSHCP), meaning that they need specific training in assessment and management of PNMH disorders. A co-produced and co-facilitated simulation-based training programme in perinatal mental health was developed in 2019 by Sussex Partnership Specialist Perinatal Service in conjunction with University Hospital’s Sussex Simulation team. Primary Aim: Evaluate self-reported changes in confidence and competence of learners attending perinatal mental-health (PNMH) simulation training across multiple domains relating to assessment and management of PNMH problems. Secondary Aims: Evaluate impact of service user co-facilitation on PNMH simulation training; Assess whether participant demographics reflect training’s target professional groups. Service User Consultants (SUCs) were employed as faculty members and trained in simulation facilitation alongside professional faculty. Scenarios were developed in a multidisciplinary workshop, and aligned to the Health Education England (HEE) Competency framework in PNMH. Courses were co-facilitated by a Perinatal Psychiatrist and SUC. Data on participants’ confidence and knowledge across the competency framework domains was collated using a survey monkey questionnaire, pre and post-course. 242 responses were collected from participants from more than ten different staff groups e.g. junior doctors, (18%), health visitors (17%) &amp; midwives (26%). Participant confidence improved significantly across all training domains. 93.5% of participants graded contribution of SUCs either useful or very-useful. 99.2% found the simulation training useful or very-useful, with all participants agreeing their future practice would consequently change. The simulation-based training programme increased confidence and understanding of NSHCPs from across the PNMH care pathway, on a number of domains set by HEE PNMH competency framework. Participants were overwhelmingly in support of SUC involvement in the provision of valuable training which resembled real-life clinical encounters via scenarios.

Limb Salvage and Survival in Chronic Limb-Threatening Ischemia: The Need for a Fast-Track Team-Based Approach.

Chronic limb-threatening ischemia (CLTI) represents the end-stage form of peripheral arterial disease (PAD) and is associated with a very poor prognosis and high risk of limb loss and mortality. It can be considered very similar to a terminal cancer disease, reflecting a large impact on quality of life and healthcare costs. The aim of this study is to offer an overview of the relationship between CLTI, limb salvage, and mortality, with a focus on the need of a fast-track team-based management that is a driver to achieve better survival results. This review can be useful to improve management of this growing impact disease, and to promote the standardisation of care and communication between specialist and non-specialist healthcare professionals.

Evaluation of a Depression Intervention in People With HIV and/or TB in Eswatini Primary Care Facilities: Implications for Southern Africa.

Depression associated with chronic illnesses is common in Southern Africa, yet there are major treatment gaps. This study assesses the feasibility and acceptability of the Healthy Activity Program intervention for depression among people with HIV and/or TB. The intervention involves training nonspecialist nurses in depression, including identification, counseling based on behavioral activation theory, and structured referral. This is a mixed methods evaluation of a pilot counseling service integrated within routine HIV and TB care from 2018 to 2019. Participants included people living with HIV and/or patients with TB in rural Eswatini. A total of 324 people living with HIV and/or TB were screened for depression, with 19% (62/324) screening positive. The median number of sessions attended was 3 (interquartile range: 1-5), with 16/60 (26%) attending the minimum 5 sessions. Qualitative results indicated acceptability, but there were concerns about feasibility. The Healthy Activity Program is a promising option to manage the treatment gap for depression in people with HIV and/or TB. However, task-shifting to nonspecialist health care professionals without increasing staff capacity is a barrier to implementation. Realistic and pragmatic assessments of capacity and workforce are essential.

Survey of healthcare professionals' experiences of care delivery in patients with chronic intestinal failure: ATLAS of Variance

