Assistance In Daily Life Research Articles

성인 발달장애인의 평생교육 참여에 영향을 미치는 요인에 관한 분석

Purpose: This study utilized the raw data from the 2020 Disability Status Survey conducted by the Korea Institute for Health and Social Affairs to analyze the factors affecting the participation of adults with developmental disabilities in lifelong education. Methods: These factors were categorized into demographic, health, psychological, and social activity aspects. A logistic regression analysis was conducted with lifelong education participation as a dependent variable and the influencing factors as independent variables. Results: The findings are as follows. First, in the health aspect, higher subjective health status and lower need for assistance in daily life were associated with increased participation in lifelong education. Second, in the social activity aspect, previous experience in lifelong education, leisure activities, and use of welfare centers were found to enhance participation. Third, psychological factors did not significantly influence the participation of adults with developmental disabilities in lifelong education. Conclusions: Based on these results this study proposes practical and policy measures to enhance lifelong education participation among adults with developmental disabilities. These include developing health-related programs, promoting autonomous living in daily life, encouraging participation in leisure activities rather than formal education, expanding lifelong education institutions beyond welfare centers, and creating more opportunities for participation in lifelong education.

ADDRESSING PROSOCIAL DEFICITS: A COMPREHENSIVE INTERVENTION FOR CHILDREN IN A SOCIAL WELFARE HOME - A CASE STUDY AT UPT PSPA PEKANBARU, RIAU

This report presents an assessment and intervention plan aimed at addressing low prosocial behaviour among children residing at the Unit Pelaksana Teknis Panti Sosial Pengasuhan Anak (UPT PSPA), a social welfare home established in 2016 in Pekanbaru, Riau Province, Indonesia. The UPT PSPA serves as a haven for orphans, underprivileged children, and those facing various socio-economic challenges. Their honesty and empathy have become a constant concern, which may affect their daily behaviour as an individual and in a group. As a qualitative research method, the assessment phase involved a combination of interviews and participant observations conducted over the course of several weeks. The Respondents are all the Children (37 children) at UPT PSPA. Using the description analysis of the data results, the finding revealed a significant lack of prosocial behaviours, including honesty, empathy, and helping others, among the children. Instances of lying, bullying, and reluctance to assist peers were frequently observed. These behaviours prompted the need for intervention to foster prosocial behaviours and emotional intelligence. The intervention plan consisted of group counselling sessions and psychoeducation. The counselling sessions aimed to instil the values of honesty, gratitude, empathy, and mutual assistance in daily life. The psychoeducation component emphasized the importance of prosocial behaviour, including the use of “please”, “thank you”, and “I’m sorry” in interactions with others. Following the intervention, a post-assessment was conducted to evaluate changes in the children’s behaviours. While improvements were observed in some children, challenges remained, particularly with those who continued to engage in dishonesty due to fear of punishment or a desire for attention. In conclusion, this report highlights the importance of addressing prosocial behaviour deficits among children in social welfare homes. It underscores the need for ongoing efforts to nurture these behaviours, given their significance in promoting healthy social interactions and personal development. Future interventions will explore additional strategies to further enhance prosocial behaviours in the context.

Longitudinal Association Between Perceived Availability of Home- and Community-Based Services and All-Cause Mortality Among Chinese Older Adults: A National Cohort Study

ABSTRACT Home- and community-based services (HCBS) may contribute to lowering mortality and enhancing quality of life among older adults. Limited research, however, has examined this relationship in the Chinese context. This study explored the longitudinal association between perceived availability of HCBS and all-cause mortality among Chinese older adults. This cohort study included 8,102 individuals aged 65 years and older from the 2011, 2014, and 2018 waves of the Chinese Longitudinal Healthy Longevity Survey. HCBS included daily life assistance, medical care services, emotional support and social services, and reconciliation and legal aid services. The association between perceived availability of HCBS and all-cause mortality was investigated using Cox proportional hazards models. Emotional support and social services were negatively associated with all-cause mortality (HR = 0.86, 95% CI: 0.78 ~ 0.95, P = .004). Daily life assistance, medical care services, and reconciliation and legal aid services were not significantly associated with all-cause mortality. Providing community-level emotional support and social services may reduce the risk of death. Focusing on the mental health and social well-being of older adults is just as important as caring for their physical health.

