Rationale and Design of CHD PULSE: Congenital Heart Disease Project to Understand Lifelong Survivor Experience.

BACKGROUND: With improved survival of adults with congenital heart disease (CHD) comes a need to understand the lifelong outcomes of this population. The aim of this paper is to describe the rationale and design of Congenital Heart Disease Project to Understand Lifelong Survivor Experience (CHD PULSE), a study to determine long-term medical, neurocognitive, and psychosocial outcomes among adults with a history of intervention for CHD and to identify factors associated with those outcomes. METHODS: CHD PULSE is a cross-sectional survey conducted from September 2021 to April 2023 among adults aged 18 and older with a history of at least one intervention for CHD at one of 11 participating U.S. centers in the Pediatric Cardiac Care Consortium. Participants with CHD were asked to complete a 99-question survey on a variety of topics including: demographics, surgeries, health insurance, health care, heart doctors, general health, height and weight, education and work history, reproductive health (for women only), and COVID-19. To construct a control group for the study, siblings of survey respondents were invited to complete a similar survey. Descriptive statistics for demographics, disease severity, center, and method of survey completion were computed for participants and controls. Comparisons were made between participants and non-participants to assess for response bias and between CHD participants and sibling controls to assess for baseline differences. RESULTS: Among the 14,322 eligible participants, there were 3133 respondents (21.9%) from 48 U.S. states with surveys returned for inclusion in the study. Sibling contact information was provided by 691 respondents, with surveys returned by 326 siblings (47.2%). The median age of participants was 32.8 years at time of survey completion, with an interquartile range of 27.2 years to 39.7 years and an overall range of 20.1 to 82.9 years. Participants were predominantly female (55.1%) and of non-Hispanic White race/ethnicity (87.1%). There were no differences between participants and non-participants regarding severity of CHD. Compared to non-participants, participants were more likely to be female, of older age, and be of non-Hispanic White race/ethnicity. Enrolled siblings were more likely to be female and slightly younger than participants. CONCLUSIONS: With surveys from 3133 participants from across the U.S., CHD PULSE is poised to provide keen insights into the lifelong journey of those living with CHD, extending beyond mere survival. These insights will offer opportunities for informing strategies to enhance and improve future outcomes for this population of patients.

Implications of Mothers' Social Networks for Risky Infant Sleep Practices.

OBJECTIVE: To describe the structure of networks in a cohort of mothers and to analyze associations of social network characteristics and norms with infant sleep practices. STUDY DESIGN: We recruited a prospective cohort of mothers with infants <6 months of age from January 2015 to December 2016. Mothers completed a survey about their personal social networks and infant care practices. Latent class analysis identified unobserved network types. Binary statistics and path analysis were performed. RESULTS: Overall, 402 mothers were surveyed. Latent class analysis identified 2 a priori unknown social network types: "exclusive" (restricted) and "expansive." Mothers who were black, younger, unmarried, less educated, and of lower socioeconomic status were more likely to have exclusive networks than expansive networks. Mothers with exclusive networks were more likely to be exposed to the norm of soft bedding (P = .002). Exposure to norms of non-supine infant placement, bedsharing, and soft bedding use within one's network was associated with engaging in these practices (P < .0001 for each). First-time mothers were more likely to pay attention to a non-supine norm and place infants in a non-supine position. Black mothers and first-time mothers were more likely to pay attention to the norm and use soft bedding. CONCLUSIONS: Both the type of networks mothers have and the norms regarding infant sleep practices that circulate within these networks differed by race. Network norms were strongly associated with infant sleep practices and may partially explain the racial disparity therein.

Mothers' Perceptions of the Internet and Social Media as Sources of Parenting and Health Information: Qualitative Study.

