Survey Of Caregivers Research Articles

248.12: Critically Important Outcomes for Infection in Trials in Kidney Transplantation: An International Survey of Patients, Caregivers and Health Professionals

Background: Infections are a common complication following kidney transplantation, but are reported inconsistently in clinical trials. This study aimed to identify the infection outcomes of highest priority for patients/caregivers and health professionals to inform a core outcome set to be reported in all kidney transplant clinical trials. Methods: In an international online survey, participants rated the absolute importance of 16 infections and 8 severity dimensions on 9-point Likert Scales, with 7-9 being critically important. Relative importance was determined using a best-worst scale. Means and proportions of the Likert-scale ratings and best-worst preference scores were calculated. Results: 353 healthcare professionals (19 who identified as both patients/caregiver and healthcare professionals) and 220 patients/caregivers (190 patients, 22 caregivers, 8 who identified as both) from 55 countries completed the survey. Both healthcare professionals and patients/caregivers rated bloodstream (mean 8.4 and 8.5 respectively; aggregate 8.5), kidney/bladder (mean 7.9 and 8.4; aggregate 8.1) and BK virus (mean 8.1 and 8.6; aggregate 8.3) as the top 3 most critically important infection outcomes, whilst infectious death (mean 8.8 and 8.6; aggregate 8.7), impaired graft function (mean 8.4 and 8.7; aggregate 8.5) and admission to the intensive care unit (mean 8.2 and 8.3; aggregate 8.2) were the top 3 severity dimensions. Relative importance (best-worst) scores were consistent. Conclusions: Healthcare professionals and patients/caregivers consistently identified bloodstream infection, kidney/bladder infections and BK virus as the three most important infection outcomes, and infectious death, admission to intensive care unit and infection impairing graft function as the three most important infection severity outcomes.

Acceptance and commitment improve the work-caregiving interface among dementia family caregivers.

Although working dementia family caregivers experience negative (i.e., work-family conflict; WFC) and positive (i.e., work-family enrichment; WFE) aspects of balancing work and caregiving, little is known about factors that alleviate negative aspects and enhance positive aspects of the work-caregiving interface. The purpose of this study was to examine the moderating effect of acceptance and commitment to personal values, which are transdiagnostic in nature and key concepts of acceptance and commitment therapy, on the relationships between work/caregiving demands and WFC and between work/caregiving resources and WFE among working dementia family caregivers. Data were drawn from a three-wave 6-month interval longitudinal survey of Japanese working dementia family caregivers (N = 747). Hierarchical linear modeling was used to examine the main effect of acceptance and commitment to personal values on WFC/WFE, and their moderating effect on relationships between work/caregiving demands and WFC, and work/caregiving resources (job control, supervisor/coworker support, organizational support, caregiving support) and WFE. Acceptance was negatively associated with WFC and weakened the positive relationship between work/caregiving demands and WFC. Commitment to personal values was negatively associated with WFC and positively associated with WFE. Commitment to personal values weakened the positive relationships between work/caregiving demands and WFC and moderated the relationship between caregiving support and WFE. The findings suggest that acceptance may be effective in alleviating WFC and commitment to personal values contributes to alleviating WFC and increasing WFE. Acceptance and commitment therapy may help to improve the work-caregiving interface among dementia family caregivers. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Factors associated with self-medication of antibiotics by caregivers in pediatric patients attending the emergency department: a case-control study

