%0 Journal Article %@ 2561-6722 %I JMIR Publications %V 7 %N %P e60330 %T Red Blood Cell Transfusion for Incidence of Retinopathy of Prematurity: Prospective Multicenter Cohort Study %A Wang,Xiaoling %A Rao,Rui %A Li,Hua %A Lei,Xiaoping %A Dong,Wenbin %K red blood cell transfusion %K retinopathy of prematurity %K VPI %K very preterm infants %K ROP %K visual impairment %K blindness %K RBC %K red blood cell %D 2024 %7 18.9.2024 %9 %J JMIR Pediatr Parent %G English %X Background: Retinopathy of prematurity (ROP) is a leading cause of visual impairment and blindness in preterm infants. Objective: This study sought to investigate the association between red blood cell (RBC) transfusion and ROP in very preterm infants (VPIs) to inform clinical strategies for ROP prevention and treatment. Methods: We designed a prospective multicenter cohort study that included VPIs and follow-up data from January 2017 to December 2022 at 3 neonatal clinical medicine centers. They were categorized into a transfusion group (infants who received an RBC transfusion within 4 wk) and a nontransfusion group. The relationship between RBC transfusion and ROP incidence was assessed using binary logistic regression, with subgroup analyses based on gestational age, birth weight, sex, and sepsis status. Inverse probability of treatment weighting and propensity score matching were applied to account for all potential confounding factors that could affect ROP development, followed by sensitivity analysis. Results: The study included 832 VPIs, including 327 in the nontransfusion group and 505 in the transfusion group. The transfusion group had a lower average birth weight and gestational age and a greater incidence of ROP, ≥stage 2 ROP, and severe ROP. Logistic regression analysis revealed that the transfusion group had a significantly greater risk of ROP (adjusted odds ratio [aOR] 1.70, 95% CI 1.14‐2.53, P=.009) and ≥stage 2 ROP (aOR 1.68, 95% CI 1.02‐2.78, P=.04) but not severe ROP (aOR 1.75, 95% CI 0.61‐5.02, P=.30). The trend analysis also revealed an increased risk of ROP with an increasing number of transfusions and a larger volume of blood transfused (P for trend<.001). Subgroup analyses confirmed a consistent trend, with the transfusion group at a higher risk for ROP across all subgroups. Inverse probability of treatment weighting and propensity score matching analyses supported the initial findings. Conclusions: For VPIs, RBC transfusion significantly increases the risk of ROP, and the risk increases with an increasing number of transfusions and volume of blood transfused. %R 10.2196/60330 %U https://pediatrics.jmir.org/2024/1/e60330 %U https://doi.org/10.2196/60330 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 10 %N %P e53879 %T Association Between Particulate Matter Exposure and Preterm Birth in Women With Abnormal Preconception Thyrotropin Levels: Large Cohort Study %A Xu,Ting %A Ni,Haobo %A Cai,Xiaoyan %A Dai,Tingting %A Wang,Lingxi %A Xiao,Lina %A Zeng,Qinghui %A Yu,Xiaolin %A Han,Lu %A Guo,Pi %K PM2.5 %K particulate matter with an aerodynamic diameter of ≤2.5 μm %K thyroid stimulating hormone %K preterm birth %K cohort study %K preconception %D 2024 %7 2.8.2024 %9 %J JMIR Public Health Surveill %G English %X Background: Prior research has linked exposure to particulate matter with an aerodynamic diameter of ≤2.5 μm (PM2.5) with preterm birth (PTB). However, the modulating effect of preconception thyroid stimulating hormone (TSH) levels on the relationship between PM2.5 exposure and PTB has not been investigated. Objective: This study aimed to assess whether preconception TSH levels modulate the impact of PM2.5 exposure on PTB. Methods: This cohort study was conducted in Guangdong, China, as a part of the National Free Pre-Pregnancy Checkups Project. PM2.5 exposure was estimated by using the inverse distance weighting method. To investigate the moderating effects of TSH levels on trimester-specific PM2.5 exposure and PTB, we used the Cox proportional hazards model. Additionally, to identify the susceptible exposure windows for weekly specific PM2.5 exposure and PTB, we built distributed lag models incorporating Cox proportional hazards models. Results: A total of 633,516 women who delivered between January 1, 2014, to December 31, 2019, were included. In total, 34,081 (5.4%) of them had abnormal preconception TSH levels. During the entire pregnancy, each 10-μg/m3 increase in PM2.5 was linked to elevated risks of PTB (hazard ratio [HR] 1.559, 95% CI 1.390‐1.748), early PTB (HR 1.559, 95% CI 1.227‐1.980), and late PTB (HR 1.571, 95% CI 1.379‐1.791) among women with abnormal TSH levels. For women with normal preconception TSH levels, PM2.5 exposure during the entire pregnancy was positively associated with the risk of PTB (HR 1.345, 95% CI 1.307‐1.385), early PTB (HR 1.203, 95% CI 1.126‐1.285), and late PTB (HR 1.386, 95% CI 1.342‐1432). The critical susceptible exposure windows were the 3rd-13th and 28th-35th gestational weeks for women with abnormal preconception TSH levels, compared to the 1st-13th and 21st-35th gestational weeks for those with normal preconception TSH levels. Conclusions: PM2.5 exposure was linked with a higher PTB risk, particularly in women with abnormal preconception TSH levels. PM2.5 exposure appears to have a greater effect on pregnant women who are in the early or late stages of pregnancy. %R 10.2196/53879 %U https://publichealth.jmir.org/2024/1/e53879 %U https://doi.org/10.2196/53879 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 10 %N %P e48815 %T Spatiotemporal Characteristics and Risk Factors for All and Severity-Specific Preterm Births in Southern China, 2014-2021: Large Population-Based Study %A Miao,Huazhang %A He,Hui %A Nie,Chuan %A Ren,Jianbing %A Luo,Xianqiong %+ Department of Pediatric Endocrinology and Inherited Metabolic Diseases, Guangdong Women and Children Hospital, No. 521, Xingnan Road, Panyu District, Guangzhou, 510623, China, 86 39151822, luoxqgz@126.com %K preterm birth %K spatiotemporal %K incidence %K risk %K neonatal %K infant %K pregnancy health %K pregnancy complication %K pregnancy %K birth defect %K birth defects %K obstetric labor %K premature %D 2024 %7 18.6.2024 