Chronic intestinal failure (IF) is a rare but life-altering condition, care delivery of which is complex. The ATLAS Programme was initiated in 2016 to increase disease awareness and address inconsistencies in delivery of care across Europe. We describe the results of a non-interventional study that aimed to explore how adult patients with chronic IF are managed across Europe. This mixed-methods, non-interventional, cross-sectional study comprised a desk-based landscape assessment (Phase 1), qualitative interviews (Phase 2), and an online quantitative survey (Phase 3) completed by healthcare professionals (HCPs) involved in the management of adult patients with chronic IF during the period November 2020 to January 2021. Data were collected from 12 European countries. Survey data were anonymised and pooled for analysis at European and country level. Responses were summarised as frequencies, ranks and percentage. The quantitative survey was carried out on 119 HCPs across an estimated 58 centres. Gastroenterology was the most frequent specialty of respondents (45%). Three-quarters of HCPs (N=119) reported that their department/unit had a multidisciplinary team for the management of patients with chronic IF. HCPs reported improving quality of life (QoL) to be the most important goal of treatment (39%), followed by reducing mortality (25%), intestinal rehabilitation (20%) and reducing morbidity (9%). Similarly, 63% of HCPs responded that improved QoL was the most important treatment goal from the perspective of their patients. Overall, 87% of HCPs reported that patients with chronic IF routinely receive home parenteral nutrition (HPN) in their country, which was more common in Western versus Eastern Europe. Meeting treatment goals (53%) and achieving better levels of support with HPN (44%) were reported as the main challenges faced by HCPs in the management of patients with chronic IF. A general lack of disease awareness of chronic IF among HCPs (46%), and insufficient accredited patient referral centres (41%) were considered the most important areas for improvement. HCPs specialising in treating chronic IF considered that improvement in QoL is needed for their patients. They reported a low level of awareness of chronic IF among non-specialist HCPs.

Evidence Gaps in the Management of Patients with Sickle Cell Disease (SCD) by Non-specialist Healthcare Professionals (HCPs): Results from the Real-World Assessment Survey for SCD in Saudi (ROARS)

The Kingdom of Saudi Arabia (KSA) exhibits an extremely high prevalence of SCD and is regarded as one of the worst-affected countries in the world. Up to 2.6% of the population diagnosed with SCD in parts of KSA, and the Real-World Assessment Survey for SCD in Saudi (ROARS) was conducted to obtain insights on the disease landscape in the country. Here, we present data on the SCD management strategies employed by both specialist and non-specialist HCPs in KSA. Between September and December 2021, HCPs (>2 years SCD experience, SCD load >50 patients, >50% of practice time spent treating SCD patients) completed the survey using the structured, bilingual ROARS questionnaires (English/Arabic) through personal quantitative web-assisted telephone interviews. These HCPs were asked a series of questions covering topics such as patient caseload, patient management strategies, and perceptions of SCD treatment. A total of 64 HCPs responded to the survey, including 31 specialists (adult hematologists, n=24; pediatric hematologists, n=7) and 33 non-specialists. Non-specialist professions included general practice/family medicine/primary care (n=16), internal medicine (n=7), pediatrics (n=9), and medical oncology (n=1). On average, the monthly patient caseload was greater with specialist HCPs than non-specialist HCPs (74 vs 59 patients, respectively). Specialist HCPs were more likely to treat patients with more severe SCD genotypes: 72.3% of patients treated by specialist HCPs were diagnosed with HbSS SCD compared to 57.6% of patients treated by non-specialist HCPs. On average, targeted family screening was performed for 82.1% of patients in the hospitals where specialist HCPs work compared to 58.6% of patients in the hospitals where non-specialist HCPs work. Patients treated by specialist HCPs were also followed-up more frequently than patients treated by non-specialist HCPs (55% vs 33% followed up with their patients three/four times a year, respectively). Differences in the treatments received by patients were evident between HCPs; 72% of patients treated by specialists were receiving hydroxyurea compared to 44% of patients treated by non-specialists. However, no substantial differences in the proportion of patients treated by innovative therapies (L-glutamine, voxelotor, or crizanlizumab) were evident between specialists (7% of patients) and non-specialists (8% of patients). Screening for common SCD complications occurred more frequently in patients treated by specialists than those treated by non-specialists. This was particularly evident for avascular necrosis (45% of patients vs 21% of patients), liver sequestration (29% vs 9%), pulmonary hypertension (42% vs 24%), and nephropathy/renal insufficiency (39% vs 27%). Alloimmunization was screened for in 13% of patients treated by specialist HCPs and 3% of patients treated by non-specialist HCPs; the corresponding screening rates for vision problems/retinopathy were 13% and 12%, respectively. Overall, 65% of specialist HCPs and 36% of non-specialist HCPs reported that uncontrolled vaso-occlusive crises (VOCs) had a high impact on their patients; the impact of other SCD burdens are presented in Figure 1. Both specialist and non-specialist HCPs noted the rarity of pediatric to adult transition programs for SCD patients within hospitals; 68% of specialist HCPs and 73% of non-specialist HCPs reported no program in their treatment center. Overall, 35% of specialist HCPs reported satisfaction with current treatment options for SCD compared to 60% of non-specialist HCPs (Figure 2). Reasons for specialist HCP dissatisfaction with current SCD treatment options included the limited number of treatment options (80%), inability to reach treatment goals set for patients (55%), and inability to provide long term symptomatic relief (35%). Differences in the management of SCD patients between specialist and non-specialist HCPs in KSA were evident in this study. Specialist HCPs perform SCD and SCD complication screening more frequently than non-specialist HCPs and follow up with their patients at more frequent intervals, highlighting the need for effective education and the implementation of clinical practice guidelines to improve patient management. These data also showcase the unmet need for transition programs, and the dissatisfaction with the capability of current treatment options to improve patients' outcomes. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

