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Clinical practice guidelines for individuals with Turner syndrome (TS) recommend screening for neuropsychological concerns (NC) and mental health concerns (MHC). However, current provider screening and referral patterns for NC and MHC are not well characterized. Additionally, prevalence of and risk factors for NC and MHC vary across studies. This multicenter chart review study examined the prevalence, risk factors for, and management of NC and MHC in a cohort of 631 patients with TS from three pediatric academic medical centers. NC and/or MHC were documented for 48.2% of patients. Neuropsychological evaluation recommendations were documented for 33.9% of patients; 65.4% of the sample subsequently completed these evaluations. Mental health care recommendations were documented in 35.0% of records; subsequent documentation indicated that 69.7% of these patients received such services. Most notably, rates of documented MHC, NC, and related referrals differed significantly by site, suggesting the need for standardized screening and referral practices. TS diagnosis in early childhood was associated with an increased risk of NC. Spontaneous menarche was associated with increased risk of MHC. Younger age at growth hormone initiation was associated with both increased risk of isolated NC and co-occurring NC and MHC. Mosaic karyotype was associated with decreased risk of NC and MHC.

Objectification theory and the tripartite influence model provide useful frameworks for understanding the body image experiences of men and women. However, there is little systematic investigation of how sexual orientation moderates the links between these constructs and body image satisfaction. It has been hypothesized, for example, that the associations of surveillance (i.e., monitoring of one's appearance due to objectification by others) would be strongest for groups targeted by the male gaze (e.g., gay men, lesbian women, and bisexual men and women). Here we proposed an integrated sociocultural model and examined these pathways in multigroup structural equation models in a national sample of heterosexual, bisexual, and lesbian women (ns = 5395; 598; 213, respectively), and heterosexual, bisexual, and gay men (4869; 194; and 194, respectively) aged 18-65 years. Sexual orientation moderated some of these pathways. The most consistent pattern was that appearance pressures were internalized to a greater extent among bisexual participants. The pathways to poorer body image were generally similar among heterosexual and gay/lesbian men and women. These findings highlight the importance of examining sexual orientation-specific influences on body image across diverse groups, as well as the commonalities in the experiences of men and women across sexual orientations.

OBJECTIVE: Postpartum urogynecologic and other physical symptoms are common and burdensome. Whether they interfere with breastfeeding has not been thoroughly examined, and this study aims to fill this gap. METHODS: Mothers with an infant (2 to 6 months) were recruited from the U.S. ResearchMatch volunteer registry and completed the Life After Pregnancy Study, which assessed postpartum physical symptoms and breastfeeding self-efficacy, experiences, and problems. Modified Poisson regression and linear regression with fully conditional specification multiple imputation to handle missing data were used to examine the associations between physical symptoms and breastfeeding-related outcomes. RESULTS: Among 222 participants, postpartum physical symptoms were common [e.g., painful sex (42%), urinary incontinence (32%)]. Breastfeeding problems were experienced by most participants [e.g., engorged breasts (72%), sore or cracked nipples (70%), breastfeeding or pumping was painful (67%)]. Although postpartum physical symptoms were not associated with breastfeeding for less than 2 months versus greater than/equal to 2 months (β = 0.94, 95% confidence interval [CI]: 0.78, 1.13), women with excess weight retention and those reporting painful sex or hemorrhoids were more likely to report breastfeeding problems such as sore or cracked nipples or perceived low milk supply. Overall, more physical symptoms were associated with more breastfeeding problems (adj β = 0.39, 95% CI: 0.17, 0.62) and lower breastfeeding self-efficacy (adj β = −2.24, 95% CI: −4.36, −0.13). CONCLUSIONS: Postpartum physical symptoms were associated with breastfeeding problems and overall poorer breastfeeding self-efficacy, but not with short-term breastfeeding duration. Future studies should explore how addressing physical symptoms among postpartum mothers might improve breastfeeding outcomes.

PURPOSE: The purpose of this study was to examine associations between postpartum obsessive-compulsive (OC) symptoms, infant care and feeding worries, and breastfeeding experiences in a sample of postpartum women. MATERIALS AND METHODS: Women were recruited via an online U.S. research volunteer database and were eligible if they were aged 18–47 years, their primary language was English, they had an infant 2–6 months old, and tried breastfeeding the infant at least once. Participants completed a survey to assess breastfeeding experiences and practices, OC symptoms and other mental health conditions, and demographics. Modified Poisson regression and linear regression were used to estimate associations between clinically elevated OC symptoms, reported thoughts or worries about infant feeding and care, and breastfeeding experiences, problems, and duration. RESULTS: Of 232 participants, 32 (14%) had clinically elevated OC symptoms. These women had more perinatal OC symptoms (scoring 3.6 points higher on perinatal OC symptoms score [95% confidence interval {CI}: 0.4 to 6.9]), including symptoms specific to infant care and feeding [e.g., adjusted relative risk((repeated washing of baby's bottles, bowl, or plate)) = 2.37, 95% CI:1.55 to 3.64], and more breastfeeding problems (adjusted β = 0.3, 95% CI: 0.0 to 0.2) than women with fewer OC symptoms. However, they did not report an overall worse breastfeeding experience (adjusted β = 0.4, 95% CI: −9.3 to 10.1). Adjusted models controlled for depressive symptoms. CONCLUSIONS: Obsessive thoughts and compulsions were common in this sample and extended to infant feeding activities. These symptoms were associated with more breastfeeding problems. Interactions in mother–infant dyads are critical because of lasting impacts on parent–child relationships and child development. Treating OC symptoms may foster healthier mother–infant relationships.

Introduction: Turner syndrome (TS) is associated with a high risk of primary ovarian insufficiency. Current guidelines recommend early fertility counseling for affected youth and their families. This study assessed clinical providers’ (MD, NP, or PA) fertility counseling practices for girls with TS. Methods: TS providers were invited to complete a survey via the Pediatric Endocrine Society listserv. Descriptive statistics summarized variables of interest. Correlations were used to identify associations between barriers/practice characteristics and fertility preservation (FP) referral. Thematic analysis was used to examine qualitative responses. Results: 119 providers completed the survey. Seventy percent reported discussing fertility implications of TS routinely in pediatric care. Fifty-six percent reported often or always referring patients with spontaneous menarche to FP specialists, whereas only 19% reported often or always referring their patients without spontaneous menarche (p < 0.001). Barriers associated with FP referral frequency included unfamiliarity with FP options, belief that FP is not a possible goal for their patients, and absence of a local reproductive endocrinologist. Qualitatively, four referral barrier themes were identified: (1) questionable utility of referral, (2) lack of perceived interest among patients/families, (3) provider barriers (e.g., lack of knowledge), (4) logistical/structural barriers to accessing fertility-related care. Discussion/Conclusion: Pediatric endocrinology providers report inconsistently discussing fertility implications of TS. The frequency of referral to an FP specialist and factors/barriers affecting the decision to refer remain variable. Future research should focus on expanding provider education, addressing barriers to high-quality fertility counseling and referral for patients with TS, and investigating FP outcomes in TS.

