Generalist, specialist, or expert in palliative care? A cross-sectional open survey on healthcare professionals' self-description.

BACKGROUND: In the Netherlands, palliative care is provided by generalist healthcare professionals (HCPs) if possible and by palliative care specialists if necessary. However, it still needs to be clarified what specialist expertise entails, what specialized care consists of, and which training or work experience is needed to become a palliative care specialist. In addition to generalists and specialists, 'experts' in palliative care are recognized within the nursing and medical professions, but it is unclear how these three roles relate. This study aims to explore how HCPs working in palliative care describe themselves in terms of generalist, specialist, and expert and how this self-description is related to their work experience and education. METHODS: A cross-sectional open online survey with both pre-structured and open-ended questions among HCPs who provide palliative care. Analyses were done using descriptive statistics and by deductive thematic coding of open-ended questions. RESULTS: Eight hundred fifty-four HCPs filled out the survey; 74% received additional training, and 79% had more than five years of working experience in palliative care. Based on working experience, 17% describe themselves as a generalist, 34% as a specialist, and 44% as an expert. Almost three out of four HCPs attributed their level of expertise on both their education and their working experience. Self-described specialists/experts had more working experience in palliative care, often had additional training, attended to more patients with palliative care needs, and were more often physicians as compared to generalists. A deductive analysis of the open questions revealed the similarities and distinctions between the roles of a specialist and an expert. Seventy-six percent of the respondents mentioned the importance of having both specialists and experts and wished more clarity about what defines a specialist or an expert, how to become one, and when you need them. In practice, both roles were used interchangeably. Competencies for the specialist/expert role consist of consulting, leadership, and understanding the importance of collaboration. CONCLUSIONS: Although the grounds on which HCPs describe themselves as generalist, specialist, or experts differ, HCPs who describe themselves as specialists or experts mostly do so based on both their post-graduate education and their work experience. HCPs find it important to have specialists and experts in palliative care in addition to generalists and indicate more clarity about (the requirements for) these three roles is needed.

Intention of healthcare providers to use video-communication in terminal care: a cross-sectional study.

BACKGROUND: Interdisciplinary collaboration between healthcare providers with regard to consultation, transfer and advice in terminal care is both important and challenging. The use of video communication in terminal care is low while in first-line healthcare it has the potential to improve quality of care, as it allows healthcare providers to assess the clinical situation in real time and determine collectively what care is needed. The aim of the present study is to explore the intention to use video communication by healthcare providers in interprofessional terminal care and predictors herein. METHODS: In this cross-sectional study, an online survey was used to explore the intention to use video communication. The survey was sent to first-line healthcare providers involved in terminal care (at home, in hospices and/ or nursing homes) and consisted of 39 questions regarding demographics, experience with video communication and constructs of intention to use (i.e. Outcome expectancy, Effort expectancy, Attitude, Social influence, Facilitating conditions, Anxiety, Self-efficacy and Personal innovativeness) based on the Unified Theory of Acceptance and Use of Technology and Diffusion of Innovation Theory. Descriptive statistics were used to analyze demographics and experiences with video communication. A multiple linear regression analysis was performed to give insight in the intention to use video communication and predictors herein. RESULTS: 90 respondents were included in the analysis.65 (72%) respondents had experience with video communication within their profession, although only 15 respondents (17%) used it in terminal care. In general, healthcare providers intended to use video communication in terminal care (Mean (M) = 3.6; Standard Deviation (SD) = .88). The regression model was significant (F = 9.809, p-value<.001) and explained 44% of the variance in intention to use video communication, with 'Outcome expectancy' (beta .420, p < .001) and 'Social influence' (beta .266, p = .004) as significant predictors. CONCLUSIONS: Healthcare providers have in general the intention to use video communication in interprofessional terminal care. However, their actual use in terminal care is low. 'Outcome expectancy' and 'Social influence' seem to be important predictors for intention to use video communication. This implicates the importance of informing healthcare providers, and their colleagues and significant others, about the usefulness and efficiency of video communication.

Geriatric Falls: A Registry-Based Study in the Netherlands.

