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Objectives: Our aims were to examine AMR‐specific and AMR‐sensitive factors associated with antibiotic consumption in Nepal between 2006 and 2016, to explore health care‐seeking patterns and the source of antibiotics. Methods: Cross‐sectional data from children under five in households in Nepal were extracted from the 2006, 2011 and 2016 Demographic Health Surveys (DHS). Bivariable and multivariable analyses were carried out to assess the association of disease prevalence and antibiotic use with age, sex, ecological location, urban/rural location, wealth index, household size, maternal smoking, use of clean fuel, sanitation, nutritional status, access to health care and vaccinations. Results: Prevalence of fever, acute respiratory infection (ARI) and diarrhoea decreased between 2006 and 2016, whilst the proportion of children under five receiving antibiotics increased. Measles vaccination, basic vaccinations, nutritional status, sanitation and access to health care were associated with antibiotic use. Those in the highest wealth index use less antibiotics and antibiotic consumption in rural areas surpassed urban regions over time. Health seeking from the private sector has overtaken government facilities since 2006 with antibiotics mainly originating from pharmacies and private hospitals. Adherence to WHO‐recommended antibiotics has fallen over time. Conclusions: With rising wealth, there has been a decline in disease prevalence but an increase in antibiotic use and more access to unregulated sources. Understanding factors associated with antibiotic use will help to inform interventions to reduce inappropriate antibiotic use whilst ensuring access to those who need them.

Background: The Oxford Big Data Institute, multiple sclerosis (MS) physicians and Novartis aim to address unresolved questions in MS with a novel comprehensive clinical trial data set. Objective: The objective of this study is to describe the Novartis–Oxford MS (NO.MS) data set and to explore the relationships between age, disease activity and disease worsening across MS phenotypes. Methods: We report key characteristics of NO.MS. We modelled MS lesion formation, relapse frequency, brain volume change and disability worsening cross-sectionally, as a function of patients’ baseline age, using phase III study data (≈8000 patients). Results: NO.MS contains data of ≈35,000 patients (>200,000 brain images from ≈10,000 patients), with >10 years follow-up. (1) Focal disease activity is highest in paediatric patients and decreases with age, (2) brain volume loss is similar across age and phenotypes and (3) the youngest patients have the lowest likelihood (Conclusion: NO.MS will illuminate questions related to MS characterisation, progression and prognosis. Age modulates relapse frequency and, thus, the phenotypic presentation of MS. Disease worsening across all phenotypes is mediated by age and appears to some extent be independent from new focal inflammatory activity.

Background Gout treatment is not optimized globally, often due to therapeutic inertia by physicians or poor adherence to urate-lowering medications by patients. A patient decision aid (PDA) to facilitate shared decision making (SDM) in gout treatment may overcome these physician-patient barriers. Objective The study explored the views of physicians and patients on a novel locally designed gout treatment PDA prototype. Design Qualitative descriptive design was used to gather data from in-depth-interviews (IDI) and focus group discussions (FGD). Data analysis was via thematic analysis. Emergent themes shaped a revised version of the PDA. Setting and participants Adult Asian patients with recent acute gout exacerbations and local Primary Care Physicians (PCP) in Singapore were purposefully chosen. 15 patients with gout and 11 PCPs participated across three IDIs and six FGDs, with the investigators exploring their views of a prototype gout treatment PDA. Results Patients and physicians generally concurred with the content and design of the PDA prototype. However, while patients preferred fewer treatment details, the PCPs desired more information. Patients preferred the display of statistics, while PCPs felt that numbers were not relevant to patients. The latter were hesitant to include treatment options that were unavailable in primary care. Both stakeholders indicated that they would use the PDA during a consultation. PCPs would need further training in SDM, given a lack of understanding of it. Conclusion and patient contribution Patients will be the prime users of the PDA. While their views differed partially from the physicians, both have jointly developed the novel gout treatment PDA.

Background Shared decision making (SDM) in mental health may contribute to greater patient satisfaction and is sometimes associated with better health outcomes. Here, SDM should not only involve service users and clinicians but also involve the service users' caregivers. Aim This study aimed to achieve better insight into the current SDM patterns of triads of service users, caregivers and clinicians in inpatient mental health care and the three parties' expectations towards the prospects of triadic SDM. Design The current research uses data from a representative cross‐sectional study on caregivers in psychiatric inpatient treatment. We analysed data on n = 94 triads of service users, their caregivers and their clinicians. Results All three parties acknowledge caregivers to be of great support to monitor the progress with mental disease. The caregiver's role during consultations is most often described as being an expert, receiving or providing information and supporting service users. However, caregivers at times try to seek support for themselves during caregiver‐clinician interaction, or their behaviour was described as unhelpful. The potential prospects of caregiver involvement are clearly acknowledged despite the low implementation of caregiver involvement in this sample (only in one‐third of the cases). Conclusion Triadic SDM rarely takes place in routine inpatient care. First, there should be a focus on interventions aiming at inviting caregivers to consultations. Only in the second step should a better conceptualisation of triadic SDM be undertaken. Public Contribution Early results were discussed with a local peer support group for caregivers of individuals living with mental illness.

Background: Existing severity measurements in multiple sclerosis (MS) are often cross-sectional, making longitudinal comparisons of disease course between individuals difficult. Objective: The objective of this study is to create a severity metric that can reliably summarize a patient’s disease course. Methods: We developed the nARMSS – normalized ARMSS (age-related MS severity score) over follow-up, using the deviation of individual ARMSS scores from the expected value and integrated over the corresponding time period. The nARMSS scales from −5 to +5; a positive value indicates a more severe disease course for a patient when compared to other patients with similar disease timings. Results: Using Swedish MS registry data, the nARMSS was tested using data at 2 and 4 years of follow-up to predict the most severe quartile during the subsequent period up to 10 years total follow-up. The metric used was area under the curve of the receiver operating characteristic (AUC-ROC). This resulted in measurements of 0.929 and 0.941. In an external Canadian validation cohort, the equivalent AUC-ROCs were 0.901 and 0.908. Conclusion: The nARMSS provides a reliable, generalizable and easily measurable metric which makes longitudinal comparison of disease course between individuals feasible.

Background Patient empowerment can improve health‐related outcomes and is important in chronic conditions, such as arthritis. This study aimed to validate the Health Care Empowerment Questionnaire (HCEQ), a patient‐reported experience measure of empowerment, for use with patients with arthritis and other rheumatic diseases. Methods The HCEQ measures Patient Information Seeking (or Involvement in Decisions) and Healthcare Interaction Results (or Involvement in Interactions) and asks respondents to answer questions in two ways: whether they feel something happened and its importance to them. Face validity was assessed through qualitative data (n = 8, nominal group technique; n = 55, focus groups). Measure structure was assessed through confirmatory factor analysis (CFA); internal consistency was also assessed (n = 9226). Test‐retest reliability was assessed with sub‐sample of participants (n = 182). Results We found adequate face validity of the HCEQ for patients with arthritis. The CFA indicated good fit to the data for the two‐factor structure of the HCEQ (RMSEA = 0.075; CFI = 0.987; TLI = 0.978; SRMR = 0.026). Internal consistency was strong (α=0.94 for both subscales). Test‐retest reliability was moderate for Patient Information Seeking (ICC=0.67) and good for Healthcare Interaction Results (ICC=0.77). Conclusions The HCEQ, with modifications, demonstrated promising psychometric properties within this sample, laying the foundation for further assessment. This work supports the HCEQ as an appropriate instrument for examining experiences with and perceived importance of empowerment in individuals with arthritis and other rheumatic conditions. Patient Contribution Patients contributed to the assessment of face validity. As a measure of patient empowerment, the HCEQ’s use can enable further participation of patients in health care.