PURPOSE: Develop a measure to quantitatively assess perceived pressure to breastfeed and examine associations between perceived pressure, emotional distress, and the breastfeeding experience and self-efficacy among women with 2 to 6-month-old infants. STUDY DESIGN AND METHODS: A cross-sectional study using an online survey to assess perceived pressure to breastfeed, emotional distress, and the breastfeeding experience and self-efficacy was conducted. Participants were recruited through ResearchMatch, a national online service that matches potential participants to research studies, and online community forums (e.g., Facebook). RESULTS: Women (n=187) reported themselves and society as the greatest sources of pressure. Pressure to breastfeed was negatively associated with the breastfeeding experience (r=−.34, p

OBJECTIVE: Fertility-related health care and decision-making needs for youth with differences of sex development (DSD) are complex and vary by condition and the values and preferences of each individual and their partner and/or family. Discussing fertility implications can be a challenging aspect of clinician and family communication about a DSD diagnosis. This qualitative study assesses fertility-related communication experiences of adolescents and young adults (AYA) with DSD. METHOD: Participants included 97 AYA with DSD ages 12–26 years (M = 18.5, SD = 3.9) who completed questionnaires on demographic and medical information and patient–clinician communication. A subsample of 33 AYA also completed semistructured interviews about experiences with fertility discussions. RESULTS: Two major themes, each with subthemes, were identified: (1) understanding of fertility related to (1a) one’s own fertility status, (1b) reproductive and parenting options, and (1c) emotional reactions to one’s own fertility status and (2) conversations about fertility related to (2a) reflections on conversations, (2b) barriers, and (2c) advice. CONCLUSIONS: AYA perspectives in this study provide important information about how youth with DSD learn about their fertility status, the impact their fertility status has on them, and the fertility-related conversations they have with their providers and families. Specific recommendations for providers and parents or caregivers include the following: inform youth of their fertility status as early as possible; be direct but patient in delivering information; begin by giving basic information and provide more detail as the conversation unfolds; revisit the conversation over time to allow for further discussion or information-seeking; offer additional information or resources, including behavioral health resources.

Post-baccalaureate programs are increasingly common and have demonstrated success in preparing students for graduate programs. Most post-baccalaureate programs have a pre-medical focus, and the few existing clinical psychology-focused programs are centered on coursework, situated within a university, costly to students, and/or geared towards career change. The post-baccalaureate program at Nationwide Children's Hospital was created in 2017 and is uniquely positioned within a pediatric academic medical center. The program provides research skill training, mentorship, professional development, and graduate school preparation to employed clinical research coordinators. An early program assessment, based on self-reports, revealed the program attracts diverse participants that are primarily interested in pediatric or child psychology and rate themselves as "somewhat confident" in their current research skills. This manuscript summarizes the three phases of development and key components of the post-baccalaureate program, which can serve as a model to other medical centers interested in developing training programs for research staff, particularly underrepresented racial and ethnic minorities, and those from disadvantaged backgrounds.

This paper describes 20 years of microtia and craniofacial microsomia (CFM) psychosocial and healthcare studies and suggests directions for clinical care and research. A narrative review of papers January 2000 to July 2021 related to psychosocial and healthcare experiences of individuals with microtia and CFM and their families. Studies (N = 64) were mainly cross-sectional (69%), included a range of standardized measures (64%), and were with European (31%), American (27%), or multinational (23%) samples. Data were generally collected from both patients and caregivers (38%) or patient self-report (35%). Sample sizes were 11 to 25 (21%), 26 to 50 (19%), 51 to 100 (22%), or over 100 (38%). Studies addressed 5 primary topics: (1) Healthcare Experiences, including Medical Care, Hearing Loss/Amplification, Diagnostic Experiences, and Information Preferences; (2) Psychosocial Experiences, including Teasing, Behavioral Adjustment, Psychosocial Support, and Public Perception; (3) Neurocognitive Functioning and Academic Assistance; (4) Pre- and Post-Operative Psychosocial Outcomes of Ear Reconstruction/Canaloplasty; and (5) Quality of Life and Patient Satisfaction. Care involved multiple specialties and was often experienced as stressful starting at diagnosis. Psychosocial and neurocognitive functioning were generally in the average range, with possible risk for social and language concerns. Coping and resiliency were described into adulthood. Satisfaction and positive benefit of ear reconstruction/canaloplasty were high. Care recommendations include increasing: hearing amplification use, microtia and CFM knowledge among providers, efficient treatment coordination, psychosocial support, academic assistance, and advances to minimize surgical scarring. This broad literature overview informs clinical practice and research to improve psychosocial outcomes.

We examined how gender, body mass, race, age, and sexual orientation were linked to appearance evaluation, overweight preoccupation, and body image-related quality of life among 11,620 adults recruited via Mechanical Turk. Men were less likely than women to report low appearance evaluation, high overweight preoccupation, negative effects of body image on their quality of life, being on a weight-loss diet, and trying to lose weight with crash diets/fasting. Racial differences were generally small, but greater appearance evaluation was reported by Black men versus other groups and Black women versus White women. Across all measures, gay and bisexual men reported poorer body image than heterosexual men, with only small effect sizes observed for sexual orientation differences among women. Body mass, but not age, was strongly associated with body image. The prevalence of poor body image highlights the need for interventions. On the positive side, half of men and women reported high appearance evaluation. Examination of this group could identify factors promoting positive body image.

Background: Women during the postpartum period undergo significant changes which affect body image, eating behaviors, and, potentially, breastfeeding. There is limited research about relationships among these variables, particularly related to breastfeeding experiences and self-efficacy. Research Aims: To determine: (1) the associations between eating disorder symptoms and body image, breastfeeding self-efficacy, and breastfeeding experiences; and (2) the differences in body image, breastfeeding self-efficacy, breastfeeding experiences, and breastfeeding status of postpartum women with and without clinically significant eating disorder symptoms. Methods: A secondary data analysis using a 2-group correlational, cross-sectional online survey design was used. Participants with infants 2–6 months old who had breastfed their infant at least once ( N = 204) were recruited nationally to complete a cross-sectional survey assessing breastfeeding and postpartum physical and mental health using validated measures. Linear and logistic regression evaluated differences between participants with and without eating disorder symptoms regarding their body image, breastfeeding experience and self-efficacy, and breastfeeding status (continued vs. discontinued) at 2 months postpartum. Results: Clinical eating disorder symptoms were reported by 9.8% ( n = 20). Participants with clinical eating disorder symptoms reported lower appearance evaluations ( B = -0.53, 95% CI [-0.93, -0.14]) and body image satisfaction ( B = -0.55, 95% CI [-0.87, -0.23]); reduced odds of breastfeeding at 2 months postpartum (AOR = 0.15, 95% CI [0.04, 0.56]); and lower breastfeeding self-efficacy ( B = -7.70, 95% CI [-14.82, -0.58] relative to participants without clinical symptoms. No differences between groups were observed for breastfeeding experiences. Conclusions: Participants with clinically significant eating disorder symptoms are at risk for early breastfeeding discontinuation and lower breastfeeding self-efficacy. Our findings have implications for future research and clinical care practices, including screening for body image concerns and eating disorder symptoms and supporting breastfeeding self-efficacy.