IntroductionAntibiotic self-medication is a common practice in pediatric caregivers in low-income countries with limited resources and represents a public health problem. Our study sought to determine what factors are associated with this practice, including differences in knowledge or attitudes of caregivers who attend a pediatric emergency service.MethodsCase-control study based on surveys of caregivers of pediatric patients brought to the emergency room with clinical symptoms suggestive of acute infection. Cases were defined as those caregivers who reported self-medication of antibiotics for the current illness and controls where those who did not report self-medication. Information was collected through a self-administered questionnaire that inquired about demographic and family characteristics, attitudes and knowledge toward self-medication of antibiotics. Data were compared using logistic regression and are presented with odd ratios and confidence intervals.ResultsA total of 728 caregivers, 182 cases and 546 controls were included. We found that higher parental education, both in mothers (OR 0.56, 95% CI 0.40-0.79) and fathers (OR 0.62, 95% CI 0.43-0.89) was associated with less self-medication. Attitudes such as always requesting antibiotics from their doctors (OR 3.92, 95% CI 1.59-9.66), frequently buying antibiotics without a prescription (OR 23.66, 95% CI 11.76-47.59) and giving advice on antibiotics among family members (OR 2.90, 95% CI 1.75-4.82) resulted in an increased likelihood of self-medication. There was also a higher probability of antibiotic self-medication in older children (OR 1.13, 95% CI 1.09-1.17), those with a greater number of siblings (OR 1.25, 95% CI 1.09-1.43) and in those cases that received antibiotics within the last 3 months (OR 6.27, 95% CI 4.35-9.04). Overall knowledge of risk of antibiotic self-medication was low.ConclusionsSome patient and family characteristics such as age, number of siblings, recent antibiotic usage and inappropriate attitudes are strongly related to antibiotic self-medication. These findings will inform future interventions to reduce self-medication in children.

Counseling Tobacco Smoke Exposure Reduction Measures in Pediatrics: A Quality Improvement Project.

Introduction:With over 40% of children in the USA exposed to tobacco smoke, the AAP recommends tobacco smoke exposure (TSE) assessment during clinic visits. We aimed to increase the rates of TSE screening and provider counseling regarding TSE reduction using an evidence-based approach.Methods:We conducted the project at a large pediatric pulmonology practice. Baseline caregiver surveys and medical record review of TSE documentation took place in July/August, 2019. From September 2019 to July 2021, PDSA cycles were conducted to increase TSE screening and reduce counseling.Results:Before starting the project, 18% of smoking caregivers acknowledged smoking in the home and 41% in the car. While caregivers strongly desired to decrease TSE (median 9.4/10 on Likert scale), physician counseling of TSE reduction was offered only to 44%. PDSA cycles led to refining our patient passport, a document used during patient intake, which increased screening of TSE from 46% to 85%. Creating an educational handout in our electronic record addressing TSE increased TSE reduction counseling from 44% to 80% of children with smokers in the home.Conclusions:Incorporating TSE screening into established nursing documentation of vital signs led to the sustained screening of TSE among children in a pediatric pulmonology practice. Embedding educational material in our electronic record and changes in clinic processes increased TSE reduction counseling. Similar changes could improve rates of counseling caregivers of other guidelines aimed to improve the children’s health.

COVID-19 Vaccination Intentions for Children With Medical Complexity.

The chronic conditions and functional limitations experienced by children with medical complexity (CMC) place them at disproportionate risk for COVID-19 transmission and poor outcomes. To promote robust vaccination uptake, specific constructs associated with vaccine hesitancy must be understood. Our objective was to describe demographic, clinical, and vaccine perception variables associated with CMC parents' intention to vaccinate their child against COVID-19. We conducted a cross-sectional survey (June-August 2021) for primary caregivers of CMC between ages 5 to 17 at an academic medical center in the Midwest. Multivariable logistic regression examined associations between vaccination intent and selected covariates. Among 1330 families, 65.8% indicated vaccination intent. In multivariable models, demographics had minimal associations with vaccination intent; however, parents of younger children (<12 years) had significantly lower adjusted odds of vaccination intent (adjusted odds ratio [95% confidence interval]: 0.26 [0.17-0.3]) compared to parents of older children (≥12 years). CMC with higher severity of illness, ie, those with ≥1 hospitalization in the previous year (versus none) or >1 complex chronic condition (vs 1), had higher adjusted odds of vaccination intent (1.82 [1.14-2.92] and 1.77 [1.16-2.71], respectively). Vaccine perceptions associated with vaccine intention included "My doctor told me to get my child a COVID-19 vaccine" (2.82 [1.74-4.55]); and "I'm concerned about my child's side effects from the vaccine" (0.18 [0.12-0.26]). One-third of CMC families expressed vaccine hesitation; however, constructs strongly associated with vaccination intent are potentially modifiable. Pediatrician endorsement of COVID-19 vaccination and careful counseling on side effects might be promising strategies to encourage uptake.

