Emotional Status Research Articles

Impact of COVID-19 on the Healthcare Workers: Perspective from the Nursing Fraternity

The novel coronavirus or SARS-COVID-19 has been declared a Pandemic by the WHO due to its high transmission rate and mortality rate. This has put a huge strain on healthcare workers such as doctors, nurses, and other paramedical workers. We surveyed twenty-six nurses from varying nursing professions in West Bengal to identify their level of stress and emotional status associated with the outbreak of the disease. The survey questionnaire was designed using the Health Belief Model from Rosenstock et. al. Results showed significant changes in health belief constructs of perceived susceptibility, perceived beliefs, and perceived severity to the COVID-19 crisis among nurses across different demographics. Thus, there is a need to adapt screening strategies to address the psychological aspects of healthcare workers to avert any future crisis. Keywords: COVID-19, nursing, health, Health Belief Model

Features of the quality of life in children with chronic gastritis and psychological characteristics of the personality of patients

Introduction. Studies by foreign authors indicate a decrease in the quality of life in children with chronic abdominal pain within the framework of organic and functional pathology. The aim of the work was to analyze quality of life in children with chronic gastritis, taking into account the psychological characteristics of the patients’ personality.
 Materials and methods. The study included 84 patients with chronic gastritis. The average age of the patients was 12.10 ± 2.84 years. The quality of life was assessed using the PedsQL™ 4.0 questionnaire, psycho-emotional characteristics — the HADS and Spielberger–Khanin questionnaires.
 Results. All patients are characterized by a significant decrease in the quality of life in general and for each component of the child’s life functioning studied by the questionnaire. A significant difference was revealed at the level of the integral indicator of quality of life (p = 0.023) and within the framework of role functioning (p = 0.035) depended on the intensity of the pain syndrome. In the presence of nausea, the overall quality of life was lower than in its absence (p = 0.008). Quality of life related to physical functioning was lower in children complaining of periodic vomiting (p = 0.002). A high frequency of subclinical and clinically significant depression was revealed (59.5%). Patients with subclinical and clinical significant depression had statistically significantly lower quality of life indicators in terms of emotional (p = 0.014) and social functioning (p = 0.010). A significant prevalence of personal and situational anxiety in children was revealed. A decrease in the quality of life in children was determined within the framework of the general integral indicator with a high degree of situational anxiety (p = 0.038). 
 Conclusion. The study showed a significant decrease in the quality in life of children with chronic gastritis disease in comparison with healthy children, while the degree of decrease correlated with the presence and severity of depression and both personal and situational anxiety. At present, it is quite difficult to say unambiguously what is primary: the influence of emotional status on the disease and quality of life, or vice versa.

Clinician-Spoken Plain Language in Health Care Encounters: A Qualitative Analysis to Assess Measurable Elements.

Good communication and use of plain language in health care encounters improve outcomes, including emotional health, symptom resolution, and functional status. Yet there is limited research on how to measure and report spoken plain language, which is the use of familiar, clear language. The authors aimed to describe key, measurable elements of spoken plain language that can be assessed and reported back to clinicians for self-reflection. The authors conducted secondary analysis of transcripts from recorded encounters between breast cancer surgeons and patients with early-stage breast cancer. Two coders used a hybrid qualitative analysis with a framework based on U.S. Federal Plain Language Guidelines. To develop major themes, they examined (1) alignment with the Guidelines and (2) code frequencies within and across transcripts. They also noted minor themes. From 74 transcripts featuring 13 surgeons, the authors identified 2 major themes representing measurable elements of spoken plain language: (1) clinicians had a propensity to use both explained and unexplained medical terms, and (2) clinicians delivered information using either short turns (one unit of someone speaking) with 1 topic or long turns with multiple topics. There were 3 minor themes that were not indicative of whether or not clinicians used spoken plain language. First, clinicians regularly used absolute risk communication techniques. Second, question-asking techniques varied and included open-ended, close-ended, and comprehension checks. Third, some clinicians used imagery to describe complex topics. Clinicians' propensity to use medical terms with and without explanation and parse encounters into shorter or longer turns are measurable elements of spoken plain language. These findings will support further research on the development of a tool that can be used in medical education and other settings. This tool could provide direct and specific feedback to improve the plain language practices of clinicians in training and beyond.