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: The worldwide incidence of preterm births is increasing, and the risks of adverse outcomes for preterm infants significantly increase with shorter gestation, resulting in a substantial socioeconomic burden. Limited epidemiological studies have been conducted in China regarding the incidence and spatiotemporal trends of preterm births. Seasonal variations in risk indicate the presence of possible modifiable factors. Gender influences the risk of preterm birth. Objective: This study aims to assess the incidence rates of preterm birth, very preterm birth, and extremely preterm birth; elucidate their spatiotemporal distribution; and investigate the risk factors associated with preterm birth. Methods: We obtained data from the Guangdong Provincial Maternal and Child Health Information System, spanning from January 1, 2014, to December 31, 2021, pertaining to neonates with gestational ages ranging from 24 weeks to 42 weeks. The primary outcome measures assessed variations in the rates of different preterm birth subtypes over the course of the study, such as by year, region, and season. Furthermore, we examined the relationship between preterm birth incidence and per capita gross domestic product (GDP), simultaneously analyzing the contributing risk factors. Results: The analysis incorporated data from 13,256,743 live births. We identified 754,268 preterm infants and 12,502,475 full-term infants. The incidences of preterm birth, very preterm birth, and extremely preterm birth were 5.69 per 100 births, 4.46 per 1000 births, and 4.83 per 10,000 births, respectively. The overall incidence of preterm birth increased from 5.12% in 2014 to 6.38% in 2021. The incidence of extremely preterm birth increased from 4.10 per 10,000 births in 2014 to 8.09 per 10,000 births in 2021. There was a positive correlation between the incidence of preterm infants and GDP per capita. In more developed economic regions, the incidence of preterm births was higher. Furthermore, adjusted odds ratios revealed that advanced maternal age, multiple pregnancies, and male infants were associated with an increased risk of preterm birth, whereas childbirth in the autumn season was associated with a protective effect against preterm birth. Conclusions: The incidence of preterm birth in southern China exhibited an upward trend, closely linked to enhancements in the care capabilities for high-risk pregnant women and critically ill newborns. With the recent relaxation of China's 3-child policy, coupled with a temporary surge in advanced maternal age and multiple pregnancies, the risk of preterm birth has risen. Consequently, there is a pressing need to augment public health investments aimed at mitigating the risk factors associated with preterm birth, thereby alleviating the socioeconomic burden it imposes. %M 38888944 %R 10.2196/48815 %U https://publichealth.jmir.org/2024/1/e48815 %U https://doi.org/10.2196/48815 %U http://www.ncbi.nlm.nih.gov/pubmed/38888944 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 10 %N %P e53860 %T Trend of Mortality Due to Congenital Anomalies in Children Younger Than 5 Years in Eastern China, 2012-2021: Surveillance Data Analysis %A Dong,Wen-Hong %A Guo,Jun-Xia %A Wang,Lei %A Zheng,Shuang-Shuang %A Zhu,Bing-Quan %A Shao,Jie %+ Department of Child Health Care, Children’s Hospital, Zhejiang University School of Medicine, No. 3333 Binsheng Road, Binjiang District, Hangzhou, 310052, China, 86 571 88873597, ispring2003@163.com %K under-five years %K congenital anomalies %K mortality %K death cause %K rank %D 2024 %7 3.6.2024 %9 Rapid Surveillance Report %J JMIR Public Health Surveill %G English %X Background: As one of the leading causes of child mortality, deaths due to congenital anomalies (CAs) have been a prominent obstacle to meet Sustainable Development Goal 3.2. Objective: We conducted this study to understand the death burden and trend of under-5 CA mortality (CAMR) in Zhejiang, one of the provinces with the best medical services and public health foundations in Eastern China. Methods: We used data retrieved from the under-5 mortality surveillance system in Zhejiang from 2012 to 2021. CAMR by sex, residence, and age group for each year was calculated and standardized according to 2020 National Population Census sex- and residence-specific live birth data in China. Poisson regression models were used to estimate the annual average change rate (AACR) of CAMR and to obtain the rate ratio between subgroups after adjusting for sex, residence, and age group when appropriate. Results: From 2012 to 2021, a total of 1753 children died from CAs, and the standardized CAMR declined from 121.2 to 62.6 per 100,000 live births with an AACR of –9% (95% CI –10.7% to –7.2%; P<.001). The declining trend was also observed in female and male children, urban and rural children, and neonates and older infants, and the AACRs were –9.7%, –8.5%, –8.5%, –9.2%, –12%, and –6.3%, respectively (all P<.001). However, no significant reduction was observed in children aged 1-4 years (P=.22). Generally, the CAMR rate ratios for male versus female children, rural versus urban children, older infants versus neonates, and older children versus neonates were 1.18 (95% CI 1.08-1.30; P<.001), 1.20 (95% CI 1.08-1.32; P=.001), 0.66 (95% CI 0.59-0.73; P<.001), and 0.20 (95% CI 0.17-0.24; P<.001), respectively. Among all broad CA groups, circulatory system malformations, mainly deaths caused by congenital heart diseases, accounted for 49.4% (866/1753) of deaths and ranked first across all years, although it declined yearly with an AACR of –9.8% (P<.001). Deaths due to chromosomal abnormalities tended to grow in recent years, although the AACR was not significant (P=.90). Conclusions: CAMR reduced annually, with cardiovascular malformations ranking first across all years in Zhejiang, China. Future research and practices should focus more on the prevention, early detection, long-term management of CAs and comprehensive support for families with children with CAs to improve their survival chances. %M 38829691 %R 10.2196/53860 %U https://publichealth.jmir.org/2024/1/e53860 %U https://doi.org/10.2196/53860 %U http://www.ncbi.nlm.nih.gov/pubmed/38829691 