Spiritual and religious perspectives in persons with visual impairment due to age-related macular degeneration.

Age-related macular degeneration (AMD) is one of the global leading causes of severe vision loss. Patients suffering from AMD face complex spiritual and mental challenges that have an impact on the course of their disease, their quality of life, and their relationship with their surroundings. A survey was carried out using a 21-item questionnaire between August 2020 and June 2021 among 117 patients from different countries to investigate how spirituality, religion, and their way of practicing them affected the experiences and daily lives of patients suffering from AMD, and whether it helped them cope with the disease. Our study concluded that spirituality and religion are important factors that facilitate patients' ability to cope with a progressive degenerative disease such as AMD. Patients who are religious are more at peace with having AMD. Practices that contribute to patients being at peace in accepting the disease are regular prayers or meditation. Spirituality and religion are important components that promote a healthier and happier emotional state and mental wellbeing. In particular, by believing that death is not the end, patients feel more hopeful, which helps in their adjustment to a seemingly hopeless health condition. A significant number of AMD patients desire to talk about God with the medical staff. The profile of such patients could be those believing in a higher power, praying often, participating in religious services, being worried about the loss of vision, and needing assistance in daily life. An interdisciplinary and multidimensional team of medical health professionals including mental health workers and chaplains can be of great value in managing persons with AMD.

A Rare Mutation Associated with Cerebral Arteriopathy with Subcortical Infarct and Leukoencephalopathy (CADASIL) (P2-5.002)

<h3>Objective:</h3> To report a rare cause of CADASIL with a point mutation in exon 5 of NOTCH 3 gene causing a non-cysteine change and its implication. <h3>Background:</h3> CADASIL is a rare genetic non-amyloid arteriopathy primarily affecting small brain vessels. Its prevalence in population is 2 to 5/100,000, but may be underestimated and underdiagnosed. Although there is over 200 different NOTCH-3 mutations described worldwide, 95% of them are missense mutation in the exons 2–24, which leads to a gain or loss of a cysteine residue in one of 34 epidermal growth factor-like repeat (EGFr) domains of the NOTCH3 protein. Non-cysteine mutations are rare and their role is not well determined. <h3>Design/Methods:</h3> Case report <h3>Results:</h3> 58-year-old man with a three-year progressive cognitive decline, history of headaches, fatigue, and generalized weakness was admitted to the neurology wards for worsening weakness and increased need for assistance in daily life. Neurological exam was significant for mild left hemiparesis. MoCA score was 19/30. Brain MRI showed one subacute and numerous chronic lacunar ischemic strokes including in the corpus callosum, also seen on previous outpatient MRIs. These changes had been attributed to demyelinating disease by the outpatient physician. An extensive workup including autoimmune was unrevealing. Classical leukoencephalopathy was not present, but hyperintensities in the temporal lobe raised concern for CADASIL. DNA sequencing revealed a non-cysteine mutation with c.754 G&gt;A transition in exon 5 of NOTCH 3 gene resulting in a substitution of Valine to Methionine (V252M). This is the second case of this mutation reported in the literature. Non-cysteine mutation may affect NOTCH-3 signaling output and possibly lead to a milder leukoencephalopathy and extensive involvement of corpus callosum with lacunar infarctions resembling demyelinating disease. <h3>Conclusions:</h3> CADASIL with a point mutation in exon 5 of NOTCH 3 gene causing a non-cysteine change may present with milder disease and not classical MRI changes. <b>Disclosure:</b> Dr. Delpirou Nouh has nothing to disclose. Dr. Mahmoud has nothing to disclose. Juliane Chainakul has nothing to disclose. Robert Hamilton has nothing to disclose. Dr. Sidorov has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Allergan. Dr. Sidorov has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for BioHaven .

Review of Supernumerary Robotic Limbs

Supernumerary robotic limbs (SRLs) are the expansion of human body. It can provide extra limbs to enhance human ability. It is a novel way to assist the existing limbs using SRLs without prejudice to the normal activities of the user’s arm. It has great application prospects in the fields of military, industry, rehabilitation training and assistance in daily life. Based on the public research results of SRLs around the world, the development state of SRLs are summarized from the mechanical architecture, actuation mode, motion intention prediction and control strategy. The technical problems for SRLs are analyzed and their future technical development is given.