BACKGROUND: Traditionally, guidance and support to new parents have come from family, friends, and health care providers. However, the internet and social media are growing sources of guidance and support for parents. Little is known about how the internet and social media are used by parents of young infants and specifically about parental perceptions of the internet and social media as sources of parenting and infant health information. OBJECTIVE: The aim of this study was to explore, using qualitative methods, parental perceptions of the advantages and disadvantages of the internet and social media as sources of parenting and health information regarding their infant. METHODS: A total of 28 mothers participated in focus groups or individual interviews. Probing questions concerning parenting and health information sources were asked. Themes were developed in an iterative manner from coded data. RESULTS: The central themes were (1) reasons that mothers turn to the internet for parenting and health information, (2) cautionary advice about the internet, and (3) reasons that mothers turn to social media for parenting and health information. Mothers appreciated the ability to gather unlimited information and multiple opinions quickly and anonymously, but recognized the need to use reputable sources of information. Mothers also appreciated the immediacy of affirmation, support, and tailored information available through social media. CONCLUSIONS: The internet and social media are rapidly becoming important and trusted sources of parenting and health information that mothers turn to when making infant care decisions.

The Impact of Health Messages on Maternal Decisions About Infant Sleep Position: A Randomized Controlled Trial.

Sudden infant death syndrome (SIDS) rates in African-Americans are more than twice national rates, and historically, African-American parents are more likely than other groups to place infants prone, even when they are aware of supine sleep recommendations. Prior studies have shown African-Americans have low self-efficacy against SIDS but high self-efficacy against suffocation. This study aimed to determine the impact of a specific health message about suffocation prevention on African-American parental decisions regarding infant sleep position. We conducted a randomized controlled trial of 1194 African-American mothers, who were randomized to receive standard messages about safe sleep practices to reduce the risk of SIDS, or enhanced messages about safe sleep practices to prevent SIDS and suffocation. Mothers were interviewed about knowledge and attitude, self-efficacy and current infant care practices when infants were 2-3 weeks, 2-3 months and 5-6 months old. Analyses of covariance were conducted to estimate the change in knowledge, attitudes and practice in each group, and chi square tests were used to compare sleep position with each variable. Over the first 6 months, the proportion of African-American infants placed supine gradually decreased and was unchanged by enhanced education about SIDS, suffocation risk and sleep safety. While initially high self-efficacy against SIDS and suffocation correlated with supine positioning, by 5-6 months self-efficacy did not correspond to sleep position in either group.

Health Messaging and African-American Infant Sleep Location: A Randomized Controlled Trial.

Infant-parent bedsharing increases the risk of SIDS and other sleep-related deaths. Despite AAP recommendations to avoid bedsharing, public health efforts have been unsuccessful in changing behaviors. African-American infants are more than twice as likely to die from SIDS and other sleep-related deaths, and are also twice as likely to bedshare with their parents. Further, African-American parents have a high degree of self-efficacy with regards to preventing infant suffocation, but low self-efficacy with regards to SIDS risk reduction. It is unclear whether messages emphasizing suffocation prevention will decrease bedsharing. To evaluate the impact of specific health messages on African-American parental decisions regarding infant sleep location. We conducted a randomized, controlled trial of African-American mothers of infants. The control group received standard messaging emphasizing AAP-recommended safe sleep practices, including avoidance of bedsharing, for the purposes of SIDS risk reduction. The intervention group received enhanced messaging emphasizing safe sleep practices, including avoidance of bedsharing, for both SIDS risk reduction and suffocation prevention. Participants completed interviews at 2-3 weeks, 2-3 months, and 5-6 months after the infant's birth. 1194 mothers were enrolled in the study, and 637 completed all interviews. Bedsharing, both usually (aOR 1.005 [95 % CI 1.003, 1.006]) and last night (aOR 1.004 [95 % CI 1.002, 1.007]) increased slightly but statistically significantly with infant age (p < 0.001). Receipt of the enhanced message did not impact on sleep location. Maternal belief that bedsharing increased the risk of SIDS or suffocation declined over 6 months (p < 0.001) and did not differ by group assignment. African-American mothers who received an enhanced message about SIDS risk reduction and suffocation prevention were no less likely to bedshare with their infants. CLINICAL TRIALS REGISTRATION: Clinical Trials.gov identifier NCT01361880.

Impact of a Randomized Controlled Trial to Reduce Bedsharing on Breastfeeding Rates and Duration for African-American Infants.