Background: The expanded disability status scale (EDSS) is the standard clinical outcome measure in primary progressive multiple sclerosis (PPMS), even though the timed 25-foot walk (T25FW), nine-hole peg test (NHPT) or combinations of these measures may be more useful. The paced auditory serial addition test (PASAT) is a widely used cognitive measure in MS, but little is known about change in PASAT scores over time in PPMS. Objective: The objective of this study is to compare clinical outcome measures in a large PPMS trial data set. Methods: We determined significant worsening events on the EDSS, T25FW and NHPT, and PASAT scores over the course of this 3-year trial. We compared unconfirmed, confirmed and sustained disability worsening and contrasted disability worsening with similarly defined improvement. We examined the association of baseline characteristics with the risk of disability worsening at 12, 24 and 36 months with logistic regression models. Results: The EDSS and T25FW showed most worsening events, while only few patients worsened on the NHPT. Adding the NHPT to a combined outcome added only few further worsening events. PASAT scores slightly increased over time, possibly due to a practice effect. Conclusion: Both the EDSS and T25FW, but not NHPT or PASAT, appear to be useful outcome measures in PPMS.

The present study was carried out to evaluate the performance of two novel gladiolus hybrid selections IIHRG-7 and IIHRG-11 along with commercial checks, for flower quality traits and Fusarium wilt resistance in completely randomized block design, during 2012-13 to 2014-15. Three years data were pooled and analyzed statistically. The hybrid selections IIHRG-7 and IIHRG-11 had been developed through hybridization by crossing Arka Meera x Picardy and Gold Medal 412 x Arka Poonam, respectively followed by selection. IIHRG-7 has novel flower colour (as per RHS Colour Chart) i.e., Red-Purple (65.B) having Red-Purple (62.A) streaks with Red-Purple (67.B) splash and spike with variegated florets, while, IIHRG-11 has novel floret colour as Red (41.C) having Red (41.A) margin. Blotch Red (46.B) with yellow (13.C) border and resistance to Fusarium wilt disease. These hybrid selections are suitable for cut-flower and flower arrangement purposes. Further, these hybrid selections will be useful for developing new gladiolus hybrid selections with novel traits and resistance to Fusarium wilt disease.

The analysis of variance for 6 quantitative traits and 30 qualitative traits showed significant differences among the 400 genotypes of mango which indicates the existence of high heterozygosity. Among the 18 clusters formed, the highest fruit weight of 1404.27 g was recorded in cluster 10 followed by cluster 15 with 1280.67g whereas the lowest fruit weight was recorded in cluster 16 (30.94g). The highest fruit length (22.03 cm) was recorded in cluster 10 followed by 17.80 cm in cluster 14. Similarly, the fruit diameter was highest (12.18 cm) in cluster 10 followed by 12.03 cluster 4. The fruit thickness was highest (10.60 cm) in cluster 15 followed by cluster 4 with 9.96 cm. The pulp recovery was maximum (87.16%) in cluster-14 followed by clusters 4 and 18 with 79.28 and 78.41 %, respectively. Clusters 15 had the varieties meant for pickle making and possessed less TSS whereas the TSS of above 19°B was recorded in cluster 2. The maximum inter-cluster (D2) value was obtained between cluster 10 and cluster 11. These clusters may be used for hybridization programs due to wide variability and the possibility of transgressive sergeants. Estimates of phenotypic variance and genotypic variance had only a narrow difference for all six characters studied indicating that these characters are not much influenced by environmental factors and highly heritable which can be exploited by adopting clonal selection or selection of chance seedlings and selection as parents for breeding purpose.

The present investigation was carried out at the Department of Floriculture and Landscape Architecture, Horticultural College and Research Institute, Tamil Nadu Agricultural University, Coimbatore during 2017-2019. The study involved nine jasmine genotypes, four falling under the commercially cultivated types and five belonging to underutilized species or ‘lesser-known species’. The study was undertaken to investigate and document the palynological parameters of jasmines which could serve as a reliable reference for future jasmine breeding programmes. The palynological investigations were carried out using Scanning Electron Microscopy (SEM), haemocytometry, acetocarmine test, and in vitro pollen germination. The pollen morphology analysis indicated wide variation among the species for the shape of the pollen grain, ranging from tricolpate to prolate; the exine ornamentation was reticulate in all the genotypes. Pollen output was the highest in J. rigidum (28,660 pollen/flower) and the lowest in (625 pollen/ flower) in J. sambac cv. Ramanathapuram Gundumalli. The maximum pollen germination rate and pollen tube length were recorded in J. rigidum.

Phytophthora parasitica var. nicotianae is a major fungal pathogen that causes foot rot, root rot, crown rot, gummosis, leaf fall, and brown rot diseases in Nagpur mandarin in the entire Vidarbha region of Maharashtra. For the efficient management of root rot and gummosis due to Phytophthora, the potassium salt of phosphonic acid (PSPA) was evaluated under field and laboratory conditions. In field trials, infected plants were treated with different concentrations of PSPA by foliar spray and soil drenching. The results revealed that foliar spray + soil drenching of PSPA at 3 ml/liter water was better with respect to the average reduction in no. of lesion with oozing (28.39%), minimum in feeder root index (2.17), increase in canopy volume (11.15%) and higher fruit yield (65.89 kg/ per tree). The effect of PSPA was assayed at three different concentrations against P. nicotianae under in vitro. PSPA was found most effective in arresting the growth of P. nicotianae as complete (100%) inhibition observed in tested doses.

The experiment was conducted with the objective to study the effect of different anti-senescence compounds like putrescine and benzyl adenine (BA) on vegetative, floral, and post-harvest keeping quality of chrysanthemum cv. Punjab Shyamli. The experiment was conducted in a randomized block design (RBD) and replicated thrice. Putrescine (@ 50, 100, and 150 ppm) and benzyl-adenine (@ 100, 150, and 200 ppm) were sprayed twice on cv. Punjab Shyamli (spray type and pompon) at bud initiation stage and at fully developed flower buds. Control plants were sprayed with normal water. Floral parameters were delayed and the vase life of cut stems was enhanced by benzyl adenine @ 200 ppm. The maximum delay of flower opening stage (116.33 days), number of sprays (5.00), and vase life (27.22 days) were obtained with benzyl-adenine @ 200 ppm treatment. The flower diameter was 4.53 cm with benzyl-adenine @ 200 ppm compared to 2.87 cm in control.

Background Let's Discuss Health (LDH) is a website that encourages patients to prepare their health-care encounters by providing communication training, review of topics and questions that are important to them. Objective To describe LDH implementation during primary care (PC) visits for chronic illnesses. Methods Design: Descriptive mixed-method study. Setting 6 PC clinics. Participants 156 patients and 51 health-care providers (HCP). Intervention LDH website implementation. Outcome measures Perceived quality and usefulness of LDH; perceived quality of HCP-patient communication; patient activation; LDH integration in routine PC practices and barriers to its use. Results Patients reported a positive perception of the website in that it helped them to adopt an active role in the encounters; recall their visit agenda and reduce encounter-related stress; feel more confident to ask questions, feel more motivated to prepare their future medical visits and improve their chronic illness management. However, a certain disconnect emerged between HCP and patient perceptions as to the value of LDH in promoting a sense of partnership and collaboration. The main barriers to the use of LDH are HCP lack of interest, limited access to technology, lack of time and language barriers. Conclusion Our findings indicate that it is advantageous for patients to prepare their medical encounters. However, the study needs to be replicated in other medical environments using larger and more diverse samples. Patient and public contribution Patient partners were involved in the conduct of this study.

Background Missed test-results and failure to follow-up test-results are major patient safety concerns. Strategies to improve test-results management have predominantly focused on clinician-based interventions, with patients principally involved in studies of test-result communication preferences, the impact of patient portals or experiences with reporting processes in primary care. Objective To identify consumer perspectives and experiences of the challenges they have faced with test-results management, through consumer participation in qualitative data analysis. Design and participants Volunteers (n = 10) were recruited to participate in a health consumer reference group workshop on test-results management. Prior to the workshop, consumers selected topics for discussion using a preference poll. During the workshop, consumers participated in qualitative data analysis of de-identified excerpts of previously collected interview data discussing hospital test-results management. Researchers (n = 5) guided consumers through the analytical process and discussion of themes. Discussions were audio-recorded and transcribed for qualitative analysis. Results Consumer-selected topics for discussion were 'Transitions of Care' and 'Access'. Consumer data analysis prompted broader discussion including lived experiences. Following the workshop, a second level of content analysis pinpointed issues with implications for patient safety highlighting that consumers were astutely aware of macrolevel 'Systems Factors' relating to 'Emergency Departments' and the health system, as well as microlevel 'Patient Factors' (eg patient preferences and circumstances) which impact a patient's understanding during the 'Communication' (clinician to patient/between clinicians) of test-results 'Information' (or lack thereof). Conclusions Consumers identified the challenges patients experience with test-results management, and our findings highlight areas for potential improvement in patient safety. Patient or public contribution Ten health consumer volunteers actively participated in the test-results management data analysis workshop conducted in this study. Two health consumers also volunteered to read and comment on the draft manuscript.

