Guardians Of Patients Research Articles

6811 RESTORE: a Real-World Study of Setmelanotide in Patients With MC4R Pathway Diseases

Abstract Disclosure: C. Huber: Employee; Self; Rhythm Pharmaceuticals, Inc.. Stock Owner; Self; Rhythm Pharmaceuticals, Inc. B. Sweeney: Consulting Fee; Self; Rhythm Pharmaceuticals, Inc., Novo Nordisk. Research Investigator; Self; Rhythm Pharmaceuticals, Inc.. Speaker; Self; Rhythm Pharmaceuticals, Inc. J. Pomeroy: Research Investigator; Self; Rhythm Pharmaceuticals, Inc. U. Mallya: Employee; Self; Rhythm Pharmaceuticals, Inc.. Stock Owner; Self; Rhythm Pharmaceuticals, Inc. S. Zhang: Other; Self; Employer received funding from Rhythm Pharmaceuticals, Inc. to support this research. M. Yang: Other; Self; Employer received funding from Rhythm Pharmaceuticals, Inc. to support this research. S. Malhotra: Employee; Self; Rhythm Pharmaceuticals, Inc.. Stock Owner; Self; Rhythm Pharmaceuticals, Inc. A.M. Haqq: Advisory Board Member; Self; Rhythm Pharmaceuticals, Inc., Novo Nordisk, Foundation for Prader-Willi Research USA. Grant Recipient; Self; Weston Family Microbiome Initiative and Canadian Institutes of Health Research. Background: Setmelanotide has demonstrated efficacy in clinical trials of patients with obesity due to rare melanocortin-4 receptor pathway diseases. Real-world evidence can provide a greater understanding of patient outcomes, such as hyperphagia and quality of life, in a clinical practice setting. Real-world Evidence of SeTmelanotide fOr Hyperphagia and ChRonic Weight ManagEment (RESTORE) is a prospective, observational, longitudinal study aimed at assessing patient- and caregiver-reported real-world effectiveness of setmelanotide among patients with Bardet-Biedl syndrome and proopiomelanocortin, proprotein convertase subtilisin/kexin type 1, or leptin receptor deficiency and their caregivers. Methods: Patients aged ≥6 years and caregivers aged ≥18 years who are able to respond to a survey in English and consented to the Rhythm Intune Program are eligible for the study. Patients must have been prescribed, but not yet initiated, setmelanotide, not have been previously treated with setmelanotide, and not have previously participated in or be currently enrolled in any clinical trial, including setmelanotide trials. Caregivers must be confirmed legal guardians of patients without prior exposure to setmelanotide, have cared for their patient for ≥6 months, and not be paid professional caregivers. Participants will complete secure online surveys at baseline (ie, before treatment) and at 6 posttreatment time points over a 1-year study period. Patient surveys collect information on hyperphagia-related signs and symptoms, medical history, treatment adherence, weight management programs and treatment, comorbidities/complications, comedications, disease impact on psychological well-being and health-related quality of life, treatment satisfaction, work/school/activity status, and patient global assessment. Caregiver surveys include assessments on psychological well-being, treatment satisfaction, and impact on activities of daily living, work status, and family dynamics. A subset of study patients will be invited to receive a wearable device (CentrePoint® Insight Watch) to assess activity and sleep patterns. Treatments and outcomes among patients will be described and compared with baseline for all post-treatment initiation assessment time points. Current status: RESTORE is the first study to assess the real-world effectiveness of setmelanotide, has been IRB approved, and is actively enrolling. Presentation: 6/3/2024