BACKGROUND: Falls in people 65 years and older evaluated in the emergency department are increasing. Of all unintentional injury-related deaths among older people, 55% are due to falls. The impact of falls, especially concerning Dutch older people with the highest proportion of living independently worldwide, is unclear. OBJECTIVE: To identify the influence of age, gender, health conditions, and type of fall on the severity of injury, hospital length of stay, mortality, and discharge destination. METHODS: A total number of 6,084 patients from a comprehensive regional trauma care system, 65 years and older and hospitalized after a fall, were included. Groups were compared for patient-related factors and multivariable logistic regression analysis to explore the consequences. RESULTS: Mean age was 82 years (SD = 8.3), and 70% were female. Most falls (66.4%) were due to "slipping and tripping" or "falls on the same level," 57.4% had Injury Severity Scores between 9 and 12, and 43.3% were discharged home. Higher age and type of fall increased the likelihood of severe injuries. Men experienced shorter hospital stays than women and were less frequently discharged home. Mortality was higher in males (10.8%) than in females (6.7%) and increased with the American Society of Anesthesiologists scores for preexisting health conditions. CONCLUSION: Advanced age, gender, type of fall, and prior health status play a significant role in the severity of injuries, length of hospital stay, 30-day mortality, and higher discharge destination to care homes in older people hospitalized after a fall.

Poor understanding of allergen labelling by allergic and non-allergic consumers.

BACKGROUND: Understanding consumers' interpretation of allergy information is crucial for effective food safety policies. We evaluated consumer understanding of allergy information on foods in controlled, experimental studies. METHOD: Using 18 packaged foods, we evaluated consumer understanding of information about allergens in two experiments: First, a comparison of foods with no stated allergen versus allergen as a stated ingredient versus a precautionary allergen label (PAL); second, a comparison of three common variants of PAL. In each experiment, consumers with and without self-reported food allergy were asked to estimate the risk of allergic reaction and to rate the comprehensibility of the allergen information. In the second experiment, consumers were also asked which form of PAL they preferred. RESULTS: Risk of reaction was assessed as high and low for foods with the allergen stated as ingredient, or without any mention of allergen. However, risk assessment for PAL varied and was judged as higher by non-allergic than allergic participants (82% vs. 58%, p < .001). Understanding of risk associated with PAL also varied by health literacy (p < .001). Both allergic and non-allergic consumers judged all forms of allergy information to be unclear, especially products with no allergy information for non-allergic consumers. Products with a 'Produced in a Factory' PAL were perceived as less risky than 'May contain' or 'Traces of' PALs (p < .001), less than 40% of participants judged PAL information to be comprehensible, and participants preferred 'May contain' over the other PALs. CONCLUSION: Both allergic and non-allergic consumers find allergen information difficult to interpret on packaged foods and misunderstand PAL, incorrectly distinguishing different risk levels for different PAL wording. Clearer allergy information guidelines are called for, and the use of only one PAL wording is recommended.

Predicting food allergy: The value of patient history reinforced.

BACKGROUND: EAACI guidelines emphasize the importance of patient history in diagnosing food allergy (FA) and the need for studies investigating its value using standardized allergy-focused questionnaires. OBJECTIVE: To determine the contribution of reaction characteristics, allergic comorbidities and demographics to prediction of FA in individuals experiencing food-related adverse reactions. METHODS: Adult and school-age participants in the standardized EuroPrevall population surveys, with self-reported FA, were included. Penalized multivariable regression was used to assess the association of patient history determinants with "probable" FA, defined as a food-specific case history supported by relevant IgE sensitization. RESULTS: In adults (N = 844), reproducibility of reaction (OR 1.35 [95% CI 1.29-1.41]), oral allergy symptoms (OAS) (4.46 [4.19-4.75]), allergic rhinitis (AR) comorbidity (2.82 [2.68-2.95]), asthma comorbidity (1.38 [1.30-1.46]) and male sex (1.50 [1.41-1.59]) were positively associated with probable FA. Gastrointestinal symptoms (0.88 [0.85-0.91]) made probable FA less likely. The AUC of a model combining all selected predictors was 0.85 after cross-validation. In children (N = 670), OAS (2.26 [2.09-2.44]) and AR comorbidity (1.47 [CI 1.39-1.55]) contributed most to prediction of probable FA, with a combined cross-validation-based AUC of 0.73. When focusing on plant foods, the dominant source of FA in adults, the pediatric model also included gastrointestinal symptoms (inverse association), and the AUC increased to 0.81. CONCLUSIONS: In both adults and school-age children from the general population, reporting of OAS and of AR comorbidity appear to be the strongest predictors of probable FA. Patient history particularly allows for good discrimination between presence and absence of probable plant FA.

