Patient-reported outcome measures for the assessment of stress in neurological patients: An integrative review.

Background: Patient stress is often overlooked in the care of patients with neurological problems. Nursing theorists have previously heralded stress assessment through conceptual clarification, while clinical nurses in the health care system hold an ideal position for implementation of assessment and coordination of support. Integrated with a hospital assessment and support scheme, recognition of stress as a target of systematic assessment can lead to improved clinical outcomes. Objective: The aim of the study was to describe and compare patient-reported outcome measures suitable for assessment of the stress response as symptoms in neurological patients. Design: This study is an integrative review and concept development of patient stress based on qualitative and quantitative analysis of available self-reporting instruments. Methods: Instruments were retreived with a systematic search from PubMed, CINAHL, PsychINFO and Web of Science reference databases on August 2, 2021. Search terms associated with the concept of stress symptoms were used. Instrument inclusion was done with the guidance of authoritative symptom inventories, with partial confirmation by a second author to mitigate bias. In the analysis, the instruments included in the review were quantitatively described and compared. Insights from the instrument composition led to clarification of our concept of stress response to further refine the list of instruments suitable for self-assessment of the stress status. This study was not registered. Results: Based on the inclusion criteria, 23 patient-reported outcome measures extending over a variety of stress concepts were included. The similarity of items among the instruments implied a symptom cluster delineated by 59 common symptom subclasses that were grouped together in a re-classification of instrument items. A comparative quantitative analysis prompted us to distinguish the concept of stress response from antecedent, consequent, and related concepts as a manifestation of mental, somatic, and behavioral domains. Ten instruments with items covering the three domains, each with unique qualities regarding number of items, measured spread, and letter count were described. Conclusions: Within an organizational framework, effective allotment among types of support can be founded on the patient's stress status and the stressors. The stress status manifests itself as a set of measurable symptoms. Optimal instruments for use in systematic clinical assessment of neurological patients' stress status should satisfy the suggested specification of the stress response with a minimal number of items and concise wording. Finding and including the relevant instruments for analysis were the main limitation of the study. Tweetable abstract: Stress of neurological patients needs to be assessed and addressed. We ranked 10 suitable instruments that can be useful in the assessment.

Global-, regional- and country-level estimates of the work-related burden of diseases and accidents in 2019.

OBJECTIVE: This study provides the global-, regional- and country-level estimates on the work-related burden of diseases and accidents for 2019, including deaths, disability adjusted life years (DALY) and economic losses. METHODS: Data on occupational illnesses and injuries from international organizations, institutions, and public websites were used. Risk ratios (RR) and population attributable fractions (PAF) for the risk factor-outcome pairs were derived from the literature. Estimated mortality and DALY for a group of seven major diseases covering 120 risk-outcome pairs attributable to work were calculated for 181 countries. RESULTS: Globally, 2.9 million deaths were attributed to work, with 2.58 million deaths due to work-related diseases and 0.32 million related to occupational injuries. Globally, work-related diseases with a long latency period are increasing, while the number of occupational injuries has decreased. Work-related circulatory diseases were the major cause of 912 000 deaths globally, followed by 843 000 work-related malignant neoplasms. In high-income, American, Eastern European and Western Pacific World Health Organization (WHO) regions, however, work-related malignant neoplasms comprised the biggest disease group. DALY attributable to work were estimated to be 180 million in 2019, with an associated economic loss of 5.8% of global GDP. New estimates of psychosocial factors increased the global loss. CONCLUSIONS: The burden of work-related diseases and injuries increased by 26% from 2.3 million annual deaths in 2014 to 2.9 million in 2019. The DALY attributable to work have also substantially increased from 123 million in 2014 to 180 million in 2019 (47% increase). We found large regional and country variations.

Validation of the Finnish version of the Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS) and evaluation of the applicability of the Multiple Sclerosis Neuropsychological Questionnaire (MSNQ) and the Fatigue Scale for Motor and Cognitive Functions (FSMC).