Context Pre‐appointment written materials, including letters and leaflets, are commonly used by healthcare organisations to deliver professional‐patient interactions. The written materials potentially change patients’ knowledge and behaviour as part of a healthcare intervention but have received little investigation. Objective To describe the content of pre‐appointment written materials through a behaviour change intervention perspective. Design Mixed methods study with an online questionnaire about pre‐appointment written materials and an analysis of actual materials. Questionnaire data were analysed descriptively and pre‐appointment materials by qualitative framework analysis. Setting and participants Children's community/outpatient occupational therapy, physiotherapy and/or speech and language therapy services across the UK. Service managers/clinical leads provided data. Intervention Pre‐appointment written materials. Results Questionnaire responses were received from n = 110 managers/clinical leads from n = 58 NHS organisations. Written materials (n = 64) were received from n = 24 organisations. Current materials are used by therapy services as a conduit to convey the therapy service's expectations related to: accessing the service, decision‐making about care and help‐giving. The materials enrol the parent and child to the therapy services’ expectations by behaviour change techniques. The materials configure the parent/child expectations, knowledge and behaviour towards the therapy services’ operational procedures. Conclusion Pre‐appointment written materials configure patients to organisations’ operational procedures. The written materials currently lack support for parent/child empowerment, shared decision‐making and self‐management to improve health. Patient Contribution Four parents of children accessing therapy services were involved in the study. The parents shared their experiences to highlight the importance of the topic and contributed to the final research design and methods.

Background: Cognitive decline remains difficult to predict as structural brain damage cannot fully explain the extensive heterogeneity found between MS patients. Objective: To investigate whether functional brain network organization measured with magnetoencephalography (MEG) predicts cognitive decline in MS patients after 5 years and to explore its value beyond structural pathology. Methods: Resting-state MEG recordings, structural MRI, and neuropsychological assessments were analyzed of 146 MS patients, and 100 patients had a 5-year follow-up neuropsychological assessment. Network properties of the minimum spanning tree (i.e. backbone of the functional brain network) indicating network integration and overload were related to baseline and longitudinal cognition, correcting for structural damage. Results: A more integrated beta band network (i.e. smaller diameter) and a less integrated delta band network (i.e. lower leaf fraction) predicted cognitive decline after 5 years ([Formula: see text]), independent of structural damage. Cross-sectional analyses showed that a less integrated network (e.g. lower tree hierarchy) related to worse cognition, independent of frequency band. Conclusions: The level of functional brain network integration was an independent predictive marker of cognitive decline, in addition to the severity of structural damage. This work thereby indicates the promise of MEG-derived network measures in predicting disease progression in MS.

The present investigation was carried out to standardize nitrogen application for standard potted Chrysanthemum morifolium cv. Kikiobiory at Department of Floriculture and Landscaping, PAU, Ludhiana during the year 2015-16. Six treatments of nitrogen viz. 0, 100, 200, 300, 400 and 500 mg/pot were applied twice in the last week of September and October. The results of the study revealed that nitrogen application had significant effect on all the vegetative and floral parameters. The largest flower size (17.69 cm) was obtained with the nitrogen application of 400 mg/pot which was at par with 500 mg/ pot (17.67 cm). Application of nitrogen at 500 mg/pot recorded the highest plant height (75.47 cm), number of leaves per plant 75 days after planting (30.92), number of root suckers per plant (11.47) and delayed flower bud appearance (93.78 days), color break stage (122.59 days) and also shown flower quality deterioration by reducing the flowering duration (5.84 days) as compared to the other treatments. Therefore, it was concluded that 300 mg of nitrogen per pot applied twice was the standard dose for quality flower pot production in Chrysanthemum morifolium cv. Kikiobiory.

Edible mushrooms from India (18 isolates belonging to 4 species) were profiled for protein, free and bound amino acids (AA). The protein content (range of 9.5-32.6%) was highest in Pleurotus cintrinopileatus and P. sajor-caju; free AA (range of 11.6-73.1 mg/g DW) was higher in Hypsizygus tessulatus and Agrocybe aegerita, bound AA (range of 57.4- 171.9 mg/g DW) was also high in H. ulmarius, P. djamor, P. florida, P. sajor-caju. The essential free and bound AAs and chemical scores of isoleucine, tryptophan, phenylalanine were highest, higher in Hericium erinaceus, P. cystidiosus, P. eryngi, P. sajor-caju. The isoleucine (Ile) score in the free fraction of selected mushrooms was comparable or higher than the best five plant sources, while tryptophan (Trp) scores were almost double. Thus, these mushrooms are good sources of Ile, Trp, and aromatic amino acids. The conditionally essential and nonessential AAs were also quantified. This study reveals the diversity in protein and AA and nutritionally superior mushroom species.

Dendrobium orchid cv. Singapore White is cultivated commercially for cut flower purpose. The performance of this orchid in response to the different nutrient concentrations was evaluated under the agro-climatic conditions of Kodagu during 2017-2020. Twelve nutrient doses were applied as foliar sprays at weekly intervals to study their effect on vegetative growth, flower production and quality parameters of the cut flowers. Plant height, number of leaves plant-1, leaf area, number of pseudobulbs plant-1, number of spikes plant-1 year-1, number of flowers spike-1 and spike length varied significantly with the nutrient doses. Foliar spray of 30:20:20 NPK 0.1% at weekly intervals recorded the maximum plant height of 53.21cm, number of spikes plant-1year-1 (10.01) with spike length of 44.43 cm and 16.20 flower spike-1.

In Sudan's agro-ecological zone, tomato production is constrained by a dearth of high fruit yielding and quality (Solanum lycopersicum [L.]) varieties for cultivation in polyhouse. Exotic and indeterminate tomato genotypes with high fruit yield and quality were evaluated to gain information on variation for fruit yield, quality, shape, and interdependence between traits in Sudan agroecology. The seed was sown during 2018 and 2019. Fruit yield, quality, and phenomic traits were measured. Development, °Brix, and fruit yield responded to microclimate factors in the polyhouse over years. ‘Bruno’ was the best for fruit size and ‘Tofi’ for fruit number. Vine length at flowering, fruits/cluster, days to 50% flowering, and days to first flowering and fruit brix are heritable. The genotype responses suggest the need for stable and to develop high-yielding and quality tomato varieties for protected cultivation in the Sudan agro-ecological zone. Testing stable genotypes in locations could enhance breeding efficiency with respect to genotypic stability. The yield data gained under tropical conditions identified traits of superior genotypes for multiple environment studies and to encourage tomato growers to consider protected cultivation in the tropics.

Background: The absence of reliable imaging or biological markers of phenotype transition in multiple sclerosis (MS) makes assignment of current phenotype status difficult. Objective: The authors sought to determine whether clinical information can be used to accurately assign current disease phenotypes. Methods: Data from the clinical visits of 14,387 MS patients in Sweden were collected. Classifying algorithms based on several demographic and clinical factors were examined. Results obtained from the best classifier when predicting neurologist recorded disease classification were replicated in an independent cohort from British Columbia and were compared to a previously published algorithm and clinical judgment of three neurologists. Results: A decision tree (the classifier) containing only most recently available expanded disability scale status score and age obtained 89.3% (95% confidence intervals (CIs): 88.8–89.8) classification accuracy, defined as concordance with the latest reported status. Validation in the independent cohort resulted in 82.0% (95% CI: 81.0–83.1) accuracy. A previously published classification algorithm with slight modifications achieved 77.8% (95% CI: 77.1–78.4) accuracy. With complete patient history of 100 patients, three neurologists obtained 84.3% accuracy compared with 85% for the classifier using the same data. Conclusion: The classifier can be used to standardize definitions of disease phenotype across different cohorts. Clinically, this model could assist neurologists by providing additional information.