O-10: SICKLE CELL HEALTH AWARENESS, PERSPECTIVES AND EXPERIENCES (SHAPE) SURVEY: FINDINGS ON THE BURDEN OF SICKLE CELL DISEASE AND UNMET NEEDS AS REPORTED BY PATIENTS AND CAREGIVERS

Purpose: Sickle cell disease (SCD) has a substantial emotional and physical burden on patients and their caregivers. Research on the impact of SCD on patient and caregiver quality of life (QOL) is limited, including on the health inequalities faced by different groups around the world. The limitations in research underscore the need for greater understanding of the challenges of living with SCD in different communities. The SHAPE survey aims to broaden the understanding of the global impact of SCD on patients living with the condition, on caregivers caring for those living with the condition, and on healthcare professionals (HCPs) who treat SCD. Materials and methods: The SHAPE survey comprised online, quantitative surveys of patients, caregivers, and HCPs conducted in 10 countries: France, Germany, UK, US, Canada, Brazil, Saudi Arabia, United Arab Emirates, Bahrain, and Oman (patients only). The surveys required participants to answer a range of closed-ended questions about their circumstances and experiences in order to build a robust and reliable dataset on which descriptive statistics were performed. This analysis focuses on findings from the patient and caregiver survey portion of the study. Patients were included if they were diagnosed with SCD by an HCP and were aged ≥12 years. Caregivers were included if they were caring for someone diagnosed with SCD and were aged ≥18 years. Informed consent was obtained from all participants, and all identifiable information was kept private and secure. The study protocol was reviewed and approved by an independent institutional review board. Results: A total of 919 patients and 207 caregivers completed the survey. The mean patient age was 32.3 years, and most patients and caregivers were female. Nearly all patients stated that reducing the risk of long-term complications, such as organ damage (93%) and hemolytic anemia (84%), was important to them (Figure). Caregivers felt that most areas of their lives—particularly their ability to attend and succeed at school or work (56%) and their own overall wellbeing (53%) and mental health (52%)—were impacted by caring for someone with SCD. The symptom experienced by patients with SCD that most impacted caregivers’ lives was fatigue/tiredness (49%), and 54% of caregivers reported a notable impact on their earning potential. Those caring for patients aged <18 years were more likely to have their ability to attend and succeed at school or work impacted than those caring for patients aged ≥18 years (61% vs 38%, respectively). A total of 46% of patients and 33% of caregivers reported that emergency room (ER) HCPs did not believe patients about their symptoms, and 48% of patients felt they were treated as a drug seeker by ER HCPs. Similarly, 54% of patients and 40% of caregivers reported ER HCPs provided poor care due to their lack of knowledge about SCD. Conclusion: The experience of a global group of patients with SCD shows that what most impacted caregivers’ lives was fatigue/tiredness and loss of earnings and this provides insight on the broad impacts of SCD and highlights areas that need greater support or improvement.Figure. Percentage of Patients or Caregivers Who Agreed With or Endorsed the Following Statements I. ODAME declares a conflict of interest: Consultancy, Expert: Novartis, Novo Nordisk, Global Blood Therapeutics F. COSTA declares a conflict of interest: Consultancy, Expert: Novartis;GBT B. INUSA declares a conflict of interest: Consultancy, Expert: Novartis Ltd Global therapeutics Vertex Agios Invitation to national or international congresses: European Hematology Association Sickle cell disease association of America Mumbai international haematology National blood transfusion Society Nigeria Patent or product inventor: none Research support/Scientific studies: Horizon 2020 ARISE (African Reserach and Innovative Initiative for Sickle cell education) Paget foundation Trainings, Teaching: academy for sickle cell and thalassaemia (ASCAT) W. JASTANIAH declares a conflict of interest: Consultancy, Expert: Novartis, Amgen, Servier Research support/Scientific studies: Novartis, Amgen

Should COVID-19 vaccines be mandated in schools? - an international caregiver perspective