Objective: To examine relationships between early feeding and growth and maternal distress in infants with and without cleft lip and/or palate (CL/P). Design: Cross-sectional. Setting: Pediatric academic medical center in the Midwestern United States. Participants: Mothers of infants 1 to 12 weeks old with CL/P (n = 30) and without CL/P (control group, n = 30) were recruited at craniofacial clinic or pediatrician appointments. Main Outcome Measure(s): Maternal responses on the Feeding/Swallowing Impact Survey (FS-IS), Parenting Stress Index, Fourth Edition, Short Form (PSI-4-SF), and Edinburgh Postnatal Depression Scale. Infant feeding history and growth measurements were obtained. Results: Having an infant with CL/P revealed greater impact on maternal health-related quality of life due to feeding problems ( F = 4.83, P = .03). Mothers of infants with CL/P reported average range Total Stress scores on the PSI-4-SF, which were higher than controls ( F = 4.12, P = .05). Edinburgh Postnatal Depression Scale scores did not differ between groups. Compared to controls, infants with cleft palate had lower percentiles for weight ( t = 4.13, P = .04) and length ( t = 2.93, P = .01). Higher FS-IS scores were associated with longer feeding duration ( r = 0.32, P = .01) and lower weight ( r = −0.31, P = .02) and length ( r = −0.32, P = .02). Conclusions: Despite receiving early team care and feeding interventions, mothers of infants with CL/P reported higher stress and more challenges with feeding and growth. Future studies should examine targeted psychosocial interventions to improve feeding and growth outcomes in infants with CL/P.

Youth with craniofacial conditions often have appearance and speech differences and are vulnerable to social stigmatization and body image disturbances. Given sociocultural pressures for female attractiveness, adolescent girls with craniofacial conditions may be especially vulnerable to body dissatisfaction and appearance-related social stigmatization, though such sex differences have been infrequently studied in this population. This study aimed to: (1) examine sex differences in body image disturbance, satisfaction with speech and facial appearance, and perceived stigmatization among adolescents with craniofacial conditions; and (2) evaluate whether stigmatization perceptions are predictive of body image disturbance and satisfaction with facial appearance and speech. Using a cross-sectional design, 110 adolescents from two craniofacial centers completed measures of body image disturbance, satisfaction with speech and facial appearance, and perceived stigmatization. Females reported significantly greater levels of body image disturbance and lower satisfaction with facial appearance compared to males. There were no significant sex differences for satisfaction with speech or perceived stigmatization. Perceived stigmatization was a significant predictor of body image disturbance, and satisfaction with facial appearance and speech while controlling for sex, body mass index, and age. Interventions to prevent and/or address body image and stigmatization concerns are clinically indicated for both sexes.

Purpose: this study investigated the risk for children with non-syndromic craniosynostosis to develop behavioral problems during school age determined by the type of craniosynostisis, age at first surgery, and number of surgeries. Method: final sample consisted of 43 children aged between 6 years and 8 months and 17 years and 1 month (M = 10 years and 5 months). Behavioral problems were assessed with Child Behavioral Checklist (CBCL). Results: our sample had higher scores on the CBCL than the general population; specific elevations were observed including somatic complaints, aggressive behavior, social problems, attention problems, and thought problems and rule-breaking behavior. Behavioral functioning varied by number of surgical procedures, type of craniosynostosis, and age at first surgery. Conclusion: for school-aged NSC children's behavioral functioning, diagnosis specific patterns especially impacted by the first age of the surgery and number of surgeries., NA

To improve psychosocial risk assessment and service provision for children with craniofacial conditions presenting for annual interdisciplinary team visits. Institute for Healthcare quality improvement model. U.S. pediatric academic medical center. Caregivers of children ages 0-17 years with craniofacial conditions presenting for 1692 team visits between August 2017 and July 2019. Key drivers included: (1) standardizing pre-visit triage processes; (2) administering the Psychosocial Assessment Tool-Craniofacial Version (PAT-CV); (3) utilizing PAT-CV scores in real time to add patients to psychosocial provider schedules; and (4) family education. Interventions included improving patient screening, increasing PAT-CV completion rate, altering clinic flow, providing patient and parent education about psychosocial services, and altering team member roles to fully integrate PAT-CV administration and scoring in the clinic. The primary outcome was the percentage of patients identified for psychosocial consultations via nurse triage, PAT-CV score, family or provider request who completed consultations. The secondary outcome was the percentage of patients completing needed psychosocial consultations based on elevated PAT-CV scores. Use of the PAT-CV resulted in an increase in the percentage of patients with elevated psychosocial risk who received a psychosocial consultation from 86.7% to 93.4%. The percentage of children receiving psychosocial consultation at their annual team visit due to elevated PAT-CV scores increased from 72% to 90%. Integrating a validated psychosocial risk screening instrument can improve risk identification and psychosocial consultation completion. A combination of risk screening approaches may be indicated to identify patients in need of psychosocial services.

Objective: Psychosocial issues associated with craniofacial diagnoses and the ongoing burden of care can impact the quality of life of patients and families, as well as treatment adherence and outcomes. Utilizing available literature and clinical expertise across 6 centers, the present article summarizes key psychosocial issues for the benefit of nonmental health medical providers and offers suggestions as to how all members of craniofacial teams can promote positive psychosocial outcomes. Results: Family adjustment across developmental phases is outlined, with strategies to support adaptive parental coping. Teasing is a common concern in craniofacial populations and medical providers can promote coping and social skills, as well as link families to mental health services when needed. Academic issues are described, alongside suggestions for medical providers to assist families with school advocacy and ensure access to appropriate services within the school setting. Medical providers are key in preparing patients and families for surgery, including consideration of medical, social, and logistical supports and barriers. As craniofacial care spans infancy to adulthood, medical providers are instrumental in assisting patients and families to navigate treatment transition periods. In addition to ongoing clinical team assessments, medical providers may utilize screening measures to identify and track patient and family adjustment in multiple areas of team care. Conclusions: Multidisciplinary providers play an important role in supporting positive adjustment in patients affected by craniofacial conditions and their families.

Purpose This article reviews the psychosocial risks associated with 22q11.2 deletion syndrome, a relatively common genetic condition associated with a range of physical and psychiatric problems. Risks associated with developmental stages from infancy through adolescence and early adulthood are described, including developmental, learning, and intellectual disabilities as well as psychiatric disorders including anxiety, mood, and psychotic disorders. Other risks related to coping with health problems and related treatments are also detailed for both affected individuals and their families. Conclusion The article ends with strategies for addressing psychosocial risks including provision of condition-specific education, enhancement of social support, routine assessment of cognitive abilities, regular mental health screening, and referrals for empirically supported psychiatric and psychological treatments.