Reintroduction failure after negative food challenges in adults is common and mainly due to atypical symptoms.

BACKGROUND: Reintroduction of a food after negative food challenge (FC) faces many obstacles. There are no studies available about this subject in adults. OBJECTIVE: To investigate the frequency, reasons and risk factors of reintroduction failure in adults. METHODS: In this prospective study, adult patients received standardized follow-up care after negative FCs including a reintroduction scheme and supportive telephone consultations. Data were collected by telephone interview (2 weeks after FC) and questionnaires (at baseline and 6 months after FC(s)): food habits questionnaire, State-Trait Anxiety Inventory, Food Allergy Quality of Life Questionnaire-Adult Form and Food Allergy Independent Measure. Frequency and reasons of reintroduction failure were analysed using descriptive statistics and risk factors with univariate analyses. RESULTS: Eighty patients were included with, in total, 113 negative FCs. Reintroduction failed on short-term (2 weeks after FC) in 20% (95% CI: 13%-28%). Common reasons were symptoms upon ingestion during the reintroduction scheme (50%) and no need to eat the food (23%). On the long-term (5-12 months after FC(s)), reintroduction failure increased to 40% (95% CI: 28%-53%). Common reasons were atypical symptoms after eating the food (59%) and fear for an allergic reaction (24%). Five risk factors for long-term reintroduction failure were found: if culprit food was not one of the 13 EU regulated allergens, reintroduction failure at short-term, atypical symptoms during FC, a lower quality of life and a higher state anxiety. CONCLUSIONS AND CLINICAL RELEVANCE: Reintroduction failure after negative FCs in adults is common, increases over time, and is primarily due to atypical symptoms. This stresses the need for more patient-tailored care before and after negative food challenges.

Response of FcεRI-bearing leucocytes to omalizumab in chronic spontaneous urticaria.

BACKGROUND: The pathogenesis of chronic spontaneous urticaria (CSU) and the mechanism of action of omalizumab in CSU remain unclear. OBJECTIVE: In this study, we assessed the responsiveness and FcεRI expression of various subsets of leucocytes in patients with CSU treated with omalizumab. METHODS: In this prospective cohort study, 30 patients were treated with 6 administrations of 300 mg omalizumab every 4 weeks, followed by a follow-up period of 12 weeks. FcεRI expression and the percentage of basophils, monocytes, and dendritic cell subsets were analysed before and during treatment, and after follow-up. In addition, anti-IgE- and C5a-induced basophil degranulation was measured. The results were correlated with disease activity and response to omalizumab. RESULTS: In addition to a rapid and significant reduction in FcεRI on basophils, we demonstrated a reduction in FcεRI on plasmacytoid dendritic cells during omalizumab treatment, which persisted until 3 months after discontinuation. FcεRI expression on basophils and its reduction did not correlate with the treatment response. Omalizumab led to an increased percentage of basophils in blood but not of the other FcεRI-bearing leucocytes. Basophil responsiveness was differentially affected; anti-IgE-, but not C5a-induced basophil degranulation increased during the treatment. Apart from clinical non-responders showing a stronger increase in anti-IgE-induced basophil degranulation over a period time, no differences were found in omalizumab responders vs non-responders. CONCLUSIONS/CLINICAL RELEVANCE: FcεRI expression on basophils decreased rapidly, while anti-IgE-induced degranulation significantly increased due to omalizumab treatment in patients with CSU, persisting at least for 3 months after stopping the treatment. None of the markers were able to predict the effectiveness of treatment. Whether basophils play a role in omalizumab responsiveness in CSU remains unclear.

The role of mobile health technologies in allergy care: An EAACI position paper.