The burden of caregivers of schizophrenia outpatients during the COVID-19 pandemic: A same-sample comparison with the pre-pandemic burden.

The coronavirus disease 2019 (COVID-19) has affected the vulnerable Brazilian population. In this study, we investigated the burden of COVID-19 on caregivers for patients with schizophrenia. This study assessed objective and subjective burden of caregivers for patients with schizophrenia during the COVID-19 pandemic and compared the measurements obtained in the study to that before the pandemic. The study included 50 caregivers who were assessed using the Sociodemographic Questionnaire, and the Family Burden Interview Schedule, Brazilian version (FBIS-BR). An adaptation of the Clinical Global Impression-Improvement (CGI-I) was made, in which caregivers evaluated their 'clinical' impression about the patient during the COVID-19 pandemic in comparison to pre-pandemic mental status. Most caregivers were female, aged between 24 and 80 years, who were in contact with the patient for about 88.56 hours/week. In relation to caregiver burden, there was a significant increase in the total subjective burden (p < .001), but not in the total objective burden. The following subjective domains of the burden showed a significant increase: assistance in daily life (p < .001) and worries about patients' present and future life (p = .033). There was a decrease in the objective burden related to supervision of patients' problematic behaviors (p = .031). Although the caregiver's income did not change significantly during the COVID-19 pandemic, there was an increase in the percentage of caregivers who perceived the frequency of financial burden imposed by the patient as 'very frequent' and 'always or almost always'; conversely there was a significant decrease in the subjective perception of the caregiver that the patient imposed financially 'no burden' or a 'seldom burden' (from 34% to 4%). Although the objective burden of the caregivers, during the pandemic, was similar the pre-pandemic levels, caregivers' subjective burden increased reinforcing the need for special attention to the caregiver in this global emergency.

MRCPs-and-ERS/D-Oscillations-Driven Deep Learning Models for Decoding Unimanual and Bimanual Movements.

Motor brain-computer interface (BCI) can intend to restore or compensate for central nervous system functionality. In the motor-BCI, motor execution (ME), which relies on patients' residual or intact movement functions, is a more intuitive and natural paradigm. Based on the ME paradigm, we can decode voluntary hand movement intentions from electroencephalography (EEG) signals. Numerous studies have investigated EEG-based unimanual movement decoding. Moreover, some studies have explored bimanual movement decoding since bimanual coordination is important in daily-life assistance and bilateral neurorehabilitation therapy. However, the multi-class classification of the unimanual and bimanual movements shows weak performance. To address this problem, in this work, we propose a neurophysiological signatures-driven deep learning model utilizing the movement-related cortical potentials (MRCPs) and event-related synchronization/ desynchronization (ERS/D) oscillations for the first time, inspired by the finding that brain signals encode motor-related information with both evoked potentials and oscillation components in ME. The proposed model consists of a feature representation module, an attention-based channel-weighting module, and a shallow convolutional neural network module. Results show that our proposed model has superior performance to the baseline methods. Six-class classification accuracies of unimanual and bimanual movements achieved 80.3%. Besides, each feature module of our model contributes to the performance. This work is the first to fuse the MRCPs and ERS/D oscillations of ME in deep learning to enhance the multi-class unimanual and bimanual movements' decoding performance. This work can facilitate the neural decoding of unimanual and bimanual movements for neurorehabilitation and assistance.