Objective: (1) To explore orthodontists’ perceptions of nonadherence and related factors in their patients with craniofacial conditions; (2) to examine differences in adherence perceptions by provider characteristics; (3) to evaluate current adherence interventions. Design: Cross-sectional. Setting: United States-based orthodontists affiliated with a nonprofit association for providers treating oral cleft and craniofacial conditions received survey invitations via list-serv, e-mail, and social media. Participants: Thirty-eight orthodontists participated (mean age = 50.5 ± 10.7 years; 76% Caucasian; 55% male; 54% private practice). Main Outcome Measure: An 80-item survey assessed demographic characteristics; frequencies of various adherence problems and adherence-related prolonged or terminated treatment; importance of adherence to treatment outcomes; factors that may impact adherence; interest in improving adherence; and use of adherence-enhancing interventions. Results: Adherence problems were common, yet 80.6% of participants rated adherence as “very important” to cleft treatment outcomes. Child behavior and motivation, caregiver reinforcement of behavior, and provider communication with the family were identified as factors that greatly impact adherence. Orthodontists in university-affiliated programs were more likely to rate individual, family, health-care system, and community factors as impacting adherence compared to private practice orthodontists; 80.6% used adherence interventions; these strategies were all rated as “sometimes successful.” Conclusions: Nonadherence to cleft lip/palate-related orthodontic care is common and potentially detrimental to care. Current interventions are not uniformly successful and could be better tailored. Understanding provider, patient, and family factors that affect adherence can inform individualized treatment planning to improve adherence and ultimately, treatment outcomes.

This study evaluated the effectiveness of academic screening measures in relation to parent-reported diagnoses. Multicenter, retrospective cohort study including structured interviews, questionnaires, and chart reviews. Six North American cleft centers. Children (n = 391) with cleft lip and/or palate, ages 8 to 10 years of age (192 male) and their guardians were recruited during regular clinic visits. Parent and child ratings on the Pediatric Quality of Life Inventory (PedsQL) School Scale, child report on CleftQ School Scale, parent report on the Adaptive Behavior Assessment System-Third Edition Functional Academics (ABAS-FA) Scale and Child Behavior Checklist (CBCL) School Competency Scale, parent interview, and medical chart review. Risk for concerns ranged from 12% to 41%, with higher risk reflected on the CBCL-SC compared to other measures. Males with cleft palate were consistently at the highest risk. Only 9% of the sample had a parent-reported diagnosis of a learning or language disability. Ratings from the ABAS-FA and CBCL-SC had the highest utility in identifying those with language and/or learning concerns. As cleft teams work to develop standardized batteries for screening and monitoring of patients, it is important to evaluate the effectiveness of measures in identifying those at highest risk. When screening for language and learning disorders, questions related to potential academic struggles, such as increased school effort or increased school distress, are most useful. Referrals for follow-up evaluation are recommended for those identified at high risk.

This observational, multisite cohort study explored health-related quality of life (HRQoL) in children with cleft lip and/or palate (CL/P), including interrater agreement and ratings for this group relative to clinical cutoff scores and published means for healthy and chronically ill children. Participants (338 children ages 8-10 years, 45.9% male and their parents, 82.0% female) across 6 sites completed the Pediatric Quality of Life Inventory Generic Core Scales (PedsQL). Intraclass correlation revealed poor interrater agreement for most HRQoL domains. Although ratings were generally higher than those expected for children with a chronic illness, child ratings were below healthy means for school functioning, and parent proxy ratings were below healthy means for all domains except physical functioning. Lower ratings consistent with chronic illness means were found for self-reported emotional and psychosocial functioning in children with cleft lip and palate (CLP), as well as parent proxy-reported emotional, school, and psychosocial functioning for children with cleft palate (CP). Scores were most likely to be in the clinical range for children with CP for social, school, and total functioning. Although parent proxy report provides important information about observed functioning, poor interrater agreement indicates that both child and parent proxy reported HRQoL should be included in outcomes assessment for CL/P. HRQoL ratings may be higher for children with CL/P compared to youth with other chronic illnesses, but psychosocial functioning may be negatively impacted when compared with healthy youth, particularly for emotional, social, and school functioning in children with CLP or CP.

Introduction: International Turner syndrome (TS) Clinical Practice Guidelines recommend screening for neurodevelopmental (ND) and mental health (MH) concerns in girls with TS; however, it remains unclear whether this is implemented in current practice. The objective of this mixed methods study was to assess screening practices for ND and MH in girls with TS from the perspective of pediatric endocrinologists. Methods: Pediatric Endocrine Society members who provide care for girls with TS were invited to complete an electronic survey on screening practices. Descriptive statistics were used to summarize quantitative results concurrently with thematic analysis of free-text survey responses. Results: A total of 124 surveys were completed (86% attending pediatric endocrinologists, 81% at academic institutions). Overall, 25% of providers reported their patients with TS received both ND and MH screenings. Only 9 (9%) respondents endorsed screening for ND concerns themselves, while more providers (26%) reported they screen for MH concerns. Multiple barriers to screening for ND and MH concerns within the clinical setting were endorsed. Nearly all providers (>93%) reported they would consider using a short, validated screening tool for ND and MH concerns if such tools were available. Discussion: A minority of pediatric endocrinologists currently perform ND or MH screening for patients with TS, however, many would be interested in implementing a brief screening tool into their clinical practice. Given almost all girls with a TS diagnosis receive care from pediatric endocrinologists at least annually, this may be an effective method to increase the proportion of girls with TS who receive recommended screenings.

Individuals mosaic for monosomy X and a cell line with Y chromosome material can have genitalia that appear phenotypical female, male, or ambiguous. Those with this karyotype and typical female genitalia are diagnosed with Turner syndrome; however, this definition specifically excludes those with genitalia other than typical female. There is limited information on whether medical and neurodevelopmental risks are similar among individuals with monosomy X and Y chromosome material across genital phenotypes. This multicenter retrospective study compared comorbidities and clinical management in individuals with monosomy X and Y material and male/ambiguous genitalia to those with typical female genitalia. Electronic medical records for all patients with monosomy X and Y material (n = 76) at two large U.S. pediatric centers were abstracted for predetermined data and outcomes. Logistic regression was used to compare the two phenotypic groups adjusting for site and duration of follow-up. The male/ambiguous genitalia group was just as likely to have congenital heart disease (RR 1.0, 95%CI [0.5-1.9]), autoimmune disease (RR 0.6 [0.2-1.3]), and neurodevelopmental disorders (RR 1.4 [0.8-1.2]) as those with female genitalia. Despite similar risks, they were less likely to receive screening and counseling. In conclusion, individuals with monosomy X and Y chromosome material have similar medical and neurodevelopmental risks relative to individuals with Turner syndrome regardless of genitalia, but there are notable differences in clinical management.