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 10 %N %P e52456 %T Mutual Associations of Exposure to Ambient Air Pollutants in the First 1000 Days of Life With Asthma/Wheezing in Children: Prospective Cohort Study in Guangzhou, China %A Tian,Fenglin %A Zhong,Xinqi %A Ye,Yufeng %A Liu,Xiaohan %A He,Guanhao %A Wu,Cuiling %A Chen,Zhiqing %A Zhu,Qijiong %A Yu,Siwen %A Fan,Jingjie %A Yao,Huan %A Ma,Wenjun %A Dong,Xiaomei %A Liu,Tao %+ Department of Public Health and Preventive Medicine, School of Medicine, Jinan University, Number 601, West Huangpu Avenue, Guangzhou, 510632, Guangdong, China, 86 18927588462, gztt_2002@163.com %K pregnancy %K air pollution %K asthma %K wheezing %K birth cohort %K children %D 2024 %7 17.4.2024 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: The first 1000 days of life, encompassing pregnancy and the first 2 years after birth, represent a critical period for human health development. Despite this significance, there has been limited research into the associations between mixed exposure to air pollutants during this period and the development of asthma/wheezing in children. Furthermore, the finer sensitivity window of exposure during this crucial developmental phase remains unclear. Objective: This study aims to assess the relationships between prenatal and postnatal exposures to various ambient air pollutants (particulate matter 2.5 [PM2.5], carbon monoxide [CO], sulfur dioxide [SO2], nitrogen dioxide [NO2], and ozone [O3]) and the incidence of childhood asthma/wheezing. In addition, we aimed to pinpoint the potential sensitivity window during which air pollution exerts its effects. Methods: We conducted a prospective birth cohort study wherein pregnant women were recruited during early pregnancy and followed up along with their children. Information regarding maternal and child characteristics was collected through questionnaires during each round of investigation. Diagnosis of asthma/wheezing was obtained from children’s medical records. In addition, maternal and child exposures to air pollutants (PM2.5 CO, SO2, NO2, and O3) were evaluated using a spatiotemporal land use regression model. To estimate the mutual associations of exposure to mixed air pollutants with the risk of asthma/wheezing in children, we used the quantile g-computation model. Results: In our study cohort of 3725 children, 392 (10.52%) were diagnosed with asthma/wheezing. After the follow-up period, the mean age of the children was 3.2 (SD 0.8) years, and a total of 14,982 person-years were successfully followed up for all study participants. We found that each quartile increase in exposure to mixed air pollutants (PM2.5, CO, SO2, NO2, and O3) during the second trimester of pregnancy was associated with an adjusted hazard ratio (HR) of 1.24 (95% CI 1.04-1.47). Notably, CO made the largest positive contribution (64.28%) to the mutual effect. After categorizing the exposure according to the embryonic respiratory development stages, we observed that each additional quartile of mixed exposure to air pollutants during the pseudoglandular and canalicular stages was associated with HRs of 1.24 (95% CI 1.03-1.51) and 1.23 (95% CI 1.01-1.51), respectively. Moreover, for the first year and first 2 years after birth, each quartile increment of exposure to mixed air pollutants was associated with HRs of 1.65 (95% CI 1.30-2.10) and 2.53 (95% CI 2.16-2.97), respectively. Notably, SO2 made the largest positive contribution in both phases, accounting for 50.30% and 74.70% of the association, respectively. Conclusions: Exposure to elevated levels of mixed air pollutants during the first 1000 days of life appears to elevate the risk of childhood asthma/wheezing. Specifically, the second trimester, especially during the pseudoglandular and canalicular stages, and the initial 2 years after birth emerge as crucial susceptibility windows. Trial Registration: Chinese Clinical Trial Registry ChiCTR-ROC-17013496; https://tinyurl.com/2ctufw8n %M 38631029 %R 10.2196/52456 %U https://publichealth.jmir.org/2024/1/e52456 %U https://doi.org/10.2196/52456 %U http://www.ncbi.nlm.nih.gov/pubmed/38631029 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 1 %P e28895 %T Exploring the Experiences of Family Caregivers of Children With Special Health Care Needs to Inform the Design of Digital Health Systems: Formative Qualitative Study %A Tennant,Ryan %A Allana,Sana %A Mercer,Kate %A Burns,Catherine M %+ Department of Systems Design Engineering, Faculty of Engineering, University of Waterloo, 200 University Ave W, Waterloo, ON, N2L 3G1, Canada, 1 5198884567, ryan.tennant@uwaterloo.ca %K children %K caregiver %K digital health %K home care %K qualitative research %K technology %D 2022 %7 5.1.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Family caregivers of children with special health care needs (CSHCN) are responsible for managing and communicating information regarding their child’s health in their homes. Although family caregivers currently capture information through nondigital methods, digital health care applications are a promising solution for supporting the standardization of information management in complex home care across their child’s health care team. However, family caregivers continue to use paper-based methods where the adoption of digital health care tools is low. With the rise in home care for children with complex health care needs, it is important to understand the caregiving work domain to inform the design of technologies that support child safety in the home. Objective: The aim of this study is to explore how family caregivers navigate information management and communication in complex home care for CSHCN. Methods: This research is part of a broader study to explore caregivers’ perspectives on integrating and designing digital health care tools for complex home care. The broader study included interviews and surveys about designing a voice user interface to support home care. This formative study explored semistructured interview data with family caregivers of CSHCN about their home care situations. Inductive thematic analysis was used to analyze the information management and communication processes. Results: We collected data from 