OBJECTIVES: Cognitive impairment is frequent in multiple sclerosis (MS) as approximately half of the patients manifest some degree of cognitive impairment. The Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS) has been designed for brief cognitive evaluation. The purpose of the study was to validate the BICAMS along with the Finnish versions of one self-rating questionnaire each for cognition and fatigue. METHODS: A total of 65 MS patients and 45 healthy controls (HC) were assessed with the BICAMS, the Multiple Sclerosis Neuropsychological Questionnaire (MSNQ), and the Fatigue Scale for Motor and Cognitive Functions (FSMC) twice, approximately within nine days. RESULTS: MS patients scored markedly lower than the HCs on each of the three tests of the BICAMS. Of the patients, 60% scored at least 1.5 SD below the mean of the HCs on at least one test; 49% on the SDMT, 26% on the CVLT-II, and 28% on the BVMT-R. Correlation coefficients for the repeated measurement were between 0.75 and 0.89 for the three tests in the whole study sample. MS patients reported more cognitive symptoms and more fatigue than the HCs. Cronbach's alpha was 0.94 for the MSNQ and 0.98 for the FSMC. Correlation coefficient for the repeated measurement was 0.91 for the MSNQ and between 0.92 and 0.94 for the FSMC scores for the whole study sample. CONCLUSIONS: The present study supports the validity of the Finnish version of the BICAMS. The SDMT was the most sensitive of the three BICAMS tests and showed cognitive impairment in half of the patients. The Finnish versions of the MSNQ and the FSMC proved useful tools in approaching concerns related to cognition and fatigue.

Design, Development, and Testing of an App for Dual-Task Assessment and Training Regarding Cognitive-Motor Interference (CMI-APP) in People With Multiple Sclerosis: Multicenter Pilot Study.

BACKGROUND: Dual tasking constitutes a large portion of most activities of daily living; in real-life situations, people need to not only maintain balance and mobility skills, but also perform other cognitive or motor tasks at the same time. Interest toward dual-task training (DTT) is increasing as traditional interventions may not prepare patients to adequately face the challenges of most activities of daily living. These usually involve simultaneous cognitive and motor tasks, and they often show a decline in performance. Cognitive-motor interference (CMI) has been investigated in different neurological populations, but limited evidence is present for people with multiple sclerosis (MS). The use of computerized tools is mandatory to allow the application of more standardized assessment and rehabilitation intervention protocols and easier implementation of multicenter and multilanguage studies. OBJECTIVE: To describe the design and development of CMI-APP, an adaptive and interactive technology tablet-based app, and to present the preliminary results of a multicenter pilot study involving people with MS performed in several European centers for evaluating the feasibility of and adherence to a rehabilitation program based on CMI-APP. METHODS: CMI-APP includes user-friendly interfaces for personal data input and management, assessment of CMI, and DTT. A dedicated team developed CMI-APP for Android tablets above API level 14 (version 4.0), using C# as the programming language and Unity and Visual Studio as development tools. Three cognitive assessment tests for working memory, information processing speed, and sustained attention and four motor assessment tests for walking at different difficulty levels were implemented. Dual cognitive-motor tasks were performed by combining single cognitive and motor tasks. CMI-APP implements exercises for DTT involving the following 12 cognitive functions: sustained attention, text comprehension, verbal fluency, auditory discrimination, visual discrimination, working memory, information processing speed, auditory memory, visual memory, verbal analog reasoning, visual analog reasoning, and visual spatial planning, which can be performed during walking or stepping on the spot. Fifteen people with MS (mean age 52.6, SD 8.6 years; mean disease duration 9.4, SD 8.4 years; mean Expanded Disability Status Scale score 3.6, SD 1.1) underwent DTT (20 sessions). Adherence to the rehabilitation program was evaluated according to the percentage of performed sessions, perceived exertion during the training (Borg 15-point Ratings of Perceived Exertion [RPE] Scale), and subjective experience of the training (Intrinsic Motivation Inventory [IMI]). RESULTS: The adherence rate was 91%. DTT was perceived as "somewhat difficult" (mean RPE Scale score 12.6, SD 1.9). IMI revealed that participants enjoyed the training and felt that it was valuable and, to some extent, important, without feelings of pressure. They felt competent, although they did not always feel they could choose the exercises, probably because the therapist chose the exercises and many exercises had few difficulty levels. CONCLUSIONS: CMI-APP is safe, highly usable, motivating, and well accepted for DTT by people with MS. The findings are fundamental for the preparation of future large-sample studies examining CMI and the effectiveness of DTT interventions with CMI-APP in people with MS.