Objective: The purpose of this study was to evaluate possible relationships between number of surgeries and parent ratings of academic functioning among children with isolated oral clefts. Design: Multicenter, retrospective cohort study including structured interviews, questionnaires, and chart reviews. Setting: Completion of questionnaires occurred during clinical visits at 6 different cleft centers across North America. Participants: Parents of 285 children with isolated clefts of the lip and/or palate, aged 8 to 10 years old, participated in structured interviews and completed questionnaires regarding the academic and behavioral functioning of their children. Main Outcome Measures: Parent interview and medical chart review of number of surgeries to date and parent ratings on the Adaptive Behavior Assessment System, Third Edition-Functional Academics Scale (ABAS-FA) and Child Behavior Checklist (CBCL) Total Competency Scale. Results: Parent ratings of ABAS-FA were at or above normative expectations, while ratings across CBCL Competency Scales were lower than normative expectations. Socioeconomic status (SES), age, and race were consistent predictors of parent ratings (higher SES, older age, and Caucasian race were associated with better functioning). Number of surgeries did not add significantly to academic ratings but did significantly contribute to ratings of social and activity participation. Patients with more surgeries were rated with lower functioning in these domains. Conclusions: Findings do not support a connection between number of surgeries and later ratings of academic functioning but do support a connection to social and activity involvement. Recommendations for conducting direct studies of the connection between surgeries and academic functioning as well as clinical considerations for surgeries and impact on social and activity involvement are discussed.

Body image is a critical component of an individual’s sexual experiences. This makes it critical to identify demographic and sociocultural correlates of sexuality-related body image: the subjective feelings, cognitions, and evaluations related to one’s body in the context of sexual experience. We examined how sexuality-related body image differed by gender, sexual orientation, race, age, and BMI. Four items assessing sexuality-related body image were completed by 11,620 U.S. adults: self-perceived sex appeal of their body, nude appearance satisfaction, and the extent to which they believed that body image positively or negatively affected their sexual enjoyment and feelings of sexual acceptability as a partner. Men reported slightly less nude appearance dissatisfaction and fewer negative effects of body image on sexual enjoyment and sexual acceptability than women, but did not differ in reported sex appeal. Poorer sexuality-related body image was reported by people with higher BMIs, not in relationships, who had sex less frequently, among White compared to Black women and men, and among gay compared to heterosexual men. Data also revealed a subgroup of respondents who reported that their body image had a positive impact on their sex lives. The findings highlight a need for interventions addressing sexuality-related body image.

Racial minority men and women face a wide variety of appearance-related pressures, including ones connected to their cultural backgrounds and phenotypic features associated with their identity. These body image concerns exist within a larger context, wherein racial minorities face pressures from multiple cultures or subcultures simultaneously to achieve unrealistic appearance ideals. However, limited research has investigated racial differences in the relationships between theorized sociocultural risk factors and body image in large samples. This study tests pathways from an integrated sociocultural model drawing on objectification theory and the tripartite influence model to three key body image outcomes: appearance evaluation, body image quality of life, and face image satisfaction. These pathways were tested using multigroup structural equation modeling in a national sample of White, Black, Hispanic, and Asian men and women (ns = 205–4797 per group). Although many hypothesized associations were similar in strength across groups, race moderated some of the pathways between sociocultural pressures (media, peer, family), internalization of appearance ideals (thin-ideal, muscular/athletic), appearance surveillance, and body image outcomes. Findings support the likely role of both shared and specific risk factors for body image outcomes, suggesting avenues for tailoring adapted interventions in order to target culturally-salient risk factors.

Objectification theory proposes that widespread sexualization causes women to engage in surveillance of their appearance. We integrated this concept into a model with constructs from the tripartite influence model, which proposes that body dissatisfaction is a result of internalizing cultural notions of thin ideal beauty that stem from family, peer, and media appearance-related pressures. We tested this model with an online sample of 6327 adult women. Specifically, we tested whether these pressures predicted increased thin-ideal and muscular-ideal internalization, leading to greater body surveillance, and in turn lower appearance evaluation and body image quality of life. Structural equation modeling supported many aspects of the model. Family, peer, and media pressures related to higher thin-ideal internalization, which related to higher body surveillance and lower appearance evaluation. Peer and media pressures related to higher muscular-ideal internalization, which related to lower appearance evaluation. However, muscular-ideal internalization was not related to body image quality of life. An indirect relationship emerged between thin-ideal internalization and body image outcomes via body surveillance. Body mass index (BMI) moderated several of these model paths. Findings highlight the value of this integrated sociocultural model, and of BMI as an important moderating factor when examining objectification and tripartite influence models.

Objective To assess health-related quality of life (HRQoL), psychosocial adjustment, and family functioning of children with differences of sex development (DSD) or cleft lip and/or palate (CL/P). Methods In this cross-sectional study, parents of children with DSD (n = 67), CL/P (n = 121), and a comparison group of unaffected youth (n = 126) completed standardized measures assessing family functioning and their children’s HRQoL and psychosocial adjustment. Medical charts were abstracted for youth with either congenital condition. Results Children with DSD were rated as having significantly lower HRQoL and greater internalizing problems compared to youth with CL/P and unaffected youth. Children in the DSD group were also significantly more likely to fall into the clinical risk categories for total and internalizing problems relative to the CL/P and unaffected groups. Caregivers of children with DSD were significantly more likely to endorse items about child suicidality compared with caregivers in the CL/P and unaffected groups. No significant differences were found between groups for externalizing problems or the expressiveness domain of family functioning; parents of children with DSD reported significantly less family conflict relative to the other groups and greater cohesion relative to the unaffected group. Conclusions Youth with DSD appear to be at greater risk for psychosocial problems relative to children with CL/P and unaffected peers. Results underscore the need for integrated interdisciplinary care and ongoing psychosocial risk monitoring in youth with DSD.

INTRODUCTION: Many women seek lactation consultant support in the postpartum period. Lactation consultant support in community or clinical settings is often assumed to extend breastfeeding duration, improve breastfeeding experiences, and be well-received. Few studies have assessed women’s perceptions of the support they received, nor have perceptions been examined in relationship to breastfeeding outcomes and maternal well-being. Our objective was to characterize the lactation consultant support women received and examine how women’s perceptions about the support related to their breastfeeding outcomes, anxiety and depressive symptoms, and parenting stress. METHODS: This observational, cross-sectional study examined receipt of postpartum lactation consultant support among 210 US women. Perceptions of lactation consultant support were examined in relation to breastfeeding outcomes, anxiety and depressive symptoms, and parenting stress to explore outcomes of negative versus positive lactation consultant support experiences, using linear and proportional hazards regression. RESULTS: While overall perceptions of lactation consultant support were positive for most recipients (71%, n=98), 29% (n=40) reported negative perceptions of lactation consultant support. Negative perceptions were associated with lower breastfeeding self-efficacy (β=−11.7, 95% CI: −17.3, −6.0), a less successful breastfeeding experience (β=−19.5, CI: −27.8, −11.3), greater general anxiety (β=6.5, CI: 2.1, 10.9), and shorter total duration of milk production (HR=0.39, 95% CI: 0.18, 0.84). Perceptions were not associated with depressive symptoms or parenting stress. DISCUSSION: Findings highlight the importance of ensuring that postpartum breastfeeding support provided by lactation consultants is perceived positively by women.