Bedsharing is associated with both increased breastfeeding and increased risk of sudden and unexpected infant deaths. The objective was to determine impact of sleep location and counseling about sleep location on breastfeeding exclusivity and duration in African-Americans. 1194 mothers of newborns were randomized to receive messaging emphasizing either safe sleep practices to reduce SIDS risk or safe sleep practices to prevent SIDS/suffocation. Mothers completed four interviews in the 6 months after delivery. The most common sleep arrangement was roomsharing without bedsharing ("roomsharing"). Duration of any breastfeeding was 6.1 and 5.3 weeks for infants who usually bedshared or roomshared, respectively (p = 0.01). Duration of exclusive breastfeeding was 3.0 and 1.6 weeks for infants who usually bedshared or roomshared, respectively (p < 0.001). Group assignment did not affect breastfeeding duration. The most common sleep arrangement for African-American infants <6 months was roomsharing. An intervention designed to discourage bedsharing did not impact breastfeeding duration.

Messaging Affects the Behavior of African American Parents with Regards to Soft Bedding in the Infant Sleep Environment: A Randomized Controlled Trial.

OBJECTIVE: To evaluate the impact of specific health messages on the decisions of African American parents regarding soft bedding use, specifically related to the high degree of self-efficacy that African American parents have with regards to preventing infant suffocation vs low self-efficacy with regards to sudden infant death syndrome (SIDS) risk reduction. STUDY DESIGN: We conducted a randomized, controlled clinical trial of African American mothers of infants. The control group received standard messaging emphasizing safe sleep practices recommended by the American Academy of Pediatrics for the purposes of SIDS risk reduction. The intervention group received enhanced messaging emphasizing safe sleep practices for both SIDS risk reduction and suffocation prevention. Participants completed interviews at 2-3 weeks, 2-3 months, and 5-6 months after the infant's birth. RESULTS: Of 1194 mothers enrolled, 637 completed all interviews. The use of soft bedding both in the past week and last night declined with age (P < .001). Infants in the enhanced group had a lower rate of use of soft bedding in the past week (P = .006) and last night (P = .013). Mothers who received the enhanced message were more likely to state that they avoided soft bedding to protect their infant from suffocation. CONCLUSIONS: African American mothers who receive an enhanced message about SIDS risk reduction and suffocation prevention are less likely to use soft bedding in their infant's sleep environment. TRIAL REGISTRATION: ClinicalTrials.gov: NCT01361880.

Differences in African-American Maternal Self-Efficacy Regarding Practices Impacting Risk for Sudden Infant Death.

Sudden Infant Death Syndrome (SIDS) and other sleep-related deaths, including accidental suffocation, account for ~4000 US deaths annually. Parents may have higher self-efficacy with regards to preventing accidental suffocation than SIDS. The objective of this study was to assess self-efficacy in African-American mothers with regards to safe sleep practices and risk for SIDS and accidental suffocation. As part of randomized clinical trial in African-American mothers of newborn infants, mothers completed a baseline survey about knowledge of and attitudes towards safe sleep recommendations, current intent, self-efficacy, and demographics. Tabular and adjusted, regression-based analyses of these cross-sectional data evaluated the impact of the message target (SIDS risk reduction vs. suffocation prevention) on perceived self-efficacy. 1194 mothers were interviewed. Mean infant age was 1.5 days. 90.8 % of mothers planned to place their infant supine, 96.7 % stated that their infant would sleep in the same room, 3.6 % planned to bedshare with the infant, and 72.9 % intended to have soft bedding in the crib. Mothers were more likely to believe that prone placement (70.9 vs. 50.5 %, p < 0.001), bedsharing (73.5 vs. 50.1 %, p < 0.001), and having soft bedding in the sleep area (78.3 vs. 59.5 %, p < 0.001) increased their infant's risk for suffocation than it did for SIDS. Mothers had higher self-efficacy, viz. increased confidence that their actions could keep their infant safe, with regards to suffocation than SIDS (88.0 vs. 79.4 %, p < 0.001). These differences remained significant when controlled for sociodemographics, grandmother in home, number of people in home, and breastfeeding intention. Maternal self-efficacy is higher with regards to prevention of accidental suffocation in African-Americans, regardless of sociodemographics. Healthcare professionals should discuss both SIDS risk reduction and prevention of accidental suffocation when advising African-American parents about safe sleep practices.

Detection of cervical lesions by multivariate analysis of diffuse reflectance spectra: a clinical study.