Advocacy worldwide for women with bleeding disorders

Abstract Raising awareness that bleeding disorders affect women – not just men – is a key part of advocacy initiatives around the world. The European Haemophilia Consortium (EHC) and national patient organisations have run successful campaigns, with a wealth of information for women and girls with bleeding disorders and non-specialist healthcare professionals, including bleeding assessment tools, patient stories, blogs and videos. Some hold conference sessions and webinars devoted to bleeding disorders in women. By drawing on ideas and resources already available, patient organisations and other groups for women with bleeding disorders can fast-forward their advocacy plans, improve awareness and accelerate change.

Where are biomedical research plain-language summaries?

Background and AimsPlain‐language summaries (PLS) are being heralded as a tool to improve communication of scientific research to lay audiences and time‐poor or nonspecialist healthcare professionals. However, this relies on PLS being intuitively located and accessible. This research investigated the “discoverability” of PLS in biomedical journals.MethodsThe eLIFE list of journals/organizations that produce PLS was consulted on July 12, 2018, for biomedical journals (based on title). Internet research, primarily focusing on information provided by the journal websites, explored PLS terminology (what do the journals call PLS), requirements (what articles are PLS generated for, who writes/reviews them, and at what stage), and location and sharing mechanisms (where/how the PLS are made available, are they free to access, and are they visible on PubMed).ResultsThe methodology identified 10 journals from distinct publishers, plus eLIFE itself (N = 11). Impact factors ranged from 3.768 to 17.581. Nine different terms were used to describe PLS. Most of the journals (8/11) required PLS for at least all research articles. Authors were responsible for writing PLS in 9/11 cases. Seven journals required PLS on article submission; of the other four, one required PLS at revision and three on acceptance. The location/sharing mechanism for PLS varied: within articles, alongside articles (separate tab/link), and/or on separate platforms (eg, social media, dedicated website). PLS were freely available when they were published with articles; however, PLS were only included within conventional abstracts on PubMed for 2/11 journals.ConclusionAcross the few biomedical journals producing PLS, our research suggests there is wide variation in terminology, location, sharing mechanisms, and PubMed visibility. We advocate a more consistent approach to ensure that PLS have appropriate prominence and can be easily found by their intended audiences.

From the Editor's Desk…

From the Editor's Desk…

Recommendations for designing genetic test reports to be understood by patients and non-specialists

Patients and non-specialist healthcare professionals are increasingly expected to understand and interpret the results of genetic or genomic testing. These results are currently reported using a variety of templates, containing different amounts, levels, and layouts of information. We set out to establish a set of recommendations for communicating genetic test results to non-expert readers. We employed a qualitative-descriptive study design with user-centred design principles, including a mixture of in-person semi-structured interviews and online questionnaires with patients, healthcare professionals and the general public. The resulting recommendations and example template include providing at-a-glance comprehension of what the test results mean for the patient; suggested next steps; and details of further information and support. Separation and inclusion of technical methodological details enhances non-specialists’ understanding, while retaining important information for specialists and the patients’ records. The recommendations address the high-level needs of patients and their non-specialist clinicians when receiving genetic test results. These recommendations provide a solid foundation for the major content and structure of reports, and we recommend further engagement with patients and clinicians to tailor reports to specific types of test and results.

Knowledge of peripheral artery disease: What do the public, healthcare practitioners, and trainees know?