Mobile health (mHealth) uses mobile communication devices such as smartphones and tablet computers to support and improve health-related services, data and information flow, patient self-management, surveillance, and disease management from the moment of first diagnosis to an optimized treatment. The European Academy of Allergy and Clinical Immunology created a task force to assess the state of the art and future potential of mHealth in allergology. The task force endorsed the "Be He@lthy, Be Mobile" WHO initiative and debated the quality, usability, efficiency, advantages, limitations, and risks of mobile solutions for allergic diseases. The results are summarized in this position paper, analyzing also the regulatory background with regard to the "General Data Protection Regulation" and Medical Directives of the European Community. The task force assessed the design, user engagement, content, potential of inducing behavioral change, credibility/accountability, and privacy policies of mHealth products. The perspectives of healthcare professionals and allergic patients are discussed, underlining the need of thorough investigation for an effective design of mHealth technologies as auxiliary tools to improve quality of care. Within the context of precision medicine, these could facilitate the change in perspective from clinician- to patient-centered care. The current and future potential of mHealth is then examined for specific areas of allergology, including allergic rhinitis, aerobiology, allergen immunotherapy, asthma, dermatological diseases, food allergies, anaphylaxis, insect venom, and drug allergy. The impact of mobile technologies and associated big data sets are outlined. Facts and recommendations for future mHealth initiatives within EAACI are listed.

Diagnostic accuracy of fetal MRI to detect cleft palate: a meta-analysis.

This systematic review aims to determine the diagnostic accuracy of fetal MRI for detecting cleft palate in fetuses at risk for orofacial clefts. Pubmed, Embase, and CINAHL were searched systematically. A diagnostic study was included if it performed MRI (index test) and postnatal examination (reference test) in fetuses at risk for orofacial clefts. Methodological quality was assessed using the QUADAS-2. A meta-analysis was performed with a random-effects model, calculating the pooled sensitivity, specificity, and area under the curve. The search resulted in eight studies (334 fetuses) to be included: four prospective and four retrospective studies. The applicability concern was low. There was, however, a risk of selection and information bias. All studies showed that MRI well predicted the chance of cleft palate. The sensitivity results were homogeneous, but heterogeneity was assumed regarding the specificity estimate (Cochrane's Q test: p = 0.00). The pooled sensitivity was 0.97 (95% CI 0.93-0.99); the pooled specificity was 0.94 (0.89-0.97). The area under the curve was 0.98 (95% CI 0.98-0.99).Conclusion: This meta-analysis shows that MRI has an excellent sensitivity and good to excellent specificity for diagnosing cleft palate in fetuses at risk for orofacial clefts. Future research should assess applicability for clinical care.What is Known:• Using ultrasound for prenatal detection of cleft palate leads to misdiagnosis frequently.• MRI could potentially improve the prenatal detection rate of cleft palate.What is New:• Eight studies describe the diagnostic accuracy of MRI for detecting cleft palate.• Combined results show excellent sensitivity and good to excellent specificity.

Real-Time Access to Electronic Health Record via a Patient Portal: Is it Harmful? A Retrospective Observational Study.

BACKGROUND: The rapid implementation of patient portals, through which patients can view their electronic health record, creates possibilities for information exchange and communication between patients and health care professionals. However, real-time disclosure of test results and clinical reports poses a source of concern. OBJECTIVE: This study aimed to examine negative experiences resulting from real-time disclosure of medical information through a patient portal. METHODS: Data were collected over a 2-year period in 4 datasets consisting of incidents reported by health care professionals, complaints of patients, patient issues at a portal helpdesk, and a survey among health care professionals. Incidents, complaints, issues, and answers on the survey were counted and analyzed through an iterative process of coding. RESULTS: Within the chosen time frame of 2 years, on average, 7978 patients per month logged into the portal at least once. The amount of negative incidents and complaints was limited. A total of 6 incidents, 4 complaints, and 2506 issues at the helpdesk concerning the patient portal were reported, of which only 2, 1, and 3 cases of these respective databases concerned real-time disclosure of medical information through the patient portal. Moreover, 32 out of 216 health care professionals reported patients that had negative experiences with real-time disclosure. Most negative consequences concerned confused and anxious patients when confronted with unexpected or incomprehensible results. CONCLUSIONS: Real-time access through a patient portal did not substantially result in negative consequences. The negative consequences that did occur can be mitigated by adequate preparation and instruction of patients concerning the various functionalities of the patient portal, real-time disclosure of test results in particular, and can also be managed through educating health care professionals about the patient portal and making adjustments in the daily practice of health care professionals.