Trajectories and determinants of emergency department use among nursing home residents: a time series analysis (2012–2019)

BackgroundEmergency department (ED) use among nursing home (NH) residents is an internationally-shared issue that is understudied in Italy. The long term care in Italy is part of the health system. This study aimed to assess trajectories of ED use among NH residents and determinants between demographic, health supply, clinical/functional factors.MethodsA pooled, cross-sectional, time series analysis was performed in an Italian region in 2012/2019. The analysis measured the trend of ED user percentages associated with chronic conditions identified at NH admission. A GLM multivariate model was used to evaluate determinants of ED use. The variables collected were sex, age, assistance intensity, destination after discharge from NH, chronic conditions at NH admission, need for daily life assistance, degree of mobility, cognitive impairments, behavioural disturbances and were taken from two databases of the official Italian National Information System (FAR and C2 registries) that were combined to create a unique and anonymous code for each patient.ResultsA total of 37,311 residents were enrolled; 55.75% (20,800 residents) had at least one ED visit. The majority of the residents had cardiovascular (25.99%) or mental diseases (24.37%). In all pathologies, the percentage of ED users decreased and the decrease accelerated over time. These results were confirmed in the fixed effects regression model (coefficient for linear term (b = − 3.6177, p = 0, 95% CI = [− 5.124, − 2.1114]); coefficient for quadratic term = − 0.7691, p = 0.0046, 95% CI = [− 1.2953, − 0.2429]). Analysis showed an increased odds of ED visits involving males (OR = 1.27, 95% CI 1.24;1.30) and patients affected by urogenital diseases (OR = 1.16, 95% CI [1.031–1.314]). The lowest odds of ED visits were observed among subjects aged > 90 years (OR = 0.64, 95% CI [0.60–0.67]), who required assistance for their daily life activities (OR = 0.86; 95% CI = [0.82, 0.91]), or with serious cognitive disturbances (OR = 0.86; 95% CI = [0.84, 0.89]), immobile (OR = 0.93; 95% CI = [0.89, 0.96]), or without behavioural disturbances (OR = 0.92; 95% CI = [0.90, 0.94]).ConclusionsThe percentage of ED users has decreased, through support from the Italian disciplinary long-term care system. The demographic, clinical/functional variables associated with ED visits in this study will be helpful to develop targeted and tailored interventions to avoid unnecessary ED use.

Factors associated with caregiver burden of adults with epilepsy in a middle-income country

PurposeDespite the relevance of socio-economic background in burden of caregivers of persons with epilepsy (PWE), there is a dearth of knowledge about this topic in low-resource settings. Here we attempt to identify the extent of the burden in caregivers of adults with epilepsy in a middle-income country and the factors associated with it. MethodsIn this cross-sectional study, we evaluated the level of burden with the Zarit Caregiver Burden Inventory. A comprehensive questionnaire was developed to assess the demographics of patients and caregivers. Epilepsy-related factors were obtained by interview and file review. Depressive, anxiety symptoms, and sleep quality were evaluated by Beck Depression Inventory, State and Trait Anxiety Inventory, and Pittsburgh Sleep Quality Index. Stigma was evaluated by the Stigma Scale of Epilepsy. ResultsThe caregiver's burden was mild to moderate in our sample. The factors most strongly associated with the higher caregiver burden were age-onset of epilepsy, PWE years of schooling, needs for assistance in daily life, disabilities, and caregiver's bad-quality of sleep and higher depressive and anxiety symptoms. ConclusionCaregivers of PWE deserve special attention regarding mental health and other health aspects, such as sleep quality.

Perceived availability of home- and community-based services and self-reported depression among Chinese older adults: A cross-sectional study.

Few studies have assessed the association between perceived availability of home- and community-based services (HCBSs) and self-reported depression among Chinese older adults, which the present study attempts to rectify. This cross-sectional study enrolled 11,941 participants aged 65 and older from the Chinese Longitudinal Healthy Longevity Survey 2018 wave. The 10-item Center for Epidemiologic Studies Depression Scale (CESD-10) was used to evaluate depression, and perceived availability was measured for four categories of HCBSs: daily life assistance, medical care services, emotional support and social services, and other. These four categories and the number of services in each were used to represent the perceived availability of service provision. Binary logistic models were used to explore the relationship between perceived availability of HCBSs and depression in older adults. Perceived daily life assistance was found to be negatively associated with depression symptoms among Chinese older adults in both urban and rural areas [rural: OR (95%CI)=0.66 (0.55-0.78), p<0.001; urban: OR (95% CI)=0.69(0.60-0.79), p<0.001], while perceived levels of medical care services, emotional support and social services, and other were not associated with depression symptoms in rural or urban areas. Our primary finding was that providing daily life assistance at the community level may help to meet more older adults' daily needs, thus potentially decreasing the risk of depression.