ObjectivesCaregiver attitudes toward mandating COVID-19 vaccines for their children are poorly understood. We aimed to determine caregiver acceptability of COVID-19 vaccine mandates for schools/daycares and assess if opposition to mandates would result in removal of children from the educational system. Study DesignPerform a cross-sectional, anonymous survey of adult caregivers with children ≤ 18 years presenting to 21 pediatric emergency departments in the United States, Canada, Israel, and Switzerland, November 1st through December 31st, 2021. The primary outcome was caregiver acceptance rates for school vaccine mandates, and the secondary outcomes included factors associated with mandate acceptance and caregiver intention to remove the child from school. ResultsOf 4,393 completed surveys, 37% of caregivers were opposed to any school vaccine mandate. Caregiver acceptance was lowest for daycare settings (33%) and increased as the child’s level of education increased, college (55%). 26% of caregivers report a high likelihood (score of 8–10 on 0–10 scale) to remove their child from school if the vaccine became mandatory. Child safety was caregivers’ greatest concern over vaccine mandates. A multivariable model demonstrated intent to vaccinate their child for COVID-19 (OR = 8.9, 95% CI 7.3 to 10.8; P < 0.001) and prior COVID-19 vaccination for the caregiver (OR = 3.8, 95% CI 3.0 to 4.9; P < 0.001) had the greatest odds of increasing mandate acceptance for any school level. ConclusionsMany caregivers are resistant to COVID-19 vaccine mandates for schools, and acceptance varies with school level. One-fourth of caregivers plan to remove their child from the educational system if vaccines become mandated.

Peace in the PACU

<h3>Introduction</h3> Open-bay Post Anesthesia Care Unit (PACU) environments can be loud and overstimulating for patients, caregivers, and healthcare workers. Literature describes noise interferes with the patient's surgical recovery and increases the need for analgesia. In patients and healthcare workers, physiologic (increased heart rate, blood pressure) and psychologic (sleeplessness, stress) changes are associated with increased noise levels as well as medical errors, miscommunication, and surgical site infections. <h3>Identification of the Problem</h3> Reports of a noisy, loud pediatric PACU environment has been identified as an area of improvement by healthcare workers, patients, and caregivers. <h3>Purpose of the Study</h3> Evaluate the effects of noise-reducing curtains on PACU noise level and noise perception by caregivers. <h3>Methodology</h3> Institutional Review Board approval was obtained. A pre/post- intervention study design was employed to evaluate the effectiveness of noise-reducing curtains on noise level and caregiver perception. Noise decibels were measured with calibrated dosimeters. An acoustical assessment was performed and caregiver perception of noise was measured by anonymous surveys. <h3>Results</h3> Following noise-reducing curtain installation no statistical significance in overall decibel levels was observed, however intrusive noise was reduced by 35% - 50%. Additionally, 54.7% of caregivers reported the area around the bay was never quiet before installation compared to 15.5% after noise-reducing curtain installation. <h3>Discussion</h3> This study was done to validate results from a 2019 study in the same PACU where a statistically significant reduction in decibel levels was observed following noise-reducing curtain installation. This study did not validate an improvement in decibel levels likely due to pandemic-related effects such as decreased surgical volumes and an intentional reduction of caregivers and healthcare workers at the bedside. However, this study does validate the use of noise-reducing curtains to improve noise perception. <h3>Conclusion</h3> Noise and sound are multi-dimensional. Though a statistically significant reduction in noise levels was not observed, sound transmission, speech privacy, and reverberation measurements revealed statistically significant reduction in noise perception. Caregiver surveys supported the use of noise-reducing curtains in providing a more therapeutic environment. <h3>Implications for perianesthesia nurses & future research</h3> Literature describes noisy hospital environments lead to negative outcomes for patients, caregivers, and healthcare workers. Noise-reducing curtains are an evidence-based intervention that can improve noise perception in PACUs.

Caregiver Perspective on the Impact of COVID-19 on the Psychosocial and Behavioral Health of Children with ASD in the United States: A Questionnaire-Based Survey