7 family caregivers in North America and identified 5 themes. First, family caregivers were continuously learning to provide care. They were also updating the caregiver team on their child’s status and teaching caregivers about their care situation. As caregiving teams grew, they found themselves working on communicating with their children’s educators. Beyond the scope of managing their child’s health information, family caregivers also navigated bureaucratic processes for their child’s home care. Conclusions: Family caregivers’ experiences of caring for CSHCN differ contextually and evolve as their child’s condition changes and they grow toward adulthood. Family caregivers recorded information using paper-based tools, which did not sufficiently support information management. They also experienced significant pressure in summarizing information and coordinating 2-way communication about the details of their child’s health with caregivers. The design of digital health care systems and tools for complex home care may improve care coordination if they provide an intuitive method for information interaction and significant utility by delivering situation-specific insights and adapting to unique and dynamic home care environments. Although these findings provide a foundational understanding, there is an opportunity for further research to generalize the findings. %M 34989692 %R 10.2196/28895 %U https://formative.jmir.org/2022/1/e28895 %U https://doi.org/10.2196/28895 %U http://www.ncbi.nlm.nih.gov/pubmed/34989692 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 12 %P e29687 %T Initial Feasibility of the “Families Moving Forward Connect” Mobile Health Intervention for Caregivers of Children With Fetal Alcohol Spectrum Disorders: Mixed Method Evaluation Within a Systematic User-Centered Design Approach %A Petrenko,Christie Lynn McGee %A Kautz-Turnbull,Carson Christine %A Roth,Alicia Rose %A Parr,Jennifer Elizabeth %A Tapparello,Cristiano %A Demir,Utku %A Olson,Heather Carmichael %+ Mt. Hope Family Center, University of Rochester, 187 Edinburgh St, Rochester, NY, 14608, United States, 1 585 275 2991, christie.petrenko@rochester.edu %K fetal alcohol spectrum disorders %K fetal alcohol syndrome %K intervention %K mobile health %K mHealth %K parenting %K children %K prenatal alcohol %K digital health %K user-centered design %K mobile phone %D 2021 %7 2.12.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Fetal alcohol spectrum disorders (FASD) are prevalent neurodevelopmental conditions. Significant barriers prevent family access to FASD-informed care. To improve accessibility, a scalable mobile health intervention for caregivers of children with FASD is under development. The app, called Families Moving Forward (FMF) Connect, is derived from the FMF Program, a parenting intervention tailored for FASD. FMF Connect has 5 components: Learning Modules, Family Forum, Library, Notebook, and Dashboard. Objective: This study assesses the feasibility of FMF Connect intervention prototypes. This includes examining app usage data and evaluating user experience to guide further refinements. Methods: Two rounds of beta-testing were conducted as part of a systematic approach to the development and evaluation of FMF Connect: (1) an iOS prototype was tested with 20 caregivers of children (aged 3-17 years) with FASD and 17 providers for the first round (April-May 2019) and (2) iOS and Android prototypes were tested with 25 caregivers and 1 provider for the second round (November-December 2019). After each 6-week trial, focus groups or individual interviews were completed. Usage analytics and thematic analysis were used to address feasibility objectives. Results: Across beta-test trials, 84% (38/45) of caregivers and 94% (17/18) of providers installed the FMF Connect app. Technological issues were tracked in real time with updates to address problems and expand app functionalities. On use days, caregivers averaged 20 minutes using the app; most of the time was spent watching videos in Learning Modules. Caregiver engagement with the Learning Modules varied across 5 usage pattern tiers. Overall, 67% (30/45) of caregivers posted at least once in the Family Forum. Interviews were completed by 26 caregivers and 16 providers. App evaluations generally did not differ according to usage pattern tier or demographic characteristics. Globally, app users were very positive, with 2.5 times more positive- than negative-coded segments across participants. Positive evaluations emphasized the benefits of accessible information and practical utility of the app. Informational and video content were described as especially valuable to caregivers. A number of affective and social benefits of the app were identified, aligning well with the caregivers’ stated motivators for app use. Negative evaluations of user experience generally emphasized technical and navigational aspects. Refinements were made on the basis of feedback during the first beta test, which were positively received during the second round. Participants offered many valuable recommendations for continuing app refinement, which is useful in improving user experience. Conclusions: The results demonstrate that the FMF Connect intervention is acceptable and feasible for caregivers raising children with FASD. They will guide subsequent app refinement before large-scale randomized testing. This study used a systematic, user-centered design approach for app development and evaluation. The approach used here may illustrate a model that can broadly inform the development of mobile health and digital parenting interventions. %M 34860661 %R 10.2196/29687 %U https://formative.jmir.org/2021/12/e29687 %U https://doi.org/10.2196/29687 %U http://www.ncbi.nlm.nih.gov/pubmed/34860661 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 4 %N 4 %P e18483 %T Using Social Media as a Research Tool for a Bespoke Web-Based Platform for Stakeholders of Children With Congenital Anomalies: Development Study %A Sinclair,Marlene %A McCullough,Julie E M %A Elliott,David %A Braz,Paula %A Cavero-Carbonell,Clara %A Dornan,Lesley %A Jamry-Dziurla,Anna %A João Santos,Ana %A Latos-Bieleńska,Anna %A Machado,Ausenda %A Páramo-Rodríguez,Lucía %+ Institute of Nursing and Health Research, Ulster University, Shore Road, Newtownabbey, Northern Ireland, BT37 0QB, United Kingdom, 44 02890368118, m.sinclair1@ulster.ac.uk %K Facebook %K YouTube %K Twitter %K social media %K metrics %K e-forum %K congenital anomalies %K coproduction %K COVID-19 %D 2021 %7 15.11.2021 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Limited research evidence exists on the development of web-based platforms for reciprocal communication, coproduction research, and dissemination of information among parents, professionals, and researchers. This paper provides learning and the outcomes of setting up a bespoke web-based platform using social media. Objective: This study aims to explore the establishment of a web-based, multicontextual research communication platform for parents and stakeholders of children with congenital anomalies using social media and to identify associated research and ethical and technical challenges. Methods: The ConnectEpeople e-forum was developed using social media platforms with a stakeholder engagement process. A multilevel approach was implemented for reciprocal engagement between parents of children with congenital anomalies, researchers, health care professionals, and other stakeholders using private and invisible and public Facebook groups, closed Twitter groups, and YouTube. Ethical approval was obtained from Ulster University. Results: Nonprofit organizations (N=128) were invited to engage with an initial response rate of 16.4% (21/128). Of the 105 parents contacted, 32 entered the private and invisible Facebook groups to participate in the coproduction research. Public Facebook page followers rose to 215, a total of 22 posts had an engagement of >10%, and 34 posts had a reach of over 100. Webinars included requested information on childhood milestones and behavior. YouTube coverage included 106 ConnectEpeople videos with 28,708 impressions. Project information was obtained from 35 countries. The highest Facebook activity occurred during the early morning hours. Achievement of these results required dedicated time management, social media expertise, creativity, and sharing knowledge to curate valuable content. Conclusions: Building and maintaining a multilayered online forum for coproduction and information sharing is challenging. Technical considerations include understanding the functionality and versatility of social media metrics. Social media offers valuable, easily accessible, quantitative, and qualitative data that can drive the reciprocal process of forum development. The identification and integration of the needs of the ConnectEpeople e-forum was a key driver in the dissemination of useful, meaningful, and accessible information. The necessary dedicated administration to respond to requests and posts and collate data required significant time and effort. Participant safety, the development of trust, and the maintenance of confidentiality were major ethical considerations. Discussions on social media platforms enabled parents to support each other and their children. Social media platforms are particularly useful in identifying common family needs related to early childhood development. This research approach was challenging but resulted in valuable outputs requiring further application and testing. This may be of particular importance in response to COVID-19 or future pandemics. Incorporating flexible, adaptable social media strategies into research projects is recommended to develop effective platforms for collaborative and impactful research and dissemination. %M 34779778 %R 10.2196/18483 %U https://pediatrics.jmir.org/2021/4/e18483 %U https://doi.org/10.2196/18483 %U http://www.ncbi.nlm.nih.gov/pubmed/34779778 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 10 %P e29199 %T Understanding the Associations of Prenatal Androgen Exposure on Sleep Physiology, Circadian Proteins, Anthropometric Parameters, Hormonal Factors, Quality of Life, and Sex Among Healthy Young Adults: Protocol for an International, Multicenter Study %A Kuczyński,Wojciech %A Wibowo,Erik %A Hoshino,Tetsuro %A Kudrycka,Aleksandra %A Małolepsza,Aleksandra %A Karwowska,Urszula %A Pruszkowska,Milena %A Wasiak,Jakub %A Kuczyńska,Aleksandra %A Spałka,Jakub %A Pruszkowska-Przybylska,Paulina %A Mokros,Łukasz %A Białas,Adam %A Białasiewicz,Piotr %A Sasanabe,Ryujiro %A Blagrove,Mark %A Manning,John %+ Department of Anatomy, School of Biomedical Sciences, University of Otago, 270 Great King St, Dunedin, 9016, New Zealand, 64 34704692, erik.wibowo@otago.ac.nz %K digit ratio %K sleep %K sex hormones %K testosterone %K estrogen %K circadian proteins %K circadian rhythm %K chronotype %K miRNA %D 2021 %7 6.10.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: The ratio of the second finger length to the fourth finger length (2D:4D ratio) is considered to be negatively correlated with prenatal androgen exposure (PAE) and positively correlated with prenatal estrogen. Coincidentally, various brain regions are sensitive to PAE, and their functions in adults may be influenced by the prenatal actions of sex hormones. Objective: This study aims to assess the relationship between PAE (indicated by the 2D:4D ratio) and various physiological (sex hormone levels and sleep-wake parameters), psychological (mental health), and sexual parameters in healthy young adults. Methods: This study consists of two phases. In phase 1, we will conduct a survey-based study and anthropometric assessments (including 2D:4D ratio and BMI) in healthy young adults. Using validated questionnaires, we will collect self-reported data on sleep quality, sexual function, sleep chronotype, anxiety, and depressive symptoms. In phase 2, a subsample of phase 1 will undergo polysomnography and physiological and genetic assessments. Sleep architecture data will be obtained using portable polysomnography. The levels of testosterone, estradiol, progesterone, luteinizing hormone, follicle-stimulating hormone, prolactin, melatonin, and circadian regulatory proteins (circadian locomotor output cycles kaput [CLOCK], timeless [TIM], and period [PER]) and the expression levels of some miRNAs will be measured using blood samples. The rest and activity