Iron is one of the most important micronutrients for human health. Iron deficient diet and defective iron absorption are among the major reasons for iron malnutrition. Mushrooms are edible fungi, which are a very good source of iron and can be easily grown on agricultural residues at-home scale, dehydrated, and stored in powder form, which can supplement the daily diet. Although mushrooms in general and oyster mushrooms, in particular, are a rich source of iron, yet, have not become a recommended diet by nutritionists due to lack of data pertaining to its bioavailability from mushrooms. Data has been generated in the present study on the in vitro bioavailability of iron from non-fortified and iron-fortified Hypsizygus ulmarius, which is a commercially grown species. This is the first report pertaining to the bioavailability of iron from iron-fortified mushrooms. A delivery system for human nutrition was also standardized in the form of Arka Mushroom Fortified Rasam Powder using iron-fortified and non-fortified mushrooms, which can be used to mitigate iron malnutrition. The data generated in this study will help in providing application techniques to use mushrooms as a dietary source of iron in everyday diet to mitigate iron deficiency.

Objective: To understand how longitudinal serum neurofilament light chain (sNfL) patterns can inform its use as a prognostic biomarker in multiple sclerosis (MS) and evaluate whether sNfL reflects MS disease activity and disease-modifying therapy usage. Methods: This was a post hoc analysis of longitudinal data and samples from the ADVANCE trial (NCT00906399) of patients with relapsing–remitting MS (RRMS). sNfL was measured every 3 months for 2 years, then every 6 months for 4 years. Regression models explored how sNfL data predicted 4-year values of brain volume, expanded disability status scale score, and T2 lesions. sNfL levels were assessed in those receiving placebo, peginterferon beta-1a, and those with disease activity. Results: Baseline sNfL was a predictor of 4-year brain atrophy and development of new T2 lesions. Clinical ( p = 0.02) and magnetic resonance imaging (MRI) ( p Conclusion: These data support sNfL as a prognostic and disease-monitoring biomarker for RRMS.

Background: Pregnancies have an impact on the disease course of multiple sclerosis (MS), but their relationship with MS risk is yet unclear. Objective: To determine the relationships of pregnancies and gynecological diagnoses with MS risk. Methods: In this retrospective case–control study, we assessed differences in gynecological International Classification of Diseases, 10th Revision (ICD-10) code recording rates between women with MS ( n = 5720), Crohn’s disease ( n = 6280), or psoriasis ( n = 40,555) and women without these autoimmune diseases ( n = 26,729) in the 5 years before diagnosis. Results: Twenty-eight ICD-10 codes were recorded less frequently for women with MS as compared to women without autoimmune disease, 18 of which are pregnancy-related. After adjustment for pregnancies, all codes unrelated to pregnancies were still negatively associated with MS. In a sensitivity analysis excluding women with evidence for possible demyelinating events before diagnosis, all associations were more pronounced. In comparison to women with psoriasis, most associations could be confirmed; that was not true in comparison to women with Crohn’s disease. Conclusion: Our findings provide evidence for a possible protective effect of pregnancies on MS risk likely independent of or in addition to a previously suggested reversed causality. The negative associations of gynecological disorders with disease risk need further investigation. The associations might be shared by different autoimmune diseases.

Background Physician associates (PAs) are one of many new mid-level health practitioner roles being introduced worldwide. They are a recent innovation in English hospitals. Patient confusion with novel mid-level practitioner titles and roles is well documented, alongside evidence of a positive association between patients' ability to identify practitioners and patient satisfaction. No prior research developed an intervention to introduce PAs or any other new practitioner role to hospital patients. Objective To develop, with patient and public involvement and engagement (PPIE), an intervention for introducing the PA role to hospital patients, and to test feasibility. Methods Intervention development was underpinned by an experience-based co-design approach. Workshop participants generated ideas for introducing PAs, subsequently explored in semi-structured interviews with hospital patients (n = 13). Interview findings were used by participants in a second workshop to design the intervention. Feasibility of the intervention was assessed in relation to its acceptability and efficacy using semi-structured interviews with hospital patients (n = 20) and PAs (n = 3). Results The intervention developed was a patient information leaflet. It was considered feasible to use in the hospital setting, helpful to patients in understanding the PA role and acceptable to both patients and PAs. The intervention was also appreciated by patients for providing reassurance of care and support. Conclusions An experience-based co-design approach enabled development of an intervention tailored to patients' experiential preferences. Positive evidence of feasibility and utility is encouraging, supporting future larger-scale testing. Patient and public contribution PPIE representatives were involved in the study design, intervention development and data interpretation.

Background: Progressive multifocal leukoencephalopathy (PML) can in rare cases occur in natalizumab-treated patients with high serum anti-JCPyV antibodies, hypothetically due to excessive blockade of immune cell migration. Objective: Immune cell recruitment to the central nervous system (CNS) was assessed in relapsing-remitting multiple sclerosis (RRMS) patients stratified by low versus high anti-JCPyV antibody titers as indicator for PML risk. Methods: Cerebrospinal fluid (CSF) cell counts of 145 RRMS patients were quantified by flow cytometry. Generalized linear models were employed to assess influence of age, sex, disease duration, Expanded Disability Status Scale (EDSS), clinical/radiological activity, current steroid or natalizumab treatment, as well as anti-JCPyV serology on CSF cell subset counts. Results: While clinical/radiological activity was associated with increased CD4, natural killer (NK), B and plasma cell counts, natalizumab therapy reduced all subpopulations except monocytes. With and without natalizumab therapy, patients with high anti-JCPyV serum titers presented with increased CSF T-cell counts compared to patients with low anti-JCPyV serum titers. In contrast, PML patients assessed before ( n = 2) or at diagnosis ( n = 5) presented with comparably low CD8 and B-cell counts, which increased after plasma exchange ( n = 4). Conclusion: High anti-JCPyV indices, which could be indicative of increased viral activity, are associated with elevated immune cell recruitment to the CNS. Its excessive impairment in conjunction with viral activity could predispose for PML development.

Background: Clinical measures in multiple sclerosis (MS) face limitations that may be overcome by utilising smartphone keyboard interactions acquired continuously and remotely during regular typing. Objective: The aim of this study was to determine the reliability and validity of keystroke dynamics to assess clinical aspects of MS. Methods: In total, 102 MS patients and 24 controls were included in this observational study. Keyboard interactions were obtained with the Neurokeys keyboard app. Eight timing-related keystroke features were assessed for reliability with intraclass correlation coefficients (ICCs); construct validity by analysing group differences (in fatigue, gadolinium-enhancing lesions on magnetic resonance imaging (MRI), and patients vs controls); and concurrent validity by correlating with disability measures. Results: Reliability was moderate in two (ICC = 0.601 and 0.742) and good to excellent in the remaining six features (ICC = 0.760–0.965). Patients had significantly higher keystroke latencies than controls. Latency between key presses correlated the highest with Expanded Disability Status Scale ( r = 0.407) and latency between key releases with Nine-Hole Peg Test and Symbol Digit Modalities Test (ρ = 0.503 and r = −0.553, respectively), ps Conclusion: Keystroke dynamics were reliable, distinguished patients and controls, and were associated with clinical disability measures. Consequently, keystroke dynamics are a promising valid surrogate marker for clinical disability in MS.