Analysis of Smart Home Technology Acceptance and Preference for Elderly in Dubai, UAE

The elderly are the most predicted users for smart home technology in the United Arab Emirates and the population over 65 is expected to increase to 24.3% by 2030. Despite the rapid development of smart home technology, research has been mainly focused on technology development. To encourage conservative elderly users, however, smart home technology should be implemented for UAE elderly users to accept and integrate it into their daily lives. The objective of this paper is to analyze the preferences and needs of smart home technologies to understand the behaviors of UAE elderly users, and the factors affecting the acceptance of technology. As a methodology, a survey and interview were conducted for 110 people in their 40s and 60s and a total of 105 valid survey responses were collected and used as data for frequency, mean, cross-analysis, independent sample t-test, one-way variance analysis, and multiple regression analysis with IBM SPSS statistics 27. The results showed that 67.0% of UAE elderly users have chronic diseases such as high blood pressure (16.2%), heart disease (3.8%), diabetes (32.4%), or arthritis (10.5%). Therefore, smart home technology for health management is inevitable to improve overall lifestyles. It was statistically proven that UAE elderly users want automatic fall detection in the living room (39.0%) and bedroom (25.7%). Lifestyle monitoring in living room (44.7%) and bedroom (18.1%); the elderly preferred living room most for daily life assistance (36.2%), environmental control (50.5%), health and biometric monitoring (49.5%), and video conferencing (82.9%). In the case of sensors, elderly preferred the switch at the entrance (36.2%), and motion detecting sensors (42.9%), video cameras (56.2%), and voice recognition (50.5%) sensors in the living room. However, UAE elderly users do not think smart home technology can protect their privacy. It is found that age group and computer technology affinity are the most influential variables and UAE elderly users have an anxiety about technology, which influenced the acceptance of smart home technology.

Existing apartment buildings as a spatial reserve for assisted living

PurposeAgeing populations induce needs to adapt existing housing. With ageing, the number of frail old people, who require assistance in daily life, is also increased. Converting existing housing into assisted living enables them to remain in their community while receiving necessary support and care. The purpose is to investigate whether post-war mass housing is spatially appropriate for adaptation into group homes for older people.Design/methodology/approachThe research material is attained from Finland. Spatial requirements for group homes are drawn from 130 units built or renovated during 2000–2015. Spatial characteristics of mass housing are mapped from 105 apartment buildings built in the 1970s. The latter are matched with the former by comparing the connectivity of layouts, sizes of units and the numbers and sizes of individual spaces.FindingsGroup homes typically utilize a linear layout, which can easily be created in apartment buildings. Individual spaces of a group home fit apartment buildings effortlessly. Whole group home units mostly prove to be spatially feasible but result in looser dimensioning than is typical in existing units. The mass housing stock can be considered a spatial reserve for adaptation into group homes.Originality/valueThis is the first study to employ a large-scale, multi-case spatial mapping approach to analyse the adaptability properties of mass housing into assisted living. The findings pertain primarily to the Finnish context, but a methodology is presented which can be applied to other countries and also to other spatial functions.

Research on Home-Auxiliary Robot System Based on Characteristics of Human Physiological and Motion Signals

A home-auxiliary robot system based on characteristics of the electrooculogram (EOG) and tongue signal is developed in the current study, which can provide daily life assistance for people with physical mobility disabilities. It relies on five simple actions (blinking twice in a row, tongue extension, upward tongue rolling, and left and right eye movements) of the human head itself to complete the motions (moving up/down/left/right and double-click) of a mouse in the system screen. In this paper, the brain network and BP neural network algorithms are used to identify these five types of actions. The result shows that, for all subjects, their average recognition rates of eye blinks and tongue movements (tongue extension and upward tongue rolling) were 90.17%, 88.00%, and 89.83%, respectively, and after training, the subjects can complete the five types of movements in sequence within 12 seconds. It means that people with physical disabilities can use the system to quickly and accurately complete life self-help, which brings great convenience to their lives.