Diffuse reflectance (DR) spectroscopy is a non-invasive, real-time, and cost-effective tool for early detection of malignant changes in squamous epithelial tissues. The present study aims to evaluate the diagnostic power of diffuse reflectance spectroscopy for non-invasive discrimination of cervical lesions in vivo. A clinical trial was carried out on 48 sites in 34 patients by recording DR spectra using a point-monitoring device with white light illumination. The acquired data were analyzed and classified using multivariate statistical analysis based on principal component analysis (PCA) and linear discriminant analysis (LDA). Diagnostic accuracies were validated using random number generators. The receiver operating characteristic (ROC) curves were plotted for evaluating the discriminating power of the proposed statistical technique. An algorithm was developed and used to classify non-diseased (normal) from diseased sites (abnormal) with a sensitivity of 72 % and specificity of 87 %. While low-grade squamous intraepithelial lesion (LSIL) could be discriminated from normal with a sensitivity of 56 % and specificity of 80 %, and high-grade squamous intraepithelial lesion (HSIL) from normal with a sensitivity of 89 % and specificity of 97 %, LSIL could be discriminated from HSIL with 100 % sensitivity and specificity. The areas under the ROC curves were 0.993 (95 % confidence interval (CI) 0.0 to 1) and 1 (95 % CI 1) for the discrimination of HSIL from normal and HSIL from LSIL, respectively. The results of the study show that DR spectroscopy could be used along with multivariate analytical techniques as a non-invasive technique to monitor cervical disease status in real time.

Periscapular mass in a refugee patient: a case of musculoskeletal extrapulmonary tuberculosis.

This report discusses the case of a male refugee from East Africa who presented with persistent right shoulder pain and was found to have a periscapular mass, whose diagnostic and therapeutic delay was due not only to fragmentation of care, but also a lack of awareness of musculoskeletal manifestations of extrapulmonary tuberculosis. This case underscores the importance of including tuberculosis in the differential diagnosis for a variety of symptoms in patients with risk factors, even if they report previous negative screening.

Measuring Cognitive Workload Using Multimodal Sensors.

This study aims to identify a set of indicators to estimate cognitive workload using a multimodal sensing approach and machine learning. A set of three cognitive tests were conducted to induce cognitive workload in twelve participants at two levels of task difficulty (Easy and Hard). Four sensors were used to measure the participants' physiological change, including, Electrocardiogram (ECG), electrodermal activity (EDA), respiration (RESP), and blood oxygen saturation (SpO2). To understand the perceived cognitive workload, NASA-TLX was used after each test and analysed using Chi-Square test. Three well-know classifiers (LDA, SVM, and DT) were trained and tested independently using the physiological data. The statistical analysis showed that participants' perceived cognitive workload was significantly different ( ) between the tests, which demonstrated the validity of the experimental conditions to induce different cognitive levels. Classification results showed that a fusion of ECG and EDA presented good discriminating power (acc = 0.74) for cognitive workload detection. This study provides preliminary results in the identification of a possible set of indicators of cognitive workload. Future work needs to be carried out to validate the indicators using more realistic scenarios and with a larger population.

Infant Safe Sleep Practices as Portrayed on Instagram: Observational Study.

BACKGROUND: Parenting practices are highly influenced by perceived social norms. Social norms and American Academy of Pediatrics (AAP) guidelines for infant safe sleep practices are often inconsistent. Instagram has become one of the most popular social media websites among young adults (including many expectant and new parents). We hypothesized that the majority of Instagram images of infant sleep and sleep environments are inconsistent with AAP guidelines, and that the number of "likes" for each image would not correlate with adherence of the image to these guidelines. OBJECTIVE: The objective of this study was to determine the extent of adherence of Instagram images of infant sleep and sleep environments to safe infant sleep guidelines. METHODS: We searched Instagram using hashtags that were relevant to infant sleeping practices and environments. We then used an open-source web scraper to collect images and the number of "likes" for each image from 27 hashtags. Images were analyzed for adherence to AAP safe sleep guidelines. RESULTS: A total of 1563 images (1134 of sleeping infant; 429 of infant sleep environment without sleeping infant) met inclusion criteria and were analyzed. Only 117 (7.49%) of the 1563 images were consistent with AAP guidelines. The most common reasons for inconsistency with AAP guidelines were presence of bedding (1173/1563, 75.05%) and nonrecommended sleep position (479/1134, 42.24%). The number of "likes" was not correlated with adherence of the image to AAP guidelines. CONCLUSIONS: Although individuals who use Instagram and post pictures of sleeping infants or infant sleep environments may not actually use these practices regularly, the consistent portrayal of images inconsistent with AAP guidelines reinforces that these practices are normative and may influence the practice of young parents.