cycle will be monitored using actigraphy for a 7-day period. Results: In Poland, 720 participants were recruited for phase 1. Among these, 140 completed anthropometric measurements. In addition, 25 participants joined and completed phase 2 data collection. Recruitment from other sites will follow. Conclusions: Findings from our study may help to better understand the plausible role of PAE in sleep physiology, mental health, and sexual quality of life in young adults. International Registered Report Identifier (IRRID): DERR1-10.2196/29199 %M 34612837 %R 10.2196/29199 %U https://www.researchprotocols.org/2021/10/e29199 %U https://doi.org/10.2196/29199 %U http://www.ncbi.nlm.nih.gov/pubmed/34612837 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 9 %P e25387 %T Informing the Development of a Standardized Clinical Definition of Neonatal Abstinence Syndrome: Protocol for a Modified-Delphi Expert Panel %A Khodyakov,Dmitry %A Jilani,Shahla M %A Dellva,Stephanie %A Faherty,Laura J %+ RAND Corporation, 1776 Main Street, PO Box 2138, Santa Monica, CA, United States, 1 310 393 0411 ext 6159, dmitry_khodyakov@rand.org %K Delphi %K ExpertLens %K expert panel %K neonatal abstinence syndrome %K neonatal opioid withdrawal syndrome %K neonatal withdrawal %K neonatal %K neonates %K opioid %K opioids %K withdrawal %K infants %K clinical %K newborn %K newborns %K perinatal %K postnatal %D 2021 %7 7.9.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Neonatal abstinence syndrome (NAS) is a postnatal withdrawal syndrome that most commonly results from prenatal opioid exposure. Every 15 minutes, an infant is born in the United States with signs of NAS. The field lacks a standardized clinical definition of NAS, complicating discussions on programmatic and policy development to support opioid-exposed mothers and infants. Objective: The goal of this paper is to describe a protocol for a systematic expert panel process to inform the development of a clinical definition of NAS. Methods: We will conduct two three-round online modified-Delphi panels using the ExpertLens system and will follow the recommendations for Conducting and REporting of DElphi Studies (CREDES). One panel will focus on developing key components of a clinical definition of NAS, and the second panel will focus on neonatal opioid withdrawal syndrome (NOWS), which is a term that has come into use to differentiate opioid-exposed infants from infants exposed to other substances in utero. However, there is lack of agreement on the precise clinical definition of NOWS and how it is distinct from or overlaps with NAS. Each panel will complete two rating rounds and a discussion round using a similar protocol. We will analyze all rating data descriptively and determine the presence of agreement within and between the two panels. We will also perform thematic analysis of the qualitative comments to contextualize the panel findings. Results: The panels were convened between October 29 and December 17, 2020. Their results were disseminated and discussed at a national conference on NAS that took place on March 17-18, 2021. Conclusions: A standardized clinical definition of NAS will help to better characterize NAS incidence and to design effective clinical, public health, and policy interventions to support opioid-exposed mother-infant dyads. International Registered Report Identifier (IRRID): DERR1-10.2196/25387 %M 34491203 %R 10.2196/25387 %U https://www.researchprotocols.org/2021/9/e25387 %U https://doi.org/10.2196/25387 %U http://www.ncbi.nlm.nih.gov/pubmed/34491203 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 8 %P e28619 %T Mucopolysaccharidosis Type I Disease Prevalence Among Patients With Idiopathic Short Stature in Saudi Arabia: Protocol for a Multicenter Cross-sectional Study %A Alsafadi,Danyah %A Ezzat,Aly %A Altamimi,Fatima %A ElBagoury,Marwan %A Olfat,Mohammed %A Saleh,Mohammed %A Roushdy,Sherif %A Aktham,Yahia %+ Medical Affairs Department, Sanofi-Genzyme, Gate C, 2nd floor, Nojoud Center, Tahlia St, Jeddah, Saudi Arabia, 966 544271984, marwanessam@hotmail.com %K mucopolysaccharidosis %K lysosomal storage disorders %K epidemiology %K Saudi Arabia %D 2021 %7 31.8.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Since the underlying cause of idiopathic short stature can indeed be undiagnosed mucopolysaccharidosis type I, it is critical to identify patients with mucopolysaccharidosis type I among screened patients with idiopathic short stature. Objective: The primary objective of this study is to determine the prevalence of mucopolysaccharidosis type I disease in a high-risk group (ie, patients with idiopathic short stature). Methods: We plan to perform a multicenter, cross-sectional screening study to primarily assess the prevalence of mucopolysaccharidosis type I disease in patients with idiopathic short stature. All eligible patients will be tested after obtaining written informed consent from their parents and guardians. Eligible patients will be recruited over 18 months from specialty care centers for pediatrics and genetics. Results: This protocol was approved by the Institutional Review Board of King Fahd Medical City and funded by Sanofi Genzyme Saudi Arabia. We expect to collect data from ≥800 patients, as determined by our sample size calculation. Conclusions: Saudi Arabia is the largest country in the Arabian Peninsula; it has a population of more than 28 million people. To date, there are no reliable data regarding the incidence and prevalence of mucopolysaccharidosis type I in Saudi Arabia; therefore, future multicenter studies will be needed. Further, the prevalence of an attenuated form of mucopolysaccharidosis type I is largely underestimated in Saudi Arabia due to the absence of an effective newborn screening program. Therefore, the implementation of a nationwide newborn screening program is essential for the accurate estimation of the burden of mucopolysaccharidosis and the early diagnosis of patients. International Registered Report Identifier (IRRID): PRR1-10.2196/28619 %M 34463634 %R 10.2196/28619 %U https://www.researchprotocols.org/2021/8/e28619 %U https://doi.org/10.2196/28619 %U http://www.ncbi.nlm.nih.gov/pubmed/34463634 