Cost-Effectiveness of Varicella Vaccination for 1–4-Year-Olds in Shanghai, China

IntroductionVaricella has not yet been included in the National Immunization Program (NIP) in China, and varicella vaccination strategies vary by region. To determine the optimal varicella vaccination strategy in Shanghai, China, the cost-effectiveness and five-year costs of five immunization scenarios were analyzed. MethodsA static decision tree-Markov model was developed in 2022 to assess the cost-effectiveness and five-year costs of voluntary and routine varicella vaccination programs in the 2019 birth cohort in Shanghai from a societal perspective. Parameters were collected in 2022 from the varicella surveillance system, a questionnaire survey of 414 guardians of patients with childhood varicella, and semi-structured interviews with 20 experts on varicella outbreaks from different institutions in Shanghai. The outcomes included varicella cases avoided, quality-adjusted life year (QALY) loss, and incremental costs per QALY (ICER). The five-year costs were compared with local medical expenditures. ResultsAmong the five scenarios, one dose of routine varicella vaccination was the most cost-saving (USD 70.2) and cost-effective (Dominant) with a five-year immunization expenditure of USD 9.9 million. Two doses of routine varicella vaccination had the highest QALY (29.9), and its ICER (USD 791.9/QALY) was below the willingness-to-pay threshold (USD 5,203-23,767/QALY). The five-year immunization expenditure was USD 19.8 million. The effectiveness and price of vaccines, vaccination coverage, and per capita income are the four main factors that affect ICERs. ConclusionsIn Shanghai, the two doses of routine varicella vaccination strategy for 1- and 4-year-olds with a 95% coverage rate was found to be the optimal varicella immunization strategy.

Socio-economic burden of sickle cell disease on families attending sickle cell clinic in Kano state, northwestern Nigeria

This study aimed to assess the socio-economic impact of sickle cell disease (SCD) on families of patients receiving care at the SCD clinic of Aminu Kano Teaching Hospital (AKTH) in Kano, Northwest Nigeria. The research adopted a descriptive cross-sectional approach, involving the participation of 273 individuals selected through a multi-stage sampling method. Data was gathered using semi-structured interviews and subjected to analysis using SPSS software. The study achieved a 100 % response rate, with 84 % of the participants being females. The average age of the participants was 35.1 ± 8.6 years, and a significant proportion (79.9 %) reported a monthly income of thirty thousand naira or less. The findings of the study revealed that SCD had a notable social impact, affecting 93.5 % of participants occasionally and 5.8 % most of the time. Furthermore, a substantial financial burden was experienced by 54.2 % of respondents most of the time and 45.1 % occasionally. The research also highlighted the significant influence of SCD on guardians' employment status, income levels, time spent in hospitals, medical expenditures, and overall quality of life. These findings underscore the considerable social and financial challenges faced by guardians of SCD patients. Study results supports prioritizing affordable healthcare access for families affected by SCD to alleviate the burdens they face.

A Randomized Controlled Trial Comparing Polyethylene Glycol with Sodium Phosphate for Gut Preparation in children undergoing Proctoscopy

Background: The outcome of diagnostic and therapeutic procedures such as proctoscopy, colonoscopy, and endoscopy relies on thorough bowel preparation, ensuring a complete view of the colonic mucosa. Aim: To compare polyethylene glycol with sodium phosphate for gut preparation in children undergoing proctoscopy. Methods: We conducted a study on pediatric patients aged 3 to 14 years who underwent elective proctoscopy. The study took place in the pediatric surgical ward of Mayo Hospital, Lahore, following approval from the hospital's Ethical Committee. We educated the parents or guardians of patients preoperatively about the use of bowl preparatory agents, their effectiveness, outcomes, side effects, complications, and informed consent. We divided the children into two groups to determine the method of bowl preparation. Patients in Group 'A' underwent bowl preparation using polyethylene glycol. Results: There were 60 patients, with 30 in each group. Patients in Group 'A' were given bowl preparation with polyethylene glycol. Before the proctoscopy, the patients underwent a 1-day PEG 3350 bowel preparation regimen. While group B had bowel preparation with sodium phosphate enema, the patients' mean ages were 4.46 years. In group A, there were 16 males and 14 females, while in group B, there were 19 males and 11 females. In group A, 11 patients demonstrated excellent compliance, 12 showed partial compliance, and 7 showed poor compliance with polyethylene glycol. While in group B, 22 patients showed excellent compliance, and 8 patients showed good compliance. Practical Implication: The study suggests that both polyethylene glycol (PEG) and sodium phosphate enema are suitable for pediatric patients undergoing proctoscopy. However, compliance rates vary between the two methods. Patients in group A showed varying levels of compliance, while those in group B showed higher compliance. Therefore, healthcare providers should consider sodium phosphate enema for improved patient adherence and procedural outcomes. This highlights the importance of assessing compliance rates for informed decision-making. Conclusion: In our experience, sodium phosphate enema was superior to oral polyethylene glycol in terms of compliance and adequacy of gut preparation. There were also fewer side effects with the sodium phosphate enema. Keywords: Polyethylene glycol, proctoscopy, gut preparation