Objective: Apert syndrome is a rare and understudied craniofacial condition with regard to its psychosocial impact on children and their parents. Due to the lack of studies focusing solely on the social experiences of children and families with Apert syndrome, it is difficult to develop interventions and strategies to support well-being and positive adjustment for this particular population. This study addressed this gap by assessing the unique social experiences of parents who are raising their children with Apert syndrome including difficulties they face and strategies they use to cope with challenges. Design: Descriptive qualitative study using thematic analysis. Participants: Participants included 21 parents of 12 children (aged 1-12 years) with Apert syndrome (9 couples, 2 fathers, and 1 mother) who were recruited from a pediatric neurosurgery unit in Turkey. Results: The qualitative analysis yielded four main themes describing the experiences of parents including (1) social challenges; (2) coping with negative reactions; (3) promoting socialization and independence; and (4) sources of strength. Conclusions: Parents reported several challenges, including social stigmatization, and utilized a range of strategies to support both their own and their child’s positive adaptation and resiliency, including the use of religion and reliance on their spouses for support. Results offer clinically relevant insights about the strengths and challenges of families coping with Apert syndrome.

Objective An increasing number of patients use social media for health-related information and social support. This study's objective was to describe the content posted on Facebook groups for individuals with microtia and/or craniofacial microsomia (CFM) and their families in order for providers to gain insight into patient and family needs and experiences to inform clinical care. Methods Two months of posts, images, comments, and “like” responses from two Facebook groups in the US and the UK were recorded and analyzed using content analysis. A secondary analysis identified statements of emotion. Results Posts (N = 254) had a total of 7912 “like” responses, 2245 comments, and 153 images. There were three categories of posts: seeking guidance (43%; 9 themes), promoting events/news (33%; 5 themes), and sharing experiences (24%; 3 themes). Across categories, 16% of posts had emotional content. Most comments were responding to posts seeking guidance, including medical care (20%), surgical care (9%), and hearing aids (5%). Promotional posts often aimed to increase CFM awareness. Posts sharing experiences were generally positive, with the highest number of “likes”. Conclusions Facebook groups members frequently exchanged health-related information, suggesting value placed on input from other families and the convenience of seeking information online. Posts also promoted awareness and shared experiences. Clinical care implications include the need for easily accessible accurate and tailored CFM-related health education. Additionally, providers should demonstrate awareness of health information on social media and may address the potential emotional impact of CFM by facilitating access to resources for social support.

Objective: To evaluate the psychometric properties of the Psychosocial Assessment Tool–Craniofacial Version (PAT-CV), a screening instrument for psychosocial risk in families of children with craniofacial conditions, and to examine risk classification of patients in a craniofacial population. Design: Prospective, cross-sectional, single-center study. Setting: Interdisciplinary cleft lip and palate/craniofacial center at a US children’s hospital. Participants: Parents/caregivers (n = 242) of 217 children ages 1 month to 17 years being treated for a congenital syndromic or nonsyndromic craniofacial condition completed the PAT-CV and validating measures from July 2015 to July 2016. The PAT-CV was completed by 121 caregivers a second time to assess test-retest reliability. Main Outcome Measures: PAT-CV, Child Behavior Checklist, Adult Self-Report, Pediatric Quality of Life Inventory, Craniofacial Experiences Questionnaire, and Family Environment Scale. Results: Construct validity of the PAT-CV was supported by significant correlations ( P < .001) between PAT-CV total and subscale scores and the validated measures. PAT-CV total scores categorized 59.9% of families within the universal risk group, 32.3% within the targeted risk group, and 7.8% within the clinical range. Good criterion validity was indicated by significantly higher scores ( P < .0001) obtained on the validated measures for those in the targeted and clinical risk groups. Internal consistency (Cronbach’s α = 0.86) and test-retest reliability for the PAT-CV total score ( r = 0.77, P < .0001) were acceptable. Conclusions: The PAT-CV appears to be a reliable and valid screening instrument for psychosocial risk. Accurate identification of risk and implementation of appropriate interventions may contribute to improvements in medical and psychosocial outcomes.

Cleft lip and/or palate (CL/P) are among the most common of all birth defects. Habilitation requires multiple surgeries and other therapies throughout childhood and adolescence. While multidisciplinary care is recommended, there is a great deal of variation in treatment protocols for this condition. There is ample evidence that children with CL/P are at risk for psychosocial problems. However, to date, few studies have systematically investigated parent and patient self-reported psychosocial and quality of life (QOL) outcomes for children with CL/P as they relate to variations in treatment protocols. The Americleft Outcomes project was initiated to demonstrate and document outcomes to be expected with team care, and to define the key features or characteristics of various team treatment protocols and procedures that are associated with more or less favorable/desirable outcomes. This article will describe the psychosocial component of the Americleft Outcomes project that is aimed at developing a protocol that will allow cross team assessment of psychosocial outcomes for children with CL/P in relationship to the treatments they received. The protocol will be detailed along with a description of the process and considerations that were instrumental in the development of the project. Stakeholder input about the project’s perceived relevance to families of children with CL/P will be reported. The paper concludes with a discussion of the challenges encountered with this project, clinical implications, and future directions.

OBJECTIVES Conducting longitudinal, multicentre, multidisciplinary research for individuals with chronic conditions can be challenging. Despite careful planning, investigative teams must adapt to foreseen and unforeseen problems. Our objective is to identify challenges encountered and solutions sought in a recently completed observational, longitudinal study of youth with cleft lip and palate as well as their caregivers. METHODS Data for analysis were derived from a 6-year, multicentre, prospective, longitudinal study of youth with cleft conducted from 2009 to 2015 that examined oral health-related quality of life and other related clinical observations over time in youth who had cleft-related surgery compared to those who did not. Youth and their caregivers participating in this study were followed at one of six geographically diverse, multidisciplinary cleft treatment centres in the USA. RESULTS Establishing effective communication, ensuring protocol adherence, safeguarding data quality, recognizing and managing differences across sites, maximizing participant retention, dealing with study personnel turnover, and balancing/addressing clinical and research tasks were particularly exigent issues that arose over the course of the study. Attending to process, ongoing communication within and across sites, and investigator and clinician commitment and flexibility were required to achieve the stated aims of the research. CONCLUSION Studying children with cleft and their caregivers over time created both foreseen and unforeseen challenges. Solutions to these challenges are presented to aid in the design of future longitudinal research in individuals with chronic conditions.