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 8 %P e28148 %T Effect of Preconception Care Intervention on Maternal Nutritional Status and Birth Outcome in a Low-Resource Setting: Proposal for a Nonrandomized Controlled Trial %A Swain,Dharitri %A Begum,Jasmina %A Parida,Swayam Prangnan %+ College of Nursing, All India Institute of Medical Sciences, Sijua, Dumduma, Bhubaneswar, 751019, India, 91 94 38884272, dhari79@yahoo.co.in %K preconception care %K maternal nutritional status %K birth outcome %K paternal preconception health %K childbirth %K birth outcomes %K maternal and child health %K maternal health %K maternal and child nutrition %K health education %K pediatrics %D 2021 %7 16.8.2021 %9 Proposal %J JMIR Res Protoc %G English %X Background: The provision of preconception care approaches such as maternal assessments and education on healthy lifestyle (including physical activity, nutrition, and dietary supplements such as folic acid), general and sexual health, avoidance of high-risk behavior, and immunizations has been shown to identify and reduce the risk of adverse birth outcomes through appropriate management and preventive measures. Objective: The goal of the study is to determine the effect of an integrated preconception care intervention on delivery outcomes, which is a novel challenge for lowering unfavorable birth outcomes in India’s low-resource setting. The main objectives are to investigate the relationship of birth outcomes to both maternal and paternal preconception health and determine the effect of preconception care intervention on improvement of maternal nutritional status and reduction of the risk of adverse birth outcomes such as prematurity, low birth weight, and maternal and neonatal complications. Methods: A nonrandomized controlled trial design will be used for comparing 2 groups: preconception care with a standard maternal health care (MHC) program and an integrated MHC program (without preconception care). Two rural field areas of Khordha district, Odisha, will be selected for conducting the study. The study will enroll 782 married women between the ages of 18 and 35 years with their spouses, with 391 women in each group. The couples will receive preconception care based on their health circumstances, and they will be followed up at 3-month intervals before pregnancy. Following pregnancy, they will be followed up for 8 prenatal monitoring and care visits as well as 6 weeks after delivery as part of the standard MCH program. The preconception care intervention package includes couples counseling, contraceptive education and distribution, sex education, lifestyle modification, and nutritional supplementation of iron and folic acid, along with multivitamins if needed. Results: The proposal was approved by the institutional ethical committee for conducting the study in June 2020 (Ref No: T/EMF/Nursing/20/6). Participants were enrolled in phase 1 in April 2021, phase 2 of offering preconception services will begin in August 2021, and study outcomes will be measured from 2023 to 2024. Conclusions: Through preconception care and counseling, the eligible couples will recognize, embrace, and implement the actions to improve their preconception health. Finally, it is expected that maternal and paternal health will have a significant impact on enhancing maternal nutritional status and birth outcomes. Trial Registration: Clinical Trials Registry–India CTRI/2021/04/032836; http://ctri.nic.in/Clinicaltrials/pmaindet2.php?trialid=48239&EncHid=&userName=CTRI/2021/04/032836 International Registered Report Identifier (IRRID): PRR1-10.2196/28148 %M 34398798 %R 10.2196/28148 %U https://www.researchprotocols.org/2021/8/e28148 %U https://doi.org/10.2196/28148 %U http://www.ncbi.nlm.nih.gov/pubmed/34398798 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 4 %N 3 %P e22784 %T Experiences of Children With Osteogenesis Imperfecta in the Co-design of the Interactive Assessment and Communication Tool Sisom OI: Secondary Analysis of Qualitative Design Sessions %A Siedlikowski,Maia %A Curiale,Lianna %A Rauch,Frank %A Tsimicalis,Argerie %+ Ingram School of Nursing, McGill University, 680 Sherbrooke West, Suite #1800 Room 1835, Montreal, QC, H3A 2M7, Canada, 1 514 770 6069, argerie.tsimicalis@mcgill.ca %K child health %K symptom assessment %K communication %K mobile applications %K software %D 2021 %7 10.8.2021 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Children with osteogenesis imperfecta (OI) experience a diversity of symptoms that expose them to difficult physical, mental, and social challenges. Sisom (DHealth) is an interactive assessment and communication tool designed to help children aged 6-12 years with chronic conditions express their symptoms. Recently, the co-design of the Sisom OI paper prototype was launched by seeking the perspectives of end users, including children with OI and their clinicians. Objective: The aim of this study is to describe the experiences that children with OI were prompted to share with researchers during the co-design of the Sisom OI paper prototype. Methods: A secondary analysis of qualitative data was conducted at a university-affiliated, pediatric, orthopedic hospital. The data sources consisted of interview transcripts, drawings, field notes, and observations derived from interviewing 12 children with OI who participated in the co-design of the Sisom OI paper prototype. The themes and subthemes identified from the data sources were generated using qualitative description. Results: Three themes were identified. The first, Relating to Others, described the balance between feeling different versus feeling similar to other children. The subthemes were Common OI Experience, Feeling Different, and Feeling Just Like Others. The second, Relating to Their Condition, described children’s positive and negative interactions with their own condition and health care. The subthemes were Understanding Their Condition, Special Relationship with the Hospital, and Difficult Treatments and Procedures. The third, Reflecting on Capabilities, described children’s recognition of their strengths and limitations. The subthemes were Perceiving Limitations, Overcoming Isolation, and Celebrating Strengths. Conclusions: This