Implementation method of intelligent emotion-aware clothing system based on nanofibre technology

The creation of smart clothing technologies now has more options because of the merging of fashion design, and wearable technology with nanofibre technology. This study suggests a means for putting a nanofibre-based, intelligent, emotion-aware clothing system into practice. By recognizing and reacting to the wearer's psychological state, the system seeks to improve user convenience and well-being. In this study, a unique, self-sufficient weight-tuned Kohonen neural network (SW-KNN) method is used to categorize emotional states. To determine the wearer's emotional state, we first collect a dataset of signals from the body, including pulse, body temperature, and perspiration production. The dataset is then added to the preprocessing stage, where the raw data is normalized using the min-max method. The important features from the cleaned data are then extracted using the Fast Fourier Transform (FFT). The smart control unit processes the physiological signals that have been acquired. The proposed approach is utilized to categorize the wearer's emotional state, and the white shark optimization (WSO) approach is used to improve the classification accuracy. The control unit has a microchip and wireless connectivity abilities, enabling it to send the devices’ connected devices the classified emotional status. The clothing technology can continuously modify its features based on the identified emotional state to enhance the wearer's comfort. The findings of the study stated that the proposed technique has provided accuracy and precision of 97.8% and 98.1% respectively.

Correlation between the degree of cognitive impairment and emotional state in patients with Alzheimer’s disease.

This study aimed to investigate the correlation between cogni-tive dysfunction and emotional state in patients with Alzheimer’s disease and then propose intervention strategies. One hundred twenty-five patients with Alzheimer’s disease from June 2019 to May 2022 were selected as the study subjects and divided into two groups based on the degree of cognitive impair-ment, both receiving routine drug treatment and cognitive rehabilitation in-tervention. The Montreal Cognitive Assessment (MoCA) and the Positive and Negative Affect Scale (PANAS) were used to evaluate the cognitive function and emotional status of two groups of patients before the intervention and four and eight weeks of intervention and to analyze the correlations between the two. The results showed statistically significant differences between the two groups MoCA and PANAS scores (P<0.05). Before the intervention, the patient’s MoCA score was positively correlated with the PANAS positive emo-tion score and negatively correlated with the PANAS negative emotion score (P<0.05). After four and eight weeks of intervention, the patient’s MoCA score was positively correlated with the PANAS positive emotion score (P<0.05) and negatively correlated with the PANAS negative emotion score (P<0.05).

Caregivers' perspectives of community acceptance before and after surgical treatment for their child's disability.

In Tanzania, about 600 000 youth between 5 and 24 years old have a disability. Individuals with disabilities face numerous obstacles due to social stigma. The aim of this formative evaluation is to assess how caregivers of children with correctable disabilities (e.g., cleft lip/palate, club foot, and burn scar contractures) in Tanzania perceive their community's acceptance of their child before and after surgical treatment. Semi-structured interviews were conducted with 80 caregivers of children with disabilities treated at Kafika House in Arusha, Tanzania. The constant comparative method identified themes regarding the caregivers' feelings on their child's functional abilities and experiences of stigma in their community. Caregiver perceptions of stigma before and after surgical treatment were categorized and quantified as 'positive', 'neutral' and 'negative'. Thematic analysis of the 80 interviews resulted in five major themes: (1) stigma and acceptance (pre-treatment) and (2) post-treatment; (3) functional abilities (pre-treatment) and (4) post-treatment; and (5) emotional impact (pre- and post-treatment). These themes indicate caregivers and their children experience a range of emotional impacts before and after treatment, more severe stigma before treatment, and overall better social, emotional and functional status after treatment. Frequency analysis of caregiver experiences indicated that stigma experienced by children and their families decreased from 75% before surgical treatment to 2.5% after surgery. Surgical intervention and rehabilitation of physical disabilities mitigated experiences of social stigma for both children and their caregivers. Findings support the need for expanded treatment of correctable disabilities, larger investments in community-based rehabilitation programmes and further interventions to support stigmatized parents and their children.