Assessing data protection and governance in health information systems: a novel methodology of Privacy and Ethics Impact and Performance Assessment (PEIPA).

BACKGROUND: Data processing of health research databases often requires a Data Protection Impact Assessment to evaluate the severity of the risk and the appropriateness of measures taken to comply with the European Union (EU) General Data Protection Regulation (GDPR). We aimed to define and apply a comprehensive method for the evaluation of privacy, data governance and ethics among research networks involved in the EU Project Bridge Health. METHODS: Computerised survey among associated partners of main EU Consortia, using a targeted instrument designed by the principal investigator and progressively refined in collaboration with an international advisory panel. Descriptive measures using the percentage of adoption of privacy, data governance and ethical principles as main endpoints were used for the analysis and interpretation of the results. RESULTS: A total of 15 centres provided relevant information on the processing of sensitive data from 10 European countries. Major areas of concern were noted for: data linkage (median, range of adoption: 45%, 30%-80%), access and accuracy of personal data (50%, 0%-100%) and anonymisation procedures (56%, 11%-100%). A high variability was noted in the application of privacy principles. CONCLUSIONS: A comprehensive methodology of Privacy and Ethics Impact and Performance Assessment was successfully applied at international level. The method can help implementing the GDPR and expanding the scope of Data Protection Impact Assessment, so that the public benefit of the secondary use of health data could be well balanced with the respect of personal privacy.

Global estimates of the burden of injury and illness at work in 2012.

This article reviews the present indicators, trends, and recent solutions and strategies to tackle major global and country problems in safety and health at work. The article is based on the Yant Award Lecture of the American Industrial Hygiene Association (AIHA) at its 2013 Congress. We reviewed employment figures, mortality rates, occupational burden of disease and injuries, reported accidents, surveys on self-reported occupational illnesses and injuries, attributable fractions, national economic cost estimates of work-related injuries and ill health, and the most recent information on the problems from published papers, documents, and electronic data sources of international and regional organizations, in particular the International Labor Organization (ILO), World Health Organization (WHO), and European Union (EU), institutions, agencies, and public websites. We identified and analyzed successful solutions, programs, and strategies to reduce the work-related negative outcomes at various levels. Work-related illnesses that have a long latency period and are linked to ageing are clearly on the increase, while the number of occupational injuries has gone down in industrialized countries thanks to both better prevention and structural changes. We have estimated that globally there are 2.3 million deaths annually for reasons attributed to work. The biggest component is linked to work-related diseases, 2.0 million, and 0.3 million linked to occupational injuries. However, the division of these two factors varies depending on the level of development. In industrialized countries the share of deaths caused by occupational injuries and work-related communicable diseases is very low while non-communicable diseases are the overwhelming causes in those countries. Economic costs of work-related injury and illness vary between 1.8 and 6.0% of GDP in country estimates, the average being 4% according to the ILO. Singapore's economic costs were estimated to be equivalent to 3.2% of GDP based on a preliminary study. If economic losses would take into account involuntary early retirement then costs may be considerably higher, for example, in Finland up to 15% of GDP, while this estimate covers various disorders where work and working conditions may be just one factor of many or where work may aggravate the disease, injury, or disorders, such as traffic injuries, mental disorders, alcoholism, and genetically induced problems. Workplace health promotion, services, and safety and health management, however, may have a major preventive impact on those as well. Leadership and management at all levels, and engagement of workers are key issues in changing the workplace culture. Vision Zero is a useful concept and philosophy in gradually eliminating any harm at work. Legal and enforcement measures that themselves support companies and organizations need to be supplemented with economic justification and convincing arguments to reduce corner-cutting in risk management, and to avoid short- and long-term disabilities, premature retirement, and corporate closures due to mismanagement and poor and unsustainable work life. We consider that a new paradigm is needed where good work is not just considered a daily activity. We need to foster stable conditions and circumstances and sustainable work life where the objective is to maintain your health and work ability beyond the legal retirement age. We need safe and healthy work, for life.