Impact of Personal Social Network Types on Breastfeeding Practices in United States-Born Black and White Women.

Background: An individual's personal social network influences behavior; one is more likely to adopt behaviors consistent with norms within the network to avoid social stigma. Personal social network types, which are associated with individual behaviors, have been identified for new mothers: exclusive (kin centric) and expansive (not kin centric). Objective: To analyze the impact of personal social network type on breastfeeding practices in U.S.-born Black and White mothers. Methods: Mothers of infants <6 months old completed surveys about their personal social networks and feeding practices. Multinomial logit models examined how social network types moderated effects of sociodemographic factors on feeding practices. Results: Of 402 mothers, 67% self-identified as Black and 33% as White. Forty-six percent were exclusively breastfeeding; 26% were mixed breast and formula feeding. The likelihood of exclusively breastfeeding was positively associated with percentage of network members who had breastfed; this association was stronger for mothers with exclusive networks than those with expansive networks (ß = 2.74, p < 0.001 versus ß = 1.78, p = 0.03). Black race was positively correlated with exclusive breastfeeding or mixed feeding for mothers with exclusive networks (ß = 1.50, p = 0.046; ß = 1.86, p = 0.02, respectively). Lower educational level was negatively correlated with exclusive breastfeeding; this correlation was stronger for mothers with exclusive networks (ß = -1.91, p = 0.002 versus ß = -1.70, p = 0.04). Lower educational level was also negatively correlated with mixed feeding for mothers with exclusive networks (ß = -1.61, p = 0.02). Conclusions: Mothers' personal social network type likely moderates the relationship between sociodemographic variables and feeding practices. While the influence of having network members with breastfeeding experience is important, the magnitude of influence is stronger in exclusive networks.

Can respondent driven sampling be used to recruit new mothers? A mixed methods study in metropolitan Washington DC.

BACKGROUND: Respondent driven sampling (RDS) is employed to recruit populations that are hard-to-reach, "hidden," or without a sampling frame. For new mothers (those with infants <6 months) in countries without national health care systems or registries, there is no sampling frame, and random samples may only be attained through costly strategies, e.g., random-dial calling. OBJECTIVE: To assess the feasibility of RDS to recruit new mothers. METHODS: In the initial study, we recruited 30 new mothers ("seeds") from a single birth hospital; each was given 3 referral coupons to give to other mothers ("referrals"). When our sample did not self-perpetuate with referrals, additional seeds were recruited. Demographics of seeds and referrals were compared. A subset of mothers participated in focus groups and were asked about their experience with RDS. We also conducted a second survey of new mothers to further assess feasibility of RDS in this population. RESULTS: Of the 402 mothers recruited in the initial study, 305 were seeds and only 97 were referrals. Referrals were more likely to be White, highly educated, older, and privately insured (all p≤0.001). Focus group participants indicated that the time required to meet other mothers was an important barrier. In the second survey we recruited 201 mothers; only 53.7% knew ≥1 mother whom they could invite to the study. CONCLUSIONS: New mothers are not easily recruited using RDS because they have a limited number of contacts who are also new mothers. Those recruited through RDS are more likely to be older, Caucasian and of high socioeconomic status, indicating it is not an effective way to recruit a representative sample of new mothers.

A Qualitative Analysis of How Mothers' Social Networks Are Established and Used to Make Infant Care Decisions.