This systematic review evaluated the knowledge and awareness of peripheral artery disease (PAD) within the general public (including patients with peripheral vascular disease), nonspecialist healthcare professionals (nsHCP), and trainees (medical students and trainee doctors). Relevant articles were identified from electronic databases using key search terms: 'peripheral artery disease'; 'limb ischaemia'; 'intermittent claudication'; 'knowledge'; 'understanding'; 'public'; 'medical professional'. The heterogeneous results were described narratively. A lack of knowledge and understanding of PAD (disease awareness) were identified in all groups. Among nsHCPs, factors which affect knowledge include the level of training, early clinical exposure and the presence of family members with cardiovascular/vascular disease. Within the general public, knowledge and awareness was improved if a family member/friend had a diagnosis, or following a patient-centred consultation with any HCP. Public campaigns are proven effective in improving disease knowledge/awareness in conditions such as stroke alongside sustained patient education. These may provide future avenues to improve PAD knowledge and awareness, in order to effectively manage risk factors and minimise delayed or missed diagnosis of PAD. (PROSPERO registration number: CRD42018117304).

Evaluation of safety for flibanserin

ABSTRACT Introduction: Hypoactive sexual desire disorder (HSDD) is the most prevalent sexual dysfunction in women, previously managed with off-label therapies. Indicated for premenopausal women, flibanserin is the first FDA-approved medication to treat HSDD. Areas covered: This review summarizes flibanserin’s pharmacokinetics, proposed mechanism of action, and safety data in clinical trials with a focus on sedation- and hypotension-related adverse events, and drug interactions with alcohol and antidepressants. Sources included peer-reviewed publications and internal data from the manufacturer. Expert opinion: Flibanserin is a well-tolerated and effective treatment that decreases distress and restores sexual desire to a level that is normative for the individual patient with HSDD. Simplification of a risk mitigation program for flibanserin in the US is likely to increase the number of prescribing clinicians if accompanied with educational efforts to clarify flibanserin’s risk-benefit profile. As flibanserin is dosed daily and may be used for a decade or more in the typical premenopausal patient, long-term pharmacovigilance data will be essential. Over time, HSDD will be treated by more nonspecialist health care professionals and flibanserin will likely become established as a significant treatment option along with other medications approved for this indication in the context of a holistic biopsychosocial treatment paradigm.

Glecaprevir/pibrentasvir for 8 weeks in treatment-naïve patients with chronic HCV genotypes 1–6 and compensated cirrhosis: The EXPEDITION-8 trial

Eight-week glecaprevir/pibrentasvir leads to high rates of sustained virological response at post-treatment week 12 (SVR12) across HCV genotypes (GT) 1-6 in treatment-naïve patients without cirrhosis. We evaluated glecaprevir/pibrentasvir once daily for 8 weeks in treatment-naïve patients with compensated cirrhosis. EXPEDITION-8 was a single-arm, multicenter, phase IIIb trial. The primary and key secondary efficacy analyses were to compare the lower bound of the 95% CI of the SVR12 rate in i) patients with GT1,2,4-6 in the per protocol (PP) population, ii) patients with GT1,2,4-6 in the intention-to-treat (ITT) population, iii) patients with GT1-6 in the PP population, and iv) patients with GT1-6 in the ITT population, to pre-defined efficacy thresholds based on historical SVR12 rates for 12 weeks of glecaprevir/pibrentasvir in the same populations. Safety was also assessed. A total of 343 patients were enrolled. Most patients were male (63%), white (83%), and had GT1 (67%). The SVR12 rate in patients with GT1-6 was 99.7% (n/N = 334/335; 95%CI 98.3-99.9) in the PP population and 97.7% (n/N = 335/343; 95% CI 96.1-99.3) in the ITT population. All primary and key secondary efficacy analyses were achieved. One patient (GT3a) experienced relapse (0.3%) at post-treatment week 4. Common adverse events (≥5%) were fatigue (9%), pruritus (8%), headache (8%), and nausea (6%). Serious adverse events (none related) occurred in 2% of patients. No adverse event led to study drug discontinuation. Clinically significant laboratory abnormalities were infrequent. Eight-week glecaprevir/pibrentasvir was well tolerated and led to a similarly high SVR12 rate as the 12-week regimen in treatment-naïve patients with chronic HCV GT1-6 infection and compensated cirrhosis. ClinicalTrials.gov, NCT03089944. This study was the first to evaluate an 8-week direct-acting antiviral (DAA) regimen active against all major types of hepatitis C virus (HCV) in untreated patients with compensated cirrhosis. High virological cure rates were achieved with glecaprevir/pibrentasvir across HCV genotypes 1-6, and these high cure rates did not depend on any patient or viral characteristics present before treatment. This may simplify care and allow non-specialist healthcare professionals to treat these patients, contributing to global efforts to eliminate HCV.

Letter from France

Letter from France

Solving the clinical inertia conundrum

Solving the clinical inertia conundrum

Commonalities and differences in the implementation of models of care for arthritis: key informant interviews from Canada.