Children with Autism Spectrum Disorder (ASD) were particularly vulnerable to disruptions caused by the COVID-19 pandemic. In this study we conducted an anonymous caregiver survey to assess the impact of the COVID-19 pandemic on the psychosocial and behavioral health of children with ASD. Data from 700 responses identified several significant factors predicting greater difficulties for the child including pre-existing behavioral challenges (OR = 5.179; 95% CI: 2.696, 9.951), disrupted sleep (OR = 2.618; 95% CI 1.341, 5.112), and a diagnosis of depression (OR = 3.425; 95% CI: 1.1621, 4.116). Greater difficulties for caregivers in managing their child’s behaviors were associated with sleep disturbances (OR = 1.926; 95% CI: 1.170, 3.170), self-injurious behavior (OR = 3.587; 95% CI: 1.767, 7.281), and managing the child’s school activities (OR = 3.107; 95% CI: 1.732, 5.257) and free time (OR = 3.758; 95% CI: 2.217, 6.369). However, being under the care of a neuropsychiatrist was associated with less difficulty in managing the child’s behaviors (OR = 2.516; 95% CI: −1.046, −5.382). Finally, the presence of comorbidities (OR = 2.599; 95% CI: 1.053, 4.067) and a greater difficulty in managing the child’s school activities (OR = 2.531; 95% CI: 1.655, 3.868) and free time (OR = 1.651; 95% CI: 1.101, 2.478) were associated with an increased likelihood of caregiver desire for their child to return to in-person school in the fall. The COVID-19 pandemic had a wide-ranging impact on the behaviors of children with ASD and challenges for their caregivers.

Identifying Family and Unpaid Caregivers in Electronic Health Records: Descriptive Analysis.

BackgroundMost efforts to identify caregivers for research use passive approaches such as self-nomination. We describe an approach in which electronic health records (EHRs) can help identify, recruit, and increase diverse representations of family and other unpaid caregivers.ObjectiveFew health systems have implemented systematic processes for identifying caregivers. This study aimed to develop and evaluate an EHR-driven process for identifying veterans likely to have unpaid caregivers in a caregiver survey study. We additionally examined whether there were EHR-derived veteran characteristics associated with veterans having unpaid caregivers.MethodsWe selected EHR home- and community-based referrals suggestive of veterans’ need for supportive care from friends or family. We identified veterans with these referrals across the 8 US Department of Veteran Affairs medical centers enrolled in our study. Phone calls to a subset of these veterans confirmed whether they had a caregiver, specifically an unpaid caregiver. We calculated the screening contact rate for unpaid caregivers of veterans using attempted phone screening and for those who completed phone screening. The veteran characteristics from the EHR were compared across referral and screening groups using descriptive statistics, and logistic regression was used to compare the likelihood of having an unpaid caregiver among veterans who completed phone screening.ResultsDuring the study period, our EHR-driven process identified 12,212 veterans with home- and community-based referrals; 2134 (17.47%) veteran households were called for phone screening. Among the 2134 veterans called, 1367 (64.06%) answered the call, and 813 (38.1%) veterans had a caregiver based on self-report of the veteran, their caregiver, or another person in the household. The unpaid caregiver identification rate was 38.1% and 59.5% among those with an attempted phone screening and completed phone screening, respectively. Veterans had increased odds of having an unpaid caregiver if they were married (adjusted odds ratio [OR] 2.69, 95% CI 1.68-4.34), had respite care (adjusted OR 2.17, 95% CI 1.41-3.41), or had adult day health care (adjusted OR 3.69, 95% CI 1.60-10.00). Veterans with a dementia diagnosis (adjusted OR 1.37, 95% CI 1.00-1.89) or veteran-directed care referral (adjusted OR 1.95, 95% CI 0.97-4.20) were also suggestive of an association with having an unpaid caregiver.ConclusionsThe EHR-driven process to identify veterans likely to have unpaid caregivers is systematic and resource intensive. Approximately 60% (813/1367) of veterans who were successfully screened had unpaid caregivers. In the absence of discrete fields in the EHR, our EHR-driven process can be used to identify unpaid caregivers; however, incorporating caregiver identification fields into the EHR would support a more efficient and systematic identification of caregivers.Trial RegistrationClincalTrials.gov NCT03474380; https://clinicaltrials.gov/ct2/show/NCT03474380

Utilizing technology to expand home monitoring to high-risk infants with CHD.