Building Resilience and Improving Neurocognition (BRAIN): Feasibility and acceptability of a novel, multimodal telehealth cognitive rehabilitation intervention

Objective Cognitive deficits can impact daily functioning, general health, and psychological functioning. Multimodal group rehabilitation interventions designed for telehealth administration can optimally provide access and essential services for those who would otherwise not seek these services. We conducted a quality improvement project examining the feasibility and acceptability of Building Resilience and Improving Neurocognition (BRAIN), an eight-week multimodal telehealth cognitive rehabilitation group. Method Participants were veterans referred to a VA neuropsychology clinic for group cognitive rehabilitation. Self-report measures were used to collect information about general health, cognitive, and psychological concerns pre- and post-intervention. Twenty-two veterans with cognitive concerns pertaining to psychosocial factors or neurocognitive disorders completed pre- and post-intervention outcome measures. Results Paired samples t-tests evaluated whether BRAIN improved self-reported emotional and functional status based on five self-report measures: MSNQ, WHODAS 2.0, PHQ-9, GAD-7, and PCL-5. Results showed clinically significant reductions on the MSNQ, PHQ-9 and PCL-5, with moderate effect sizes. On the MSNQ, participants endorsed decreased symptom severity on items associated with distractibility, slowed problem solving, requiring reminders, and difficulty multitasking. Conclusion The results indicate that BRAIN holds promise as a telehealth cognitive rehabilitation group intervention for reducing subjective cognitive concerns and symptoms of depression and PTSD.

Temporal Landmarks and Nostalgic Consumption: The Role of the Need to Belong.

This study investigates the influence of temporal landmarks on nostalgic consumption through the mediating role of the need to belong. In particular, the study identifies end landmarks as one of the triggers of landmarks, a phenomenon that has not been studied in the existing nostalgic consumption literature. The research is composed of one pilot study and three experiments to test our research hypotheses. The results show that end temporal landmarks trigger feelings of nostalgia, which leads to nostalgic consumption through the need to belong. This study underscores the mediating role of the need to belong, which plays an important role in leading to nostalgic consumption. Building upon theoretical perspectives on the need to belong, our study enriches the research literature by linking extreme consumer emotional statuses, such as social anxiety, to the consumer need to belong, showing that consumer nostalgic consumption can become a coping strategy that counteracts these negative feelings and helps in regaining connection and supporting social relationship networks. Marketers may use the signs of end temporal landmarks to increase consumers' nostalgia, which, in turn, will enhance consumers' need to belong and thus lead to the purchasing and consumption of nostalgic products.

Focusing attention on others' negative emotions reduces the effect of social relationships on children's distributive behaviors.

The present study investigates whether directing five- to six-year-old children's attention to hypothetical resource recipients that included familiar and non-familiar people would affect their favoritism toward a familiar person, as reflected in how they allocated resources. In Experiment 1, we instructed participants to give one of several stickers to another person or keep all the stickers for themselves. Under the control conditions, participants more frequently gave stickers to friends than to non-friends. However, when asked about others' emotions, they distributed stickers equally among friends and non-friends. Therefore, focusing on others' thoughts reduced participants' favoritism toward friends. Experiment 2 tested whether focusing on both emotional valences would affect favoritism toward a familiar person, as reflected in children's resource distribution choices. Experiment 2 was identical to Experiment 1, except we asked participants about the other person's emotional valence. When asked about others' negative emotions, participants distributed the stickers equally between themselves and others. However, when asked about others' positive emotions, they distributed more stickers to friends than to non-friends. Neither others' emotional valence nor group status affected the perceived intensity of their emotion or the participant's emotional state. These results suggest that children's favoritism toward friends can be reduced by encouraging them to think about others' negative emotional states.