Diagnostic Delay in Pediatric Cancer; Causes and Effect on Survival Rates

Background Currently, timely diagnosis immediately followed by effective treatment is an essential approach for control of the public health burden due to childhood cancers. Our aim was to ascertain the median lag time till diagnosis, and treatment of pediatric patients with malignancy and to determine factors influencing the delayed diagnosis and relate delay times to diagnosis with overall and event free survival rates. Methods A cross sectional prospective study including children and adolescents with confirmed cancer diagnosis was conducted in Pediatric Hematology –Oncology Unit of Ain Shams University Children's Hospital, Egypt. A predesigned questionnaire was structured to collect data from parents or legal guardians of patients diagnosed with cancer about demographic and cancer characteristics the latter included presenting symptoms, type, site, risk, modalities of diagnosis, time to diagnose, treatment with calculation of event free survival and overall survival times. Results The study enrolled 115 children and adolescents with cancer during the period from August 2020 to May 2021. Misdiagnosis was initially recorded in 16 (13.9%) patients. Median total diagnostic delay or Lag Time (LT) for all patients was 53 days. Patients’ gender, age and socioeconomic status did not affect the median total delay, whereas residency, misdiagnosis, presence of health insurance, tumor location and presence of metastasis significantly influenced the total diagnostic delay. There was no significant correlation between overall and event free survival rates and total diagnostic delay. Conclusion Delayed diagnosis of solid malignant neoplasms except Wilms tumor, needs more attention to health care providers awareness especially in rural regions.

HPV vaccination rates in 9- and 10-year-olds following a pharmacist-led intervention

BackgroundThe American Cancer Society and the American Academy of Pediatrics recommend administering the human papillomavirus (HPV) vaccine to children aged 9 and 10 years to improve on-time vaccination rates as they continue to be below national goal. Pharmacist-led interventions using the electronic health record (EHR) may be an effective way to increase these rates. ObjectiveThis study aimed to evaluate change in first-dose HPV vaccination rate in 9- and 10-year-olds before and after a multifaceted HPV outreach initiative. MethodsA pre-post, quasi-experimental study involving a pharmacist-led intervention was implemented at 2 primary care offices within a large health care network. Adolescents aged 9 and 10 years during the entire intervention period were included. Between November 1, 2021, and March 31, 2022, an education session was provided by an ambulatory care pharmacist to each primary care team regarding the HPV vaccine and eligibility of 9- and 10-year-olds. On June 1, 2022, a direct message was sent via the EHR to parents or guardians of eligible patients describing eligibility, risks and benefits, and best practice recommendations. The primary end point evaluated change in first-dose HPV vaccination rates in 9- and 10-year-olds measured 6 months after direct messaging. Secondary outcomes evaluated EHR message receipt, adverse events, and program revenue. Nominal outcomes were assessed with McNemar’s test or Cochran’s Q test using SPSS software; P < 0.05 was considered significant. ResultsA total of 367 patients aged 9 and 10 years were eligible for HPV vaccination. After the intervention, 45 patients were vaccinated with vaccination rate increasing from 0.5% to 12.8% (P < 0.001). A total of 288 (78.5%) had access to EHR messaging with 203 (55.3%) having confirmed receipt of the message. No adverse reactions were reported within 7 days of vaccination. Most patients (76%) had private insurance, followed by Medicaid (22.6%) and uninsured (1.4%). Approximate revenue of the program was $4129.89. ConclusionsA multifaceted intervention using education and EHR direct messaging significantly increased HPV vaccination rates in 9-and-10-year-olds.

E22 Experiences among parents caring for children with juvenile idiopathic arthritis at a tertiary referral hospital in Kenya