Objectives To explore the perceptions of patients undergoing percutaneous coronary intervention (PCI) regarding their pre‐operative health education. Methods A qualitative study using semi‐structured, in‐depth interviews was conducted in one cardiology unit in China from July 2019 to December 2019. Purposeful sampling of 17 patients undergoing PCI was interviewed about their perceptions of pre‐operative health education. Thematic analysis of the transcribed data was then used to identify the themes. Results Four themes emerged from the data:(a) triple roles of pre‐operative education with the categories of relief (reliving fear); burden (leading to stress); and meaningless (changing nothing); (b) family member involvement with the categories of shared responsibility and family members’ duty; (c) facilitators in the process of pre‐operative health education with the categories of emotional support, plain language and individualized pre‐operative education; (d) inhibitors in the process of pre‐operative health education with the categories of contradiction and threatening words. Conclusions Pre‐operative health education for patients undergoing PCI should be aligned with the individual patients’ information‐seeking styles and personal differences, emphasizing individualized patient education. Traditional Chinese philosophy should be considered in the practice of pre‐operative education for patients undergoing PCI, which emphasizes family member involvement; at the same time, patient empowerment and self‐care should also be stressed. In addition, emotional support and plain language from health professionals are important in pre‐operative health education for patients undergoing PCI; contradiction should be avoided, and threatening words should be used with caution and with consideration for cultural variations during pre‐operative education for patients undergoing PCI.

Background: Network abnormalities could help explain physical disability in multiple sclerosis (MS), which remains poorly understood. Objective: This study investigates functional network efficiency changes in the sensorimotor system. Methods: We included 222 MS patients, divided into low disability (LD, Expanded Disability Status Scale (EDSS) ⩽3.5, n = 185) and high disability (HD, EDSS ⩾6, n = 37), and 82 healthy controls (HC). Functional connectivity was assessed between 23 sensorimotor regions. Measures of efficiency were computed and compared between groups using general linear models corrected for age and sex. Binary logistic regression models related disability status to local functional network efficiency (LE), brain volumes and demographics. Functional connectivity patterns of regions important for disability were explored. Results: HD patients demonstrated significantly higher LE of the left primary somatosensory cortex (S1) and right pallidum compared to LD and HC, and left premotor cortex compared to HC only. The logistic regression model for disability ( R2 = 0.38) included age, deep grey matter volume and left S1 LE. S1 functional connectivity was increased with prefrontal and secondary sensory areas in HD patients, compared to LD and HC. Conclusion: Clinical disability in MS associates with functional sensorimotor increases in efficiency and connectivity, centred around S1, independent of structural damage.

Background People with severe mental illness (SMI) often have poorer physical health than the general population. A coproduced physical activity intervention to improve physical activity for people with SMI in Northern Ireland was evaluated by co‐researchers (researchers with lived experience of SMI) and academic researchers using a new approach to participatory data analysis called participatory theme elicitation (PTE). Objective Co‐researchers and academic researchers analysed the data from the pilot study using PTE. This paper aimed to compare these analyses to validate the findings of the study and explore the validity of the PTE method in the context of the evaluation of a physical activity intervention for individuals with SMI. Results There was alignment and congruence of some themes across groups. Important differences in the analyses across groups included the use of language, with the co‐researchers employing less academic and clinical language, and structure of themes generated, with the academic researchers including subthemes under some umbrella themes. Conclusions The comparison of analyses supports the validity of the PTE approach, which is a meaningful way of involving people with lived experience in research. PTE addresses the power imbalances that are often present in the analysis process and was found to be acceptable by co‐researchers and academic researchers alike.

Background Most concussion studies have focused on the perspectives and expertise of health‐care providers and caregivers. Very little qualitative research has been done, engaging the adolescents who have suffered concussion and continue to experience the consequences in their everyday life. Objective To understand the experiences of recovery from the perspective of adolescent patients of concussion and to present the findings through their voices. Methods Two semi‐structured focus groups and two narrative interviews were conducted with a small group of 7 adolescents. Grounded theory was used to analyse the data. Results Participants experience continuing difficulty 1‐5 years after treatment with cognitive, emotional, social and mental well‐being. The overriding experience among older adolescents (17‐20) is a sense of irreversibility of the impact of concussion in all these areas. Conclusion There is a significant gap between the medical determination of recovery and what patients understand as recovery. Adolescents do not feel ‘recovered’ more than a year after they are clinically assessed as ‘good to go’. Systematic follow‐up and support from a multi‐disciplinary health‐care team would strengthen youths' coping and resilience.

Background As the coronavirus disease 2019 (COVID‐19) pandemic is sweeping across the globe, there is an urgent need to develop effective vaccines as the most powerful strategy to end the pandemic. This study aimed to examine how factors related to vaccine characteristics, their social normative influence and convenience of vaccination can affect the public's preference for the uptake of the COVID‐19 vaccine in China. Methods An online discrete choice experiment (DCE) survey was administered to a sample of China's general population. Participants were asked to make a series of hypothetical choices and estimate their preference for different attributes of the vaccine. A mixed logit regression model was used to analyse the DCE data. Willingness to pay for each attribute was also calculated. Results Data of 1236 participants who provided valid responses were included in the analysis. There was strong public preference for high effectiveness of the vaccine, followed by long protective duration, very few adverse events and being manufactured overseas. Price was the least important attribute affecting the public preference in selecting the COVID‐19 vaccine. Conclusions The strong public preferences detected in this study should be considered when developing COVID‐19 vaccination programme in China. The results provide useful information for policymakers to identify the individual and social values for a good vaccination strategy. Patient or Public Contribution The design of the experimental choices was fully based on interviews and focus group discussions participated by 26 Chinese people with diverse socio‐economic backgrounds. Without their participation, the study would not be possible.

To compare the unit and total costs of three models of ART care for mother-infant pairs during the postpartum phase from provider and patient's perspectives: (i) local standard of care with women in general ART services and infants at well-baby clinics; (ii) women and infants continue to receive care through an integrated maternal and child care approach during the postpartum breastfeeding period; and (iii) referral of women directly to community adherence clubs with their infants receiving care at well-baby clinics.Capital and recurrent cost data (relating to buildings, furniture, equipment, personnel, overheads, maintenance, medication, diagnostic tests and immunisations) were collected from a provider's perspective at six sites in Cape Town, South Africa. Patient time, collected via time-and-motion observation and questionnaires, was used to estimate patient perspective costs and is comprised of lost productivity time, time spent travelling and the direct cost of travelling.The cost of postpartum ART visits under models I, II and III was US $13, US $10 and US $7 per visit for a mother-infant pair, respectively, in 2018 US$. The annual costs for the mother-infant pair utilising the average visit frequencies (a mean of 4.5, 6.9 and 6.7 visits postpartum for models I, II and III, respectively) including costs for infant immunisations, visits, medication and diagnostic tests for both mothers and infants were: I - US $222, II - US $335 and III - US $249. Sensitivity analysis to assess the impact of visit frequency on visit cost showed that Model I annual costs would be most costly if visit frequency was equalised.This comparative analysis of three models of care provides novel data on unit costs and insight into the costs to provide ART and care to mother-infant pairs during the delicate postpartum phase. These costs may be used to help make decisions around integrated services models and differentiated service delivery for postpartum WLH and their children.Comparer le coût et unitaire et total de trois modèles de soins ART pour les paires mère-enfant pendant la phase post-partum selon les perspectives du fournisseur et du patient: (I) - normes locales des soins avec les femmes dans les services généraux de l'ART et les nourrissons dans les cliniques de bien-être pour bébés; (II) - les femmes et les nourrissons continuent de recevoir des soins via une approche intégrée de soins maternels et infantiles pendant la période d'allaitement post-partum; et (III) - orientation des femmes directement vers les clubs d'adhésion communautaires, leurs nourrissons recevant des soins dans les cliniques de bien-être pour bébés pour bébés. MÉTHODES: Les données sur les coûts d'investissement et les coûts récurrents (relatifs aux bâtiments, au mobilier, à l'équipement, au personnel, aux frais généraux, à l'entretien, aux médicaments, aux tests de diagnostic et aux vaccinations) ont été recueillies selon le point de vue du prestataire sur six sites à Cape Town, en Afrique du Sud. Le temps du patient, recueilli via l'observation du temps et des mouvements et des questionnaires, a été utilisé pour estimer les coûts selon le point de vue du patient, et comprend le temps de productivité perdu, le temps passé en déplacement et le coût direct du déplacement. RÉSULTATS: Le coût des visites ART post-partum dans les modèles I, II et III était respectivement de 13 USD, 10 USD et 7 USD par visite pour une paire mère-enfant en USD de 2018. Les coûts annuels pour la paire mère-enfant en utilisant la fréquence moyenne des visites (une moyenne de 4,5 ; 6,9 et 6,7 visites post-partum pour les modèles I, II et III respectivement), y compris les coûts des vaccinations infantiles, des visites, des médicaments et des tests diagnostiques pour les mères et les nourrissons étaient: I - 222 USD, II - 335 USD et III - 249 USD. L'analyse de sensibilité pour évaluer l'impact de la fréquence des visites sur le coût des visites a montré que les coûts annuels du modèle I seraient les plus élevés si la fréquence des visites était égalisée.Cette analyse comparative de trois modèles de soins fournit de nouvelles données sur les coûts unitaires et un aperçu des coûts de fourniture de l’ART et de soins aux paires mère-enfant pendant la phase délicate du post-partum. Ces coûts peuvent être utilisés pour aider à la prise des décisions concernant les modèles de services intégrés et la prestation de services différenciés pour les femmes en période de post-partum et leurs enfants.