BackgroundTimely access to effective treatments for arthritis is a priority at national, provincial and regional levels in Canada due to population aging coupled with limited health human resources. Models of care for arthritis are being implemented across the country but mainly in local contexts, not from an evidence-informed policy or framework. The purpose of this study is to examine existing models of care for arthritis in Canada at the local level in order to identify commonalities and differences in their implementation that could point to important considerations for health policy and service delivery.MethodsSemi-structured key informant interviews were conducted with 70 program managers and/or care providers in three Canadian provinces identified through purposive and snowball sampling followed by more detailed examination of 6 models of care (two per province). Interviews were transcribed verbatim and analyzed thematically using a qualitative descriptive approach.ResultsTwo broad models of care were identified for Total Joint Replacement and Inflammatory Arthritis. Commonalities included lack of complete and appropriate referrals from primary care physicians and lack of health human resources to meet local demands. Strategies included standardized referrals and centralized intake and triage using non-specialist health care professionals. Differences included the nature of the care and follow-up, the role of the specialist, and location of service delivery.ConclusionsCurrent models of care are mainly focused on Total Joint Replacement and Inflammatory Arthritis. Given the increasing prevalence of arthritis and that published data report only a small proportion of current service delivery is specialist care; provision of timely, appropriate care requires development, implementation and evaluation of models of care across the continuum of care.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-016-1634-9) contains supplementary material, which is available to authorized users.

Policy recommendations for rare disease centres of expertise

AimRare diseases are a serious public health concern and are a priority in the EU. This study aims to develop policy recommendations for rare disease centres of expertise (CoEs) in order to improve standards and quality of care. Subject and methodsA modified 3-round Delphi technique was used. Participants included rare diseases patients, carers, patient representatives and healthcare professionals (HCPs) from CoEs in two countries—Denmark and the UK. ResultsThe results suggest the need to make improvements within current CoE environments, access to CoEs and the need for coordination and cooperation of services within and outside CoEs. It is recommended that CoEs are not overly ‘medicalised’, while at the same time they should be established as research facilities. The importance of including patient representatives in CoE performance management was also highlighted. Raising awareness and provision of appropriate training amongst non-specialist HCPs is seen as a priority for early and correct diagnosis and ensuring high quality care. Similarly, provision of targeted information about patients’ illness and care was considered essential along with access to social assistance within CoEs. ConclusionsPolicy recommendations were developed in areas previously recognised as having gaps. Their implementation is expected to strengthen and improve current care provision for rare disease patients. In member states where national plans and strategies are being developed, it is recommended to replicate the methodological approach used in this study as it has proven to be a helpful tool in rare disease centres of expertise policy development.

Risk of malnutrition (over and under-nutrition): Validation of the JaNuS screening tool

Malnutrition (over and under-nutrition) is highly prevalent in patients admitted to hospital and it is a well-known risk factor for increased morbidity and mortality. Nutritional problems are often misdiagnosed, and especially the coexistence of over and undernutrition is not usually recognized. We aimed to develop and validate a screening tool for the easy detection and reporting of both undernutrition and overnutrition, specifically identifying the clinical conditions where the two types of malnutrition coexist. The study consisted of three phases: 1) selection of an appropriate study population (estimation sample) and of the hospital admission parameters to identify overnutrition and undernutrition; 2) combination of selected variables to create a screening tool to assess the nutritional risk in case of undernutrition, overnutrition, or the copresence of both the conditions, to be used by non-specialist health care professionals; 3) validation of the screening tool in a different patient sample (validation sample). Two groups of variables (12 for undernutrition, 7 for overnutrition) were identified in separate logistic models for their correlation with the outcome variables. Both models showed high efficacy, sensitivity and specificity (overnutrition, 97.7%, 99.6%, 66.6%, respectively; undernutrition, 84.4%, 83.6%, 84.8%). The logistic models were used to construct a two-faced test (named JaNuS - Just A Nutritional Screening) fitting into a two-dimension Cartesian coordinate graphic system. In the validation sample the JaNuS test confirmed its predictive value. Internal consistency and test-retest analysis provide evidence for the reliability of the test. The study provides a screening tool for the assessment of the nutritional risk, based on parameters easy-to-use by health care personnel lacking nutritional competence and characterized by excellent predictive validity. The test might be confidently applied in the clinical setting to determine the importance of malnutrition (including the copresence of over and undernutrition) as a risk factor for morbidity and mortality.