The role of the nurse in the care and management of patients with atopic dermatitis.

BACKGROUND: The purpose of this paper is to provide an overview of key aspects of specialised dermatology nursing practice in the management of patients with moderate to severe atopic dermatitis. The role of dermatology nurse specialists in supporting patients and promoting disease understanding, education and treatment adherence continues to evolve. As features of specialised nursing care can also inform other nursing staff in a wide range of care settings, an overview of key components is examined. Observations presented are from a pan-European perspective and represent the collected view of a group of dermatology nurse specialists, dermatologists and patient advocates following two round-table discussions. MAIN BODY: Atopic dermatitis is a common, chronic, inflammatory disease characterised by erythematous/scaling skin lesions, with often intense pruritus. Disease course is cyclic with periodic disease flares of varying intensity, presenting management challenges to patients and families. Dermatology nurse specialists play a key role in providing education and substantial patient support to improve treatment outcomes and quality of life to patients and their family, delivered within a multidisciplinary team framework. Nurse-led education and 'eczema schools' are of benefit in reducing disease severity and improving quality of life by enhancing self-management, adherence and patient engagement. eHealth tools, such as patient portals or online training platforms, can provide online learning, individualised education, and help to improve engagement. These and other initiatives, such as written action plans, are all essential to improve or maintain treatment adherence, self-management and quality of life. CONCLUSIONS: Dermatology nurse specialists play a central role in the assessment and management of moderate to severe atopic dermatitis patients and families. This places them in an ideal position to build strong and often long-term relationships with patients and parents. Such engagement promotes trust, assists in setting realistic expectations of treatment and outcomes, and enhances self-management and engagement in their own care. Providing emotional support, as well as formal and systematic education (including individualised practical advice) all contribute to improved treatment adherence and can enhance the quality of life of patients and their families throughout the course of this long-term condition.

Potential cofactors in accidental food allergic reactions are frequently present but may not influence severity and occurrence.

BACKGROUND: Cofactors, such as physical exercise and alcohol intake, might be associated with the severity or occurrence of food allergic reactions. OBJECTIVE: To gain insight into the frequency of presence of potential cofactors in accidental food allergic reactions in adults and to what extent these factors influence the severity and occurrence of allergic reactions. METHODS: A prospective cohort study was conducted, with a 1-year follow-up in adult patients with a physician-diagnosed food allergy. Patients were required to fill in a questionnaire after every accidental allergic reactions to food over a 1-year period. The primary outcome measure was the frequency that potential cofactors were present in these allergic reactions. RESULTS: A total of 157 patients were included, of which 46% reported a total of 153 reactions during a 1-year follow-up period. In 74% of the reactions, ≥1 potential cofactor was reported to be present: tiredness (38%), alcohol intake (16%), stress (14%), symptoms of pollinosis (16%), symptoms of asthma (9%), sickness/flu (3%), physical exercise (3%) and use of analgesics (2%). More than one potential cofactor was reported in almost half of all reactions (47%). There was no significant difference in the presence of these factors between mild, moderate and severe reactions (P = 0.522). In the total study population, 9% of the patients used medication that might act as cofactor (antacids, angiotensin receptor blockers [ARBs], beta blockers and angiotensin-converting enzyme inhibitors [ACEIs]) on a daily basis, which however did not influence the occurrence of reactions. Furthermore, 38% daily used allergy-suppressing medication. CONCLUSIONS: Although factors suggested to be cofactors were frequently present during accidental food allergic reactions, we found no evidence for an association between the potential cofactors examined and reaction severity, in a population where most reactions were of mild to moderate severity.

Effects of shared medical appointments compared to individual appointments in children with atopic dermatitis: A pragmatic randomized controlled trial.