Abstract Background Juvenile idiopathic arthritis (JIA) is a highly morbid disease associated with significant rates of preventable permanent damage. The burden and distribution of JIA in African countries vary compared with data across the globe. High-income countries have shown a higher prevalence of JIA compared with low-income countries. Recent studies done in Zambia and Nigeria demonstrated contrasting results in the distributions of the subtypes of JIA within the African continent and those seen in Western countries. Most of these studies were quantitative in nature, looking at health related quality of life within this cohort of patients. Studies done looking at the parental experiences in caring for children for JIA have been reported in high income countries. No studies have been reported within our region to assess the impact of JIA has on parents/guardians caring for children suffering from JIA. Studies from high income countries have shown negative impacts on the social, emotional and financial well-being of guardians caring for children with JIA. We aim to look at impact JIA has on guardians caring for children affected within our context. A few studies in high income countries reported that parental experiences and perceptions play a big role in the long term wellbeing of the child. It still remains unknown the impact JIA might have within our population. Methods This will be a phenomenological type of qualitative study design. 18 potential participants (below 16 years) with a confirmed diagnosis of JIA will be purposively selected from the Kenya pediatric rheumatology registry database (KAPRI). Guardians of patients who meet the inclusion criteria will be scheduled for an introductory meeting on specific days of the week in line with their pediatric rheumatology appointment and in the presence of the primary investigator and the rheumatology consultant. Parental experiences will have been conceptualized using four major indicators: social experience, financial experiences, psychological experience, and medical and treatment-related experiences which impact their overall quality of life. These four concepts have been operationalized using various indicators which were retrieved from literature. The interview guide questionnaire was informed by the conceptual framework which was developed from extensive literature review findings on lived experiences of patients with various health conditions. The concepts in the framework will also serve as the pre-determined themes guiding the deductive thematic data analysis. We shall carry out a deductive thematic data analysis. Hence pre-determined themes extracted from the conceptual framework which was developed from extensive literature review findings on lived experiences of patients will be used in analyzing the data. At the same time, any other new emerging themes will be considered. The transcribed data will be analyzed using the Max for Qualitative Data Analysis (MAXQDA) software program version 2022. Results This project is in its preliminary data collection phase and enrolment of participants is ongoing at the Aga khan University Hospital Nairobi after approval by the Institutional Scientific and Ethical Review Committee (ISERC). Conclusions The results in this study will open avenues for further bigger studies to help promote patient centered care. The results in this study will depict the impact of JIA within our context, as studies done outside of Africa cannot be extrapolated because of the differences in social, economic, and cultural standards and capabilities of practice. Currently, the paucity of data from Africa makes it difficult to predict the burden and impact that JIA pauses on families. This study being a qualitative design, will give an in-depth view on the impact the disease has on the families compared with quantitative studies looking at the quality of life which scarce and despite their values, have limitations such as the inability to include social and cultural aspects and emotional aspects of children's lives and their families and the meaning of life.

Telehealth utilization barriers among Alabama parents of pediatric patients during COVID-19 outbreak

BackgroundTelehealth can improve access to evidence-based care at a lower cost for patients, especially those living in underserved and remote areas. The barriers to the widespread adoption of telehealth have been well documented in the literature. However, the barriers may not be the same for pediatric patients, who must rely on their parents or guardians to make healthcare decisions. This paper presents some of the leading barriers parents or guardians of pediatric patients report in using telehealth to meet their children’s healthcare needs.MethodsThis cross-sectional survey was conducted in a tertiary care pediatric Emergency Department (ED) at a children’s hospital in Alabama between September 2020 to December 2020. The parents or guardians of pediatric patients were asked about their reasons for not using telehealth despite having healthcare needs for their children, whether they canceled or rescheduled healthcare provider visits and facility visits, and whether the child’s health conditions changed over the past three months. Descriptive analyses were conducted that explored the distribution of telehealth use across the variables listed above.ResultsFive hundred ninety-seven parents or guardians of pediatric patients participated in the survey, and 578 answered the question of whether they used telehealth or not over the past three months. Of them, 33.1% used telehealth, 54.3% did not, and 12.6% did not have healthcare needs for their child. The leading reason for not using telehealth was that the doctor or health provider did not give them a telehealth option, the second main reason was that they did not know what telehealth is, and the third leading reason was that the parents did not think telehealth would help meet healthcare needs for their child.ConclusionsThis study highlights the telehealth utilization barriers among underserved pediatric populations, including the need for physicians to proactively offer telehealth options to parents or guardians of pediatric patients. Improving health literacy is of paramount importance, given that a substantial proportion of parents were not familiar with telehealth. Policymakers and healthcare organizations should raise awareness about the benefits of telehealth which can improve healthcare access for underserved pediatric patients.

The SARS-CoV-2 vaccination rate and hesitation in Shanghai older adults with dementia.