Background: Little is known about the effects of changes in the presence or absence of psychiatric disorders on health care utilization in multiple sclerosis (MS). Objective: To evaluate the association between “active” mood and anxiety disorders (MAD) and health care utilization in MS. Methods: Using administrative data from Manitoba, Canada, we identified 4748 persons with MS and 24,154 persons without MS matched on sex, birth year, and region. Using multivariable general linear models, we evaluated the within-person and between-person effects of any “active” MAD on annual physician visits, hospital days, and number of drug classes dispensed in the following year. Results: Annually, the MS cohort had an additional two physician visits, two drug classes, and nearly two more hospital days versus the matched cohort. Individuals with any MAD had more physician visits, had hospital days, and used more drug classes than individuals without a MAD. Within individuals, having an “active” MAD was associated with more utilization for all outcomes than not having an “active” MAD, but the magnitude of this effect was much smaller for visits and drugs than the between-person effect. Conclusion: Within individuals with MS, changes in MAD activity are associated with changes in health services use.

Background\ud The literature regarding inclusion of service users and carers (SUACs) in the recruitment processes for future health and social work professionals has primarily presented such inclusion as positive for all. This study is novel in its exploration of the detail of SUACs' involvement and in its reach across a whole university department of health and social care disciplines.\ud \ud Objective\ud To examine the detail of ways in which SUACs were actually involved in student selection and whether they have any real influence on recruitment decisions.\ud \ud Method\ud This co‐produced study took place in an English university. A qualitative, semi‐structured interviewing approach was undertaken with 12 staff across social work, nursing, occupational therapy, physiotherapy, paramedicine and physician associate disciplines. Thematic analysis was employed independently with both researchers agreeing resultant themes.\ud \ud Findings\ud A range of recruitment activities which included SUACs were found, evidencing both full and partial involvement in decision making. Nine themes emerged—The quality of SUACs' inclusion; Understanding reasons for including SUACs; SUACs being more knowledgeable than academic staff; SUACs influencing final decisions; The high expectations of candidates by SUACs; SUACs' need for training; Marketization and scepticism; and Logistics and the presumption of ableism.\ud \ud Conclusions\ud Transparent protocols are essential if SUACs are to be equitably included in student recruitment processes. A shared model of SUACs' inclusion should be attainable across disciplines, even if the ‘nuts and bolts’ of recruitment processes vary.\ud \ud Patient or Public Contribution\ud This work was co‐produced with a SUACs' group from conception and design through to fieldwork and write‐up.

Background Timeliness is viewed as a key feature of health‐care quality. Internationally, this is challenging. In England, cancer waiting time targets are currently not being met. For example, between 2015 and 2018 only 71% of patients with upper gastrointestinal (UGI) cancer started treatment within the recommended 62 days of referral. Objective We explored patients’ experiences to identify areas for service improvement. Design Semi‐structured interviews were conducted. Setting and participants Twenty patients who were referred through the urgent (two‐week) GP referral route and were within six months of receiving first treatment were recruited. Data analysis Data from the interviews were analysed thematically. Results Four themes were developed: organization of care; diagnosis; support; and views and expectations of the NHS. Patients described cross‐cutting issues such as complex and varied pathways and uncertainty about what would happen next. They felt daunted by the intensity and speed of investigations. They were presented with a recommended course of action rather than options and had little involvement in decision making. They were grateful for care, reluctant to complain and resigned to the status quo. Discussion and conclusions In order to meet patient needs, the NHS needs to improve communication and streamline pathways. Future cancer pathways also need to be designed to support shared decision making, be truly person‐centred and informed by patient experience.

Background: Longitudinal studies assessing depression and anxiety effects on cognition in multiple sclerosis (MS) are limited. Objective: We tested whether within-person fluctuations in symptoms of depression or anxiety over time affect cognition in persons with MS, inflammatory bowel disease (IBD), rheumatoid arthritis (RA), and a lifetime history of depression/anxiety disorders (DEP/ANX) but without an immune-mediated inflammatory diseases (IMID). Methods: We followed participants (MS: 255, IBD: 247, RA: 154, and DEP/ANX: 306) for 3 years. Annually, they completed the hospital anxiety and depression scale (HADS) and cognitive tests including the symbol digit modalities test (SDMT). We evaluated associations of elevated symptoms (scores ⩾ 11) of anxiety (HADS-A) and depression (HADS-D) with SDMT z-scores using multivariable linear models—estimating between-person and within-person effects. Results: Participants with MS performed worse on the SDMT than participants in the DEP/ANX cohort (β = −0.68; 95% CI: −0.88, −0.48). Participants with elevated HADS-A scores performed worse on the SDMT than those without elevated scores (β = −0.43; 95% CI: −0.65, −0.21), particularly those with RA. Time-varying within-person elevations in depressive symptoms were associated with worse SDMT performance (β = −0.12; 95% CI: −0.21, −0.021). Conclusions: Across persons, elevated symptoms of anxiety adversely affected information processing. Elevated symptoms of depression within-persons over time were associated with declines in information processing speed.

Objective This study explored the perceptions, needs and preferences for chronic disease self‐ management (SM) and SM support among men experiencing homelessness. Design A qualitative interpretive approach was used. Eighteen semi‐structured interviews were conducted with 18 homeless men with a chronic disease at an emergency overnight shelter of Welcome Hall Mission (WHM) in Montreal, Quebec. Interviews were audio‐recorded, transcribed verbatim and thematically analysed. Results The majority of participants perceived SM as important, described confidence to perform medical SM behaviours, and creatively adapted their SM behaviours to homelessness. Emotional SM was described as most challenging, as it was intertwined with the experience of homelessness. Three vulnerable groups were identified: (a) those with no social networks, (b) severe physical symptoms and/or (c) co‐morbid mental illness. The preferred mode of delivery for SM support was through consistent contacts with health‐care providers (HCPs) and peer‐support initiatives. Discussion and Conclusions Despite competing demands to fulfill basic needs, participants valued chronic disease SM and SM support. However, SM support must address complex challenges relating to homelessness including emotional SM, multiple vulnerabilities and barriers to forming relationships with HCPs.

Background Tuberculosis (TB) elimination strategies in Australia require a focus on groups who are at highest risk of TB infection, such as immigrants from high‐burden settings. Understanding attitudes to different strategies for latent TB infection (LTBI) screening and treatment is an important element of justifiable elimination strategies. Method Two community panels were conducted in Melbourne with members of the Vietnamese (n = 11), Sudanese and South Sudanese communities (n = 9). Panellists were provided with expert information about LTBI and different screening and health communication strategies, then deliberated on how best to pursue TB elimination in Australia. Findings Both panels unanimously preferred LTBI screening to occur pre‐migration rather than in Australia. Participants were concerned that post‐migration screening would reach fewer migrants, noted that conducting LTBI screening in Australia could stigmatize participants and that poor awareness of LTBI would hamper participation. If targeted screening was to occur in Australia, the Vietnamese panel preferred ‘place‐based’ communication strategies, whereas the Sudanese and South Sudanese panel emphasized that community leaders should lead communication strategies to minimize stigma. Both groups emphasized the importance of maintaining community trust in Australian health service providers, and the need to ensure targeting did not undermine this trust. Conclusion Pre‐migration screening was preferred. If post‐migration screening is necessary, the potential for stigma should be reduced, benefit and risk profile clearly explained and culturally appropriate communication strategies employed. Cultural attitudes to health providers, personal health management and broader social vulnerabilities of targeted groups need to be considered in the design of screening programs.