The state of antioxidant system and emotional status in rats with mild blast-induced traumatic brain injury

The aim was to evaluate the markers of emotional status and the antioxidant system activity in rats with blast-induced traumatic brain injury. Materials and methods. The study carried out on 85 sexually mature male Wistar rats in compliance with the current legislation on humane treatment of animals. The selected rats were randomly divided into three groups: I – study in the Barnes maze; II – study in the Open Field test; and III – study of glutathione reductase activity in a solution of rat erythrocyte’s hemolysate. In each of these groups, three groups were formed: Experimental – exposed to a shock wave with an overpressure of 26.4 ± 3.6 kPa; the Sham – subjected only to halothane and fixation; and the Intact group. Results. Showed a disturbance in the emotional status and the oxidative stress development in rats with blast-induced trauma. The time of experimental rats freezing in the Barnes maze increased by 69 % (p < 0.01) on 28th day compared to 1st day, indicating the development of fear and negative emotionality. Changes in the defecation acts number indicate the development of anxiety in the acute period (1–3 days), followed by a depression-like state. The glutathione reductase activity in experimental rats was significantly higher compared to sham and intact rats, but gradually decreased inside in the experimental group. The results of the correlation analysis indicate the presence of weak relationships between the freezing time and the glutathione reductase activity. The positive relationship of a strong degree was found between the number of defecation acts and glutathione reductase on 1st day and a negative relationship of a strong degree was found on 7th day. Conclusions. We suppose that oxidative stress is a link, but not the leading one, in the pathogenesis of emotional disturbance in rats with blast-induced brain injury.

Complementary Therapy: Application of Photobiomodulation in Self-Care and Patient Care

Photobiomodulation (PBM), also known as low-level laser therapy, is a non-invasive light therapy that applies near-infrared light sources near target tissues. PBM allows photons to penetrate tissues and interact with cells, promoting photophysical and chemical changes that result in desired changes at the molecular, cellular, and tissue levels (Oliveira et al., 2022; Shetty et al., 2023). This complementary therapy has garnered significant research attention both domestically and internationally. The results of recent research indicate non-invasive transcranial light stimulation can enhance high-frequency oscillations such as α and β waves, leading potentially to improved cognitive and neurological functions, memory, attention, and emotional status in healthy adults (Shetty et al., 2023). This mode of therapy is recommended as a non-pharmacological intervention for pain relief (Ross, 2022) and has been found to improve oral pain and quality of life in patients with burning mouth syndrome and in those undergoing hematopoietic stem cell transplantation (Camolesi et al., 2022; Chan et al., 2023). Also, PBM has been promoted as a method of enhancing wound healing (Oliveira et al., 2022) and of reducing the respiratory disturbance index in patients with obstructive sleep apnea (de Camargo et al., 2020). Researchers in Taiwan have also applied PBM to alleviate the pain associated with heel prick blood sampling in newborns and suggested using low-level laser therapy as a pain relief measure for full-term newborns undergoing invasive procedures (Wu et al., 2023). For the column in this issue, we have invited domestic nursing and optoelectronic scholars who have conducted extensive research in the field of PBM to explain the related mechanisms, share research findings, and introduce PBM devices that may be used in clinical, home, and school settings. Considering the impact of shift work on sleep among healthcare professionals, we also hope to provide nurses with different insights and options for self-care and patient care through the research and product introductions provided. Finally, an article on assessing aging and promoting health from a traditional Chinese medicine perspective is included to offer nursing professionals a holistic approach to self-care and preventive concepts based on natural rhythms.

Brain-computer interface based generative design framework: an empirical multi-domain application exploration based on human-factors and form-generation interactive mechanisms

Human experience in an architectural space is defined as the state of mind that is reflected on their physiological, emotional, and cognitive statuses. Ergonomic data, as an objective manifestation of quantifiable signals generated by the human body during specific spatial perception processes, serves as a vital foundation for spatial evaluation and guidance for optimization. Electroencephalogram (EEG) signals, as quantifiable sensory indicators directly arising from the interaction between individuals and external stimuli, hold substantial potential as a data-driven force and as a means of optimization assessment in the study of generative design. Although existing research has effectively established a unidirectional relationship between EEG and spatial-environment assessment, there is still a notable deficiency in addressing the creation of a two-way, mutually informative feedback mechanism. This study investigates the applicability of EEG signals as a data-driven basis for generative design across universal methods. It delves into various scales and scenarios of digital design, from the microscopic to the macroscopic, encompassing planar and volumetric visual elements, the design of architectural spatial environmental characteristics, and urban space design grounded in human perceptual sightlines. The research examines the viability and appropriateness of an interactive generative design method based on form generation, predicated on human-factor physiological data exemplified by EEG signals. This paper initially conducts a methodological and tool-based examination of current research in ergonomics-driven design and the use of EEG for design assessment, thereby discussing the objective feasibility of employing EEG in interactive generative design. Subsequently, the study establishes an integrated data flow system encompassing multiple hardware and software components to form a comprehensive workflow. Following this setup, empirical studies based on this method are conducted at different scales of application, yielding corresponding form-generative outcomes. Finally, this paper substantiates the rationality and feasibility of this framework in multi environment design domains.