Older adults, particularly those with dementia, are at the greatest risk for being affected by SARS-CoV-2. Despite the Chinese government's efforts to encourage older adults to receive SARS-CoV-2 vaccines, the vaccination rate, especially among older adults with dementia, remains low. This study aimed to examine the willingness and attitudes towards vaccination among guardians of older adults with dementia and to uncover the factors that may have influenced attitudes towards vaccination during the 2022 Omicron Variant of SARS-CoV-2 outbreak in Shanghai, China. We conducted a cross-sectional study using self-administered anonymous questionnaires to guardians of dementia patients in three settings: psychogeriatric inpatient wards, long-term care facilities, and home settings from April to May 2022. The primary outcome was participants' willingness to allow dementia patients to receive SARS-CoV-2 vaccines. Logistic regression analyses were used to identify factors associated with vaccination willingness. A total of 327 valid questionnaires were collected. The vaccination rate among participants from long-term care facilities (12.9%) was lower than those in the psychiatric ward (19.3%) or community-dwelling settings (27.1%) (p < 0.05). The guardians' primary concern was that vaccination would aggravate the health conditions of dementia patients [adjusted odds ratio (OR) = 5.11; 95% confidence interval (CI): 1.86-14.05]. Additionally, negative reports about the vaccination [OR = 3.94; 95% CI: 1.68-9.24], and adverse reactions [OR = 2.50; 95% CI: 1.13-5.52] were related to higher odds of vaccine hesitancy. Our results showed that low vaccination rates in older adults with dementia were mainly due to their guardians' concerns about vaccine safety. Our findings first uncovered the actual SARS-CoV-2 vaccination rates among older adults with dementia and may provide potential interventions to reduce unjustified worries towards vaccination.

A Qualitative Analysis of Transition from Pediatric to Adult Care for Patients with Autism and Intellectual Disabilities (P13-9.010)

<h3>Objective:</h3> We aim to evaluate and improve the pediatric to adult transition process for young adults with autism or intellectual disability. <h3>Background:</h3> Transition from pediatric to adult care is a daunting process for patients, especially those with autism and intellectual disabilities. Access to insurance, management of finances, and identifying a qualified primary adult care physician are some of the barriers to care. Pediatric neurology clinics play a critical role in preparing their families for the transition from pediatrics to adult care. <h3>Design/Methods:</h3> We assessed the current process to advise families on the adult transition process and available resources. We created a questionnaire to assess guardians’ comfort and understanding of the adult transition process. Questions probed guardians’ confidence concerning accessing resources, plans made by providers, and other aspects of the transition process. <h3>Results:</h3> Review of current processes revealed a lack of standardized procedures for adult transition planning. Age at the first conversation about transition varied, there were redundant resources, and outdated online resources that caused delays in transition and confusion for families. Additionally, there was an insufficient breadth of resources to serve the diverse socioeconomic and health literacy levels of the patient families. Preliminary results of guardian questionnaires showed confidence in the general understanding of transitioning from pediatrics to adult providers but were not confident when questioned about how to access resources, having a detailed plan, and knowledge of patient rights. <h3>Conclusions:</h3> Results suggest that guardians have confidence in the idea of transition broadly but lack sufficient knowledge or resources to successfully execute the process. We will continue to collect questionnaires and conduct semi-structured interviews with guardians of adolescent patients in order to generate a standardized process for pediatric to adult transitioning. The new process should increase patient knowledge, increase provider accountability, and improve efficiency of the transition process. <b>Disclosure:</b> Ms. Carter has nothing to disclose. Mr. Chambers has nothing to disclose.

PARENTS‘ KNOWLEDGE AND PERCEPTION OF AND HESITANCY TOWARDS COVID-19 VACCINE AMONG PAEDIATRIC PATIENTS IN HOSPITAL SEBERANG JAYA, PULAU PINANG