Background Engaging youth in research provides substantial benefits to research about youth‐related needs, concerns and interventions. However, researchers require training and capacity development to work in this manner. Methods A capacity‐building intervention, INNOVATE Research, was co‐designed with youth and adult researchers and delivered to researchers in three major academic research institutions across Canada. Fifty‐seven attendees participated in this research project evaluating youth engagement practices, attitudes, perceived barriers, and perceived capacity development needs before attending the intervention and six months later. Results The intervention attracted researchers across various career levels, roles and disciplines. Participants were highly satisfied with the workshop activities. Follow‐up assessments revealed significant increases in self‐efficacy six months after the workshop (P = .035). Among possible barriers to youth engagement, four barriers significantly declined at follow‐up. The barriers that decreased were largely related to practical knowledge about how to engage youth in research. Significantly more participants had integrated youth engagement into their teaching activities six months after the workshop compared to those who were doing so before the workshop (P = .007). A large proportion (71.9%) of participants expressed the need for a strengthened network of youth‐engaged researchers; other future capacity‐building approaches were also endorsed. Conclusions The INNOVATE Research project provided improvements in youth engagement attitudes and practices among researchers, while lifting barriers. Future capacity‐building work should continue to enhance the capacity of researchers to engage youth in research. Researchers notably pointed to the need to establish a network of youth‐engaged researchers to provide ongoing, sustainable gains in youth engagement.

Background Measurement of physicians' competence in shared decision making (SDM) remains challenging with frequent disagreement between assessment methods. Objective To conceptualize and measure physicians' SDM competence as an organized network of behavioural skills and to determine whether processing patient-reported data according to this model can be used to predict observer-rated competence. Design Secondary analysis of an observational study. Setting and participants Primary and specialty outpatient care physicians and consecutively recruited adult patients with a chronic condition who faced a treatment decision with multiple acceptable choices. Measures Network parameters constructed from patients' assessment of physicians' SDM skills as measured by the 9-item Shared Decision Making Questionnaire (SDM-Q-9) and observer-rated SDM competence of physicians measured by three widely used observer-rated instruments. Results 29 physicians (12 female, 17 male; mean age 50.3 years) recruited 310 patients (59.4% female, 40.6% male; mean age 54.0 years) facing a decision mainly regarding type 2 diabetes (36.4%), chronic back pain (32.8%) or depressive disorder (26.8%). Although most investigated skills were interrelated, elicitation of the patient's treatment preferences showed the strongest associations with the other skills. Network parameters of this skill were also decisive in predicting observer-rated competence. Correlation between predicted competence scores and observer-rated measurements ranged from 0.710 to 0.785. Conclusions Conceptualizing physicians' SDM competence as a network of interacting skills enables the measurement of observer-rated competence using patient-reported data. In addition to theoretical implications for defining and training medical competences, the findings open a new way to measure physicians' SDM competence under routine conditions.

Background Relapse is high in lifestyle interventions involving behavioural change and weight loss maintenance. The purpose of lifestyle self‐management interventions offered at Healthy Life Centres (HLCs) is to empower the participants, leading to self‐management and improved health. Exploring beneficial self‐management support and user involvement in HLCs is critical for quality, improving effectiveness and guiding approaches to lifestyle change support in overweight and obesity. Objective The aim of this study was to explore how persons afflicted by overweight or obesity attending lifestyle interventions in Norwegian HLCs experience beneficial self‐management support and user involvement. Method Semi‐structured in‐depth interviews were conducted with 13 service users (5 men and 8 women). Data were analysed using qualitative content analysis. Results One main theme was identified: regaining self‐esteem and dignity through active involvement and long‐term self‐worth support in partnership with others. This main theme comprised four themes: (a) self‐efficacy through active involvement and better perceived health, (b) valued through health‐care professionals (HPs) acknowledgement, equality and individualized support, (c) increased motivation and self‐belief through fellowship and peer support; and (d) maintenance of lifestyle change through accessibility and long‐term support. Conclusion Service users’ active involvement, acknowledgement and long‐term self‐worth support from HPs and peers seem to support self‐management and user involvement and may be some of the successful ingredients to lifestyle change. However, prolonged follow‐up support is needed. A collectivistic and long‐term perspective can integrate the importance of significant others and shared responsibility.

Background Person-centred care (PCC) has been suggested as a potential means to improve the care of patients with chronic and long-term disorders. In this regard, a model for PCC was developed by the University of Gothenburg Centre for Person-Centred Care (GPCC). Objective The present study aimed to explore the theoretical frameworks, designs, contexts and intervention characteristics in the first 27 interventional studies conducted based on the ethics for person-centredness provided by the GPCC. Design Cross-sectional study. Setting and participants A questionnaire to the principal investigators of the 27 intervention studies financed by the GPCC and conducted between 2010 and 2016. Main outcome measures Theoretical frameworks, contexts of studies, person-centred ethic, and outcome measures. Results Most of the interventions were based on the same ethical assumptions for person-centredness but theories and models in applying the interventions differed. All studies were controlled; 12 randomized and 15 quasi-experimental. Hospital in- and outpatient and primary care settings were represented and the outcome measures were related to the specific theories used. A complexity in designing, introducing and evaluating PCC interventions was evident. Conclusion The frameworks, designs and interventions in the studies were in line with the established ethical basis of PCC, whereas outcome measures varied widely. Consensus discussions among researchers in the field are needed to make comparisons between studies feasible. Patient or public contributions Patients or the public made no direct contributions, although most of the studied projects included such initiatives.

Background Stem cell therapy is a novel treatment option for people living with osteoarthritis. Research investigating stem cell therapy for this debilitating condition has predominantly involved the pathogenesis of the cells and efficacy of the treatment. There is little understanding of patients' expectations and experiences of stem cell therapy treatment. Objective To explore the expectations and experiences of people undergoing stem cell therapy for the treatment of knee osteoarthritis. Design An exploratory, descriptive, qualitative study using semi-structured interviews was conducted. Setting and participants Participants were recruited into two groups: (a) Expectations Group (n = 15); the expectations of stem cell treatment were explored with participants that were yet to commence stem cell therapy. (b) Experiences Group (n = 15); the experiences of stem cell therapy were explored with participants 12 months after their initial stem cell treatment. Transcripts were analysed using thematic analysis to identify themes in both groups. Results Themes for the Expectations Group were active involvement in the treatment; treatment will improve symptoms; and benefits of treatment outweigh the risks. Themes for the Experiences Group were symptoms of treatment; satisfaction with treatment; and anticipation of further improvement. Discussion and conclusions The findings are the first qualitative study to represent patients' perspective on expectations and experiences of stem cell therapy for knee osteoarthritis. They provide insight into the potential areas for improvement within this field to aid patients' preparation and approach to the treatment, promoting patient-centred care.

Background Patients are often not actively engaged in medical encounters. Short interventions like Ask 3 Questions (Ask3Q) can increase patient participation in decision-making. Up to now, Ask3Q was not available in German. Objective To translate Ask3Q and evaluate its acceptability and feasibility. Methods We translated and adapted several English versions of Ask3Q using a team translation protocol and cognitive interviews. Acceptability and feasibility of the final German Ask3Q version were assessed via focus groups and interviews with patients and healthcare professionals (HCPs). Data were analysed via qualitative content analysis. Results Translation and adaptation were successful. Participants of focus groups and interviews perceived Ask3Q as a tool to empower patients to ask more questions. Moreover, it was seen as a guideline for physicians not to forget conveying important information. Several characteristics of patients, HCPs, the clinical setting and the intervention were identified as facilitators and barriers for an effective implementation of Ask3Q. Conclusion We provide the German version of Ask3Q. According to participants, implementation of Ask3Q in the German healthcare system is feasible. Future studies should evaluate if positive effects of Ask3Q can be replicated for patient participation and communication behaviour of HCPs in Germany.