Assessment of emotional and professional status in the HoReCa sector: burnout level, impact of incivility and organizational support

The presented study highlights a significant correlation between burnout and lack of workplace civility, with inappropriate behaviors from others (clients or colleagues) contributing tothe impairment of employees' well-being. Regarding organizational support, a negative correlation is observed between burnout and perceived support. Organizational support acts as a buffer against stress, and promoting social interactions is essential for preventing professional exhaustion. Withinthe hypothesis regarding age, it is observed that young individuals in the Horeca industry (18-25 years old) exhibit a higher level of burnout compared to those between 36 and 45 years old. The explanation lies in different stages of professional and personal development, emphasizing the importance of organizational support for all age groups. Shaping the hypothesis that the lack of civility is encountered differently depending on the subjects' tenure in the workforce, the results indicate that those with less than 5 years of experience experience a more pronounced lack of civility. New employees are more vulnerable to stress, and organizations are encouraged to implementsupport strategies, such as team-building activities, to facilitate adaptation and prevent impolite behaviors.

Multidisciplinary prehabilitation to improve frailty and functional capacity in high-risk elective surgical patients: a retrospective pilot study

BackgroundFrailty is associated with worse outcomes and higher healthcare costs. The long waiting time for surgery is a potential ‘teachable’ moment. We examined the feasibility and safety of a pilot prehabilitation programme on high-risk frail patients undergoing major elective surgery.MethodsA single-centre, retrospective pilot study (Dec 2020–Nov 2021) on a one-stop prehabilitation programme (structured exercise training, nutritional counselling/therapy, and psychological support) in collaboration with geriatricians and allied health professionals. At least 4 weeks before surgery, patients at high risk of frailty or malnutrition, or undergoing major hepatectomy, esophagectomy, pancreaticoduodenectomy, or radical cystectomy, were referred for prehabilitation (2–3 sessions/week). The primary outcomes were the feasibility and safety of prehabilitation. The secondary outcomes were changes in functional, emotional, and nutritional status and days alive and at home within 30 days after surgery (DAH30) associated with prehabilitation.ResultsOver a 12-month period, 72 out of 111 patients (64.9%) from the Perioperative Medicine Clinic were eligible for prehabilitation, of which 54 (75%) were recruited. The mean (standard deviation) age was 71.9 (6.9) years. The adherence rate to 3 weeks of prehabilitation was high in 52 (96.3%) participants. Prehabilitation improved exercise capacity (P = 0.08), enhanced some functional mobility measures (P = 0.02), and increased nutritional energy (P = 0.04) and protein intakes (P < 0.01). However, prehabilitation-related changes in muscle strength, cognitive function, and emotional resilience were minimal. The median (interquatile range) DAH30 was 19 (14–23) days. No adverse events were reported.ConclusionsThis outpatient-based, one-stop multidisciplinary prehabilitation programme was feasible, safe, and improved several measures of patient’s physiological reserve and functional capacity.Clinical trial registrationNCT05668221.

Self-care practices in decision-making: How nutrition and habits may affect decision in business

Decision-making process (DMP), our everyday most frequent action, has attracted the attention of a wide range of disciplines aiming to identify and analyze its determinants, encompassing specific steps. This paper intends to investigate whether nutrition and habits of managers/employees–via hormone levels–might statistically influence DMP in the business field. Some groups of food could encourage the secretion of specific hormones, which in turn influence the brain’s function that may in turn affect humans’ behavior and emotional status, and hence, their decision. To explore the set hypothesis, fieldwork was undertaken to an extensive random sample, from Greek companies/organizations, using appropriately designed questionnaire to select and statistically analyze related quantitative and qualitative information. The questionnaire was distributed to the employees/managers (n=242) of Greek companies. The findings confirm this hypothesis (statistical significance, p&amp;lt;0.05) and indicate that DMP is influenced by nutrition and habits in interaction with body mass index.