Infants born with single ventricle physiology that require an aorto-pulmonary shunt are at high risk for sudden cardiac death, particularly during the interstage period between the first-stage palliation and the second-stage palliation. Home monitoring programs have decreased interstage mortality in the hypoplastic left heart syndrome population prompting programs to expand the home monitoring program to other high-risk populations. At our mid-sized program, we implemented the Locus Health home monitoring platform first in the hypoplastic left heart syndrome population, then expanding to the single ventricle shunt population. Interstage mortality for the hypoplastic left heart syndrome population after initiation of the home monitoring program went from 18% prior to 2009 to 7% as of the end of 2020 (n = 99), with 2.8% mortality from 2013 to 2020 and 0% mortality since initiation of the Locus program in 2017. Caregiver surveys done prior to discharge and then 3 weeks later were used to document caregiver experience using the digital home monitoring program. Caregivers reported overall positive experience with the digital application, with 91.8% stating that they felt confident taking care of their baby at home. Transitioning the home monitoring program from a traditional binder to an iPad with the Locus Health application allowed us to expand the program, utilize the electronic medical record, bill for the service, and demonstrate positive experiences for caregivers. Overall engagement and adherence with the program by caregivers were 50.94 and 45.45%, with a total of 112 patient episodes. Reimbursement from private insurance providers was 22% of the billed amount for 2020.

Godly Play Went Home: An Exploratory Study of the Experience of Godly Play in Homes during the Covid-19 Pandemic through the Lens of Caregivers

This study explored caregivers’ experiences of virtual Godly Play in the United States, South Korea, and the UK during COVID-19 lockdowns. Thematic analysis of thirty-three caregiver surveys and six semi-structured interviews revealed four themes: support/community, intergenerational Godly Play, spiritual maintenance and growth for the family, and the gift of wonder. This study shows that the experience of Godly Play at home during the pandemic benefited caregivers. As the pandemic subsides and we return to child-centered programming in churches, this study highlights the importance of including and equipping caregivers in nurturing their children’s spirituality.

The Autism Impact Measure (AIM): Meaningful Change Thresholds and Core Symptom Changes Over One Year from an Online Survey in the U.S.

Validated outcome measures with the capacity to reflect meaningful change are key to assessing potential interventions for autism spectrum disorder (ASD). We derive clinically meaningful change thresholds (MCTs) of the Autism Impact Measure (AIM) and identify factors associated with meaningful change. Baseline and 12-months follow-up survey of caregivers of 2,761 children with ASD aged 3-17years from the U.S. Simons Foundation Powering Autism Research for Knowledge (SPARK) cohort were analyzed. Using caregiver-reported anchors for change, the 12-month change in estimated AIM MCT (95% confidence interval) for symptom improvement was -4.5 (-7.61, -1.37) points and 9.9 (5.12, 14.59) points for symptom deterioration. These anchor-based MCTs will facilitate future assessments of caregiver-reported change in AIM scores.

Examination of racial/ethnic disproportionality of autism in California

BackgroundRacial/Ethnic disparities continue to exist for minoritized communities. This study is an examination of the risk ratio analysis of racial/ethnic special education disproportionality in schools for the category of autism in the state of California. MethodWe extracted and analyzed state level risk ratio data. We used descriptive statistics and compared school districts with significant disproportionality in autism across multiple variables (demographics, enrollment, English Learners, socio-economic status). Additionally, a caregiver survey was sent to caregivers in one disproportionate school district as part of a root cause analysis. ResultsIt was found that, in 2019, all districts in California with a racial/ethnic significant disproportionality in the autism category were for the overidentification of White students. Importantly, all the districts in the sample had strikingly similar student demographics; a large majority of Latinx/Hispanic students, a large percentage of English Language Learners and low-income students. Results revealed a significant discrepancy between caregiver identified early signs of delays, or red flags of disability by Spanish-speaking Latinx caregivers (14%) and English-speaking caregivers (77%). ConclusionsResearchers and school districts aiming to address systemic disparities in special education need to capture caregiver perspectives in their root cause analyses. Importantly, these findings point to the duty of school systems to address the autism identification and service gaps for families whose primary language is other than English.

Child and caregiver mental health during 12 months of the COVID-19 pandemic in Australia: findings from national repeated cross-sectional surveys

BackgroundThere are calls for research into the mental health consequences of living through the COVID-19 pandemic. Australia’s initial, effective suppression of COVID-19 offers insights into these indirect impacts in the...