Suicide by pesticide self-poisoning is a major public health challenge in low- and middle-income countries. While effectiveness studies are required to test alternative prevention approaches, economic evidence is lacking to inform decision-making in research priority setting. Therefore, this study aimed to estimate the costs of a shop-based gatekeeper training programme for pesticide vendors seeking to prevent pesticide self-poisoning in rural Sri Lanka and assess its potential for cost-effectiveness.Ex-ante cost and cost-effectiveness threshold (CET) analyses were performed from a governmental perspective based on a three-year analytic horizon, using 'no programme' as a comparator. A programme model targeting all 535 pesticide shops in the North Central Province and border areas was applied. Total programme costs (TPC) were estimated in 2019 USD using an ingredients approach and 3% annual discounting. The Sri Lankan gross domestic product per capita and life years saved were used as CET and effectiveness measure, respectively. Sensitivity analyses were performed.TPC were estimated at 31 603.03 USD. TPC were sensitive to cost changes of training material and equipment and the programme lifetime. The programme needs to prevent an estimated 0.23 fatal pesticide self-poisoning cases over three years to be considered cost-effective. In the sensitivity analyses, the highest number of fatal cases needed to be prevented to obtain cost-effectiveness was 4.55 over three years.From an economic perspective, the programme has a very high potential to be cost-effective. Research assessing its effectiveness should therefore be completed, and research analysing its transferability to other settings prioritised.Le suicide par auto-intoxication par les pesticides est un défi majeur de santé publique dans les pays à revenu faible ou intermédiaire. Bien que des études d'efficacité soient nécessaires pour tester d'autres approches de prévention, les données économiques manquent pour informer la prise de décision dans les priorités de recherche. Par conséquent, cette étude visait à estimer les coûts d'un programme de formation des vendeurs dans les magasins de pesticides visant à prévenir l'auto-intoxication par les pesticides dans les régions rurales du Sri Lanka et à évaluer son potentiel de rentabilité. MÉTHODES: Les analyses ex-ante des coûts et des seuils de rentabilité (SR) ont été réalisées dans une perspective gouvernementale sur la base d'un horizon analytique de trois ans, en utilisant «l’absence de programme» comme comparateur. Un modèle de programme ciblant les 535 magasins de pesticides de la province du Centre-Nord et des zones frontalières a été appliqué. Les coûts totaux du programme (CTP) ont été estimés en USD 2019 en utilisant une approche d’ingrédients et une remise annuelle de 3%. Le produit intérieur brut sri-lankais par habitant et les années de vie sauvées ont été utilisés comme SR et mesure d'efficacité, respectivement. Des analyses de sensibilité ont été effectuées. RÉSULTATS: le CTP a été estimé à 31.603,03 USD. Le CTP était sensible aux changements de coût du matériel et de l'équipement de formation et de la durée de vie du programme. Le programme devrait prévenir environ 0,23 cas d'auto-intoxication mortelle par des pesticide sur trois ans pour être considéré comme rentable. Dans les analyses de sensibilité, le plus grand nombre de cas mortels à prévenir pour obtenir une rentabilité était de 4,55 sur trois ans.D'un point de vue économique, le programme a un potentiel très élevé pour être rentable. La recherche évaluant son efficacité doit donc être complétée et la recherche analysant sa transférabilité à d'autres contextes doit être priorisée.

Background Best‐practice guidelines recommend that appropriate support be provided to public contributors to facilitate their involvement in research. One form of support is research awareness training. Older people with dementia and care partners were involved in four Research User Groups (RUGs) in the UK, France, Cyprus and Greece. We delivered research awareness training (RAT) to the RUGs. The aim of this study was to evaluate the acceptability and perceived outcomes of the training from the perspective of RUG members. Methods At the end of each research training session, participants completed the Training Acceptability Rating Scale‐section 2, which records the respondent's impressions of the training process and the outcomes of training. Participants were also invited to take part in semi‐structured interviews at the end of the programme. Results Thirty‐four RUG members completed the TARS‐section 2 with 23 completing semi‐structured interviews. Over two‐thirds (67%) of participants rated their overall satisfaction with the RAT ‘a great deal’. Qualitative responses indicated that participants found group work to be beneficial for learning, the structure of training activities and topics covered appropriate. The type and format of the training materials were viewed as helpful, and they valued the new knowledge gained. Conclusions The training contents were applicable, useful and relevant to the participants’ role within the research. We highlight the importance of facilitating participation by (a) fostering awareness of relevant research issues and (b) tailoring delivery of training according to the needs of the participants.

Objective While public reporting of hospital‐based performance measurement is commonplace, it has lagged in the primary care sector, especially in Canada. Despite the increasing recognition of patients as active partners in the health‐care system, little is known about what information about primary care performance is relevant to the Canadian public. We explored patient perspectives and priorities for the public reporting of primary care performance measures. Methods We conducted six deliberative dialogue sessions across three Canadian provinces (British Columbia, Ontario, Nova Scotia). Participants were asked to rank and discuss the importance of collecting and reporting on specific dimensions and indicators of primary care performance. We conducted a thematic analysis of the data. Results Fifty‐six patients participated in the dialogue sessions. Measures of access to primary care providers, communication with providers and continuity of information across all providers involved in a patient's care were identified as the highest priority indicators of primary care performance from a patient perspective. Several common measures of quality of care, such as rates of cancer screening, were viewed as too patient dependent to be used to evaluate the health system or primary care provider's performance. Conclusions Our findings suggest that public reporting aimed at patient audiences should focus on a nuanced measure of access, incorporation of context reported alongside measurement that is for public audiences, clear reporting on provider communication and a measure of information continuity. Participants highlighted the importance the public places on their providers staying up to date with advances in care.

Background Patient and family engagement in health care has emerged as a critical priority. Understanding engagement, from the perspective of the patient and family member, coupled with an awareness of how patient and family members are motivated to be involved, is an important component in increasing the effectiveness of patient engagement initiatives. The purpose of this research was to co‐design a patient and family engagement framework. Methods Workshops were held to provide additional context to the findings from a survey. Participants were recruited using a convenience sampling strategy. Workshop data collected were analysed using a modified constant comparative technique. The core research team participated in a workshop to review the findings from multiple inputs to inform the final framework and participated in a face validity exercise to determine that the components of the framework measured what they were intended to measure. Results The framework is organized into three phases of engagement: why I got involved; why I continue to be involved; and what I need to strengthen my involvement. The final framework describes seven motivations and 24 statements, arranged by the three phases of engagement. Conclusion The results of this research describe the motivations of patient and family members who are involved with health systems in various roles including as patient advisors. A deeper knowledge of patient and family motivations will not only create meaningful engagement opportunities but will also enable health organizations to gain from the voice and experience of these individuals, thereby enhancing the quality and sustainability of patient and family involvement.

Background Therapeutic interventions for people with inflammatory arthritis (IA) increasingly involve multidisciplinary teams and strive to foster patient-centred care and shared decision making. Participation in health-care decisions requires patients to assert themselves and negotiate power in encounters with clinicians; however, clinical contexts often afford less authority for patients than clinicians. This disadvantage may inhibit patients' involvement in their own health care. Objective To identify communication attributes, IA patients use to influence and negotiate their treatment with members of their health-care network. Method A qualitative social network approach was used to analyse data from a larger study that investigated IA patients' overall experiences of multidisciplinary care. Fourteen patients with IA attended individual semi-structured interviews. Researchers used thematic analysis to identify patterns of assertiveness and influence in the data. Results Participants experienced loss of identity, control and agency in addition to the physical symptoms of IA. However, they had a sense of personal responsibility for managing their health care. Perceptions of health-care team support enhanced patients' influence in treatment negotiations. Notably, there appeared to be an underlying tension between being empowered or disempowered. Discussion and conclusions The findings have significant implications for treatment decision communication approaches to IA care. A social network perspective may provide a pathway for clinicians to better understand the complexities of communication with their patients. This approach may reduce unequal power dynamics that occur within clinician/patient interactions and afford people with IA agency, control and affirmation of identity within their health-care network.