This article reviews the psychosocial risks associated with congenital craniofacial conditions with a specific focus on the most common condition, cleft lip and/or palate (CL/P). Risks will be detailed from infancy through adolescence for both children and their families. Families of children with CL/P are at risk for adjustment problems, which may in turn impact child social and behavioral functioning. Children with CL/P are vulnerable to internalizing and externalizing problems, social stigmatization, as well as learning problems. Children and their families may also experience distress related to surgery and other aspects of their cleft treatment. Strategies for addressing psychosocial risks including provision of condition-specific education, enhancement of social support, and utilization of regular screening and referral to empirically supported psychological interventions will be described.

Objective:To examine trends in breast milk provision and to characterize the breast milk feeding practices experienced by mother–infant dyads with cleft lip and/or palate (CL/P) in a large US sample.Design:Cross-sectional study.Methods:An online survey was distributed through cleft-related social media sites in the United States and in a single cleft lip and palate clinic. Statistical analyses included Kruskal-Wallis H tests and post hoc Mann-Whitney tests to examine group differences based on cleft type and prenatal versus postnatal cleft diagnosis. Linear regression was used to estimate associations between obtained variables.Participants:One hundred fifty biological mothers of infants (8-14 months of age) with CL/P (15% cleft lip, 29% cleft palate, 56% cleft lip and palate).Results:Forty-six percent of mothers of infants with CL/P provided breast milk to their infant for at least 6 months. Five percent of infants ever fed at breast, and 43% received pumped breast milk via bottle. The most commonly reported supports included lactation consultants, nurses, feeding therapists, and online support groups. Feeding therapy was received by 48% of infants.Conclusions:A lower percentage of mothers of infants with CL/P reported providing breast milk compared to national estimates of the general population of infants without clefting. Results suggested there are multiple barriers, as well as numerous medical and psychosocial supports that facilitated breast milk feeding success. Implications for care are discussed.

Objective: To identify rates of nonadherence to orthodontic treatment among youth with cleft lip and/or palate (CL/P) and to compare demographic and clinical characteristics of patients categorized as adherent or nonadherent. Design: Retrospective chart review. Setting: Orthodontic treatment program affiliated with a US pediatric hospital-based craniofacial team. Participants: Medical charts of 54 patients with CL/P beginning phase I or phase II orthodontics between 2011 and 2014 (54% male; mean age: 11.7 ± 3.2 years) were reviewed. Main Outcome Measure(s): Data abstracted included demographic and clinical characteristics. Patients were classified as nonadherent based upon treatment termination due to nonadherence, treatment courses extending beyond 3 years, and information about missed appointments, poor oral hygiene, and broken appliances. Results: In all, 24% had treatment terminated due to nonadherence and were significantly more likely to have behavioral health diagnoses ( P = .01) or visits ( P = .02) and social work consults ( P = .01) than patients without termination. Thirty-seven percent had treatment courses beyond 3 years; youth with longer courses were significantly more likely to have cleft lip and palate versus cleft palate only or cleft lip ( P = .03). Patients who missed more than 4 appointments were less likely to have behavioral health diagnoses ( P < .01) compared to those with fewer missed appointments. Poor hygiene and broken appliance notations were common. Youth with poor hygiene notations were significantly older ( P < .01) at treatment initiation than those without notations. Conclusions: Nonadherence was associated with diagnosis, age, and history of behavioral health or social work involvement. An understanding of adherence and relationships with clinical and demographic factors can inform clinical care and support intervention development to improve outcomes.

Objective To examine fertility counseling and fertility preservation (FP) referrals for young women with Turner syndrome (TS) at pediatric centers and identify possible associations with patient demographic and medical characteristics. Design Retrospective medical record review. Setting Pediatric academic medical centers. Patient(s) Four hundred and sixty-nine young women with TS (mean age = 14 years, standard deviation 8.5 years; 77% white) who received care between March 2013 and March 2018. Intervention(s) None. Main Outcome Measure(s) Standardized form to abstract demographics, medical (karyotype; menarchal status; developmental, neuropsychological, and psychological concerns), and treatment characteristics (duration of care, receipt of multidisciplinary care, documentation of fertility/pregnancy counseling, FP specialist referrals) from medical records. Result(s) We found that 67% of families had documented fertility counseling, although only 27% of charts documented counseling with patients specifically. Only 10% of patients were referred to a FP specialist; 59% of patients with spontaneous menarche had no referral. Pregnancy risk counseling was documented in 38% of charts. In multivariate analyses, families were more likely to receive counseling if the patients had multidisciplinary care (adjusted odds ratio [AOR] 2.82). Greater duration of care (AOR 1.16); mosaic (AOR 47.94), complex (AOR 14.59), or partial deletions karyotypes (AOR 35.69); spontaneous menarche (AOR 4.65); and multidisciplinary care (AOR 4.02) had increased odds of FP specialist referrals. Patients with developmental concerns (AOR 0.08) had decreased odds of referrals. Conclusion(s) Fertility and pregnancy counseling are not routinely documented among patients with TS, and even patients with a limited window of reproductive potential were infrequently referred to FP specialists. Patients seen in multidisciplinary clinics were more likely to receive recommended counseling.

Using the Psychosocial Assessment Tool-Craniofacial Version (PAT-CV), this study measured variation in psychosocial risk in families of children with craniofacial conditions by demographic and clinical characteristics, frequency of condition-related problems, concordance between caregivers' report of risk, and association between risk level and psychosocial service utilization.Caregivers (n = 242) of 217 children with craniofacial conditions completed the PAT-CV, a psychosocial risk screener. Medical records were also abstracted.The PAT-CV scores varied significantly by insurance type and syndromic versus nonsyndromic diagnosis type. Language problems were most commonly reported on the Craniofacial Problems subscale, though 13% to 56% of parents endorsed specific problems. Mothers and fathers reported similar risk levels. Families with past social work or behavioral health consults had higher PAT-CV scores than those without consultations.The PAT-CV efficiently screens for psychosocial risk and craniofacial-specific problems. This tool may help clinicians identify families in need of intervention.

Objective: To explore factors related to completion of surgery recommendations among children with cleft lip and palate (CLP) or cleft palate only (CPO). Design: Multicenter prospective longitudinal cohort study (2009-2015). Setting: Six cleft centers in the United States. Patients/Participants: A diverse sample of 1186 youth aged 7.5 to 18.5 years with CLP or CPO and a caregiver. Results: Data were collected from child–caregiver dyads at baseline and up to 3 follow-up visits. Of the 765 surgeries recommended during the study period, 83 were postponed and 597 were completed; this represents a completion rate of 78%. There were multiple reasons identified by patients for why the remaining 85 recommended surgeries were not completed. Children with nonprivate insurance were more likely to postpone recommended surgeries. Hispanic/Latino and Asian children had fewer surgeries compared to whites/Caucasians. Greater severity in rated speech differences was associated with more surgeries. Among participants who had completed all recommended surgeries, providers rated over 86% as having normal or mildly different facial appearance and 83% as having a normal or mild speech intelligibility rating. Similarly, caregivers rated 80% of facial appearance and 78% of speech positively. Approximately 25% of children had an additional surgical recommendation at the end of the study. Conclusions: The majority of surgical recommendations were completed with positive outcomes in facial appearance and speech intelligibility by provider and caregiver ratings. Several factors contributed to surgical recommendations not being completed and the results underscore the importance of examining socioeconomic and demographic disparities in surgical care.