The COVID-19 epidemic has had serious negative effects on children in terms of both their health and societal effects. However, owing to reports of a low vaccination rate, the objective of this study was to explore the factors associated with parents’ hesitation in getting their young children vaccinated. This is a cross-sectional study conducted in a tertiary hospital. All parents or legal guardians of paediatric patients with chronic illnesses aged 3 to 11 who visited the hospital during the study period filled out the online questionnaire. Two hundred and thirty-five outpatient clinic respondents and 77 ward respondents were asked to complete the questionnaire. Malays made up the majority (88.5%), followed by Chinese (6.7%) and Indians (4.8%). Ethnicity, information sources, children‘s age, knowledge score and vaccine perception were found to be significantly different across three degrees of acceptance – ‘Yes’, ‘No’ and ‘Not sure’. There was a significant correlation between ‘Yes’ and ‘No’ replies and parents‘ perceptions of immunisation hurdles. When compared to the Malays, the Chinese had substantially lower odds of responding with ‘Not sure’. Parents‘ acceptance of the vaccine was influenced by their awareness of COVID-19, the effectiveness of the vaccine, any side effects and doctors‘ recommendations. Parents were less concerned about vaccine side effects as their children aged. To infer, authorities should respond to public concerns and adverse events related to immunisation in a timely and transparent manner. To increase immunisation rates, it is important to inform the public that the advantages of receiving COVID-19 vaccination exceed its risks.

Treatment of corneal dermoid with lenticules from small incision lenticule extraction surgery: a surgery assisted by fibrin glue.

To observe the clinical efficacy of the combined use of small incision lenticule extraction (SMILE)-derived lenticule patches in corneal dermoid excision, with fixation of the lenticule patches assisted by fibrin glue. Seventeen eyes of 17 patients with corneal dermoid were treated with dermoid removal combined with SMILE-derived lenticule transplantation. All lenticule patches were fixed by fibrin glue. Ocular changes were assessed using slit lamp microscopy and anterior-segmental optical coherence tomography. The best-corrected visual acuity (BCVA) and ocular dioptric variations were examined preoperatively and postoperatively. Intraocular pressure (IOP) was also monitored in all visited time. Totally, 18 lenticule patches were used on 17 eyes of 17 cornea dermoid patients. The mean follow-up time was 11.47±5.28mo. All lenticule patches were successfully glued, kept on its location and maintained transparent during the follow-up time, with a consecutive epithelial cover for 1wk. Nine of the patients could coordinate visual and optometry exam well. Their preoperative BCVA is 0.60±0.35 in decimal, significantly improved to 0.80±0.26 in decimal at 6mo postoperatively (Z=-2.392, P=0.017), but the changes of their corneal astigmatism diopters showed no significance, with 2.22±1.91 D preoperatively, and 2.28±1.31 D at 6mo postoperatively (Z=-0.135, P=0.893). Limbal pannus formation occurred in 4 (23.52%) cases and decreased with the application of tacrolimus eyedrops. IOP increased in 2 (11.76%) cases, but well decreased by timolol maleate eyedrops. All the adult patients or guardians of minor patients were satisfied with the cosmetic improvement. Dermoid excision combined with transplantation of SMILE-derived lenticule patches using fibrin glue is a safe and effective novel tectonic keratoplasty procedure for corneal dermoid.

Identifying Health-Related Social and Unintentional Injury Risks Among Patients Presenting to a Pediatric Urgent Care.

Many families seek medical care at pediatric urgent care centers. The objective of this study was to determine social and unintentional injury risks reported by these families. This cross-sectional study surveyed a convenience sample of guardians of patients 1 to 5 years of age presenting to our pediatric urgent care, 9/10/21 to 2/25/22. Outcomes were the number of reported social and unintentional injury risks. Predictors and covariates included child and parent demographic characteristics and a neighborhood socioeconomic deprivation index. Chi-square, Student's t test, Pearson's correlation tests, and multinominal regression were used. A total of 273 guardians (and children) were included; 245 of guardians (89.7%) were female; 137 (50.2%) of included children identified as Black. Approximately 60% reported ≥1 social risk; 31.5% reported ≥3. Approximately 90% reported ≥1 unintentional injury risk; 57.9% reported ≥3. There were significant associations between social risk presence and Black race, public/no insurance, and neighborhood deprivation (all P < .05). There were no significant associations between unintentional injury risks and assessed predictors. Black guardians were more likely than those of other races to report a greater number of social risks (adjusted odds ratio [AOR] 2.90, 95% confidence interval [CI] 1.50, 5.58 for ≥3 vs 0 risk). Children with public/no insurance compared to private insurance were more likely to experience a greater number of social risks (AOR 3.34, 95% CI 1.42, 7.84 for ≥3 vs 0 risks). Many presenting to pediatric urgent cares experience social and unintentional injury risks. Risk identification may guide equitable responses.