The Psychological Impact on Parents of Children who Receive an Inconclusive Diagnosis for Cystic Fibrosis following Newborn Screening: A Systematic Mini-Review.

Newborn screening (NBS) has been available for the diagnosis of cystic fibrosis (CF) over the last decades. Through the implementation of NBS, a new designation emerged, that of CF related metabolic syndrome (CRMS) or cystic fibrosis screen positive inconclusive diagnosis (CFSPID). As there is uncertainty regarding the clinical progression of these infants to CF, some studies have investigated the psychological impact of CRMS/CFSPID on their parents. This systematic narrative review aimed to describe the findings of the relevant studies. The number of studies is limited and the study samples are relatively small. It seems that there is a negative impact of CRMS/CFSPID on parental mental health. While some studies indicated similar levels of parental anxiety among those with infants diagnosed with CF and those with CRMS/CFSPID, not all studies reached the same conclusion. Parental uncertainty represents another mental dimension of the impact associated with the designation of CRMS/CFSPID. These observations suggest that parents of infants with CRMS/CFSPID should be provided with effective communication, and it may also be beneficial to consider parental mental screening. More robust and long-term studies are required to detect differences in parental emotional status between those with infants diagnosed with CF and those with CRMS/CFSPID.

Altered orientation dispersion index of white matter in individuals with insomnia during the COVID-19 pandemic: A study combining neuroimaging technique and Mendelian randomization

Coronavirus disease 2019 (COVID-19) can lead to insomnia. However, associations between COVID-19-caused insomnia and white matter (WM) changes are unclear. All subjects had ever been infected with COVID-19. We investigated 89 insomniacs (29 chronic insomniacs, 33 new-onset insomniacs, 27 aggravated insomniacs) and 44 matched non-insomnia participants. Neurite orientation dispersion and density imaging (NODDI) was performed to identify micro-structural alterations of WM, and twelve scales related to sleeping status, memory, attention, learning, emotional status, and executive functions were used. Then, correlations between insomnia/cognitive-behavioral functions and diffusion metrics were tested. To eliminate influence of pre-COVID-19 factors on insomnia, causal relationships between COVID-19 and WM changes were validated by Mendelian randomization (MR) analysis. The significant brain regions of COVID-19-caused insomnia were intersected results of tract-based spatial statistics (TBSS) and MR analyses. Compared to non-insomnia group, insomnia group and its subgroups including post-COVID-19 aggravated or unchanged chronic insomnia group had higher orientation dispersion index (ODI) in extensive brain regions. The left superior longitudinal fasciculus (SLF), left posterior thalamic radiation (PTR), and left cingulate gyrus (CG) were specific brain regions in COVID-19-induced insomnia aggravation. After Bonferroni correction, partial correlation analyses within insomnia group showed that ODI in left SLF was positively correlated with Pittsburgh sleep quality index (PSQI), insomnia severity index (ISI), and self-rating anxiety scale (SAS) scores; ODI in the left PTR was positively correlated with PSQI and ISI scores. This study is a continuation of our previous research, which provided potential biomarkers for COVID-19-induced insomnia.

New Dizziness Impact Measures of Positional, Functional, and Emotional Status Were Supported for Reliability, Validity, and Efficiency