BACKGROUND: Atopic dermatitis (AD) needs intensive treatment and has a negative impact on quality of life. Shared medical appointments (SMAs) showed to be effective in clinical outcomes of chronic diseases, but little is known about the effects on children and families. OBJECTIVE: To evaluate the effects of SMAs compared to individual appointments (IA) for children with AD and their parents on coping and clinical outcomes. METHODS: In a pragmatic randomized controlled trial, new patients in UMC Utrecht with AD, younger than 18 years, and their parents were assigned to the SMA group or the IA group using a covariate adaptive randomization method, controlled for age. Before the intervention, 2 months (primary time-point) and 6 months thereafter, we assessed parental emotional coping (primary outcome), quality of life, anxiety about corticosteroids and patient disease activity. Patients, parents and healthcare professionals could not be blinded to group assignment. RESULTS: Of 140 patients, enrolled in the trial, 69 patients were assigned to the SMA and 71 to the IA intervention of whom 114 completed the intervention (SMA: 49; IA: 65). After 2 months, there were no differences between SMAs and IAs in effects on emotional coping: b 0.66, 95% CI -0.7 to 2.03; P = 0.33 (mean difference: 0.30; 95% CI -1.56 to 2.16; N SMA: 11; IA: 24), quality of life, anxiety about corticosteroids and disease activity. From the initial appointment to long-term follow-up, both groups showed substantial improvements, but not significant in disease activity and significant reduction in anxiety about corticosteroids. This study is limited by a low response rate; therefore, linear mixed models and dropout analyses were performed. No serious adverse events were reported. CONCLUSION AND CLINICAL RELEVANCE: For children with AD and their parents, there were no additional benefits of GMAs in parental emotional coping, anxiety about corticosteroids, quality of life and disease activity. TRIAL REGISTRATION: www.ISRCTN.org, ISRCTN08506572.

Economic Burden of Adult Patients with Moderate to Severe Atopic Dermatitis Indicated for Systemic Treatment.

Given the introduction of new therapies targeting specific immune pathways for atopic dermatitis (AD), information on the economic burden of AD patients is needed. Direct costs (medication use and healthcare resource utilization) and costs of productivity loss were studied in 90 adult patients with AD indicated for systemic treatment. Costs were calculated for patients with controlled (Investigator Global Assessment (IGA) 0-2) and uncontrolled (IGA 3-5) disease at inclusion. Mean (95% confidence interval (95% CI)) total direct costs were €5,191 (€4,382-6,019) per patient per year (PPY), €4,401 (€3,695-5,215) for patients with controlled AD vs. €6,993 (€5,552-8,406), mean difference €2,593 (€820-4,282) (p=0.014) for patients with uncontrolled AD. Costs of productivity loss were €10,040 (€6,260-14,012) PPY for the total group, €6,886 (€4,188-10,129) PPY for patients with controlled AD vs. €13,702 (€6,124-22,996) for patients with uncontrolled AD, mean difference €6,816 (-€1,638-16,677; p=0.148). Total costs (direct costs+costs of productivity loss) were €15,231 (€11,487-19,455) PPY for the total group, €11,287 (€7,974-15,436) for patients with controlled AD vs. €20,695 (€14,068-34,564), mean difference €9,408 (-€119-19,964) (p=0.077) for patients with uncontrolled AD. Patients with AD using systemic immunosuppressive treatment incur considerable direct costs and costs of productivity loss.

Dupilumab Versus Cyclosporine for the Treatment of Moderate-to-Severe Atopic Dermatitis in Adults: Indirect Comparison Using the Eczema Area and Severity Index.

Dupilumab is approved for uncontrolled moderate-to-severe atopic dermatitis (AD); cyclosporine is approved for severe AD for ≤ 1 year. The efficacy/effectiveness of these treat-ments was compared indirectly. Regression models used pooled patient-level data to estimate response (Eczema Area and Severity Index (EASI) EASI-50/EASI-75 at weeks 12-16 and 24-30) to dupilumab 300 mg every 2 weeks (CHRONOS [NCT02260986]) or cyclosporine (University Medical Center). Models were adjusted for sex, baseline EASI, and thymus and activation-regulated chemokine level. A total of 106 patients received dupilumab (+ topical cortico-steroids; + TCS), and 57 received cyclosporine (+ TCS). Among University Medical Center patients, estimated EASI-50 responders were, dupilumab vs. cyclosporine, 91% vs. 77% (p = 0.038; weeks 12-16), and 96% vs. 67% (p < 0.0001; weeks 24-30); EASI-75 responders were 78% vs. 56% (p = 0.016; weeks 12-16) and 80% vs. 47% (p <0.001; weeks 24-30). Among CHRONOS patients, estimated EASI-50 responders were 90% vs. 74% (p <0.038; weeks 12-16) and 92% vs. 53% (p < 0.0001; weeks 24-30); EASI-75 responders were 75% vs. 52% (p = 0.016; weeks 12-16) and 74% vs. 40% (p <0.001; weeks 24-30), respectively. These results suggest a higher relative efficacy of dupilumab vs. cyclosporine.