Background. Mothers often look to family members and friends (ie, their social network) for advice and support regarding infant care decisions. However, little is known about the process by which mothers' social networks are established and how mothers use these networks to make decisions regarding infant care. We thus conducted a qualitative analysis to explore how mothers choose individuals for their social networks, and how they use these for decision-making. Methods. Focus groups or individual interviews were conducted with 28 mothers. We asked probing questions about whom mothers turned to for advice and support, and how they made infant care decisions. Data were coded and analyzed iteratively for emerging themes. Results. Themes that emerged were changes in social networks once children are born, reasons for being in the mother's social network, importance of the pediatrician as a trusted source, and process of making infant care decisions. After an infant is born, mothers gravitate toward friends with children; trustworthiness of those whom mothers turn to is based on their perceived experience and knowledge. Pediatricians are valued for their professional and personal experience with children. Mothers use consensus and/or instinct to make infant care decisions, but continually seek reassurance that these decisions are correct. Conclusion. Mothers' social networks are important sources of infant care information. Because mothers rely on consensus and continued reassurance when making decisions, health care professionals have many opportunities to influence decision-making. Consistent health care messaging can enhance mothers' perceptions that there is consensus of opinion from trusted sources.

The Influence of Social Networks and Norms on Breastfeeding in African American and Caucasian Mothers: A Qualitative Study.

Background: Social networks and subjective norms (individuals' perceptions of what other people think) can be influential in decision-making. Although there are data about the importance of support in initiation and duration of breastfeeding, no studies have explored the influence of women's social networks and the norms within those networks on breastfeeding. Research Aim: To investigate, through qualitative methods, the influence of mothers' social networks and subjective norms, both within and outside of her network, with regard to breastfeeding practices. Materials and Methods: Twenty-eight mothers participated in focus groups or individual interviews. Probing questions concerning breastfeeding intent, initiation, continuation, and support with regard to social networks and subjective norms were asked. Themes were developed in an iterative manner from coded data. Matrix coding queries assessed patterns in the data and compared quotes based on the respondents' race and social network type. Results: General themes that emerged were the importance of breastfeeding experience within one's social network, the influence of the infant's father, handling disagreement within one's network, and the effects of social norms that exist outside of one's network. Mothers described support for breastfeeding from network members as especially important when breastfeeding was not the norm within the network. There were no differences in themes by race or social network type. Conclusion: Breastfeeding behavior is influenced by a mother's social network, regardless of her race or social network type. Even when breastfeeding is not normative within one's social network, by relying on one network member to support them, mothers may be able to resist the opposing norms of their social network. Since breastfeeding is known to be beneficial to infants and mothers, education or interventions to improve breastfeeding rates may be more effective if they include individual network members who can provide strong support to new mothers.

Radiation induced osteogenic sarcoma of the maxilla.

BACKGROUND: Radiation induced sarcoma arise as a long term complication of radiation treatment for other benign or malignant conditions. They are of very rare occurrence in jaw bones and are even rarer in maxilla. CASE PRESENTATION: Here we report a case of radiation induced sarcoma in a patient treated for squamous cell carcinoma of buccal mucosa with radiation who developed osteosarcoma of maxillary bone after six years. The patient was treated successfully with surgery. CONCLUSION: What should be the best treatment of radiation induced sarcoma is still debatable; however, surgery offers the best chance of cure. Role of reradiation and adjuvant chemotherapy needs to be further evaluated.

Comparison of Infant Sleep Practices in African-American and US Hispanic Families: Implications for Sleep-Related Infant Death.

African-American and Hispanic families share similar socioeconomic profiles. Hispanic rates of sleep-related infant death are four times lower than African-American rates. We conducted a cross-sectional, multi-modal (surveys, qualitative interviews) study to compare infant care practices that impact risk for sleep-related infant death in African-American and Hispanic families. We surveyed 422 African-American and 90 Hispanic mothers. Eighty-three African-American and six Hispanic mothers participated in qualitative interviews. African-American infants were more likely to be placed prone (p < 0.001), share the bed with the parent (p < 0.001), and to be exposed to smoke (p < 0.001). Hispanic women were more likely to breastfeed (p < .001), while African-American women were more knowledgeable about SIDS. Qualitative interviews indicate that, although African-American and Hispanic parents had similar concerns, behaviors differed. Although the rationale for infant care decisions was similar for African-American and Hispanic families, practices differed. This may help to explain the racial/ethnic disparity seen in sleep-related infant deaths.