Examining attitudes toward mutual support in daily life and their associated factors within a community-based integrated care system: Findings of the "Survey to Enrich the Lives of Miyamae Ward Residents"

Objectives This study aimed to examine current relationships with neighbors among city dwellers and determine the factors associated with providing and accepting support in daily life.Methods The "Survey to Enrich the Lives of Miyamae Ward Residents" was conducted with 1,000 people aged ≥30 years residing in Miyamae Ward, Kawasaki City. The survey items included baseline characteristics (e.g., sex, age, and residential status), relationships with neighbors, inclination to share personal information, and inclination to provide/accept support for the instrumental activities of daily living (IADL). To identify the factors associated with providing and accepting support for IADL, logistic regression analyses were performed with the following independent variables: baseline characteristics, neighborly relationships, inclination to share personal information, and inclination to provide support for the IADL.Results We analyzed 407 respondents with complete responses. Among the different levels of neighborly relationships, 11.8% of the respondents were "cooperative with neighbors in daily life," 33.3% would "only stand and talk," 46.0% would "only exchange greetings," and 9.0% had "no relationships with neighbors." Among those willing to provide support, the highest proportions of responses were for "Calling on/watching over others" (60.1%) and "Helping to throw out garbage" (51.7%). In contrast, less than 30% of respondents were willing to seek support from neighbors and volunteers for these two activities. The factors significantly associated with a willingness to provide support were women and relationships with neighbors at the "stand and talk" level or higher. A disinclination to share personal information was inhibitory to providing support. The factors significantly associated with a willingness to accept support were women and the inclination to provide support according to IADL. Home ownership was inhibitory to accepting support.Conclusion Fixed residential status and longer residence durations did not necessarily contribute to closer relationships with neighbors in urban areas. Although the respondents generally only exchanged greetings with neighbors, closer relationships are needed to facilitate a willingness to provide support to others. While many respondents were willing to provide simple assistance in daily life, rather fewer would seek help for the same activities. However, the acceptance of support was associated with the inclination to provide support, indicating a correlation between these two attitudes. In order to further encourage mutual support in daily life in urban areas, it is necessary to not only improve the level of relationships with neighbors, but also to implement initiatives that increase opportunities for people to gain experience providing support.

Thoughts of Expert Nurses About Daily Life Assistance of Terminally-Ill Cancer Patients Considering Safety and Comfort

Thoughts of Expert Nurses About Daily Life Assistance of Terminally-Ill Cancer Patients Considering Safety and Comfort

Maintaining health-related quality of life from 85 to 93 years of age despite decreased functional ability

Introduction The ‘oldest-old’ is the most rapidly growing age group in Sweden and in the western world. This group is known to be at great risk of increased functional dependency and the need for help in their daily lives. The aim of this research was to examine how the oldest-old change over time regarding health-related quality of life, cognition, depression and ability to perform activities of daily living and investigate what factors explain health-related quality of life at age 85 and 93 years. Methods In this study, 60 individuals from the Swedish Elderly in Linköping Screening Assessment study were followed from age 85 to 93 years. Measurements used were EQ-5D, Geriatric Depression Scale, Mini Mental State Examination and ability to perform activities of daily living. Nonparametric statistics and regression analyses were used. Results Although the individuals had increased mobility problems, decreased ability to manage activities of daily living, and thus had increased need of assistance, they scored their health-related quality of life at age 93 years at almost the same level as at age 85 years. No depression and low dependence in activities of daily living speaks in favour of higher health-related quality of life. Conclusions Health-related quality of life can be maintained during ageing despite decreased functional ability and increased need of assistance in daily life.

Implementing self adaptiveness in whale optimization for cluster head section in Internet of Things

With ample technological developments and flourishing demand for digital assistance in daily life and work environments that goes along with it, technologies are required to derive this application domain to the subsequent level. Internet of Things (IoT) is considered as one of vision for such technologies. This paper intends to develop self adaptive whale optimization algorithm (SAWOA) for the accomplishment of energy-aware cluster head selection and clustering protocols under wireless sensor network (WSN)—based IoT. Along with the parameters like energy, distance, and delay of sensor nodes in WSN, this simulation considers both load and temperature of IloT devices. After modeling the simulation, it carries out a valuable performance analysis in terms of network efficiency, normalized energy and load and temperature of the selected cluster head. The performance analysis compares the effectiveness of proposed SAWOA over traditional artificial bee colony (ABC), genetic algorithm (GA), particle swarm optimization (PSO), gravitational search algorithm (GSA), adaptive GSA (AGSA) and WOA-based cluster head selection models. The outcome from simulation model proves the successful performance of SAWOA in cluster head selection so that the lifetime of network is prolonged.