Accidental food allergy reactions: Products and undeclared ingredients.

BACKGROUND: Accidental allergic reactions to food are frequent and can be severe and even fatal. OBJECTIVE: We sought to analyze the culprit food products and levels of unexpected allergens in accidental reactions. METHODS: A prospective cohort study was conducted in adults (n = 157) with a physician-confirmed diagnosis of food allergy. During a 1-year follow-up, 73 patients reported accidental allergic reactions and the culprit food products. Food samples received (n = 51) were analyzed for a wide range of suspected noningredient allergens, and risk was quantified. RESULTS: A very diverse range of food products was responsible for the unexpected allergic reactions. Thirty-seven percent (19/51) of products analyzed had 1 to 4 culprit allergens identified that were not supposed to be present according to the ingredient declaration. Concentrations varied from 1 to 5000 mg of protein of the allergenic food per kilogram of food product and were greatest for peanut, milk, and sesame. Milk proteins posed the highest estimated risk for objective allergic reactions. The intake of culprit allergens by patients varied considerably. For those cases in which culprit allergens were detected, the intake of at least 1 allergen exceeded the reference dose or a culprit allergen with a yet unknown reference dose was present. Both patient neglect of precautionary allergen labeling statements and omission of using a precautionary allergen labeling statement by food manufacturers seem to contribute to accidental reactions. CONCLUSION: A wide range of food products are causing accidental reactions in patients with food allergy. Eight different allergens not declared on the ingredient lists were detected in the culprit food products, all of which were representative of allergens regulated in the European Union.

Support staff's perceptions of discontinuing antipsychotics in people with intellectual disabilities in residential care: A mixed-method study.

BACKGROUND: Although there is little evidence on their efficacy regarding challenging behaviour, antipsychotics are the most used psychotropic drugs in residential intellectually disabled people. Discontinuation is possible for some residential clients with intellectual disabilities. This study aimed to gain insight into support staff's perceptions of discontinuing antipsychotics in residential clients with intellectual disabilities. METHOD: Four focus groups were conducted in this mixed-methods study, followed by a survey. RESULTS: A large majority of support staff perceive antipsychotics to be effective in controlling challenging behaviour. Support staff regarded themselves as willing to contribute to the discontinuation of antipsychotics, but were more confident about achieving reductions. CONCLUSIONS: The attitude of the majority of support staff towards discontinuation provides a good basis for regularly reviewing antipsychotics use. A reduction plan should include preliminary steps, methods of monitoring and evaluating the process, and establishing measures for dealing with possible crises.

Use and the Users of a Patient Portal: Cross-Sectional Study.