Quasi-experimental Controlled Study on the Effect of Autism Resource Clinic Guardian Attendance at a Military Treatment Facility.

Autism spectrum disorder (ASD) is a complex neurodevelopmental condition that requires multidisciplinary care. Evidence-based practice indicates that early intervention may improve long-term ASD outcomes. The Autism Resource Clinic (ARC) provides an educational session for guardians empowering them to build a personalized ASD team for their child. We examined the impact of guardian attendance of an ARC at a Military Treatment Facility on time to initiation of patient services and guardian stress level. A quasi-experimental controlled study was conducted comparing a group of guardians attending the ARC with a group of guardians not attending the ARC following a child's initial ASD diagnosis. ARC speakers included medical, county/state, community/military, and advocacy experts. Surveys were completed at diagnosis, 1, 2, and 3 mo postdiagnosis. Initiation of patient services and Parental Stress Scale scores were compared between groups using independent samples t-test, chi-square tests, or nonparametric tests, as appropriate. Use of Applied Behavioral Analysis was significantly higher among ARC attendees vs. nonattendees (73.3% vs. 33.3%, P = 0.028). County early intervention was more frequent among ARC attendees versus nonattendees (40% vs. 13.3%, P = 0.09). Of borderline significance, median time to initiation of genetics services was greater in ARC attendees vs. nonattendees (106 vs. 65.5, P = 0.10). The two groups did not differ on changes in Parental Stress Scale score from baseline to follow-up months 1, 2, or 3. Although ARC did not influence time to initiation of patient services or guardian stress level, attendance of ARC was associated with more frequent use of Applied Behavioral Analysis services and county early intervention services. This pilot study is unique as it targets guardians of ASD patients within military treatment facilities. Study limitations include data collection during the coronavirus disease 2019 pandemic, sequential evaluation of experimental and control groups, sample size and generalizability. A large, multicenter, randomized controlled trial is required to better assess the impact of this educational opportunity among military populations.

Validity and Reliability of the Topical Corticosteroid Phobia (TOPICOP©) Questionnaire: Thai Version

Objective: To determine the validity and reliability of the Thai version of the Topical Corticosteroid Phobia (TOPICOP©) questionnaire, which is used to evaluate topical corticosteroid (TCS) phobia in atopic dermatitis (AD). Materials &amp; Methods: The translation process and assessment of content validity were undertaken step-by-step. Adult patients with AD and the guardians of pediatric patients with AD completed the questionnaire twice, 2 weeks apart to test the reliability. Results: We enrolled 30 adult patients with AD and 30 caretakers of pediatric patients with AD in this study. The Index of Item-Objective Congruence (IOC) was 0.9, indicating high validity. Test-retest reliability using Pearson correlation coefficient was tested, with r 0.938 (p &lt;0.001). The Cronbach’s alpha coefficient showed reliable internal consistency, with 0.691 and 0.734, respectively. Conclusion: The Thai version of the TOPICOP© is valid, reliable, and feasible for assessing TCS phobia in patients with AD and their caretakers of pediatric patients with AD.

Application of 3D printing technology for pre-operative evaluation, education and informed consent in pediatric retroperitoneal tumors

To investigate usefulness of 3D printing for preoperative evaluations, student and resident education, and communication with parents or guardians of patients with pediatric retroperitoneal tumors. Ten patients planning retroperitoneal tumor resection between March and November 2019 were included. Preoperative computed tomography (CT) images were used for 3D reconstruction and printing. Surveyed items were understanding of preoperative lesions with 3 different modules (CT, 3D reconstruction, and 3D printing) by students, residents, and specialists; satisfaction of specialists; and comprehension by guardians after preoperative explanations with each module. The median age at operation was 4.2 years (range, 1.8–18.1), and 8 patients were diagnosed with neuroblastoma. The 3D printing was the most understandable module for all groups (for students, residents, and specialists, P = 0.002, 0.027, 0.013, respectively). No significant intraoperative adverse events or immediate postoperative complications occurred. All specialists stated that 3D printing enhanced their understanding of cases. Guardians answered that 3D printing were the easiest to comprehend among the 3 modules (P = 0.007). Use of 3D printing in treatment of pediatric patients with retroperitoneal tumors was useful for preoperative planning, education, and parental explaining with obtaining informed consents.