PCR144 Mosaic: A Qualitative Study of the Humanistic and Financial Burden on Unpaid Caregivers of Patients with Geographic Atrophy (GA)

Geographic atrophy (GA) is a leading cause of blindness in the elderly; however, there is limited research on the GA caregiver experience. We conducted a qualitative study of the humanistic and financial burden on unpaid GA caregivers to characterize their perspectives on caring for someone with GA. Qualitative study results guided the design of a global GA caregiver survey launched in 2021 and are being presented for the first time here.

PCR61 Burden and Impacts Associated with Caring for Neovascular Age-Related Macular Degeneration and Diabetic Macular Edema Patients: A Multinational Caregiver Survey

Optimal real-world outcomes in neovascular age-related macular degeneration (nAMD) and diabetic macular edema (DME) require frequent and potentially burdensome visits for patients and their caregivers. This study aimed to understand the caregiver perspective on treatment burden, barriers and the impact of caregiving, with a particular focus on the demands of frequent anti-vascular endothelial growth factor (anti-VEGF) intravitreal injection treatment.

Analysis of perceived risk and satisfaction with telematic follow-up in patients and families of congenital diaphragmatic hernia patients during SARS-CoV-2 pandemia

BackgroundThe impact of COVID-19 in families and patients with congenital diaphragmatic hernia (CDH) is unknown, this situation has generated uncertainty not only in family members but also in the optimal outpatient follow-up. Telehealth has become a fundamental tool for the follow-up during the pandemic. The objective of this survey is to evaluated the impact of SARS-CoV-2 in families and patients with CDH and the satisfaction with telematic follow-up. MethodsTelephone survey of patient's caregivers with CHD, aged 1–16 years, followed in neonatal surgery outpatients, from January 31, 2020 to November 15, 2020. The ethical clearance for this study was taken from the Clinical Research Ethics Committee of our Research Institute vide letter number VHIR/239283/01.01.2021. Results81 surveys of 100 patients with active follow-up were carried out. There were no refusals in any contacted parents. There were 30 contacts (37%), 44.8% at school and 27.6% from cohabiting family members. Four infections (4.9%) were diagnosed, half symptomatic. In 40 patients (49.4%) the follow-up was telematic, with a mean score of 3.1±1.3 out of 5. For future controls, 65% prefer presential follow-up, 25% alternate and 10% telematics. 50.6% reported greater anxiety and 34.6% (28/81) extreme measures of isolation, being more accentuated in the group of 3–6 years (p<0.05). ConclusionThe impact of COVID19 in patients with CHD is not greater than in the general pediatric population. Although the incorporation of the telehealth was well valued, most of the caregivers prefer the face-to-face outpatient follow-up.

Survey for Caregivers of People with Autism Spectrum in Chile: Access to Health and Education Services, Satisfaction, Quality of Life And Stigma

People on the Autism Spectrum (AS) face multiple health, education, social, and economic pro blems. There is limited available information in Chile. To describe the access and satisfac tion with health and education services, family and economic impact, stigma, and quality of life of people with AS and their families in Chile. Parents/caregivers of AS persons completed the Caregiver Needs Survey, developed by Autism Speaks, which includes demographic information, characteristics of AS persons (previously published), use of health and education servi ces, parents/caregivers' perceptions of satisfaction, impact, stigma, and quality of life. 291 caregivers (86% mothers) of 291 AS persons participated, 89% were male, aged 1-40 years (X:10.4 SD:6.1). Limited and unspecific access to health services is reported. 77% are regularly attending a standard or special school system. Families pay for over 60% of therapies/medical care and over 40% of specific educational support, and 25% report difficulties in accessing services. The family income is affected by resignation (35%) or reduced working hours (46%). Stigma is associated with possi ble discrimination and feelings of helplessness. The main priorities mentioned for a better quality of life are support for inclusive schooling, better adjustment at home, and improved socialization. This survey provides relevant information about the needs, barriers, and challenges of AS people in Chile and highlights the difficulties in accessing health services and the severe impact on family income. Feelings of stigma, discrimination, and helplessness are reported. Collaborative strategies are needed to improve the quality and access to services and to reduce the economic and mental health burden on the family.

P217 Exercise as airway clearance therapy (ExACT) in cystic fibrosis: a UK-based e-Delphi survey of patients, caregivers and health professionals

P217 Exercise as airway clearance therapy (ExACT) in cystic fibrosis: a UK-based e-Delphi survey of patients, caregivers and health professionals