BACKGROUND: Patient portals offer patients access to their medical information and tools to communicate with health care providers. It has been shown that patient portals have the potential to positively impact health outcomes and efficiency of health care. It is therefore important that health care organizations identify the patients who use or do not use the patient portal and explore the reasons in either case. The Unified Theory of Acceptance and Use of Technology (UTAUT) is a frequently used theory for explaining the use of information technology. It consists of the following constructs: performance expectancy, effort expectancy, social influence, facilitating conditions, and behavioral intention to use. OBJECTIVE: This study aimed to explore the prevalence of patient portal use and the characteristics of patients who use or do not use a patient portal. The main constructs of UTAUT, together with demographics and disease- and care-related characteristics, have been measured to explore the predictive factors of portal use. METHODS: A cross-sectional study was conducted in the outpatient departments for adult patients of a university hospital in the Netherlands. Following outcomes were included: self-reported portal use, characteristics of users such as demographics, disease- and care-related data, eHealth literacy (modified score), and scores of UTAUT constructs. Descriptive analyses and univariate and multivariate logistic regression were also conducted. RESULTS: In the analysis, 439 adult patients were included. Furthermore, 32.1% (141/439) identified as being a user of the patient portal; 31.2% (137/439) indicated as nonusers, but being aware of the existence of the portal; and 36.6% (161/439) as being nonusers not aware of the existence of the portal. In the entire study population, the factors of being chronically ill (odds ratio, OR 1.62, 95% CI 1.04-2.52) and eHealth literacy (modified score; OR 1.12, 95% CI 1.07-1.18) best predicted portal use. In users and nonusers who were aware of the portal, UTAUT constructs were added to the multivariate logistic regression, with chronically ill and modified eHealth literacy sum score. Effort expectancy (OR 13.02, 95% CI 5.68-29.87) and performance expectancy (OR 2.84, 95% CI 1.65-4.90) are shown to significantly influence portal use in this group. CONCLUSIONS: Approximately one-third of the patients of a university hospital self-reported using the patient portal; most expressed satisfaction. At first sight, being chronically ill and higher scores on the modified eHealth literacy scale explained portal use. Adding UTAUT constructs to the model revealed that effort expectancy (ease of use and knowledge and skills related to portal use) and performance expectancy (perceived usefulness) influenced portal use. Interventions to improve awareness of the portal and eHealth literacy skills of patients and further integration of the patient portal in usual face-to-face care are needed to increase use and potential subsequent patient benefits.

Validation of the dutch version of the health education impact questionnaire (HEIQ) and comparison of the Dutch translation with the English, German and French HEIQ.

BACKGROUND: The Health Education Impact Questionnaire (heiQ) evaluates the effectiveness of health education and self-management programs provided to people dealing with a wide range of conditions. Aim of this study was to translate, culturally adapt and validate the Dutch translation of the heiQ and to compare the results with the English, German and French translations. METHODS: A systematic translation process was undertaken. Psychometric properties were studied among patients with arthritis, atopic dermatitis, food allergy and asthma (n = 286). Factorial validity using confirmatory factor analysis, item difficulty (D), item remainder correlation and composite reliability were conducted. Stability was tested using the intra-class correlation coefficient (ICC). RESULTS: Items were well understood and only minor language adjustments were required. Confirmatory fit indices were >0.95 and item difficulty was D ≥ 0.65 for all items in scales showing acceptable fit indices, except for the reversed Emotional distress scale. Composite reliability ranged between 0.67 and 0.85. Test-retest reliability (n = 93) ICC varied between 0.61 and 0.84. Comparisons with other translations showed comparable fit indices. A lower ICC on Self-monitoring and insight scale was observed. CONCLUSIONS: The Dutch translation of the heiQ was found to be well understood and user friendly by patients with Rheumatoid Arthritis, Atopic Dermatitis, Food allergy and asthma and to have robust psychometric properties for evaluating the impact of health education and self-management programs. Given the wide applications of the heiQ and the comparability of the Dutch results with the English, German and French version, the heiQ is a practical and useful questionnaire to evaluate the impact of self-management support programs in different countries and populations with different diseases.

Risk of Non-melanoma Skin Cancer in Patients with Atopic Dermatitis Treated with Oral Immunosuppressive Drugs.

There is uncertainty about the risk of developing non-melanoma skin cancer (NMSC), including basal cell carcinoma and squamous cell carcinoma (SCC), in patients with atopic dermatitis (AD) treated with oral immunosuppressive drugs. A total of 557 patients with AD treated with these drugs in the University Medical Center Utrecht and Groningen, the Netherlands, were analysed. NMSC after oral immunosuppressive treatment was reported in 18 patients (3.2%). The standardized incidence ratio for developing SCC was 13.1 (95% confidence interval (95% CI) 6.5-19.7). Patients developing NMSC were older at the start of therapy (p<0.001) and data lock (p<0.001) compared with patients without NMSC. No significant differences were found in sex, cumulative days of oral immunosuppressive drugs and follow-up between these groups (p=0.42, p=0.88, and p=0.34, respectively). In interpreting these results it is important to include other factors, such as lack of association between treatment duration and tumour development and the long interval between treatment discontinuation and tumour development in some patients.