Governance of Violence Risk in Patients with Severe Mental Disorders: From a Case of a Schizophrenic’s Filicide

Schizophrenia is a chronic, prolonged illness with a significant tendency to relapse and a high disease burden. Patients are often affected by psychotic symptoms and commit violent assaults that manifest as criminal acts. At the same time, such patients generally have poor medication adherence, which also makes them more likely to commit crimes. In our case, a single mother with a history of psychiatric illness strangled her 4-year-old biological son to death with a rope, put the body in a bathtub and divided it, ate some of the victim’s organs; the results of her forensic mental health identification indicated she was in a period of illness at the time of the offense and did not have the competence for criminal responsibility. Medication adherence is an important factor affecting relapse in patients with schizophrenia. Although new medications have been introduced and researchers have been improving medication adherence through many ways such as patient education and family therapy since the 1980s, the level of medication adherence is still poor, with a nonadherence rate of about 50%. This report suggests that in practice, attention should be given to improving patients’ medication adherence, guardians of patients and their communities should strengthen their monitoring and care, including knowing the patients’ medication adherence and monitoring them to take their medication as prescribed, together with systematic psychotherapy for patients to prevent them from relapsing and committing violent attacks. Besides, when assessing the patient’s risk of violence, the realistic factors in crime motives and the impact of guardians (family) should be taken into account to evaluate the risk of violence objectively and comprehensively. A final point is that social support for patients with mental disorders and their families should be improved.

Dificuldades alimentares em pacientes com Fenilcetonúria

ABSTRACT Purpose to analyze the results of an instrument that aims to assist in the identification of feeding difficulties in children with Phenylketonuria (PKU), compared to children without the disease. Methods cross-sectional, controlled study with a convenience sample composed of patients with PKU and healthy individuals, matched for age and sex. The invitation to participate in the study was made through the dissemination of the research on social networks. The answers were provided by the guardians, 46 controls and 28 patients agreed to participate. In addition to these, 13 guardians of patients being followed up at an Outpatient Clinic for the Treatment of Inborn Errors of Metabolism were invited by phone call, and 12 accepted the invitation. All participants answered the Brazilian Infant Feeding Scale (in Portuguese Escala Brasileira de Alimentação Infantil (EBAI)) electronically. Results the study included 86 participants, 40 patients (median of age = 2 years; interquartile range (IQR) = 2 - 4) and 46 controls (median of age = 3.5 years; IQR = 2 - 5.25). Ten (25%) patients and 13 (28.3%) controls had suspicion of feeding difficulties, demonstrating a similar frequency of feeding difficulties between groups. The study found that PKU patients had less feed autonomy (p = 0.005), were less breastfed (p = 0.002) and used more baby’s bottle than controls (p = 0.028). Conclusion the frequency of feeding difficulties reported by caregivers was similar between the comparison groups, but children with PKU had less feed autonomy, were less breastfed and used more baby’s bottles when compared to children without the disease.

A Structural Relationship Analysis on Occupational Therapist's Main Duties Recognized by Guardians of Dementia Patients

A Structural Relationship Analysis on Occupational Therapist's Main Duties Recognized by Guardians of Dementia Patients

Spiritual Care in the NICU from the Parents’ Perspective: A Mixed Methods Study

Objective: The importance of whole person care interventions is increasingly appreciated in the literature. Spiritual care is one of these dimensions and has been desired by a large percentage of clinical populations in critical care situations. A typical assumption is that spiritual care would be provided by chaplains. There is limited research exploring parents’ perspectives on spiritual care from the medical team in general and from physicians particularly. The objective of this study was to further elucidate the parent experience on receiving spiritual care from varied members of the medical team. Methods: An anonymous survey was distributed to parents and caregivers at a single institution. A smaller subset of parents were further interviewed in order to obtain qualitative data which was analyzed using a general inductive approach. Results: Quantitative and qualitative data were collected from the caregivers and legal guardians of NICU patients in the form of 108 quantitative surveys and 16 qualitative interviews. Parents indicated openness to receiving spiritual care from various members of the medical team and did not have strong barriers to receiving various types of spiritual care, nor significant barriers to receiving spiritual care from those of differing faiths or spiritual beliefs. Conclusion: Guardians typically expect spiritual care from chaplains, however this study demonstrates caregivers also appreciate spiritual care from other members of the healthcare team including their physician. This validates the importance of educating physicians in how to provide spiritual care for families in critical care settings.