Survival analysis of a cohort of Chinese patients with mitochondrial encephalomyopathy with lactic acidosis and stroke-like episodes (MELAS) based on clinical features

BackgroundMitochondrial encephalomyopathy with lactic acidosis and stroke-like episodes (MELAS) is a common mitochondrial syndrome. The aim of this study was to conduct a survival analysis based on the clinical features of a Chinese MELAS patient cohort. MethodsThis is a retrospective single-center study. The MELAS patients were followed up for 1–8years (median 4years). The disease severity was evaluated by the modified Rankin Scale (mRS). The survival analysis was performed using Kaplan-Meier analysis and Cox proportional hazards model. ResultsA total of 138 subjects were enrolled, and the median disease duration was 7years [interquartile range (IQR) 4–11years]. The stroke-like episodes were the most common initial symptoms (70.3%). Seventeen (17.3%) subjects lost to follow-up. Of the 121 subjects who successfully completed the follow-up, 28 subjects died (mortality rate 23.1%). An acute stroke-like episode and/or status epilepticus were the predominant causes of death (42.9%). Among the surviving patients (n=93), 39.8% (37/93) required assistance in daily life (mRS scores 3–5). The mRS scores were inversely correlated with the age of onset (r=−0.28, P=0.0022) but not with the disease duration (r=0.10, P=0.2709). The survival rate declined mainly within 12years after the disease onset. The stroke-like episode as the initial symptom was an independent risk factor for death (hazard ratio=2.86, 95% CI 1.03–7.94, P=0.043). ConclusionsMELAS had high mortality and morbidity in this cohort of Chinese patients. The early onset of stroke-like episodes might indicate the more severe form of the disease, highlighting the importance of management of stroke-like episodes to improve the prognosis.

Treatment of age-related neovascular macular degeneration: the patient\u2019s perspective

ObjectivesThe aim of this study was to assess patients’ views and expectations with regard to neovascular age-related macular degeneration (nAMD) and intravitreal anti-VEGF therapy (IVT).MethodsWe conducted a multicenter, non-interventional, prospective cohort study including nAMD patients treated with IVT in Germany. Patients with at least one IVT before study enrollment and aged ≥50 years were included. Three telephone interviews were conducted during a 12-month observational period. Here, patient’s beliefs/expectations with regard to the nAMD disease and the IVT treatment were discussed. Only patients who completed all three phone interviews were included in the analyses. We used a two-step cluster analysis to identify patient clusters regarding specific patient attitudes towards nAMD and its treatment.ResultsThree hundred and thirty-two patients completed all interviews (mean age of 76.4 ± 7.2 years, 59.0% women). Out of these, 57.8% acknowledged that they needed general assistance in daily life, while 77.4% stated being able to attend general medical appointments on their own. However, 64.7% needed a driver or an accompanying person to attend their IVT appointments.In addition, 3.9% of the patients were afraid of IVT side effects. Also, 87.3% and 43.1% of the patients could name their disease or the anti-VEGF drug administered, respectively. More than three-quarters of the patients (83.1%) were aware of possible consequences of nAMD by stating vision loss or blindness, but only 16.6% knew that nAMD is a chronic disease.Generally, patients were optimistic: 70.2%, 5.1% and 13.0% of them expected stable visual acuity (VA), a significant improvement or expected worsening of VA in the next year, respectively. Almost two thirds of patients who provided their therapy expectations (47.0%) anticipated fewer injections/discontinuation of IVT.We identified five patient clusters differing significantly from each other with regard to four variables: being afraid of IVT, nAMD disease awareness, optimism with regard to effectiveness of IVT, and nAMD disease and treatment knowledge.ConclusionsOnly a minority of patients is aware of the chronic nature of nAMD. To motivate patients to accept a life-long IVT treatment, physicians and caregivers must know that there exist different patient types with significant differences in communication needs.