Brief International Cognitive Assessment for MS (BICAMS): international standards for validation.

An international expert consensus committee recently recommended a brief battery of tests for cognitive evaluation in multiple sclerosis. The Brief International Cognitive Assessment for MS (BICAMS) battery includes tests of mental processing speed and memory. Recognizing that resources for validation will vary internationally, the committee identified validation priorities, to facilitate international acceptance of BICAMS. Practical matters pertaining to implementation across different languages and countries were discussed. Five steps to achieve optimal psychometric validation were proposed. In Step 1, test stimuli should be standardized for the target culture or language under consideration. In Step 2, examiner instructions must be standardized and translated, including all information from manuals necessary for administration and interpretation. In Step 3, samples of at least 65 healthy persons should be studied for normalization, matched to patients on demographics such as age, gender and education. The objective of Step 4 is test-retest reliability, which can be investigated in a small sample of MS and/or healthy volunteers over 1-3 weeks. Finally, in Step 5, criterion validity should be established by comparing MS and healthy controls. At this time, preliminary studies are underway in a number of countries as we move forward with this international assessment tool for cognition in MS.

eHealth in Europe: towards higher goals.

Significant events are unfolding in the field of eHealth in Europe. eHealth has been a strategic priority of the European Commission in both the eEurope 2002 and 2005 Action Plans. But how are developments on the national level progressing? The authors contrast the status-quo of eHealth in the EU-15 with the latest trends and key action priorities in the EU-25 after the Union's latest enlargement in May 2004. The initiatives and actions of the European Commission are presented vis-à-vis those of national Member States, particularly in terms of strategic priorities and implementation actions. The review is accompanied by an analysis of expert feedback on eHealth drivers and barriers.

Patient participation in decision-making on the introduction of home respiratory care: who does not participate?

OBJECTIVES: In this study we examined home respiratory patients' participation in decision-making on whether to begin home respiratory care therapy, and this participation in decision-making during the latest visit to the clinic. SUBJECTS AND METHODS: The target population consisted of patients who were using home respiratory care devices and who were visiting the outpatient clinics. Postal questionnaires were sent to 4159 patients (40% of respiratory care device users in Finland). A total of 3336 answered (response rate 80%) and 3153 were eligible for analysis. Odds ratios, chi-square tests, Mann-Whitney U-test and stepwise logistic regression analysis were used in the data analyses. RESULTS: Patients who did not participate in decision-making were more frequently older people, women and had lower income than the other patients. While these results parallel those of previous studies, in contrast we found more women with high education to be non-participants. Non-participants were not participating in decision-making during their latest visit to the clinic in spite of the fact that they considered participation almost as important as did the other patients. Non-participants were less satisfied with the quality of care given and felt that their life had improved less than did the other patients. CONCLUSION: The ethical principle of equal opportunities to participate in care decisions was not applied among home respiratory care patients in this study. The results challenge health-care professionals to notice inequalities and improve their practices. The results can be generalized to all home respiratory care patients in Finland.