ObjectiveTo calibrate the 25 items from the Dizziness Handicap Inventory (DHI) patient-reported outcome measure (PROM), using item response theory (IRT), into 1 or more item banks, and assess reliability, validity, and administration efficiency of scores derived from computerized adaptive test (CAT) or short form (SF) administration modes. DesignRetrospective cohort study. SettingOutpatient rehabilitation clinics. ParticipantsPatients (N=28,815; women=69%; mean age [SD]=60 [18]) included in a large national dataset and assessed for dizziness-related conditions who responded to all DHI items at intake. InterventionsNot applicable. Main Outcome MeasuresIRT model assumptions of unidimensionality, local item independence, item fit, and presence of differential item functioning (DIF) were evaluated. Generated scores were assessed for reliability, validity, and administration efficiency. ResultsPatients were treated in 976 clinics from 49 US states for either vestibular-, brain injury-, or neck-related impairments. Three unidimensional item banks were calibrated, creating 3 distinct PROMs for Dizziness Functional Status (DFS, 13 items), Dizziness Positional Status (DPS, 4 items), and Dizziness Emotional Status (DES, 6 items). Two items did not fit into any domain. A DFS-CAT and a DFS 7-item SF were developed. Except for 2 items by age groups and 1 item by main impairment, no items were flagged for DIF; DIF impact was negligible. Median reliability estimates were 0.91, 0.72, and 0.79 for the DFS, DPS, and DES, respectively. Scores discriminated between patient groups in clinically logical ways and had a large effect size (>0.8), with acceptable floor and ceiling effects (<15%), except for a floor effect for DPS (20.4%). DFS-CAT scores were generated using a median of 8 items; they correlated highly with full-bank scores (r=0.99). ConclusionThe 3 dizziness impact PROMs demonstrated moderate to high reliability, were valid, and highly responsive to change; thus, they are suitable for research and routine clinical administration.

Toward an Understanding of GSD5 (McArdle disease): How Do Individuals Learn to Live with the Metabolic Defect in Daily Life.

Glycogen storage disease type 5 (GSD) is an autosomal recessive inherited metabolic myopathy caused by a deficiency of the enzyme muscle glycogen phosphorylase. Individuals with GSD5 experience physical activity intolerance. This patient-led study aimed to capture the daily life experiences of GSD5, with a focus on adapting to and coping with their physical activity intolerance. An online survey was composed in close collaboration with patient organizations. It consisted of customized and validated questionnaires on demographics, general health and comorbidities, physical activity, psychosocial well-being and functioning, pain, fatigue and adapting to and coping with GSD5. One hundred sixty-two participants (16 countries) participated. The majority, n = 86 (69%) were from the Netherlands, USA or UK. We observed a high rate of misdiagnosis prior to GSD5 diagnosis (49%), surprisingly a relatively high proportion had not been diagnosed by DNA testing which is the gold standard. Being diagnosed had a strong impact on emotional status, daily life activities and important life choices. A large proportion had not received any rehabilitation (41%) nor medical treatment (57%) before diagnosis. Engagement in vigorous and moderate physical activity was reduced. Health related quality of life was low, most likely related to low physical health. The median Fatigue Severity Score was 4.3, indicating moderate to severe fatigue. Participants themselves had found various ways to adapt to and cope with their disability. The adaptations concerned all aspect of their life, including household chores, social and physical activities, and work. In addition to lack of support, participants reported limited availability of information sources. Participants have provided guidance for newly diagnosed people, including the advice to accept one's limited abilities and maintain an active lifestyle. We conclude that adequate counseling on ways of adapting and coping is expected to increase both health-related quality of life and physical activity.

Components of self-awareness affecting caregiver burden: a long-term follow-up study

ABSTRACT Objective Studies utilizing the discrepancy model of the Mayo-Portland Adaptability Inventory-4 (MPAI-4) have commonly used the cognitive and physical domains to estimate self-awareness. This study included other aspects of self-awareness such as awareness of one’s social and emotional status and daily functioning to explore their effects on caregiver burden for ABI survivors. Methods We studied 64 patient-caregiver pairs up to 29 years post-discharge from a holistic, milieu-oriented outpatient neurorehabilitation program. Discrepancy scores between ABI survivors’ and caregivers’ reports on the MPAI-4 subscales (i.e. Abilities, Adjustment, and Participation) and Total Score were used to determine self-awareness. Caregiver burden was measured using the Zarit Burden Interview (ZBI). Results Exploratory linear regression analyses revealed that caregiver burden derived from the ZBI was predicted by the discrepancy scores generated from the Abilities (p < 0.0001), Adjustment (p < 0.01), Participation subscales (p = 0.01), and Total Score (p < 0.001), respectively. Among the exploratory models generated, the Total Score model had the highest predictive value (R2 = .33) for caregiver burden. Conclusions Measures of self-awareness should be comprehensive by considering diverse components of self-awareness. Increasing ABI survivors’ self-awareness in different domains has the potential to effectively alleviate caregiver burden.