co-design process provided children with OI the space to not only contribute to the development of the end product but also eloquently describe their experiences. These findings, based on the descriptions given by the children themselves, offer us a unique understanding of what it means to grow up with OI. %M 34383677 %R 10.2196/22784 %U https://pediatrics.jmir.org/2021/3/e22784 %U https://doi.org/10.2196/22784 %U http://www.ncbi.nlm.nih.gov/pubmed/34383677 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 5 %P e25244 %T Assessment of Outcomes of Immediately Loaded Dental Implants in Orofacial Cleft Patients: Protocol for a Single-Arm Clinical Trial %A Mallick,Rizwana %A Pisulkar,Sweta Kale %A Reddy,Srinivas Gosla %+ Department of Prosthodontics and Crown & Bridge, Faculty of Dentistry, Jamia Millia Islamia, Maulana Mohammad Ali Jauhar Marg, New Delhi, 110025, India, 91 9717499339, rmallick@jmi.ac.in %K clinical trial protocols %K dental implants %K dentistry %K immediate dental implant loading %K implant-supported dental prosthesis %K mouth rehabilitation %K oral health %K orofacial cleft %K quality of life %K rehabilitation research %K treatment outcome %D 2021 %7 5.5.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Orofacial cleft, one of the most common congenital deformities, presents with a plethora of defects, subjecting the patient to a multitude of treatments from a young age. Among the oral hard tissue problems, absence of a maxillary permanent tooth in the cleft region either due to congenital absence or extraction due to compromised prognosis is a common finding. Conventionally, the missing tooth is replaced using a removable or fixed partial denture; however, the treatment modality does not satisfactorily meet patient expectations. The most recent decade has seen increasing use of dental implants in the cleft region; however, the outcome of an immediately loaded dental implant is still elusive for orofacial cleft patients. Objective: This protocol is for a single-arm clinical trial aimed at determining the treatment outcome of immediately loaded dental implants in patients with a nonsyndromic orofacial cleft. Methods: Patients meeting the set criteria will be sequentially enrolled until a sample size of 30 dental implants is met and will undergo the proposed treatment according to the predecided protocol. All patients will be followed up at the designated time intervals to record various clinical and radiographic parameters. Implant success will be defined based on the criteria elucidated by Misch et al in the Pisa, Italy Consensus. A quality-of-life assessment questionnaire will also be recorded at the end of patient’s follow-up to determine their acceptance of the treatment. Results: A total of 30 dental implants will be placed in patients with a nonsyndromic orofacial cleft. Obtained results will be statistically analyzed to determine the treatment outcomes and success. Conclusions: This study will help determine the feasibility of immediately loaded dental implants in compromised bone sites such as those presented in cleft patients and will help in generating findings that can be used to fill the lacunae currently present in the holistic treatment of cleft patients. Trial Registration: Clinical Trial Registry of India CTRI/2020/09/027997; http://ctri.nic.in/Clinicaltrials/showallp.php?mid1=47659&EncHid=&userName=dental%20implants International Registered Report Identifier (IRRID): PRR1-10.2196/25244 %M 33949960 %R 10.2196/25244 %U https://www.researchprotocols.org/2021/5/e25244 %U https://doi.org/10.2196/25244 %U http://www.ncbi.nlm.nih.gov/pubmed/33949960 %0 Journal Article %@ 1929-073X %I JMIR Publications Inc. %V 4 %N 3 %P e14 %T Readability of Information Related to the Parenting of a Child With a Cleft %A De Felippe,Nanci %A Kar,Farnaz %+ School of Dentistry, Division of Orthodontics, University of Minnesota, Rm 6-320A, Moos Tower, 515 Delaware St SE, Minneapolis, MN, 55455, United States, 1 612 625 3652, farah049@umn.edu %K cleft lip %K cleft palate %K parenting %K readability %K literacy %D 2015 %7 08.07.2015 %9 Original Paper %J Interact J Med Res %G English %X Background: Many parents look to various sources for information about parenting when their child has a cleft lip and/or palate. More than 8 million Americans perform health-related searches every day on the World Wide Web. Furthermore, a significant number of them report feeling “overwhelmed” by the language and content of the information. Objective: The purpose of this study is to determine the readability of information related to parenting a child with cleft lip and/or palate. It was hypothesized that the readability of such materials would be at a level higher than 6th grade. Methods: In February of 2012, a Web-based search was conducted using the search engine Google for the terms “parenting cleft lip and palate.” Results: A total of 15 websites, 7 books, and 8 booklets/factsheets (N=30) entered the readability analysis. Flesch-Kincaid Grade Level, Fog Scale Level, and Simple Measure of Gobbledygook (SMOG) index scores were calculated. The reading level of the websites and books ranged from 8th to 9th and 9th to10th grade, respectively. The average reading level of the booklets/factsheets was 10th grade. Overall, the mean readability of the media resources analyzed was considered “hard to read.” No statistically significant mean difference was found for the readability level across websites, books, and booklets/factsheets (Kruskal-Wallis test, significance level .05). Conclusions: When considering websites, books, booklets, and factsheets analyzed, the average readability level was between 8th and 10th grade. With the US national reading level average at 8th grade and the general recommendation that health-related information be written at a 6th grade level, many parents may find the text they are reading too difficult to comprehend. Therefore, many families might be missing out on the opportunity to learn parenting practices that foster optimal psychosocial development of their children. %M 26155814 %R 10.2196/ijmr.4210 %U http://www.i-jmr.org/2015/3/e14/ %U https://doi.org/10.2196/ijmr.4210 %U http://www.ncbi.nlm.nih.gov/pubmed/26155814