This chapter details the recommended elements of the mental health assessment of individuals seeking cosmetic surgery or minimally invasive cosmetic treatments. Recommendations are provided for both mental health clinicians and aesthetic medical providers (e.g., surgeons, dermatologists). The standard elements of a comprehensive, initial mental health evaluation provide the foundation for assessment. In addition to assessing patients’ current psychosocial functioning and mental health history, providers should more specifically evaluate patients’ body image concerns. This includes a detailed assessment of body dysmorphic disorder (BDD) symptoms. Mental health providers, as well as clinicians from whom cosmetic procedures are being requested, should also assess patients’ motivations and expectations for cosmetic treatment. These and other more specific areas of assessment will allow the consulting mental health professional to provide a comprehensive report to the medical professional providing the cosmetic treatment. It will also help surgeons, dermatologists, and other providers of cosmetic treatment to determine whether cosmetic treatment is appropriate for individuals with minimal appearance flaws who request cosmetic procedures.

This chapter reviews the topic of body dysmorphic disorder (BDD) and cosmetic medical (including surgical) treatments. One of the most concerning aspects of BDD from a clinical perspective is these individuals’ pursuit of non-mental health treatments—such as surgery, dermatologic treatment, and dental treatment—for a mental health problem. The prevalence of BDD among individuals who seek cosmetic surgical and nonsurgical treatments—especially rhinoplasty—is consistently higher than BDD’s estimated prevalence in the general population. Conversely, a high proportion of persons with BDD seek aesthetic procedures to improve their perceived appearance defects. The limited literature on changes in BDD symptoms and psychosocial functioning after these treatments suggest that outcomes appear to often be poor. BDD symptom improvement is rare and, at best, temporary; there also is risk for symptom exacerbation. Provision of cosmetic treatment for BDD concerns may also involve risks for both patients and clinicians. Taken together, these findings suggest that BDD is a contraindication for cosmetic procedures. The chapter concludes with directions for future research.

Summary Short introduction/Background Children affected by differences/disorders of sex development (DSDs) and their families are vulnerable to significant risks across developmental stages that threaten quality of life and psychosocial functioning. Accordingly, both experts in DSD treatment and patient advocacy groups have endorsed the incorporation of psychosocial care into interdisciplinary management of DSD conditions. Objective This study assessed psychosocial needs and received services reported by parents of children with DSD treated at two large US academic medical centers. Specifically, differences in parents' perceptions of psychosocial service needs were compared between those who received or did not receive interdisciplinary care that included psychology/social work professionals. Study design In a cross-sectional study, sixty-four parents of children with DSD aged 0–19 years attending two major academic centers with interdisciplinary teams completed a questionnaire about their receipt and perception of 12 individual psychosocial services throughout their child's DSD treatment. Results Receipt of individual psychosocial services ranged from 27 to 81%. Most commonly, parents reported having a psychosocial provider explain medical terms and answer questions after talking with a doctor (81%), assist with words and terms to describe the condition and treatment (69%), and help navigate the hospital system (63%). Families positively endorsed psychosocial services, with 91–100% of services received rated as helpful. Parents of children who received care as part of an interdisciplinary team were significantly more likely to receive psychosocial services than those treated by single providers (e.g., urologists). Specific gaps in psychosocial care were noted in regard to access to mental health providers familiar with DSD, fertility counseling, and support with community advocacy (e.g., arranging for accommodations at the school or advocating on patient's behalf with the insurance company). Among families who had not received them, services most desired were assistance with words and terms to describe condition or treatment; explanation of medical terms and answering questions after meeting with a doctor; connection to resources such as books, pamphlets, websites, and support groups; and a central care coordinator for the medical team. Discussion and Conclusion Families value psychosocial services but are far less likely to receive services if they are not seen in an interdisciplinary clinic visit that includes a psychosocial provider. Families desire but often lack mental health, advocacy, and fertility-related support. This study highlights the need for sustained psychosocial follow-up across development, even in the absence of pressing medical concerns, to provide support and anticipatory guidance as needs and issues evolve. Extended Summary Table . Psychosocial services received by DSD interdisciplinary clinic visit (yes/no). Psychosocial service received Interdisciplinary DSD clinic visit p-value Yes No n % n % Emotional support for the family at diagnosis 24 63.2 4 15.4 0.0002 Strategies for talking with others about diagnosis 22 57.9 6 23.1 0.006 Ways to help the family talk with the child about diagnosis 26 68.4 6 23.1 0.0004 Central contact person or care coordinator 21 55.3 7 26.9 0.03 Emotional support as the child aged 26 68.4 4 16.0 Patient and family advocacy to the community (e.g., school, insurance company) 15 39.5 2 7.7 0.005 Connection to resources (e.g., books, support groups) 26 68.4 7 26.9 0.001 Mental health services with a provider who is knowledgeable about the condition 22 57.9 2 7.7 Individual to talk with the child about fertility 15 39.5 2 7.7 0.005 DSD, difference or disorder of sex development.

Cosmetic and reconstructive breast surgery has increased in popularity among adolescents in the United States. As more adolescents pursue these procedures, an understanding of the psychological aspects of these surgeries becomes increasingly important for the benefit of both patients and providers. The authors review the psychological aspects of cosmetic and reconstructive surgical breast procedures as they pertain to adolescents, including augmentation mammoplasty, gynecomastia correction, breast reduction, and asymmetry correction. They include a discussion of the medicolegal and ethical implications of these procedures and recommendations for clinical management.

Introduction Cleft lip and/or palate (CL/P) affects not just the child born with the condition but also the child's parents. Prior research has been primarily cross-sectional, quantitative, and focused on mothers' emotional, social, and care experiences. Fathers' experiences have been neglected despite the important role fathers have in their child's well-being and development. The purpose of this study was to examine how the timing of a child's diagnosis (prenatal vs. postnatal) affects how fathers cope and adapt. Method We conducted a descriptive qualitative study with a convenience sample of 17 fathers and used thematic content analysis to code the interviews. The sample included 10 fathers who received a prenatal diagnosis and 7 who received a postnatal diagnosis. Results The following 4 major themes emerged: (a) first hearing the diagnosis, (b) taking care of a baby with cleft, (c) future concerns, and (d) reflections. Course of treatment, feeding, and social stigma were reported as major sources of stress for all fathers. Discussion All fathers should be routinely assessed by CL/P treatment teams and included in support services. Some fathers whose babies were diagnosed at birth experienced self-blame, suggesting the importance of screening this group of fathers for distress at birth. Findings underscore the importance of family centered approaches to care that include both mothers and fathers in treatment planning, interventions, and future research. (PsycINFO Database Record